Easter Seals Living with Autism Survey

by Dora Raymaker · 2009-03-07 12:08:00 UTC
Topics:

a question mark sign attached to an industrial steel beam, the angle of the photo includes an industrial looking ceilingEaster Seals has published the results of their Living with Autism survey, which asked parents questions about their concerns for their child's long-term independence, finance, quality of life, and other items. An excerpt of the findings from that later link,

Parents of children living with autism are very concerned about their children fitting into society, with very few feeling their children will be able to:

* Make his or her own life decisions (14% compared to 65% of parents with typically developing children)
* Have friends in the community (17% compared to 57% of typical parents)
* Have a spouse or life partner (9% compared to 51% of typical parents)
* Be valued by their community (18% compared to 50% of typical parents)
* Participate in recreational activities (20% compared to 50% of typical parents)

The above percentages come from the perceptions and concerns of parents, not a survey of concrete outcomes for adults on the spectrum. In other words it is not a "fact" that only 9% of all autistic people have a life partner, it is that only 9% of all parents surveyed feel that their child will have a life partner in adulthood.

What can be done to change this sort of perception of failure? What are the main causes of this perception? Does this perception of failure have any sort of negative impact on the children?

What is the actual outcome for adults (both autistic and non-autistic/non-disabled) in these areas, rather than the percieved outcome by parents? In other words, how warranted are the parent concerns? (Existing research on adult outcomes for individuals on the spectrum is extremely sparse.)

What is the next step to take from surveys of this sort? Easter Seals says,

Easter Seals will use the study results to raise awareness of and advocate for the life-long services millions of families living with autism desperately need -- including school to work transitions, employment support, residential and community support, and financial planning.

"For parents of kids with autism, there are no simple answers," adds Wright. "There is an urgent need for increased funding and services -- especially for adults with autism. Easter Seals wants to help change all of this and make a difference for families living with autism today."

Are there plans for autistic adults to also be surveyed to find out how they perceive their own needs, what their concerns for their own lives are? Do adults have different priorities for themselves from the parents of younger children?

Dora Raymaker
PREVIOUS STORY:
The Merry-Go-Round of Escalating Costs
NEXT STORY:
Why I'm Asking Aetna to Cover My Surgery

COMMENTS (6)

    Comment Policy

    · All fields are required to comment.

    [X]

    Comments on Change.org are meant for further exploration and evaluation of the campaign on Change.org. To that end, we welcome constructive comments. However, we reserve the right to delete comments which, as determined solely in our discretion: (1) are offensive, abusive, or off-topic; (2) include content solely intended to personally attack the campaign creator, (3) are designed to subvert or hijack comment threads rather than contribute to them; and/or (4) violate our terms of service and/or privacy policy. Repeat offenders may be permanently removed from the site at our discretion. Please also be advised that: (A) we do not actively curate and/or monitor in any manner whatsoever the comments made on the Change.org platform, and (B) the creator of each campaign on Change.org may remove any comment at her/his/its discretion.