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 (317 Responses)
  1. Lollie

    As the grandmother of an Asperger child I agree that a line must not be drawn for diagnosis. Since the diagnosis his mother has found wonderful help for him because of her dedication in finding the available help as well as working tirelessly with him on everything from developing skills to helping him become more socialized. She is on top of diet and worked to keep him off the usually prescribed medications, using vitamins, herbs and other treatments, and all have helped him become a more happy, confident individual. If will always be difficult but if a proper diagnosis is not given, parents don't know what they're dealing with and will not be able to get the help that is actually needed, either because of ignorance or because insurance companies will not be obligated and state aid will not be made available. Now that we know and understand Aspergers we see that my grandson's father is obviously Aspergers but was never diagnosed. He cannot deal in relationships, cannot maintain a job for any length of time and is dependent on his overly-protective mother for just about everything. He never got help. We must not let this classification change. We need to be a society that is more tuned in to the needs of those who might seem "different" and develop love and compassion for all our fellow humans who are more like us than we care to admit.

    January 25, 2012 at 19:02 | Report abuse | Reply
  2. Karen

    I think this change will go either of two ways: (1) Now that the 'high-functioning' people are not being labeld as autistic, the medical professionals MAY be forced to actually take a harder medical, science-based look at what is going on with this perosn's brain/body. They may actually be treated as a person in need of real medical help. (2) OR they will be lost in a world which looks at this person as odd and peculiar but without hope of treatment. I believe there is an explanation for the dysfunction that people who are currently on the spectrum feel. Our son has PITANDs – some may have other disorders that are genetic or metobolic. Others may have fatty-acid oxidation issues, vaccine-injury, viral/bacterial infections from birth, etc. etc. The medical community will either look at their patient as a needing help or dismiss them as being 'odd'. Hard to say which choice will be made..

    January 25, 2012 at 20:17 | Report abuse | Reply
  3. Cheril

    My 7 year-old son falls in the in-between category. He has autistic symptoms but a recent visit with a psychologist who insists it is not pervasive enough for a diagnosis puts us into a tough spot. He clearly has challenges, but without a diagnosis, how can we help him? He has a modified school day of 3 1/2 hours but usually is still suspended/sent home early on average 2 days per week. So he needs help, but not enough to get a diagnosis. We are not well-off, and cannot afford many of the treatment options out there.

    What will happen to these kids? We will have an entire generation of kids who need at least behavioral therapy to function on a normal level. We are working with the school to teach my son manually about social skills such as personal boundaries, facial expressions, proper expression of emotions, classroom expectations... Things that my daughters have already begun to pick up on their own.

    The burden of teaching these "in-between" children will fall on our already strapped school systems.

    January 25, 2012 at 21:13 | Report abuse | Reply
  4. Jane

    I wrecked every aspect of my life to properly raise and educate my child, though I was a single parent with no outside support, because the medical and educational systems are so ill prepared to support children like this. I never took a penny of public aid and landed my child in the top university in the nation on a full ride–a social, funny, brilliant, good looking, and ethical young adult. If I had left him in day care and put him in public school when he was young, he never would have turned out so well. I endured years of criticism, only to see it magically turn into statements of how "lucky" I was to have a child like mine, followed by requests to help other parents make their kids the same way. This country is nuts for neglecting our brightest children and trying to make them like anyone else. I avoided a diagnosis for my child and public aid for me when raising him made making a living very difficult so that I could raise him according to his true needs. Now, my career, finances and health are wrecked. But, I did the right thing. It shouldn't have required me to do it alone. The resources simply weren't there, and I was unwilling to compromise my child's well being.

    January 26, 2012 at 03:12 | Report abuse | Reply
  5. Steven Reminick

    As a father of a severely autistic child, I think the boundary between Aspergers and Autism is clear. They have to do with language and language only. And by language I do not mean the utterance of nouns in order to get a certain item. I mean conversational English which most children achieve by age 3. (My son is 13 and cannot have any meaningful conversation).
    The Asperger’s child might misbehave or be socially awkward but typically has no problem having a conversation. My son cannot express anything more than a simple request, a single word, or a single memorized (Gestalt) phrase that gets him what he wants. Though he loves other children, he never will have friends (he doesn’t know how to play with them), never will play baseball, never will sit through a movie, never participate in the things you and I call life. He doesn’t understand the concepts of past, present, future. Without these building blocks, it must be difficult or impossible for him to think of the world the way you and I can. He is happy in a very small simple world. That is all. I often say ‘He is still in the garden’.
    The difference is simple: The Aspergers child can converse, understand conversation and participate in normal activities (with some help).
    The autistic child sadly cannot.

    January 26, 2012 at 11:48 | Report abuse | Reply
  6. Gregory Taylor

    The Amish don't suffer from autism so it is obviously something in our environment causing this condition. Our AMA (American Millionaires Assoc) seems focused on abolishing healthcare reform instead of finding the cause of scourges like this. We need to take back our health care from this greedy haughty bunch.

    January 26, 2012 at 11:55 | Report abuse | Reply
    • Katie

      The Amish do indeed have Autism in their populations. There are many recorded instances, and one study puts the ratio at 1 in 271.

      January 26, 2012 at 13:03 | Report abuse |
  7. Sandy Brady

    Let's change criteria so we can reduce the number of children diagnosed so we can reduce funding so we can reduce available services. That is what this is all about. As the mother of a high functioning teenager with autism, I am more than concerned. He is in the group that will be most effective by such changes. As he approaches adulthood, there are still so many questions about the level of independence he will reach. Now, there is even more question about what resources will be available to him if he is bumped off of the spectrum. No diagnosis...no services. Where does that leave him????

    January 26, 2012 at 12:07 | Report abuse | Reply
  8. mom of PDD NOS

    Insurance? Our insurance doesn't cover anythiing for my PDD/NOS – Autism diagnosed child. Many insurance companies already DO exclude treatments for kids like ours. I have spent about 10 grand out of pocket on testing... and private therapies. The ONLY place my child gets tax-payer funded help is in the school. Thank GOD for that, because he is a "gifted" child who just needs some extra time to complete assignments and tests. And do I feel guilty about getting the assistance he needs? H-E-double-toothpics NO! We pay taxes out the ying-yang... to support WIC, welfare, SSI cheaters... etc. We've paid out WAY more than we've benefited. We are getting assistance for a disability our child was born with, and he can't help... which is way more justifiable that getting assistance for having a baby you can't afford to raise, or sitting on welfare for years because you'd rather sit around and live off someone else's dollar than actually contribute to society. And guess what? Because my son is getting the help he needs in school, he WILL be a productive member of society in the future. So the investment now will pay dividends later.... and HE will pay his taxes rather than live off someone else.

    January 26, 2012 at 12:33 | Report abuse | Reply
    • Mother of a Different Rock

      I agree with you totally however there are insurances that do cover autism treatment in some states due to it becoming mandatory in a situation where the insurance is provided through employers who maintain 50 or more employees. However this does not include many of us who do not have business provided insurance because of the burden cost to small business owners. I feel that the redesign is for insurance once again to find loop holes and get out of what they are supposed to be paying same as now there are loop holes in home insurance due to hurricane expenses incurred over the past few years. If insurance companies can not afford the payouts they need to reduce some of their expenses and their employees and owners can give up their fine homes and cars. same as politicians and celeberaties. The reason our economy is in the situation it is in is because of over spending and it did not come from the middle class or working class poor because we can not afford luxuries to begin with.

      January 26, 2012 at 14:50 | Report abuse |
  9. Andy

    What is real important here is that Autism is a spectrum of disorders and it is important to understand that there are more and less severe forms of it. Very often the public is unaware that simple changes in diagnosis can have drastic social ramifications. For instance, the widely reported statistics of the rate of increase of autism spectrum disorders is at least partially due to the increase in diagnosis of several of the less severe forms as opposed to any real change in the disease. This fuels fear in the public and results in panic and distrust. Right or wrong, it is a factor. There is no denying the reality of Autism and the need for help for those parents taking care of these children.

    January 26, 2012 at 12:45 | Report abuse | Reply
  10. Tim

    My son's aunt who is an expert in developmental issues was convinced since my son was 3 that he had Asperger's. My approach was "Tough , you're going to man up and live to your full potential without any labels or nannysitting from the mental illness industry. At 15, the boy definitely has a "unique" style, but he's also a straight-A student (without apparent studying), wrestler, and excellent & fearless public speaker. I'm all for removing the "autism spectrum" label from kids that would be able to achieve highly if they weren't stuck with a status labeling them as a circus freak. In a similar vein, when the lad was 5, I also told the school district that they could take their ADHD screening and veiled suggestion of Ritalyn therapy and shove it where the sun don't shine. We never looked back.

    January 26, 2012 at 17:40 | Report abuse | Reply
  11. Cnrs Mom

    LOL, I totally think we need to have a sit in with these folks trying to rewrite the DSM, so they can see, feel and have to live in the moment with this traumatic disorder, if only for a little while, as parents, we suffer along with our children trying to find a way to help them daily to cope. And to the other parent who mentioned the rages! OMG!! HOW DID I FORGET 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 and the help they need, 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 for them to ever completely assimilate, function, or even possibly be self sufficient, and live a normal life in the mainstream world.

    January 26, 2012 at 23:01 | Report abuse | Reply
  12. Cindy Quinn

    I was very surprised by the proposed change in diagnoses. Fortunately, for me, both of my children on the high functioning scale of the autism spectrum are very well. One is 16 and the other 18. They would not be where they are today without the diagnoses they were given when the diagnosis of autism spectrum disorder was very new. We all went through some very difficult times with school and neighbors. I home schooled for some time because I was wasting too much time with the schools. Thank God I was able to do that, as many are working outside the home. I believe that this is all leading toward the inevitable, that autism is the new "norm."

    January 29, 2012 at 01:49 | Report abuse | Reply
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    I have a 28 month old daughter dx'd with mtaerdoe autism, global delays, non-verbal and will be dx'd with dyspraxia when she turns 3. She started mild SIB about 9 months ago and so far we do the chewy tube and vibrating toothbrush to redirect her. I have watched some of your videos since I first suspected autism and you have shown so much courage and strength. I think you are the most awesome mom and you are so beyond calm, Jamey is such a handsome young man.I truly thank you for sharing.VA:F [1.9.15_1155]please wait...VA:F [1.9.15_1155](from 0 votes)

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  19. JanName*

    I am not in favor of this change. You don't have to wear the diagnosis on your sleeve or put it on your garage door. However, these kids will not get the help they need now. Sounds like a monetary thing to me. Does Government and the insurance companies not want to pay for it? If it was another disease like cancer or diabetes,it would be seen as something that needed to be treated. Lord help all of society, our kids deserve the treatment that they need in order to be more functional.

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