Dismal Statistic...
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| Tue, 04-03-2007 - 7:27pm |
Hi Guys!
As y'all know, we are very newly diagnosed with PDD-NOS and trying to get involved, meet people and find resources. So, I was very excited to join the Autism Walk this past weekend in Oklahoma City. Our family raised over $870 dollars and I was proud to be involved. Anyway, I've been so encouraged by talk of prognosis with early intervention, etc...It's hope like this that makes me want to walk and support Autism Research.
However, I was VERY concerned by a pamphlet I received at the Walk by Edmond Family Center for Autism. The pamphlet states "Even with "normal intelligence," adults who have autism or Asperger's Syndrome have less than 2% chance of living independently."
I had NEVER seen that (dismal) statistic anywhere in my research and wondered what their source was because no sources were listed at all on their pamphlet except the introduction on the pamphlet which had a blurb taken from www.autismspeaks.com.
I voiced my concern on the Okla-parent-network and got the following response (see below). I have to tell you that I have to question why they would use such an outdated statistic on a brochure for a Center they are just now starting. This is the kind of information that can really scare, depress and make some parents feel that there is no hope. I believe one of you wrote about hope recently and comforted me with info that even your husband is an Aspie and functions fine in this world.
It just really bothered me as I've read so many encouraging things such as the following on OK Autism Network:
Misconception: Autism is a life-long disability.
Reality: With appropriate treatment, almost 50% of individuals with autism will
become indistinguishable from the mainstream population. Many others
will develop independent living skills. A small number will require support throughout their lives.
Thanks for listening!
Carmen
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Hi Carmen,
Thank you for asking about the statistic that was printed in the Edmond Family Center for Autism. I hope this statistic does not discourage any parent. Remember, these are studies of adults-most of who did not have as many effective interventions as what we have today.
I do hope the statistics can be used to help you build a case with your school and educators for better services for your children. Here are the references for the statistics. I used this information to build a case for the Edmond Public Schools to provide more social skills training .
Attwood, T. (2000). Strategies for improving the social integration of
children with Asperger Syndrome. Autism, 4, 85-100.
Bernard, J., Harvey, V., Potter, D., & Prior, A. (2001). Ignored or
ineligible? The reality for adults with autism spectrum disoders. London:
The National Autistic Society.
Gagnon, E. & Robbins, L. (2001). Ensure success for the child with Asperger
syndrome. Intervention in School and Clinic, 36, 306-307.
Gutsein, S.E. & Whitney, T. (2002). Asperger syndrome and the development of social competence. Focus on Autism and Other Developmental Disabilities, 17(3), 161-171.
Safran, S.P., Safran, J.S. & Ellis, K. (2003). Intervention ABCs for
children with Asperger syndrome. Topics in Language Disorders, 23(2),154-165.
i. The majority of adults with Asperger are unemployed or underemployed, unable to
live independently, and without significant social relationships (Gutsein &
Whitney, 2002; Bernard, Harvey, Porter, & Prior, 2001)
1. 37% report no participation at all in social activities
2. Only 12% engaged in full time employment
ii.
Students with Asperger need additional support to succeed in school,
particularly in the areas of social skills and emotional regulation.
iii.
Research indicates that when teaching social skills, students must have the opportunity to practice the skills in real life settings to promote generalization of the skill (Fogel, 1993).
iv. Peer
mentors can be effective as one means of support (Gagnon & Robbins, 2001;
Attwood, 2000)
I hope this is helpful.
Take care,
Melinda Lauffenburger
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I wanted to just jump in welcome you to the board as a parent, and also to
visit my blog at www.onesickmother.com
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