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January 31, 2012

How to stop an epidemic in one easy step

By Valle Dwight, LD Contributing Writer

 
The autism community has been buzzing in the past week with the news that the American Psychiatric Association’s new definition of autism would eliminate the categories of Asperger syndrome and “pervasive developmental disorder, not otherwise specified,” (PDD-NOS) in the latest Diagnostic and Statistical Manual of Mental Disorders (DSM), due out in 2013.
 
When the APA first proposed tightening up the clinical definition of the autism diagnosis, even groups that represent people with Asperger syndrome (considered a high-functioning form of the disorder) were supportive.
“Seeing as no discernible line in the sand could be drawn that truly separated Asperger Syndrome from autism (though the clinical world tried), the merger made theoretical sense,” wrote Michael John Carley, executive director of The Global and Regional Asperger Syndrome Partnership (GRASP) in an email to supporters last week.
“Furthermore, any spectrum diagnosis, in essence, served us well enough as it placed our behavioral differences within the context of wiring, and not through the judgmental lens of interpreted character deficits.” In other words, the diagnosis affirms that autism is a neuroligical issue, not a case of bad or weird behavior.
 
But a new study has made it clear that this is not a change in name only. According to the study, some 75 percent of people with Asperger syndrome and 85 percent of those with pervasive development disorder would no longer be considered to have autism under the new definition.
 
Presto! With just a change in language the autism epidemic is over.
Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the recent analysis put it this way:  “We would nip it in the bud.”
 
And when you end an epidemic certain government institutions save a whole lot of money. Kids who no longer qualify for a diagnosis will have a much harder time getting services they need to learn and function in the community.
 
Kids who currently have the diagnosis of AS and PDD have it because they have struggled to the point where their parents had them tested. These aren’t just kids who are a “little different.” What parent actually wants to go through the hell that is special education and autism? You’d think it was some kind of country club that people are dying to get into.
 
Believe me, if taking away the diagnosis actually took away the issues, parents would be the first ones in line asking for the change.
 
This is potentially a dangerous change that will leave thousands and thousands of kids to flounder – socially, academically and emotionally. All with a few keystrokes. That is scary.

Comments

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Sounds like "no net loss of wetlands" under the Bush administration. Thanks for writing about this!

Yes - it is scarry. It is hard enough getting services as things are now even with a pure Autism diagnosis. For heavens sake they should not make any changes that make things more difficult. We need to make things easier and provide more funding and educational options. It is critically important.

Shame on these people who are trying to save a buck for the government! These children need all the resources they can get! They don't get to pick how their brain develops or the path they were given in life. It's our job to protect and do all that we can for them. Our children need to come 1st, ALWAYS!

As the parent and family, of a child with AS, we know that although some of the signs of Autism are difficult to see, it is a big issue. Our child struggles with social and school issues daily. They receive NO services because they are considered adaptive. All those directly involved (teachers, medical professionals and family) agree they would benefit from some services if approved by the district. With social and behavioral issues addressed; the academics naturally improve. Instead the child with AS and their family is put under increased pressure and left to struggle on their own. In conclusion since no services are provided it will make little to no difference to our family. In the long run it will make a big difference to society as there will be adults who will not be able to function within society and need for society to care and pay for them.

Maybe they need to take a look at their "cure" for an epidemic! My child will still qualify for the services she gets (we pay for the one outside of school with insurance covering a little bit of it) but just changing how you diagnose doesn't change a thing for those children it will only make it more expensive and harder on the children as well as the families as they get older and more problems surface.
Honestly I think we need to redo how these people earned their degrees!!!!!!!

Sound like another cut where they take from others where they keep more in their own pockets. Pure feed and they should be ashamed. If it were affecting them personally I am sure they would have a different outlook on this issue.

As the mom of a 15year old AS female with a much needed IEP and many accommodations to be mainstreamed because she is too bright to be in the autism classroom, let me just say this proposed change is crazy. Our high school has been excellent in helping but it is a daily struggle for our whole family. It took years to get a correct diagnosis and now in the deleting of a few words in the DSM where will we end up. Bullying will surely be an issue without accommodations to prevent it. Depression will also be an issue again. How many AS kids will commit suicide because of the repercussions of this change just to get rid of an epidemic and save some money that will be funneled into some program like studying the effects of some Sierra group project that will not save one life. I know first hand about attempts, cutting, depression...I'm sure if it was the psych docs kid things would not change. My dtr. Is not quirky...she has a neurological disorder. This has to be stopped!!!

If I understand this correctly, this will eliminate a significant part of the autism spectrum - which could do a serious disservice to children. As the parent of a 19 year-old with autism, getting services for him when he was in the public school system was difficult - but acheived when I went on a letter writing campaign and threatened to sue our local Board of Education for not following state education law for special education students. Now we are in the second year of trying to get social security for him with the current definition of autism. My heart go out to the parents who will have children diagnosed with AS after this redefined diagnosis is published.

Why don't these so called "experts" try living the day to day with a child with Aspergers? Really??? They think they can just redefine this so it goes away? It is just another way for insurance companies to get out of paying for therapies. These therapies work! My grandson has come so far because of behavioral, occupational and speech therapies.It has helped tremendously! Think about the big picture. Our role as parents and grandparents is to raise our kids to become happy, responisible adults that can work, have families,socialize and have friends. If they do not get the help they need then don't you think they will more than likely end up on public assistance? Or worse homeless and on the street. Wake up! Who will take care of these kids when the parents can no longer take care of them? The time to help them is NOW. These idiots need to get there heads out of the sand!

Again the moguls have their way. Bottom line is always profit, or lack of it.
Have been trying to get services for my 16 year old AS son for three years: teachers are empathetic, but what can they really do without support services?
In a special school my son grew and flourished from grades 2-6, even acting on stage. In public school the past three years (one was a parent-forced repeat---school district wanted to pass him on though he failed every subject because he passed and was commended on yearly assessments---hello???Message here?)he has
steadily regressed in overcrowded classrooms with teachers who think he's 'just lazy'. Pressures are enormous, making him more and more introverted.
Just as we are making some impression on administration, we stand to take many steps backwards and leave him to fend for himself.

It is infuriating. I have a child who meets 8 of 12 but currently, because we've worked on it, we'll have difficulty with the one in C, it was clear when she was 2 but not now that she's 9 because, isn't that what therapy is supposed to aid?!?
The sadness is this will sharply impact the kids who could really do something, go on to jobs/college with some early supports - they won't get them now or supports will be pulled once they stop the repetitive behaviors!
So what would they say is wrong with a child who now has only 8 in A & B?!!?! You can't say there's nothing wrong with such a child and it is, I think criminal to suggest that. I see a Supreme Court challenge to this DSM.

Its something how there is ALWAYS an endless supply of help to those that BLATANTLY live off the government, with Food Stamps, free medical cause of no job, or no motivation to do ANYTHING with their lives! And yet, they want to cut funding for special needs kids! Pisses me off to no end! ;-(

I may be the only one who is in favor of this change. Too many teachers are willing to label children as ADD when they are inattentive and over energetic. This accusation happened to my son. We did discover he has learning differences and are working to help him. However, it's not right for a teacher to think popping a pill into a child is the secret to classroom discipline.

To the comment above: we are not talking about ADD and popping pills in our childrens mouths. We are talking about autism and taking away the sevices our children need in order to have the best possible future. I am not downgrading ADD by any means but you comment is way off track on what we are fighting for. You obviously do not have a child with wutism and have not business commenting. You just sound ignorant!

There needs to be more developmental services and support for ALL children. Why do we have to get a diagnosis in order to provide the kind of education and support that our children need? The kind of education I mean is one that provides differentiated, individualized instruction, social and emotional learning that groups like CASEL.org can bring to a school.

I really wish I hadn’t seen this as I really want one now!

I have been fighting for services since my son was diagnosed with AS with ADHD last February. Every time I feel good and think that we are finally getting somewhere.... wham! THERE'S THE WALL!!! If the government needs to save a buck or two then maybe they need to rethink how they manage the current system! For example....why does my son need to have a full evaluation everytime I take him somewhere for services? I think being diagnosed once was quite enough considering how expensive the evaluations are. We all need to make some noise cause ultimately its our hard earned tax dollars paying these idiots salaries!!!!

There are many valid points here from parents who are educated advocates for their children. Please know and believe that m most educators today do not believe popping a pill, etc., is an effective response to learning differences, especially those who are also parents of similarly affected children. Most teachers today watch a family member or extended family member or neighbor struggle with autism spectrum disorders and other learning problems. As the economy has declined under the current and past federal and state administrations' response to the greed caused crises in the automobile, mortgage and banking industries, services to the least able to speak for themselves, our children, has declined. Big bucks and over paid executives who exploit and encourage exploitation across basic human needs, never pay for their crimes (does "too big to fail" ring any bells??

We must continue as educators, parents,grandparents, taxpayers and members of society to advocate, protest, speak out and demand a fair and equal playing ground for all children.

My son needs help

mortgage and banking industries, services to the least able to speak for themselves, our children, has declined. Big bucks and over paid executives who exploit and encourage exploitation across basic human needs, never pay for their crimes (does "too big to fail" ring any bells??

I have been fighting for services since my son was diagnosed with AS with ADHD last February. Every time I feel good and think that we are finally getting somewhere.... wham! THERE'S THE WALL!!! If the government needs to save a buck or two then maybe they need to rethink how they manage the current system! For example....why does my son need to have a full evaluation everytime I take him somewhere for services? I think being diagnosed once was quite enough considering how expensive the evaluations are. We all need to make some noise cause ultimately its our hard earned tax dollars paying these idiots salaries!!!!

I have been fighting for services since my son was diagnosed with AS with ADHD last February. Every time I feel good and think that we are finally getting somewhere.... wham! THERE'S THE WALL!!! If the government needs to save a buck or two then maybe they need to rethink how they manage the current system! For example....why does my son need to have a full evaluation everytime I take him somewhere for services? I think being diagnosed once was quite enough considering how expensive the evaluations are. We all need to make some noise cause ultimately its our hard earned tax dollars paying these idiots salaries!!

I have been fighting for services since my son was diagnosed with AS with ADHD last February. Every time I feel good and think that we are finally getting somewhere.... wham! THERE'S THE WALL!!! If the government needs to save a buck or two then maybe they need to rethink how they manage the current system! For example....why does my son need to have a full evaluation everytime I take him somewhere for services? I think being diagnosed once was quite enough considering how expensive the evaluations are. We all need to make some noise cause ultimately its our hard earned tax dollars paying these idiots salaries!!

I have been fighting for services since my son was diagnosed with AS with ADHD last February. Every time I feel good and think that we are finally getting somewhere.... wham! THERE'S THE WALL!!! If the government needs to save a buck or two then maybe they need to rethink how they manage the current system! For example....why does my son need to have a full evaluation everytime I take him somewhere for services? I think being diagnosed once was quite enough considering how expensive the evaluations are. We all need to make some noise cause ultimately its our hard earned tax dollars paying these idiots salaries!!

We must continue as educators, parents,grandparents, taxpayers and members of society to advocate, protest, speak out and demand a fair and equal playing ground for all children.

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