1. Sue Loring
Director,
Autism Resource Center of Central MA
Cheryl Chan
Autism Community Leader

2. What keeps parents
up at night?
(Sue)
 91 Respondents
 Day to Day: Top Concerns
 Managing behaviors
 Preventing meltdowns
 Keeping child(ren) safe
 Long Term: Top Concerns
 Who will take care of them when I die?
 Will they be able to live on their own?
 Will they have relationships?

3. What keeps parents
up at night?
(Sue)
 91 Respondents
 Those whose children are likely to have a level of
independence have different concerns.
 TOP 4:
 Managing anxieties
 Being scammed or victimized (tied w/) knowing when to ask for
help
 Self management in the workplace
 Knowing when to ask for help
 These are skills not typically taught in public school
(this population is typically in public schools).

4. What keeps parents
up at night?
(Sue)
 Of NOTE: 7% of respondents checked “homelessness”
as a concern.
 US Dept of Housing and Urban Development study
(2008):
 17.7% of adults in America experience disability
 42.8% of sheltered homeless adults experienced disability

5. Community Engagement &
Transition
(Cheryl)
 Autism Summit – represent a testimonial to the
collaborative process among community members,
school & human service providers, and the medical
community. Community driven projects include:
 “22 at 20”
 Autism Housing Pathways
 Blogs: Successful Transitions & High Octane Autism
 Goal: participate in the development and drive for open
conversation about the transition process, strengths
and weaknesses, necessary changes – engage and
empower the community so they have buy-in.

6. In Their Own Words
 The following testimonials were collected along with the
survey, and are a sampling of the broad and allencompassing concerns of families; concerns that are
causing chronic stress, depression, anxiety and even
more serious mental and physical health issues.
 This epidemic does NOT affect the child alone. Entire
families are in crisis or barely managing, including
parents and siblings.

7. In Their Own Words
Families of Younger Children
 “ I worry whether he is getting the services he needs at
school or if he is getting along with other kids”
 “Dealing with the school is hard”
 “The school’s refusal to address his anxieties, leaves us
alone to address it”
 “You get conflicting advise from professionals
(Psych., Therapists, ICC, DCF, research/books) “
 It’s hard to fit in social skill practice while juggling
work, family and personal life, and keeping the peace at
home

8. In Their Own Words
Families of Teens & Young Adults
 I worry about the viability of the group living facility in which
she lives. Changes during her lifetime.We just did the
transition at 22 and it was an awful process where we were
not sure of her placement until 3 months prior and got
nothing in writing until 1 month prior to her 22nd birthday.
Transition is a trying process and families need to
understand the implications of everything they say about
their child at the intake time. DDS needs to evaluate the kids
at that time, not when they are in their last year of school
services. We are fortunate we had good people on both
sides of the equation who helped us to make the transition
successful. My concern is for people without the resources
available to me going through the same process.

9. In Their Own Words
Families of Teens & Young Adults
 Who will provide the funding to help him have access to a
successful life outside of my care? With IQ above 70, and
High school diploma being given in March......a lot of
dependence on me and my financial ability to support him.
Without an Adult Agency to help, all other things are difficult
to provide in the absence of my presence.
 My concern is adult placement and what type of placement
will be available for my 21 year old son who will be 22 next
January. Transitioning him from an intensive educational
placement to adult placement is frightening as I'm not sure if
he will get what he needs, behaviorally, socially, medically.

10. In Their Own Words
Families of Teens & Young Adults
 Will my child be in a cheerful atmosphere of ,caring, safe,
uplifting and treated with respect. Will he be have stimulating
relationships and continue to grow throughout his life and
not get shelved as a person with disabilities.
 I feel like I'm a member of a club that no one truly wants to
be a part of. We are forced to live our lives differently
because of autism. I try to live life with an optimistic
viewpoint and tell myself that Mary's diagnosis has made us
all more compassionate members of society in the longterm
but there are still those days were I feel like I can't breath
because of the sadness I feel for Mary and all the missed
opportunities she will have because of autism.

11. In Their Own Words
Families of More Able Teens & Young Adults
 “I worry about his future happiness and well being in all
areas as he ages. The social issues, his self-esteem, and
creating a sense of well-being”
 “How do we plan our son's future concerning college/what to
choose as a career? “
 “I am at this time very worried about services for my high
functioning teens. where they may have a higher IQ
however can not take care of themselves, lack problem
solving skills and have huge social deficits. I want them to
be independent but they still will need supports to be
successful and my fear is they will be left with nothing and
only my means to care for them. Laws need to change to
included them in supports for adulthood.”