New Autism Definition Could Exclude Many
EmailProposed changes to the definition of autism might make it much harder for a person to be diagnosed with the disorder. The change would likely slow the rapidly increasing rate of autism diagnoses but also spark fears that some children with autism would no longer fit its definition, excluding them from services and treatments they depend on.
A panel of experts from the American Psychiatric Association re-evaluating the definition currently published in the “bible” of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders, which is used to determine treatment, insurance coverage and access to services for a variety of mental illnesses.
That definition includes a number of disorders under the umbrella of autism spectrum disorder, including autism disorder, Asperger’s disorder and pervasive development disorder not otherwise specified, which usually includes people who don’t fit neatly into the other categories of autism. Currently, people must show at least six out of 12 possible behaviors to be diagnosed as autistic.
According to a report published Wednesday in the New York Times, proposed changes to the definition for the new DSM edition, slated to be published next year, would exclude Asperger’s and PDDNOS and consolidate autism diagnoses under a narrower category of autism. The person would have to show three deficits in social interaction and communication and two repetitive behaviors, a stricter set of criteria.
Many autism experts support the proposed changes, saying they will make it far easier to diagnose autism.
“Distinctions between the current subtypes are difficult to make, and do not necessary have differential implications for treatment. The line between PDDNOS and autism is often blurry, as is the line between Asperger’s disorder and ‘high functioning’ autism,” Wendy Stone, director of the University of Washington Autism Center, told ABC News. “Even well-trained researchers and clinicians using standardized measures may not agree on which side of these ‘lines’ an individual may fit.”
Experts say the changes will probably also arrest the rate of autism diagnoses, which have been rising sharply in recent years. The Centers for Disease Control and Prevention estimates that one in 110 children in the U.S. has autism under the old definition.
Dr. Fred Volkmar, director of the Child Study Center at the Yale School of Medicine, led a team of researchers who analyzed data from a 1994 study testing the criteria used in the current edition of DSM. According to a statement from Yale University, the researchers found that half of the people diagnosed with autism in that trial would no longer merit a diagnosis under the new proposed criteria.
In the statement, Dr. Volkmar emphasized that these preliminary findings suggest that “only the most cognitively able” would be excluded from an autism diagnosis.
Lori Warner, director of the Hope Center for Autism at Beaumont Children’s Hospital Center in Royal Oak, Mich., told ABC News that these cognitively able, ‘high-functioning’ autistics still require a number of treatment and support services.
“People tend to think that the more severely impacted children need the most services. But often these high-functioning individuals with enough help could either move out of the spectrum or live more functional lives with dignity,” Warner said. “If the Volkmar group is correct, I’m very worried for that segment of families.”
If patients lose their diagnosis status, they might not be able to get the treatments and services provided for autistic patients and their families, which often require a diagnosis to qualify for insurance coverage, special education and other assistance.
“Really, in a lot of states, you need that diagnosis in order to have treatment covered. If you don’t have that diagnosis, you’re going to try to pay out of pocket or you have no access to these services,” Warner said. “It could be devastating for a lot of families.”
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As a parent of a child with Aspergers, this is absolutely devastating. So often these children are refused from the help they need because they are labeled higher functioning, despite not having the social skills required to maintain a normal life. Changing the definition on them now will further limit the resources that they have available. These children can offer so much to society given the opportunity to succeed and shame on any organization who would limit their success in any way! Sounds like a horrible way to take pressure off the fact that the autism rate is now 1:110… and 1:70 boys. Solve the problem! Don’t just change the definition!
Posted by: aspiemom | January 20, 2012 January 20, 2012, 3:47 pm
The wider you cast a net the more fish you catch. The previous definition was too generalized.
Posted by: snewsom2997 | January 20, 2012 January 20, 2012, 3:50 pm
I am right there with you ASPIEMOM. My son was just recently diagnosed with Aspbergers and he has just begun receiving speech and social skills therapy through the school district. This new definiction could potentially disqualify him from receiving these special services that he desperately needs. This is scary news.
Posted by: Anotheraspiemom | January 20, 2012 January 20, 2012, 4:12 pm
Early intervention is the key to adult success for Asperger’s. If this group is “locked out” by the DSM IV definition, it deprives families of desparately needed services. Autism is a Spectrum disorder, meaning people will fall all the way along the line. Whacking off one end or the other doesn’t change how lives are affected, it only serves to give insurance and school districts another way to save money.
Posted by: aspiemom3 | January 20, 2012 January 20, 2012, 4:55 pm
Really, so just because they are high functioning they should be weeded out. Even aspie’s need help. This could effect the help the school gives them and disqualify them for IEP’s and such. If there is an overdiagnosis of autism its the psychologists not the parents. My lil man needs those services to help him function better. We found out early and that has made all the difference!
Posted by: lovemyapsie | January 20, 2012 January 20, 2012, 6:08 pm
I pray to God that these people that made this decision never have to face getting an autism diagnosis for any of their children. They will def sing a different tune if they do. As an autism mommy I am furious!!! Let’s take what is already a difficult matter, and make it even harder. This is just a tactic to reduce the rate of autism that is quickly spiraling out of control. This will bring the numbers down. The kids lost in the cracks who are no longer considered autistic will loose therapy for autism and funding.
Posted by: Jessalynn Bowman | January 20, 2012 January 20, 2012, 8:16 pm
Without my son’s diagnosis of High Functioning Autism , he would not be receiving the therapy and special ESE education that he is receiving/and thriving in now. We have no health insurance and make more than the federal poverty level so we fall through the cracks of all aid with the exception of the public school EELP class that he is in and the accompanying speech therapy that he receives. We would have nothing for him if his diagnosis was changed. Do these experts not realize that they are playing with CHILDRENS LIVES/FUTURES with their sweeping non-sencical decisions! I am do concerned and angry by this. Making innocent children suffer because they want to sweep the problem under the rug by making it look to be not as bad as it is is SHAMEFUL!!!
Posted by: HIGHFUNCTIONERS MOM | January 20, 2012 January 20, 2012, 8:55 pm
I have a 6 year old grandson that have asperger and this wonderful child never talked until he was 3 years old,he banged his head on the wall all day long and yelled. Then when he turned 3 years olded they had a program he could get in and it was like a mircale. It just opened up the world for he started talking and every year since then he has had special help and thearpy and now they want to take that away from him.Not only him all the other children these program help. Lord help them all
Posted by: Marie | January 20, 2012 January 20, 2012, 10:13 pm
Does anyone know for sure that your Asperger’s or High Functioning Autism diagnosed child will not qualify? As a parent of a child with Asperger’s and as a teacher’s assistant who works with students with Autism, I welcome this tightening of criteria. I currently work with students who have the label but clearly do NIOT have Autism. Parents who want funding for their children “shop” around until they get this diagnosis from so-called professionals who have NO IDEA what Autism/Asperger’s really looks like, so they will get services for their kids under false pretences.. These are the people who RUIN it for our children . THis tightening of criteria will HELP our children who actually do have Autism as they will not have to compete for services with those who really don’t meet the criteria for Autism disorder. If your child has sonmething different, you need to fight for support via another route..
Posted by: Aspiemom2 | January 20, 2012 January 20, 2012, 10:30 pm
This is just non sense absolutely none sense. Seriously just a way to save themselves money and put these poor children at more risks at adulthood. I dont know weather or not my son would be taken off the list but he has major issues that need to be addressed by professionals and he is succeeding in his ASD lab at school. This is just truly not a good step in children’s future. Absolutely disgusted.
Posted by: Shannon | January 20, 2012 January 20, 2012, 11:54 pm
They can call it whatever they want, but the bottom line is that kids and adults with developmental deficits and specific symptoms will still need services, whether they are diagnosed with ASD or not. I seriously doubt that the intent here is to disqualify these people from all services…Right? It is likely that these pros basically want to tidy up the diagnostic criteria for academic reasons. If so, they will have to define new diagnoses for those that have diagnosable deficits but are outside the new ASD guidelines, otherwise this change will a be a serious dereliction of professional duty.
Posted by: ThePreacher21 | January 21, 2012 January 21, 2012, 1:23 am
First, I highly doubt whether many of the previous commenters have actually researched and read the proposed revisions. So many of the comments are reactionary and emotional, rather than informed. After reading both the current IV and the proposed V versions, the revisions add a much needed CLARITY to the definition of Autism. You don’t have to believe me; go ahead and read the two versions. Second, the tiered level of service still must follow the Special Ed policy of “least restrictive environment.” The intention of a tiered system is probably to make sure that a highly functioning autistic child is NOT placed with lower functioning autistic children, thus NULLIFYING progress made (or even reverting progress). The aim is probably NOT to take services away from your child, but to give the correct services. Lastly, I’d like to challenge parents of Asperger’s/Autistic children to build in socialization time, outside of the immediate family, on a regular basis. As a sibling of a high functioning Autistic brother, I know it’s tough, but I also believe, as a teacher, that it is unreasonable to put all of the responsibility to socialize a child on the school.
Posted by: jaded | January 21, 2012 January 21, 2012, 3:17 am
Private Insurance companies don’t currently ration healthcare, ya right.
Posted by: dan | January 21, 2012 January 21, 2012, 2:20 pm
I have Asperger’s Syndrome. Not every person with an ASD is the same. While one person may need little to no help in one are, another might. Not all college students are the same: they have different majors and minors, some live in the dorms, some live off-campus, some are full-time, others are part-time – but they are still a college student. The same concept applies to those on the Autism Spectrum. So changing the criteria would do harm.
Posted by: Brian Wong | January 21, 2012 January 21, 2012, 4:49 pm
Sorry to say this but this health diagnosis has become too expensive. This is only going to get worse and worse. We can’t afford it. The powers that be will go after one diagnosis after another. Obesity, mental illness, nothing will be sacred.
Posted by: Lou | January 21, 2012 January 21, 2012, 7:41 pm
The changes in the DSM is very disturbing.I would like to know who is going reimburse the parents for all the money they have paid to institutions and health insurances specifically designed for children and adults who have been diagnosed with Autism – who will not have Autism – because of the DSM changes.Oh and what about the “Combating Autism Reauthorization Act ” that congress recently renewed Autism and Aspergers are both in that bill for research funding until 2014.This change needs to be fought against – and science research in Autism needs be more transparent.
Posted by: Jen | January 22, 2012 January 22, 2012, 2:01 am
There are so many adults who were misdiagnosed in the 1960′s and 1970′s when symptoms also overlap mental health symptoms such as ADHD and schizophrenia. Pharmaceutical companies made alot of money off their chemical cocktails. True rehabilitation in social and behavioral training was almost nil or came in the form of peer supports networks. These networks lacked in sensitivity to individual needs. Cost containment seems to be the real agenda here.
Elizabeth Turner former director of the National Mental Health Consumers Association
Posted by: Elizabeth Turner | January 22, 2012 January 22, 2012, 10:42 am
@Brian Wong. I think your analogy highlights the limitations with which the public views this issue. In your analogy, you already have those who self-identify as “college students”, but provided no actual definition of what made these people college students, only the general assumption that a college student takes college classes. Then, are high school students making up remedial classes at the local CC considered college students? Professionals returning to take a class or two, are they college students? I’m doing that right now, and I don’t identify myself as one. I certainly have Autistic-tendencies, having grown up with Autistic individuals my entire life, but I am not Autistic. So not simply changing, but refining the definition is necessary over time, especially as our culture and society progresses.
I think what many parents are afraid of is, if I could use the college analogy again, that making a distinction in “college students”, of those attending a community college and an out-of-state 4-year university, that the amount of financial aid provided will no longer be the same.
Posted by: jaded | January 22, 2012 January 22, 2012, 12:09 pm
i have a son with asperger , before the diagnosis he was lost ,his teacher used to say he is very smart but it is very difficult to make him stay on task he did not look at people in the eyes and he had a hard time trying to focus it was a different problem everyday he has been in therapy for about 2 years now and the difference is noticeable he looks and acts more normal now he tries to make friends but is not easy for him and he gets bullied all the time , without the help he gets i don’t know what i would do i want him to succeed but i can not help him all by my self
Posted by: marina | January 22, 2012 January 22, 2012, 2:58 pm
As a substitute teacher who deals with students with Autism, it is about time they are reclassifying Autism. Half the kids that are diagnosed with Austim that I deal with, simply do not have it, have other mental problems, or have ridiculous parents who claim their kid has Austim because he is lazy and doesn’t want to do Homework. I’ve seen ADHD, ADD labeled as Autism when it is not. The majority of the parents are total free-loaders who demand EXTREMELY expensive services thinking that it will cure their Autism. (including free transportation- drive your own stupid kid to school and stop sucking school budgets dry with your demands). There is NO CURE FOR AUTISM!
Posted by: Cki | January 22, 2012 January 22, 2012, 5:12 pm
So how do you cure high blood pressure? Well of course you raise the bar so that everyone is within the “new” normal! Yay, we cured everyone!
Posted by: KitNyx | January 23, 2012 January 23, 2012, 5:00 am
So… I guess this means that instead of slapping a label on their children, parents will actually have to, you know, parent? Good.
Posted by: That's Enough | January 23, 2012 January 23, 2012, 1:42 pm
I really wish most of these had like buttons on them. My 12 year old son is high functioning but does lack in the social skills, making eye contact, obsessed with certain things and has a hard time in school comprehending things he reads and focusing. When problems arise he has his “meltdowns” and really no way to bring him out of it except time. He is mainstreamed but has to have assistants with him to try to keep him on task. I don’t know what would happen if he got that little bit of help taken away because it has been mistaken for bad behavior when he gets stressed. I want him to continue to be all he can be so he can become a productive member of society and overcome his difficulties.
Posted by: concerned mother | January 23, 2012 January 23, 2012, 2:02 pm
Has anyone figured out why nearly ALL of the past ten years of autism diagnosis have been “high functioning” or “aspergers”. That alone should tell you something.
Posted by: Nancy | January 30, 2012 January 30, 2012, 11:18 am
My daughter has Moderate to high Functioning Autism. Any parent that really has a child that has autism, does not go out seeking a diagnois for autism. It is sad to think that some parents would. I have never heard of that. I am not against the new rules. I welcome it. Just remember that the label does not define the child!!! If this change effects you then It is up to you as a parent to go to your local department of education and special services if you feel your child is not getting the proper educational services.
Posted by: TERRA | February 19, 2012 February 19, 2012, 4:17 pm