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 (297 Responses)
  1. Greg in Ohio

    I have a child that falls on the "spectrum" and although he isn't rocking back n fourth and has very capable speech, he clearly isn't "normal" or just "nerdy". The minimal funding he is currently receiving in the Indiana system is a joke. If it wasn't for my private insurance and pushing by my ex-wife and myself, my son would already be slipping through the cracks. It took us 3 years, 2 psychiatrist and numerous medication changes to get the school system and the state to recognize his condition. How about the group debating the DSM change take my son for a week without help and see what they think about their changes? My insurance would not cover what we are currently doing without a psychological analysis and diagnosis. Shame on them for even considering what they are about to do! They have no idea how this will affect peoples lives. All they are interested in is reducing the number of cases becasue they still have no idea what the root cause of this illness could be.

    January 24, 2012 at 15:49 | Report abuse | Reply
    • Tom

      Greg, You read my thoughts exactly. As a special education teacher serving students with severe emotional disturbances, it has been my observation over the last 17 years that placing a child "on the spectrum" opens doors for the parents of the child which may have stayed shut. I realize that our current healthcare system and state aid programs leave much to be desired for those families in need, but it is, at least, something. I agree with your summation that the root reason for the change in the DSM is to lower the overall number of children identified as being somewhere on the spectrum. Narrowing the criteria will decrease the number of children identified as being on the spectrum, but it will also shut previously opened doors to those families of children with needs. Respects

      January 24, 2012 at 16:15 | Report abuse |
    • Laurie

      I agree. Now children that need help will fall through the cracks. It would be great if the ones deciding this issue would actually live with someone like your son for a while before deciding an issue so important to the health and education of so many children and adults.

      January 24, 2012 at 16:34 | Report abuse |
    • Barbara

      I concur 100%. Too many children will be left behind when they could be helped. What would have happened to Temple Brandin if she did not receive the help she needed. More's the pity because the severely affected will be helped and the mild to moderate will be left to fend on their own. Quite a feat when you are already unable to cope adequately. They will be come permanent social outcasts. This is a tragedy and a heartache to these individuals and their families and a loss to socity as a whole.

      January 24, 2012 at 16:41 | Report abuse |

      Greg, I hope you remember this at the polls and when you pay your taxes. I don't know where your politics lie, but Republicans would like for you to have to beg a rich person to help you instead of receive help from the government. But funding for these extra services cost money, and that comes from taxes. I really hope that the definition doesn't get narrowed for your family's sake.

      January 24, 2012 at 16:45 | Report abuse |
    • Rachel

      Thank you. I am fighting the fight for my son who has Aspergers. I have no idea what his life would be like without the help he gets. He would have been expelled by now and probably be suffering much worse than he is. It is so heartbreaking. Just because he is on one end of the Spectrum does not mean he is less deserving of help so he can be a productive citizen.

      January 24, 2012 at 16:54 | Report abuse |
    • Thomas

      You could not be more correct in what you are saying. I have a son who was diagnosed with PDD-NOS at 18 months. The developmental pediatrician said he doesn't like to put a strict label at such a young age knew the signs and that early intervention is key. My son is now 7 and completely mainstreamed. In fact, we haven't even told his teacher about the diagnosis, because my wife is a special education teacher wanted to avoid the labels.

      My point is that the diagnosis was a crushing thing to accept as a parent. A part of me died that day. But, another part of me was reborn. I realized I may not be able to be the parent I dreamed about, but I needed to be the parent my son needed. That diagnosis, and the doors it opened, was one of the best things that every happened to me and my son. I couldn't imaging how much less of a life he would have if we would have had a "Whew" moment rather than being confronted with the truth.

      January 24, 2012 at 17:02 | Report abuse |
    • Bethany

      I agree...if making a diagnosis harder can be used to invalidate abnormal funtion it's foolish...in any case, the spectrum in and of itself MEANS there is a range...there are seemingly high-functioning individuals with azbergers in my family who have struggled in many areas of addiction and depression because they didn't know what was wrong with them or why they struggled in relationships...the explanation of the SPECTRUM informs and enlightens, helping people use the same helpful tools whether they are extreme or not...personally, it'd like to see what individuals who have experienced what this is like think of this decision...no amount of 'elite education' can trump personal pain or experience in validity of rational in a decision like this...furthermore the all or nothing mentality is dangerous, and would further marginalize those who 'make the cut'...psychiatrists are paid to enlighten a family on the condition of their child not answer a yes or no question...My quesition for them is- "What's your motivation? Don't pretend this is for the good of the child...Your purpose is to inform and help the family in understanding their child...the very fact that you are trying to eliminate or narrow the validity of children experiencing symptoms might just show how little you know what you are talking about...like "It doesn't fit our criteria, so let's eliminate it all together..."- sorry kid, we can't help you...your just depressed, you'll never be able to determine why becasue you don't make the cut, (sorry for the harshness but that's not helpful)...we live in a world where there are REASONS for things on ALL levels...and they need to be explored and explained...that is the beauty of it...there IS a reason

      January 24, 2012 at 17:08 | Report abuse |
    • pazke

      Pardon me, Greg, but aren't you suggesting that a decision like this be made based on your opinion or your situation rather than what's right for the vast majority? Your post and the responses you got come from people that know one end of it. This change will not be made without the input of thousands of physicians and therapists. Regardless of your situation, autism is being over diagnosed. This overdiagnosis is hindering research and treatment for severely affected children. Jumping to the autism conclusion can also prevent doctors from ruling out other metabolic and neurologic disorders that are treatable. Of course changing the definition of autism carried heavy consequences, but the motivation is really not to exclude anyone from getting help or to cut insurance costs. It's to help ensure that children are getting diagnosed and treated for the underlying cause of their symptoms and not just lumped into a diagnosis that to date has no cure.

      January 24, 2012 at 17:22 | Report abuse |
    • b4bigbang

      Or could his problems stem from the fact that he's from a broken home?

      January 24, 2012 at 18:07 | Report abuse |
    • ann

      @pazke are you suggesting that people like my nephew who completely lost all speech around the age of 2 and wouldn't look people in the eye at all should have been sent home for my sister to try to figure out by herself? Thankfully she got him into an early program and he is able to communicate quite well now and has improved in eye contact quite a bit as well as interaction with people. Do you have any idea how stressful it is to have a child that is not progressing with his peers and the doctor were to tell you, "nothing's going on here"? Come on! Without the earlier intervention he might still be completely not communicative! How could he have survived in society like that! It is still unknown how he will be able to progress going forward. So far it looks like he may able to be mainstreamed but maybe not. Time will tell. But without early intervention this wouldn't even be a possibility!

      January 24, 2012 at 18:10 | Report abuse |
    • Wendy

      I also have a child on the spectrum. WELL SAID!

      January 24, 2012 at 18:43 | Report abuse |
    • MaryLand

      b4bigbang, why didn't God give you a functioning cerebrum?

      January 24, 2012 at 18:54 | Report abuse |
  2. kyle

    I think making the diagnostic criteria more strict especially for autism would be a big help. These children don't need drugs and therapy, they need a book or pamphlet explaining the condition to the parents so they can take care of them.

    January 24, 2012 at 15:50 | Report abuse | Reply
    • Christine

      you know nothing about autism apparently...and when both parents are working full time, how are they supposed to do that? Please stop commenting on things that you don't know about. My son is on the spectrum and it takes a great team to teach him how to talk again and function in society again. Kyle be quiet.

      January 24, 2012 at 16:03 | Report abuse |
    • Terra

      Kyle all I can say is your opinion definitely comes from not understanding autism. I think you need a pamphlet!

      January 24, 2012 at 16:08 | Report abuse |
    • Russ

      Clearly you know nothing about the disease, and are speaking from a place of ignorance. Many kids that fall on the spectrum do not even require medications, but they do require a great deal of therapy. I too have a son on the spectrum, and while he has made great strides in the past year with his therapy, he still has a long way to go. The changing of the DSM codes will not erase the fact that my son is autistic just by the stroke of a pen, it will only make it more difficult to get him the help that he needs. Christine is right. Kyle, be silent.

      January 24, 2012 at 16:11 | Report abuse |
    • Len

      Christine ,as someone who taught artistic kids, I'm curious what you mean by 'again'. I have never met an autistic student who lost the abilities they once had. Your son may be misdiagnosed if you having those sort of issues....

      January 24, 2012 at 16:13 | Report abuse |
    • TF14901

      Kyle, you are a very ignorant, uneducated person on this subject. Do yourself and our children a favor. Go study up on Autism, actually take care of someone (supervised of course) with Autism, then come back and see if you can honestly say you still have the same opinion!!!!

      January 24, 2012 at 16:14 | Report abuse |
    • Concerned Parent

      Im sorry, but I have to agree with Kyle. Its not fair to put Aspies in the same category with Autism. Aspies shouldn't even be considered autistic. They can grow up to work regular jobs, get degrees, get married, and have kids. They need stricter guildlines with the diagnosis.

      January 24, 2012 at 16:17 | Report abuse |
    • Len

      I'm very sad seeing a remark like this. I recommend that you spent a week in an autistic classroom. Most of the kids on the severe end are worse than kids with down syndrome. You don't give a 'pamphlet' to parents with autism. As well, most parents are very knowledgeable about the disease since they had to FIGHT to get what serves they have for their children. I worked for years with 16 to 21 year olds with autism. They definitely allow you to see the world differently.

      January 24, 2012 at 16:17 | Report abuse |
    • RHB


      Therapy does not help the truly autistic. You failed in raising a well-adjusted child, that is your fault not his brains.

      January 24, 2012 at 16:17 | Report abuse |
    • Mom

      You have no idea, we had to fight for everything for my son. Insurance wouldn't pay for evaluations $2,000.00 a wack. Lawyers, numerous different doctors, we do not medicate our son because those medications don't work. He is 19 and a senior in H.S. He has mastered the electric guitar and wants to be in a band which I know he will do at some time in his life he probablly will never drive or get married and have children

      January 24, 2012 at 16:18 | Report abuse |
    • Len

      Disagree with concerned parent . It's very hard for adults with Asp. Syndrome to keep a job and regular life. The disorder rules their lives and they can't live a normal life. Those who are as minor as you are saying couldn't even be diagnosed on the current conditions for the syndrome.

      January 24, 2012 at 16:19 | Report abuse |
    • I.J

      You are abviously clueless and have no clue what you are talking about.

      January 24, 2012 at 16:20 | Report abuse |
    • Jeff

      i somewhat agree with Kyle, except for the pamphlet part. I have a child who may or may not be on "the spectrum", we are going through diagnostics and testing. This is an argument about who pays for the teaching and training of kids who have a life altering issue. I firmly believe that it is not the job of insurance companies to pay for "treatment" of children who many experts will agree show only a couple of minor traits of the spectrum. A change in parenting style is in my future.

      I understand the stress in the lives of parents of autistic children. You have it hard, but Kyle do doubt was not aiming at full blown autism, he was aiming at the situation I am in. I have purposely stayed away from the autism support organizations exactly because of the insane out-of-place defensiveness parents in these groups express.

      If you child is having intense therapy kyle's statement and this DSM disagreement does not apply to you.

      January 24, 2012 at 16:20 | Report abuse |
    • BETH

      Obviously changing the DSM doesn't change the reality of how our children are affected by Autism. Perhaps it makes more sense for the Psychiatric community to spend some more time on finding the cause of our children's disability. Perhaps even, a cure! We have all spent countless hours and dollars on trying to give our children a chance. The medical community has made millions off of our children, why not a little help! Insurance companies already are not covering multiple interventions, medications and diagnosis. You would think that the medical community would be more likely to support the individuals that it treats rather than the insurance companies, but you would think wrong. I guess we know what side there bread is buttered on.

      January 24, 2012 at 16:21 | Report abuse |
    • Russ

      @RHB – Please, enlighten me as to how a child of 4 can be seen as "not well adjusted", and how dare you tell me I failed at raising my child. You know nothing about me, or my child. From where do you get this seeming wealth of knowledge about Autism?

      January 24, 2012 at 16:25 | Report abuse |
    • Amanda

      Have you ever cared for an autistic child (on any part of the spectrum)? I have, and therapy and medication were a HUGE help. There isn't really a 'booklet' that can tell a family how to deal with autism. There are so many facets of autism that a simple little booklet isn't going to do much. Kyle, unless you have direct experience with an autistic child, would you kindly shut your cakehole?

      January 24, 2012 at 16:25 | Report abuse |
    • Scott

      @ Kyle... I have a son with Asperger's. I can tell you from YEARS of experience that a pamphlet would not be of any help. I have read more books than I can list, attended more conferences then I can remember, and spent hours upon hours with teachers, medical doctors, counselors, psychiatrists, psychologists and numerous other professionals in an attempt to create an educational and behavioral plan for him. And after all that time and commitment, it is an ever-changing plan. This does not even to begin to cover the amount of therapy that would not be covered by insurance if it were not for the autism diagnosis.

      @ Concerned Parent....Aspie's are autistic. They are part of the spectrum and share many of the same challenges and symptoms of those with severe autism. What a lot of people don't realize is there is a difference between autism and Autism Spectrum Disorders. Just because a person has an ASD does not mean they have sever autism. Severe autism is like a square and ASD is like a rectangle. A square is a rectangle, but not all rectangles are squares.

      January 24, 2012 at 16:26 | Report abuse |
    • jim

      Jeff, thank you for your comment. You seem to be the only commenter with a fully operating brain.

      January 24, 2012 at 16:30 | Report abuse |
    • RHB


      FYI, we're talking about autism spectrum disorders here. If you're child legimiately has autism (not aspbergers, not a spectrum disorder), then I'm sorry. However, I am a mental health professional with a Master's and I can assure you that unless your child has been diagnosed by someone who is not a psychologist you are paying into a scam the same way parent's have been paying into the ADD scam for years. People need to quit running for a diagnosis every time their child is outside the norm, and I say this as someone who's livelihood depends on that sort of thing.

      January 24, 2012 at 16:32 | Report abuse |
    • Calvin

      It's cute how almost all the responses to Kyle pretty much translate in "I hate you and your opinion because you agree with shutting off funding for the drugs that make my job as a parent easy." The DSM redefinition is in response to the "autism epidemic" that is only caused by the fact that the current definition is so obscure. Even if they redefinition isn't perfect, it's probably still a better alternative to the large amounts of money being dumped in to medication for children and adolescents whose problems are not strictly autism and would probably benefit better from alternative forms of treatment that don't involve feeding them poison. Telling Kyle to "be quiet" because he supports the DSM redefinition is the same as covering your ears to the idea that something besides drugs can be used to treat your child's symptoms.

      January 24, 2012 at 16:35 | Report abuse |
    • Harman

      Kyle, Respectfully, you need to adjust your opinion of how autism is treated. When my son was 18 months old he would not speak, even when he knew the words for what he wanted. He wouldn't make eye contact. He would spend long hours spinning, screaming, and/or jumping off furniture. Today he's 7 years old. He speaks, makes eye contact, and has general self control. In fact, the untrained eye might not immediately detect that he is autistic. Today he goes to his regular, public elementary school, with some autistic support, but he is more or less able to mainstream into the community– a goal just about any parent of autism hopes for. I shudder to think what my son's life would be like today if the services that helped him get so far were not there because they changed a chapter in a book. My family is infinitely fortunate. We caught autism early, and worked hard for over five years with a team of the most dedicated people I could ever imagine. It took a whole lot more than anyone could read in a pamphlet to help my son get where he is today. He has never needed drugs, but to say that therapy is unnecessary is grossly shortsighted. Respectfully, Harman.

      January 24, 2012 at 16:46 | Report abuse |
    • Serio

      To be fair, those of you touched closely by autism are assuming all autism is "just like" what you personally see, deal with. Autism has an ENORMOUS spectrum. I would argue the CEO of a multi-million dollar company with aspergers probably doesn't need special assistance.

      January 24, 2012 at 16:52 | Report abuse |
    • Jenna

      Kyle, here's your pamplet. Read carefully and look-up the words you don't understand.

      I am an middle school inclusion teacher of ASD students. It's my job help the students on my caseload succeed in their classes. My students are all on the autism spectrum. That means all of my students struggle to understand the increasingly confusing of the middle school world around them. All of my students have executive functioning disabilities because they are on the spectrum. Try learning any core academic subject with an executive function disorder. All of my students suffer from dibilitating anxiety because they are immersed in a world often times makes no sense to them. All of my students have sensory issues. All of my students have to go to class, be prepared, sit queitly – or interact – for their lessons. They have to go from one classroom with a new set of rules to another with a different set of rules to another and another. Call them nerds, call them different, call them whatever you want, but at the end of the day, if they don't recieve the support and services that I provide them, they will not make it through middle school.

      And I'm paid by a school district, not an insurance company. If the DSM changes the autism criterion, these very bright but extremely challenged students will potentially lose the services that they need to become educated members of society.

      January 24, 2012 at 16:57 | Report abuse |
    • Susan

      They have kids with high-functioning downs snydrom too....does that mean they don't have it? Kyle this kids learn to function in society with help – without it they maybe they wouldn't

      January 24, 2012 at 17:29 | Report abuse |
    • BC68

      While they need more than a pamphlet you are correct that the VAST majority of Autistic children do not need "medication". Unfortunately what they do need costs a lot more, and is a lot more difficult than just giving a magic pill. I do believe it should be much more than "the spectrum" that it currently is. It's being marginalized, and the DSM is only trying to create a billing code that the industry can put a drug into.

      And before any of you say I have no clue, my oldest son IS Autistic. We've been dealing with it since he was about 3 when my wife refused to accept "even Einstein learned to talk late". These kids need trained educational professional to help them and their families.

      January 24, 2012 at 17:36 | Report abuse |
    • Kelly

      You sir, are an idiot. A pamphlet?! If you know nothing about something than you should keep quite. You have obviously never spent any time with an autistic child or person, you would be ashamed of yourself for that callous response if you had. A change in the DSM like this will make it impossible for many parents and educators to ever get these children the help they need, and these children in need of help exist in astonishing numbers.

      January 24, 2012 at 17:37 | Report abuse |
    • Debbie

      Kyle, until you can walk a mile in one of these parents shoes, please do not comment. You have no idea of what goes on. I do. I fought for my son and thank God he is flourishing–College student, Army reservist.

      January 24, 2012 at 17:38 | Report abuse |
    • Chris K.

      Wow, clearly you have no children on the spectrum or that have special needs. I have two and their lives are so much better for the work that has been done on their behalf. Our son was nearly non-verbal at 4 and is now, at 11 almost at age level with regard to speech. My point is that the work/intervention/therapy/treatment is provided by a team of people involved from early intervention throughout childhood because these kids meet criteria for diagnosis early. This effort makes a huge difference in the quality of life that our children will have as adults. We can only create better outcomes through aggressive and constant interventions by a team of dedicated, well educated experts in their field. You start messing with criteria for eligibility and you will certainly create a situation where children with needs( whether they are hand-flapping and non-verbal or just socially awkward and unable to attend) will not have them met, they will grow up into adults who are less functional and more dependent on state or federal assistance. Investment will be made one way or another, why not make it earlier when it counts?

      A seminar or book could NEVER equal the work that is done with our kids. Our personal team consists of us/parents, a typical sibling, extended family, family friends, educators, pediatrician, psychologists, occupational/speech/behavioral/physical therapists. With the combined energies of ALL of these people working together our kids are better off.

      January 24, 2012 at 17:38 | Report abuse |
    • Sarah

      Yes! a pamphlet! That's what I needed when my son was screaming his head off in public because someone he didn't know touched him. That's what I needed when he vomited all over me his first day of preschool because he was so anxious. That's what I needed to be able to teach him to speak when he was 4 years old.

      Don't make me laugh. If you don't have an autistic child, you have no idea what we go through 24/7. I love my son more than anything, but without therapy and interventions by professionals for my son, he would not be able to function in a 'normal' environment. I doesn't matter how much I love him or attention I give him, he needs more help than just my husband and I can give and he is considered high functioning.

      January 24, 2012 at 17:47 | Report abuse |
    • laera

      when my son was small and diagnosed with autism, i decided to put my career on hold to take care of him. my mother (a retired teacher) was also around to help. we read pamphlets and books but no matter what we did and despite the full attention we gave my son, he didn't talk and continued to display the other signs of autism. only when we received guidance from the county and enrolled him in special education programs did we see some kind improvement. so, it's not a matter of "a book or pamphlet explaining the condition to the parents so they can take care of them" but rather a working partnership with qualified and experienced people. kyle, trust me, i wished and wished that there was a book or something that we could've used. but taking care of an autistic child goes beyond theory. taking care of an autistic child requires tremendous compassion, hard work, absolute dedication and a monumental amount of patience and understanding. i highly encourage you to observe a special ed class or a speech therapy session and you'll get an idea of what i'm saying.

      January 24, 2012 at 17:51 | Report abuse |
    • kevin

      I'm calling BS on RHB's claim to being a mental health professional with an advanced degree. His/her posts are confrontational, non-clinical, irrational, and they border on illiteracy. Okay RHB, tell us YOUR "specific specific" definition of autism, and be sure to cite appropriate peer-reviewed studies to back it up.

      January 24, 2012 at 17:51 | Report abuse |
    • Jabberwocky

      RHB, how is it that a "mental health professional" doesn't know how to use "you're" and "your" or "who's" and "whose" correctly? I call BS.

      January 24, 2012 at 17:53 | Report abuse |
    • Jabberwocky

      Kevin, you beat me to it. I agree. This is some troll.

      January 24, 2012 at 17:54 | Report abuse |
    • Kristina

      Kyle my son does not receive drugs and never has, but the hours of intensive therapy by line therapists trained specifically in applied behavioral analysis enabled him to read and function relatively normally in society. His public school could not provide that, as fine as they were, and I certainly do not have experience working with hundreds of children with incredibly differing abilities and needs. No parent has 40 hours a week for 4 years to devote specifically to one on one intensive training with only one of their perhaps multiple children, but that is what the State of Wisconsin (via WEAP) supplied for my son. Therapy is extraordinarily expensive. I pray to God they find the cause because the only thing more expensive than raising a special needs child is the drain on society when that child with the extraordinary needs that weren't met goes out into society as an aggressive, non-functional, hurt, and hurtful person.

      January 24, 2012 at 17:58 | Report abuse |
    • MIMI

      Kyle a child with a mild case of Autism may not have any problems at home. But when this child goes to school it is a completely different situation and the child may not be able to focus/handle a large class room. Deal with people they don't know telling them what to do. And when placed in a regular class room with out help they are lost and get marked as dumb and are overlooked or pushed aside. And by not giving them the help the need at a young age can make it worse as they get older and cost the insurance companies more in the long run.

      January 24, 2012 at 18:00 | Report abuse |
    • Betty

      Kyle, with that line of reasoning, if your child was diagnosed with a speech impairment, the insurance shouldnt have to pay for that either, right? Society as a whole will suffer if they throw out all of these young people who have the potential to impact our world one day. Who is going to help them when the parents arent around anymore?

      January 24, 2012 at 18:08 | Report abuse |
    • Bryon Daly

      All the people supporting excluding people previously diagnosed need to realize that those people really do need help, even if it is less help than some others do. This is like saying that if you're leg is broken, that's OK, but if your thumb is broken, no treatment for you. Each person should receive treatment accoding to his/her individual need. The needs of a person with Asperger's are generally far less than those of someone heavy autism and cannot speak, but both need and deserve help. And the idea that we should just stop counting the mild cases so that the numbers stop going up so much is preposterous.

      This isn't some boondoggle to get expensive unnecessary services and treatments for those who don't need it. An official diagnosis of Aspergers/autism can give schools a framework to better understand how to teach these children and what their special needs are. Sometimes even just some understanding and maybe some small accomodations will make a big difference, but without the official dignosis, those often aren't forthcoming. In my child's school, there were things the school could do to help him out, but they couldn't do them until we had the spectrum diagnosis.

      January 24, 2012 at 18:09 | Report abuse |
    • Koren

      Kyle – Really? A book or a pamphlet? I would have to guess you are not in the same situation. Is this book or pamphlet going to teach me the proper brushing teqniques? Or how to specofically deal with the melt downs from his frustration of not being able to communicate? Teach him how to speak,listen,have an attention span of more than 5 seconds, stop him from hitting himself? These things are done by therapists. People that have gone to school for years and continue education to learn new teqniques. A book or a pamphlet could possible be one of the most asinine things I've read in a long time.

      January 24, 2012 at 18:12 | Report abuse |
    • Squeezebox

      Kyle, I am a poster child for Ritalin. I went through 9 PSYCHIATRISTS before I was 9 years old. My mother seriously considered committing me to an asylum! Ritalin allowed me to calm down so that I could go to school and to therapy. The therapists used behavior modification therapy and got me off the Ritalin by the time I was 13. Don't tell me a simple booklet will change a child's behavior because my mom would have told you where to stick it!

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

      @Len I don't know where you have been, but speech regression happens in some autistic children. If you've ever read the book by Temple Grandin (someone with autism) she clearly discusses it in detail. My nephew's regression occurred around 2. He was speaking words and then quit talking all together. By the time a child makes it to kindergarten , they are generally passed the regression timeframe. Perhaps why you haven't encountered it? However, if you are teaching autistic children, I recommend you read the books by Temple Grandin. It might help you understand them better.

      January 24, 2012 at 18:17 | Report abuse |
  3. Mom

    I have a "rocking" non verbal 7 year old and I also have a "very high functioning" 5 year old. I change diapers, feed, and clothe my 7 year old...he needs much more help than my other son. It is amazing to me they are even con sided under the same "spectrum".

    January 24, 2012 at 16:07 | Report abuse | Reply
    • Mom

      And FYI, neither one of my boys has anything covered by our primary insurance. We pay out of pocket for our high functioning son to have therapy and he qualifies for special Ed due to anxiety and sensory issues...we did not mention autism in his eval. He is seeing great results with what we are doing. We also use supplements etc to facilitate their health. I personally think that there are just some bad people out there who are ruining things for the rest of us in this community. I overheard 3 mothers talking about how to make your child seem worse to get more services. That is absurd. I would never try to make my children and their symptoms seem more severe. I think this will help weed out many who are taking advantage.

      January 24, 2012 at 16:43 | Report abuse |
  4. Sunday

    I can understand why they want to change the DSM standard. Its due to the massive fraud going on in the "autism" diagnosis world.

    No one mentioned the "dirty" little secret of autism diagnosis. Therapist, schools, and the state will "demand" that you get an autism diagnosis, or risk not getting therapy or social security. I had a state case worker tell me that I need to "exaggerate my child's symptoms", and "dont tell them about my child's progress." They told me this so I could qualify for state services and hire state "habilitation workers" to work with my child 40 hours a week. Do the math, if you can coax 10,000 parents of delayed kids to get an "autism" diagnosis, you just boosted the state revenue. Keep also in mind that autism gets primary financing over down syndrome. So if your child has down syndrome, they may be denied services, while a "autism and down sydrome diagnosis" will get you services.

    January 24, 2012 at 16:12 | Report abuse | Reply
    • TF14901

      Sunday, you obviously are a very ignorant, uneducated person on this subject as well. I will tell you the same thing I just told Kyle. Do yourself and our children a favor. Go study up on Autism, actually take care of someone (supervised of course) with Autism, then come back and see if you can honestly say you still have the same opinion!!!! By the way, Autism has less funding in the United States than any other "disease" yet, more of our children are Autistic than there are children with cancer 1 in 110 are Autistic. Even children with Autism who are on the high functioning end of the Autism spectrum need some kind of therapy at some point.

      January 24, 2012 at 16:20 | Report abuse |
  5. RHB

    Thank goodness. Autism spectrum disorders are garbage. I knew when they started have commercials about "1 in 20 children having autism" there was no freaking way. It is a VERY specific, VERY debilitating disease and people shouldn't be allowed to convince mental health professionals that something is wrong with their children because they don't fit in with what they consider normal.

    January 24, 2012 at 16:16 | Report abuse | Reply
    • TF14901

      Your an idiot

      January 24, 2012 at 16:21 | Report abuse |
    • Rebecca

      You have no idea what you are talking about. My almost 3 year old son is healthy, bright, but autistic. He is a joy. It is not a matter as you said earlier of not raising them right. HOW DARE YOU! My husband and I love our little boy more than anything. There is nothing wrong with him he just learns in a different way and without the THERAPISTS he would not be where he is today. It take patience, faith and love and nuturing along with the THERAPISTS to help him along. When he first started therapy he hated so many things now he is exploring the world around him. But his autistic side shows with the strict schedules and not adapting to change. Don't sit here and critize parents for poor "nuturing" it just goes to show how igorant you are.

      January 24, 2012 at 16:25 | Report abuse |
    • RHB

      Yah, you're right, THERE IS NOTHING WRONG WITH HIM. As in, he is not autistic. In what way did I attack him? Good God, he's three freaking years old. How did they even reach a diagnosis of a spectrum disorder? Autism is a SPECIFIC, SPECIFIC, SPECIFIC affliction of the manner in which the brain works. It is NOT a catch-all disorder.

      January 24, 2012 at 16:28 | Report abuse |
    • Laurie

      Really? You don't think a child of 3 may be diagnosed with anything – not autism, not developmentally delayed? Believe it or not, parents and doctors often can tell if something is not going right even before the age of 3, and thank goodness. If you don't think a child may be diagnosed at the age of 3, then I don't think there is any sense in arguing with you.

      January 24, 2012 at 16:45 | Report abuse |
    • VoiceOfReason

      Go troll somewhere else.


      January 24, 2012 at 16:57 | Report abuse |
    • Jabberwocky

      RHB, you're no professional of any kind. I suspect you're a nut who posts on these boards frequently, using a different name every time. Stop doing this. You are doing a disservice to people here.

      January 24, 2012 at 17:57 | Report abuse |
    • Violet

      @RHB, are you sure you have Master's and in medical profession? Maybe time to brush up on your knowledge, since your posts sound like from somebody who studied autism by the movie "Rain Man"

      January 24, 2012 at 18:06 | Report abuse |
    • laera

      So is it "normal" for a child who is 4 years old, not talking, crying and screaming constantly, banging his head in the wall, doesn't look at you, lining up his toys/things in a straight line, staring off into space, staring at his fingers all day, freaking out over loud/sudden noises to list a few, doesn't want to be shown affection, and, oh, let's not forget, no social skills?

      January 24, 2012 at 18:08 | Report abuse |
    • Nelson

      I like how the person calling you an idiot can't get the right "YOU'RE" in a comment. I agree that autism is completely over-diagnosed. There are people that do have autism, and they need help. However, if a kid does not like to talk much or go to parties or have too many friends, that child does NOT need to be called autistic. And before any of you complain that I need to spend time with autistic kits, my cousin has pretty severe Aspberger's syndrome. On top of that, even I am "on the spectrum" so no need to tell me what should qualify and what should not.

      For the record, I should not qualify to be in the same category as the people who do have actual autism.

      January 24, 2012 at 18:08 | Report abuse |
    • Jabberwocky

      Says you. You're not exactly an impartial judge of your own condition or anyone else's.

      January 24, 2012 at 18:18 | Report abuse |
    • Koren

      RHB – I think what you're saying is rediculous. So when my son (at 2 ) had no comprehension,no eye contact, if he was standing he was going in circles flapping his hands, when he would walk it was only on his tip toes. Not to mention being non-verbal which wasn't my main concern. Children speak when they want to. But when you say to your child "Where's Daddy?" and he has no response or reaction? I guess maybe you're right. I jumped the gun because he wasn't acting like the rest of the kids.I hope you aren't in the mental health field. You would be doing these children a great disservice.

      January 24, 2012 at 18:33 | Report abuse |
  6. Bec

    So because I have mild Asperger's, I no longer count as autistic even when I show characteristics of it. It's like with my arthritis; I had it and it was blatantly visible I did, but my blood never showed it, so I never received a real diagnosis.

    I think the best approach is something similar to a Kinsey scale, where they give you a decimal point from 1 to 10 and tell you where you stand on the spectrum. I don't stop being autistic or ADD because the label has changed.

    January 24, 2012 at 16:16 | Report abuse | Reply
    • RHB

      People can have "characteristics" of all SORTS of mental health problems. Because you're socially awkward DOESN'T mean you are autistic. Because you have mood swings doesn't mean you're bipolar. This list can go on and on. Psychology is completely subjective, and instead of convincing yourself you have a problem that you can blame your life's problems on maybe you should attempt to be an adult.

      January 24, 2012 at 16:20 | Report abuse |
    • Bec

      RHB, I have had three therapists tell me I'm an Aspie. I didn't come up with it on my own – I fit the criteria. I also have several other disabilities, physical and mental. None of this has stopped me- I have a Master's degree and I'm attempting to make something of my life. I don't blame my problems on Asperger's; I want people to understand me better so that I can manage life in a world that oftentimes doesn't make sense to me.

      You, RHB, need to quit picking on people who do have problems.

      January 24, 2012 at 16:27 | Report abuse |
    • MikeGCNY

      That kind of change I could agree with... Some sort of weighted scale based on the symptom and the severity of the symtom. My brother in law, is moderately high functioning, diagnosed with Austism, NOS. He doesn't understand money, loves disney movies, cares very little for age appropriate material, and will never be able to hold a job, even as a bagger at the local grocery store A coworker has a son with Aspergers. Now, my coworker's son can function in school, and is overall brilliant as a student. However, when a girl pinched his backside he nearly pushed her down a flight of stairs. (where most 16 year olds would see that as a flirtatous advance and consider asking the girl out on a date). That being said, the level of treatment my coworker's son needs is no where close to the same ammount as what my brother in law needs. By essentially eliminating the aspergers label and calling both autism spectrum, one of them is going to get hosed. Either my coworker will overpay to offset the needs of my brother in law, or my brother in law is not going to get the level of treatment he needs. DSM V as it stands, is more broken than DSM IV.

      January 24, 2012 at 16:51 | Report abuse |
  7. Regina

    Well, this interesting. I am a mother of two young men, one with Asperger's and the other with Autism. So I am wondering if the redefining of Autism is the Insurance companies idea or the Medical Professions. Remember Autism diagnosis raised significantly because I believe the Medical Profession choose to place every learning disabled child or difficult to handle child under the Autism spectrum. Now we have a population that is aging and requiring care that the insurance companies do not want to pay for. What about us for so many years have lived and loved those with "Autism Spectrum Disorder". I say to the medical profession and the insurance companies. GET RIGHT THIS TIME...........many of us depend on it.

    January 24, 2012 at 16:17 | Report abuse | Reply
  8. sfabl

    The author is avoiding a major issue here: the idea that autism (however you define it) is a PSYCHIATRIC disorder. The body of research showing the immunological, neurological, and genetic differences in children and adults with autism continues to grow. Autism has no business in the DSM at all. Its placement there is an artifact of Leo Kanner (one of the first to describe autism) being a psychologist, and later psychologists describing it as "infantile schizophrenia" (which is wrong), being caused by "refrigerator mothers," and needing to be treated by a psychoanalyst (also long disproven).

    January 24, 2012 at 16:18 | Report abuse | Reply
    • Jo Ann

      In all likelihood, most psychiatric disorders have multifactorial causes. The DSM includes all kinds of issues for which psychiatric intervention MAY be warranted. It includes dementia and learning disabilities, for example. Being included in the DSM is not am indication that the cause is believed to be bad parenting, or that psychoanalysis is the recommended treatment; indeed, most clinicians today would not recommend psychoanalysis for MOST of the diagnoses included in the manual. Using your logic, there is no reason to have a DSM at all, but that is a different debate.

      January 24, 2012 at 18:05 | Report abuse |
  9. Phil

    Not to detour from the topic but the narrow interests, extremely high intellect, and passion for only a few things in a way makes them an ideal employee (form a supply chain prespective). Of course these autistic people may not have the full-bodied/well-rounded experience in life but what a talent. Maybe we should embace this highly specialized skills instead of forcing them to be like everyone else. In a way it is like a super human power.

    January 24, 2012 at 16:18 | Report abuse | Reply
    • arsphidius

      Unfortunately, my son's narrow interests are Star Wars, South Park, and professional wrestling. He also has a severe speech impairment and dysgraphia, which means understanding his speech and written words is time consuming and difficult. He also has a stim where he paces almost constantly. Using a pedometer, we determined that he walks an average of 2.5 miles every day, just in our living room. What occupation do you recommend for him?

      January 24, 2012 at 17:47 | Report abuse |
    • hummmm

      @ arsphidius i would recommend the occupation of doing nothing all day while the able bodied care for him with our paycheck. what type of answer are you looking for here without insulting you?? it sounds like you want us to feel bad for you

      January 24, 2012 at 18:05 | Report abuse |
  10. KS

    This is a complete joke and is a shameless and completely transparent attempt by various medical associations to redesign the criteria to 1) Use the reduced "diagnosis" to deny that autism and PPD rates are increasing or are an epidemic 2) To be used by insurance companies to deny the necessary coverage/claims to the affected and 3) Deny social services to the flood of kids (80% of people with autism are under 31 per the IACC) who be become adults and be dependent on social services. So rather than address the issue of why, let's just redefine the criteria and sweep this whole mess under the rug.

    January 24, 2012 at 16:18 | Report abuse | Reply
    • RHB

      The sham is that there is an "autism spectrum" at all. Rates aren't exploding because psychiatric professionals have become better at their jobs, it's because they have discovered it's a cash cow in much the same way that ADD is. Quit medicating everything that's slight deviation of "normal" human behavior and we wouldn't have people desperately clinging to the idea that something is wrong with their children when a professional used subjective criteria to evaluate them in the first place.

      January 24, 2012 at 16:25 | Report abuse |
    • Biggerdawg

      It's obvious RHB has no Masters in anything. Unless Troll University counts. Ignore this fool. For those of us who are living it, clearly RHB hasn't a clue.

      January 24, 2012 at 17:57 | Report abuse |
    • Jabberwocky

      RHB, are you "Dietrich"? You sound just as nutty.

      January 24, 2012 at 17:59 | Report abuse |
    • MaryLand

      I think RHB has used up his time at the computer in the day room now.

      January 24, 2012 at 18:26 | Report abuse |
  11. Rebecca

    I have a almost 3 year old who was diagnosed with autism. His therapists believe he is on the high end scale. With the changes they are proposing he would not receive any therapy. My husband and I work with him every day but his therapists are so much more highly trained that without them we would be lost. Kyle you obviously don't have children. Please don't comment if you don't understand.

    January 24, 2012 at 16:19 | Report abuse | Reply
    • Atticus Finch

      Does private insurance cover treatment for children with autism? Just wondering because generally I am against the government funding anything – because normally when the government gets involoved prices and beuracracy go up and quality goes down.

      January 24, 2012 at 16:41 | Report abuse |
  12. G J Fruthaler, MD

    There are two questions being considered. First, a medical diagnosis. Second, an economic, insurance question as to how much help parents of affected children should receive. During my 60 years of experience the diagnosis has been expanded to include such a wide 'spectrum' that it is almost meaningless. Perhaps we should include in diagnosis a classification of 'needs financial help' or 'doesn't need such help'? That seems to be the crux of the matter.

    January 24, 2012 at 16:29 | Report abuse | Reply
  13. Pipy

    Oh yeah, sounds like they have a great plan for the new DSM, if you don't like the way the game is being played, change the rules, so it looks like you're winning (and the insurance companies don't have to pay out as much :).

    January 24, 2012 at 16:31 | Report abuse | Reply
  14. Sarah

    Autism is more than just a mental disorder. It's also an immune system and gastrointestinal issue. What "sfabl", "KS" and "Phil" have mentioned above is right on.

    January 24, 2012 at 16:32 | Report abuse | Reply
  15. Ken

    My son has autism. The rhetoric in this article and review won't change this-I wish it would. This is about Money and Insurance. I wish it wasn't and it was just about updating text books-but this change will lock people out of therapy and services and that is sad. Anyone with a family member in the spectrum regardless of where they falll want the best for that person and whatever help and service they can get to facilitate that truly helps and matters. I try to live a moral, middle of the road life, and I want that for my son-but I can't help but be cyncial and jaded on how we treat our underpriveledged, disabled, and generally disadvantaged people in our society. I wish we lived in a place where the money didnt matter and we helped those that needed it and cost was not a facor in that decision. I know this is just a post and my small rant and it means nothing and will change nothing. IT's just sad that is the way it is.

    January 24, 2012 at 16:35 | Report abuse | Reply
  16. Pam

    If the treatments were not so expensive (let's see...$25,000 to get children ABA therapy or $1,000 per week to train the parents in ABA therapy?)there would be no problem for insurance to cover it. WHY is it so expensive?

    All I can say is this, insurance needs to pay for it now and help these kids to have a better adult life or pay later in SSI funds and have the retirement age pushed up to 83!

    January 24, 2012 at 16:42 | Report abuse | Reply
  17. Hap

    RHB – ASD are garbage? Really? And you are an expert I am positively sure of. I'll tell you what is garbage. Being the parent of a child who is high functoning – meaning he can read and write and spell and do math. What he can't do is socialize, he's fixed and obsessed on certain items – like weather events. He's not able to understand socially acceptable behaviors or read social cues. And you may be one of those who says – these traits are obviously results of bad parenting – but I will tell you that when those things get in the way of being able to function in school and society and ARE NOT a result of poor parenting because I have countless Dr's therapists and teachers telling me so. What would you do to get your child help? What would you do to help that child be successful in school cause you know he has potential. After all he can speak and read so therefore there is nothing wrong with him by your standard – right? ASD is NOT very SPECIFIC. There is a difference between Aspergers and Autism – but both levels on the spectrum. Autism is NOT black and white. And its people like YOU who make it hard for people like my son to ever FIT into the "Norm" because you are the type of person to believe there IS a norm and everyone should be held to the same standard.

    January 24, 2012 at 16:44 | Report abuse | Reply
    • Emeljay

      I have one Aspie son and one who is considered normal by any standards. My parenting skills didn't change between them so to all of you who think it's due to parenting, you are part of the problem. My family is against medicating him and just need behavioral help to keep one from being kicked out of every daycare, every sports team, off every bus, etc. etc. etc. And he's considered a mild case of Aspergers. I have made it through the worst of it and I feel very sorry for those who are in the middle or beginning with NO HELP. Oh my.

      January 24, 2012 at 17:14 | Report abuse |
  18. Sunday

    autism rate changes whenever DSM is changed.


    January 24, 2012 at 16:44 | Report abuse | Reply
  19. Atticus Finch

    The problem with any and all social programs is that some people will abuse it – ask for treatment and not need it – while others who really need it can't get it.

    January 24, 2012 at 16:44 | Report abuse | Reply
    • Debbie

      That is not the problem with "social programs," that is the problem with criminals who should be prosecuted. This is a corporate big business issue–insurance companies want to stem the tide. They will come back on this earth as the low life roaches they are.

      January 24, 2012 at 17:45 | Report abuse |
  20. PP

    Kyle, I don't think you have any autistic child in your family otherwise you would have not written above comment. I completely agree with Greg. The children with spectrum needs help and it will get vanished with more strict criteria.

    January 24, 2012 at 16:46 | Report abuse | Reply
  21. Nophah Kingweigh

    Insurance companies have way too much at stake in the definitions which make up DSM. Follow the money, and I'd be surprised if some of the funds for development of the new DSM don't come from those blood sucking leeches running the insurance scam, er, I mean industry.

    January 24, 2012 at 16:49 | Report abuse | Reply
    • Debbie


      January 24, 2012 at 17:46 | Report abuse |

    I think there are two issues to deal with.
    1. If someone is "on the spectrum", they need to be diagnosed as such, and need to be able to receive extra help from outside sources, because this disease tears families apart and presents big challenges to educators.
    2. The children receiving extra help need a way not to be stigmatized by their peers, because the best way to help them grow up "normal" is for acceptance from kids their own age. As a former teacher, I've seen how kids with "autism" are just lumped together in a special classroom and have few ways of interacting in normal social ways because their peers also have autism.There's been great success when you educate ALL children about this condition so that they can understand each other.

    January 24, 2012 at 16:49 | Report abuse | Reply
    • Gitta

      You are a great mother. Thank you for poitsng these videos. My own son is severely Autistic and thank God for my inlaws who support us 10000%. People judge us also, and on occasion have mentioned group homes etc We love Jory and think of him as a blessing and NOT a burden. I wish these people would just mind their business. James is a beautiful young man, I can't wait to see more.ChristinaVA:F [1.9.14_1148]please wait...VA:F [1.9.14_1148](from 0 votes)

      May 24, 2012 at 06:12 | Report abuse |
  23. Spectrum Mom

    I also disagree with Kyle and with Len and with Concerned parent, and a few other of you too. So many people don't even realize there are five fully different types of autism, with many different symptoms and outcomes.

    First of all I have a son with PDD/NOS which is a type of autism. He ONLY received the extra help he needed in school because of his diagnosis (that I paid $3,500 to get). Because of that, he gets the extra time he needs to complete his tests, therefore earning the grades he is capable of. In the mean time, he has been getting the therapy, which has been monumental in his brain/body relationship development. He is getting better. And because of that I fully expect my son to be able to have a job and a marriage and everything any "normal" man will have. And yes, he will always be different, but has improved sooo much. So now he won't be a burden on society. Your are welcome tax payers.

    Not diagnosing the kids who are on the spectrum, but are not as severe, leaves them in this void of not getting the help they need in order to fulfill their full potential. I do pay for most of my child's therapy, but the extra support in school is key. He scores "exceeds" on his standardized tests, and he has two advanced classes.... but he'd be failing if he didn't get the extra time to take his tests.

    Regarding having skills and then losing them... yes that is possible. Many autistic kids speak at first, and then around 2 and a half years of age, quickly become non-verbal.

    January 24, 2012 at 16:51 | Report abuse | Reply
  24. Wendy

    I'd rather be the parent who got a diagnosis early, got appropriate help, and then was able to proudly say a few years later, my child no longer has a label!

    January 24, 2012 at 16:52 | Report abuse | Reply
  25. Anne

    The changes to the DSM-V have absolutely nothing to do with insurance companies. There is not some grand conspiracy to deny services. What it is meant to change is the fact that we have various terms to define the same thing. I have two children with autism spectrum disorder and they will continue to have it even with these changes. The program that my daughter was diagnosed under has truthfully been operating under these terms for years, as most professionals have known this was coming for at least two years. However, I will use the way it was explained to me by my son's doctor on the day he was diagnosed. I knew what I was getting into that day and I asked, "Well, what kind of autism does my son have? Does he have autistic disorder or Asperger's syndrome or pervasive developmental disorder?" The doctor sighed and said to me, "Look, you know what vanilla is. There are many different types of vanilla; vanilla, sweet cream, French vanilla, custard...it's all vanilla. It's all the same thing." What this is doing is taking all the confusing terms (especially PDD-NOS, which is the most useless definition ever, you might as well call it "autism but we don't want to upset the parents by saying autism") and grouping them all under the umbrella term autism spectrum disorder. The sky, I'm afraid, is not falling at this time.

    January 24, 2012 at 16:52 | Report abuse | Reply
    • Sasha

      Thanks for your eminently sensible posting. I am wondering if anyone else has encountered "services-driven diagnoses," that is, diagnoses given to children before age 2 or otherwise quite early explicitly to qualify those children for early intervention and free preschool even when these children do not clearly meet ASD criteria (generally PDD-NOS for this group). In states with very generous ASD-related services (admittedly, those are few and far between, but they do exist - e.g., NJ, MA) parents may be persuaded that a "provisional diagnosis" of PDD-NOS will allow their kids to have these wonderful services, which (as one pediatric neurologist said) "would be good for any child," without thinking about the long-term consequences of labeling their kids on the spectrum in the absence of any real basis for doing so. I know a kid who was given such a provisional diagnosis of PDD at 20 months and, even though he was later evaluated by a prominent clinic and determined NOT to be on the spectrum, at 5 he is still assumed by teachers, service providers, and anyone else who once knew of his PDD diagnosis to have an ASD. I wonder if he'll ever truly escape the enormous power of that label, which was attached to him for strategic reasons and without a sound basis. He has none of the social or communicative limitations of those with ASDs, only some physical awkwardness that comes from a motor delay.

      January 24, 2012 at 17:31 | Report abuse |
  26. VoiceOfReason

    As the parent of a kid with 'high-functioning' autism (ie, at first glance he appears perfectly normal, but he still has profound difficulties understanding the world), i have had to negotiate the endless labyrinth of insurance coverage, IEPs, diagnoses, etc. It is a web of red tape that seems designed to prevent any and all effective care.

    So the cynical side of me has to wonder:

    Which insurance group is sponsering these changes to the DSM? Follow the money and find out which administrators at the APA used to work for large health insurance groups. Or will be hired on as 'consultants' just after leaving the APA. The cost of treating autism is huge, and almost universally borne by health insurance providers. It is worth $$Billions$$ for them to have these changes made. If you think they dont have a hand in this – then you are burying your head in the sand.

    January 24, 2012 at 16:52 | Report abuse | Reply
  27. CAB

    I am a parent of an autistic child. I have no hope for a cure; medicine is ineffective. It is unfortunate that he will never be able to take care of himself. It is unfortunate that the entire family is pretty devastated. Having a family member with Autism is pretty traumatic. Please keep in mind when speaking to people about Autism that the many who have experienced it first hand are coping with trauma. In my humble opinion, focus needs to be on finding the root cause of this condition, eliminating it/preventing new autistic children, and finding a place in society where autistic people can be productive members of society. Our society as the non-autistic people have defined it is not a very good fit for people with mental disease.

    January 24, 2012 at 16:53 | Report abuse | Reply
  28. Owl

    I have an autistic son.. VERY close to the AS "line", High functioning, well aware of his condition and he can overcome much of his behavior now that he has been TAUGHT to use his brain to overcome what others see as his "issues". This didn't not come free, or cheap, or easily. It did come without medication. My heart goes out to all of you with the kids we love who have this condition in whatever form.
    As far as the 1 in 20 issue. Retards, mentally retarded, "slow" etc are no longer being dx'd as they have been placed "on the spectrum" It is my opinion that we do need to redefine it, and allow MORE funding, not less. We all have seen how far our kids come with help. Many of our high functioning kids WILL be productive members of society because of the time, effort and expertise we have poured into them. If we lose that funding, and they become non-functioning adults, how is that helping society long term? won't the cost to the "state" be higher in the end because we refused to treat what would could in their formative years? This is a classic issue of treat the end result.. instead of prevent the disease. USE your local PACER center, or ARC, or Autism support groups and start writing our elected officials. Reclassification is FINE with me as long as they understand that ALL levels need assistance!

    January 24, 2012 at 16:58 | Report abuse | Reply
  29. betty ann

    FIrst, I have mild autism and my brother is autistic by any diagnostic standards.

    One thing I notice in the comments of parents is that they often seem very angry. Negative emotions like anger are the worst thing to telegraph to autistic children.
    Yes, having an autistic child is hard but try not to be so mad about it. My mother was mad all the time, my father was not. Both are dead. My brother and I miss our father but are relieved that our mother is gone....

    January 24, 2012 at 17:04 | Report abuse | Reply
    • Heather in SoCal

      I have Asperger's and am high-functioning. I'm sad that there are some who completely want to eradicate all autism, as many of us have gifts which are, in my opinion, inextricably linked to our condition. I'm a professional musician, and mysensitivities to sound and environment play directly into my musical abilities. As Temple Grandin said, "take away my autism and you take away my genius".

      January 24, 2012 at 18:46 | Report abuse |
  30. Jules

    RHB, what a bitter, cynical person you are. There is abuse in all professions. However, if you could meet my husband's family and our 8 1/2 year old son, you might actually believe in the existence of the spectrum. Or maybe you'd just label my son "a jerk" because he lacks the ability to empathize, for example. And before you go off on me, no, that isn't his only problem. He is definitely an Aspie–textbook definition. And, no, we aren't getting any assistance for him either. We are fortunate, unlike most families. But perhaps you'll just assume that I want to blame someone or something else for my lack of parenting skills. Before you do that, we are very strict and expect the best behavior from our children and also expect them to take responsibility for their own actions, unlike most parents with "normal" kids. Our younger son is a typical well-rounded, empathetic 5 year old. So take your bitterness and go get a new profession. Please.

    January 24, 2012 at 17:04 | Report abuse | Reply
  31. kevin

    Autism treatment at a young age is a great financial investment. If treated early, most autistic kids can grow up to lead very normal lives and contribute great things to society. But if left untreated, their behaviours become "locked in" and it's very difficult to overcome the problems later. I have a son who is autistic and a daughter who is not. They are great kids, but the boy needs help. He has difficulty with new situations and sensations. We have learned how to help him open up his world, and we work with professionals to help him realize his full potential. Fortunately no drugs are required, and none of the pros we've dealt with have ever offered drugs. Nor would we accept them because our son doesn't need drugs. He needs support. So we've learned what we can, and we actively adjust our parenting to help him expand his horizons. Autism isn't imaginary, it isn't poor parenting, and it isn't just personality differences. Why is RHB so angry about this?

    January 24, 2012 at 17:07 | Report abuse | Reply
    • Biggerdawg

      Because RHB has be outed as a nothing.

      January 24, 2012 at 17:59 | Report abuse |
    • MaryLand

      He's a nut.

      January 24, 2012 at 18:27 | Report abuse |
  32. SK

    Redefining Autism on the DSM would be like a two edged sword- on the one hand it will help contain the diagnosis, and reduce "overdiagnosis" on the other hand, it may mean children on the borderline may not get inputs thay need. I have a son on the spectrum- thankfully he is high functioning, so we did not have to get help, but required us to build many skils to parent him, and trying to understand how and why he behaves the way he does. Also, as he grew, the symptoms became less severe, and he is more or less well adjusted now. However, not all children are alike, and ALL children, Autistic, Aspergers, or anywhere on the spectrum would benefit from some kind of medicines, special ed, parenting guidance.....depending on their individual characteristics.
    I think a good idea would be to retain the present Autism Spectrum Disorder definitions and inclusions, but in the sections of "Diagnosis" and "Treatment" perhaps inputs could be given in terms of how it is diagnosed and what kinds of Interventions are needed- for some it may be medicines/ therapy, for some only therapy- or a specific therapy, for others special ed, for some others parental inputs, education and guidance. In any case, people with Autistic and Aspergers know that they need to do things differently than children who are not Autistic or Aspergers, and eliminating some of these from the definition will create confusion and parents, teachers, counselors will not get enough guidance to help these children

    January 24, 2012 at 17:07 | Report abuse | Reply
  33. Foster Mom in Illinois

    My 11-yr-old foster son is on the spectrum, too. I see a little rocking back and forth before his meds kicks in in the a.m., but he truly is high functioning. He's in regular classes in Jr. High and does pretty good. He's also been diagnosed with ODD and PDD. I believe he might become one of those who "falls through the cracks" if the DSM makes it more difficult to be diagnosed with autism. Although he does well in school, he often needs guidance and reminders to stay on task. He has poor social skills, but is MUCH better at this than when he first came into my care. He has also become more independent, in that he now chooses his own clothes each day, brushes his teeth by himself, but I doubt he could ever live 100% independently.
    If insurance won't cover his meds based on the DSM, I know I can't afford them, and I don't know if our state child protective services will pay for them either. Without his meds, he has no focus, is hyper, and defiant (I learned this when I took him shopping on a day he'd ran out of meds and was crawling around the floor of the department store).
    I don't mean to sound overly cynical, but it just seems this potential change in how to diagnosis boils down to one thing: money.

    January 24, 2012 at 17:08 | Report abuse | Reply
    • Suzanne

      I totally agree! They are saying that 1 out of every 100 children are on the spectrum. That means they are spending more money on them than they want. They are hurting everyone affeected with this just so they can save money. How about instead of hurting our disabled children, they make cut backs somewhere else? The government offices can handle a pay cut! But they don't even want to look at that. They would rather hurt our disabled children! How sick!!! How can anyone be so cruel?! How can they seriously even suggest this?!

      January 24, 2012 at 17:14 | Report abuse |
  34. Suzanne

    I have an 11 year old son with moderate Asperger's. He rocks back and forth. He didn't start speakinguntil he was 4. He clearly has signs. When we took him in for a re evaluation a month ago, we took him to a new doctor. The doctor was able to tell he had Asperger's by just having a conversation with him. He did the tests and then it, of course, came back with the same diagnoses as before. My son will never live alone. Or marry. Or have kids. He can't be in a regular classroom like other kids. I can't even take him to a parade. He will need support for the rest of his life. He's been in therapy since he was 5. He gets most of the help he needs right now. The only reason he's doing as well as he is, is because we've worked really hard at making him 'normal.' If they take this diagnoses away, they will be taking all this away from us. This will hurt not only us, but every one who is affected by autism. This will help NO ONE! Not a single person will ever benefit fom this. These kids will end up in our prisons when they grow up. And why?! Because the government wouldn't get them the help they need?!!! What's next? Where will tey draw the line?! Will they take away the ADD/ADHD diagnoses? What about the Schizophrenia diagnoses? Or Down's Syndrome? The reason these kids aren't all showing the same symptoms is because they aren't all the same kid! What is I said 'the only way you can prove you are a man is if you played sports in high schoo, watch sports on TV, grill out every Thursday evening,drive a truck, drink beer, and own a dog.' That's the only way you can prove you're a man. Anyone who doesn't have ALL of these characteristics, obviously isn't a man. How many of them would fail the test? I guess we don't have as many men in this country as I thought we had.

    January 24, 2012 at 17:09 | Report abuse | Reply
    • Patrick

      Suzanne, my sympathy is with you and your child, but what you describe sounds much more severe than moderate Asperger's syndrome. Is that the actual diagnosis your doctor gave your child?

      January 24, 2012 at 17:24 | Report abuse |
  35. Carey

    Wait a minute! Since when did we go back to believing that Autism was a psychiatric disorder? I thought we were way beyond that and have figured out that its MEDICAL! It's neurogical in nature, but it's hardly a MENTAL illness!

    January 24, 2012 at 17:17 | Report abuse | Reply
  36. David

    Dr. Daniel G. Amen may have answers and results for all of you with kids suffering from autism. Google it. There is always light at the end of the tunnel.

    January 24, 2012 at 17:18 | Report abuse | Reply
  37. Scott Fricano

    My son was diagnosed with PDD / Autism when he was three. Under the new way of thinking, he would not be able to receive the health assistance and financial assistance our family receives and this would have led to my son, because of financial issues that are my fault and not those of my child, would not have had the medical attention he has received to assist him with therapy as well as other forms of treatments. I understand some of you out there would say "find a better higher paying job" or "don't depend on the government" but my response is, I am not depending on assistance by choice, for I have earned close to a PhD/ Doctoral Degree but have just had a rough last few years. My Child and every child who is borderline autistic has the right to health care and assistance, resulting in a better life and to assist them in becoming better taxpaying citizens of our nation and society. My fear is that like in so many others ways this is nothing more than lobbyist groups attempting to expand the profitability of our insurance companies. If this is the case, then this changing of the definition of who is and who is not autistic MUST BE Stopped before children such as my boy, are prevented from a chance to be human, and later in life, productive members of our communities.
    Scott D. Fricano
    Summerville South Carolina

    January 24, 2012 at 17:19 | Report abuse | Reply
  38. Patrick

    I fall on the spectrum. I also grew up in the 60s and 70s, before anyone knew about ADD or Asperger's syndrome. I led a largely unhappy life; it didn't help that I had a mother who was enmeshing, controlling and bizarre - even a neurotypical child would have suffered in such an environment, but the loneliness and isolation I felt from a combination of having Asperger's and a dysfunctional and isolating family led to my being depressed most of my life, a lack of self-esteem and coping behaviors that just added to my isolation and loneliness. Having a diagnosis that gave me an explanation for my life experiences, letting me know that it wasn't my fault, that I couldn't have just "grown up" or been different as my mother would taunt me with, really helped me to come to terms with my life and my condition. I believe that kids with Asperger's syndrome need help to be able to live a happy life, and it would be a crime not to give them that help. Just because you're not sitting in a corner rocking and flapping your hands doesn't mean you aren't suffering from the effects of an autism spectrum disorder, and I do mean "suffering" in the sense of it being painful. I know. I've been there.

    January 24, 2012 at 17:20 | Report abuse | Reply
  39. Barnmaven

    I think what most parents of kids on the high functioning end of the spectrum fear is just what I do – loss of availability of services that help our children learn to deal with their perceptions of the world and control their behaviors so that they can lead relatively normal, functional lives and achieve a level of success and happiness. My son with autism has comorbid disorders that make functioning in the classroom difficult for him – sensory processing issues, severe anxiety, ADHD. Medication currently helps him actually participate in class rather than curl up in a ball on the floor all day (as he did most of last year). I am not opposed to the DSM redefining the criteria so long as it means that my child still qualifies for his IEP and medical care and behavior therapy – all of which without he would not be able to attend a public school. I'm far from wealthy, so without our medical insurance and the assistance from the school district life for us could quickly become disastrous. Ultimately I care less about my own comfort than I do about seeing that my son has all the tools he needs to launch successfully into adulthood.

    January 24, 2012 at 17:20 | Report abuse | Reply
  40. Jo Ann

    Much of this discussion reminds me of the controversy regarding physical therapy for orthopedic issues. After surgery a few years ago, my MD prescribed PT 3X/week for six weeks, at significant expense. The first two sessions were very useful in helping me give up crutches and normalize my gait; after that, I felt like I was paying someone to just watch while I did the same exercises I was doing at home. While I am certain some people really need PT, in my situation, I and my insurance company paid for unnecessary services. In the same way, I think we need to assess whether – and how much – treatment is really needed for those on the autism spectrum. For at least some of those with milder symptoms, would not some occasional consulting/coaching with the teachers and parents meet the child's needs just as well as more intensive treatment?

    January 24, 2012 at 17:21 | Report abuse | Reply
  41. Jennifer M

    I honestly think that folks who have no direct experience with an autistic child(ren) should just be quiet because you are ignorant to the issues associated with being autistic. How can someone take a glimpse at a child for a few minutes and make an assessment of what they need? You can't so go sit down somewhere.

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

      Well said Jennifer!!!

      January 24, 2012 at 17:50 | Report abuse |
  42. HFA, ASD, or Aspbergers... the name doesn't change his life, assistance could.

    My son can read, he can write, he can at times be very reasonable and intelligent. He gets through most days. He is also "on the spectrum". We fight for every single little accommodation for him. He doesn't get 'services'. The school gets some small amount for his participation in 'special ed'. The amount they get, as well as the 'services' we get is laughable. No one is writing us a check for therapy of any kind. Any one that blames 'bad parenting' for the behaviors of kids on the spectrum really are just clueless. Spend a day reminding a teenager that they must wash, not pick their nose, and wipe the food off of their face or others will think they are weird. Knowing that you have been repeating those same things, and the reasons for it for YEARS. Then watch that same child hit overload at the end of the day and watch them spinning and jumping and pacing... and realize they are not 5, but 15... and try an imagine how that child is going to survive in the world that doesn't recognize him as disabled....

    January 24, 2012 at 17:28 | Report abuse | Reply
  43. Steve

    My son is 11 and he is non-verbal. Though we have all tried and we continue to try...we have not been able to reach him. I hope this proposal does go through because the money saved could go to those who truly need it. So before you rant about the spectrum...just think how you'd feel if your son couldn't speak.

    January 24, 2012 at 17:34 | Report abuse | Reply
    • trina

      Steve- think about how you would cope if your child had the chance to speak with therapy, but the funding were cut and you couldn't afford it. All hope of improvement gone, just because somebody doesn't want to pay for it.

      January 24, 2012 at 18:07 | Report abuse |
    • Michelle

      @Steve – I'm sorry for your son's struggles. My was non-verbal until he was 4, almost 5th birthday. He was considered "classic" autism and now is high-functioning due to therapy. Understand when I say, I have fought and lost services due to resources – when he was at his worst and doing better. However, I don't understand wishing other childern with similiar problems less help. I would never wish these struggles on other parents. We need to stand together.

      January 24, 2012 at 18:10 | Report abuse |
    • Steve

      Trina and Michelle...sorry... I clicked "Report abuse"...I thought I was replying. Anyway...Though I'm not directing this concept at you or anyone...it's more of a general thing I've faced for the past 11 years. What I'm attempting to convey is that it is obvious that there is only so much money. And there are many things spend it on. Everyone wants the best for their child and I fault no one at doing so. My complaint is that over the years I've seen services cut and cut and cut....for a boy who cannot talk. Michelle thanks for your condolences...you probably have some idea of how we feel....though ours has been going on for 11 years and may last a lifetime.

      January 24, 2012 at 18:29 | Report abuse |
    • MaryLand

      This is the crux of the problem. There is only so much money to go around. Unless taxes are raised, that won't change. And no one wants to pay more for services. Many people are stretched so thin by this economic slump they can't pay more.

      There is no easy solution.

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


      Your few sentences have impacted me greatly. My son was non-verbal for the first five years of his life. He is also eleven. You are right; I cannot begin to imagine how you must feel. Please read a recent article regarding the impact apps have had on some children with severe autism. You can find it in the Health section of BBC News at the following:


      You are in my thoughts.

      January 24, 2012 at 22:31 | Report abuse |
    • Ramona

      Me again. I found the link to the app...


      January 24, 2012 at 22:41 | Report abuse |
  44. biochemist23

    Where will my 4 year old son with PDD be left after they make this change? Will he still be able to go to a special school where they teach him things that comes naturally to other 4 year olds? Will he still get his speech therapy so that maybe one day he can talk normally? The idea about what they are going to do scares me for my sons sake.

    January 24, 2012 at 17:40 | Report abuse | Reply
  45. biochemist23

    HEY STEVE just because my child is on the mild side instead of the extreme side doesn't make him any less important and doesn't mean that he doesn't deserve a chance to get better just like the children with extreme autism. SHAME ON YOU!

    January 24, 2012 at 17:43 | Report abuse | Reply
    • Steve

      Has your son ever said "I love you"? Or that he was thirsty? or hungry? or that he hurt his knee? or he wants to go outside? or that he likes the color of the sky? You don't know what this feels like. I'd give anything in the world for my son to have a mild form of autism.

      January 24, 2012 at 17:52 | Report abuse |
  46. Cynthia

    Mildly affected children who have access to services such as speech therapy, OT, Hippo Therapy, etc., can often go onto leading productive working lives, even professions. Changing the definition will mean that many who get services, will no longer be able to access services. Without services, many will end up on Social Security, or dependent on families or worse because they will not be able to rise to the level required to function in our society. Making this change may save up front medical costs, but in turn, it will definitely increase social costs and will diminish the quality of life for many.

    January 24, 2012 at 17:47 | Report abuse | Reply
  47. Jim

    As a grandfther whose grandson is in the process of being tested for autism, I empathize with families who have a child who exhibits the traits associated with autism, whether the traits are slight or severe. Some posters have heartlessly disparaged the conflicting emotions that all parents have when their child does not follow the usual path of development. These posters need to ask themselves if their lack of kindness is also a trait of an unhelathy personality.

    Whether a child actually has autism is in one way less important than whether parents can find the support and instruction that they need to understand what they and their child face and how best to move forward. And whether we like it or not, that means turning to men and women who have dedicated years of learning to understand what is acceptable child developement that can be guided by the parents and what is development that requires, at least at first, the help of specialists on a weekly or even daily basis.

    There are going to be children, and adults, who need help and won't get enough of it, or even no help. To elaborate on the point was made earlier about families with both parents working outside of the home, this means that care for children falls to others who are not family and the level of that care usually depends directly on the parents' income. The real question is how to help parents effectively meet this challenge. The current system is not great, but in a time when the average family's income is either static or declining, any help is better than nothing. Cutting parents off from support without helping develop alternatives is callous at best, cruel at worst. Besides, for those who minimize the impact a disability has, are you sorry you don't have a similar disability yourself?

    January 24, 2012 at 17:48 | Report abuse | Reply
  48. Violet

    The diagnosis of autism opens a lot of doors at schools for special needs kids. My sister has two kids on the autism spectrum. Her oldest has high functioning Aspergers. He is very smart but the diagnosis lead to a 504 plan with the school and made sure school administrators give him the help he needs. Without that- he probably would have become the odd kid in school that's very smart but drops out. Now he's on track to go to college. Her youngest son has full blown autism. He's not able to function in a normal classroom, he likely will need help all his life. There's really no helping him become a functioning member of society. Honestly, much of the help is just helping his family cope.

    January 24, 2012 at 18:04 | Report abuse | Reply
  49. Squeezebox

    I think that until proven otherwise, Asperger's should not be lumped into Autism, but given its' own criteria and treatment. Aspies are more functional than Autistics. Aspies do need treatment, but it needs to be focused on social interaction. Autistics need more intensive treatment. Autism has a stigma that keeps Aspies from getting the help they really need. I think I was misdiagnosed as a child because my mother absolutely would not accept the idea of me having it because I could talk.

    January 24, 2012 at 18:07 | Report abuse | Reply
  50. Ann Aspie

    As someone who is clearly an aspie, but was never diagnosed (we just figured it out a couple of years ago), I can see how this is an issue.

    However, in my case, I was fortunate enough to become involved in a self-development organization that basically taught me to completely compensate, without having the diagnoses.

    Also, in my case, the syndrome has actually been a real boon. It has given a very substantial career. To this day, I still miss many cues, and sometimes make an ass of myself, but, in the aggregate, I have to admit that the benefits far outweigh the downsides.

    Ironically, I think that the only folks that did realize my condition were therapists that I saw for decades. I think they deliberately hid the knowledge, and kept treating me for a condition that can't be cured; only compensated. When I found out, it was a freeing experience.

    January 24, 2012 at 18:11 | Report abuse | Reply
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