New definition of autism

[Tom Drinkwater]

For those of you that are reading this post that don't know, the book by which most people are diagnosed with for a multitude of disorders like autism, aspergers, adhd, by-polar disorder etc is being updated this year.

The important part of this for me as a parent of two autistic boys is the proposed new definition of autism. Currently there is a category of disorders that are under the name "Pervasive Developmental Disorder" or PDD. Under PDD you have the subcategories of Autism, Aspergers, ADHD and several other lesser known disorders. If you don't meet the specific criteria for being Autistic, Aspergers etc, you may be diagnosed as PDD-NOS or Pervasive Developmental Disorder Not Otherwise Specified.

The new definition will eliminate PDD altogether and relabel the disorder category as ASD or Autism Spectrum Disorder. As the proposed new definition stands right now people who are currenlty diagnosed as Aspergers or PDD-NOS will be without a diagnosis and may have to go through the long expensive process of being reevaluated to retain access to services and protection under the ADA.

Here is one article from the NYT on the subject:
NYT: New autism definition may exclude many - Health - Children's health - msnbc.com

Many people think the new definition is a good thing because it will effectively reduce the amount of people with autism by only giving diagnoses to the very severe cases. Some others think that it is a good thing because states can't afford to foot the bill for expensive services for developmentally disabled people anymore. Both of these arguments are not only ridiculous but dangerous.

In my case, neither of my sons recieve any speech or occupational therapy. They don't attend public school so there is no federal or state money for an IEP. We went the DIY route and homeschool and are training service dogs for the kids and it is working out amazingly well. The problem is that my youngest son (PDD-NOS) will not have a legit disability and will lose his right to have a service dog if the new definition is passed because he won't have any rights under the ADA anymore. My oldest son is a high functioning autistic and he may not even meet the criteria if it is reserved only for the most severe cases. In addtion to my kids there are thousands of adult autistics and aspies who are protected under the ADA for reasonable accomodations at work and housing. This new definition could be the ruin of literally tens of thousands of people.

I'd love to hear what the community here thinks about the topic.

[Electric Wizard]

It's a shame in cases like yours where people who really need ADA protections will be denied them. However, I don't find it that surprising, given how diagnoses of adhd and asperger's have grown exponentially. It seems like within the past five years anyone that's the slightest bit awkward is labeled as having asperger's. Regardless of whether it's justified, this redefinition seems to be a clear response to that.

[Michael T]

Gotta love America. Thats just crazy.

Has it passed/changed yet. Is there anything we can do to fight the change?

[techjsteele]

As a parent to a son with Autism and a daughter with ADHD, I will be watching this issue with great interest. We already have a hard time getting the services our children require.

[McKay]

Originally Posted by Electric Wizard

It's a shame in cases like yours where people who really need ADA protections will be denied them. However, I don't find it that surprising, given how diagnoses of adhd and asperger's have grown exponentially. It seems like within the past five years anyone that's the slightest bit awkward is labeled as having asperger's. Regardless of whether it's justified, this redefinition seems to be a clear response to that.

Why do his kids need them exactly if they're 'high functioning'?

The cause of the exponential growth in adhd/dyslexia/etc is societal, a combination of overzealous doctors and pushy parents looking for convenient diagnoses for their children. I could have very easily been classed as a high functioning autistic. They wanted to diagnose my brother with dyslexia. We are both fine and everybody saved money, time and stress when our evaluations were dismissed by our parents.

Now they are both medical professionals so they were qualified to make that kind of judgement. They were trained wheras the average layman isn't, buying into (or seeking) these kinds of diagnoses when they simply overcomplicate everything. Simply knowing a few things about the way children develop allows parents to approach things differently. To use my brother as an anecdotal example, he was taught drums to help his spelling. Sound ridiculous? It isn't if you know anything about neuroplasticity. It worked.

His dyslexic tendencies disappeared, what was left of them by that point at least. Most people who are told they are autistic or dyslexic learn to live with the 'condition' like it's some kind of chronic downer that will haunt and prohibit them for their whole life. It is presented an excuse for subpar performance rather than approaching it as a challenge to overcome.

In short, overzealous diagnosis ultimately sets bars low for those afflicted by it. This rant is somewhat of a tangent but it might give people a look at this from another angle. This move is exactly what is needed and kids that aren't severe cases should be encouraged to feel normal and capable rather than burdened with dubiously applicable or relevant disabilities.

[Jakke]

DON'T VACCINATE YOUR CHILDREN, VACCINE GIVE AUTISM!!!!


No, seriously, autism has sadly been a a wide blanket diagnosis, and many children has been mis-diagnosed, they were maybe just a bit "weird", but are still diagnosed as autistic. I'm sorry for your kids if they loose any benefits, they obviously have problems, and then you shall receive help. It feels like the guidelines are too blunt, they try to correct everything in a fell swoop, and people fall between.


I had an autistic kid in my highschool class, he had quite severe asperger, and should maybe have been in a special needs class. Sadly, he was not. I remember my highshool years as bothersome because of him, not his fault of course, but the people at the county office...

[Electric Wizard]

Originally Posted by McKay

Why do his kids need them exactly if they're 'high functioning'?

His words, not mine.

I agree with what you're saying to the effect that these conditions are overly diagnosed and that treatment needs to be approached in a different way. However, that burden should be on parents and caretakers. I just don't think taking away ADA protections is the right way to facilitate that change.

There is an element of pushy parents and doctors to the growth in these conditions, for sure. I remember when I was a young kid a bunch of my friends were tested for ADD. One of them was even taken to multiple doctors by his mom until she found one that would diagnose him. This is certainly a problem. However, I still think it's the responsible thing for taxpayers to foot the bill for people with these types of disabilities. It wasn't long ago that these people were tucked away in asylums and more or less neglected.

Unfortunately it seems that our only choices at the moment are to help everyone, including those who might not really need it, or to decide to only help those who do really need it, which is where we run into the current debate of how that's determined.

[Explorer]

From the story, it sounds like a lot of the spectrum disorders are getting folded into the broader spectrum definition.

I'll be following this to see where it goes.

[Waelstrum]

Originally Posted by Tom Drinkwater

Many people think the new definition is a good thing because it will effectively reduce the amount of people with autism by only giving diagnoses to the very severe cases.

This sounds like a comedy sketch in which the Premier of Tasmania reduced the crime rate by legalising all crimes.

I'm no expert, but if there is a problem with over diagnosis, then wouldn't the answer be to have more specific definitions, rather than more general ones?

[Stealthdjentstic]

Originally Posted by Electric Wizard

It's a shame in cases like yours where people who really need ADA protections will be denied them. However, I don't find it that surprising, given how diagnoses of adhd and asperger's have grown exponentially. It seems like within the past five years anyone that's the slightest bit awkward is labeled as having asperger's. Regardless of whether it's justified, this redefinition seems to be a clear response to that.

Apparently while diagnoses has grown exponentially, the actually rate of autism and other disorders in the general population has stayed the same. There was an article on that in the paper the other day. Kind of interesting I guess...

[Explorer]

I'm curious about the reasons given for changing the definition as well: too many can be classified as autistic or related disorders. WTF? It's not the job of the book to decide how many have an illness, but if there is a disorder.

If the problem is that doctors are falsely diagnosing someone, that's one issue.

If the problem is that there isn't enough money for services for a particular disorder, that's another issue.

Neither of those require science to decide if something makes financial sense. That's the job of applied research, not pure science.

[Tom Drinkwater]

Yeah, it's definitely going to be interesting to see where this goes.

Why do his kids need them exactly if they're 'high functioning'?

That's like me asking you why your brother needed to play drums if he was dyslexic. As parents you do what it takes to ensure your kids are successful even if other people don't understand it.

High functioning doesn't mean 'not in the spectrum'. Many high functioning people like my sons started off in a far more severe state. The underlying causes of the behaviors don't ever go away, coping skills are learned and life goes on. In the case of my sons, life goes on in a much more successful manner when they use their service dogs.

Without getting needlessly specific the dogs assist my sons with transitioning between environments, blocking self injurious behaviors and reducing self stimulatory and repetitive behaviors. Basically the dogs help the kids function like kids so they can grow up to be productive citizens as adults.

[Stealthdjentstic]

Great analogy, its like taking medicine to help alleviate problems with a chronic condition

[Fiction]

Originally Posted by McKay

Why do his kids need them exactly if they're 'high functioning'?

Before throwing out that, it's probably smarter to ask Tom to define 'high functioning'. All you got were 2 words, you can't evaluate whether his son has autism or not from that.

[McKay]

Originally Posted by Tom Drinkwater

Yeah, it's definitely going to be interesting to see where this goes.



That's like me asking you why your brother needed to play drums if he was dyslexic. As parents you do what it takes to ensure your kids are successful even if other people don't understand it.

High functioning doesn't mean 'not in the spectrum'. Many high functioning people like my sons started off in a far more severe state. The underlying causes of the behaviors don't ever go away, coping skills are learned and life goes on. In the case of my sons, life goes on in a much more successful manner when they use their service dogs.

Without getting needlessly specific the dogs assist my sons with transitioning between environments, blocking self injurious behaviors and reducing self stimulatory and repetitive behaviors. Basically the dogs help the kids function like kids so they can grow up to be productive citizens as adults.

The point was twofold:

1. He wasn't dyslexic enough, such a diagnosis would have been incorrect and would have skewed the way he viewed his life and the way he was treated by others. The culture of dyslexia would have hampered him more than benefited him. In other words the psychological impact of a diagnosis of dyslexia would have outweighed the benefits of dedicated care, when considering the level and nature of his dyslexic tendencies. This new definition of autism is most likely being introduced to avoid misdiagnosis like this.

2. These things are not always chronic conditions. Understanding neuroplasticity allows simple things to permanently change the way the brain functions. This has a massive impact on the attitude towards these conditions. For example, had my parents not known about neuroplasticity and the effects learning certain instruments have on the way the brain works and accepted a diagnosis of dyslexia, my brother would still be considered dyslexic and would probably still exhibit some dyslexic tendencies.


Autism and dyslexia are known as spectrums rather than specific disorders and this is an important distinction. If someone if high funcitoning, does their place on the spectrum really qualify as a disability? Especially one deserving taxpayer's money? What is the difference between someone with slight dyslexic tendencies and a slow reader when it comes to treating them like they have a disability? It's a label that can be very counterproductive.

If your kids absolutely need this help, then great, the system is working as intended. The problem and point is that when it comes to disabilities with a gradient there are a myriad host of issues that need to be addressed such as our perception of them and the psychological effects of diagnosis and the perception of how they should be managed and treated, if not the methods used themselves.

[Tom Drinkwater]

I know lot's of people would be mortified if their kid was diagnosed with a developmental disability. I am not one of those people. I also know adults in the spectrum, both diagnosed and not. The social stigma that is attached to being labeled can be overcome by engaging the community, not hiding from it.

We work hard in our community to inform people about autism and the autism service dogs. We get approached so often that my wife has printed out handouts with links and helpful info. Overall, our community has a very positive attitude towards what we do. We've found that as people learn more their attitudes typically change from curious to interested and then supportive. How's that for neuroplasticity? lol. With a number like 1% of people being in the spectrum I don't think my kids are going to have a hard time fitting in.

I also think that the ability for a state or federal government to pay for services should have no bearing on the diagnosis of autism. If someone goes undiagnosed it doesn't make that person any less autistic.

[Waelstrum]

Originally Posted by Tom Drinkwater

I also know adults in the spectrum, both diagnosed and not.

How do you know they're on the spectrum if they're undiagnosed? (Not meaning to seem snarky, just curious.)

[Tom Drinkwater]

There is a ton of literature out there about the autism spectrum nowadays.

In the case of an old army and firefighter friend of mine he had two kids in the autism spectrum and after reading everything he could get his hands on he realized that he was most likely either ADHD or Aspergers. He was diagnosed as ADHD in his 30's and once on the proper medication learned to self regulate his behaviors. I don't know if he is still on medication. I think he is more Aspergers based on the DSM-IV definition and the stereotypical traits he presents but I'm not a doctor. Based on the fact that he meets the criteria he could be considered an undiagnosed Aspy. Amung many professionals working in the field of autism therapy and research it is considered common to have an Aspy misdiagnosed as having ADHD. Luckily my kids were diagnosed by a team that specializes in developmental disability screening. The team consists of two a Developmenal Pediatrician, a Physcologist, a speech pathologist, an occupational therapist and a social worker. They don't hand out labels either. I asked the pediatrician if he'd ever diagnosed a kid as a spoiled brat he replied no, but he'd been tempted.

My wife was diagnosed as LD or Learning Disabled at 7. Based on the current DSM-IV she would be categorized as PDD-NOS like our youngest son. This has been confirmed by both a behaviorist and physcologist working in the field of autism research. Her father, who also exhibited many stereotypical aspergers traits taught her about self regulation. Unlike people like Bill Gates, who rocks back and forth during board meetings, my wife schedules time for rocking in a dark room for an hour a day to help calm her overactive nervous system. We also have recently switched to decaf!! That helps alot.

Aside from those two individuals I've had several friends tell me that they read books like Look Me In The Eye by John Robison and realized that they are aspies.

Many of the parents I've met that have kids in the spectrum display all or most of traits of aspergers. It's probably not a popular view point but my wife and I think that the increase in "autistic" traits are just a natural adaptation to our new way of life. Modern Human V2.0 if you will. Anyone with a computer can tell you that not every update comes without it's glitches. These glitches can come in the form of seizures, hyper sensitivities to input from the environment etc.

[Waelstrum]

It's interesting that you say that this spectrum might be on the increase for evolutionary reasons. It's my understanding that people on the spectrum are better at processing information (leading to the stereotype of being a nerd) which in hunter/gatherer times wasn't so useful. However, in the information age, it is beneficial to clever. I vaguely remember reading/hearing that many of the top people in their relative fields are on the spectrum, which may lead to more successful breading, and therefore an increase in autism (if it's hereditary). (Keep in mind I'm talking almost exclusively through my arse.)

[Jakke]

I am sceptical to it being an evolutionary trait.
Firstly, evolution is not global over a species, the increase in diagnosed autism is present in both the US, Europe, and Asia. They can be considered three populations, and individuals usually breed within their population, limiting evolutionary traits to said population.

Secondly, I have a hard time seeing that autism would give you more offspring. Are people with autsim having more children? If not, they are not really more succesful in this environment, and thus there is no natural selection.

Third, how would an autistic species survive? If autism turns out to be a winnig trait, and speciation occurs, that is, the new species can no longer breed fertile with "old" humans, how is an autistic species going to survive? Old humans have no longer no incentive to help the autists, since they can no longer interbreed, and many with autism cannot function on their own.

Fourth, the rise is far too quick with regards to how long a generation is for humans. We suffer no environmental stress that would increase the evolutionary pace, and even then it would take many, many generations for even a small trait to turn up, let alone a different brain structure.

I would lean towards that the explanation for the rise is a wide definitions of what autism is, and sometimes over-zelous doctors putting diagnoses where they may not be needed.

[Waelstrum]

Yeah, I was really just saying it's an interesting idea, although there doesn't need to be speciation for a trait to take over, like immunity to certain diseases for example. Also, AFAIK it hasn't been fully established that it's even a hereditary trait. Either way this is getting off topic.

[Jakke]

I was not jumping on you, I was just skeptic of the general idea, and no, speciation is no requirement for a trait do dominate. But as new traits begin to dominate, the genetic makeup will change, thus resulting in speciation.

Inb4 EVOLUTION IS JUST A THEORY!!!!!

[SirMyghin]

Originally Posted by Jakke

I would lean towards that the explanation for the rise is a wide definitions of what autism is, and sometimes over-zelous doctors putting diagnoses where they may not be needed.

This is my thoughts on the matter too. Heck I was once attempted to be diagnosed as ADHD myself. One doctor against a few didn't fly so well though.

I think a new definition could indeed be beneficial, but that is from a societal perspective. I am tired of seeing the standard brought down to people with disabilities, in the name of 'fairness' instead of having a standard, period. That is the whole point of a standard. I saw this a lot in university, some students would get time and a half on tests, readers, etc. They are not achieving the standard by any means. This had lead to interviewers having to resort to tricks to feel out potential employees, as you cannot ask if the person has a disability. In the end the employer will eventually find out, and if you require extra time for everything you complete, I don't see you holding onto a job. Then you get all the folks who are attempting to fake disabilities to ride these trains, and you are in dire need of some reformation.

I realize the prime concern of this thread is monetary/aid related, however I am looking at this from the societal perspective. Equal treatment in production, requires equal performance. I am not a fan of cudos for trying if people don't measure up one way or another. We live off our merits.

[fwd0120]

Originally Posted by Jakke

Inb4 EVOLUTION IS JUST A THEORY!!!!!

Everything is just a theory. I am an existentialist, your argument is invalid.

[Jakke]

Originally Posted by fwd0120

Everything is just a theory. I am an existentialist, your argument is invalid.

You may not, but I do believe in facts, and evolution is in fact a fact. So, invalid for you, but not for most, since most are not existentialists



Hah! Who's now?