Tuesday, November 9, 2010

Being Written Off


Yesterday was the first day of the two day Parents as Teachers national conference. As I have said before, I truly enjoy working a booth at a conference because I am able to interact with people much better than in an open ended environment because the conversations are centered around my life on the autism spectrum. I generally like to be the one talking, but what I heard yesterday may change me forever.

It began with one person telling me this and I took it as an isolated incident. I heard it twice and began to ponder it, but when I heard it a third time I turned to Matt, the Community Liaison for TouchPoint, and said, "That's IT! I have to blog about this tomorrow! I am angry!"

Hearing it three times was not the end of it and by the time I had to leave I had heard it six times. Five of those abominations came from the same geographical region of the US, but I am not in the business of pointing a specific group out so I won't mention it.

What did I hear that got galled me? I heard story after story of the school systems that denied that autism or Asperger's needs treatment. The story that was truly devastating, and the one I told Matt I was going to write about, was a case where a teacher had told me that she had gone to the principal, and then the superintendent. She told them that a student in her class had Asperger's and had some needs in the classroom. The principal saw the IEP and said, "That's just a piece of paper, that means nothing." The family appealed and it went to the superintendent who said, "What this paper says won't help. There's nothing we can do."

"Nothing we can do?" So, let me get this right: an autism spectrum disorder means that the school system and all those involved should just give up? It's not worth the resources so we should just write off the student and move on? ARE YOU AS ANGRY AS I AM?

I heard five similar stories so I know it can't be a fluke. If I had heard it once then I would be concerned, but would not write such a fierce article. I have to wonder though, if I heard this type of story six times in less than 250 interactions, just how many parents, teachers, or members of the ASD community get told this? How many families are told that there is no hope for those on the spectrum?

The only word I can find to describe my emotion yesterday is RAGE! As I stood there it BOILED. I so badly wanted to talk to these uninformed teachers and staff. Autism and Asperger are not just words on an IEP. They are an over-arching burden that deeply affects families and children. To be generous, I will give a school system, principal, superintendent, or even a teacher the benefit of the doubt because they might know nothing about the autism spectrum. If they do, well, THESE PEOPLE ARE CRIMINALS.

I feel this way because I'v been there. I was at that point where I felt hopeless. At this point in time, I was out of the school system, but feeling helpless, needlessly, should not happen.

Did the school system fail me? I can't say it did because Asperger Syndrome didn't exist in terms of being recognized as a diagnosis until 1994 and even then it took many years until most doctors were willing to accept it as a viable diagnosis.

However, that was then. It has been 16 years since it was put into the DSM IV and ignorance of any part of the autism spectrum is UNACCEPTABLE! Around 1 in 100 births today will be on the autism spectrum. Our numbers are growing and these babies today will be students in school in the not to distant future. How many of these precious children will be "written off" and not be given a chance? How much human potential will be squandered because there is, in the minds of the uninformed administrators, "no hope"?

I feel as if the model in most school systems is for every student to fit into a nice tidy box. For the majority of the students, the box is a nice fit. But if there is one thing about the autism spectrum that needs to be known: all too many school systems don't like custom made boxes  because no two students on the spectrum will be alike. Each of us has his or her own challenges and each of us may need a different strategy to make it all work. There is no catch all solution, and this, I'm sure, scares the schools.

They may be scared, but that is no excuse to tell a family that nothing can be done. Look at all the marvelous things people on the spectrum have done! If you have no contact with the autism spectrum you should know the story of Temple Grandin. Her mother did not give up.  Her mother did not write her off. Temple Grandin, with her unique gifts, has single-handedly changed the world of cattle ranching and the way people perceive autism.

If you look on Wikipedia you can view the list of those who have been diagnosed (http://en.wikipedia.org/wiki/People_with_autism) or what I want you to look at is the list of historical figures that people speculate were on the spectrum (http://en.wikipedia.org/wiki/People_speculated_to_have_been_autistic).

The historical list, while it may be debated, is somewhat astounding. Imagine the change in the science, the arts, or the history of the world if just one person was written off. Consider that as history is being written everyday and history in the not so distant future will be written by those currently in the school system. Can we afford to write someone off just because they are on the autism spectrum? How much human potential will be wasted needlessly?

The need for understanding has never been more important. Stories like the one I heard yesterday should be ended by any means necessary. For goodness sakes folks it is the year 2010 and still people struggle to understand the autism spectrum? What is wrong with this picture? I don't get it!

Our numbers are increasing, our voices are getting louder, and yet families are being told that there is no hope and certain schools are telling them that, "nothing can be done." Well, things can be done and should be done. If you,  as a family, teacher, or member of the ASD community are in a school district that has an open mind towards autism please thank them. What the district is doing is excellent and should be the standard.

But from what I heard yesterday we aren't at 100% yet. Perhaps someday we will get there. Perhaps someday there won't be this stigma attached to being on the autism spectrum. It isn't the end of the world, but a person's world can become extremely limited if they are simply "written off" by their school district.


  1. Definitely one of the best articles you've written...hopefully others will decide to post it.

  2. I'm surprised and sad to hear that you heard a similar experience from several people in a relatively short time. My school district is NOTHING like that. We have an amazingly supportive and knowledgeable administration and a fantastic special education coordinator. The fact that a principal or superintendent would tell a parent that an IEP "means nothing" shocks me.

  3. I know that most school districts are not like the ones that I heard and this is great. One story though is too much and I think, over time, most school districts will be like Kate's.

  4. "We don't care if you have a medical diagnosis, it's not an educational diagnosis." - Aaron, I'm surprised that you are surprised. That's standard operating procedure...with school and with family! It's beyond maddening!

  5. @Brandon No it's not standard procedure. Medical diagnosisses are to be recognised by schools and I'm quite sure that's not only here in the Netherlands. Why do you think you need a doctor's note when you have to be excused from PE because of a medical problem? Because medical diagnosisses are to be recognised, both in psychological as in fysical diagnosisses.

  6. Bless you, Aaron, for advocating so passionately.

  7. Too many teachers and administrators don't believe in Asperger's (or ASD for that matter). They think the kids are wierd, lazy, rude, and have been raised improperly by their parents. Teachers think that students with ASD immature, have been babied, and they should conform to the school expectations. It is a battle I have fought for years.

  8. Whenever I read a post like this, this is where the two me's get nasty and argue with one another... as the OT me says one thing AND the aspie me says another thing. So please forgive me for being blunt and concrete.

    I have been trained by a wonderful occupational therapist in school based practice. If a child clearly needs services, the school should do whatever it can to provide that. HOWEVER, if the child showed that he/she doesn't need services, then the school is forced to stand firm most of the time on this. Gray areas- that's where the perceptions of being easy/hard parents come into play. Easy parents might get the benefit of the doubt in these instances.

    Now here is another thing, picking spots is very important in advocating for such children. You basically either want to the school to overwhelm you with evidence that supports their case, or raise some questions if there seem to be gray areas.

  9. The first time I suggested to somebody that my then 8 yr old had Aspergers...they said, "Are you sure she's not just extra naughty?" Yeah, pretty sure thanks.