Redefining Autism: How it Could Change Treatment and Policy

Friday, January 20, 2012

The Diagnostic Statistical Manual (DSM) is a dictionary that defines and classifies all mental health disorders. First published in 1952, the DSM is used by everyone from clinicians to pharmaceutical companies to policy makers. Since its inception, the DSM has been revised only four times — one such occasion was in 1980 when homosexuality was no longer defined as a mental disorder. In the fifth edition, another big change may come to the DSM. Autism is up for a redefinition which could potentially reduce the number of people considered "autistic" by half.

Benedict Carey is a science reporter for The New York Times, whose coverage of this story can be read in today’s edition. Temple Grandin is professor of animal science at Colorado State University. She is the author of  “The Way I See It: A Personal Look at Autism and Asperger’s" in which she describes autism through her personal experience.

John Gilmore is the parent of an autistic son. He shares his thoughts on how a new definition of autism could change life for her and her son.


Benedict Carey, John Gilmore and Temple Grandin

Produced by:

Kristen Meinzer

Comments [16]


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Mar. 07 2013 04:29 AM

Where were these Ash Whole psychotic doctors with definitions when this tsunami of children being poisoned autistic began twenty or so years ago.
They are twenty years or so late to the party! Too many wheels have been put into motion without these bimbo’s inputs to start redefining at this late date. My guess is that they smell that “money can be made” and they want to join to share the spoils of the useless cottage industries that has been built all sucking on the hind teat while the parents are struggling by trial and error developing treatment protocols on their own!!!!

Jan. 22 2012 12:08 AM
Erin from Ohio

As a parent who had to go through multiple doctors expanding the current Autism definition to try to diagnosis their child, I am thankful for the revisions. I watched these doctors struggle to explain how my child met the defintion of Autism, finally throwing up their hands and just admitting that the reason they were giving the defition was because other kids they had seen with similiar type behaviors were diagnosed autistic.

My child is not autistic. My child was finally diagnosed with MERLD (mixed expressive receptive speech delay), ADHD-HI, anxiety, and CAPD (central auditory processing disorder). He did not make eye contact because he was lip reading. He repeated things he had heard becuase his auditory short term memory was almost non-existant and it was the only way he could process what he was hearing. The list went on. Many of the doctors refused to look beyond autism and continued to expand and squish the current definiton to try to make him fit.

Jan. 21 2012 06:45 PM
Stephanie from va

The only reason why they want to "redifine Autism" is simple.... The number of autistic children have become so high, that the public is now aware that there is no way that this could be genetic, because you cannot have a genetic epidmeic! So they have to find a way to cut the numbers down, to make it look like these are rare cases and vaccines couldn't possibly becausing AUTISM!!!!!!!
Such crap because no matter what end of the spectrum you,adhd,aspergers,touretts, high functioning to low functioning are all forms of autism and they are all considered to be on the spectrum the "Autistic" spectrum. Parents better wake up!

Jan. 21 2012 04:36 PM

My son was diagnosed at 18 months with ADHD (3 second attention span)required no sleep and cried every time you took him out of his environment. Common with autistic characteristics. He made no eye contact nor would he act appropriately when you would coo at him or play with him. He can not always answer simple questions and has a extremely high tolerance for pain. At 18 months once the diagnosis was made and confirmed by many doctors and test, (braining mapping and brain scans, EEG along with constant observed behavior by Psychiatrist, Neurologist, social workers (specializing in that field) One doctor told me he should just be institutionalized. When the EEG was performed it took 5, yes 5, sedation shots in order to administer the test. When he was awakened it was as if he was never even sedated. Walked right across the hall for the Doctor to give us the results and our son was already checking out and disturbing everything in the doctors office. The doctor could not believe it. I knew I would have to work hard day and night to see if I could make a difference in his life and the quality of his life. He would not interact with other children his own age and was kicked out of part time day care programs due to his disruptive behaviors. Disruptive behaviors which he had little or no control. He still has that problem at 32 years of age. So much so particular attention had to be paid to his physical well being to make sure nothing drastic was going on health wise. I took him to the doctor after noticing he had a fever and found he had a bad ear infection. The doctor told me he should have been screaming from pain caused by that ear infection. Time has changed the diagnosis terms to include Asperger Autism from Autistic Characteristics. The terminology has changed but not the symptoms. At that time it was important not to label someone with any form of Autism. It was not the diagnosis I was concerned with, it was the treatment that would help him. We immediately placed him in the Easter Seals Demonstration School in Miami Florida. Early intervention.He will be 32 years old this year. I did call and speak with Temple Grandin (she was kind enough to return my call) many years ago and she told me my son had other issues along with the Asperger Autism. True he does. He is also diagnosed Bi-Polar and Obsessive Compulsive disorder. The DSM may want to reclassify the meaning of anyone diagnosed in the Autism Spectrum because of the shortfall of funding. I believe it is an environmental issue that is causing the increase of children diagnosed within the Autism Spectrum and that is what should be researched. Asperger Autism affects daily living skills as well as social skills.Still he does not interact with others well.

Jan. 21 2012 11:51 AM
Bonnie Jean Smith from Minneapolis,MN

“There is no Special Ed department in the real world and I believe we need to have our kids accept responsibility for their own behavior and the schools need to focus on subject matter and stop labeling. I don't think drugging our kids is the way to go. Getting testing for tangible, not subjective, issues, such as CAPD, would be more beneficial along with reducing the size of the classroom to a more manageable level for the teacher and to reduce noise. And stop teaching in trailers.
We are not accepting our kids 'as is' but treating them as abnormal. We aren't teaching our kids that they hold the key to their own behavior but that acting out is an unfortunate byproduct of their 'condition'.”

I have two young adults that learn on the Autism Spectrum. I never treated them as “abnormal’ at home, I taught them the same ethics , morals [ right from wrong] and responsibilities that I taught my other children. Yes it might have taken them longer to learn but I did not expect the schools to do my job as a parent. My children were never placed in a program they were in regular classes with supports as the law states. They are not dangerous individuals and they have great manners. Education begins at home. I did not have low expectations for my children as they were growing up if they had unwelcomed behavior in public I did not get “embarrassed” by it I used the behavior at that moment as a teaching moment. My children learned not to do what they had done again. I call what I did natural ABA, which to me is what parents do naturally with all of their children. It is not something you take them to a “clinic” to teach. They learned intheir natural environment. When they were young and in elementary school yes they did have behavior that was unwelcomed but this was due to either sensory needs or anxiety because they did not understand the abstract language that was being used. I learned how to teach them and I taught the school staff how I taught my sons. I did not expect the schools to do my job.
All this to say regardless of unwelcomed behavior if the DSM had been changed when they were younger some professional in their silo of education would have labeled them mental health when their disability is neurological totally different. If they had been given psychotropic medication the medication would have not only hurt them physically but would have caused them to act as though they had a mental illness and they never would be able to function in society as productive members.

Jan. 21 2012 10:07 AM

I left a comment that was completed by Randy of Cedar Falls. In order to get the full picture the post by Paula of Cedar Falls should be posted as well, if possible. Thank you

Jan. 20 2012 10:31 PM
Anne McElroy Dachel from Chippewa Falls, WI

One has to wonder why officials who still can't tell us the cause of autism, the cure for it, or how to prevent it, seem satisfied to play with the definition. The result of redefining autism is going to do nothing to tell us why a once rare disorder is now so common that everyone knows someone with an affected child. No one has ever found a comparable rate among adults. Whenever we read about autism, it's always children with autism.

Benedict Carey should realize that a child with "social awkwardness" would hardly have qualified for an autism diagnosis under the old DSM. Pretending that the soaring increase in autism is because kids were misdiagnosed in the past and experts want to get it right is absurd.

Many people want the autism epidemic to somehow go away. We're on the brink of a generation of autistic children aging into adulthood where they'll become dependent on the taxpayers for their support and care. This looms over this country like a tsunami. Thomas Insel head of the Interagency Autism Coordinating Committee created by Congress to deal with autism has said that 80 percent of Americans with autism are under the age of 18. He warned that we're going to have to prepare for a million adults "who may be in need of significant care." This is the real truth about autism and there are many people who want to deny the epidemic. Regardless of how they define it, they'll never make this generation of disabled Americans disappear.

Anne Dachel, Media editor: Age of Autism

Jan. 20 2012 10:04 PM
shell from NJ

Time to stay away from any expert who is in favor of the DSM-5 which is a complete Mockery of the safety health and well being for children on the Spectrum. Look at what was accomplished on the internet with a blackout. Let the psychiatric writers who are changing the diagnosis know of your disapproval. Stay away from doctors who want to capitalize on this.

Jan. 20 2012 08:25 PM
Denise Clark

I wonder what effect this would have on Ricky. I'm not sure he would meet the new criteria for autism. I'm not saying I wouldn't like to say, " oh no, he's not autistic any more." But my son needs the special education in order to keep excelling the way that he is. He will be at a great disadvantage if they take that diagnosis away from him. I'm afraid they will decrease his hours at school, or his speech therapy???? What then would he be labeled? If not autism, than what does he have? What is his new diagnosis? This is annoying, to say the least. I've spent the last two years fighting the autism, now I have to fight for it. This will be bad for so many... infants, toddlers, children, teens, young adults, adults. What are they thinking? It's hard enough as it is, why make it worse? You can't just redefine autism, it is what it is. It comes in many forms, it's a spectrum disorder, DUH!!! You don't need to be delayed from A to Z, you're just on the spectrum, you can be mildly delayed, or severely, but all autistic kids deserve early intervention services, therapies, and education. I'm mad about this.

Jan. 20 2012 06:55 PM
Maurine Meleck from South Carolina

John Gilmore is exactly right. We will erase the last 20 years of forward movement in autism. If this new approach to autism goes through, there will be tens of thousands of children left out of services, insurance. I find it amazing that for the last 5 or more years we have heard from the autism naysayers that there has been no increase in the numbers and it is just better diagnosing. So now they can be properly diagnosed but they plan to stop diagnosing so many. I cannot help but wonder who benefits the most from this possible change. The naysayers that don't want to show there is a real increase in the numbers with autism? The drug companies that profit from psyche drugs? The government that will save money? The vaccine makers so they can keep pushing more vaccines on children? Politicians that refuse to help the autism community? The psychiatrists that can keep doing psyche pill business? Perhaps it's all of the above.
If they change the diagnostic terms for autism--it will be a tragic mistake.
Maurine Meleck
grandmother to 2 vaccine injured boys-one recovered.

Jan. 20 2012 04:12 PM
Randy from Cedar Falls, IA

People in the autism spectrum have repetitive behavior, they are exceptionally bright and excel in something. Something they are very interested and can OCD on that one particular subject, activity etc. Hopefully continued below.

He reviews games on line, writes articles about modern technology and is published on the net. If you have not lived with it you certainly do not know what it is like for the Asperger Autistic individual or the family.

It changes the entire structure of what could have been a "normal" family life. My constant work with him may have made some difference but no as much as much as I would have hoped and prayed for.

He continues to exhibit allot of the same behavior as he did when he was younger. He has progressed to one that equates to that of a 14 year old. Parents always want the best for their children and we sometimes have to be satisfied with the outcome. As long as we know he is happy,loved very much and is in a safe environment in a residential program that continues to work with him or his areas of low performance what else can we do? FL had absolutely no residential program that was for high functioning disabled. Just because he is high functioning in some areas he is low functioning in others. FL did have residential placements for low functioning mentally retarded or downs syndrome. We relocated to IA so he would have continued treatment and support and a more appropriate placement "home" knowing that we, his parents, will not always be around. He would be in a familiar environment making it easier for him to adapt when we have passed.

Jan. 20 2012 02:21 PM
Jaimee hoffman

Our son was evaluated and the questonaire which I was given wax the only reason she said yes he was autistic. The form said has he done any of the following in the past 3m. It had been 2.5m so I was honezt. Had wraparound out and they said within the first mins the professional had it wrong. For me to get him retestsd at 3. He did and that dr said he isnt autistic. He is still stuck w the label from the first eval I cant get rid of it. I believe they do get it wrong anx need to change their "books".

Jan. 20 2012 11:28 AM
Julie from Ridgeway SC

I have a 5 year old son diagnosed with autism. My husband and I carry private insurance on our son and our other children. We have applied for the TEFRA program. Our private insurance does not cover most of the places we need to take him (speech, occupational therapy, and developmental pediatritian). Some of these places do not accept private insurance, they only take medicaid. We can file the claim ourselves but our last bill for developmental ped. was $475, we filed the claim and have heard nothing, this was in August. We had to cancel our last appointment for the developmental ped. because we do not have $900 for the cost. I understand that for my son to have TEFRA private insurance will go up, mine will too. Yet of all the things I pay for out of my taxes and high private insurance really this is what they want to change!! My tax money and insurance premiums and copays goes to all those getting 120 pain pills a month and then selling them on the street so others can get high and this is what you want to change. Children with autism do not choose this yet you choose to take away aides for them. These aides can help them become functioning members of society, drawing paychecks so they can pay taxes! My son does not speak, I long for the day i hear his voice and this will not happen just because he wakes up one morning and decides to talk! It is going to take work. I fight having my son diagnosed, labled, etc. but it is a necessary evil, without it I cannot afford help for him. All I want is for him to talk, conversate, & communicate. I will not mind a copay but I want all the pills and meds and drs appts people on medicaid to have a copay too. That is fair. Oh and single parents should not get medicaid just because they have kids and no jobs. Give the kids medicaid but the parents can suck it up like the rest of us. Just because I have insurance does not mean I run to the Dr. I have not been in years. I do not want to spend the copay on myself I save it for when my kids are sick.

Jan. 20 2012 10:10 AM
Susan from Centennial, CO

My son was labeled in preschool and I accepted the 'experts' at the school. Over time I began questioning 'autism' and what we doing to our kids. I think my son had issues initially due to Central Auditory Processing Disorder (CAPD) and this was proven with auditory testing at CSU when he was in elementary school. Most of the preschool classes were in acoustically inferior trailers and taking him to a place like Chucky Cheese would offer too much auditory stimulation and result in meltdowns. I personally would be annoyed by the amount of noise and dreaded kid birthday invitations there.
I question the ethics of labeling kids on several grounds, such as do schools and private psychologists/psychiatrists reach for some kind of 'diagnosis' in the DSM so they receive school funding or are ensured payment by the insurance company? Do pharmaceuticals push for the drugging of kids for their financial survival at the expense of our kids? Do our kids really benefit from this?
I pushed to get my son out of Special Ed in middle school but it didn't come into fruition until the first year of high school because of fears his father that he would lose the Special Ed safety net and would be kicked out of school for any bad behavior. I asked to allow him to pay the consequences and at one time in all of middle school he was suspended for hitting another kid.
My son could feel the special treatment he was being given even though no one told him he was labeled autistic in the school system and he hated it. One teacher didn't like his behavior and taunted him with subtle words indicating he had a problem and he picked up on it and disliked it. I told him if you don't want to be treated like special ed then don't act like special ed because behavior is what special ed is based on. At his request, he was told and knowing now that he was labeled by the school system is distasteful for him but perhaps will shed some light on how he was being treated throughout elementary and middle school.
There is no Special Ed department in the real world and I believe we need to have our kids accept responsibility for their own behavior and the schools need to focus on subject matter and stop labeling. I don't think drugging our kids is the way to go. Getting testing for tangible, not subjective, issues, such as CAPD, would be more beneficial along with reducing the size of the classroom to a more manageable level for the teacher and to reduce noise. And stop teaching in trailers.
We are not accepting our kids 'as is' but treating them as abnormal. We aren't teaching our kids that they hold the key to their own behavior but that acting out is an unfortunate byproduct of their 'condition'. Eccentricity and/or introversion are not mental disorders. There are the obvious 'Rain Man' cases out there who cannot function in regular society but to be labeling at the rate we are is immoral and detrimental to the healthy well-being of our kids and their self-perception.

Jan. 20 2012 09:44 AM
Dale Sheets from Illinois

Temple is correct. the professionals are not following the guidlines to accurately diagnosis kids with aspergers/autism. The cost is too high to receive adequate screening.

The changes in the definition is to withhold help to people who have limited help to succeed. it will isolate many more young adults with limited resources for work assistance and other supports to live independently and training.

Jan. 20 2012 07:04 AM

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