This post is about pigeon holes.
I have AS. I am in the process of being re-diagnosed as HFA, or Autism Spectrum Disorder, or whatever it will wind up being called on my chart given the changing terminology. But I also fit the criteria for NLD and MDD.
MDD is a research categorization, not an official diagnose. It stands for Multiplex Developmental Disorder, or Multiple-complex Developmental Disorder. It combines the behavioral profile of Autism/Asperger’s with emotional issues like anxiety, depression, OCD, and psychosis. It fits me as comfortably as a glove. It is, if you will, the social-emotional-behavioral profile for my particular expression of Autism.
NLD is nonverbal learning disorder. It’s a neuropsych profile. There’s about seventy point spread between my verbal IQ and my nonverbal IQ. When I take the Raven’s Progressive Matrices, I score Intellectually Disabled. NLD is, essentially, the neuropsych profile for Asperger’s and a subset of Autism–the subset where verbal skills are not at issue, the subset consisting of those of us who “think in words.” The kind of Autism that often isn’t recognized as Autism, because “we can talk.” Our communication is recognized as valid and thought of as typical. We don’t see in pictures, so our spatial-visual abilities are horrid. We don’t fit the stereotypes. Some people don’t think of us as Autistic at all.
But people see what they want to see. They see a kid in Lifeskills and they see someone who is “hopelessly retarded”, “profoundly disabled”, “without a future, beyond hope.” They see a girl in Honors English and they may hear her humming, but they don’t process her banging her head. They expect her to be neurotypical, and so that is how she is seen, that is how she is processed. “Julia isn’t learning disabled. Julia isn’t Autistic. She’s just sensitive.” Neurotypical people can usually get away with interpreting people through their behavior and assuming that the behavior arises from a mind organized basically the same way as theirs. If it becomes obvious from appearance that the brain is different, the person gets written off. Labels are given to them that don’t apply, abilities are underestimated, and stereotypes are invented and plastered all over everyone into oblivion, obliterating any shred of personhood left.
I get pigeon holed as typical when I am anything but. They get pigeon holed as hopeless when their is so much potential there. When “pathology” is recognized, that’s all anyone sees. When it’s not thought to be part of the picture, no one sees any.
My head is in a fog, but I need to get this down, this is important.
This is what happens when you think of Autism in terms of social and repetitive behaviors, and not in terms of neurotypes. People get pigeon holed, over- and under- and mis-diagnosed. Their attempts at communication and connection and learning are ignored, misinterpreted, just plain missed. Cycles build, and feed on themselves. And the descriptions and diagnostic criteria do not fit the actual syndromes.
Autism is a neurotype. So why is it in the DSM? The DSM is for mental illness and disorders, not cognitive, neurological types. Autism doesn’t belong; one of these things is not like the other. Autism is a cognitive disability. It’s not a mental illness. More and more, I come to think that what we call “Autism” is really a bunch of different neurological things thrown together. Which is fine, but we’re not going to get it sorted out as long as ASD remains in the DSM. As long as we keep being pigeon-holed.
Autism is about communicative differences and difficulties, about sensory differences and difficulties, and about executive function/impulse control/central coherence variations on a theme. Difficulties with hemispheric integration explain why Autists tend to be either spatial-visual or verbal thinkers, with great difficulty in thinking in a different mode. It explains why pragmatics can be such an issue when grammar is fine. And central coherence explains the rest, if I’m understanding it properly.
The social behavioral stuff is all an outflow of that, and of trying to communicate and connect in a world dominated by very different people. Communication problems can range from meaning-blindness to oral-motor difficulties to SLI to difficulties with real-time communication, echolalia, finding the right words, and selective mutism. Connection issues seem to have less to do with overt joint attention and social referencing and more to do with speaking the same nonverbal language and having similar interests–the same ingredients of connectivity in typical people, imagine that. “Repetitive behaviors and interests” are no more fixations, no more “more rote than meaning” than small talk is.
What I’m doing here, what I’m doing on this entire blog, is searching for a proper goodness of fit. The DSM criteria does not, and never has, fit well. Newer thinking is needed. Concepts like NLD and SLI need to be integrated into the Autistic gestalt. Rather than a broad phenotype of “Autism” examined in light of social and behavioral differences, it is more useful to develop and look at specific emotional-behavioral and neuro-psychological profiles. Key underlying differences will unite everything into Autism, but goodness of fit needs to be adjusted. It needs to be recognized that everyone’s Autism is different, that there is more to it, so much more to it, than surface behavior, and that pigeon-holing only frustrates those you could be helping.
Julia Bascom’s Goodness of Fit first appeared on her now-defunct blog, and is resurrected here with her permission. Julia also blogs currently at flashback dream sequence.
(image: Pigeon Holes, lipseng’s photo arts gallery)
related: Time for this Elephant to Leave this Circus
Julia Bascom on 08/9/10 in Autism, featured | 1 Comment | Read More
Comments (1)
Here, here! I thoroughly agree that autism needs to move out of the DSM. The difficulty with creating an evolving definition is that it would entail the “experts” listening to our subjective experience, rather than interpreting our behavior. And listening to our subjective experience would mean ceding power to us as we describe the nature of our lives. I think it will happen, but slowly.
I also agree that there are different permutations of abilities that come together to create an autistic neurotype. I always thought of myself as a strictly verbal thinker, with very poor visual/spatial skills, until I figured out that my fascination with the written word had a great deal to do with translating a very difficult auditory experience into visual symbols. For the first 50 years of my life, I was so focused on this necessity that my visual acuity was entirely lost to me. Now, after almost two years of giving myself permission to block my hearing when outside, I see that I actually have some very good visual/spatial skills. It’s uneven: I still can’t hold a map in my head, but I can do realistic drawing and painting and have good intuitive 3-D composition skills for photography.