Sue LoringDirector,

Autism Resource Center of Central MA

Cheryl ChanAutism Community

Leader

What keeps parents up at night? (Sue)

91 RespondentsDay to Day: Top Concerns

Managing behaviorsPreventing meltdownsKeeping child(ren) safe

Long Term: Top ConcernsWho will take care of them when I die?Will they be able to live on their own?Will they have relationships?

What keeps parents up at night? (Sue)

91 RespondentsThose 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).

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 disability42.8% of sheltered homeless adults experienced

disability

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 PathwaysBlogs: 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.

In Their Own WordsThe following testimonials were collected along

with the survey, and are a sampling of the broad and all-encompassing 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.

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

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.

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.

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.

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.”