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Position Paper
of the APEA
For the Reintegration of
« Asperger’s syndrome »
in the DSM under
the Name “Aspie Profile”
Final Edition
08 11 2019
Fall 2019
© APEA
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My main reason for consulting is the lingering feeling that an invisible disability
is holding me back for the next steps in my evolution.
S.,
Male Adult Asperger
June 2019
--------------------------------
The world in my head is a satellite of reality.
C.,
Female Adult Asperger
August 2019
--------------------------------
I always feel like I don’t belong.
S.,
Female with PDD-NOS autism transiting toward Asperger
June 2019
--------------------------------
The main events in childhood that occur to me have to do with sensory oversensitivity, social
difficulties, self-stimulatory behavior, obsessions (connected to language acquisition), and
obsessive-compulsive traits. Peripheral affairs include toe walking, language acquisition,
executive impairments, parasomnias, and insomnia. (…) I toe walked as a child and still toe walk
half the time I walk. I can stop when asked but I instinctively do it. (…) I also had severe social
anxiety and mutism, sometimes whether I was anxious or not. I still have social anxiety, where I
avoid being around people if there are visitors over, and mutism.(…) I have very serious
problems organizing myself for any work and I’ve always been an absolute mess at home and
school, and starting tasks is almost impossible for me while completing them after I’ve finally
started becomes easy. (…) I have much more trouble speaking than I do writing. I stutter often
when I speak, don’t have much expression or make many gestures, must stop and think a lot,
but there is a secret remedy for my troubles, and it’s in writing. My mind, from its basic to highest
thoughts, works by linguistic analogy, by bootstrapping linguistic knowledge and intuitions to
any new situation, particularly written. While my speech is unrefined, I lose a lot of my speech
problems if, instead of engaging in ad hoc speech, I use writing in my mind instead. That is,
instead of speaking as an individual activity, I can speak much more clearly if I imagine myself
writing what I want to say consciously and then speak not generatively, spontaneously, but by
rehearsing the written words in my mind. I imagine the words the other person speaks as text to
be read, and then imagine my response as written back, something somewhat epistolary.
J.,
Autistic man (classic profile) having evolved as Asperger
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Dr. Tony Attwood’s Support
On November 6, 2019, Dr. Tony Attwood, recognized as the world's foremost authority
on Asperger's Syndrome, fully endorsed the Position Paper and adhered to its
conclusions and recommendations. It was in an email sent to Dr. Isabelle Hénault, a
colleague of Dr. Normand Giroux, lead author of the paper, that Dr. Attwood expressed
his support. Here is the content:
As to Normand et al.’s Position Paper. It is brilliant. It is probably the best position paper
on Asperger’s syndrome and autism that I have ever read. The text is so insightful,
eloquent and I agree totally with his perspective and recommendations. Please do pass
on to Normand and colleagues my appreciation and request to help with the Position
Paper in any way that I can. I would like to endorse and promote the document.
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Table of Contents
Synopsis…………………………………………………………………………. 5
Chapter 1 Neuroanatomical Basis of the Asperger Condition………….. 6
• The clinical lighthouse, rescued by research…………….……………. 6
• Neuroanatomical and biochemical evidence……………….…………. 6
Chapter 2 Clinical Basis of the “Asperger’s syndrome” Condition…...… 9
• Novelty or confusion?......................................................................... 9
• A bogus integration……………………………………………...……….. 9
• Back to reality for the clinician…………………………………..………. 9
• The crack in the syllogism behind the ASD construct…………..……. 10
• Repercussion #1 of DSM-5: AS is ignored……………………..……… 10
• Repercussion #2: proliferation of differential diagnoses
in the absence of a base condition…………………….………….. 11
• Repercussion #3: double-blind evaluation, clinical myopia,
diagnostic presbyopia……………………………………….……… 11
• The Asperger condition – what is unique and exclusive about it…… 12
• Measure anosognosia, as a priority, to distinguish AS………………. 14
• Asperger's syndrome, an elusive difference for sure, but so real…… 14
• Spectral migration on one side of the spectrum;
the impermeability of the neuro-typical border, of the other…….. 14
• Early detection……………………………………………………………. 16
• Insight: its genesis………………………………………………………... 16
• Syndrome or Profile?....................................... ................................... 17
• Alarming over-diagnoses?................................................................... 18
Chapter 3 The Sociological Bases of Asperger's Syndrome…………..….. 20
Chapter 4 Conclusion and Recommendations…………………………… 22
Chapter 5 WE REQUEST………………………………………...………… 25
Chapter 6 Proposed text for the DSM-5-TR………………………………. 26
Chapter 7 International Petition…………………………………………….. 28
Addenda
1. Autism Spectrum Disorder DSM-5 Diagnostic Criteria…….. 29
2. Blogs Visited by Aspies……………………………………….. 32
3. Position Paper Authors………………………………………... 34
4. List of articles…………………………………………………… 35
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Synopsis
In 2013, the American Psychiatric Association (APA) removed Asperger’s syndrome
(AS) as a unique and specifically described category from the DSM-IV and included
the condition in a broader, less-defined continuum referred to as Autism Spectrum
Disorder (ASD) in its DSM-5 publication. This single undertaking, albeit supported at
the time by numerous experts, has been a disservice to the practitioner clinicians in
the field and more importantly, prejudicial to Asperger people in society. Although the
DSM-5 dates from 2013, a sample of current articles (since the last 12 months) on the
subject clearly show that its acceptance is far from unanimous and confirms the validity
of this Position Paper.
The APEA (the French acronym from the Association of Parents of Asperger Children
of Québec, Canada) submits this Position Paper which describes the current problems
with AS being imbedded in the ASD continuum, argues the distinctiveness of the
condition, states that it be called a profile (as does the AANE) rather than a syndrome
and finally proposes a new definition of the condition. Based on solid evidence coupled
with pertinent expert opinions, the Position Paper highlights the key damaging
repercussions brought on by the DSM-5 classification and suggests that measuring
the level of anosognosia be used as an efficient tool to distinguish AS.
The APEA, through its spokesperson Dr. Normand Giroux, psychologist, respectfully
submits this Position Paper with its corresponding proposal for review and
consideration by the APA. The Association is available to discuss, participate in review
committee activities and otherwise provide any further support information or
clarifications which would advance this issue. The authors of the Position Paper are
listed in Addendum 3.
This Position Paper has the unconditional endorsement of Dr. Tony Attwood, the
world’s leading expert on the subject of Asperger’s syndrome (see page 3).
Furthermore, Dr. Temple Grandin, the internationally-recognized autism expert
agrees on the reintegration of Asperger’s syndrome under the name Aspie profile.
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Chapter 1
Neuroanatomical Basis of the Asperger Condition
The clinical lighthouse, rescued by research
Until recently, markers for Asperger syndrome relied on clinical criteria. For the
past 10 years, evidence has consistently emerged highlighting specific
neuroanatomical markers differentiating Asperger syndrome from the rest of the
autism spectrum even at the anatomical level.
As such, based on the last ten years of research, as well as on extensive clinical
experience and clear and undeniable sociological grounds, Asperger syndrome not
only meets the criteria for a light mental disorder but also unambiguously displays a
specific and exclusive difference which excludes any overlap with the condition known
as High Functioning Autism. Unquestionably, the fact of not clearly distinguishing these
two diagnostic groups causes great prejudice of AS persons who do not benefit from
early treatment in order to reduce the risk factors. Furthermore, they do not benefit
from special consideration for psycho-social assistance and adequate medico-legal
consideration in adulthood.
Neuroanatomical and biochemical evidence
The important amount of meta-analyses confirms beyond a doubt the clear
distinction between these two diagnostic groups (Asperger Syndrome and High
Functioning Autism). Tsai & Ghaziuddin (2014)1, upon surveying literature pertaining
to Asperger syndrome and Autism disorder, noted over 90 clinical variables
differentiating the two conditions. Of 128 publications published between 1994 and
1 Tsai, L. Y., & Ghaziuddin, M. (2014). DSM-5 ASD moves forward into the past. Journal of Autism
and Developmental Disorders, 44(2), 321–330.
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2012, 94 such variables showed definite differences in neurocognitive profiles, motor
and sensory functions, executive functions, comorbidities and treatment outcomes
among other aspects.
Faridi and Khosrowabadi (2017)2 confirmed these findings and brought more
information to light in their own review paper indicating major differences between
Asperger syndrome and Autism disorder, arguing once again that the diferentiation of
these subcategories helps specific intervention. In fact, these differences go above
and beyond the initial IQ marker as a “cutoff”. They extend to neurological, cognitive
and behavioral distinctions. For instance, a difference in the level of N-Acetyl
aspartate/choline (NAA/Cho) affects the dopaminergic system in Asperger syndrome,
leading to more OCD and a significant modulation in serotonin. The latter affects
Asperger patients in comorbidities such as depression and anxiety, whereas it can
also be seen to be responsible for a difference in male and female expressions of
Asperger syndrome (facial emotional recognition, social interaction, eye gaze and
speech processing).
Early research in 2010 by Jou et al. revealed a clear difference in cortical folding
in children with either an Asperger syndrome or an Autism disorder in Broca’s area,
impacting, in part, the speech/language delay in children with Autism disorder. At the
same time, using VBM (Voxel Based Morphometry), McAlonan et al. (2010)3 found
important neuroanatomical differences in both subgroups.
Duffy (2019)4 further argues the necessity for different clinical intervention
based on his own study in which he discovered a difference in information treatment
based on EEG activity between Asperger syndrome, Autism disorder and control
patients.
De Giambattista et al. (2019)5 suggest that recent studies in grey matter
distribution between the two diagnostic subcategories support the evidence of a
differentiation and the necessity to separate individuals so as not to obscure the
characteristics of either diagnostic subtype. In fact, differences in language
development, academic achievement, comorbidities and cognitive profiles indicate
clearly that both subgroups would largely benefit from a distinction. For instance, age-
related paths of treatment could better target impairments according to the “subtype”
whether it be speech therapy and psychomotricity for Autism disorder or social training
and psychotherapy for Asperger syndrome. De Giambattista further goes on to
2 Faridi, F., & Khosrowabadi, R. (2017). Behavioral, Cognitive and Neural Markers of Asperger
Syndrome. In Basic and Clinical Neuroscience, 8(5) 349-360.
3 McAlonan, G., Cheung, C., Cheung, V., Wong, N., Suckling, J., & Chua, S. (2009). Differential effects on white-
matter systems in high-functioning autism and Asperger’s syndrome. Psychological Medicine, 39(11), 1885-93. doi:
10.1017/s0033291709005728
4 Duffy, F., Als, H., Autism, spectrum or clusters? An EEG coherence study (2019). BMC Neurology 19 (27)
doi:10.1186/s12883-019-1254-1
5 De Giambattista, C., Ventura, P., Trerotoli, P. et al. J Autism Dev Disord (2019) 49:
138. https://doi.org/10.1007/s10803-018-3689-4
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suggest that the use of the MASQ (Michigan Autism Spectrum Quotient) seems to be
the better tool at the moment to discriminate between both subcategories, as mental
imagery is not readily available for each patient.
In short, all these elements prove the distinction between High Level Autism
and Asperger’s and hence the necessity to separate the two diagnostic subcategories
so that there may be a more specific and adapted therapy. Asperger persons require
precise psychological and social intervention allowing for a decrease in risk factors in
consideration of social integration whereas Autistic Disorder (AD) patients require
pinpointed clinical interventions and support tools including, among others,
psychomotricity, language development and cognitive tools.
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Chapter 2
Clinical Basis of the “Asperger’s syndrome” Condition
Novelty or confusion?
The DSM-5 was published in 2013 and was quickly adopted by numerous
clinicians. In the mini world of autism, the impact has been significant6. Indeed, the
DSM-5 reconfigures the definition of autism, bringing together basic autism (classic
autism disorder) and autism spectrum; a single name is retained and promoted. Autism
Spectrum Disorder (ASD) holds itself as the new construct for autism in all its forms.
In particular, it dissolves Asperger's syndrome with high-functioning autism. This
paraphrase/umbrella designation, ASD, aims to cover the essence of autism and to
designate it by a singular noun, ASD, indicating the homogeneity of the concept. The
benefits of such a merger were well greeted; indeed, autism would be "one", it would
be the same everywhere, its opaque and insidious force being known. As such, only
the quantities would vary and consequently, the degree of penetration and impact in
each case.
A bogus integration
But beyond appearances, the construct of this unified condition is not very
integrative. The DSM-5 presents the new definition of autism with some 39 words, a
heavy and cumbersome description.
“ASD is defined as persistent deficits in social communication and social interaction across
multiple contexts AND restricted, repetitive patterns of behavior, interests, or activities, with or without
accompanying intellectual impairment, with or without accompanying language impairment, and
requiring support”.
Furthermore, it is now necessary to distinguish levels, or degrees, of severity
within the rearranged condition: these are Degrees 1, 2 or 3. Degree "3" appears to be
reserved for what was previously referred to as the classic autism disorder (the Kanner
profile with intellectual disability, under code F84.0 in DSM-IV-TR); Degrees "1" and
"2” refer to the previously named profiles: PDD-NOS (Asperger's syndrome, coded
F84.5 and atypical autism, coded F84.9). In addition, for Degrees 1 or 2, classic autism
without disability could possibly be included. By expanding in this way, the definition
of autism is becoming more hermetical.
Back to reality for the clinician
From the clinician's point of view, the integration of all forms of autism is rather
inconvenient and artificial: thus, its main tool, the ADOS (and its counterpart the ADI-
R), clash and express something other than this integrated concept. In fact, they
6 See Addendum #1: Autism Spectrum Disorder - DSM-5 Diagnostic Criteria.
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introduce, or re-introduce, the usual docimology of autism in three parts or levels:
autism, non-autism and autism spectrum. In ADOS, the autism spectrum does not
relate to autism. These three possible levels are related to a 10-point severity scale:
this scale is not that of the DSM-5.
The crack in the syllogism behind the ASD construct
The syllogism underlying the DSM-5 ASD notion that autism is everywhere
homogeneous - the only source of variation being quantity – is false. Basically, the
ASD concept is dislocated because, in the real world, a notional "crack" splits it in two.
Indeed, the Kanner condition with ID (Intellectual Disability), that is, basic and whole
autism, is not spectral; it is monolithic. In this extreme condition, two sources of
disturbance combine (not cumulate) forming a unique entity. These sources are
autism, on the one hand, fully loaded, integral, wall-to-wall; and, on the other hand,
intellectual disability with its varying degrees.
It is also the interaction of these two sources or conditions that matters. The
way in which one catalyses the other and vice versa, which shatters it into hundreds
of pieces. An explosion of amalgams of mental retardation and autism which result in
idiosyncratic composites with aggravated characteristics, making these two conditions
unassimilable to the light forms of spectral autism, that is to say of partial, residual and
moderate autism, notably that of Asperger's syndrome (AS).
Repercussion #1 of DSM-5: AS is ignored
For the philosopher of science, an epistemological ambiguity characterizes the
ASD: he recognises a hybrid theory of autism. This theory brings together in the same
construct "basic autism" and "spectral autism". The ambiguity concerns the
heterogeneity of the construct. Lost in this collection of multiple and diverse autistic
conditions, Asperger's syndrome, a condition on the boundary of the spectrum, slips
into oblivion. In recent years, we see that AS is in the blind spot of medicine, especially
female AS7. Child AS, on the other hand, is also the victim of an ideological
banishment: resulting differential diagnoses will proliferate due to the non-recognition
of the autistic base of the condition under review.
7 American Asperger women struggle for their acceptance. See: TheAWAKEProject.org, “Founded by
Dana Waters, PsyD, ABPP, Professor, Antioch University, Seattle, this group fights for the survival of
the category. “I began my “official” quest to be an autistic advocate and influencer by starting the
AWAKE Project in March 2019. I was diagnosed on the autism spectrum in May … of 2018 (I was 53 at
the time). I had been a psychologist for nearly 20 years and I had no idea. Being diagnosed was a
liberation for me and also terrifying. Is it OK for a psychologist to be on the autism spectrum?”
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Repercussion #2: proliferation of differential diagnoses in the absence of a
base condition
DSM-5’s current nomenclature, clustered and undifferentiated, leads to a
proliferation of differential diagnoses related to comorbidities, without any prior or
subsequent link to a fundamental and initial condition: high-level autism, ASD.
Faced with the atypical symptomatology of ASD, professionals will search for
and map personality disorders (psychiatry has this reflex) or comorbidities (psychology
and neuropsychology have this reflex). Thus, the diagnostic prism could reveal, even
in the young child, a generalized anxiety disorder, an oppositional disorder, a
depressive disorder or even an ADHD, a language disorder, an executive disfunction,
a learning disorder, or all of these at the same time and perhaps including others
among twenty common comorbidities.
We could detect, in adults, a borderline personality disorder, OCD, BPD, GAD,
an adjustment disorder or some other known condition on which we could potentially
explain the difficulties experienced. Thus, the same problem arises with the
proliferation of diagnoses, a consequence of the epistemological ambiguity and
opacity of the DSM-5 formulations related to the ASD condition.
Can an 8-year-old have as many aggravated conditions as found in personality
disorders? Highly unlikely unless there is a history of chronic hardship, which is rarely
the case. Can the child accumulate so many auxiliary (comorbid) deficiencies without
a basic explanation, the acknowledgement of a single condition, lodged at the base,
underlying these peripheral difficulties in an integrative vision of all the problems?
Differential diagnoses (e.g., ADD, anxiety disorder, mood disorder, emotional lability,
OCD, etc.) are placed in a better relative position and better explained, as a group, by
Asperger-type ASD than by any single personality diagnosis. Indeed, the symptoms
and their relative multiplicity, disparity, and severity – in short, the clinical spectrum -
find in the ASD-Asperger hypothesis a superior integrative value than the shattering
and cumulation brought on by a succession of differential diagnoses.
Repercussion #3: double-blind evaluation, clinical myopia, diagnostic
presbyopia
The atypical child, who carries Asperger-type spectral autism, will inexorably
be at risk of being evaluated in a double-blind manner, this, in the following sense: 1)
the child will be evaluated without the right set of binoculars – the right telescope (to
focus on the warning signs in a grouped manner) in order to grasp its unique
configuration; and 2) nor with the help of the right microscope (to detect and focus on
its unique nature) by both professionals and parents. It will be a great challenge to
detect the overall pattern of the warning signs, the topography of the terrain which is
so specific to the ASD Asperger (the effect of the autistic hurricane having been
weakened, losing speed, strength) beyond the topographical features that are the
observed comorbidities. The terrain is notoriously rugged because of the multiple,
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intense and disparate alterations. We find incongruous, astonishing atypia, strange
paradoxes; significant weaknesses rubbing elbows with exceptional skills. Not to
mention intense fascinations, combined with pure, radiant and superior skills.
Asperger's syndrome, when properly detected, explains the overall symptoms of the
person concerned, better than any alternative. It is the principle of parsimony as
applied to the diagnostic approach. The principle of Ockham's razor8, notoriously
ignored in psychology and psychiatry, is the principle of simplicity, parsimony,
rationality and states that multiples should not be used without necessity; the simplest
hypotheses should be preferred.
Every support plan must obey a basic stipulation: the child is on the Spectrum.
The science of spectral autism is clean, unique, specific. As such, high-functioning
autism is the source of the difficulties identified by observation results. The intervention
plan, therapy plan, etc. must be driven by the autistic nature of the child's disorders;
thus, the choice of procedures and techniques, for example for early childhood, stems
from the applied analysis of behavior in the form of intensive behavioral intervention9.
The therapy outlook for each nosological group is thus restored. It is known that
treating low-functioning and high-functioning autism involves, for each condition, a
differential regime of sustained and continuous intervention. During the early childhood
years, such a regime will be extended to the maximum depending on the degree of
impairment, with a decrease of this intensity, especially for high-functioning autism,
and a fortiori for Asperger syndrome, as the age increases up to the adolescent or
young adult period. From that point on, the interventions are on the basis of when
required and are therapeutic in nature, more focused on the acquisition of social norms
and the control of anxiety.
The Asperger condition – what is unique and exclusive about it
The term "Asperger’s syndrome" was coined by Dr. Lorna Wing, an English
psychiatrist, in 1981, following her translation and publication of Hans Asperger's work.
The condition was recognized in 1993 in the ICD-10 and in 1994 in the DSM-IV. It was
removed from this latter nomenclature in 2013 for reasons of ambiguity in the criteria
of the condition10.
But the claim that it is difficult to distinguish Asperger's syndrome from high-
functioning autism comes out as inaccurate to the clinician’s trained eye. There is a
strong differentiating factor between the patterns of spectral autism on the one hand,
8 Called Ockham’s Razor Principle: Principle of simplicity, parsimony, rationality: multiples should not
be used without necessity, the simplest hypotheses should be privileged.
9 Tarbox, J., Dixon, D.R., Sturmey, P., & Matson, J.L. (Ed.) (2016). Handbook of Early Intervention for
Autism Spectrum Disorders. Springer.
10 Shilpi Sharma, Lisa Marks Woolfson, Simon C. Hunter (2011). Confusion and inconsistency in
diagnosis of Asperger syndrome: a review of studies from 1981 to 2010.
https://journals.sagepub.com/doi/abs/10.1177/1362361311411935?rfr_dat=cr_pub%3Dpubmed&url_v
er=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&journalCode=auta
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such as Kanner's autism without ID and PDD-NOS and, on the other hand, Asperger's
syndrome, at least in adults: this factor is the degree of anosognosia.
Typically, there is a lesser degree of anosognosia in adult Asperger’s
syndrome and it is progressive, dissipating as the quest for identity evolves.
Anosognosia is “an inability or refusal to recognize a defect or disorder that is
clinically evident” (Merriam-Webster Dictionary). It is therefore the opposite of insight,
a keen understanding of a condition. Asperger's syndrome is strongly felt, in early
adolescence and sometimes from childhood, as a "strange and undefinable malaise".
The impact on self-awareness and relationships with others is direct. Frequently, this
malaise will dissipate suddenly when the person comes across the Asperger
hypothesis, often in the form of a testimony, an article, or a video document. Insight
emerges as a true "copy and paste": "He, or she, is me! I truly recognize myself, a lot,
totally ". And it's a shock. The veil is lifted, the quest for identity begins. All that remains
is the official confirmation of the condition that the diagnosis will endorse, the diagnosis
which will be supported by the observations collected throughout the school journey.
The concept of anosognosia is known in reference to schizophrenia; but it
applies analogously and judiciously to high-functioning autism. The scales of
observation and measurement of this phenomenon are rare and concern mainly
mental illness. But in reference to Asperger's syndrome, it is paired with that of insight
which refers to a sudden discovery, access to the solution of a problem. The problem
here, felt by the individual, is "why I am different from others?", "why I am ineffective
with others?", or "why can I do without others?", that is, the atrophy of need-of-others,
in short: the shrinking of relational propensity, of social drive. The Asperger and the
neuro-typical are revealed as two parallel worlds, two riverbanks face-to-face. The
Asperger is aware of it. The term insight is used to determine the level of "awareness
of the disorder," that is, whether the person recognizes "suffering," carrying a condition,
a disability, or an illness. Insight is therefore the discovery of a solution that becomes
apparent only by a reorganization of the elements of the problem. The term can be
used to mean that a person "now sees the whole thing," or has new information or an
experience that illuminates the overall condition.
Evolutionary partial anosognosia is the pathognomonic marker of
atypical spectral autism of the Asperger type in adults11.
11 Rightly, authors such as Ghaziuddin have shown that there are other signs that effectively distinguish
Asperger syndrome from high-functioning autism, such as the specifically impaired quality of their social
relationships, their idiosyncratic way of communicating, and interests of rare intensity. See M.
Ghaziuddin, “Defining the behavioral phenotype of Asperger syndrome,” Journal of Autism and
Developmental Disorders, vol. 38, no. 1, pp. 138-142, 2008. and M. Ghaziuddin and K. Welch (2013).
The Michigan Autism Spectrum Questionnaire: A Rating Scale for High-Functioning Autism Spectrum
Disorders. https://www.hindawi.com/journals/aurt/2013/708273/. This questionnaire is particularly
interesting. Thus, « The purpose was to construct a scale that would be brief and easy to administer
and incorporate questions targeting behaviors suggestive of Asperger syndrome. The aim was to focus
on two main areas: quality of social interactions and form/content of communication. For example,
questions 2 to 5 were intended to capture the pedantic style of communication said to be typical of this
condition. Question 8 attempted to describe the “active but odd” style of social interaction said to be
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Measure anosognosia, as a priority, to distinguish AS
Measuring anosognosia remains a challenge but should nevertheless be a
diagnostic priority. The lack of valid tools to capture this dimension has contributed to
confusion between the various spectral autism profiles, including AS, and has hindered
AS’s diagnostic differentiation. To dispel anosognosia, for the Asperger person, is to
know an epiphany, a kind of slow or sudden understanding of the meaning of
something, in this case, the autism inherent to his or her personality and how he or
she perceives and feels its difference. Insight awakens early in Aspergers, on its own,
while occurring later in other autistic people in the high functioning zone of the
spectrum (Kanner with no ID and PDD-NOS), through external communication or
conditioning (the person learns from external sources that he or she is autistic).
Asperger's syndrome, an elusive difference for sure, but so real
Asperger's syndrome is likened to an invisible "difference". Since it is declared
an invisible difference, can we conclude that the resemblance with normality is
manifest, salient, predominant? Yes. The Asperger person, an altered neuro-typical
person, or, as mentioned with a bit of humour, a “failed autist” (“an unfinished autism
condition", says Attwood12). In the first position or case of the spectrum proper, that of
Kanner without ID, anosognosia is at its peak. The person does not realize that he or
she is autistic, as long as and unless he or she is taught. This person does not initially
see or discover the insidious, daily impacts and contingencies of his or her condition.
In the PDD-NOS case, the incidence of anosognosia is partial, moderate, but better
than in the previous case.
In the last case, the "Asperger" case, the anosognosic haze inevitably
dissipates during adolescence in girls and at the end of this period in boys. At 13-14-
15 years for girls and at 17-18 years for boys, the quest for identity awakens. The
teenager discovers herself or himself to be someone else, different. A systematic
acceptance of this difference by the teenager is therefore necessary and to be
encouraged in psychotherapy or in parental coaching. This acceptance will occur if the
person has the necessary embryo of insight (the awareness of her or his condition).
Initially, at an early age, during childhood, the anosognosia remains pronounced, if not
total. The anosognosic haze remains the #1 barrier to the freedom from Asperger’s in
the child which explains the resistance to psychotherapy. The Asperger teen discovers
that he or she is different and embarks on an identity quest that will eventually lead to
the recognition and acceptance of his or her condition. The Asperger person is of
neuro-typical prevalence, but also his or her normality is altered by residual autism.
common in Asperger syndrome as opposed to the “aloof and passive” manner typical of high-
functioning. Question 9 reflected the clinical impression that persons with AS tend to speak fluently by
three years of age and sometimes even earlier, while question 10 referred to the fact that in many cases,
features of AS become more apparent as the child grows older, usually by 7-8 years of age. »
12 Attwood, T. (circa 2017. Unpublished document). The New DSM-5 Diagnostic Criteria for Autism
Spectrum Disorder.
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Conversely, the ASD person (of the high-functioning autism type, either of Kanner
profile without ID or PDD-NOS), is of autistic prevalence, but in partial and slow
spectral emergence. Located at the end of the autistic spectrum, in a border area,
the AS has its own identity, its distinct configuration. And which requires
specific answers. And which also requires a separate and specific category in
the DSM.
Tony Attwood says13:
« Developmentally speaking, Asperger’s syndrome is an unfinished autism condition. It
results of an autistic imprint in the structure of personality that has not fully developed to its entire span
and size. It is a mixed outcome combining normal acquisitions with some pathological autistic ones. It’s
a mitigated condition. While other profiles on the spectrum share a full set of common characteristics,
only varying in degrees of severity. Aspergers lack significantly some of those core traits. (…) For
the sake of comparison, put side by side a 3-year old Asperger child with a 3-year-old autistic Kanner-
type child, and you have two entirely different realities. For these reasons, Asperger syndrome has to
be kept a separate entity within the autism spectrum disorders”.
In the case of Asperger's syndrome, the person is basically neuro-typical, but
his or her "normality" is altered by spectral autism. During childhood, this condition of
“normality” may be only partially emergent, as it is masked by comorbidities, often
virulent (e.g., tantrums, sleep disorders, eating disorders). A capricious force of
movement...a rugged and incongruous terrain. A condition which is quite disconcerting
in childhood…
When looking at the Asperger condition in adults, there is no standard
prototype. Autism does not affect the Asperger condition in the same way that it
imposes its merciless imprint in the case of Kanner and PDD-NOS conditions, by
subjugating them (Autism penetrates them, it subdues them). In the case of Asperger,
autism colors, disturbs, resulting in profiles each multiplied by a kind of kaleidoscope
effect, which produces infinite combinations of positive and negative atypia,
fragmented, infinitely configured, in as many forms as there are people, making it
impossible to map the condition except in general terms.
Spectral migration on one side of the spectrum; the impermeability of the
neurotypical border, of the other
Another phenomenon ignored by current diagnostic practices is spectral
migration. Under the combined effect of developmental maturation, systematic
stimulation, learning and, in general, acculturation, development occurs, progresses
and reclaims its growth. Spectral autism (unlike classic autism disorder) of the Kanner
type without ID or PPD-NOS, slowly settles down over the years, recedes, weakens
with the passage of time. The first profile migrates to the second; the second to the
Asperger plateau. This emergence is characterized by a progressive unblocking of
intelligence. Indeed, intelligence escaping the constraints of autism becomes the lever
of development, in the semi-free zone of the Asperger pre-plateau.
13 Idem.
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Be the key reference for parents of Asperger children
The slow odyssey of the person with mild spectral autism ends on this plateau,
overlooking the autistic spectrum, upstream of the neurotypical state. A rebalancing of
the interface with the environment will be acquired, a kind of closure that puts an end
to the torments of an identity quest often pursued for years. A quest broadly similar
from one person to another, except for a few variations. And marked by developing,
over the years, a convenient avatar within the neurotypical community…since one
must adapt.
But the border with normality is not porous, the complete elimination of autism
is not possible. The Asperger profile is the terminal stage of the autistic spectrum, an
atypical autism.
Early detection
The unborn Asperger child can receive no better gift than early detection and
diagnosis. Of course, the child is not perceived as autistic at first, but rather, strange.
Thus, through the diagnosis, its "difference" is soon identified and understood; the
alternative causes are discarded. The support plan may be developed according to
the direction dictated by the Asperger condition. We know that help provided during
early childhood can make a huge difference in later life. And this help must be constant
and diligent throughout the growing years. The education of an Asperger child will not
be improvised: the specificity of the condition demands a specificity of the response.
There is consensus on the following point: the Asperger child, because of its
intelligence, because of the mild autism it carries, must receive a form of stimulation
and supervision adapted to it. It is therefore obvious that a precise identification of the
condition will result in a specific intervention plan and this, for the well-being of the
child, its parents and of society. We have compiled a bibliography of over 250 titles of
books dealing directly or indirectly with this issue; it is available on request14.
Insight: its genesis
The acquisition of insight in an Asperger child is a long process. Very early on,
around the age of 7-8, the child must be made aware its condition and start to be
exposed to the slow discovery of itself. It will take years to complete this process. What
we are looking at here is developmental anosognosia: this situation will diminish and
regress through education, acculturation, experiences lived and gained, formal
support, parental or other. In particular, the acquisition of the "theory of mind" will
catalyze this development. We know that girls awaken earlier and progress faster than
boys.
It is difficult to think that the Asperger child would thus be made to assume a
condition that would not be officially recognized. Or believe that the Asperger child
could be satisfied with a wording of its condition that would be ambiguous, imprecise,
14
APEA, Bibliography on the Asperger child, 2017 (in French). Updated in 2019.
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Be the key reference for parents of Asperger children
of the type "autistic syndrome spectrum" (ASD), as it appears in DSM-5, or "neuro-
atypical" as it is advocated by a certain egalitarian ideology. The Asperger condition in
children is described and detailed in many texts. For instance, in this little booklet
written by an Asperger, available on the WEB, the "specific" language, motor skills,
character traits and social functions of the Asperger child are discussed15. Clearly,
early stimulation is required to this specific condition and is quite different from that
required by classic and basic autism.
Syndrome or Profile?
We question the use of the construct "syndrome" to identify the Asperger
condition. Indeed, the notion of a syndrome refers to "a group of symptoms that
collectively characterize a disorder, or other condition considered abnormal" (The Free
Dictionary16). Merriam-Webster adds: "a set of concurrent things that usually form an
identifiable pattern"17. Asperger's is not an abnormality, it's a difference. In fact, the
Asperger person is predominantly neurotypical, but is impaired by a limited amount of
autism. Moreover, neither the notion of a collection of symptoms nor the idea of an
identifiable pattern fit the Asperger reality. For a simple reason: the multiplicity of
symptoms, the plurality of forms that the Asperger condition assumes are such that
the DSM-IV could not, at the time, articulate a set of criteria that would have made the
condition clear and explicit and, as such, graspable by clinical instrumentation, which
is of course the case of autism in all its forms and degrees of severity.
In this context, we believe that the proposal put forth by the Asperger/Autism
Network (AANE) to designate the condition as a profile is pertinent. See the AANE
Glossary (https://www.aane.org/glossary/).
Asperger Profile: A name that AANE is choosing to use to describe the constellation of
characteristics that was formerly known as Asperger Syndrome (AS). AS no longer exists as a formal
diagnosis defined by the medical and psychiatric community, which subsumed the diagnosis under the
larger “Autism Spectrum Disorder” umbrella in the 5th edition of the Diagnostic and Statistical Manual
(DSM-5). AANE has chosen the term Asperger profile to identify the challenges and recognize the gifts
of those who previously could have fallen under the AS label. Many people with an Asperger profile can
leverage their cognitive abilities and other talents to compensate for the challenges that they face. As
an Asperger profile can profoundly impact people throughout their lives, many still can benefit from a
variety of Asperger supports. Because of their atypical combination of significant strengths and
challenges, people with an Asperger profile are often misunderstood, and their challenges either go
unrecognized, or they are misdiagnosed.
15 Bernard, M. (2012). Symptomatology of Asperger syndrome in the child (in French).
http://sebastienvaumoron.com/data/documents/Symptomatique-du-syndrome-dAsperger-chez-
lenfant.pdf
16 The Free Dictionary by Farlex. https://www.thefreedictionary.com/syndrome .
17 Merriam-Webster Dictionary. https://www.merriam-webster.com/dictionary/syndrome .
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Alarming over-diagnoses?
It is alleged that clinicians in various parts of the world over-diagnose autism.
Nothing could be more false. For example, the study by Rodgaard et al.18 has led to
alarmist screams about the over-diagnosis of autism. This cluster of meta-analyses
claims to have shown that autism is diagnosed based on less and less marked signs
and that autistic persons are less and less different from the general population.
Rather than cry wolf, we must hear the complaint, the suffering of adults
looking for a ray of light to shed on the possibility of them carrying a mild or moderate
form of autism. We must also feel the pain of parents who are powerless in the face of
their child's developmental disabilities, the failure of their growth. The experience of
those who visit autism evaluation centers confirms one thing: the diagnoses made are,
in the majority of cases, rigorous, based on solid evidence and valid.
The essence of the mystery revealed by the above study is clear: autism is
growing, and its forms are not only mixed, but almost infinitely diverse.
Thus, there is a disconnect between the Rodgaard et al. study and the public
use that was made of it. The comments heard on the alleged diagnostic abuses border
on caricature. It is patently wrong to claim that the diagnoses increasingly cover
borderline cases. Why? Simply because it is autism that is more prevalent and more
diverse than ever before. In a statement, the Quebec Federation of Autism refutes the
allegations made19. In addition, diagnostic practices are strictly regulated by ethical
standards and to suggest that there is laxity is baseless. The following is a public
statement made by CASDA (Canadian Autism Spectrum Disorder Alliance) as
communicated by Nathalie Garcin PhD of the Spectrum Group20:
Autism Spectrum Disorder ("ASD") is indeed a « spectrum » of neurodevelopmental
conditions that vary in terms of presentation, such as - social/communication deficits and restricted
or repetitive behaviors. The vast variability and many “autisms” make it difficult to understand the
neurobiological, genetic and cognitive mechanisms of ASD differences. To report, as the CBC &
National Post did in their recent articles, that the criteria for diagnosis have become "trivial" is
misleading and couldn't be further from the truth. Indeed, this view was apparently held by one
researcher who made such a statement more as hyperbole than as a clinical statement based on
evidence. Symptom presentation varies from one person to the next, however, in order to be
properly diagnosed, professionals must ultimately consider whether the individual’s
symptomatology significantly impacts their functioning. This is the same for other conditions such
18 The article “Temporal changes in effect sizes of studies comparing individuals with and without
autism: a meta-analysis”, Rodgaard E.-M. et al., was published on August 21, 2019 in JAMA Psychiatry.
https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2747847?guestAccessKey=1722f239-
1dda-42d5-bcc9-
dbe33edd3fe0&utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_
content=tfl&utm_term=082119
19 Fédération québécoise de l’autisme. Communiqué du 22 août 2019: des autistes qui n’en sont pas:
attention aux débordements. Communication@autisme.qc.ca
20 Garcin, N. (2019). Personal communication.
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Be the key reference for parents of Asperger children
as, for example, depression. However, we would never deny a person with a milder form of
depression the support they need to achieve well-being. Such a diagnosis- when properly
performed- is the result of the application of standardized testing with evidence-based assessment
tools including direct observation assessment and targeted developmental history that takes over
ten hours of individual assessment by an interdisciplinary team including physicians, psychologists,
behavior analysts, speech and language pathologists and other professionals. To suggest, as the
researcher apparently did in interviews post-publication, that people are diagnosed with ASD
because they simply avert eye gaze or are bothered by tags on their clothing is irresponsible, and
if true would be a violation of ethical and diagnostic practice guidelines endorsed by professional
colleges. Moreover, it undermines the lived experience of Autistic Canadians and their families and
has deterred from the issue: one of support needs for individuals with neurodevelopmental issues
on Canada.
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Chapter 3
The Sociological Bases of Asperger’s syndrome
Despite their difficulty in establishing social relationships, Aspergers are
known to be able to come together, online21 or in person, because they share one thing
in common: their diagnosis22. They recognize each other and they fraternize. However,
due to the disappearance of the "Asperger’s syndrome" diagnosis in DSM-5, this
prospect has been compromised. Sahnoun and Rosier (2012)23 conducted a survey
of individuals and groups who expressed reluctance about the disappearance of
Asperger's syndrome in DSM-5. Many are worried about what will happen to the
'aspergoid' subculture formed over the years; we wonder how Aspergers will
compensate for the disappearance of their diagnostic place in the agora of mental
conditions, the very one with which they identify.
In studies conducted by Spillers (2014)24, Kite (2012)25 and Vivanti (2013)26,
several arguments regarding the cultural and identity aspects of Asperger’s syndrome
overlap. In particular, it is often mentioned that there is a difference between autism
and Asperger’s syndrome in the way they are perceived in society in general: autism
is viewed as a much more severe condition requiring more services and interventions
than Asperger’s syndrome. Autism is often associated with intellectual disability, while
an Asperger is instead perceived as intellectually bright. Some respondents in the
Spillers (2014) and Kite (2012) studies "were concerned about identity, services, and
how they might maintain their identity and services, regardless of changes in DSM–5”.
Due to this difference in perception between the two diagnoses, a distinct Aspie culture
has developed over the years. It is important to note that the term "Aspie" adopted by
the community itself clearly demonstrates an identity attachment:
21 A list of blogs, in Addendum 2, provides a picture of this activity (English and French).
22 Asperger Syndrome and Social Relationships, Adults Speak Out about Asperger Syndrome,
Genevieve Edmonds, 2008
23 Lilia Sahnoun & Antoine Rosier, “Asperger Syndrome: the stakes of a disappearance” (in French)
PSN. Psychiatre, Sciences humaines, Neurosciences [en ligne]. Nouvelle série, vol. 10, n° 1, octobre
2012, Paris, Éditions Matériologiques, p. 25-33. Mis en ligne en octobre 2012. URL:
www.materiologiques.com
24 Jessica L. H. Spillers, Leonard M. Sensui & Kristen F. Linton (2014) Concerns About Identity and
Services Among People with Autism and Asperger's Regarding DSM–5 Changes, Journal of Social
Work in Disability & Rehabilitation, 13:3, 247-260, DOI: 10.1080/1536710X.2014.912186
25 M. Kite, Donna & Gullifer, Judith & Tyson, Graham. (2013). Views on the Diagnostic Labels of Autism
and Asperger’s Disorder and the Proposed Changes in the DSM. Journal of Autism and Developmental
Disorders. 43. 10.1007/s10803-012-1718-2.
26 Vivanti, G., Hudry, K., Trembath, D., Barbaro, J., Richdale, A., & Dissanayake, C. (2013). Towards
the DSM–5 criteria for autism: Clinical, cultural, and research implications. Australian Psychologist, 48,
258–261. doi:10.1111=ap.12008
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Be the key reference for parents of Asperger children
Many people currently diagnosed with the latter condition do not see themselves as
having autism, but rather identify themselves as a specific cultural minority (i.e., the
“Aspie” culture; see websites such as aspieweb.net, wrongplanet.net, or
aspieworld.net).27
Membership in this sub-culture is an important identity factor. This sub-culture
disassociates itself from basic low-functioning autism. Spillers writes that Aspergers
seek to assert their difference in a positive way and do so by using this term. Few
studies address the issue of Asperger's identity and culture. We believe, however, that
such a culture still thrives, 6 years onward, despite the disappearance of Asperger's
syndrome in DSM-5. Several books on Asperger's syndrome were published after the
release of the DSM-5 in 2013. In a list on childhood Asperger’s syndrome compiled by
the Autism & Asperger Clinic in Montreal, 83 of the 233 books listed were published in
or after 2013. Furthermore, the word Asperger still persists in popular culture such as
in some recent television shows like Good Doctor or Atypical which still use this
syndrome and where characters who are Aspergers are portrayed.
The term "Asperger’s syndrome" is still ubiquitous in Western society despite
its disappearance from the DSM-5 and some people still congregate around the
"Aspie" culture. We counted a total of 95 Facebook groups in English and French that
had the word "Asperger" in their titles and a total of 93 groups in English and French
that had the word "Aspie". Preliminary findings from an ongoing study in sociology at
the University of Montreal also point in this direction (Laflamme, 2019)28:
Finally, it seems that Asperger's syndrome is still an important identity reference for some
people with autism. Indeed, a majority of the twenty autistic women I met in Quebec and
France, almost all diagnosed after 2013, use the term "Asperger" to define their own
condition. Many use this term interchangeably with autism or merge them both and use
the term " Asperger Autism". Finally, some participants mention that it was specifically
the discovery of Asperger's syndrome that enabled them to identify with ASD, as they
had not been able to recognize themselves in what they had previously known of "classic"
autism or with the results of their preliminary research on it.
27 Vivanti (2013), p.260.
28 Maude Laflamme, doctoral student in Sociology, 2019. Personal communication.
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Chapter 4
Conclusion and Recommendations
The current DSM-5 classification for autism causes harm to mildly affected
people, such as those with Asperger's syndrome.
In a GME (Global Medical Education)29 video, Dr. Michael First, professor of
Clinical Psychiatry at Columbia University, talks about the withdrawal of Asperger's
syndrome from the DSM as a real loss for the “Aspie” community, as it is considered
one of the rare de-stigmatized conditions of the DSM ("a good label rather that a
stigmatizing label"). In addition, he points out that the increase in the level of diagnostic
criteria of social communication (from 2 out of 4 required by the DSM-IV to 3 out of 3
in the DSM-5) will result in the loss of services for some 9% of children and adults
diagnosed with the condition, because they have become "false positive cases". His
concern is also directed at the strange note regarding the new wording of DSM-5 which
states that people who had previously been diagnosed with Asperger's (or PDD-NOS)
should automatically be recognized as an ASD - a unsavory bandage to limit the
hemorrhage caused by the transformation from IV to 5 – and which undermines the
credibility of the new ASD concept and the DSM itself as a diagnostic tool.
Attwood (unpublished document, circa 2017) opines:
Removal of the term Asperger’s syndrome has negatively affected the self-identity of adults who have
benefited from the term, created self-support groups and accessed literature and Internet support
groups based on common characteristics and experiences. Clinical experience has indicated that the
majority of adults with Asperger’s syndrome and their families want to maintain the term.
The term Asperger’s syndrome generates a mostly neutral understanding and attitude in the general
community and media. Those achieving a diagnosis are less likely to reject that diagnosis due to
negative preconceptions or a perception of having a severe or debilitating mental disorder. When an
adult who has previously had a diagnosis of Asperger’s syndrome now describes him- or herself as
having autism, they may not be believed, as the general population considers the term autism to be
associated with severe disability.
Parents of school-age children could be reluctant to contemplate a diagnostic assessment for autism,
as this term is currently associated with children with very high support needs and a very limited
prognosis. Adults may be reluctant to cooperate with a suggestion of, or referral for, a diagnostic
assessment for autism when they do not consider they have the characteristics and abilities associated
with the popular understanding of the term.
An unexpected phenomenon has emerged since the adoption of the DSM-5 and
its ASD construct. Some Aspergers call themselves downright autistic, while others,
less radical, call themselves "autistic Aspergers”. In order to better claim their rights,
29 DSM-5 Autism Spectrum Disorder. https://www.gmeded.com/dsm-5/dsm-5-autism-spectrum-
disorder
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which are sometimes threatened, rights that are certainly legitimate, and to have a
stronger impact on authorities and individuals, the expression "me/us, autistic
Aspergers" is shortened and becomes "me/us, autistics". It therefore entails that
Aspergers display themselves as autistic during individual litigation or conflicts, and
imperatively insist on using this status and this unambiguous wording, which is a far
cry from the perceived reality of their condition. This situation will generally be met with
skepticism by employers and by the average person, the man on the street who has
another idea of what autism is. One of the effects of this practice is that it obscures the
condition of heavy autism, that is, those who are truly autistic, with or without a mental
disability. It is them who cannot value themselves, defend themselves, promote their
"difference". The situation is close to identity theft. It creates a misconception that
harms the cause of autism, its just recognition for the purposes of, for example, access
to employment.
An author (circa 2017) pointed out the value of a clear, unambiguous and
explicit terminology of autism in all its forms.
Being diagnosed as having autism, Asperger syndrome, or pervasive developmental disorder
(PDD) not otherwise specified has great practical, clinical, psychological, cultural, economic,
and even political significance.
From a practical and clinical standpoint, the diagnostic classification determines who gets
and is likely to benefit from treatment.
From a psychological standpoint, it provides parents and children some sense of closure
and, because prognosis is related to diagnosis, can result in some reduction in anxiety. For
other parents, the diagnosis opens the door to greater anxiety as they face a fragmented set
of treatment, educational, and family support services with unclear eligibility, transitions, and
handoffs. From a cultural standpoint, diagnosis relates to the formation of groups around
biological identities based on shared or common biological conditions.
From an economic standpoint, setting thresholds based on diagnostic criteria is how state-
run health care systems and insurance companies ration care.
From a political standpoint, it is how people organize themselves to exert political advocacy
on behalf of those who share this burden.
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The concept of the autistic spectrum (ASD) originated in an article by Doris A.
Allen, published in 198830. She outlined the spectral nature of a set of autistoid
dysfunctions in pre-school children without, however, proposing an appropriate scale,
an autism spectroscopy. The concept of ASD was subsequently extended to other age
groups when the DSM-5 was published in 2013. However, this concept has not been
validated in other populations, such as children aged 5 to 11, adolescents, young
adults, and the other ages of life: middle-aged adults, women and men, older adults,
separately. Nor was it validated in very slightly affected individuals - the borderline
cases. The concept of autistic spectrum entered the DSM-5 without the necessary
validations for the range of autistic conditions of all ages and both sexes.
30 Doris Allen is the author of: Autistic Spectrum Disorders: Clinical Presentation in Preschool Children,
3C April 1988, Child Neurol, 3 (Suppl), p. 48-56. Surprisingly, in her article developed to demonstrate
the spectral character of childhood autism, Professor Allen introduces 5 subtypes of autism, in apparent
breakdown with its notion of spectral continuity/homogeneity, the last of which corresponds to Asperger
syndrome in children.
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Be the key reference for parents of Asperger children
Chapter 5
WE REQUEST
The following proposal concerns the naming of Autism Disorders, the Asperger
condition and its related criteria.
We request modifications to the original DSM-5, as expressed in the following
DSM-5 TR (Text Revised) proposal. These modifications to the DSM-5 are necessary
in order to improve the lives of those affected by the condition of high-functioning
autism spectrum disorders. This condition is now split into two groups.
Henceforth, we must refer to Autism Spectrum Disorders in a plural form,
not in a singular form.
Henceforth, we must distinguish two forms of such Disorders, Typical and
Atypical: typical high-functioning autistic disorders on the one hand, and the
atypical Asperger high-functioning disorder on the other.
Henceforth, an Asperger person will be an Aspie (Aspi in French) and their
condition will no longer be a syndrome, but rather a profile.
Henceforth, the Aspie/Aspi profile will be subject to a holistic-based31
identification and not a criteria-based identification.
31 The Free Dictionary by Farlex states (https://www.thefreedictionary.com/holistic): “holistic means: a.
Emphasizing the importance of the whole and the interdependence of its parts. b. Concerned with
wholes rather than analysis or separation into parts: holistic medicine; holistic ecology, holistic
psychology.
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Chapter 6
Proposed text
DSM-5 TR32
Autism Spectrum Disorders
Autism Spectrum Disorders
299.01/299.02
Diagnostic Criteria
Two groups of ASD individuals are identifiable: high-functioning autistics, and
(previously called) Aspergers. First group (299.01) and Second group individuals
(299.02) are differentiated on the basis of tests such as The Michigan Autism Spectrum
Quotient Test (Ghaziuddin & Welch, 2013)33.
First Group (children, adolescents, and adults): Typical Autism Spectrum
Disorder. Criteria are (as in the Addendum 1):
A. Persistent deficits in social communication and social interaction...etc.
B. Restrictive, repetitive patterns of behavior, interests…etc.
C. Symptoms must be present in the early developmental period…etc.
D. Symptoms cause clinically significant impairment in social…etc.
E. These disturbances are not better explained…etc.
Specify the severity level (1, 2, or 3).
Second group (children, adolescents, adults): Atypical Autism Spectrum
Disorder (early and late), previously referred to as Asperger’s syndrome and now
called Aspie/Aspi Profile. Criteria are:
Criteria A, B, C, D, and E are an integral part of the assessment procedure
which remains holistic, in within the use of psychometric instrumentation for a global,
valid, and reliable capture of confirming signs of the condition, such as the Baron-
Cohen Screening Tests series or diagnostic tests like the RAADS, and numerous
others available on-line.
32 DSM-5-TR: Text Revised
33 M. Ghaziuddin, and K. Welch (2013). The Michigan Autism Spectrum Questionnaire: A Rating Scale
for High-Functioning Autism Spectrum Disorders. https://www.hindawi.com/journals/aurt/2013/708273/
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Other aspects taken into considerations are:
F. Against a background of normality, the child/adolescent/adult presents multiple,
disparate and aggravated atypia and comorbidities such as ADHD, food
selectivity, sleep disorders, eye contact disorder, anxiety disorders, mood
disorders (including anger and tantrums), affect disorders (flat or exalted affect),
etc.34The child/adolescent/adult also presents peaks of skills (exceptionally, a
savant syndrome) such as drawing, painting, music, sculpture, hyperlexia,
hyperliteracy, early language, encyclopedic memory, foreign accent, ability to
acquire a second language, etc.
G. Against a background of normality, the adult (male or female) can compose
without help an explicit and elaborate written or verbal account of the difficulties
experienced and of his or her subsequent quest for identity. An evocation of his
or her atypical childhood is required. A psychometry of his or her insight of the
condition confirms the ongoing decrease of autistic anosognosia.
H. Against a background of normality, the adult woman may have androgynous
features and appear eccentric. She is seen as cold and self-centered. She has
little interest in makeup, hairdressing or shopping. She doesn't like to be
touched. She may have an interest in science, computer sciences design,
writing, languages, psychology. She has often been diagnosed with BPD
(Borderline Personality Disorder). She only cultivates one or two friendships.
She gives herself exhausting neuro-typical roles; she is good at disguising
herself as a neuro-typical person; she comes out of hiding only when she gives
birth to a child on the spectrum.
Severity levels: 1 or 2
34 Other comorbidities have also been observed in children: impaired executive efficiency, loss of
autonomy, oppositional disorders, ruminations, obsessive-compulsive disorders, hording disorders,
bipolar disorders, gender dysphoria, tics, pica, mannerisms, stereotypies and repetitive behaviors
including trichotillomania, phobias, misophonia, rigidities, self-stimulation, self-mutilation, oral
communication disorders (absence or limitation of language, selective mutism) including echolalia,
expressive and receptive language disorders, sensory defenses (hyperesthesia) and conversely
hyposensiorality, relational and socialization disorders, fine and gross motor skills disorders, writing
disorders (and other learning disabilities), reactive disorders of attachment, prosopagnosia disorders
(face recognition), episodes of depersonalization, derealization, hallucinations, delusions, etc.
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Chapter 7
International Petition
As an Asperger person, a parent, a supporter and friend of the cause, I
support APEA's request to DSM-5 authorities for the reinstatement of
"Asperger's syndrome" in the ASD nomenclature, under the term “Aspie
Profile”
Ctrl + Click here to sign the petition
(this is a private or closed petition – only those who have been asked will be able to sign)
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Addendum 1
(actual text)
Autism Spectrum Disorder
DSM-5 Diagnostic Criteria
A. Persistent deficits in social communication and social interaction across multiple
contexts, as manifested by the following, currently or by history (examples are
illustrative, not exhaustive)
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal
social approach and failure of normal back-and-forth conversation; to
reduced sharing of interests, emotions, or affect; to failure to initiate or
respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction,
ranging for example, from poorly integrated verbal and nonverbal
communication; to abnormalities in eye contact and body language or
deficits in understanding and use of gestures; to a total lack of facial
expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships,
ranging, for example, from difficulties adjusting behavior to suit various
social contexts; to difficulties in sharing imaginative play or in making
friends; to absence of interest in peers.
Specify current severity:
Severity is based on social communication impairments and restricted,
repetitive patterns of behavior (see Table 2).
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested
by at least two or the following, currently or by history (examples are illustrative,
not exhaustive; see text):
1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g.,
simple motor stereotypies, lining up toys or flipping objects, echolalia,
idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized
patterns of verbal or nonverbal behavior (e.g., extreme distress at small
changes, difficulties with transitions, rigid thinking patterns, greeting rituals,
need to take some route or eat same food every day).
30
Be the key reference for parents of Asperger children
3. Highly restricted, fixated interests that are abnormal in intensity or focus
(e.g., strong attachment to or preoccupation with unusual objects,
excessively circumscribed or perseverative interests).
4. Hyper- or hypo reactivity to sensory input or unusual interest in sensory
aspects of the environment (e.g., apparent indifference to pain/temperature,
adverse response to specific sounds or textures, excessive smelling or
touching of objects, visual fascination with lights or movement).
Specify current severity:
Severity is based on social communication impairments and restricted,
repetitive patterns of behavior (see Table 2).
C. Symptoms must be present in the early developmental period (but may not
become fully manifest until social demands exceed limited capacities or may be
masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other
important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual
developmental disorder) or global developmental delay. Intellectual disability and
autism spectrum disorder frequently co-occur; to make comorbid diagnoses of
autism spectrum disorder and intellectual disability, social communication should
be below that expected for general developmental level.
31
TABLE 2 Severity levels for autism spectrum disorder
Severity level Social communication
Restricted, repetitive
behaviors
Level 3
“Requiring very
substantial support”
Severe deficits in verbal and
nonverbal social communication
skills cause severe impairments in
functioning, very limited initiation
of social interactions, and minimal
response to social overtures from
others. For example, a person with
few words of intelligible speech
who rarely initiates interaction and,
when he or she does, makes
unusual approaches to meet
needs only and responds to only
very direct social approaches.
Inflexibility of behavior, extreme
difficulty coping with change, or
other restricted/repetitive behaviors
markedly interfere with functioning in
all spheres. Great distress/difficulty
changing focus or action
Level 2
“Requiring substantial
support”
Marked deficits in verbal and
nonverbal social communication
skills; social impairments apparent
even with supports in place;
limited initiation of social
interactions; and reduced or
abnormal responses to social
overtures from others. For
example, a person who speaks
simple sentences, whose
interaction is limited to narrow
special interests, and who has
markedly odd nonverbal
communication.
Inflexibility of behavior, difficulty
coping with change, or other
restricted/repetitive behaviors
appear frequently enough to be
obvious to the casual observer and
interfere with functioning in a variety
of contexts. Distress and/or difficulty
changing focus or action.
Level 1
“Requiring support”
Without supports in place, deficits
in social communication cause
noticeable impairments. Difficulty
initiating social interactions, and
clear examples of atypical or
unsuccessful responses to social
overtures of others. May appear to
have decreased interest in social
interactions. For example, a
person who is able to speak in full
sentences and engages in
communication but whose to-and-
fro conversation with others fails,
and whose attempts to make
friends are odd and typically
unsuccessful.
Inflexibility of behavior causes
significant interference with
functioning in one or more contexts.
Difficulty switching between
activities. Problems of organization
and planning hamper independence.
32
Addendum 2
Blogs Visited by Aspies
Blogs in English
Numerous English blogs (over 100):
https://anautismobserver.wordpress.com/
Other blogs:
- Asperger/Autism Network: https://www.aane.org/blog/
- Psychology today: https://www.psychologytoday.com/us/blog/aspergers-
diary
- Life with Aspergers: https://life-with-aspergers.blogspot.com/
- Confessions of an Asperger’s Mom:
https://confessionsofanaspergersmom.blogspot.com/
- Thoughts of an Introverted Matriarch: https://inneraspie.blogspot.com/
- AStrangerInGodzone: https://strangeringodzone.blogspot.com/
- Aspergers 101: https://aspergers101.com/
- Her autism: https://herautism.com/blog/
- The Autism Dad: https://www.theautismdad.com/blog/
Blogs in French
Fédération Québécoise de l’Autisme [FQA]:
- http://www.autisme.qc.ca/tsa/je-suis-autiste/adolescent-ou-
adulte/blogs.html
- http://www.autisme.qc.ca/ressources/ressources-hors-quebec/sites-
europeens.html
Liste de blogues fournis par l’Association Francophone des Femmes
Autistes [AFFA], en France:
- https://femmesautistesfrancophones.com/2017/03/02/blogs-et-medias-
traitant-de-troubles-du-spectre-autistique/
Site d’une association en France :
- https://www.asperger-amitie.com/
33
https://www.netvibes.com/cra-lorraine#accueil
Blogue d’un Français :
- https://aspieconseil.com/blog/
Liste de blogues à travers le monde :
http://www.asperger-integration.com/les-liens.html#WFC
- https://lautisterique.blogspot.com/
Blogue français :
http://emoiemoietmoi.over-blog.com/petite-m%8Etaphore-%88-l-usage-des-
neurotypiques
Blogues suisse et français :
https://blogs.lexpress.fr/the-autist/2013/08/26/a-lusage-des-autistes-asperger-
guide-de-survie-en-territoire-humain/
https://letremplin-isere.org/en-savoir-plus/liens
Autres blogues :
- http://www.regard9.ca/blogueR9/2017/04/autisme-asperger-diagnostic-
adulte/
- http://les-tribulations-dune-aspergirl.com/
- http://les-tribulations-dun-petit-zebre.com/
- http://52semaspie.blogspot.com/p/sommaire-des-thematiques-de-la-
phase-2.html
- https://royaumeasperger.com/2016/07/07/autiste-asperger-versus-
neurotypique-10-trucs-pour-mieux-se-comprendre/
- https://quebec.huffingtonpost.ca/josae-durocher/autiste-asperger-femme-
aspergirls-groupes-web_a_23652705/
- https://femmesautistesfrancophones.com/2017/10/11/caracteristiques-
des-adolescentes-autistes-de-haut-niveau-ou-asperger/
- https://monmodedevie.ca/2018/01/25/je-suis-un-aspie/
34
Addendum 3
Position Paper Authors
Normand Giroux Ph. D. Psychologist, member of the Board of Directors of the
APEA
Nina Thomas, B.A., B. Ed., member of the Board of Directors of the APEA
Roxanne Latraverse, Admin. Student and member of the Board of Directors of
the APEA
Note: Document translated from the original French (Québec) by Jacques Lafortune
35
Addendum 4
ARTICLES
Sampling of articles published within the past 12 months concerning
the DSM-5 and Asperger’s syndrome.
1) https://link.springer.com/article/10.1007%2Fs10803-018-3689-4
“…it could be meaningful to introduce an additional “subtype specifiers” (i.e., Autistic
Disorder or Asperger’s disorders)… »
2) https://openaccess.leidenuniv.nl/handle/1887/76975
« current conceptualisation of autism as ‘Autism Spectrum Disorder’ is both inaccurate
and dangerous. »
3) https://www.tandfonline.com/doi/full/10.1080/09687599.2019.1649121?scr
oll=top&needAccess=true
The removal of AS goes against those who call themselves Asperger
4) https://ojs.lib.uwo.ca/index.php/wupj/article/view/7907/6516
We question here the validity of the DSM-5 with regards to the accuracy of the
diagnostics provided for Pervasive Developmental Disorders… thus casting doubt of the
classifications related to ASD
5) https://www.ceeol.com/search/article-detail?id=757774
This article still refers to « Asperger Syndrome » in its research
6) https://scholarworks.waldenu.edu/dissertations/6657/
The impact of the new DSM-5 construct on mothers of Asperger children
36
7) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6408183/
This article is written in Turkish, but in the introduction « Dear Editor », the author
mentions this :
« In 2013, the DSM-5 erased all five mentioned diagnostic subcategories of the DSM-IV,
proposing a single, all-embracing category of Autism Spectrum Disorder, subdivided into
3 severity degrees (5). In our opinion, this subdivision does not reflect the great clinical
heterogeneity of the disorder, and therefore the DSM-5 autism classification requires
improvements. »
8) https://insar.confex.com/insar/2018/webprogram/Paper27786.html
Title of a presentation given at last year’s INSAR (International Society for Autism
Research) conference :
« Structural MRI Does Not Support the DSM-5 Unification of the DSM-VI-TR Autism
Spectrum Diagnoses »
9) https://www.tandfonline.com/doi/abs/10.1080/20473869.2018.1542561
The article questions the validity of the ASD grouping and suggests further study to
determine if having « distinct subtypes or a severity gradient model? » would be useful
10) https://www.sciencesetavenir.fr/sante/cerveau-et-psy/journee-mondiale-
de-sensibilisation-a-l-autisme-quatre-pistes-pour-guerir-ce-
trouble_122635
This article, from the prestigious Sciences et avenir magazine (France) contains this
passage where Dr. Philippe Raymond is quoted:
Because they are often endowed with exceptional cognitive abilities - intelligence,
synesthesia, memory-Asperger autists are the tree that hides the autistic forest. Yet there
is a world between them. "They were put in the same group because they all suffer from
social interaction difficulties. But, from my point of view, takes exception Dr. Philippe
Raymond, a member of the Chronimed task force, it's not the same thing at all and it's a
“scam“ to classify them as autistic”. They are also distinguished, although often confused,
from the so-called neurotypical high level autistics. In fact, Aspergers manage to integrate
socially and most say, "I am very well as I am", states Florent Chapel, author of Autisme:
La grande enquête (Autism: The Large-Scale Survey). Some specialists argue for a
requalification of this disorder and a removal from the autistic field. (translated from the original
French by J.L.)

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Position Paper of the APEA_EN

  • 1. Position Paper of the APEA For the Reintegration of « Asperger’s syndrome » in the DSM under the Name “Aspie Profile” Final Edition 08 11 2019 Fall 2019 © APEA
  • 2. 2 Be the key reference for parents of Asperger children My main reason for consulting is the lingering feeling that an invisible disability is holding me back for the next steps in my evolution. S., Male Adult Asperger June 2019 -------------------------------- The world in my head is a satellite of reality. C., Female Adult Asperger August 2019 -------------------------------- I always feel like I don’t belong. S., Female with PDD-NOS autism transiting toward Asperger June 2019 -------------------------------- The main events in childhood that occur to me have to do with sensory oversensitivity, social difficulties, self-stimulatory behavior, obsessions (connected to language acquisition), and obsessive-compulsive traits. Peripheral affairs include toe walking, language acquisition, executive impairments, parasomnias, and insomnia. (…) I toe walked as a child and still toe walk half the time I walk. I can stop when asked but I instinctively do it. (…) I also had severe social anxiety and mutism, sometimes whether I was anxious or not. I still have social anxiety, where I avoid being around people if there are visitors over, and mutism.(…) I have very serious problems organizing myself for any work and I’ve always been an absolute mess at home and school, and starting tasks is almost impossible for me while completing them after I’ve finally started becomes easy. (…) I have much more trouble speaking than I do writing. I stutter often when I speak, don’t have much expression or make many gestures, must stop and think a lot, but there is a secret remedy for my troubles, and it’s in writing. My mind, from its basic to highest thoughts, works by linguistic analogy, by bootstrapping linguistic knowledge and intuitions to any new situation, particularly written. While my speech is unrefined, I lose a lot of my speech problems if, instead of engaging in ad hoc speech, I use writing in my mind instead. That is, instead of speaking as an individual activity, I can speak much more clearly if I imagine myself writing what I want to say consciously and then speak not generatively, spontaneously, but by rehearsing the written words in my mind. I imagine the words the other person speaks as text to be read, and then imagine my response as written back, something somewhat epistolary. J., Autistic man (classic profile) having evolved as Asperger
  • 3. 3 Be the key reference for parents of Asperger children Dr. Tony Attwood’s Support On November 6, 2019, Dr. Tony Attwood, recognized as the world's foremost authority on Asperger's Syndrome, fully endorsed the Position Paper and adhered to its conclusions and recommendations. It was in an email sent to Dr. Isabelle Hénault, a colleague of Dr. Normand Giroux, lead author of the paper, that Dr. Attwood expressed his support. Here is the content: As to Normand et al.’s Position Paper. It is brilliant. It is probably the best position paper on Asperger’s syndrome and autism that I have ever read. The text is so insightful, eloquent and I agree totally with his perspective and recommendations. Please do pass on to Normand and colleagues my appreciation and request to help with the Position Paper in any way that I can. I would like to endorse and promote the document.
  • 4. 4 Be the key reference for parents of Asperger children Table of Contents Synopsis…………………………………………………………………………. 5 Chapter 1 Neuroanatomical Basis of the Asperger Condition………….. 6 • The clinical lighthouse, rescued by research…………….……………. 6 • Neuroanatomical and biochemical evidence……………….…………. 6 Chapter 2 Clinical Basis of the “Asperger’s syndrome” Condition…...… 9 • Novelty or confusion?......................................................................... 9 • A bogus integration……………………………………………...……….. 9 • Back to reality for the clinician…………………………………..………. 9 • The crack in the syllogism behind the ASD construct…………..……. 10 • Repercussion #1 of DSM-5: AS is ignored……………………..……… 10 • Repercussion #2: proliferation of differential diagnoses in the absence of a base condition…………………….………….. 11 • Repercussion #3: double-blind evaluation, clinical myopia, diagnostic presbyopia……………………………………….……… 11 • The Asperger condition – what is unique and exclusive about it…… 12 • Measure anosognosia, as a priority, to distinguish AS………………. 14 • Asperger's syndrome, an elusive difference for sure, but so real…… 14 • Spectral migration on one side of the spectrum; the impermeability of the neuro-typical border, of the other…….. 14 • Early detection……………………………………………………………. 16 • Insight: its genesis………………………………………………………... 16 • Syndrome or Profile?....................................... ................................... 17 • Alarming over-diagnoses?................................................................... 18 Chapter 3 The Sociological Bases of Asperger's Syndrome…………..….. 20 Chapter 4 Conclusion and Recommendations…………………………… 22 Chapter 5 WE REQUEST………………………………………...………… 25 Chapter 6 Proposed text for the DSM-5-TR………………………………. 26 Chapter 7 International Petition…………………………………………….. 28 Addenda 1. Autism Spectrum Disorder DSM-5 Diagnostic Criteria…….. 29 2. Blogs Visited by Aspies……………………………………….. 32 3. Position Paper Authors………………………………………... 34 4. List of articles…………………………………………………… 35
  • 5. 5 Be the key reference for parents of Asperger children Synopsis In 2013, the American Psychiatric Association (APA) removed Asperger’s syndrome (AS) as a unique and specifically described category from the DSM-IV and included the condition in a broader, less-defined continuum referred to as Autism Spectrum Disorder (ASD) in its DSM-5 publication. This single undertaking, albeit supported at the time by numerous experts, has been a disservice to the practitioner clinicians in the field and more importantly, prejudicial to Asperger people in society. Although the DSM-5 dates from 2013, a sample of current articles (since the last 12 months) on the subject clearly show that its acceptance is far from unanimous and confirms the validity of this Position Paper. The APEA (the French acronym from the Association of Parents of Asperger Children of Québec, Canada) submits this Position Paper which describes the current problems with AS being imbedded in the ASD continuum, argues the distinctiveness of the condition, states that it be called a profile (as does the AANE) rather than a syndrome and finally proposes a new definition of the condition. Based on solid evidence coupled with pertinent expert opinions, the Position Paper highlights the key damaging repercussions brought on by the DSM-5 classification and suggests that measuring the level of anosognosia be used as an efficient tool to distinguish AS. The APEA, through its spokesperson Dr. Normand Giroux, psychologist, respectfully submits this Position Paper with its corresponding proposal for review and consideration by the APA. The Association is available to discuss, participate in review committee activities and otherwise provide any further support information or clarifications which would advance this issue. The authors of the Position Paper are listed in Addendum 3. This Position Paper has the unconditional endorsement of Dr. Tony Attwood, the world’s leading expert on the subject of Asperger’s syndrome (see page 3). Furthermore, Dr. Temple Grandin, the internationally-recognized autism expert agrees on the reintegration of Asperger’s syndrome under the name Aspie profile.
  • 6. 6 Be the key reference for parents of Asperger children Chapter 1 Neuroanatomical Basis of the Asperger Condition The clinical lighthouse, rescued by research Until recently, markers for Asperger syndrome relied on clinical criteria. For the past 10 years, evidence has consistently emerged highlighting specific neuroanatomical markers differentiating Asperger syndrome from the rest of the autism spectrum even at the anatomical level. As such, based on the last ten years of research, as well as on extensive clinical experience and clear and undeniable sociological grounds, Asperger syndrome not only meets the criteria for a light mental disorder but also unambiguously displays a specific and exclusive difference which excludes any overlap with the condition known as High Functioning Autism. Unquestionably, the fact of not clearly distinguishing these two diagnostic groups causes great prejudice of AS persons who do not benefit from early treatment in order to reduce the risk factors. Furthermore, they do not benefit from special consideration for psycho-social assistance and adequate medico-legal consideration in adulthood. Neuroanatomical and biochemical evidence The important amount of meta-analyses confirms beyond a doubt the clear distinction between these two diagnostic groups (Asperger Syndrome and High Functioning Autism). Tsai & Ghaziuddin (2014)1, upon surveying literature pertaining to Asperger syndrome and Autism disorder, noted over 90 clinical variables differentiating the two conditions. Of 128 publications published between 1994 and 1 Tsai, L. Y., & Ghaziuddin, M. (2014). DSM-5 ASD moves forward into the past. Journal of Autism and Developmental Disorders, 44(2), 321–330.
  • 7. 7 Be the key reference for parents of Asperger children 2012, 94 such variables showed definite differences in neurocognitive profiles, motor and sensory functions, executive functions, comorbidities and treatment outcomes among other aspects. Faridi and Khosrowabadi (2017)2 confirmed these findings and brought more information to light in their own review paper indicating major differences between Asperger syndrome and Autism disorder, arguing once again that the diferentiation of these subcategories helps specific intervention. In fact, these differences go above and beyond the initial IQ marker as a “cutoff”. They extend to neurological, cognitive and behavioral distinctions. For instance, a difference in the level of N-Acetyl aspartate/choline (NAA/Cho) affects the dopaminergic system in Asperger syndrome, leading to more OCD and a significant modulation in serotonin. The latter affects Asperger patients in comorbidities such as depression and anxiety, whereas it can also be seen to be responsible for a difference in male and female expressions of Asperger syndrome (facial emotional recognition, social interaction, eye gaze and speech processing). Early research in 2010 by Jou et al. revealed a clear difference in cortical folding in children with either an Asperger syndrome or an Autism disorder in Broca’s area, impacting, in part, the speech/language delay in children with Autism disorder. At the same time, using VBM (Voxel Based Morphometry), McAlonan et al. (2010)3 found important neuroanatomical differences in both subgroups. Duffy (2019)4 further argues the necessity for different clinical intervention based on his own study in which he discovered a difference in information treatment based on EEG activity between Asperger syndrome, Autism disorder and control patients. De Giambattista et al. (2019)5 suggest that recent studies in grey matter distribution between the two diagnostic subcategories support the evidence of a differentiation and the necessity to separate individuals so as not to obscure the characteristics of either diagnostic subtype. In fact, differences in language development, academic achievement, comorbidities and cognitive profiles indicate clearly that both subgroups would largely benefit from a distinction. For instance, age- related paths of treatment could better target impairments according to the “subtype” whether it be speech therapy and psychomotricity for Autism disorder or social training and psychotherapy for Asperger syndrome. De Giambattista further goes on to 2 Faridi, F., & Khosrowabadi, R. (2017). Behavioral, Cognitive and Neural Markers of Asperger Syndrome. In Basic and Clinical Neuroscience, 8(5) 349-360. 3 McAlonan, G., Cheung, C., Cheung, V., Wong, N., Suckling, J., & Chua, S. (2009). Differential effects on white- matter systems in high-functioning autism and Asperger’s syndrome. Psychological Medicine, 39(11), 1885-93. doi: 10.1017/s0033291709005728 4 Duffy, F., Als, H., Autism, spectrum or clusters? An EEG coherence study (2019). BMC Neurology 19 (27) doi:10.1186/s12883-019-1254-1 5 De Giambattista, C., Ventura, P., Trerotoli, P. et al. J Autism Dev Disord (2019) 49: 138. https://doi.org/10.1007/s10803-018-3689-4
  • 8. 8 Be the key reference for parents of Asperger children suggest that the use of the MASQ (Michigan Autism Spectrum Quotient) seems to be the better tool at the moment to discriminate between both subcategories, as mental imagery is not readily available for each patient. In short, all these elements prove the distinction between High Level Autism and Asperger’s and hence the necessity to separate the two diagnostic subcategories so that there may be a more specific and adapted therapy. Asperger persons require precise psychological and social intervention allowing for a decrease in risk factors in consideration of social integration whereas Autistic Disorder (AD) patients require pinpointed clinical interventions and support tools including, among others, psychomotricity, language development and cognitive tools.
  • 9. 9 Be the key reference for parents of Asperger children Chapter 2 Clinical Basis of the “Asperger’s syndrome” Condition Novelty or confusion? The DSM-5 was published in 2013 and was quickly adopted by numerous clinicians. In the mini world of autism, the impact has been significant6. Indeed, the DSM-5 reconfigures the definition of autism, bringing together basic autism (classic autism disorder) and autism spectrum; a single name is retained and promoted. Autism Spectrum Disorder (ASD) holds itself as the new construct for autism in all its forms. In particular, it dissolves Asperger's syndrome with high-functioning autism. This paraphrase/umbrella designation, ASD, aims to cover the essence of autism and to designate it by a singular noun, ASD, indicating the homogeneity of the concept. The benefits of such a merger were well greeted; indeed, autism would be "one", it would be the same everywhere, its opaque and insidious force being known. As such, only the quantities would vary and consequently, the degree of penetration and impact in each case. A bogus integration But beyond appearances, the construct of this unified condition is not very integrative. The DSM-5 presents the new definition of autism with some 39 words, a heavy and cumbersome description. “ASD is defined as persistent deficits in social communication and social interaction across multiple contexts AND restricted, repetitive patterns of behavior, interests, or activities, with or without accompanying intellectual impairment, with or without accompanying language impairment, and requiring support”. Furthermore, it is now necessary to distinguish levels, or degrees, of severity within the rearranged condition: these are Degrees 1, 2 or 3. Degree "3" appears to be reserved for what was previously referred to as the classic autism disorder (the Kanner profile with intellectual disability, under code F84.0 in DSM-IV-TR); Degrees "1" and "2” refer to the previously named profiles: PDD-NOS (Asperger's syndrome, coded F84.5 and atypical autism, coded F84.9). In addition, for Degrees 1 or 2, classic autism without disability could possibly be included. By expanding in this way, the definition of autism is becoming more hermetical. Back to reality for the clinician From the clinician's point of view, the integration of all forms of autism is rather inconvenient and artificial: thus, its main tool, the ADOS (and its counterpart the ADI- R), clash and express something other than this integrated concept. In fact, they 6 See Addendum #1: Autism Spectrum Disorder - DSM-5 Diagnostic Criteria.
  • 10. 10 Be the key reference for parents of Asperger children introduce, or re-introduce, the usual docimology of autism in three parts or levels: autism, non-autism and autism spectrum. In ADOS, the autism spectrum does not relate to autism. These three possible levels are related to a 10-point severity scale: this scale is not that of the DSM-5. The crack in the syllogism behind the ASD construct The syllogism underlying the DSM-5 ASD notion that autism is everywhere homogeneous - the only source of variation being quantity – is false. Basically, the ASD concept is dislocated because, in the real world, a notional "crack" splits it in two. Indeed, the Kanner condition with ID (Intellectual Disability), that is, basic and whole autism, is not spectral; it is monolithic. In this extreme condition, two sources of disturbance combine (not cumulate) forming a unique entity. These sources are autism, on the one hand, fully loaded, integral, wall-to-wall; and, on the other hand, intellectual disability with its varying degrees. It is also the interaction of these two sources or conditions that matters. The way in which one catalyses the other and vice versa, which shatters it into hundreds of pieces. An explosion of amalgams of mental retardation and autism which result in idiosyncratic composites with aggravated characteristics, making these two conditions unassimilable to the light forms of spectral autism, that is to say of partial, residual and moderate autism, notably that of Asperger's syndrome (AS). Repercussion #1 of DSM-5: AS is ignored For the philosopher of science, an epistemological ambiguity characterizes the ASD: he recognises a hybrid theory of autism. This theory brings together in the same construct "basic autism" and "spectral autism". The ambiguity concerns the heterogeneity of the construct. Lost in this collection of multiple and diverse autistic conditions, Asperger's syndrome, a condition on the boundary of the spectrum, slips into oblivion. In recent years, we see that AS is in the blind spot of medicine, especially female AS7. Child AS, on the other hand, is also the victim of an ideological banishment: resulting differential diagnoses will proliferate due to the non-recognition of the autistic base of the condition under review. 7 American Asperger women struggle for their acceptance. See: TheAWAKEProject.org, “Founded by Dana Waters, PsyD, ABPP, Professor, Antioch University, Seattle, this group fights for the survival of the category. “I began my “official” quest to be an autistic advocate and influencer by starting the AWAKE Project in March 2019. I was diagnosed on the autism spectrum in May … of 2018 (I was 53 at the time). I had been a psychologist for nearly 20 years and I had no idea. Being diagnosed was a liberation for me and also terrifying. Is it OK for a psychologist to be on the autism spectrum?”
  • 11. 11 Be the key reference for parents of Asperger children Repercussion #2: proliferation of differential diagnoses in the absence of a base condition DSM-5’s current nomenclature, clustered and undifferentiated, leads to a proliferation of differential diagnoses related to comorbidities, without any prior or subsequent link to a fundamental and initial condition: high-level autism, ASD. Faced with the atypical symptomatology of ASD, professionals will search for and map personality disorders (psychiatry has this reflex) or comorbidities (psychology and neuropsychology have this reflex). Thus, the diagnostic prism could reveal, even in the young child, a generalized anxiety disorder, an oppositional disorder, a depressive disorder or even an ADHD, a language disorder, an executive disfunction, a learning disorder, or all of these at the same time and perhaps including others among twenty common comorbidities. We could detect, in adults, a borderline personality disorder, OCD, BPD, GAD, an adjustment disorder or some other known condition on which we could potentially explain the difficulties experienced. Thus, the same problem arises with the proliferation of diagnoses, a consequence of the epistemological ambiguity and opacity of the DSM-5 formulations related to the ASD condition. Can an 8-year-old have as many aggravated conditions as found in personality disorders? Highly unlikely unless there is a history of chronic hardship, which is rarely the case. Can the child accumulate so many auxiliary (comorbid) deficiencies without a basic explanation, the acknowledgement of a single condition, lodged at the base, underlying these peripheral difficulties in an integrative vision of all the problems? Differential diagnoses (e.g., ADD, anxiety disorder, mood disorder, emotional lability, OCD, etc.) are placed in a better relative position and better explained, as a group, by Asperger-type ASD than by any single personality diagnosis. Indeed, the symptoms and their relative multiplicity, disparity, and severity – in short, the clinical spectrum - find in the ASD-Asperger hypothesis a superior integrative value than the shattering and cumulation brought on by a succession of differential diagnoses. Repercussion #3: double-blind evaluation, clinical myopia, diagnostic presbyopia The atypical child, who carries Asperger-type spectral autism, will inexorably be at risk of being evaluated in a double-blind manner, this, in the following sense: 1) the child will be evaluated without the right set of binoculars – the right telescope (to focus on the warning signs in a grouped manner) in order to grasp its unique configuration; and 2) nor with the help of the right microscope (to detect and focus on its unique nature) by both professionals and parents. It will be a great challenge to detect the overall pattern of the warning signs, the topography of the terrain which is so specific to the ASD Asperger (the effect of the autistic hurricane having been weakened, losing speed, strength) beyond the topographical features that are the observed comorbidities. The terrain is notoriously rugged because of the multiple,
  • 12. 12 Be the key reference for parents of Asperger children intense and disparate alterations. We find incongruous, astonishing atypia, strange paradoxes; significant weaknesses rubbing elbows with exceptional skills. Not to mention intense fascinations, combined with pure, radiant and superior skills. Asperger's syndrome, when properly detected, explains the overall symptoms of the person concerned, better than any alternative. It is the principle of parsimony as applied to the diagnostic approach. The principle of Ockham's razor8, notoriously ignored in psychology and psychiatry, is the principle of simplicity, parsimony, rationality and states that multiples should not be used without necessity; the simplest hypotheses should be preferred. Every support plan must obey a basic stipulation: the child is on the Spectrum. The science of spectral autism is clean, unique, specific. As such, high-functioning autism is the source of the difficulties identified by observation results. The intervention plan, therapy plan, etc. must be driven by the autistic nature of the child's disorders; thus, the choice of procedures and techniques, for example for early childhood, stems from the applied analysis of behavior in the form of intensive behavioral intervention9. The therapy outlook for each nosological group is thus restored. It is known that treating low-functioning and high-functioning autism involves, for each condition, a differential regime of sustained and continuous intervention. During the early childhood years, such a regime will be extended to the maximum depending on the degree of impairment, with a decrease of this intensity, especially for high-functioning autism, and a fortiori for Asperger syndrome, as the age increases up to the adolescent or young adult period. From that point on, the interventions are on the basis of when required and are therapeutic in nature, more focused on the acquisition of social norms and the control of anxiety. The Asperger condition – what is unique and exclusive about it The term "Asperger’s syndrome" was coined by Dr. Lorna Wing, an English psychiatrist, in 1981, following her translation and publication of Hans Asperger's work. The condition was recognized in 1993 in the ICD-10 and in 1994 in the DSM-IV. It was removed from this latter nomenclature in 2013 for reasons of ambiguity in the criteria of the condition10. But the claim that it is difficult to distinguish Asperger's syndrome from high- functioning autism comes out as inaccurate to the clinician’s trained eye. There is a strong differentiating factor between the patterns of spectral autism on the one hand, 8 Called Ockham’s Razor Principle: Principle of simplicity, parsimony, rationality: multiples should not be used without necessity, the simplest hypotheses should be privileged. 9 Tarbox, J., Dixon, D.R., Sturmey, P., & Matson, J.L. (Ed.) (2016). Handbook of Early Intervention for Autism Spectrum Disorders. Springer. 10 Shilpi Sharma, Lisa Marks Woolfson, Simon C. Hunter (2011). Confusion and inconsistency in diagnosis of Asperger syndrome: a review of studies from 1981 to 2010. https://journals.sagepub.com/doi/abs/10.1177/1362361311411935?rfr_dat=cr_pub%3Dpubmed&url_v er=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&journalCode=auta
  • 13. 13 Be the key reference for parents of Asperger children such as Kanner's autism without ID and PDD-NOS and, on the other hand, Asperger's syndrome, at least in adults: this factor is the degree of anosognosia. Typically, there is a lesser degree of anosognosia in adult Asperger’s syndrome and it is progressive, dissipating as the quest for identity evolves. Anosognosia is “an inability or refusal to recognize a defect or disorder that is clinically evident” (Merriam-Webster Dictionary). It is therefore the opposite of insight, a keen understanding of a condition. Asperger's syndrome is strongly felt, in early adolescence and sometimes from childhood, as a "strange and undefinable malaise". The impact on self-awareness and relationships with others is direct. Frequently, this malaise will dissipate suddenly when the person comes across the Asperger hypothesis, often in the form of a testimony, an article, or a video document. Insight emerges as a true "copy and paste": "He, or she, is me! I truly recognize myself, a lot, totally ". And it's a shock. The veil is lifted, the quest for identity begins. All that remains is the official confirmation of the condition that the diagnosis will endorse, the diagnosis which will be supported by the observations collected throughout the school journey. The concept of anosognosia is known in reference to schizophrenia; but it applies analogously and judiciously to high-functioning autism. The scales of observation and measurement of this phenomenon are rare and concern mainly mental illness. But in reference to Asperger's syndrome, it is paired with that of insight which refers to a sudden discovery, access to the solution of a problem. The problem here, felt by the individual, is "why I am different from others?", "why I am ineffective with others?", or "why can I do without others?", that is, the atrophy of need-of-others, in short: the shrinking of relational propensity, of social drive. The Asperger and the neuro-typical are revealed as two parallel worlds, two riverbanks face-to-face. The Asperger is aware of it. The term insight is used to determine the level of "awareness of the disorder," that is, whether the person recognizes "suffering," carrying a condition, a disability, or an illness. Insight is therefore the discovery of a solution that becomes apparent only by a reorganization of the elements of the problem. The term can be used to mean that a person "now sees the whole thing," or has new information or an experience that illuminates the overall condition. Evolutionary partial anosognosia is the pathognomonic marker of atypical spectral autism of the Asperger type in adults11. 11 Rightly, authors such as Ghaziuddin have shown that there are other signs that effectively distinguish Asperger syndrome from high-functioning autism, such as the specifically impaired quality of their social relationships, their idiosyncratic way of communicating, and interests of rare intensity. See M. Ghaziuddin, “Defining the behavioral phenotype of Asperger syndrome,” Journal of Autism and Developmental Disorders, vol. 38, no. 1, pp. 138-142, 2008. and M. Ghaziuddin and K. Welch (2013). The Michigan Autism Spectrum Questionnaire: A Rating Scale for High-Functioning Autism Spectrum Disorders. https://www.hindawi.com/journals/aurt/2013/708273/. This questionnaire is particularly interesting. Thus, « The purpose was to construct a scale that would be brief and easy to administer and incorporate questions targeting behaviors suggestive of Asperger syndrome. The aim was to focus on two main areas: quality of social interactions and form/content of communication. For example, questions 2 to 5 were intended to capture the pedantic style of communication said to be typical of this condition. Question 8 attempted to describe the “active but odd” style of social interaction said to be
  • 14. 14 Be the key reference for parents of Asperger children Measure anosognosia, as a priority, to distinguish AS Measuring anosognosia remains a challenge but should nevertheless be a diagnostic priority. The lack of valid tools to capture this dimension has contributed to confusion between the various spectral autism profiles, including AS, and has hindered AS’s diagnostic differentiation. To dispel anosognosia, for the Asperger person, is to know an epiphany, a kind of slow or sudden understanding of the meaning of something, in this case, the autism inherent to his or her personality and how he or she perceives and feels its difference. Insight awakens early in Aspergers, on its own, while occurring later in other autistic people in the high functioning zone of the spectrum (Kanner with no ID and PDD-NOS), through external communication or conditioning (the person learns from external sources that he or she is autistic). Asperger's syndrome, an elusive difference for sure, but so real Asperger's syndrome is likened to an invisible "difference". Since it is declared an invisible difference, can we conclude that the resemblance with normality is manifest, salient, predominant? Yes. The Asperger person, an altered neuro-typical person, or, as mentioned with a bit of humour, a “failed autist” (“an unfinished autism condition", says Attwood12). In the first position or case of the spectrum proper, that of Kanner without ID, anosognosia is at its peak. The person does not realize that he or she is autistic, as long as and unless he or she is taught. This person does not initially see or discover the insidious, daily impacts and contingencies of his or her condition. In the PDD-NOS case, the incidence of anosognosia is partial, moderate, but better than in the previous case. In the last case, the "Asperger" case, the anosognosic haze inevitably dissipates during adolescence in girls and at the end of this period in boys. At 13-14- 15 years for girls and at 17-18 years for boys, the quest for identity awakens. The teenager discovers herself or himself to be someone else, different. A systematic acceptance of this difference by the teenager is therefore necessary and to be encouraged in psychotherapy or in parental coaching. This acceptance will occur if the person has the necessary embryo of insight (the awareness of her or his condition). Initially, at an early age, during childhood, the anosognosia remains pronounced, if not total. The anosognosic haze remains the #1 barrier to the freedom from Asperger’s in the child which explains the resistance to psychotherapy. The Asperger teen discovers that he or she is different and embarks on an identity quest that will eventually lead to the recognition and acceptance of his or her condition. The Asperger person is of neuro-typical prevalence, but also his or her normality is altered by residual autism. common in Asperger syndrome as opposed to the “aloof and passive” manner typical of high- functioning. Question 9 reflected the clinical impression that persons with AS tend to speak fluently by three years of age and sometimes even earlier, while question 10 referred to the fact that in many cases, features of AS become more apparent as the child grows older, usually by 7-8 years of age. » 12 Attwood, T. (circa 2017. Unpublished document). The New DSM-5 Diagnostic Criteria for Autism Spectrum Disorder.
  • 15. 15 Be the key reference for parents of Asperger children Conversely, the ASD person (of the high-functioning autism type, either of Kanner profile without ID or PDD-NOS), is of autistic prevalence, but in partial and slow spectral emergence. Located at the end of the autistic spectrum, in a border area, the AS has its own identity, its distinct configuration. And which requires specific answers. And which also requires a separate and specific category in the DSM. Tony Attwood says13: « Developmentally speaking, Asperger’s syndrome is an unfinished autism condition. It results of an autistic imprint in the structure of personality that has not fully developed to its entire span and size. It is a mixed outcome combining normal acquisitions with some pathological autistic ones. It’s a mitigated condition. While other profiles on the spectrum share a full set of common characteristics, only varying in degrees of severity. Aspergers lack significantly some of those core traits. (…) For the sake of comparison, put side by side a 3-year old Asperger child with a 3-year-old autistic Kanner- type child, and you have two entirely different realities. For these reasons, Asperger syndrome has to be kept a separate entity within the autism spectrum disorders”. In the case of Asperger's syndrome, the person is basically neuro-typical, but his or her "normality" is altered by spectral autism. During childhood, this condition of “normality” may be only partially emergent, as it is masked by comorbidities, often virulent (e.g., tantrums, sleep disorders, eating disorders). A capricious force of movement...a rugged and incongruous terrain. A condition which is quite disconcerting in childhood… When looking at the Asperger condition in adults, there is no standard prototype. Autism does not affect the Asperger condition in the same way that it imposes its merciless imprint in the case of Kanner and PDD-NOS conditions, by subjugating them (Autism penetrates them, it subdues them). In the case of Asperger, autism colors, disturbs, resulting in profiles each multiplied by a kind of kaleidoscope effect, which produces infinite combinations of positive and negative atypia, fragmented, infinitely configured, in as many forms as there are people, making it impossible to map the condition except in general terms. Spectral migration on one side of the spectrum; the impermeability of the neurotypical border, of the other Another phenomenon ignored by current diagnostic practices is spectral migration. Under the combined effect of developmental maturation, systematic stimulation, learning and, in general, acculturation, development occurs, progresses and reclaims its growth. Spectral autism (unlike classic autism disorder) of the Kanner type without ID or PPD-NOS, slowly settles down over the years, recedes, weakens with the passage of time. The first profile migrates to the second; the second to the Asperger plateau. This emergence is characterized by a progressive unblocking of intelligence. Indeed, intelligence escaping the constraints of autism becomes the lever of development, in the semi-free zone of the Asperger pre-plateau. 13 Idem.
  • 16. 16 Be the key reference for parents of Asperger children The slow odyssey of the person with mild spectral autism ends on this plateau, overlooking the autistic spectrum, upstream of the neurotypical state. A rebalancing of the interface with the environment will be acquired, a kind of closure that puts an end to the torments of an identity quest often pursued for years. A quest broadly similar from one person to another, except for a few variations. And marked by developing, over the years, a convenient avatar within the neurotypical community…since one must adapt. But the border with normality is not porous, the complete elimination of autism is not possible. The Asperger profile is the terminal stage of the autistic spectrum, an atypical autism. Early detection The unborn Asperger child can receive no better gift than early detection and diagnosis. Of course, the child is not perceived as autistic at first, but rather, strange. Thus, through the diagnosis, its "difference" is soon identified and understood; the alternative causes are discarded. The support plan may be developed according to the direction dictated by the Asperger condition. We know that help provided during early childhood can make a huge difference in later life. And this help must be constant and diligent throughout the growing years. The education of an Asperger child will not be improvised: the specificity of the condition demands a specificity of the response. There is consensus on the following point: the Asperger child, because of its intelligence, because of the mild autism it carries, must receive a form of stimulation and supervision adapted to it. It is therefore obvious that a precise identification of the condition will result in a specific intervention plan and this, for the well-being of the child, its parents and of society. We have compiled a bibliography of over 250 titles of books dealing directly or indirectly with this issue; it is available on request14. Insight: its genesis The acquisition of insight in an Asperger child is a long process. Very early on, around the age of 7-8, the child must be made aware its condition and start to be exposed to the slow discovery of itself. It will take years to complete this process. What we are looking at here is developmental anosognosia: this situation will diminish and regress through education, acculturation, experiences lived and gained, formal support, parental or other. In particular, the acquisition of the "theory of mind" will catalyze this development. We know that girls awaken earlier and progress faster than boys. It is difficult to think that the Asperger child would thus be made to assume a condition that would not be officially recognized. Or believe that the Asperger child could be satisfied with a wording of its condition that would be ambiguous, imprecise, 14 APEA, Bibliography on the Asperger child, 2017 (in French). Updated in 2019.
  • 17. 17 Be the key reference for parents of Asperger children of the type "autistic syndrome spectrum" (ASD), as it appears in DSM-5, or "neuro- atypical" as it is advocated by a certain egalitarian ideology. The Asperger condition in children is described and detailed in many texts. For instance, in this little booklet written by an Asperger, available on the WEB, the "specific" language, motor skills, character traits and social functions of the Asperger child are discussed15. Clearly, early stimulation is required to this specific condition and is quite different from that required by classic and basic autism. Syndrome or Profile? We question the use of the construct "syndrome" to identify the Asperger condition. Indeed, the notion of a syndrome refers to "a group of symptoms that collectively characterize a disorder, or other condition considered abnormal" (The Free Dictionary16). Merriam-Webster adds: "a set of concurrent things that usually form an identifiable pattern"17. Asperger's is not an abnormality, it's a difference. In fact, the Asperger person is predominantly neurotypical, but is impaired by a limited amount of autism. Moreover, neither the notion of a collection of symptoms nor the idea of an identifiable pattern fit the Asperger reality. For a simple reason: the multiplicity of symptoms, the plurality of forms that the Asperger condition assumes are such that the DSM-IV could not, at the time, articulate a set of criteria that would have made the condition clear and explicit and, as such, graspable by clinical instrumentation, which is of course the case of autism in all its forms and degrees of severity. In this context, we believe that the proposal put forth by the Asperger/Autism Network (AANE) to designate the condition as a profile is pertinent. See the AANE Glossary (https://www.aane.org/glossary/). Asperger Profile: A name that AANE is choosing to use to describe the constellation of characteristics that was formerly known as Asperger Syndrome (AS). AS no longer exists as a formal diagnosis defined by the medical and psychiatric community, which subsumed the diagnosis under the larger “Autism Spectrum Disorder” umbrella in the 5th edition of the Diagnostic and Statistical Manual (DSM-5). AANE has chosen the term Asperger profile to identify the challenges and recognize the gifts of those who previously could have fallen under the AS label. Many people with an Asperger profile can leverage their cognitive abilities and other talents to compensate for the challenges that they face. As an Asperger profile can profoundly impact people throughout their lives, many still can benefit from a variety of Asperger supports. Because of their atypical combination of significant strengths and challenges, people with an Asperger profile are often misunderstood, and their challenges either go unrecognized, or they are misdiagnosed. 15 Bernard, M. (2012). Symptomatology of Asperger syndrome in the child (in French). http://sebastienvaumoron.com/data/documents/Symptomatique-du-syndrome-dAsperger-chez- lenfant.pdf 16 The Free Dictionary by Farlex. https://www.thefreedictionary.com/syndrome . 17 Merriam-Webster Dictionary. https://www.merriam-webster.com/dictionary/syndrome .
  • 18. 18 Be the key reference for parents of Asperger children Alarming over-diagnoses? It is alleged that clinicians in various parts of the world over-diagnose autism. Nothing could be more false. For example, the study by Rodgaard et al.18 has led to alarmist screams about the over-diagnosis of autism. This cluster of meta-analyses claims to have shown that autism is diagnosed based on less and less marked signs and that autistic persons are less and less different from the general population. Rather than cry wolf, we must hear the complaint, the suffering of adults looking for a ray of light to shed on the possibility of them carrying a mild or moderate form of autism. We must also feel the pain of parents who are powerless in the face of their child's developmental disabilities, the failure of their growth. The experience of those who visit autism evaluation centers confirms one thing: the diagnoses made are, in the majority of cases, rigorous, based on solid evidence and valid. The essence of the mystery revealed by the above study is clear: autism is growing, and its forms are not only mixed, but almost infinitely diverse. Thus, there is a disconnect between the Rodgaard et al. study and the public use that was made of it. The comments heard on the alleged diagnostic abuses border on caricature. It is patently wrong to claim that the diagnoses increasingly cover borderline cases. Why? Simply because it is autism that is more prevalent and more diverse than ever before. In a statement, the Quebec Federation of Autism refutes the allegations made19. In addition, diagnostic practices are strictly regulated by ethical standards and to suggest that there is laxity is baseless. The following is a public statement made by CASDA (Canadian Autism Spectrum Disorder Alliance) as communicated by Nathalie Garcin PhD of the Spectrum Group20: Autism Spectrum Disorder ("ASD") is indeed a « spectrum » of neurodevelopmental conditions that vary in terms of presentation, such as - social/communication deficits and restricted or repetitive behaviors. The vast variability and many “autisms” make it difficult to understand the neurobiological, genetic and cognitive mechanisms of ASD differences. To report, as the CBC & National Post did in their recent articles, that the criteria for diagnosis have become "trivial" is misleading and couldn't be further from the truth. Indeed, this view was apparently held by one researcher who made such a statement more as hyperbole than as a clinical statement based on evidence. Symptom presentation varies from one person to the next, however, in order to be properly diagnosed, professionals must ultimately consider whether the individual’s symptomatology significantly impacts their functioning. This is the same for other conditions such 18 The article “Temporal changes in effect sizes of studies comparing individuals with and without autism: a meta-analysis”, Rodgaard E.-M. et al., was published on August 21, 2019 in JAMA Psychiatry. https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2747847?guestAccessKey=1722f239- 1dda-42d5-bcc9- dbe33edd3fe0&utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_ content=tfl&utm_term=082119 19 Fédération québécoise de l’autisme. Communiqué du 22 août 2019: des autistes qui n’en sont pas: attention aux débordements. Communication@autisme.qc.ca 20 Garcin, N. (2019). Personal communication.
  • 19. 19 Be the key reference for parents of Asperger children as, for example, depression. However, we would never deny a person with a milder form of depression the support they need to achieve well-being. Such a diagnosis- when properly performed- is the result of the application of standardized testing with evidence-based assessment tools including direct observation assessment and targeted developmental history that takes over ten hours of individual assessment by an interdisciplinary team including physicians, psychologists, behavior analysts, speech and language pathologists and other professionals. To suggest, as the researcher apparently did in interviews post-publication, that people are diagnosed with ASD because they simply avert eye gaze or are bothered by tags on their clothing is irresponsible, and if true would be a violation of ethical and diagnostic practice guidelines endorsed by professional colleges. Moreover, it undermines the lived experience of Autistic Canadians and their families and has deterred from the issue: one of support needs for individuals with neurodevelopmental issues on Canada.
  • 20. 20 Be the key reference for parents of Asperger children Chapter 3 The Sociological Bases of Asperger’s syndrome Despite their difficulty in establishing social relationships, Aspergers are known to be able to come together, online21 or in person, because they share one thing in common: their diagnosis22. They recognize each other and they fraternize. However, due to the disappearance of the "Asperger’s syndrome" diagnosis in DSM-5, this prospect has been compromised. Sahnoun and Rosier (2012)23 conducted a survey of individuals and groups who expressed reluctance about the disappearance of Asperger's syndrome in DSM-5. Many are worried about what will happen to the 'aspergoid' subculture formed over the years; we wonder how Aspergers will compensate for the disappearance of their diagnostic place in the agora of mental conditions, the very one with which they identify. In studies conducted by Spillers (2014)24, Kite (2012)25 and Vivanti (2013)26, several arguments regarding the cultural and identity aspects of Asperger’s syndrome overlap. In particular, it is often mentioned that there is a difference between autism and Asperger’s syndrome in the way they are perceived in society in general: autism is viewed as a much more severe condition requiring more services and interventions than Asperger’s syndrome. Autism is often associated with intellectual disability, while an Asperger is instead perceived as intellectually bright. Some respondents in the Spillers (2014) and Kite (2012) studies "were concerned about identity, services, and how they might maintain their identity and services, regardless of changes in DSM–5”. Due to this difference in perception between the two diagnoses, a distinct Aspie culture has developed over the years. It is important to note that the term "Aspie" adopted by the community itself clearly demonstrates an identity attachment: 21 A list of blogs, in Addendum 2, provides a picture of this activity (English and French). 22 Asperger Syndrome and Social Relationships, Adults Speak Out about Asperger Syndrome, Genevieve Edmonds, 2008 23 Lilia Sahnoun & Antoine Rosier, “Asperger Syndrome: the stakes of a disappearance” (in French) PSN. Psychiatre, Sciences humaines, Neurosciences [en ligne]. Nouvelle série, vol. 10, n° 1, octobre 2012, Paris, Éditions Matériologiques, p. 25-33. Mis en ligne en octobre 2012. URL: www.materiologiques.com 24 Jessica L. H. Spillers, Leonard M. Sensui & Kristen F. Linton (2014) Concerns About Identity and Services Among People with Autism and Asperger's Regarding DSM–5 Changes, Journal of Social Work in Disability & Rehabilitation, 13:3, 247-260, DOI: 10.1080/1536710X.2014.912186 25 M. Kite, Donna & Gullifer, Judith & Tyson, Graham. (2013). Views on the Diagnostic Labels of Autism and Asperger’s Disorder and the Proposed Changes in the DSM. Journal of Autism and Developmental Disorders. 43. 10.1007/s10803-012-1718-2. 26 Vivanti, G., Hudry, K., Trembath, D., Barbaro, J., Richdale, A., & Dissanayake, C. (2013). Towards the DSM–5 criteria for autism: Clinical, cultural, and research implications. Australian Psychologist, 48, 258–261. doi:10.1111=ap.12008
  • 21. 21 Be the key reference for parents of Asperger children Many people currently diagnosed with the latter condition do not see themselves as having autism, but rather identify themselves as a specific cultural minority (i.e., the “Aspie” culture; see websites such as aspieweb.net, wrongplanet.net, or aspieworld.net).27 Membership in this sub-culture is an important identity factor. This sub-culture disassociates itself from basic low-functioning autism. Spillers writes that Aspergers seek to assert their difference in a positive way and do so by using this term. Few studies address the issue of Asperger's identity and culture. We believe, however, that such a culture still thrives, 6 years onward, despite the disappearance of Asperger's syndrome in DSM-5. Several books on Asperger's syndrome were published after the release of the DSM-5 in 2013. In a list on childhood Asperger’s syndrome compiled by the Autism & Asperger Clinic in Montreal, 83 of the 233 books listed were published in or after 2013. Furthermore, the word Asperger still persists in popular culture such as in some recent television shows like Good Doctor or Atypical which still use this syndrome and where characters who are Aspergers are portrayed. The term "Asperger’s syndrome" is still ubiquitous in Western society despite its disappearance from the DSM-5 and some people still congregate around the "Aspie" culture. We counted a total of 95 Facebook groups in English and French that had the word "Asperger" in their titles and a total of 93 groups in English and French that had the word "Aspie". Preliminary findings from an ongoing study in sociology at the University of Montreal also point in this direction (Laflamme, 2019)28: Finally, it seems that Asperger's syndrome is still an important identity reference for some people with autism. Indeed, a majority of the twenty autistic women I met in Quebec and France, almost all diagnosed after 2013, use the term "Asperger" to define their own condition. Many use this term interchangeably with autism or merge them both and use the term " Asperger Autism". Finally, some participants mention that it was specifically the discovery of Asperger's syndrome that enabled them to identify with ASD, as they had not been able to recognize themselves in what they had previously known of "classic" autism or with the results of their preliminary research on it. 27 Vivanti (2013), p.260. 28 Maude Laflamme, doctoral student in Sociology, 2019. Personal communication.
  • 22. 22 Be the key reference for parents of Asperger children Chapter 4 Conclusion and Recommendations The current DSM-5 classification for autism causes harm to mildly affected people, such as those with Asperger's syndrome. In a GME (Global Medical Education)29 video, Dr. Michael First, professor of Clinical Psychiatry at Columbia University, talks about the withdrawal of Asperger's syndrome from the DSM as a real loss for the “Aspie” community, as it is considered one of the rare de-stigmatized conditions of the DSM ("a good label rather that a stigmatizing label"). In addition, he points out that the increase in the level of diagnostic criteria of social communication (from 2 out of 4 required by the DSM-IV to 3 out of 3 in the DSM-5) will result in the loss of services for some 9% of children and adults diagnosed with the condition, because they have become "false positive cases". His concern is also directed at the strange note regarding the new wording of DSM-5 which states that people who had previously been diagnosed with Asperger's (or PDD-NOS) should automatically be recognized as an ASD - a unsavory bandage to limit the hemorrhage caused by the transformation from IV to 5 – and which undermines the credibility of the new ASD concept and the DSM itself as a diagnostic tool. Attwood (unpublished document, circa 2017) opines: Removal of the term Asperger’s syndrome has negatively affected the self-identity of adults who have benefited from the term, created self-support groups and accessed literature and Internet support groups based on common characteristics and experiences. Clinical experience has indicated that the majority of adults with Asperger’s syndrome and their families want to maintain the term. The term Asperger’s syndrome generates a mostly neutral understanding and attitude in the general community and media. Those achieving a diagnosis are less likely to reject that diagnosis due to negative preconceptions or a perception of having a severe or debilitating mental disorder. When an adult who has previously had a diagnosis of Asperger’s syndrome now describes him- or herself as having autism, they may not be believed, as the general population considers the term autism to be associated with severe disability. Parents of school-age children could be reluctant to contemplate a diagnostic assessment for autism, as this term is currently associated with children with very high support needs and a very limited prognosis. Adults may be reluctant to cooperate with a suggestion of, or referral for, a diagnostic assessment for autism when they do not consider they have the characteristics and abilities associated with the popular understanding of the term. An unexpected phenomenon has emerged since the adoption of the DSM-5 and its ASD construct. Some Aspergers call themselves downright autistic, while others, less radical, call themselves "autistic Aspergers”. In order to better claim their rights, 29 DSM-5 Autism Spectrum Disorder. https://www.gmeded.com/dsm-5/dsm-5-autism-spectrum- disorder
  • 23. 23 Be the key reference for parents of Asperger children which are sometimes threatened, rights that are certainly legitimate, and to have a stronger impact on authorities and individuals, the expression "me/us, autistic Aspergers" is shortened and becomes "me/us, autistics". It therefore entails that Aspergers display themselves as autistic during individual litigation or conflicts, and imperatively insist on using this status and this unambiguous wording, which is a far cry from the perceived reality of their condition. This situation will generally be met with skepticism by employers and by the average person, the man on the street who has another idea of what autism is. One of the effects of this practice is that it obscures the condition of heavy autism, that is, those who are truly autistic, with or without a mental disability. It is them who cannot value themselves, defend themselves, promote their "difference". The situation is close to identity theft. It creates a misconception that harms the cause of autism, its just recognition for the purposes of, for example, access to employment. An author (circa 2017) pointed out the value of a clear, unambiguous and explicit terminology of autism in all its forms. Being diagnosed as having autism, Asperger syndrome, or pervasive developmental disorder (PDD) not otherwise specified has great practical, clinical, psychological, cultural, economic, and even political significance. From a practical and clinical standpoint, the diagnostic classification determines who gets and is likely to benefit from treatment. From a psychological standpoint, it provides parents and children some sense of closure and, because prognosis is related to diagnosis, can result in some reduction in anxiety. For other parents, the diagnosis opens the door to greater anxiety as they face a fragmented set of treatment, educational, and family support services with unclear eligibility, transitions, and handoffs. From a cultural standpoint, diagnosis relates to the formation of groups around biological identities based on shared or common biological conditions. From an economic standpoint, setting thresholds based on diagnostic criteria is how state- run health care systems and insurance companies ration care. From a political standpoint, it is how people organize themselves to exert political advocacy on behalf of those who share this burden.
  • 24. 24 Be the key reference for parents of Asperger children The concept of the autistic spectrum (ASD) originated in an article by Doris A. Allen, published in 198830. She outlined the spectral nature of a set of autistoid dysfunctions in pre-school children without, however, proposing an appropriate scale, an autism spectroscopy. The concept of ASD was subsequently extended to other age groups when the DSM-5 was published in 2013. However, this concept has not been validated in other populations, such as children aged 5 to 11, adolescents, young adults, and the other ages of life: middle-aged adults, women and men, older adults, separately. Nor was it validated in very slightly affected individuals - the borderline cases. The concept of autistic spectrum entered the DSM-5 without the necessary validations for the range of autistic conditions of all ages and both sexes. 30 Doris Allen is the author of: Autistic Spectrum Disorders: Clinical Presentation in Preschool Children, 3C April 1988, Child Neurol, 3 (Suppl), p. 48-56. Surprisingly, in her article developed to demonstrate the spectral character of childhood autism, Professor Allen introduces 5 subtypes of autism, in apparent breakdown with its notion of spectral continuity/homogeneity, the last of which corresponds to Asperger syndrome in children.
  • 25. 25 Be the key reference for parents of Asperger children Chapter 5 WE REQUEST The following proposal concerns the naming of Autism Disorders, the Asperger condition and its related criteria. We request modifications to the original DSM-5, as expressed in the following DSM-5 TR (Text Revised) proposal. These modifications to the DSM-5 are necessary in order to improve the lives of those affected by the condition of high-functioning autism spectrum disorders. This condition is now split into two groups. Henceforth, we must refer to Autism Spectrum Disorders in a plural form, not in a singular form. Henceforth, we must distinguish two forms of such Disorders, Typical and Atypical: typical high-functioning autistic disorders on the one hand, and the atypical Asperger high-functioning disorder on the other. Henceforth, an Asperger person will be an Aspie (Aspi in French) and their condition will no longer be a syndrome, but rather a profile. Henceforth, the Aspie/Aspi profile will be subject to a holistic-based31 identification and not a criteria-based identification. 31 The Free Dictionary by Farlex states (https://www.thefreedictionary.com/holistic): “holistic means: a. Emphasizing the importance of the whole and the interdependence of its parts. b. Concerned with wholes rather than analysis or separation into parts: holistic medicine; holistic ecology, holistic psychology.
  • 26. 26 Be the key reference for parents of Asperger children Chapter 6 Proposed text DSM-5 TR32 Autism Spectrum Disorders Autism Spectrum Disorders 299.01/299.02 Diagnostic Criteria Two groups of ASD individuals are identifiable: high-functioning autistics, and (previously called) Aspergers. First group (299.01) and Second group individuals (299.02) are differentiated on the basis of tests such as The Michigan Autism Spectrum Quotient Test (Ghaziuddin & Welch, 2013)33. First Group (children, adolescents, and adults): Typical Autism Spectrum Disorder. Criteria are (as in the Addendum 1): A. Persistent deficits in social communication and social interaction...etc. B. Restrictive, repetitive patterns of behavior, interests…etc. C. Symptoms must be present in the early developmental period…etc. D. Symptoms cause clinically significant impairment in social…etc. E. These disturbances are not better explained…etc. Specify the severity level (1, 2, or 3). Second group (children, adolescents, adults): Atypical Autism Spectrum Disorder (early and late), previously referred to as Asperger’s syndrome and now called Aspie/Aspi Profile. Criteria are: Criteria A, B, C, D, and E are an integral part of the assessment procedure which remains holistic, in within the use of psychometric instrumentation for a global, valid, and reliable capture of confirming signs of the condition, such as the Baron- Cohen Screening Tests series or diagnostic tests like the RAADS, and numerous others available on-line. 32 DSM-5-TR: Text Revised 33 M. Ghaziuddin, and K. Welch (2013). The Michigan Autism Spectrum Questionnaire: A Rating Scale for High-Functioning Autism Spectrum Disorders. https://www.hindawi.com/journals/aurt/2013/708273/
  • 27. 27 Be the key reference for parents of Asperger children Other aspects taken into considerations are: F. Against a background of normality, the child/adolescent/adult presents multiple, disparate and aggravated atypia and comorbidities such as ADHD, food selectivity, sleep disorders, eye contact disorder, anxiety disorders, mood disorders (including anger and tantrums), affect disorders (flat or exalted affect), etc.34The child/adolescent/adult also presents peaks of skills (exceptionally, a savant syndrome) such as drawing, painting, music, sculpture, hyperlexia, hyperliteracy, early language, encyclopedic memory, foreign accent, ability to acquire a second language, etc. G. Against a background of normality, the adult (male or female) can compose without help an explicit and elaborate written or verbal account of the difficulties experienced and of his or her subsequent quest for identity. An evocation of his or her atypical childhood is required. A psychometry of his or her insight of the condition confirms the ongoing decrease of autistic anosognosia. H. Against a background of normality, the adult woman may have androgynous features and appear eccentric. She is seen as cold and self-centered. She has little interest in makeup, hairdressing or shopping. She doesn't like to be touched. She may have an interest in science, computer sciences design, writing, languages, psychology. She has often been diagnosed with BPD (Borderline Personality Disorder). She only cultivates one or two friendships. She gives herself exhausting neuro-typical roles; she is good at disguising herself as a neuro-typical person; she comes out of hiding only when she gives birth to a child on the spectrum. Severity levels: 1 or 2 34 Other comorbidities have also been observed in children: impaired executive efficiency, loss of autonomy, oppositional disorders, ruminations, obsessive-compulsive disorders, hording disorders, bipolar disorders, gender dysphoria, tics, pica, mannerisms, stereotypies and repetitive behaviors including trichotillomania, phobias, misophonia, rigidities, self-stimulation, self-mutilation, oral communication disorders (absence or limitation of language, selective mutism) including echolalia, expressive and receptive language disorders, sensory defenses (hyperesthesia) and conversely hyposensiorality, relational and socialization disorders, fine and gross motor skills disorders, writing disorders (and other learning disabilities), reactive disorders of attachment, prosopagnosia disorders (face recognition), episodes of depersonalization, derealization, hallucinations, delusions, etc.
  • 28. 28 Be the key reference for parents of Asperger children Chapter 7 International Petition As an Asperger person, a parent, a supporter and friend of the cause, I support APEA's request to DSM-5 authorities for the reinstatement of "Asperger's syndrome" in the ASD nomenclature, under the term “Aspie Profile” Ctrl + Click here to sign the petition (this is a private or closed petition – only those who have been asked will be able to sign)
  • 29. 29 Be the key reference for parents of Asperger children Addendum 1 (actual text) Autism Spectrum Disorder DSM-5 Diagnostic Criteria A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive) 1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions. 2. Deficits in nonverbal communicative behaviors used for social interaction, ranging for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication. 3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers. Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2). B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two or the following, currently or by history (examples are illustrative, not exhaustive; see text): 1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases). 2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take some route or eat same food every day).
  • 30. 30 Be the key reference for parents of Asperger children 3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests). 4. Hyper- or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement). Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2). C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life). D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
  • 31. 31 TABLE 2 Severity levels for autism spectrum disorder Severity level Social communication Restricted, repetitive behaviors Level 3 “Requiring very substantial support” Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches. Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action Level 2 “Requiring substantial support” Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication. Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action. Level 1 “Requiring support” Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and- fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful. Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.
  • 32. 32 Addendum 2 Blogs Visited by Aspies Blogs in English Numerous English blogs (over 100): https://anautismobserver.wordpress.com/ Other blogs: - Asperger/Autism Network: https://www.aane.org/blog/ - Psychology today: https://www.psychologytoday.com/us/blog/aspergers- diary - Life with Aspergers: https://life-with-aspergers.blogspot.com/ - Confessions of an Asperger’s Mom: https://confessionsofanaspergersmom.blogspot.com/ - Thoughts of an Introverted Matriarch: https://inneraspie.blogspot.com/ - AStrangerInGodzone: https://strangeringodzone.blogspot.com/ - Aspergers 101: https://aspergers101.com/ - Her autism: https://herautism.com/blog/ - The Autism Dad: https://www.theautismdad.com/blog/ Blogs in French Fédération Québécoise de l’Autisme [FQA]: - http://www.autisme.qc.ca/tsa/je-suis-autiste/adolescent-ou- adulte/blogs.html - http://www.autisme.qc.ca/ressources/ressources-hors-quebec/sites- europeens.html Liste de blogues fournis par l’Association Francophone des Femmes Autistes [AFFA], en France: - https://femmesautistesfrancophones.com/2017/03/02/blogs-et-medias- traitant-de-troubles-du-spectre-autistique/ Site d’une association en France : - https://www.asperger-amitie.com/
  • 33. 33 https://www.netvibes.com/cra-lorraine#accueil Blogue d’un Français : - https://aspieconseil.com/blog/ Liste de blogues à travers le monde : http://www.asperger-integration.com/les-liens.html#WFC - https://lautisterique.blogspot.com/ Blogue français : http://emoiemoietmoi.over-blog.com/petite-m%8Etaphore-%88-l-usage-des- neurotypiques Blogues suisse et français : https://blogs.lexpress.fr/the-autist/2013/08/26/a-lusage-des-autistes-asperger- guide-de-survie-en-territoire-humain/ https://letremplin-isere.org/en-savoir-plus/liens Autres blogues : - http://www.regard9.ca/blogueR9/2017/04/autisme-asperger-diagnostic- adulte/ - http://les-tribulations-dune-aspergirl.com/ - http://les-tribulations-dun-petit-zebre.com/ - http://52semaspie.blogspot.com/p/sommaire-des-thematiques-de-la- phase-2.html - https://royaumeasperger.com/2016/07/07/autiste-asperger-versus- neurotypique-10-trucs-pour-mieux-se-comprendre/ - https://quebec.huffingtonpost.ca/josae-durocher/autiste-asperger-femme- aspergirls-groupes-web_a_23652705/ - https://femmesautistesfrancophones.com/2017/10/11/caracteristiques- des-adolescentes-autistes-de-haut-niveau-ou-asperger/ - https://monmodedevie.ca/2018/01/25/je-suis-un-aspie/
  • 34. 34 Addendum 3 Position Paper Authors Normand Giroux Ph. D. Psychologist, member of the Board of Directors of the APEA Nina Thomas, B.A., B. Ed., member of the Board of Directors of the APEA Roxanne Latraverse, Admin. Student and member of the Board of Directors of the APEA Note: Document translated from the original French (Québec) by Jacques Lafortune
  • 35. 35 Addendum 4 ARTICLES Sampling of articles published within the past 12 months concerning the DSM-5 and Asperger’s syndrome. 1) https://link.springer.com/article/10.1007%2Fs10803-018-3689-4 “…it could be meaningful to introduce an additional “subtype specifiers” (i.e., Autistic Disorder or Asperger’s disorders)… » 2) https://openaccess.leidenuniv.nl/handle/1887/76975 « current conceptualisation of autism as ‘Autism Spectrum Disorder’ is both inaccurate and dangerous. » 3) https://www.tandfonline.com/doi/full/10.1080/09687599.2019.1649121?scr oll=top&needAccess=true The removal of AS goes against those who call themselves Asperger 4) https://ojs.lib.uwo.ca/index.php/wupj/article/view/7907/6516 We question here the validity of the DSM-5 with regards to the accuracy of the diagnostics provided for Pervasive Developmental Disorders… thus casting doubt of the classifications related to ASD 5) https://www.ceeol.com/search/article-detail?id=757774 This article still refers to « Asperger Syndrome » in its research 6) https://scholarworks.waldenu.edu/dissertations/6657/ The impact of the new DSM-5 construct on mothers of Asperger children
  • 36. 36 7) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6408183/ This article is written in Turkish, but in the introduction « Dear Editor », the author mentions this : « In 2013, the DSM-5 erased all five mentioned diagnostic subcategories of the DSM-IV, proposing a single, all-embracing category of Autism Spectrum Disorder, subdivided into 3 severity degrees (5). In our opinion, this subdivision does not reflect the great clinical heterogeneity of the disorder, and therefore the DSM-5 autism classification requires improvements. » 8) https://insar.confex.com/insar/2018/webprogram/Paper27786.html Title of a presentation given at last year’s INSAR (International Society for Autism Research) conference : « Structural MRI Does Not Support the DSM-5 Unification of the DSM-VI-TR Autism Spectrum Diagnoses » 9) https://www.tandfonline.com/doi/abs/10.1080/20473869.2018.1542561 The article questions the validity of the ASD grouping and suggests further study to determine if having « distinct subtypes or a severity gradient model? » would be useful 10) https://www.sciencesetavenir.fr/sante/cerveau-et-psy/journee-mondiale- de-sensibilisation-a-l-autisme-quatre-pistes-pour-guerir-ce- trouble_122635 This article, from the prestigious Sciences et avenir magazine (France) contains this passage where Dr. Philippe Raymond is quoted: Because they are often endowed with exceptional cognitive abilities - intelligence, synesthesia, memory-Asperger autists are the tree that hides the autistic forest. Yet there is a world between them. "They were put in the same group because they all suffer from social interaction difficulties. But, from my point of view, takes exception Dr. Philippe Raymond, a member of the Chronimed task force, it's not the same thing at all and it's a “scam“ to classify them as autistic”. They are also distinguished, although often confused, from the so-called neurotypical high level autistics. In fact, Aspergers manage to integrate socially and most say, "I am very well as I am", states Florent Chapel, author of Autisme: La grande enquête (Autism: The Large-Scale Survey). Some specialists argue for a requalification of this disorder and a removal from the autistic field. (translated from the original French by J.L.)