Trying to Get it Right
November 15, 2007 by Kristina Chew, PhD
Filed under Baby, Family, Genetics, Health
I am honored to have Gabrielle Sedor from Fertility Notes guest posting today.
I am a newcomer to the field of autism services. But then again, I am not. I have worked in the field of intellectual disabilities (or, mental retardation, as some still call it) for almost ten years. As autism started making headlines on a daily basis (CDC Reports 1 in 150 Children Are on the Autism Spectrum; Vaccines Ties to Autism, or Are They?; New Autism Charity Founded….) the association where I work decided to query our members to see what kind of experience they had providing services to people living with autism.
Over 90% of them told us they had been doing it for years. We were totally taken by surprise. But we shouldn’t have been.
In the absence of an autism service system in Pennsylvania, most of the time the only way a person living with autism could receive services beyond early intervention was to receive them through the mental retardation or mental health systems. So, by default, many of our service providers - and by that I mean residential facilities, day programs, job training sites and the like - had been providing services to people with autism. But few would say they are providing autism services. This is something we are all trying to learn how best to do.
This year has been a landmark year in PA - we acquired a new Bureau of Autism Services, led by a phenomenal woman and mother of a son with autism. We have a Speaker of the House who is the most vocal advocate we have ever seen and therefore, now, for the first time ever, have some substantial funding to begin to develop what services and supports for chidren and adults with autism might look like. We are lucky to have an extensive Task Force Report to serve as a blueprint and the brilliant minds of Nancy Minschew from the University of Pittsburgh’s Center for Excellence in Autism Research and David Mandell at the University of Pennsylvania. But we are all still learning. And we count on parents like Kristina, discussions like the ones here and self-advocates like William Stillman to guide us.
I listened to Bill Stillman a few weeks ago and he said,
There is an autism epidemic, but it has nothing to do with the increased diagnosis of children and toddlers. The epidemic, the crisis, are the calls to me from young adults and teenagers with autism who are severely depressed, sometimes suicidal, because they have grown up constantly hearing about their deficits and what is missing in them.
Bill’s statement tells me that no matter how much time and money we spend looking for a “cure,” how much is put into research and awareness or how many ribbons we wear, we cannot forget about children like Charlie, the millions of other children and adults living with autism, and the relationships and the support they need right now. Bill’s talk was all about relationships:
Honor your commitments. People with autism are very literal, and trust erodes when we don’t do what we say we are going to do.
So, here we are Pennsylvania, trying to honor our commitments to people with autism and their families. But the learning never stops.
Jeff Stimpson
Jill Cornfield
Ooo so it looks as if you sort of traded places today? I think we all just have to keep plugging away as there’s no golden bullet to enlightenment.
Best wishes
Sort of—still here, going back and forth! No magic pill either, but plenty of hard work and good heart.
That is great that the system is working harder there to include autistic people.
We don’t qualify for services here in Indiana for various reasons. One, they say we make too much money, second is that Maizie is no longer considered mentally retarded even though her skills are all over the place. Here in order to get help you have to be mentally retarded. Third, she was finally placed on an autism waiting list but the waiting list is over ten years long. By the time she is moved up she will be almost twenty, maybe a little younger. That sure does not help us at all now. We have given up in getting services and pay for any services we want out of pocket. It has majorly stressed our finances. We had to scale way down to a small house, I can not work and we go without most services. Luckily, I read all I can and have done sensory/educational/therapy stuff on our own because we had no choice. In some ways I have come to like being off the grid….having no agencies or schools telling us what to do. Our life is quiet that way. But, respite care would have been very nice. I will also say that many times when we did seek help professionals were more confused about Maizie than we were. All we ever heard was, “Wow. She is a very very complicated child.” Followed by a whole list of ideas that we had tried. It made me think that we can research and do much of it on our own. Possibly, that is not healthy or the best way but I guess we found a way to survive doing it.
“People with autism are very literal, and trust erodes when we don’t do what we say we are going to do.”
How fitting that this comes up during a presidential election year.
My trust in the good will of the USA has been eroded by the inaction of the alternative and medical communities, falsehoods spread by so called autism adocates, and the federal government and other po-lie-ticians.
Patrick,
Where on Earth can anyone move that does have good will towards ASD and does not have po-lie-ticians?
Please stop using “with autism”
say autistic come on gabrielle it isnt hard. you are a big girl now all grown up. I know you can do it.
Well, you can try moving someplace where politicians have family members with ASD and other disabilities and actually experience firsthand the needs of the populations and how hard it is to get services and supports that help the family and the person on the spectrum.
Or you can invite folks you see as po-lie-ticians to spend some time with real people with real needs.
It doesn’t always work and like Kristina said, there is never a magic pill, but I have found that sometimes when you actively engage a politician, its much harder for him/her to convince himself/herself that action needs to be taken.
She’s self-proclaimed as being new, so to aggressively push that point, even if it has merit, is distasteful, especially phrased like that.
Cliff
On the other hand, I’ve had some pretty good luck with politicians. They’re not all good, certainly, but I’d have issues going after the whole.
Of course, it seems we can’t get a bill with decent services past the president, so on a national level it seems it only takes one to screw it up.
Cliff
The ASMan, I am sorry if I offended. Please note, I am quoting Bill Stillman in several of the instances you reference. The words aren’t mine.
When the words are mine, I admit, that I don’t know what to say and it seems that the words that are preferred by one set of folks really bother others. In talking with parents, it seems that “living with autism” is what they prefer, but I do know that “autistic” is a term that others use and want.
I am very open to the discussion and debate. As I said, I am still learning.
Bill Stillman , isn’t he that guy who says aspies have a special spiritual gift of conversing with angels?
It’s not so much a matter of PC ethics, but how you see autism and autistic people. People who prefer “with autism” seem to see ASD as an affliction, disease, or barrier to what otherwise would a “normal” person. People who prefer “autistic” see it as a natural descriptor, an extension of who they are.
This is no surprise to me. My son got an MR diagnosis from the school psychiatrist when we were transitioning. My advocate and I got them to make autism the primary diagnosis, and keep MR as the secondary diagnosis. That was after talking to his support team. The MR got him Medicaid, which got him a home aide and a TSS, and pays for his seizure medication. Huge. He even went to an MR camp this year, which he enjoyed immensely.
The Speaker you mentioned is trying to get a bill passed to force the private insurance companies to pay for autism. There are indications that any money freed up by that would be allocated to additional autism resources.
I had a conversation yesterday with a father of a 23 year-old autistic. He is upset with how little support his adult son is getting. This is not an issue we can allow to be kept quiet.
One thing I am determined to make sure happens is that my son is aware of the community of autistics to whom he belongs. This next year, I am hoping to go with him to Autreat. I had explored it a couple of years ago when he was 6, but decided to wait until he was a little older. But I remember e-mailing Jim Sinclair at the time, and asking how my son would benefit. He responded by asking if my son had ever met an adult autistic.
How strange that this:
“the calls to me from young adults and teenagers with autism who are severely depressed, sometimes suicidal, because they have grown up constantly hearing about their deficits and what is missing in them.”
could evoke a call for relationships and support. To me it looked like an ordinary call for validation - you know, that without which a person cannot succeed in anything no matter what label they are or are not wearing.
The “MR” label has not been officially given to Charlie. I do think that, in a previous generation, this would have been his diagnosis and not autism, due to his language disability, “behaviors,” and more. I did find it interesting that Stillman is trying to use the word “epidemic” in a different way in regard to autism, though I think the word more troublesome than helpful.
Here is that looney stillman’s website
http://www.williamstillman.com/connection.html