Defending a Diagnosis

February 17, 2010 at 9:39 am 7 comments

When I first heard that the Asperger’s syndrome diagnosis was going to be dissolved and absorbed into the autism spectrum disorders, my first thought was that people with the Asperger’s diagnosis were not going to be pleased. As it turns out, I was right. Aspies, a name many with the diagnosis have adopted, have an identity and a community wrapped up in the diagnosis around which many rally in mutual support — a diagnosis that’s been the source of some contention as its legitimacy has been debated and now its existence as a stand-alone disorder is in question. I’m not one for labels, in large part because they tend to be divisive but I firmly believe that we should be able to define ourselves as we see fit and the Aspie community has done just that — or at least they’re trying. In a time when thousands of people are trying to shake off one label or another, Aspies are clinging to theirs. Many diagnosed with Asperger’s fear that their collective identity will suffer a hit, even be lost entirely if they are to be lumped in with the Autism spectrum.

From Lindsey Tanner for the Associated Press:

Some parents say they’d welcome the change, thinking it would eliminate confusion over autism’s variations and perhaps lead to better educational services for affected kids.

But opponents — mostly older teens and adults with Asperger’s — disagree.

Liane Holliday Willey, a Michigan author and self-described Aspie whose daughter also has Asperger’s, fears Asperger’s kids will be stigmatized by the autism label — or will go undiagnosed and get no services at all.

Grouping Aspies with people “who have language delays, need more self-care and have lower IQs, how in the world are we going to rise to what we can do?” Willey said.

With any diagnosis comes assumptions preconceptions and often stigma. You are one of these, therefore I can expect this of you and these are your limitations. That’s the power of labels and that’s why some people are fighting so hard for some measure of control over the labels attached to them. While incorporating the Asperger’s diagnosis into the autism spectrum may have some benefits that are not currently available to those with an Asperger’s label, many disagree on how to amend the situation. Do we change the label or the distribution of services?  And what, if anything, is a reasonable trade-off?

Rebecca Rubinstein, 23, a graduate student from Massapequa, N.Y., says she “vehemently” opposes the proposal and will think of herself as someone with Asperger’s no matter what.

Autism and Asperger’s “mean such different things,” she said.

Yes and no.

Both are classified as neurodevelopmental disorders. Autism has long been considered a disorder that can range from mild to severe. Asperger’s symptoms can vary, but the condition is generally thought of as a mild form and since 1994 has had a separate category in psychiatrists’ diagnostic manual. Both autism and Asperger’s involve poor social skills, repetitive behavior or interests, and problems communicating. But unlike classic autism, Asperger’s does not typically involve delays in mental development or speech.

Aperger’s revolves heavily around social differences and many who embrace the label embrace those differences not as subnormal or abnormal but as very natural and normal leanings and behaviors viewed unfavorably “neurotypicals” (those outside of the autism/Asperger’s umbrella). While some connections may be made based on the many parallels between the two diagnoses, many Aspies fear the distinction in developmental abilities will be lost in the blur created by blending the labels. The change in diagnosis may prove to be a double edged sword in some ways. We tend to see developmental delays (as with autism) as being objective, legitimate and neurologically based while the traits of Asperger’s are primarily behavioral and lend themselves to a more hazy and subjective reading. For many, there is a struggle to link Asperger’s to autism as an established diagnosis while maintaining its distinction as not meaning limited or delayed developmentally. Still for others, especially parents seeking useful services and placement in schools, the question of perception has to be weighed against very real needs which currently hinge on the little numbered code that accompanies every diagnosis in the DSM.

As I’ve said, I’m not one for labels applied by people other than the wearer and I’m inclined to think the whole situation might be better handled if we throw the book out altogether. If the DSM and it’s hairsplitting, mind measuring scales and labels didn’t exist, what choice would we have but to see people as individuals and not as representatives of their limitations — real or perceived? No one should need to take on a label to get the help they need, least of all children in schools and no one should need to cling to a diagnosis because a collective identity rests in it. Autistic people, Aspies, neurotypicals and beyond, we are who we are despite labels, not because of them.

• • •

You may also be interested in:

Psychology Today: What does this change mean? Don’t people have the symptoms of Asperger’s syndrome any more? Of course that’s not the case. But let’s look at mental health problems as they are reflected in years of DSM editions…

NPR: Right now, the diagnosis often hinges on a person’s language skills. But that’s pretty subjective and can change as a child grows up, researchers say. “The categories are just not used by clinicians in a reliable fashion,” Lord says. A single category for autism spectrum disorder will let clinicians stop agonizing over which diagnostic category to put someone in…

The image at the top is a still from Adam Elliot’s brilliant film, Mary and Max, featuring the voices of Philip Seymour Hoffman and Toni Collette. Go watch it.


Entry filed under: Stigma, Uncategorized. Tags: , , , , , , , , , , .

Big Press Questions the New DSM Antipsychotics as a Deadly Weapon


  • 1. KHorn  |  February 17, 2010 at 10:37 am

    The value I see in keeping Asperger’s and Autism as separate diagnoses is in the ability of people to more easily find specific information related to the condition. Autism spectrum is a very broad range of symptoms and can be expressed in extremely diverse ways. Asperger’s is a much more specific range of elements. Because of this, someone with Asperger’s would be greatly hindered in finding information on their condition or communities of people like them if they were diagnosed as autistic and were forced to wade through the immense volume of information and groups related to all ranges of autism. This would also apply to those around them. School administrators and teachers may not as easily make the distinction between a diagnosis of autism with mental development issues and autism without such issues. Overall I don’t see these diagnoses as labeling people as much as a helpful guide in finding information and resources more likely to work for that individual.

    Your “can’t we all just be the beautiful people who we are, without labels” is noble, but I think diminishes the actual value of an accurate and specific diagnosis. By identifying people with similar mental, developmental, and behavioral issues, we can aggregate the type of information that will help those individuals and the people around them make the best medical, educational, behavioral, and lifestyle choices for themselves.

  • 2. abellve  |  February 17, 2010 at 11:12 am

    I suppose my take can often come off as maybe a little naive and idealistic (my words, not yours) and It’s not so much applying a name to groups of learning types or ways of socializing but how great an impact those names have that bothers me. You can have the same struggles with the current system as your classmate and be excluded from valuable services because you don’t have the same diagnosis/label. We should be assessing how individuals learn, not how their diagnosis says that group learns which is a pitfall of the current system. If they would focus more on individual behaviors than group expectation, they wouldn’t have to discern between diagnoses on scales but real world individual behaviors and tratis.

    I can definitely see what you’re saying about aggregating information and funneling into useful directions and manageable amounts but I think, at least in the current state of things, the problem is applying expectations and limitations with diagnoses rather than using them as a way for people in the system to communicate and also using them to decide what a person needs in theory when it may be contrary to what that person needs in practice.

    From the Psychology Today link that I posted: “What is the point of having DSM at all, if the categories of mental illness are so difficult to describe? To a considerable extent, the point is to simplify communication. For example, rather than having to write or read a lengthy narrative description of a patient, a practitioner can use a diagnostic category to give a general understanding of the problems that are giving concern. ”

    I understand the merits from that perspective but I think there is little benefit beyond that despite our behaving as though diagnoses define people. Anyone could write a book on this and, really, I think I just focused on one chapter. I’m not sure that we disagree as much as we come from different perspectives.

  • 3. KHorn  |  February 17, 2010 at 11:53 am

    I understand your point about exclusion from services based on (lack of) diagnosis. It is an issue I see everyday. Teachers are often limited by the diagnoses of students. Unfortunately no one seems willing to make the investment necessary to change our current assembly line style education system.

    As for the other points you raise, I certainly don’t think a diagnosis should define a person or even our expectations of that person’s behavior or learning style. Decisions and interactions should be based on individual needs. I think, though, a diagnosis of Asperger’s or other condition can help provide a starting point for a more individualized assessment.

  • 4. abellve  |  February 17, 2010 at 12:26 pm

    See, we really are closer to agreement than disagreement on this. My point is that a change to the assembly line education is necessary to remove the limitations of diagnoses. If we always choose minor changes within the system, we’ll never really overhaul it.
    As for the second part, we’re not at odds there in regard to some diagnoses (particularly legitimate learning setbacks) as long as the diagnosis really is a starting point and not the final point. Unfortunately, I don’t think that’s the case — at least not right now.. As it stands diagnoses DO define people both in public opinion and academic expectations. That’s where I’m saying a change needs to happen. It’s not unlike projections based on race (not a perfect parallel, but it’ll do). I’m not opposed to acknowledging race, of course — only to the idea that it’s the largest defining factor in a person. I think when it come to diagnoses, it’s too often and too easily seen as the almost singular indicator of what a person’s made of, largely due to a misunderstanding of the subjective basis of the diagnoses. We’re too multifaceted to be cut along such broad lines.
    For what it’s worth, I genuinely value your perspective as a real world educator and one of the few who is as passionate as you are about the direction of both students and the educational system.
    Also, if such diagnoses are to exist in the state that they do, I am also in favor of distinction between Asperger’s and autism.

  • 5. Marian  |  February 17, 2010 at 8:57 pm

    The way they are used today, I see most DSM labels more as a denial of individual life stories than anything else, and suitable only to alienate the labelled person from themselves and their experience, as well as others from the labelled person. Few people, if any, can really relate to a term like “schizophrenic”, everybody can relate to “desperate”, “confused”, or “angry”. Also it strikes me that the more disturbing, unwanted, the behavior, the more alienating the label: “anxiety” or “depression” are a lot closer to the actual experience, than “bipolar” or “schizophrenia”. Also on this level I see an attempt to shut people up, who otherwise might have something inconvenient to tell. You’re desperate, confused, or angry about a situation, but no one is “bipolar” or “schizophrenic” about anything. People are just “bipolar” or “schizophrenic”, and that’s it. No further questions. Thus people get stuck inside the label, so to speak, and all they can do is learn to live with it.

    As for Asperger’s vs. autism, here’s a different take on it, from a different perspective. It’s somehow the same snobbery, I sometimes experience the “bipolar”-community displaying towards “the schizophrenics”. Indeed, there was an outcry, too, when it was proposed to re-classify “bipolar” a “psychotic” disorder (whatever became of that).

  • 6. abellve  |  February 18, 2010 at 12:02 am

    You know, I never looked at it that way. The more extreme the state of mind, the more obscure the term — as if to separate it from more common human experience. This is what I’m saying, the labeling is so pervasive that even though I oppose all oppressive labeling, I sometimes miss some of the ways it manifests itself. It’s like I can feel my eyes opening every day.
    Yes, it seems there is elitism across the board. Everybody has to be higher up or better off than somebody. God forbid any of us find out we’re all on different points of the same human spectrum. As if labels weren’t enough, now we need scales.
    Thanks for posting and for the link.

  • 7. markp.s.2  |  February 21, 2010 at 3:38 pm

    [start rant]
    The purpose of giving someone a (named) mental illness is to have power over them. There is no physical illness for a medicine to affect. The person is not behaving within the normal standards of society, yet is not doing anything illegal, so they must be helped to be normal.
    Doctors have left the field of medicine and are judging what is right and wrong in human behaviour, and there is no one to stop the “help”.
    Supply and demand, demand and supply.
    Drugs and the desire for these known drugs, The demand for drugs makes drugs invented and produced.
    Master needs a slave, slave needs a master.
    Originally psychiatrists helped people needing help, like a parent educating their child.
    But now I think the supply of Pharma drugs is making the supply of patients. Drugs for money. Addictive drugs.
    The master is making the supply of slaves with (false) claims that chemicals can make people sane or have better lives from a magical pill. If someone is a day dreamer and you stop their daydreams, they likely become a depressed machine.

    But we are all insane until the day we die, we must be slightly insane to live with the knowledge of our inevitable death, yet still enjoy life.

    Mental illness is
    1)Emotions out of control of the intellect 2)Chemically controlled 3)Machine unhappy or severely disabled by the chemicals so it no longer living life. 4a) Return to (1) or 4b) a 25 year (average) earlier death from all the lies of brain chemical imbalances.
    [end rant]


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