Why the definition of autism matters
January 24th, 2012
03:26 PM ET

Why the definition of autism matters

Editor's note: Dr. Charles Raison, CNNhealth's mental health expert, is an associate professor of psychiatry at the University of Arizona in Tucson.

The American Psychiatric Association is in the midst of redesigning a document often called the Bible of Psychiatry. It's known more officially as the Diagnostic and Statistical Manual of Mental Disorders, or DSM for short.

For practical purposes, including insurance reimbursement, the DSM determines what does and does not qualify as a psychiatric illness in the United States.  Because of this, changes to the document can lead to profound effects on patients’ lives.  Changing criteria can dictate who and who cannot be considered to have a mental illness worthy of treatment... and insurance coverage.

Nowhere have proposed changes to the upcoming edition of the DSM generated more angst, or media coverage, than in the area of autistic disorders.

Anyone who has a family member with severe autism, or has known someone with the condition, might be surprised by this.  Of all brain conditions for which we don’t know the cause, none are more obvious than autism in terms of symptoms or impairment.

Autism strikes right where it hurts most, and that is the ability to understand the emotions and behaviors of other people.  In addition to severe impairments in social understanding and behavior, people with autism also typically engage in pointless repetitive behaviors and have obsessive, narrow interests, often centering around technology.

Occasionally autistic people demonstrate skills, as seen in the movie "Rainman."  One famous autistic patient can tell you the day of the week of any day in history.  I had a patient years ago who had exactly memorized all bus routes schedules for the greater Los Angeles area using a method he inexplicably called the “liver system."  He could - and did whenever prompted - recite exact times and stops over hundreds of routes for hours on end.

So the question remains: how could changes in diagnostic criteria change who does and doesn’t have such an obvious disease?

To answer this question, let’s do a thought experiment.  Imagine you are at the doctor’s office receiving news of your latest medical testing.  Would you rather be told that you had a large breast lump that was benign or a very small one that was cancer?  Or consider this: You go to the ER with chest pain.  Would you be very comforted if the doctor told you that you’d only had a small heart attack?

What these examples make clear is that some medical conditions are best thought of as either being present or absent.  Either you have a disease or you don’t. Now consider this:

We all know that high blood pressure is a silent killer, and that many lives have been saved by the development of safe and effective treatments. Setting aside what the number exactly mean, most of us probably also know that the upper range of normal for blood pressure is 140/90.  Suppose your doctor takes your blood pressure and it is 141/91. Knowing that this is high, she asks you to relax and then takes it again five minutes later.  This time it is 139/89. Would any of us say that you had a disease based on the first reading, but fortunately were perfectly normal based on the second?

All psychiatric diseases are like blood pressure.  They are on a continuum without gaps.  If one administered questions to identify any condition and rate its severity in a large enough group of people, one would find someone occupying every value from zero to the maximum score.

The problem in psychiatry is that our entire diagnostic system is based on the idea that mental illnesses are like cancer and not like blood pressure.  The DSM provides minimum criteria for each disorder, which means that no matter how close you are to having any given condition, if you fall below the line you technically don’t have it.

I suspect you can see the problem immediately.  If nature does not provide clear guidelines for where normal stops and mental illness begins, how does the line get drawn?  The quick answer is that it gets drawn in much the same way the voter redistricting lines get drawn: based on some data, a lot of fighting, and finally some not entirely satisfactory compromise.

So back to autism.  Like all other mental disorders, it runs along a spectrum from people who most of us would have called nerdy when I was a kid to people who spend their lives unable to speak, rocking back and forth for hours on end.  We all agree that the silent, rocking folk are ill and need care.  But where does extreme nerdiness and social awkwardness give way to Asperger’s syndrome?  When is someone autistic enough to deserve the label?

This is the rub.  As with all spectrum conditions, there are far more people with mild autism than with its more severe forms.  Again think of blood pressure.  Lots of us run 150/92 - not many of us run at 200/110 (and those of us who do often don’t live to tell about it).

What the new DSM proposes to do is make it harder to meet criteria for autism, so that probably the majority of people who fall on the mild end of what people often call simply “the spectrum” will now be declared non-autistic.

Proponents of this move argue that much of the autism epidemic that has been observed in the last several decades may result at least in part from the fact that less and less severely affected people are being diagnosed.  Making the criteria stricter will reverse this trend.  It will also reduce the risk of stigmatizing people who in former times might have been viewed as eccentric, but non-diseased.

Opponents of the changes argue that many young people have been helped by receiving the diagnosis and that this help will vanish if they are no longer considered to have a “real” and “billable” condition.

What is the answer to this dilemma? Like all real problems in the world it falls along a spectrum.

The opinions expressed in this post are solely those of Charles Raison.

soundoff (300 Responses)
  1. hummmm

    Hi everyone. I was just wondering what your thoughts would be along the lines of preschool and education. Are you in favor of your child being mixed in with "average" students and even gifted students? Or you would you rather that those across the spectrum are grouped in classes with similar students? Would you want them to be in a different area completely as to limit interactions with other students? Ofter "interactions" with other students just lead to bullying and babying the child on the spectrum in my experience. I am just asking your thoughts, please don't be mad :/

    January 24, 2012 at 18:12 | Report abuse | Reply
    • Mom of three Aspies

      I have three Aspie teens. All three have educational IEPs and various levels of services. When they were younger, they were blended part – time: special ed activities for part of their time and then integrated with "normies" to work on their social skills and to relate to their peers. For Aspies, I think this is a model that should be followed for one reason: when they leave home – and they will – they will need to be able to function in a society that will not give them assistance. My 17 year old Aspie daughter is considered Honors/Gifted and has her own homework curriculum she follows – including college courses. My oldest Aspie son also has his curriculum tailored to his strengths. My youngest son, we're still working on as he was just diagnosed but I don't anticipate any differences. Unfortunately, this arrangement is not the same from state to state. I'm in a state that works hard on special education and in a district that prides itself on tailoring to the needs of the student, autistic or not. Of course, if the student is incapable of communicating or has issues integrating with their peers, they need to be in a segregated setting for at least some of their day.

      January 24, 2012 at 18:33 | Report abuse |
    • Another Steve

      The problem is that the correlation between autism and actual low intelligence (as opposed to not being able to learn in a standard classroom environment) is weak at best. If I were 40 years younger, I would be classified as both "gifted" and "learning disabled" under local school district criteria, and I'm sure I'm not the only one. Which class do you put these students in?

      January 24, 2012 at 18:39 | Report abuse |
    • Mom of three Aspies

      Those with LD and Gifted, in my state at least, would be in special ed. However, the push is to mainstream with paraprofessional support that is in the classroom in the event of a problem. Teachers, through the IEP, are informed of any special things that must be done (no blank word problem type answers – lines need to be included as it can be a trigger, for example. School assignments are the same though those in special ed due to LD may get somewhat extended deadlines for due dates but not in every case. The IEP is tailored to the individual and is based on both Federal Law and what the school district can provide.

      January 24, 2012 at 18:45 | Report abuse |
    • Frances

      During preschool years I think the special ed kids do well in a dedicated special education class: Not to keep them away from regular kids, but to let them be with other special kids. Those other special kids in the class are gems and there is an unspoken understanding that each person there is doing the best they can with whatever disability they have: Kids get to form friendships on "their own terms" without worring about what is supposed to be normal. As an added bonus parents of these kids get the opportunity to network and realize that they are not alone in their daily struggles. It's like a build in support group. I am a parent of one special ed teen and one gifted teen.

      January 24, 2012 at 18:52 | Report abuse |
    • Wilbur

      I think that all children should be put in classes based on their individual strengths and weaknesses. For example, students with lower IQs should be put into classes with other students with similar IQ tests results and the same with middle IQ and high IQ students. This one size fits all system is not working. We are letting some students seriously fall behind while other students may be bored in school and undervalue their education.

      January 24, 2012 at 18:56 | Report abuse |
    • Burbank

      I think classes according to a student's level would be the best in theory, but of course it could also lead to bullying or feeling stigmatized no matter how you try to prevent it. Kids can be vicious monsters, especially at middle school age, and any excuse whatsoever to bully each other is a good one. The smart or dumb kids could be bullied by the average ones, or the average by the smart, or the slow ones by the other 2 groups and so on. Or maybe in a particular school the dumb ones are the cool ones. You never know what they will pick out to pick on.

      January 24, 2012 at 19:36 | Report abuse |
    • Susan, Special-Education Attorney, California

      Maybe the insurance companies are behind this so they don't have to pay for therapies unless there is a formal diagnosis, so if the definition is changed, they do not have to cover therapy for so many insured people.

      Also, why is this energy not being spent in discovering the CAUSE of the explosion in Autism?

      January 25, 2012 at 08:21 | Report abuse |
    • Lisa

      I work as the program coordinator of a preschool for children with special needs and for typically developing children. My typical daughter is in one of the classes and I also have an older son who is autistic. My older son was placed in a preschool environment that was self-contained...all the students in his class had special needs. It was very difficult for the teachers to meet his needs, even with lower class sizes, because all of the students had special needs. He "learned" bad habits from other students and didn't really have a role model to follow. I also taught 3rd grade for a class specifically for "at-risk" students. This was the worst year of my career, specifically for the reasons listed above.

      My daughter loves being at her preschool. All of the children treat each other with respect, regardless of whether they have a special need or not. The children with special needs make so much progress just by watching how their typically developing peers do normal routine things. I wouldn't trade it for the world.

      January 25, 2012 at 11:23 | Report abuse |
  2. PaulinTexas

    As the father of an Aspie, I can see the problem just assigning "statisical" criteria to children. I had to educate his teachers as to what he could and couldn't do while he was educating me. Every child is unique and shouldn't be placed in "boxes" as some labels do.
    My son is now in college, has a 3.5gpa and has a girlfriend.
    Working with autism should be an educational issue: teachers get educated as well as parents should be getting the support and training to deal with their child. The teachers can't do it alone; the doctors can't just perscribe drugs and the parents can't do it without research.
    Will the new criteria expeact the child to "fix" himself? It's not going to happen. Without the support of the medical community, teachers, parents and children will have a much more difficult time.

    January 24, 2012 at 18:14 | Report abuse | Reply
    • megan

      love your response. As Temple Grandin says, if she was given the choice not to have autism, she would decline, because it is part of her. Autism can be tragic, but also can give gifts in allowing people to see the world in different ways. The more we learn about the disease, the more we can work with people with Autism to enhance understanding both ways. "Different; not less"

      January 24, 2012 at 18:22 | Report abuse |
    • Mom in PA

      I could not have said it any better. My son is considered high functioning and it's hard for people to realize that without all of the therapy, talking to other parents, educating myself, medication, and being a very hands on parent, that my son probably wouldn't be as high functioning as he is. The whole process is a learning experience and it changes very often. I'm worried that with the new criteria, my son will lose the very things that have made him as high functioning as he is. It's very scary. My son has the potential to go to college and do very well in life because of the path that he is on now. Again, scary to think that a new criteria might change his course.

      January 24, 2012 at 18:34 | Report abuse |
    • PS

      I totally agree. I got diagnosed with Asperger's in my 30s and am on the mild end, but you'd better believe it's enough to affect my functioning. I fear I would be one of those who'd get kicked out from under the umbrella because I have enough coping skills and have gone through a lot of therapy... but that doesn't mean I'm not still autistic! My Asperger's diagnosis was one of the best things that could have happened to me because I finally got the treatment I needed, and I've been able to get accommodations I otherwise wouldn't have received. I am only hoping with this "revision" that my psychologist is willing to re-issue the diagnosis under the new criteria so I can continue to get what I need. It was hard enough finding this path when I started on it 10 years ago.

      January 24, 2012 at 19:32 | Report abuse |
    • sfabl

      Exactly – I am so tired of hearing people claim that Asperger's is just making "quirky" into a disorder. Yes, there are plenty of quirky folks out there and they do just fine and of course there is no reason to "diagnose" them with anything. We are talking about people who are more than just quirky: children and adults who can't keep their head above water because of their struggles. What people don't realize is the amount of work, self-education, environmental modification, money and resources it takes to help that person who is more than just "quirky" to be functional, happy, and productive. It doesn't just happen on its own.

      January 24, 2012 at 19:52 | Report abuse |
    • Another Steve

      A lot of people seem concerned that the redefinition of ASD will lead to a loss of much-needed support. Under the proposed definition, though, if someone meets the behavioral criteria, then the need for support itself is what validates the diagnosis, with the severity level being tied to the amount of support required.

      January 24, 2012 at 20:13 | Report abuse |
  3. Barbara

    Please keep buying electronic "developmental" toys, computers, electronic games. Keep spraying air freshners. Keep driving your gas guzzling cars. Keep adding more NOISE, more STIMULATION, MORE, MORE, MORE! And you wonder why autism is so prevalent? It would be nice if human beings used the BRAINS they were BORN WITH!

    January 24, 2012 at 18:17 | Report abuse | Reply
    • Jabberwocky

      So you KNOW what causes autism? MY GOD, woman, why aren't you FAMOUS?

      I love it when dummies talk.

      January 24, 2012 at 18:20 | Report abuse |
    • Ed

      It appears that a lot of autism is caused by liberalized diagnostic criteria that have resulted in an apparent epidemic that has been a boon for activists and fund raisers, but resulted in labeling a lot of marginal cases and using up resources more needed by the more severe cases.

      January 24, 2012 at 18:30 | Report abuse |
    • Mosie

      Surely you are not suggesting that autism is caused by air fresheners, gas guzzlers and XBoxes. If you are I suggest you not be so condescending, because you are flat-out wrong.

      January 24, 2012 at 18:34 | Report abuse |
    • Deedee

      I'm so thankful that Barbara has unlocked the mystery of autism. Directly after finishing this post, I intend to throw away the last technological device that my son has access to, his iPad, that he uses as an AAC (communication device). I fully expect him to become neurotypical shortly after this, and it is all thanks to you, Barbara! No more worrying about affording our financial planning for my son's care after my husband and I are dead. No more running him to 25 hours of therapy and education at an autism-specific preschool. Clearly, my gasoline expense was foolish; I'm chasing unicorns, when all I needed to do was get rid of his iPad, you know, the one he uses to speak.

      Get your head out off your rear and live our lives for 5 seconds. You'll 1. crumble under the pressure. 2. finally get a proper idea of how hard it is to parent someone on the spectrum with "brain surgeons" like you telling us all about the condition.

      January 24, 2012 at 18:52 | Report abuse |
    • R Burns

      While it's true that some of us (myself included) could do with a lot fewer chemicals in the environment and a lot less of the constant stimulation that pervades the atmosphere, to pare down these things won't change genetics or the environmental damage that causes disorders such as autism and lupus. What many of us have noticed is that exposures bring on flares or episodes, but the disease still lies in waiting while the general population doesn't have to worry itself about anything but long-term effects of these things on health. I do equate autism disorders with autoimmune disorders, having noticed that my lupus flares are accompanied by a deeper desire for quiet and solitude, and a heightened interest in things technical. My IQ is over 150 and I'm not happy in social situations. Never have been. I've been asked if I suffer from Asperger's and would most likely receive that diagnosis if examined for it. Yes, if there were less stimulation we could, all of us, slow down and think a little more, relax a lot more, probably get more done (maybe even raise the health of our economy along with it). But doing so won't cure any disease.

      January 24, 2012 at 19:25 | Report abuse |
    • Melanie

      Barbra, Not sure if your comment was ignorance or something you have read, but it is obvious you have never been affected by someone with autism. I thought I was different my entire life. My parents did not notice my speech delays because they were too involved with themselves. I went to a school for the visually impaired until middle school. I was labeled “perceptual impaired.” Back in the 1980′s autism was extremely rare. Since my teens, the DSM helped counselors diagnose me with bipolar, anxiety, and then PTSD. They could not understand why I was resistant to medication. I always felt different, and had issues with fatigue, migraines, and coordination. In my teens I could not communicate, but they just took me as “shy.” I did not have the any support at home; therefore, I did not get the help I needed. I had many issues that constantly caused confusion in my life. My daughter had genetics testing last spring. Testing revealed my daughter and I have a very rare genetic disorder. We have a very rare genetic disorder that severe developmental and physical abnormalities are always present.

      January 24, 2012 at 21:06 | Report abuse |
    • Hatixhe

      I agree with you Barbara. Why trigger some defective gene we may have in our bodies when exposed to all this toxic? The more toxins in our life the higher autism and immune system disorders. I guess most of us don't like prevention, just waiting for the wonder pill to come to market!

      January 25, 2012 at 09:19 | Report abuse |
    • Canopy

      Barbara insert ADHD and you may have been right.

      January 25, 2012 at 14:38 | Report abuse |
  4. megan

    temple grandin's thinking in pictures is a great beginners guideline to different kinds of autism and how they can be managed. Different learning strategies at certain stages are imperitive to ensure the most high quality life long term

    January 24, 2012 at 18:19 | Report abuse | Reply
    • Together

      You cannot choose what your tax money pays for. Should sports, music, arts be paid for only by the parents whose children benefit from the programs (I'm not saying that they should)? When a fight breaks out in class or a "typical" child pulls a knife on a teacher or fellow student, or a classmate gets arrested for dealing drugs, is that any less disruptive or damaging to the other students than watching an ASD student have a meltdown?

      As a child, my sister and I went to private school, yet my parents never voted down a school budget because they believed every child deserved the best education they could get, no matter what the cost. Our neighbors, on the other hand voted down every budget once their kids finished school because they didn't want to foot the bill for other people's children. Well, other people paid the bill for their children. Now I have a child who needs special ed services and I am grateful for them. My son was once nonverbal and caught in his own world but is now in an integrated class on his way to being mainstreamed. Yes, it may cost more to educate some children, or to pay for equipment for sports or music, etc., but some people are paying taxes and getting nothing back (no kids in the system).

      We are all in this together.

      January 25, 2012 at 02:45 | Report abuse |
  5. Melissa

    I don't think the definition of autism matters because all kids should be treated with the same amount of respect!!

    January 24, 2012 at 18:19 | Report abuse | Reply
    • MaryLand

      This has nothing to do with "respect". It does have to do with whether schools will be required to provide services for some students who are now receiving them.

      January 24, 2012 at 18:23 | Report abuse |
    • Ron

      @Melissa – all children do deserve respect, but that is not the point and not what is at stake here. All children require the adaptations that can bring them closest to their full potential.
      @Maryland – you are so right.

      January 24, 2012 at 19:07 | Report abuse |
    • Toluene


      'Required'. Interesting choice. Someone has an autistic child, and I am to be 'required' to pay for it?

      Why? Why shouldn't that person pay for it? Why must their hands always try to grub my money that I could use for my own family?

      January 25, 2012 at 00:14 | Report abuse |
    • MaryLand

      Why are your tax dollars required to pay for it? For the same reason MY tax dollars are required to pay for YOUR kid's needs, you nitwit. Because it benefits all of us.

      January 25, 2012 at 00:18 | Report abuse |
    • Toluene


      Really? How precisely does it benefit society as a whole? Because I'm really curious.
      I'd absolutely LOVE to know. Or are you saying that it benefits society because it -might- cost us a little less later on?

      If I'm a 'nitwit', then you're a self-inflated idealist. Basic economics: it costs a LOT more to attempt to educate an ASD affected child. There's the added benefit of having one have that legendary meltdown in the middle of class. No, THAT wouldn't be disruptive or damaging to other students.

      No, you only have eyes for your pet projects; in your world-view, the rest of us should shut up and just keep right on shoveling money over for all the 'Special Ed' classes. Never mind that one special ed student consumes a significantly larger percentage of resources that could be used to educate several others.

      You wish the rest of us to fork up the dollars because you simply don't wish to. Or can't. But that doesn't bother you; you'll take it from the rest of us so that we have to scrabble even harder to provide.

      January 25, 2012 at 00:28 | Report abuse |
    • Sarah in KC

      @Toulene- I was so dismayed to see your comment! Isn't it all of our responsibilities- as human beings- to make sure that children grow up to be successful in life? I work with children and families with Asperger Syndrome at my job and it is those kind of remarks that set us back. I hope that you never have to walk in the shoes of a parent raising a neurological disordered child.

      And we are all very worried about this change to the DSM. These kids will not be successful without all the help they need.

      January 25, 2012 at 13:24 | Report abuse |
    • Mom in Jersey

      Most states have mandates in place that dictate services are provided for children so that all children can pursue a life of purpose after leaving the public education system. Some of these services cost more the others. I would hate to think that just because a child is traveling a different journey that some people don't believe they have the right to the chance at a purposeful life. We all pay taxes so that our public school systems can help all our children become the best people they can be. And most families who have ASD kids supplement out of their own pockets just to insure that their kids do get the best shot at the best possible life. It is a very narrow minded view point to say all kids don't deserve that chance.

      January 25, 2012 at 19:54 | Report abuse |
  6. TheLeftCoast

    There is an excellent pediatrician at UCSF Osher Center for Integrative Medicine, Dr. Sanford Newmark, who works wonders with autistic kids, as well as kids with ADHD. He also authored an excellent book called "ADHD Without Drugs," available on Amazon.

    January 24, 2012 at 18:20 | Report abuse | Reply
    • Aspie

      Dr. Kartzinel in Irvine is also fabulous. 2 aspies in our family had major chronic gastro issues. Kartzinel was able to fully heal the gastro issues and reduce many of the negative aspie symptoms, while retaining the aspie "superpowers" such as determination, hyper-focus, and giftedness (I realize this is not a real word – can't think of a better one at the moment).

      January 24, 2012 at 19:06 | Report abuse |
  7. Mr. White

    Psychiatry can find neither an etiology nor a treatment for autism. So this defensively arrogant branch of medicine seeks to sweep the disorder under the rug–by redefining it as much rarer than it is. Many people will suffer if the next DSM committee is cowardly and self-serving, and narrows the spectrum of Autistic Disorder.

    January 24, 2012 at 18:29 | Report abuse | Reply
    • Another Steve

      Wrong, wrong, and wrong.

      First, autism is currently a *behavioral* diagnosis with multiple, unrelated etiologies; there is no single cause.

      Second, at the present time there is no treatment for autism because we still don't know exactly what causes autism.

      Third, the proposed changes would do nothing more than bring the definition of autism more in line with the definitions of depression, personality disorders, etc. In other words, if it isn't severe enough to require treatment, it's a quirk and not a disorder.

      Having been diagnosed with Asperger's/ASD as an adult, and as the father of an adult daughter on the spectrum as well, I support the proposed changes. But what's needed more than anything else is public outreach and education as to what autism is, as well as what it is not. This, more than anything else, is what will weed out the posers looking for an excuse or a handout.

      January 24, 2012 at 18:58 | Report abuse |
    • Ron

      @ Another Steve – do you think there are a lot of posers who want accommodations for their child's learning requirements? I do see the changing of the guidelines making fewer people eligible as a way make schools, insurance companies and psychologolists lives easier. Removing a designation/label does not solve the problem or make the issue disappear.

      January 24, 2012 at 19:15 | Report abuse |
    • Another Steve

      Ron: I think there are some posers who want an ASD diagnosis for some perceived personal gain, whether it's an excuse for poor behavior or extra time to finish the SAT. And it's these posers who are responsible for the trivialization of Asperger's in the public's eye.

      The change in diagnostic criteria should make no difference to anyone who is already diagnosed and is receiving psychiatric support, since the need for support itself is part of the proposed diagnosis.

      January 24, 2012 at 20:19 | Report abuse |
  8. Cnrs Mom

    Heres an idea, lets take our asperger kids /"high functioning kids" who they think should be part of the spectrum and bring them down to these folks offices, with parents on the premisis of course, but let us do nothing and let them kids loose. Let them roam, touch, talk, hand flap, fixate, go into randomness, ask questions repeatedly, ask questions, again, reapeatedly, reprogram their comuter, eat their lunch, rearrange their desks, get in their drawers, ask random nonsense questions, and drive those people crazy. If they had to walk in our shoes for 1 day, with kids who they think don't qualify, they would quickly be changing their minds, and be begging us parents to take them home, and this matter would never be brought up agaiin.

    January 24, 2012 at 18:34 | Report abuse | Reply
    • Kristen

      AMEN!!! How about I bring my nearly 6 foot tall 15 year old, then take his internet connection? He has learned amazing coping skills but I would almost be willing to weather a melt down to show people the difference between a fit and a melt down. Even extremely high functioning ASD kids have triggers. I am pretty sure high functioning is a euphemism for "coping".

      January 24, 2012 at 18:41 | Report abuse |
    • PS

      I'll join the crowd and I'll bring my two high functioning kids along with me. My oldest in particular would be happy to change their minds – she's smart, opinionated, and proud of it, LOL.

      January 24, 2012 at 19:37 | Report abuse |
    • WI Snowflake

      Better yet come on over to my house and see how we have to live with a child who is high functioning autistic. Try to get through a week without frustrations. What will happen to the "high functioning autistics?" What is really behind this change? Sounds like there is more to the story... Usually it has to do with money.

      January 25, 2012 at 05:39 | Report abuse |
    • Heather

      LOL! I had the mental image of my son cornering a desk worker and speaking on the topic and every detail in his encyclopedic memory of his condition totally oblivious to the glazed look of bored misery on the fella's face. I'm sure after a couple hours of droning, they'd admit something was "different."

      January 25, 2012 at 17:12 | Report abuse |
  9. Cnrs Mom

    Heres an idea, lets take our asperger kids /"high functioning kids" who they think SHOULDN'T BE part of the spectrum and bring them down to these folks offices, with parents on the premisis of course, but let us do nothing and let them kids loose. Let them roam, touch, talk, hand flap, fixate, go into randomness, ask questions repeatedly, ask questions, again, reapeatedly, reprogram their comuter, eat their lunch, rearrange their desks, get in their drawers, ask random nonsense questions, and drive those people crazy. If they had to walk in our shoes for 1 day, with kids who they think don't qualify, they would quickly be changing their minds, and be begging us parents to take them home, and this matter would never be brought up agaiin.

    January 24, 2012 at 18:35 | Report abuse | Reply
    • Sarahmom

      I'm with you! I'd like to see them handle one of the extra fun rages our kids go into for no apparent reason too. Clearly – these people know everything they need to about spectrum disorders.

      January 24, 2012 at 19:00 | Report abuse |
    • Ron


      January 24, 2012 at 19:18 | Report abuse |
  10. Madmaxine

    I don't care how it is defined, as long as it doesn't qualify for SSI.

    January 24, 2012 at 18:38 | Report abuse | Reply
    • Another Steve

      Really? Why?

      January 24, 2012 at 19:00 | Report abuse |
    • PS

      It'll be my pleasure to burst your bubble on that one – it does qualify for SSDI. As someone who relied on it to supplement my low income as a single mother to an autistic child many years ago so she could have food and clothing, I say thank God for that.

      January 24, 2012 at 19:41 | Report abuse |
    • Another Steve

      PS: It's made a difference for my daughter (and the rest of my family) as well. I don't know what madmaxine's beef is; she's clearly clueless about autism, though.

      January 24, 2012 at 19:47 | Report abuse |
    • Sarah in KC

      Wow Maxine... I was just floored by your ignorant response.

      January 25, 2012 at 13:26 | Report abuse |
  11. Bob

    It's unfortunate that our social and medical support structures are organized around the philosophy of, "Why do I have to pay for that?" instead of trying to provide every child with an environment that gives them what they need to blossom.

    January 24, 2012 at 18:42 | Report abuse | Reply
  12. Bob O'Link

    Once I started seeing TV ads claiming that 1 out of 12 children was autistic, I knew the fix was in. Big Government can now take over and "fix" things. What a crock !! Get some doctor to label a behavior and, voila, we have a new disease that needs all our attention and money!

    January 24, 2012 at 18:42 | Report abuse | Reply
  13. Anne McElroy Dachel

    Dr. Raison spent most of this piece trying to convince the public that children with autism are mentally ill. Terms like "psychiatric disease" and "mental illness" don't apply to a neuro-developmental disorder like autism. Raison pretends that autism has always been around. He says nothing about regressive autism where tens of thousands of parents report that their children were born healthy and were developing normally until they suddenly loss learned skills, eventually ending up with an autism diagnosis. The American Psychiatric Association continues to fail our children. For years we were told that all the autism among our kids was the result of "better diagnosing." Now we're told that doctors were really misdiagnosing/over-diagnosing and they're preparing to UN-diagnose a generation of sick children. Autism officially has no known cause, no cure, and there's no way to prevent the next child born from also ending up on the autism spectrum. Raison has no answers and all he can do is talk about the label.

    Anne Dachel, Media editor: Age of Autism http://www.ageofautism.com/

    January 24, 2012 at 18:42 | Report abuse | Reply
    • Aspie

      Terms like "psychiatric disease" and "mental illness" don't apply to a neuro-developmental disorder

      Finally! A voice of reason. This whole debate is driving me bonkers. Regardless of where the line is ultimately drawn, the APA should not get a vote.

      January 24, 2012 at 19:01 | Report abuse |
    • Another Steve

      Ageofautism.com is devoted to the notion that the causes of autism are environmental (vaccines, chemical exposure, etc.) and is in denial about any possible hereditary factors...despite all of the evidence to the contrary.

      And any website that defends "Dr." Andrew Wakefield (whose study linking autism to vaccines has been thoroughly discredited and was motivated by his desire to profit from his OWN vaccines) is a public menace on the order of Jenny McCarthy.

      January 24, 2012 at 19:18 | Report abuse |
    • Aspie

      We go to Jenny McCarthy's doc & not once has he badmouthed vaccines to us. He blames our genetics. We don't excrete heavy metals well because of our genetic mutations. In his interviews and in his office, he clearly states he advocates going back to the vaccine schedule from the '80s. He does not recommend getting rid of vaccines entirely.

      January 24, 2012 at 19:26 | Report abuse |
    • MaryLand

      And on what basis does he advocate doing so? Where's his proof that the schedule has a single thing to do with anything?

      January 24, 2012 at 20:09 | Report abuse |
    • Aspie

      Maryland – heavy metal levels are measurable in blood. Generally, they are higher in spectrum patients and patients with certain cancers. The levels are lower in countries like Finland, whose vaccine schedule resembles our schedule from the '80s. I'm not sure if you're really asking this question or just expressing rage, which is hard to tell in forums like this. If you're truly curious, this information is quite accessible and should be easy for you to chase up.

      January 24, 2012 at 20:27 | Report abuse |
    • MaryLand

      Heavy metals aren't present in vaccines any longer, and were never present at levels that would cause such reactions. Had they been, anyone vaccinated would have had the same reaction.

      Your doc is charlatan.

      January 24, 2012 at 21:13 | Report abuse |
    • quirkyandlaughing

      MaryLand – Call him what you will, but he saved my family when no one else could.

      January 24, 2012 at 22:25 | Report abuse |
    • MaryLand

      Saved it from what, exactly?

      January 24, 2012 at 22:58 | Report abuse |
    • quirkyandlaughing

      Chronic digestive issues, poor growth, poor assimilation of nutrients, chronic vertigo, anxiety, depression and SPD

      January 25, 2012 at 11:39 | Report abuse |
  14. Anne McElroy Dachel

    I wrote this about the changes proposed for the DSM.


    Anne Dachel, Media editor: Age of Autism http://www.ageofautism.com/

    January 24, 2012 at 18:45 | Report abuse | Reply
  15. Sarahmom

    My daughter has Aspergers. It was clear to us there was something different about her developmentally from the time she was a baby and we have had to fight tooth and nail for a diagnosis as is because she's very high functioning. My husband and I had to fight to get someone to finally see that she is not normal. So the idea of redrawing the lines scares the pants off me because of what that means for parents and children who are like my daughter. It's heartbreaking to admit that your child will always be different – add to that the inability to get help when you need it. For those that think – it's just a diagnosis and it should be reserved for specific situations... please, I invite you to my house because you must have a better idea how to handle my daughter's full-force-freak-out of terror because the neighbor is mowing the lawn. Show me how to make it easier for her to fit in with the kids her age who look at her like she's an alien. These kids on the line are the ones who will suffer from this. My daughter will suffer from this. If you don't want me to call her autistic or spectrum disorder – what do you want me to call it? I will NOT let my daughter pay the price because she's not 'broken' enough for you.

    January 24, 2012 at 18:49 | Report abuse | Reply
    • woodbourne

      The issue is that you want me to pay taxes to support your child forever. These kids cost tens of thousands per year to educate and you didnt bother to insure yourself against that possibility. Plus you have only the most tenuous proof that all the special treatment accomplishes anything whatsoever.

      January 24, 2012 at 19:39 | Report abuse |
    • PS

      woodbourne – Exactly how would you propose we parents of autistic kids "insure" ourselves against the "possibility" of their losing their diagnosis? Do you have ANY freaking clue how much it would cost if we were forced to get therapies the education system provides our kids, or other services for that matter, and that's even with private insurance (which often denies payment on autism-related treatments unless state law forces it to happen)? Or what it would take to find a school that would even look at our kids if the special education programs that allow many of our kids to go on and become productive adults went away? The scams and rackets that various experts and schools pull on those of us with kids on the spectrum is a crime – it can run into six figures per YEAR having to pay for all that on your own. Where is a family going to find that money given the average household income in the US is $50K/year? Are we supposed to live on the streets and starve to death while we're pouring every penny into these services? Honestly, unless you've walked in our shoes, don't judge, and keep your dang mouth shut.

      January 24, 2012 at 19:49 | Report abuse |
    • Z

      Well, then, what would you have us all do? Are your children going to ever be able to contribute to society? Will they ever hold jobs? Pay income taxes?

      This society cannot pay an infinite amount of money to try to 'educate' children who cannot be educated, who will never be able to function at more than a very basic level, and who will never contribute enough to merit the expenditures you are demanding.

      There are finite resources. Are we going to spend them on the children who will contribute or those who never can?

      I sympathize with the parents of children who are severely impacted by autism, but to what level can our economy afford to support those who cannot function beyond the most basic level?

      January 24, 2012 at 20:14 | Report abuse |
    • Cristina

      Seriously, Z?! Are you trying to imply that some autistic children will never function normally or never contribute to society? What are we supposed to do? Get rid of all of the people with developmental disorders that can't get a well paying job? Do you know anyone on the spectrum?! WOW!

      January 24, 2012 at 22:37 | Report abuse |
    • Z

      No. Not at all. Do you really contend that ALL autistic children will be able to work at a job? Pay taxes? Live independently?

      If so, I have news for you.

      January 24, 2012 at 23:00 | Report abuse |
    • Z

      There are finite resources for our children. Are we going to pretend that those who are diagnosed with autism at the most extreme level are going to be educable? Productive? Will they be able to live independently? Contribute in meaningful ways to society?

      I'm not unsympathetic to these children or to their parents. I'm just realistic. Whom should we fund? Those who will contribute the most to our country's economy and society? Or to those who will only be minimally able to function?

      January 24, 2012 at 23:08 | Report abuse |
    • Sarahmom

      I just can't make you understand by posting on this board what we go through. Will my daughter be functional in society – I have every hope that she will be. That's the whole point. This isn't about her capabilities (she's one smart little cookie). The intervention she receives make a difference in her life helping her to deal with people and situations. No matter how bright and capable she is – Would you hire a person who doesn't understand personal boundaries or who shuts down when a vacuum cleaner runs? One day, this smart little girl is leaving my house to go into the world and pay taxes to appease you and if YOU want her to contribute then she needs to be employable. And without these interventions, she will not be. That's the point. Kids that are really high functioning, like my daughter, may no longer qualify for the services they need to help them adjust to a world that doesn't work the way they do. When you act like we can just parent our kids through this, you just demonstrate your ignorance. This is hard. We need support. They need support. Come walk a mile with me, would you? I can't, on this board, get you to understand what it's like to realize at midnight that your kid doesn't have a red shirt to wear tomorrow and that this small detail will be the difference between a good morning and a freakishly horrible one. And I can't get you to understand the guilt you feel as a parent because everyone is looking at you thinking you should be able to control and discipline your kid through that. You don't know what it's like to be judged a bad parent, or to have your baby be judged a brat. All children, whether or not they are high functioning or low functioning deserve the opportunity to reach their potential and have the best life possible for them. And your comments sicken and disgust me because while you are quick to empathize, you clearly just don't get it.

      January 25, 2012 at 10:50 | Report abuse |
  16. Kristen

    I guess my question is "what do we do for kids with Type 1 diabetes?" If the pancreas is just starting to fail, do we just let them go ahead and wait since it is marginal? And what about the thousands of kids who are now being diagnosed with Type 2 diabetes? SInce it is overwhelmingly caused by obesity, shouldn't diabetic kids be denied assistance? If they need a transplant then maybe but otherwise, they can just deal with it. This is the argument that needs to be made. Autism CANNOT be cured, but it can be managed to some degree. Every ASD child can make improvements. I am not talking about miracle cures. I am talking about learning a hand signal to indicate that they have soiled themselves. And using the cue. This is miraculous tot he parent of that child and should be worth assisting. For the higher functioning ASD kids, learning a set of coping skills can make the difference between success in life (job, marriage, family) and failure (which includes drug use and risk of suicide).

    January 24, 2012 at 18:51 | Report abuse | Reply
  17. MomofHFA

    I'm so concerned about my daughter's education if this change is made. Without this diagnosis she will no longer receive help at school through her IEP. The school will not be required to give her additional services. What kind of education will she have? Does the APA understand the ramifications to patients and the famiilies that this change will cause? I am praying that they do not do it.

    January 24, 2012 at 18:52 | Report abuse | Reply
  18. Aspie

    I do not understand why American Psychiatric Assoc. or the DSM are involved. Autism is not a psychiatric disorder.

    January 24, 2012 at 18:58 | Report abuse | Reply
    • Another Steve

      Your statement makes no sense.

      Autism is starting to look like a disorder of brain development with subsequent effects on behavior. One could say the same thing about chronic depression: for some reason, the brain produces less serotonin than normal. Does this mean that depression is also not a psych disorder?

      You self-identify as an aspie. Why? Is Asperger's a psychiatric disorder or not, and is it any different from autism?

      January 24, 2012 at 19:08 | Report abuse |
    • Aspie

      Another Steve – Yes, I'm Aspie, as is my son. My opinion is that Asperger's is not even in the neighborhood of full autism. However, I don't think psychiatrists are the ones who should make this call.,

      My personal experience is that Asperger's is a full-body disorder. My son and I are both afflicted with many of the health issues that Aspies are a greater risk for. Biomedical intervention improved our health immensely and reduced our Aspie traits, while retaining our Aspie gifts (we did not chelate, use hyperberics or anything controversial, so please don't jump all over me for that). We did not require psychiatric intervention. By improving our health, we are able to embrace Asperger's as a gift.

      I realize this is not the case for all Aspies. I suppose research and time will tell the whole story.

      January 24, 2012 at 19:17 | Report abuse |
    • Ira

      Being autistic is no more a disorder than being gay is. Or left-handed.

      January 24, 2012 at 19:23 | Report abuse |
    • Another Steve

      How do you think Asperger's is different from autism? Is it just a matter of degree, or are they two distinct conditions?

      Since the brain controls the body, any disorder in brain development, structure, or function can have whole-body effects. Is Parkinson's a brain disorder or a whole-body disease? Is this even a relevant distinction?

      Finally, how do you distinguish between the "traits" and the "gifts" of Asperger's? It sounds like you're trying to make a distinction between Asperger's and autism, when the evidence suggests that they are different parts of the same spectrum.

      January 24, 2012 at 19:29 | Report abuse |
    • Aspie

      Another Steve, answers to your questions:

      How do you think Asperger's is different from autism? – same spectrum, but different to such a degree that if they are ultimately separate diagnoses I would be fine with that.

      Is this even a relevant distinction? – For me, yes. Because of the distinction I was able to be treated and am now much healthier. I had Asperger-related complications 3 systems (endocrine, digestive, nervous)

      Finally, how do you distinguish between the "traits" and the "gifts" of Asperger's? – I used the word traits when I meant limitations. In my family's case, those would include SPD, poor eye contact, clumsiness, gastro issues, social issues, depression, anxiety and the like. Gifts would would include ability to hyper-focus, determination and "giftedness" (for lack of a better word)

      January 24, 2012 at 19:39 | Report abuse |
  19. Mion

    I have Asperger's syndrome. I think social awkwardness and "nerdiness" crosses into Asperger's when there is a very noticeable delay/lack of social skills along with other signs of autism – but NOT to the degree of high-functioning autism.

    There has been heated debate over whether to lump Asperger's in with high-functioning autism, which is completely ridiculous. Ask any psychologist who works with autistic kids, and I guarantee that the vast majority will say that the two are completely different. Aspie kids in general show no milestone delays, and the ones who do aren't even close to the level of "real" autistic kids. We have some problems in daily living since we tend to be very messy, but it's mostly limited to having to be reminded or given advice on cleaning our rooms, hygiene, etc. We have other problems, but our disabilities are considered to be too mild for even high-functioning autism.

    But speaking about autism, does anyone have a kid on the ASD spectrum who's having a bunch of problems in school? I'm seventeen and cannot stand a regular classroom environment, mostly because Asperger's interests are very narrow and intense and we lose interest extremely fast if it's a topic we don't like. Projects are a mess because my brain is wired to focus on the little details, so I'll realize that the project is due tomorrow and I'm not even close to finished because I spent the whole time perfecting one part of it. I'm very sensitive to noise and get terribly nervous if people are moving around me and talking loudly. I like rigid routines and don't like it when I'm presented with a pop quiz or something without being told first. And Asperger's is co-morbid with many other disorders...don't even get me started on how many times I've been yelled at for not paying attention because I was obsessing over things and performing compulsions due to my OCD.

    January 24, 2012 at 19:09 | Report abuse | Reply
    • Ron

      Thank you for sharing. It helps this parent understand more about what my son deals with.

      January 24, 2012 at 19:30 | Report abuse |
    • mom of PDD NOS

      My son was diagnosed with PDD/NOS (Autism #5) -Like you, he also is sensitive to noise and has OCD... He is in 7th grade. He does have trouble moving on from a problem he is stuck on and then coming back to it. He is not messy at all. He is very organized, and makes his bed every morning. He likes to get up early. He is socially awkward, but seems to be finding a few kids who can put up with his quirky behavior. Funny how some symptoms overlap, and others do not.

      January 26, 2012 at 12:12 | Report abuse |
  20. Wilbur

    It is clear to me that this is just another attempt to cut back on social services because of the huge debt problem that this country is facing. If we start cutting our services, we are not controlling our debt, we are just letting our debt control us. We need to tell the politicians in this country, especially those in the GOP, that we will not have any of this nonsense!

    January 24, 2012 at 19:09 | Report abuse | Reply
    • Cnrs Mom

      Wilber you nailed it on the head. They don't want to put the money out for these kids. Without IEP my son would be failing school, without medication, he would be kicked out of school. These kids present with behavior problems early on, and it gets worse as they get school age. It takes years to get a proper diagnosis and get them the help they need. Now it sounds like they want to throw this generation of special needs kids out with the bathwater out because the governmnet is trying to be slick and reclassify. My son will never be able to hold a job, he will never be able to suppor himself. He is 12, still cant tie his shoes, still puts his clothes on inside out and backwards. High Functioning kids in the spectrum, WITH OUT ASSISTANCE will end up suicidal, incarcrerated, homeless, in mental wards, and unemployed, and a burden to society more so than they are now. SAve a buck now, pay dearly for it later

      January 24, 2012 at 19:46 | Report abuse |
  21. Ira

    This is stupid. Why would someone be stgmatised for being labelled autistic? The diagnosis simply legitimises their differences, allowing these people to accept who they are rather than trying to confrom to some version of normal which doesn't apply to them.

    January 24, 2012 at 19:21 | Report abuse | Reply
  22. stephanie canfield

    Autism doesn't compare to blood pressure. Autism is not one problem it is a spectrum of them. So how, even for a severe case do you say "that there.. that symptom there is Autism". If it is a spectrum, then it runs from mild to severe. It doesn't make sense to take away from one end or the other. The mild case of Autism doesn't just cause "nerdy" kids it prevents them from fully integrating, understanding and living in our "normal" world and it is heartbreaking. For many mild cases the chance to be happy and healthy to he extent that is possible for them is by providing services so they can LEARN to live in our "normal" world. Are we ready to just IGNORE that their problems exist? Are we really ready to tell a child with mild Autism "it's just in your head, get over it" because we don't want to label them or pay for services that can help them? Seriously, are we ready to do that to our children over what is for all purposes a game of semantics?

    January 24, 2012 at 19:32 | Report abuse | Reply
  23. dahlimama

    this has the stink of politicians and insurance companies lobbying to save money and maximize profits all over it. Apparently the so call lesser Aspie's ( the authors calls them just geeky kids) should not be labeled for their own good ( or helped because of the cost ) but you put these so called mildly geeky into the regular population of kids in school and wonder what went wrong when they get so tired of being picked on because they don't fit in and don't have the social skills that they bring a gun to class and take out their teaches and a bunch of the norms.

    January 24, 2012 at 19:39 | Report abuse | Reply
  24. Arman Khodaei


    Many of you may know me. My name is Arman, and I was diagnosed as being autistic. I don't know yet what to make of the changes to the DSM. It has been a big topic for the last couple of years. Label or not, that doesn't change who I am or how autism has impacted my life. Autism is a wide spectrum, and it does affect people differently. Anyway, if you would like deeper insights into my mind that of someone on the autism spectrum, please visit my blog at my website http://www.empoweringautism.com

    January 24, 2012 at 19:40 | Report abuse | Reply
  25. Cnrs Mom

    Definition of RECLASSIFY – borrowed from Walmart
    Oh your ...... back from having a baby, surgery, car accident, brain surgery... well you've been reclassifeid, you now have less hours, no benefits, and have 3 peoples job to do. Another issue completely but the same sleazy practice.
    These decison makers need to be monitored so our children get afair shake.

    January 24, 2012 at 19:50 | Report abuse | Reply
  26. Julia davis

    When My daughter was four, I took her to our local school system to assess for physical therapy. She was clumsy and had a poor sense of balance. She also had been born prematurely, had a complicated delivery and was extracted with forceps. My working diagnosis was minimal brain dysfunction. The school system sent this shy girl over to an evaluation where the team probably spent all of three hours with her. We elected to ignore the diagnosis and move forward.
    My daughter went on to be a superb swimmer and runner (USS AA swimmer). She won spots at summer music festivals as a teen, attended summer camps that were very mainstream. She had friends and an uncanny sense of others. She is now working on her PhD in clinical psychology. She has a boyfriend and a social life. She has no quirks, never cared for Harry Potter or technology. It frightens me to think of what her outcome would have been had I accepted the autism label. The autism label did harm us. Every time she did something that seemed the least "autisitc", I flinched, wondering if I was in denial.

    Labels can damage and individuals can limit themselves with the confines of the labels. The diagnosis in the DSM-IV was too broad and needed tightening.

    January 24, 2012 at 20:11 | Report abuse | Reply
  27. Maurine meleck

    This new proposed change in the definitionof autism reaslly says a lot about the inadequate performances of doctors over the last 2 decades. We wonder how we could have ever trusted their opinions. Autismis NOT a mental disorder as this writer suggests. It;s a metabolic disorder affecting every organ in the body. Most of our children on the spectrum suffer from oxidative stress, immune dysfunction, inflammatory bowel disease, encephalopathy. When you can fix the biological problems, the children most often get better and some can lose their diagnosis, But they need medical attention, not psychiatric. I ask, " if autism is in this mental book, how come you don't have Downs syndrome, alzheimers disease, MS, ALS in the same book. ? Moving on from there, the possbile change will affect so many children in a negative way, . I see them losing services they once had and need and I see newly diagnosed being denied any services. Although Catherine Lord talks out of both sides of her mouth(it will exclude many from being autistic) but I don't see they will lose their services)
    at the same time she makes no sense. Here's what I see: the denial of an autism epidemic will grow from a branch into a large tree, insurance companies will party until dawn, politicians will all buy new cars, drug companies will be rolling in more dough then ever, and psychiatrists and psychologists will have a field day. What they are doing is wrong, so wrong. They are not thinking of the health of our children. They couldn't care less.
    Maurine Meleck SC

    January 24, 2012 at 20:19 | Report abuse | Reply
  28. Nicole

    For someone who works so closely with people with autism, Dr. Raison did a terrible job of using people first language...

    January 24, 2012 at 20:20 | Report abuse | Reply
  29. Mr. White

    "Another Steve" states that autism is not a psychiatric diagnosis but "a behavioral diagnosis." However, when a condition is given diagnostic status in the DSM, it ipso facto becomes a psychiatric diagnosis. Perhaps "Another Steve" is unfamilar with the DSM, and unfamiliar with the power that a few score of psychaitrists and a few psychologists have in affecting peoples' lives.
    Quite naive is "Another Steve."

    January 24, 2012 at 20:23 | Report abuse | Reply
    • Melanie

      Autism is a neurobilogical condition and should be diagnosed by a neurologist or developmental pediatrician. I would not trust a psychiatrist to treat my daughter. Anyone treating autism must understand the biological component. The DSM isn’t capable of doing that!


      January 24, 2012 at 21:39 | Report abuse |
    • Sarah

      Simple Mr. White, Autism is a NEUROLOGICAL disorder, meaning it affects the BRAIN and its development. Autism alone has NOTHING to do with ones mental health, however there are several co-morbid conditions that have been diagnosed with Autism that are considered psychiatric. When my kids were diagnosed, it was done so by a developmental pediatrician and not a psychiatrist/psychologist.

      January 26, 2012 at 11:04 | Report abuse |
  30. Jill

    My son was born prematurely (induced) due to the cord being around his neck twice. He was a 'blue baby' and had to be resuscitated and intubated. As an infant he refused to feed and would only tolerate soy milk. He expressed displeasure when being held or touched. As a toddler he still continued to reject any type of solid food and wearing clothes or shoes aggravated him. He communicated using gestures and was easily frustrated. He was obsessed with trains and did not engage in 'pretend' play. In pre-school he would cover his ears and hide when the class became noisy and would not interact with his peers. At age 4 he was diagnosed with failure to thrive and given a feeding tube to treat malnutrition (after 1 year of feeding therapy he still refused solid foods). Upon entering school he had meltdowns in class due to noise, sitting to close to others and having to touch things he deemed 'unpleasant' like paint, glue, sand, etc. He struggled terribly with the academic portions of school as well and was unable to put his thoughts or feelings into wordsThankfully we have excellent private insurance and sought out help at the request of his teacher. After 2 years of occupational therapy and little progress we were referred to a medical psychologist. After 4 weeks and 15 hours of testing he was diagnosed with autism, inattentive ADD, anxiety, sensory processing disorder and dyslexia. The school district had to conduct their own testing in which they reached the same diagnosis and formulated an IEP. We live in a neighborhood with Mello-Roos and high property taxes so we are fortunate the school has the resources to assist our son. This is just a minuet sample of the difficulties we face each day. Whether you believe autism is 'real' or not, these are not 'normal' behaviors. People instinctively communicate, interact and at the most basic level, eat.

    January 25, 2012 at 01:57 | Report abuse | Reply
  31. Susan, Special-Education Attorney, California

    Are the insurance companies advocating for the re-definition so that they do not have to cover therapies for so many people diagnosed with Autism? Can't this energy be spent on discovering the cause of the explosion in Austim?

    January 25, 2012 at 08:32 | Report abuse | Reply
  32. jane

    My husband has autism, did not walk until he was 4 and non-verbal until he was 7. He is now in his mid 30's and is a great father, husband and has a sucessful job. There is no better treatment then "tough love". Todays parents of children with autism need to think of what will there child be like at 35 or 40. You child will not adjust or learn anything if you make excuses for them. You are doing more harm than good.

    January 25, 2012 at 10:42 | Report abuse | Reply
    • Mother of a Different Rock

      Though my son is diagnosed we do not use his diagnosis as an excuse but instead the diagnosis allows him to have treatment options.

      January 25, 2012 at 13:48 | Report abuse |
  33. Jason

    I am writing this in hope that someone will help the public to understand the main issue here.

    Getting your child diagnosed as autistic is actually really, really difficult. Even with the extremely wide spectrum as it stands today, doctors will tell you over and over again that "every child develops at a different speed", and to "wait it out". We had to go and do evaluations on our own with neurologists until someone would actually come forward and say that yes, he is on the autistic scale.

    This prevents a lot of people from getting the early treatment for autism that is so desperately important in making a significant impact.

    By limiting the definition of what is "autism", there will be a ton of kids out there that just are undiagnosed. 1 out of every 100 kids has autism, and the number of those that have severe autism is actually significantly less. The vast majority of these kids are going to be pushed outside of the spectrum.

    The result is going to be a situation where kids don't qualify for help. And none of the services are going to be covered by insurance, so most families will not be able to afford to pay to get the help that they need. Our son is thankfully on the lower end of the spectrum. Through a lot of hard work and taking advantages of services available (and paying a lot of money out of our own pockets), he is learning to communicate and we think that he is going to be able to be a functioning member of society because he is going to be able to communicate.

    Without insurance coverage though, none of this would be possible. It would cost us thousands and thousands of dollars per month. Additionally, all of his service providers would go out of business.

    The real tragedy of this redefinition is that kids like Jaden are now going to be unable to receive help. One out of every 150 kids in this country (the ones on the lower end of the spectrum) is going to be unable to receive the help they need to get better, to improve, to speak. Millions of kids. Trying to attack the problem by insinuating that the diagnosis is wrong, that the numbers are growing because of the wider range of the spectrum or that more people are identifying the issues is absurd. One out of 100 kids today isn't able to speak. Simple communication is difficult. That wasn't happening 20 years ago. This isn't about diagnosis, it is about a new problem that exists today that didn't exist before.

    Please, please don't take away therapies for a child like Jaden. After years of frustration, we now have hope. He can talk to us and express how he feels and we actually have conversations. Don't take that hope away from millions of parents in the United States.

    Thanks for reading,


    January 25, 2012 at 10:47 | Report abuse | Reply
  34. Mother of a Different Rock

    I am a parent of a child with "mild" Autism. I research much on the topic and have some understanding. I am in school for elementary education and my reading on the subject of Autism is more from a social and educational angle rather than a medical though they do intertwine at some points. I have noticed some questions in the comment string and will try and aswer them as best I can from my point of view. So that you understad my name, let me share with you something I once heard. An adult autisic male once compared people to rocks. Mostly the same except for a few shiny peices. The few shiny peices were people with autism and simular disorders. I have learned much from my son and even through his struggles he stands firm like a rock. So I see my son as one of the different rocks. Beautiful and interesting yet solid. That is why I am a "mother of a different rock" forgive my spelling, I do not do well with spelling and there is not spell check on here 🙂

    January 25, 2012 at 11:06 | Report abuse | Reply
  35. Mother of a Different Rock


    You ask if we would rather place a child in a clarroom with other children like them (exclusive environment) or place them in a group with other children (mainstream environment). This is not an easy answer by any stretch. The ultimate goal should be mainstream if at all possible, but as it sits now Autism is a spectrum disorder and it varies on the abilities from child to child. Each state is different but all have a handbook given to parents of 504 children. These children are known as exceptionalities and the handbooks state in general that every child has a right to free appropriate public education. Determining what is appropriate is the difficult part. If a child is not able to cope in a mainstream environment then of course they need to be placed in an exclusive class. It is important to know that all of the children under the Autism Umbrella should have a chance at an independent life if they have that as a possibility. The only way for them to be independent is to subject them to the social norm early on life so that they may adapt some behaviors of the social norm or neurotypical children. They also need to be introduced to as many social situations as possible. Teasing will happen of course but the child can develop defences agains it with the help of involved adults and proper shadowing. I hope this answers your question. Thank you!

    January 25, 2012 at 11:47 | Report abuse | Reply
  36. Mother of a Different Rock

    Another Steve,

    I empathize with you. My son is very intellegent and scores master in some areas but his defficits are so low that he scores an overall basic. There are issues that lie within the differences between the criteria for a medical diagnosis and the critieria for an educational diagnosis. Depending on the state laws, many educational establishments do not need to recognize the medical diagonis because the critiria is different. My concern is the same, under what category are they going to be placed? If these children will not fit under a critiria they may possibly loose their supports which means that the independent life may be unattainable. Then we have not moved forward, we have only retreated. Suppose rather than the educational system relying on any diagnosis at all they saw children as individuals and created an individual plan for each one. Well this could only be applied in theory because we do not have enough educational reinforcement to handle the work load. Again forgive me for spelling errors! I think to fast for my fingers some times and can not spell to begin with. Thank you!

    January 25, 2012 at 12:15 | Report abuse | Reply
  37. Mother of a Different Rock


    I share your concern but not entirely. You can not group children based on IQ scores because even the IQ scores have subgroup components. Take a child who scores average. But are they really average. I know one child in particular who scores mastery in portions of reading and data collection however they score significantly below in imaginary and independent thinking. They are master in certain math subgroups but score low in math that deals much in written explanation. This child has read fluently on the 8th grade level since second grade with the understanding of words on the college level. The child maintains honerable mention on a low end and principles list on the high end. He can tell you the fatality in wars as well as equipment used, how it was uses, and why the use of certain equipment stopped. He has limitied interests and can out talk a war veteran. So how can we group based on IQ when the IQ does not give complete details to show what a child is capable of. Are you saying that someone with a low IQ should be placed in a group even though they are equivelant to a genious in portion. I do share your concern of those falling behind or those who are not challenged enough but I do not feel based on data and research that IQ grouping is the answer. It also is not specific enough and is stereotyping to many individuals with not enough information and too much would be lost. Again forgive spelling.

    January 25, 2012 at 12:30 | Report abuse | Reply
  38. ADHD

    They need to do this with ADHD as well, far too many people get diagnosed with this. I dont even believe it is real, no less do 3 out of 10 people have it. We used to just call it hyper, not its a disease.

    January 25, 2012 at 12:42 | Report abuse | Reply
    • Mother of a Different Rock


      Is your opinion from experience or research or neither. In fact I have ADHD but was never hyperactive and it why I was missdiagnosed. My mind races but I am not kennesthetic so it does not show physically. A belief in it not being real is different than knowledge. You are entiltled to your own opinion but I would encourage you to read "living with adhd" before deciding on absolutes.

      January 25, 2012 at 12:59 | Report abuse |
  39. Mother of a Different Rock

    Dear Susan,

    I do feel that insurance not wanting to pay is a deffinate possibility. In 2009, (think this is correct) insurance companies who offered insurance to business with 50 or more employees had to start paying for some aba therapy for children who met the Autism diagnosis. ABA therapy typically runs from 35.00.00 to 125.00 an hour depending on appication. This means that per child the costs would be between 300.00 and over a thousad a week. Not all children with autism have ABA therapy but those who do show marked major improvement. It is quite a financial burden on insurance carriers and I am sure they are trying to find anyway possible to alter or discontinue treatment plans for some of the children if not all. I do also agree that not enough time is spent on the cause. If we could find the cause, we can not fix what has happened more than likely but we can keep it from happening again. Again forgive spelling 🙂

    January 25, 2012 at 12:46 | Report abuse | Reply
  40. Mother of a Different Rock

    Mom in PA,

    I share your concern as my son is also diagnosed educationally and medically with "mild" Autism. Due to this becoming a concern I am trying to find the paths through the system, so parents can be heard. Our children in some cases do well because of the work we have done as parents and as educators. If our hands become tied then how will our children continue to get the help they need to survive in the social world. I do know without my son's support system college probably will not happen, neither will a job, marriage or an independent life in general. It as taken hours over days over years to get where we are. In an odd way parents like us are in the position of "What are we going to do now?" If you need my contact info, it is jandmcamps@gmail.com . We are stronger and more intelligent in numbers.

    January 25, 2012 at 12:54 | Report abuse | Reply
  41. Mother of a Different Rock


    I shared the same laugh myself! Maybe she is the one who decided that seizure disorder was caused from television. No television trigers the symptoms of someone who is diagnosed with seizure disorder just as too much stimulation triggers symptoms of somone diagnosed with autism related disorders. It does not cause the disorder only triggers the behaviors in some cases. The disorder is already there. Can anyone give Barbara a round of applause!! HEY HEY the genius.

    January 25, 2012 at 13:04 | Report abuse | Reply
  42. Mother of a Different Rock


    I will try and help clear things up some. If we do not provide children with help early on, then when we pass every thing these, now adults, need from food to clothing, to medical, to utilities. The help is to allow these children to be self supporting individuals who contribute to society. The burden now is far easier than the burden later. Are you ready to provide housing for my son, or utilities, or food. Also there is a lot of inteligence locked in their minds which therapy helps to release. So this child may be the child to cure aid or get rid of hackers. Maybe you need to talk to my son a day today, and watch a video of his past. Compare who he is to who he was. He is still autistic but now he can share his thoughts and show you how your pc or lap top works.

    January 25, 2012 at 13:14 | Report abuse | Reply
  43. Mother of a Different Rock


    HAHA, love it. Can I join please. I would love to bring my "high functioning" "mild" autistic nine year old. I will also be taking anything electronic away (to only get rid of his autism of course) and place him with them for just a day. He still has to use wipes because he can not deal with toilette paper and still has accidents too. OH but on the bright side he can discuss whatever war you want him to and ask tons of questions that you either may or may not know the answer to so he can answer them for himself. Won't they love it. I think they will give him back to me within the first hour.

    January 25, 2012 at 13:21 | Report abuse | Reply
    • Cnrs Mom

      LOL, I totally think we need to have a sit in, and to the other parent who mentioned the rages. OMG , how could I forget to mention that!!! . Oy! such angst ! The screaming, and crying, snotting and slobbering of simple misunderstandings and inability to transition from one thing to another. They become completely unglued, and if we don't hold them together who will
      Without assistance, proper diagnosis, medications if needed they will end up lost. These children are children and need all the help they can get to learn how to cope, manange and live with this cruel disorder that makes it so very difficult tof or them to ever live a normal life in the mainstream world.

      January 26, 2012 at 22:54 | Report abuse |
  44. Cindy

    Information and education are the power in dealing with autism. My son was diagnosed at age 4 in 2000 and the following day I was on the phone lining up every speech, physical, and occupationsal therapist I could find as well as getting him enrolled in early intervention through our local Board of Developmental Disbilities. I also sought out other parents with the same situation so that we could work together for the benefit of our children in creating a support network. Our insurance paid for ZERO of his speech therapy even though my son still could not speak more than a few recognizable word at age 5. But, the help and support from all the other sources got him to where he is today: a successful, high-functioning, and happy high school freshman with a bright future.

    January 25, 2012 at 13:53 | Report abuse | Reply
  45. Michael Forbes Wilcox

    My views are found here: http://www.mfw.us/blog/2012/01/20/is-it-time-to-abandon-the-dsm/

    January 25, 2012 at 13:55 | Report abuse | Reply
  46. Canopy

    Growing up I was socially awkward but tested extremely high on most standardized tests...so high that school officials said I tested too high to be considered academically gifted. My mother never labeled me and always expected me and pushed me to do for myself. I'm grateful for that. I'm still socially awkward and tend to prefer time by myself but I got my master's degree in public health, am a professional visual artist and own my own home...as a single woman. I see being high-functioning in today's society as an ADVANTAGE. I have photographic memory, can remember any phone number in my phone (which most cannot do), and have a profound sense of unconditional love for most I encounter because I know what its like to be an out-cast!

    January 25, 2012 at 14:52 | Report abuse | Reply
  47. Kevin

    Yes, it sucks that a line has to be drawn. But that line has to exist, and the current guidelines for autism are too loose. Being on the autistic spectrum has become a get out of self-improvement free card for a lot of people. I'm not dogging on any of the folks who actually need help, but there are quite a few jerks out there that hide behind the psychiatric label of autism.

    "Man, Jason keeps interrupting me whenever I talk."
    "Oh, he's mildly austistic."
    "Oh, well, that's okay then. I won't tell him how annoying that is."

    And Jason's walking away, smiling to himself because he can get away with anything. He's mildly autistic.

    January 25, 2012 at 14:55 | Report abuse | Reply
  48. CommonSense

    The only reason why this is an issue is because of the ridiculous way in which the health care system works in this country– if a person, child or otherwise, has a cognitive issues that impairs their ability to pursue a quality life, they should have access to treatment, period. They shouldn't be required to meet some ridiculous diagnostic billing code. Point is: it shouldn't matter and only does because of our retrograde approach to caring for our own citizens.

    January 25, 2012 at 15:25 | Report abuse | Reply
  49. Mel & Sue

    Previous post:
    "Susan, Special-Education Attorney, California
    Maybe the insurance companies are behind this so they don't have to pay for therapies unless there is a formal diagnosis, so if the definition is changed, they do not have to cover therapy for so many insured people.
    Also, why is this energy not being spent in discovering the CAUSE of the explosion in Autism?"

    These are my feelings exactly! My son has aspergers, goes to college classes, yet is unable to make a phone call or make friends. He rarely talks. Will he no longer be considered on the spectrum because he can attend school? How do I get help for him to perhaps someday live on his own without any resources or even a diagnosis? How do I explain to him that he is possibly no longer autistic, if it come to that? How is this helping anyone?

    January 25, 2012 at 16:19 | Report abuse | Reply
  50. Fawn

    I think it's going to be the Aspies – and the adult Aspies that suffer the most with this. For those people who were not diagnosed in childhood, and had to learn to cope on their own, the therapies they are now able to receive may and can (in my personal experience) mean the difference in having a job or being homeless. My father was diagnosed Aspie at 61 years old! He lost countless jobs because no one understood him and he takes people at their word. Now that he has a diagnosis, he is able to educate his co-workers and keep working.

    I also have a 12 year old Aspie. He is definately on the higher end of even being an Aspie. He can socialize a little – but it's mostly with children that have similar special needs. He's in 4 Pre-AP classes, band, and helps me run the local chess club. He's also started computer programming. He doesn't have a whole lot of obsessions, and can intellectually keep up with his college age peers. Emotionally though, he's only on par with an 8 year old. He has a lot of mood swings, and has not developed any kind of emotional coping.

    If the Aspie diagnosis is completely removed from the DSM – both my father and my son will suffer tremendously. I am only one person. There's no way I could support everyone if my Dad lost his job. Nor could I take all the time off work necessary to keep track of my older son's needs. So many people already fall through the cracks in so many other areas. Asperger's Syndrome is real, and the people diagnosed need the help. Don't let another portion of the world fall through the cracks. Everyone else will end up paying for it.

    January 25, 2012 at 17:56 | Report abuse | Reply
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