1. Autism in Minnesota
Heather Fast, Nancy Feist, Jenna Henricks, Sario Omar
Population Based Healthcare, Winona State University
Modifiable Risk
Factors: television,
exercise,
environment,
lifestyle, nutrition
Non
modifiable
risk factors:
genetics,
race, gender
National, State, and Local Data
• Nationally, prevalence is 14.7 per 1000 births for infants born in 2002
• According to the Minnesota Department of Health, in 2007, 1.8% of children had autism, and in
2010-2011, 2.7% or approximately 30,928 children.
• University of Minnesota Somali Autism Spectrum Disorder Prevalence Project
• Somali and white children in Minneapolis are equally as likely to be identified as
having autism spectrum disorder
• 1 in 32 Somali Children
• 1 in 36 white children
• 1 in 62 black children
• 1 in 80 Hispanic children
• Overall 1 in 48 children between ages of 7-9 identified as having
autism spectrum disorder in Minneapolis
• However, Somali children more likely to have intellectual disability when compared
with children in all other racial and ethnic groups, and researchers do not yet know
why
• The study also examined when children were diagnosed
• Around 5 years for Somali, white, black and Hispanic Children
• Children with ASD can be reliably diagnosed at
approximately age 2
Gaps in Care
Research
Modifiable Risk factors not being addressed
Primary Prevention Strategies: “Help me Grow Minnesota”
Secondary Prevention: Follow Along Baby Development Tracker
CDC: Learn the Signs, Act Early
School Screening
Reducing community stigma and perception of ASD
Tertiary Prevention: Early Childhood Special Education Citywide ASD Prevention Program
Individualized Education Plan (IEP)
Free public education from birth to 21 years old
Owatonna Parents Support Group
Rugters: College Support Program for Students on the Autism Spectrum. Fee based program allowing students with ASD
diagnosis thrive and participate in University life.
Levels of Prevention
Nursing Intervention
• U.S. preventative services issued a draft recommendation
stating that there is not enough evidence to support autism
screening for every child.
• Autism advocates are concerned about this, as
autism can be identified as early as 18 months,
and earlier diagnosis leads to earlier intervention
(Fraser, 2015).
Ethical & Political Gaps: False conclusions reached about
environmental contaminants consumed research dollars and
energy to disprove it; setting back research on potential
environmental causes.
Schools have used restraint and seclusion 267,000 times for
non-emergency situations (McIlwan, 2015)
Sociocultural issues: Individuals with autism still face stigma and
misunderstanding about their disorder and hope for
treatment/recovery. In the Somali community: “In our culture, you
are either sane or you are crazy, there is no grey area. So
there is a fear someone will call your child a name behind
your back.” –Somali parent
Economic Issues: Therapy costs money, and most insurance
companies do not pay for therapy costs. Being autistic and from a
lower income background can affect outcomes, which can also be
an ethical issue.
Risks of mortality: Drowning is the leading cause of death with
autism. In 2009, 2010 and 2011, drowning accounted for 91% of
total U.S death in children with an ASD ages 14 years of age and
younger following wandering / elopement (National Autism
Association, n.d.). Also vulnerable to bullying and sexual abuse.
Risks of Morbidity: high comorbidity with epilepsy. Up to 30 % of
children with ASD also have epilepsy. As many as 1 in 20 children
who have ASD either have epilepsy or develop it later in life
(Autism Speaks, 2011).
• Research has had difficulty in identifying which risk
factors lead to autism, and has had contrary results
with regards to folic acid, and has blamed everything
from antidepressant use to air pollutants,, and even
too long or too short of a gap between children
(DeWeerdt, 2015).
• Research thinks that modifiable causes are
environmental, but they have had little evidence
about which environmental factors.
• No clear link between cause and effect has been
demonstrated.
• The discredited research about vaccines and autism
has contributed to skepticism about other
environmental causes.
• You can blood test for genetics, but not for
environment
• Hildegaard Peplau, the “mother of psychiatric nursing” believed in the focus on the nurse-patient
relationship, and when this was introduced, there was no concept of patients actively participating in
their own care (ANA, 2015).
• This is particularly relevant when dealing with individuals who are autistic, when nurses must relinquish
some control in the patient-nurse relationship.
• The nursing intervention for this patient population would involve treating the autistic patient and their
family as unique individuals with unique needs.
• When providing care, this would involve allowing and encouraging caregiver/parental involvement,
using a private room, meeting the patient at their level by allowing them to bring a toy, being careful
with touch and eye contact, allowing extra time for the exam, and using clear and simple language
• An additional nursing intervention would be to utilize early testing, since this would identify the disease
in early childhood when coping strategies and treatments can begin, giving the child greater tools to
cope and succeed in school and interpersonal relationships.
• Nurses should also advocate for healthcare environments to be more accommodating for patients with
autism. These interventions include carefully assessing for pain, since some children with autism have
a higher pain threshold, planning for consistency amongst care providers, and using dolls/diagrams to
avoid confusion and surprises. In addition, care environments should be calming and avoid excessive
stimulation.
• Reducing the need for seclusion and restraints: educating families to help avoid the need for seclusion
and restraints, which can be used in some school environments by staying P.O.S.I.T.I.V.E.
• Prepare to address safety concerns ahead of time by identifying any known meltdown
triggers
• Open the discussion about seclusion and restraint policies. “What is your classroom’s
policy on the use of restraint and seclusion.”
• Submit a letter outlining your specific safety requirements and requests, such as never
using seclusion, requesting that restraints only be used when immediately necessary,
and notification of any health risks.
• Inform: provide teachers with a “do and don’t” sheet for your child including basic
information and asking them to call you instead of the police in case of a meltdown.
• Team up with educators to know and understand what’s happening inside the classroom.
• Invite feedback and recommendations from school staff. They may be seeing behaviors
you don’t in the classroom.
• Volunteer in the classroom and be active in the classroom to promote positive
relationships and allies.
• Educate your child about ways to stay safe in the classroom and about consequences to
behaviors and teach them to communicate if they are unsafe in the classroom (McIlwan,
2015).
• Advanced maternal age at birth
• Maternal prenatal medication use
• Antipsychotics and mood stabilizers-a balance between what is best for
baby and safety of mother
• Valproic Acid (VPA): mood stabilizer and antiepileptic drug shown to
increase autism spectrum disorder. Timing of exposure appears to be key
to extent of risk.
• Nutrition
• Linkage between poor maternal folic acid status and autism related
disorders
• Periconceptional folic acid intake has shown strong evidence for reducing
ASD.
• Fatty acids: decreased ASD risk with maternal polyunsaturated fat intake
• Exposure to environmental agents
• Pesticides, air pollution, especially heavy metals and particulate matter
• Other potential risk factors
• Metabolic syndrome
• Vitamin D intake
• Smoking
There is not a single, identifiable cause for autism.
References
American Nurses Association. (n.d.) Hildegaard Peplau (1909-1999) 1998 Inductee. Retrieved from http://www.nursingworld.org/HildegardPeplau
Autism Speaks. (2011, April 15). Mortality rate is increased in persons with autism who also have epilepsy. Retrieved from https://www.autismspeaks.org/about-us/press-releases/mortality-rate-increased-persons-autism-
who-also-have-epilepsy
Centers for Disease Control. (2015). Data and Statistics. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html
Child Trends. (2013). Autism Spectrum Disorders. Retrieved from http://www.childtrends.org/?indicators=autism-spectrum-disorders
DeWeerdt, S. (2015, November 4). What environmental factors cause autism? Slate.com, retrieved from
http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/what_causes_autism_environmental_risks_are_hard_to_identify.html
Dietert, R.R., Dietert, J.M., & Dewitt, J.C. (2011). Environmental risk factors for autism. Coaction Publications. US National Library of Medicine National Institutes of Health. doi: 10.3402/ehtj.v4i0.7111
Fraser. (2015). Fraser responds to U.S. Preventative Services Task Force recommendation. Retrieved from http://www.fraser.org/About-Fraser/News-Room/Fraser-Responds-to-U-S--Preventive-Services-Task-F
Gardener, H., Spiegelman, D., & Buka,S.L. (2013). Prenatal Risk Factors for Autism: A Comprehensive Meta-analysis. Br J Psychiatry. doi: 10.1192/bjp.bp.108.051672.
Lyall, K., Schmidt, R.J., & Hertz-Picciotto, I-H. (2014). Maternal lifestyle and environmental risk factors for autism spectrum disorders. International Journal of Epidemiology. doi: 10.1093/ije/dyt282.
McIlwain, L. (2015, January 21). Restraint and seclusion: a guide for autism parents. National Autism Association Autism Atrium. Retrieved from http://nationalautismassociation.org/restraint-seclusion-a-guide-for-autism-
parents/
Minnesota Department of Health. (n.d.) Facts and figures: autism spectrum disorder. Retrieved from https://apps.health.state.mn.us/mndata/dev_asd
National Autism Association. (n.d.). Autism and Safety Facts. Retrieved from http://nationalautismassociation.org/resources/autism-safety-facts/
Ohio Nurses Association. (2013.) Understanding Autism Spectrum Disorder. [Continuing Education]. Retrieved from https://ce4nurses.org/understanding-autism-spectrum-disorder
Rutgers Student Affairs. (2015). Autism Spectrum-College Support Program. Retrieved from http://rhscaps.rutgers.edu/services/autism-spectrum-college-support-program/
University of Minnesota. (2013). Minneapolis Somali autism spectrum disorder prevalence project. Retrieved from http://rtc.umn.edu/autism/
![Autism in Minnesota
Heather Fast, Nancy Feist, Jenna Henricks, Sario Omar
Population Based Healthcare, Winona State University
Modifiable Risk
Factors: television,
exercise,
environment,
lifestyle, nutrition
Non
modifiable
risk factors:
genetics,
race, gender
National, State, and Local Data
• Nationally, prevalence is 14.7 per 1000 births for infants born in 2002
• According to the Minnesota Department of Health, in 2007, 1.8% of children had autism, and in
2010-2011, 2.7% or approximately 30,928 children.
• University of Minnesota Somali Autism Spectrum Disorder Prevalence Project
• Somali and white children in Minneapolis are equally as likely to be identified as
having autism spectrum disorder
• 1 in 32 Somali Children
• 1 in 36 white children
• 1 in 62 black children
• 1 in 80 Hispanic children
• Overall 1 in 48 children between ages of 7-9 identified as having
autism spectrum disorder in Minneapolis
• However, Somali children more likely to have intellectual disability when compared
with children in all other racial and ethnic groups, and researchers do not yet know
why
• The study also examined when children were diagnosed
• Around 5 years for Somali, white, black and Hispanic Children
• Children with ASD can be reliably diagnosed at
approximately age 2
Gaps in Care
Research
Modifiable Risk factors not being addressed
Primary Prevention Strategies: “Help me Grow Minnesota”
Secondary Prevention: Follow Along Baby Development Tracker
CDC: Learn the Signs, Act Early
School Screening
Reducing community stigma and perception of ASD
Tertiary Prevention: Early Childhood Special Education Citywide ASD Prevention Program
Individualized Education Plan (IEP)
Free public education from birth to 21 years old
Owatonna Parents Support Group
Rugters: College Support Program for Students on the Autism Spectrum. Fee based program allowing students with ASD
diagnosis thrive and participate in University life.
Levels of Prevention
Nursing Intervention
• U.S. preventative services issued a draft recommendation
stating that there is not enough evidence to support autism
screening for every child.
• Autism advocates are concerned about this, as
autism can be identified as early as 18 months,
and earlier diagnosis leads to earlier intervention
(Fraser, 2015).
Ethical & Political Gaps: False conclusions reached about
environmental contaminants consumed research dollars and
energy to disprove it; setting back research on potential
environmental causes.
Schools have used restraint and seclusion 267,000 times for
non-emergency situations (McIlwan, 2015)
Sociocultural issues: Individuals with autism still face stigma and
misunderstanding about their disorder and hope for
treatment/recovery. In the Somali community: “In our culture, you
are either sane or you are crazy, there is no grey area. So
there is a fear someone will call your child a name behind
your back.” –Somali parent
Economic Issues: Therapy costs money, and most insurance
companies do not pay for therapy costs. Being autistic and from a
lower income background can affect outcomes, which can also be
an ethical issue.
Risks of mortality: Drowning is the leading cause of death with
autism. In 2009, 2010 and 2011, drowning accounted for 91% of
total U.S death in children with an ASD ages 14 years of age and
younger following wandering / elopement (National Autism
Association, n.d.). Also vulnerable to bullying and sexual abuse.
Risks of Morbidity: high comorbidity with epilepsy. Up to 30 % of
children with ASD also have epilepsy. As many as 1 in 20 children
who have ASD either have epilepsy or develop it later in life
(Autism Speaks, 2011).
• Research has had difficulty in identifying which risk
factors lead to autism, and has had contrary results
with regards to folic acid, and has blamed everything
from antidepressant use to air pollutants,, and even
too long or too short of a gap between children
(DeWeerdt, 2015).
• Research thinks that modifiable causes are
environmental, but they have had little evidence
about which environmental factors.
• No clear link between cause and effect has been
demonstrated.
• The discredited research about vaccines and autism
has contributed to skepticism about other
environmental causes.
• You can blood test for genetics, but not for
environment
• Hildegaard Peplau, the “mother of psychiatric nursing” believed in the focus on the nurse-patient
relationship, and when this was introduced, there was no concept of patients actively participating in
their own care (ANA, 2015).
• This is particularly relevant when dealing with individuals who are autistic, when nurses must relinquish
some control in the patient-nurse relationship.
• The nursing intervention for this patient population would involve treating the autistic patient and their
family as unique individuals with unique needs.
• When providing care, this would involve allowing and encouraging caregiver/parental involvement,
using a private room, meeting the patient at their level by allowing them to bring a toy, being careful
with touch and eye contact, allowing extra time for the exam, and using clear and simple language
• An additional nursing intervention would be to utilize early testing, since this would identify the disease
in early childhood when coping strategies and treatments can begin, giving the child greater tools to
cope and succeed in school and interpersonal relationships.
• Nurses should also advocate for healthcare environments to be more accommodating for patients with
autism. These interventions include carefully assessing for pain, since some children with autism have
a higher pain threshold, planning for consistency amongst care providers, and using dolls/diagrams to
avoid confusion and surprises. In addition, care environments should be calming and avoid excessive
stimulation.
• Reducing the need for seclusion and restraints: educating families to help avoid the need for seclusion
and restraints, which can be used in some school environments by staying P.O.S.I.T.I.V.E.
• Prepare to address safety concerns ahead of time by identifying any known meltdown
triggers
• Open the discussion about seclusion and restraint policies. “What is your classroom’s
policy on the use of restraint and seclusion.”
• Submit a letter outlining your specific safety requirements and requests, such as never
using seclusion, requesting that restraints only be used when immediately necessary,
and notification of any health risks.
• Inform: provide teachers with a “do and don’t” sheet for your child including basic
information and asking them to call you instead of the police in case of a meltdown.
• Team up with educators to know and understand what’s happening inside the classroom.
• Invite feedback and recommendations from school staff. They may be seeing behaviors
you don’t in the classroom.
• Volunteer in the classroom and be active in the classroom to promote positive
relationships and allies.
• Educate your child about ways to stay safe in the classroom and about consequences to
behaviors and teach them to communicate if they are unsafe in the classroom (McIlwan,
2015).
• Advanced maternal age at birth
• Maternal prenatal medication use
• Antipsychotics and mood stabilizers-a balance between what is best for
baby and safety of mother
• Valproic Acid (VPA): mood stabilizer and antiepileptic drug shown to
increase autism spectrum disorder. Timing of exposure appears to be key
to extent of risk.
• Nutrition
• Linkage between poor maternal folic acid status and autism related
disorders
• Periconceptional folic acid intake has shown strong evidence for reducing
ASD.
• Fatty acids: decreased ASD risk with maternal polyunsaturated fat intake
• Exposure to environmental agents
• Pesticides, air pollution, especially heavy metals and particulate matter
• Other potential risk factors
• Metabolic syndrome
• Vitamin D intake
• Smoking
There is not a single, identifiable cause for autism.
References
American Nurses Association. (n.d.) Hildegaard Peplau (1909-1999) 1998 Inductee. Retrieved from http://www.nursingworld.org/HildegardPeplau
Autism Speaks. (2011, April 15). Mortality rate is increased in persons with autism who also have epilepsy. Retrieved from https://www.autismspeaks.org/about-us/press-releases/mortality-rate-increased-persons-autism-
who-also-have-epilepsy
Centers for Disease Control. (2015). Data and Statistics. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html
Child Trends. (2013). Autism Spectrum Disorders. Retrieved from http://www.childtrends.org/?indicators=autism-spectrum-disorders
DeWeerdt, S. (2015, November 4). What environmental factors cause autism? Slate.com, retrieved from
http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/what_causes_autism_environmental_risks_are_hard_to_identify.html
Dietert, R.R., Dietert, J.M., & Dewitt, J.C. (2011). Environmental risk factors for autism. Coaction Publications. US National Library of Medicine National Institutes of Health. doi: 10.3402/ehtj.v4i0.7111
Fraser. (2015). Fraser responds to U.S. Preventative Services Task Force recommendation. Retrieved from http://www.fraser.org/About-Fraser/News-Room/Fraser-Responds-to-U-S--Preventive-Services-Task-F
Gardener, H., Spiegelman, D., & Buka,S.L. (2013). Prenatal Risk Factors for Autism: A Comprehensive Meta-analysis. Br J Psychiatry. doi: 10.1192/bjp.bp.108.051672.
Lyall, K., Schmidt, R.J., & Hertz-Picciotto, I-H. (2014). Maternal lifestyle and environmental risk factors for autism spectrum disorders. International Journal of Epidemiology. doi: 10.1093/ije/dyt282.
McIlwain, L. (2015, January 21). Restraint and seclusion: a guide for autism parents. National Autism Association Autism Atrium. Retrieved from http://nationalautismassociation.org/restraint-seclusion-a-guide-for-autism-
parents/
Minnesota Department of Health. (n.d.) Facts and figures: autism spectrum disorder. Retrieved from https://apps.health.state.mn.us/mndata/dev_asd
National Autism Association. (n.d.). Autism and Safety Facts. Retrieved from http://nationalautismassociation.org/resources/autism-safety-facts/
Ohio Nurses Association. (2013.) Understanding Autism Spectrum Disorder. [Continuing Education]. Retrieved from https://ce4nurses.org/understanding-autism-spectrum-disorder
Rutgers Student Affairs. (2015). Autism Spectrum-College Support Program. Retrieved from http://rhscaps.rutgers.edu/services/autism-spectrum-college-support-program/
University of Minnesota. (2013). Minneapolis Somali autism spectrum disorder prevalence project. Retrieved from http://rtc.umn.edu/autism/](https://image.slidesharecdn.com/03a3d9f3-dc85-4f27-941e-491c26d8c730-160901144617/85/AutismGroupPresentation_v2-1-320.jpg)
