Proposed changes to autism definition may mean new diagnoses for people with Asperger's

istockphoto

(CBS)The definition of autism may soon be changing, according to a new report.

PICTURES: Autism-spectrum disorders: 24 warning signs

The proposed revisions - which are "90 percent complete" - would dramatically change the current diagnostic criteria for an autism spectrum disorder, The New York Times reported, potentially re-diagnosing tens of thousands of people.

The proposed changes have some experts and parents worried that lots of people who currently are diagnosed with an autism spectrum disorder may be left in the dark when it comes to necessary state benefits.

An expert panel from the American Psychological Association is mulling the revisions for its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, known in the medical community as the DSM-V. The DSM is basically the medical community's bible for diagnosing mental health disorders.

Just what are the proposed changes? Currently, a person would qualify for a diagnosis of autism spectrum disorder by exhibiting 6 of the 12 behaviors on the criteria list, which include failure to develop peer relationships, inflexible adherence to a routine, or delays in communication or imaginative play. Under the proposed changes, a person would need to fit a much narrower description - showing three deficits in social interaction, and at least two repetitive behaviors.

Currently, about 1 in 110 children have an autism spectrum disorder, according to the CDC, and up to 1.5 million children and adults overall are diagnosed with one. Some may be diagnosed with more severe forms of autism, while others have Asperger's syndrome or  "pervasive developmental disorder, not otherwise specified."

The proposed changes would wipe the latter two disorders from the manual's pages, lumping them all under autism spectrum disorder.

"I'm very concerned about the change in diagnosis, because I wonder if my daughter would even qualify," Mary Meyer of Ramsey, N.J., told the New York Times. Meyer's 37-year-old daughter has Asperger syndrome, a diagnosis which helps her gain access to state services. "She's on disability, which is partly based on the Asperger's; and I'm hoping to get her into supportive housing, which also depends on her diagnosis."

The proposed changes to the definition have a critic in Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine. Volkmar formerly served on the APA's expert panel to update the manual, but resigned early on. He says the new definition will end the skyrocketing autism rates.

"We would nip it in the bud," he told the Times. But at what cost? "The major impact here is on the more cognitively able," Volkmar said.

Volkmar and colleagues at Yale conducted their own study to see the revision's impact, by analyzing data from a 1993 study that served as a basis for the current autism criteria. The researchers found that under the new definition, 65 percent of children and adults with high-functioning forms of autism would not meet the current definition.

Experts currently working on the revised definition disagreed with Volkmar's early findings. "I don't know how they're getting those numbers," task force member Dr. Catherine Lord, an autism researcher at the University of Michigan, said of Volkmar's report.

Volkmar's findings have many parents and advocates worried that people with higher-functioning forms of the disorder might be at risk for losing state services for education, transportation, health, and other social services they may currently qualify for.

Dr. Sally Ozonoff, a professor of psychiatry at the University of California, Davis, who is not involved in the current revisions, thinks parents need not worry, and the new changes might help more kids get access to therapies they couldn't, such as in states that only fund services for people with autism, but not Asperger's.

"I can state that the intentions of that group, and of most professionals in the field, would not be to exclude anyone from services or to tighten criteria to reduce the number of diagnoses," Ozonoff told Time Healthland. Far from it."

But Lori Sherry, president of the Asperger Syndrome Education Network, summed up the persisting fears for many parents.

"Our fear is that we are going to take a big step backward," she told Times. "If clinicians say, 'These kids don't fit the criteria for an autism spectrum diagnosis,' they are not going to get the supports and services they need, and they're going to experience failure."

Would the proposed changes affect someone you know? 

25 Photos

Autism-spectrum disorders: 24 warning signs

[marlenef52]

These people need to live with these children with Aspergers.This is a step back these people will be our future homeless because they got no help because this is not real.My son has Aspergers he's 23 he not able to live on his own.He has a lot of problems also.I can't get him out of the house bacause of the stress.I'm worried about his future I'm getting older and we don't have much familly.All this is about is for the goverment to save money and forget the people who need help.

[jenniferleaallen]

This is scary. My son Sam has Aspergers Syndrome and without assistance in school and beyond...I'm afraid for his future. Aspergers Syndrome completely describes Sam and his behaviors. To lump him in Autism group or worse....to take away his description of challenges will not make them (or him) go away. This feels like a cost-cutting change that will horribly affect those with Aspergers. Their future is bleak with a staggering 87% not working due to their social loss. This is a travesty.

[marlenef52]

My son has Aspergers he's 23 he's can't even go to Walmart it stresses him out to much.He has a lot of problems.I'm 60 and worried about his future.A lot of these people will be our future homeless.He will be in the Autism group because there is no way he can take care of his self.

[Nebulon-B_Frigate_FTW]

Well, I think that grouping together these similar groups is a good idea, but I fear that many will be left behind.

[Jonathansmom]

My son was diagnosed with autism at age 2, and 9 months later, the diagnosis was removed by the same doctor who made the original diagnosis. I'm concerned by the claim that some children "outgrow" this. As soon as we realized my son was autistic, we began intensive therapy. This truly changed who my child was, he started talking, symptoms started to go away and allowed him to learn. He's six now, and when I try to tell people he was autistic, they don't believe me, saying he must have been misdiagnosed. I'm an educated professional, and I observed my child going from being autistic to not. It wasn't that he just "grew out of it.". He dramatically changed. 'I'm concerned that some parents with children who have mild autism will be told to wait and see if they grow out of it, allowing the autism to worsen. I am glad to hear professionals saying now that some children do get better. Autism is not always a problem for life.

[thrushjaz]

This diagnosis change is going to wreak havoc with the Autism community...If you have someone in your family with Autism like I do, I highly recommend that you write to someone with authority that can stop this now..These families even with the High functioning diagnosis of Autism spectrum disorders ALREADY have a terribly difficult struggle getting schools to provide the services they desperately need. This Dr. Volkmar needs to be dismissed from this post immediately!

[colorfuldreamer]

What is a name? A rose by any other word would smell just as sweet.

Asperger's is a huge part of my family, and I know how tough it can be on those that have it and those around them, but why do we need the term? I understand how helpful it is, to have a name to put to it, but these people are people too, why do they need the term, it's not going to change their nature, it's not going to change their shortcomings and amazing feats.

Yeah, this situation isn't preferable, and it isn't pleasant, but we can get through it. Asperger's didn't become a major diagnosis until recently, up until now they were known as eccentric, and what's so wrong with that that they need special treatment as autistic? They're different, not sick, not hurt, not disabled, they just function differently. They can't do everything that our society has come to expect of people, that doesn't mean they're disabled, and with how common Asperger's is our society is what needs to change, because not everyone can do everything.

I have been fighting to live up to my brother with Asperger's all my life; it offends me when people think he isn't capable, because he's more than capable, I know what he can do and how far he can go because I've worshiped him from a young age. Just because they aren't the same as us, they function differently, doesn't mean they need our help in society, left on their own they can do amazing things as long as society isn't trying to make them conform.

I have never viewed Asperger's as an autism, though that's how I always explained it, who wants the connotations of autism on them anyway. I think that this is a step in the right direction for society, we shouldn't single them out and classify them, that's what society would do, and they wouldn't necessarily do so. We should relearn to let them live among us as normal people, because that's all they are. We all have things that we need help with, being socially awkward or challenged shouldn't be a shortcoming in society any more than my being short is. I can't reach things on the top shelf, they can't make strong peer foundations, it's the same thing.

Those with Asperger's and their loved ones don't need to crutch of a title, as they amazing people that they are and have become, they can make it out there without it.

[pome11]

Colorfuldreamer: What you said is beautiful, and I absolutely love what you said about your brother. However, I'm not so sure that your argument addresses what parents and others are upset about. It is not having them identified separately and having something hanging over them. It's more that if the qualifications change and become stricter, those who have a high-functioning form of Asperger's may lose their diagnosis and, therefore, all of the services they receive to help them be so successful and capable in society. My son is one of those high-functioning kids who recently has been diagnosed with Asperger's after SIX years of questioning and fighting. He will now finally qualify to receive the help that I can NOT give him, so he CAN achieve more. Now, I find this article and have concerns that he will lose that help before he even has a chance to get it. Again, I really liked what you had to say, but I don't think that's what our concerns are. We want our children to receive the services to help them be successful - not so much to conform - but so they can learn how to make their "eccentricities" work for them and for others.

[mom-to-Aspergers-child]

I want to know if they take this away from my wonderful child are they going to also take away his symptoms!!! I finally got someone to listen to me and my family that something was not right with my child and now someone who I'm sure does not have a child with ASD is going to tell me that nothing to wrong with my child. This is crap!! WHAT ARE WE TO DO?? I'm with you THIS NEEDS TO GO TO CONGRESS OR HIGHER!!! IF WE DON'T STAND UP FOR OUR CHILDREN WHO WILL!! WE ARE THE VOICE FOR THEM!!

[mom-to-Aspergers-child]

I want to know if they take this away from my wonderful child are they going to also take away his symptoms!!! I finally got someone to listen to me and my family that something was not right with my child and now someone who I'm sure does not have a child with ASD is going to tell me that nothing to wrong with my child. This is crap!! WHAT ARE WE TO DO?? I'm with you this needs THIS NEEDS TO GO TO CONGRESS OR HIGHER!!!

[maurine9]

If this change ever takes place, there will be tens of thousands of children left without services, insurance and proper help. How does one give a child a diagnosis of autism and then take it away? This must be the answer to the autism increase denial. Can't imagine what the costs will be in undiagnosing a generation of children both monetarily and pshchologically. I do believe that the active autism community will fight this.; The ironic thing is that autism isn't even a psychological illness and never belonged in the DSM to begin with. It belongs under a serious medical condition. The children suffer from a metabolic disorder that affects every organ in their bodies. They have to fight oxidative stress, immune dysfunction, inflammatory bowel disease, to name a few. It needs to be pulled from the DSM and then there wouldn't be this possible mess of undiagnosing at all.
Maurine Meleck, SC
grandmother to 2 vaccine injured boys, one recovered.

[raine2002us]

I am a parent of a child that was diagnosed under the Autistic Spectrum Disorder, i.e. PDD, his neurologist stated that he will stay under the Autism Umbrella. I do not understand who has the right to say that a child has 6 of the 12 because if you know one Asperger's kid you know one. I do not appreciate the bullying of the medical officials, stating such information as what was placed in this article. When I have two neurologist in less than a year stating the same facts. My son is 13 and in 6th grade, and I have had him inclusion until recently now we have decided to do a portion of his educational services be part of placing him in self contain. I have never applied for social security for my son, because we have been fortune enough to have a strong support system outside of his education as well as inside of our family. My son can not make a successful peer group because he doesn't understand him and the do not understand him, my son has recently began flapping again because of stressors at school. My son plays well alone, and wants to only play with a few selected peers. Along with many other symptoms, is he text book Autistic no,because really no one is because they all have different actions that are all the symptoms. My son 13 that has been talking for 9 years, is still learning.Prior to diagnosis we dealt with the following symptoms
•
• no babbling or pointing by age 1
• no single words by 16 months or two-word phrases by age 2
• no response to name
• loss of language or social skills
• poor eye contact
Now we deal with:
• impaired ability to make friends with peers
• impaired ability to initiate or sustain a conversation with others
• absence or impairment of imaginative and social play
• restricted patterns of interest that are abnormal in intensity or focus
• preoccupation with certain objects or subjects
• inflexible adherence to specific routines or rituals
I fear that all the success that we have made will send us 50 steps back. I believe if this is something that is just in the thought process, MUST be rethought before this bureaucratic conspiracy makes a grave mistake for many. I have come to the reality that my son may never be able to separate from his family and that is fine, as long as he can be a successful member of society I will be happy. What would these officials have us parents and educators do, place these miraculous human beings in an institution to be forgotten, I will fight congress before that happens. I believe the quote from Lori Sherry, president of the Asperger Syndrome Education Network, summed up the persisting fears for many parents.

"Our fear is that we are going to take a big step backward," she told Times. "If clinicians say, 'These kids don't fit the criteria for an autism spectrum diagnosis,' they are not going to get the supports and services they need, and they're going to experience failure."
I believe these clinicians need to rethink their process, if it is not Autism then they can pay for the bills needed to diagnosed why these children/adults have meltdowns and help parents and loved one relax. I must say they need to be ashamed of themselves, these clinicians are the ones that said if your child has symptoms A-C then definitely ASD, now OOPS there is a mistake and they are wrong, bologne.

I suggest you work with parents and loved ones before putting them through the torture that has been endured to find any happy medium.