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 I have to tell you that I have to question why they would use such an outdated statistic on a brochure for a Center they are just now starting.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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Hi! I live in OK too! Okay. So don't take this the wrong way, but are you finding ANYTHING GOOD educationally in OK? I have fought for 5 yrs for help for my dd and finally they have approved ABA for her in our school. But this is new for them and they don't have any experienced resources. I don't like to post details so publically about my city/school stuff. I would like to email you if you want! My friends and I started a support group and we want to figure out a way to build a school for autistic children. I'm sick and tired of OK spending wastefully such as 3 million dollars on changing the roof of the capital to be a dome shape, yet leaving 4 million dollars sitting in the high needs student fund with rules for schools so strict they can't qualify for the money!
UGh. anyways, I'm not normally that outspoken about our state and we stay very positive as a group as a whole. I didn't make the walk this weekend, but I know several of our families in our group attended. Anyways, I love to meet people near me.
Take care,
Jess
I'm very new to this so I don't know for sure yet but it doesn't seem like they are forerunners in the Country as far as needs for AS kids. So far, we've just gotten our diagnosis from OU Child Study Center, gotten him set up with an IEP in a special ed class (because he's too young for pre-school) and I've got a meeting with SW Memorial OT/PT & Speech path for additional therapy through my insurance. I've contacted a doctor in OKC whose office recommended a local teacher to come talk to me about starting behavioral therapy in my home but I'm not sure how to get anything implemented at school - I'm going to ask her about that when I meet with her on Thursday.
Yes! I'd love to meet you - please feel free to email me and let's figure out if we live anywhere near each other. How do we do this? Do I post my home email address here?
Carmen
Carmen,
No offence, -and i am not getting at you here. The questions below are retorical.
However.
visit my blog at www.onesickmother.com
As a spectrum mom as well as somebody who once passed as a marketing professional this information burns me on multiple levels. As a mom, the information makes me want to scream BS! As a marketing professional, it makes me want to scream FALSE ADVERTISING!
I've been in a fair number of meetings where local politicians, CEO's and the like wanted to "coax the numbers" just enough to ensure they had the impact they desired. They weren't actually creating numbers, but they were certainly misrepresenting the ones they had. This seems to be a similar situation, especially considering the response made it sound as if the person was hoping these figures could be used to secure services. It's simply inappropriate.
Amy
I am in agreement with Amy. I think it is basically propaganda.
However, that said I have 2 thoughts.
1) Holding down jobs and living independently IS going to be harder for our kids than NT kids and we need to accept that and address it beginning very early. It is IMPERITIVE we teach them independent living skills using methods that work for them such as doing laundry, cooking, etc. They likely will not learn it on there own. We also need to teach them a good work ethic, workplace skills, etc. Don't count on the education or other support systems to do a good job of this. Start early thinking about what the child is good at and what their needs are and start teaching early the skills it will take to get there.
We also need to teach them self-advocacy/ self-determination skills. It starts now with giving them choices and having them learn to speak up for themselves as people and what they want. Getting them involved in groups like People First (group by and for people with SN to promote and teach self-advocacy)
and 2) I believe the stats of self independence are much much higher than this. I have met through the internet, in person as well as at conferences a fair number of adults with special needs, particularly autism and that 2% just doesn't fly. Not that it is easy, and not that all are successful but with the right supports and teaching they sure can be.
Renee
Yes if you don't mind. My email has my full name and I don't feel comfortable in posting it. But I don't mind giving it to you privately by emailing you directly. I am just weird about that. We are trying to get our website and emails set up for our group.
Are you starting ABA therapy? We did/do that with a well known consultant to this area. She is awsome.
Look forward to talking to you.
Jess
I'm in the process of trying to get a program set up and would love any info you've got!
Thanks and I look forward to talking with you,
Carmen
Hello-
I'm new to this board, but just want to add my two cents about this 2% statistic. Although Asperger's Syndrome was identified somewhere around 60 years ago, it was largely forgotten for decades and has really only received widespread attention within the past ten years or so. That means that except for those adults whose impairment is so severe as to substantially interfere with or preclude independent living, most adults with Asperger's have never been identified and diagnosed.
Basically, the numbers are skewed because they are heavily sampling from the most severely impaired segment of the AS population. I doubt that we will have any meaningful statistics measuring Asperger's Syndrome's effect upon a person's chances to live independently until the generation of Aspies currently in grade school reaches maturity.
For example, my wife and I have suspected that my son Liam is an Aspie and are making arrangements to have him tested. In the course of researching the condition, we have come to the realization that I too suffer from Asperger's. In spite of never receiving treatment or specialized support, I attended college, am married to an incredible wife, have two amazing children, own a home, and am gainfully employed. Don't get me wrong, AS is a definitely a challenge, and my life would have been much easier without it, but I and many others have grown up with it, survived it and have even managed to build successful lives with it without anyone's notice and without ever showing up in any of the statistics on AS.
Sorry to jump in and go on at length like this but people with AS do have to work a little harder than other people and a big part of that work is simply not giving up. A deeply suspect statistic like the one in that pamphlet can only demoralize parents and children whose greatest challenge is discouragement and whose greatest hope is hope itself. It also stigmatizes those of us who live with the challenges of AS everyday.
Edited 6/5/2007 9:43 pm ET by idaphne63
Thanks and I hope it helped.
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