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Roy Richard Grinker on proposed DSM changes

February 10th, 2010 · 7 Comments · Kudos

In a perfect world where evidence trumps emotion, and D-list actresses stick to their scripts, the words “autism” and “vaccines” would never appear in the same sentence. So it was a relief to read Dr. Richard Grinker’s op-ed in today’s New York Times explaining the proposed changes to how autism is diagnosed in the Diagnostic and Statistical Manual of Mental Disorders.

The stigma of autism is fading fast, says Grinker, a professor of anthropology at George Washington University, and author of Unstrange Minds, which deconstructs the myth of the autism epidemic. The proposed changes to the DSM V would fold the current subtypes of autism into the category of “autism spectrum disorder”. Gone will be the labels of Asperger’s syndrome, autistic disorder, and PDD-NOS. Grinker makes a convincing case for the change.

When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis became more common, it broadened the public understanding of autism as a spectrum. It helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism. And it helped educators justify providing services for children who, in the past, might have been unappreciated or even bullied because of their differences, but received no help from teachers.

But what is culturally convenient is not necessarily scientifically accurate. The differences between the “high functioning” Asperger’s and autistic disorder are not as sharply drawn as commonly thought. “People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism,” writes Grinker, whose 18-year-old daughter, Isabel, is on the spectrum. “So Asperger’s should not be a synonym for ‘high functioning.’ Likewise, people with autism who are described as ‘low functioning,’ including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.”

The practical advantage of viewing autism on a continuum, rather than a collection of distinct subtypes, makes it easier for diagnosticians, and parents, to identify and appreciate the “often unpredictable changes among children with autism, ” says Grinker. He cites his own daughter as an example.

When Isabel was 3, she had all the symptoms of autistic disorder, but if she walked into a doctor’s office today as a new patient — a chatty, quirky high school senior — she would more likely be given a diagnosis of Asperger’s disorder. Narrow diagnostic categories do not help us understand the way a person will develop over time.

That’s something that is easy for parents to forget – that autisms are developmental delays, not stasis. These kids continue to grow, adapt and learn, just as their neurotypical peers do, albeit at their own pace. Vaccine rejectionists, and the spin-off autism recovery industry, simultaneously ignore and feed off of this fact. But given enough time, and lack of a control group, a diet of peanut butter sandwiches and grape Nehi is sure to be followed by a welcome developmental spurt.

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7 responses so far ↓

  • 1 Adelaide Dupont // Feb 10, 2010 at 7:58 pm

    I liked Isabel’s sentence to her health teacher at the end of the article.

  • 2 Is Autism Treatble? // Feb 10, 2010 at 9:39 pm

    I think the new change in the label would help more people understand autism better.

  • 3 Theo // Feb 11, 2010 at 8:17 am

    I am very much opposed to the change. I am one of the few who believes that HFA and Asperger’s are not the same thing. And yes, for more than just the early language delay thing.

    With Asperger’s, we actually do want to be a part of the rest of society. We want to be able to understand how to be social, how to have ordinary conversations to make friends. We want to be a part of the rest of the world, we just don’t know how.

    We look for a bridge between our own world and the world everyone else is in, somewhere we can reach out to your world, and you can reach out to ours.

    For those with HFA, those whom I have gotten to know, and I am not wanting to offend anyone it is different. They are very content in thier own world. Whereas they will talk to and socialize with others as much as needed to get along in life, they don’t feel this need to fit in or be a part of society the way someone with AS would. As stated before, they are content in thier world. They like friends, but society as a whole doesn’t hold a lot of meaning for them.

    Below I will post a rather emotional yet thought out response I have put on other blogs about why I think it is a mistake to lump Asperger’s in under the general Autism label:

    I just posted this on another blog on the hub but here is my opinion.

    “It most certainly does matter! What they are doing is a mistake For many reasons! I understand that parents are wanting services for those with Asperger’s. And this is desperately needed, as I have AS I know this! But we need services that make sense to deal with the issues that we on the other side of the spectrum face! I already have to go through therapies and tests that I don’t need, waisitng tons of state money, because issues that are apart of other kinds of autism. I don’t have these issues. No one that I know with AS does.

    But we are put through the tests and therapies anyway. Meanwhile, in the areas we actually DO need help, there is absolutely nothing!! I see no programs helping the college bound HFA/AS with transitioning from highschool into college. I see no programs to help us find, apply for, learn interview skills for, and keep jobs. As well as communicating with your boss, and your fellow employees. I see no programs that teach us how to budget, how to balance a check book, how to clean, how to cook, how to spend wisely. No programs on how to deal with and live in society and deal with people in a way that would make it easier to live independently on our own.

    I see no help with housing, on helping us learn how to be a part of the community, on helping us cope with anxiety, or helping us understnad what is expected of us by society and why. No, all these services don’t exist. And continue to not even be discussed unless someone like me comes along who forces the issue!

    This cookie cutter stlye of services has got to stop! They already treat almost all of us the same, giving us all the same therapies, same lessons, same benefits, etc. No matter how drasticly different we and our needs are from one another.It’s a waiste of time, money, resources, and continues to allow millions of people to fall through the cracks of our system, with still no help.

    This will only make it worse. For along with lumping AS under Autism, they are changing the criteria to better fit it under that area. Which means more will fall through the cracks, even though they have genuine issues that need to be addressed!

    I know, parents want to be able to get benefits for thier children. But why are there not programs out there to help and teach us how to transition and help us throughout college or employment so that we can get meaningful jobs and not NEED goverment benefits? Why is it so hard to understand the idea of paying a little now for these services to save alot later when we are able to get along without goverment benefits?

    We have got to stop this cookie cutter one size fits all approach to treating a Spectrum of disorders! Especially one as large with such drastic differences as the Autism Spectrum! We have got to start indivudualizing care based off the needs and the goals of each individual on the Spectrum. And with someone with AS will have needs and issues that are different from someone on the otherside of the Spectrum, to lump us in with those who need different services doesn’t make logical sense and in the end we will be no better off than we are now.

    I think we need to keep Asperger’s seperate. That Special Education should instead widen it’s criteria, and supports that truly need to be finally get put into place. And that care and supports be put in place based on the needs of the individual, not all on the Spectrum getting the same treatment and being thought of the same.

    That is why the system is failing so miserably now, and after this will continue to fail. Because they don’t get it! THey are doing nothing but going in circles instead of addressing the issues at hand. The “at least we are doing something” mentality is total bs. Because if your something is the wrong thing, nothing will ever change.”

    I know it looks braoder, like it will let more in. But it will be more restrictive in state’s like mine, who will instead look at the autism criteria instead of the 299.0 criteria. It will get used against us. And with the label of autism instead of AS, more of us will find it hard to find jobs here. Remember, in the Southwest it is good ol boy town, and the word autism will send employers running in the other direction. And meanwhile, none of the issues that need to be addresssed will be addressed. It will continue to be the same old thing.

    It also will take away from me and many of myfriends the only thing we had to be able to explain the difference between us, NT’s, and those with other kinds of autism. This will just make all the special educators, the teachers, staff, case managers, doctors, and therapists to treat us all the same, with the same therapies, treatments, etc even though we do not have the same issues or in some cases the issues that are in the same areas are not as severe as in other types of autism. No one wants to help with the problems we do have. Everyone wants to treat us for the problems we don’t have.

    Maybe it’s just my state.

    Theo (Advocacy Specialist, MO Autism Commisioner, female with Asperger’s)

  • 4 Viverrine // Feb 11, 2010 at 11:05 am

    Theo—by your definition, I must have the wrong diagnosis and simply be very HFA and not Asperger’s, even though I actually spoke quite a bit earlier than normal children. What little yearning I have to learn better social skills and fit in to society has to do with my understanding that survival may be very difficult if I choose not to socialize beyond the necessary. I have to admit that, other than matters of convenience ( in the form of readily available books, art supplies and fresh produce) I could be quite happy as a desert hermit or traditional shepherd visiting town only a few times a year. So I do not see the meaningful distinction between that and what you describe as “HFA not Asperger’s”. I do share some of your other concerns, however. I just am not sure that much the same bad results couldn’t happen anyway, or are guaranteed not to happen without the name change.

  • 5 Joseph // Feb 12, 2010 at 1:05 pm

    With Asperger’s, we actually do want to be a part of the rest of society. We want to be able to understand how to be social, how to have ordinary conversations to make friends. We want to be a part of the rest of the world, we just don’t know how.

    @Theo: You’re generalizing… probably based on personal experience?

  • 6 brandy // Feb 23, 2010 at 9:52 am

    I’m very much in support of this change. Although my official diagnosis at this time is Asperger’s Syndrome; I feel that if I had been diagnosed at a younger age, I would have been diagnsoed as possibly classically autistic or PDD-NOS. Most of the time, I just say that I’m autistic.

    There is a bit of pointless bickering too at times about whether people with Asperger’s are “really” autistic, and it gets in the way of discussions about what help is needed and input from those with a diagnosis of Asperger’s.

    At times, I function very well and people may not notice I have autism. At other times, it would be a tough case to make that I have Asperger’s and not a more “severe” form of autism.

    Also, I have heard from parents who say their children are denied services for their children who are diagnosed as Asperger’s; even when the same services are given to a child with classical Autism.

    I hope this change will allow people to focus on more important issues than where to neatly file people into a certain sub-section of ASDs.

    So, I am pleased with the change.

  • 7 Marianne // Mar 1, 2010 at 5:24 pm

    I think the change would help for two reasons:

    1. It would make it so much easier for society to embrace and understand.

    2. It would stop the educational system from pigeonholing students based on a few letters/label. There are kids with Asperger’s that need more help than some diagnosed with Autism, etc. But the school districts continue to see one as ‘worse’ than the other.

    At this point, I think we all need to stop quibbling about labels and work out some real solutions for helping ALL on the spectrum reach their full potential–whatever that might be.

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