Friday, September 24, 2010

Have you heard?

Adults on the spectrum are really getting up in arms about the DSM-V.

Oh, you say you haven't heard? They APA is proposing to do away with Asperger's Syndrome.

Now that's a short life for a disorder. Asperger's, its tomb stone will read; 1994-2012...ish. Because let's be honest, we don't know for sure when the new DSM will actually come out.

But people sure as heck have latched onto the name. Aspies (shudder). Aspergians. Call them what you will. Personally, I refuse to call them anything but people with Asperger's (Syndrome). I think changing the name of a disabling disorder to make it cute and fun is ridiculousness. I feel the same way about people calling diabetes "'betes" or "the 'betes," as kids and counselors used to do at camp.

Now in case you're shouting and flailing at your computer, "But you can't speak on this subject! You don't even have Asperger's!" Well, if you want to be very technical, no I don't. But my neuropsych's office isn't all that technical. Rather than basing a diagnosis on early development (i.e., taking into consideration early language acquisition or acquisition of self-help skills), they look at the adult's current language skills. And now, I very much fit the bill of Asperger's, so that's my diagnosis at that office.

Now that I've got all the preliminary stuff out of the way, let me go on to explain my thinking about the recategorization of ASDs in the DSM-V.

Point 1: Asperger's and autistic disorder have much more in common than not.

Point 2: The age at which a child develops language or given self-help skills is an extremely poor indicator of that person's command of language or self-help skills as an adult.

Point 3: I keep hearing adults with Asperger's who argue something like this: "But I don't want to be lumped in with them." Them being "low-functioning autistics." Just as I do not believe in "Us vs. Them" in terms of autistic and not autistic, I (perhaps unsurprisingly) dislike even more the proposal of diving up the autism spectrum on an Us vs. Them basis.

Point 4: Not all people with Asperger's are more independent, more intelligent, more social, more... you name it... than people with autistic disorder. I know many people with Asperger's who can't hold down a job, carry on a conversation, or graduate from high school. I know people with autistic disorder who supprt themselves financially, live completely independently, and hold a college degree.

Point 5: If someone is that bent on dividing up the spectrum, then why pick early language acquisition and self help skills? Why not:

- absence or presence of mental retardation based on standardized IQ tests?
- hyposensitivity or hypersensitivity to sensory stimuli?
- level of verbosity as an adult?
- ability to live independently or the lack thereof?
- absence of presence of early regression?

Point 6: Who honestly wants to tell anyone that they have assburgers? Suddenly, that Aspie thing isn't sounding quite so bad...

I don't think that we've hit the nail on the head with ASDs as of yet. Now, I have not thoroughly researched the topic, but I'm leaning toward the idea that there is not one autism. Rather, I'm wondering if there are not various autisms.... environmentally-induced, vaccine-induced, allergy-induced, prematurity-induced, etc.

But until we can figure all of this out scientifically, and from that I think we are many years away, we have to stick with the idea of syndromes, or a collection of symptoms, regardless of cause. Because we can't differentiate based on cause, all we have is the results, the symptoms, by which to diagnose. People who, more or less, have the same symptoms have the same syndrome or disorder.

And I think autism spectrum disorder is the best we can do with what we have.


  1. I completely agree with every single point. Especially #6. haha. But at the end of the day, it's not about the label. It's about the person.

  2. You might just have something there with the -induced designation. In our family it is epilepsy-induced. The problem is that even in spectrumites induced by the same cause, there is a wide range of effect--not everyone in our family with syptoms has had visible seizures, some just have the aura of seizures and are still affected. Or the seizures come on at adolescence, but the child is nonverbal from age three--so were there seizures that no one recognized as seizures? My father, who had seizures at 15, eventually outgrew them, but at 83 was diagnosed with a type of dementia (lewy body--deposits in his temporal lobes) that his early seizures should have exempted him from the criteria of. And I have a daughter who has undiagnosed PDD-NOS and did not have visible seizures, but had an aura (her older sister had the seizures--so we knew what a seizure aura is--and has Aspergers but is higher functioning). So the medical profession seems to be able to make the criteria fit when it's convenient but deny it to people who need help. They deny help in a way that seems unscientific (and random)(e.g., you will often hear licensed and practising pschyologists repeat the myths about autism and demonstrate their own lack of familiarity with the criteria of a disorder they are still qualified to treat). Oh the humanity!

  3. I also agree with everything you said. Except I like calling myself an Aspie. Mostly because I have a problem with words like Syndrome and Disorder. :-)

  4. I'm not sure why you have a problem with a word like "syndrome," because that's what it is. A collection of symptoms. It's vaguely reminiscent of wizards being afraid of Voldemort's name...

  5. People with Asperger syndrome can find it harder to read the signals that most of us take for granted. This means they find it more difficult to communicate and interact with others which can often lead to high levels of anxiety and confusion.

  6. Thank you for sharing your perspective on Autistic Speaks. Your insight into the experiences of those with autism is both enlightening and valuable. It's crucial to foster understanding and create a supportive community. Your words contribute to breaking down barriers and promoting inclusivity. Quality Behavior Solutions, Inc.

  7. Autistic Speaks amplifies diverse voices, promotes understanding, and fosters empathy. Their advocacy and support contribute to a more inclusive and compassionate society. Awc Behavioral Health LLC