Thoughts on new American Psychiatric Association recommendations

Amanda - posted on 02/15/2010 ( 7 moms have responded )

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I've been asked by quite a few people how I feel about the new recommendations of the American Psychiatric Association to eliminate all autism-ish diagnoses (like Asperger's and Pervasive Development Disorder) and simply call everything autism. Everyone is going to be "on the spectrum," to a greater or lesser degree, so instead of receiving an Asperger's diagnosis, a person might be described as having "less severe autism."

To be honest, I don't know how I feel about it. We have long since given up on looking for meaning in labels. There was a time when we thought the diagnosis "autism" would mean something terrible for Billy, but it doesn't. We still have a joyful, smart, funny and loving child.

And his autism is markedly different from the autism affecting other children we meet at the doctor's office or in the lobby outside speech therapy. He is highly verbal, while another child might never learn to speak. Billy has difficulty with transitions and managing his emotions sometimes; a buddy of his from therapy has never had any behavior issues. Billy has a unique set of sensory processing issues: he loves to hug people deeply but doesn't want anyone touching his head. And those issues change from week to week, as he improves certain skills, matures and develops other issues. What works on week may not work the next -- or even from one day to the next.

There do seem to be some common symptoms among people with ASD (autism spectrum disorder): difficulty with eye contact, expressive communication delays and social awkwardness, to name a few. But based on that, I should probably be called autistic too; half the population could probably fall "on the spectrum." As I've said before, if autism is a spectrum, so is "normal" and most of us could debate all day where we fall on that one.

My point is that there doesn't seem to be much point in looking for one prescription for autism. If that's their plan with this universal diagnosis, then I'd have to protest. A diagnosis of autism, in my utterly inexpert opinion, should simply be a starting point to analyzing an individual child's deficits and determining treatment for those particular symptoms.

If this new perspective makes it easier for more people to receive treatment, and to receive it earlier, I'm all for it. If bigger numbers of diagnoses mean more funding for research, again, that sounds good to me.

And if this debate means that the public is better informed about what autism is -- and what it is not -- then that's great. I can't count the number of times someone has observed Billy and said, "I would never know he's autistic." If you're expecting Rainman, you're going to be very pleasantly surprised. Rainman is about as representative of autism as a Porta Potty is of architecture.

So I'll leave the label debates to those more expert than myself. Whether the American Psychiatric Association decides to call my son's disorder autism or "Tallahassee flu," we'll still have the same amazing child and count ourselves lucky every single day.

I'm interesting to hear your thoughts ...

Amanda
Blogging for Billy at www.AmandaBroadfoot.com

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7 Comments

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Amanda - posted on 02/18/2010

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I'm so sorry to hear that happened to your friend, Vicky! How awful!

I definitely feel a lot more prepared for my next IEP meeting and I'm going to question them a lot more about why "autism" isn't marked on Billy's IEP. I certainly don't want to get to a point where he is denied services because of that.

Thanks,
Amanda
Blogging for Billy at www.AmandaBroadfoot.com

Vicky - posted on 02/18/2010

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My sons IEP is marked Autism as #1 and language 2nd. There are more services under Autism that is probably why thay don't want to mark it. When he is in High School or Jr. High i would deninately have it on the IEP just in-case the police are ever involved. This happened to a friend of mine and it was not marked and he was arrested and held foe 6 months!

Samantha - posted on 02/18/2010

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There are so many forms of Autism, they each have something that sets them aside from the other. It is wrong to classify them as 1, just more or less severe. it is like Classifing all trees as the same just one side is bigger then the next..and that is so not true , some have fruit, flowers, need differnt weather conditions etc. I think I have my point.lol. Thankyou for the post I was unaware they were working toward a change, a bad change. I don't know about everyone elase but I've had Enough CHANGE this year.

Amanda - posted on 02/17/2010

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Thanks for your feedback, everyone...I find it fascinating how different things are from one state to the next, one school district to the next, and so on. When I had Billy's IEP meeting, I noted to his teacher and therapists that his IEP still simply read "speech delayed," despite the fact that we have had an official medical diagnosis of autism for nearly a year now. They said that it makes no difference in terms of the services he receives and "that's what you want it to read," as though there is a downside to it reading autism.

I didn't make a stink about it (and maybe I should have) because he's getting everything they have to offer anyway -- OT and speech. But I wonder if there might be a difference if autism was noted on his IEP.

I want him to stay mainstreamed as long as possible (he's currently in an inclusion class with 50 percent neurotypical kids) but i can't seem to get a straight answer about what the difference is to the school district between "autism" and "speech delay."

Any of you more experienced mamas (or daddies) have any suggestions?

THanks mucho,

Amanda
Blogging for Billy at www.AmandaBroadfoot.com

Tracy - posted on 02/17/2010

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In my state (and I'm sure in many others) it would make a huge difference in terms of services offered. The services offered under an autism classification in New York are mandated and the students have more protections. My daughter (diagnosed PDD-NOS) was given a classification of "Other Health Impaired." I was told that it is a school policy and not worth arguing about. My school district refuses to recognize autism as a spectrum disorder, that way they can save money and won't have to abide by the regulations of the autism classification. I am now having to fight the school district to get appropriate services that she would have automatically gotten under the correct classification. It is true that there is a lot of variability with ASD kids and they all don't need the same types of services or the same amount...that is why IEP's are supposed to be individualized for each child. For this reason, I would absolutely support the recommendations from the APA.

Vicky - posted on 02/16/2010

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Well said!

Sheila - posted on 02/15/2010

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There was a time when I thought that a diagnosis of Aspberger was somehow "better" than ASD....that was a time when I truly didn't have a clue.



You are right. The diagnosis is a starting point....it does not change the child, or what you need to do for your child.



If this is a move for funding, if they are attempting to gather all the eggs into one basket...to centralize where the research dollars go...hopefully it will help...



But, as everyone knows, if you have met one person living with ASD, you have met one person living with ASD and what works for them might not work for someone else...such a mystery.



Different, never less!



Sheila