13 July, 2006

It's a duck!

When Connor was a little younger, he was in an early intervention program designed to work with high functioning Autistic children and prepare them for mainstreaming in traditional schools. Connor rode to school on a bus, along with another autistic child who was in the same program, although he was in a different class. Connor and this other child became friends and Connor even attended his birthday party. As our sons played, my wife and I got to know the child’s parents… two great people. While our methods, as parents, may have differed when it came to how we viewed and treated Autism, our dedication to our child’s well being was the single most important driving factor.

Although Connor and the other child have gone off to separate schools and don’t see each other anymore, I still keep in contact with the child’s mother. This is made much easier, as we are on a community groups Board of Directors together. Periodically, we give each other updates on how our sons are dealing with things and what type of resources we are making use of.

Most recently, the mother informed me of a rather unique struggle that they are going through. This struggle is caused by an issue with the child’s original diagnosis and the services available to him. You see, when they originally became involved with the regional center, he was diagnosed as PDD-NOS. For those that are unaware of this diagnosis (admittedly, I was unaware of it until Connor was diagnosed with Autism) PDD-NOS is the catch-all diagnosis for a person who meets some, but not all, of the criteria of Autism, Asperger’s Syndrome, or Rett Syndrome. At first, this diagnosis did not seem to be a hindrance, as the early intervention programs worked with all pervasive developmental disorders. Unfortunately, as he moved on to a traditional public school, issues became more evident. This has been, unfortunately, exasperated by the increasing budgetary problems facing the schools.

The most interesting part of this whole story is that the mother is actively pursuing a second opinion on her son’s diagnosis, hoping that during a re-evaluation, they will see the traits her and her husband have always seen and will change the diagnosis to Autism. You see, although there may be only one criterion out on the DSM-IV differentiating Autism and PDD-NOS, the level of services are different. In fact, in some cases, people diagnosed with PDD-NOS are not even considered for services that are offered to people diagnosed with Autism, Asperger’s Syndrome, or Rett Syndrome.

It is truly an unfortunate fact that in the world of Pervasive Developmental Disorders, if you don’t have Autism, you are somehow less deserving of services. This is truly disturbing when you look at the variation in the severity of symptoms between individuals with Pervasive Developmental Disorders. It is not uncommon to find a person who has severely impaired speech, social, fine motor skills, etc... who does not meet the criteria for Autism, while finding another person who is very mildly impaired in speech, social, fine motor skills, etc… that meets all of the criteria. By the standards of care that we see today, the person who, realistically, is less impaired would be more likely to get services than the person who is more severely impaired.

Even worse, this concept of different services based on diagnosis is leveraged by providers to lessen their costs. I have heard of many stories in which a school district or regional center has requested that a child be re-evaluated, to see if they still meet the criteria of the original diagnosis. And that, my loyal readers, is the most disturbing trend that has come out of this. It frightens me to think that the people who profess to have our children’s best interest in mind are actually working off a checklist of symptoms, to the ultimate goal of preventing them from getting services.

In the long run, this comes down to a debate on what Autism really is. For those that (wrongly) believe that it is a disease, the system works right. The services are seen as steps to recovery and the re-evaluation is simply a progress check. For those, like myself, who understand that Autism is a fundamental difference in the way the brain is structured and how it functions, there can be no cures, only work-a-rounds and coping techniques. You can’t simply re-wire someone’s brain to function neurotypically.

At the heart of this, the solution is simple. Services should be offered equally to anyone with a pervasive developmental disorder. This will drastically reduce the desire to re-evaluate someone every year to see if they have had enough training in eye contact, controlling their environment, etc… and can be diagnosed as PDD-NOS, there by lessoning the “burden” on the provider.

What it all comes down to is that if it looks like a duck, it quacks like a duck, and walks like a duck… it’s a duck.


Anonymous MommyTof3 said...

I am one of the mothers you described talking about fighting for a son with PDD-NOS in the school system. It is VERY frustrating-not even near enough to describe what my son and myself have gone through this past year-fighting from qualifying to providing education to the staff. EVERTHING is a battle!!!I went outside the school as the school refused to even look at their own test scores-which all pointed to an ASD. I even had to go to the state Dept of Ed to be heard-and surprisingly she was in agreement with everything I said. Just wanted to let you know that there are many of us out here who have to fight soooo hard to be heard by the schools. Its nice to know that there is understanding somewhere else too :)

14 July, 2006 15:05  
Anonymous JenF said...

We've just started on this road- though knowing something was different about Ky for a long time, he's only just been diagnosed with Asperger's. We've been incredibly lucky to land in a school system with a great SPED department and folks there that really seem to have his interests at heart.

I've spent this morning hitting a few of your past entries - starting with your Intro in February, just to get some background. While Ky is what I would call 'just in the door' with Asperger's - I see traits in myself as well. And I have to say that recognizing traits in myself, certainly helps me look at things from Ky's point of view sometimes.

Thanks for the blog - :-)

15 July, 2006 05:57  
Anonymous Mom to Mr. Handsome said...

You totally hit the nail on the head! Our public school refered to Autism as someone having "tendencies" that may work themselves out in a few years. I replied with "Either you're Autistic or not. You don't just have tendencies." Gabe has been diagnosed with PDD-NOS and we are having the same problem. Just because you are diagnosed as such, does not mean that you are "mild" or "sort've on the spectrum"- like I said ..either you are or you're not, no better or worse. Thanks for writing what needed to be said. I only wish the people that needed to read what you wrote could see it also.


15 July, 2006 11:08  
Anonymous Susan said...

Hey Brian,

My daughter Julia just turned 15 and was diagnosed at age 3 by Dr. Bennett Leventhal at the University of Chicago. At the time, even though I had a master's degree in education, I missed it-- maybe because she was my first child. I thought she might have had a hearing problem. I stumbled across your website today when looking for something that said, "I Have Autism." Believe it or not I have been saying for the last 10 years that I wanted to make a t-shirt for her that said I "Have Autism-- What's YOUR excuse?" She is a great kid and has taught me infinitely more that I will ever teach her. Our experience has been good.

22 August, 2006 06:37  
Anonymous Sandrissimo said...


I live in Europe and for some reason, it always takes some time for idea's, treatments and way's of dealing with for example AD(H)D and autism, to travel to our side of the ocean. Especially in the minds of doctors and caretakers.

My son was diagnosed autistic when he was 6 years old. It makes me feel bad to say that in the past, I was always hoping that we could make him "close to normal" of more or less "cure" him.

He is 14 now and really bright, he attends a regular highschool and although it isn't easy he has always made it.

I've searched the net when he was diagnosed, read lot's of books and sometimes got lost in all this different ways of relating to the subject.

Today I had a discussion with someone about de difference between PDD-NOS and autism and Asperger syndrome.

I have the rather annoying habit of always wanting to be right, so I started searching and came by the term neurotypical. I was a bit familiar with the term, I had seen it before but now I googled it and a whole new world opened for me!

As we had noticed that our son looked a bit depressed and because the school had also mentioned it to us, we have tried for some time to build up his self esteem. I showed him all these positive sites. I saw how it encouraged him, it's a pitty that it's all in english. He has a good notion of the language, but some texts need translation for him. Who am I fooling, some texts are even difficult for me, English is not my native language.

Now I don't really consider myself neurotypical, I have ADHD and so my way of thinking also doesn't match the majority. I know that strictly, I am, but like an autistic person, all my life I was different than most people. Only a few years ago I found out why I was different from the majority.

How foolish I was, demanding the world to accept me as I was en at the same time trying to "convert" my son to the normal world.

I've really learned something to day.


30 November, 2006 10:11  

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