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Who Falls in the Gap?

  • Posted on October 4, 2010 at 10:38 PM

A recent discussion with Mark Stairwalt on Shift Journal produced this statement:

“And given your premise — which seems to be that autism is wholly beyond the ken of anyone not so diagnosed — your conclusions follow clearly enough. If we do start from the premise, though, that the experience of being autistic is a discrete phenomenon, a spectrum which *ends* at the edge of a wide, abrupt, and colorless gap rather than shading into the experience of the larger population, then it is we who have cut off the autistic population from the possibility of being understood and accepted as human — that’s not to be laid at the feet of anybody else’s shallow understanding, or the inscrutability of autism.”

Luckily, that was not and is not my premise.  (My premise, as per the discussion, was that “autistic” should not be used to reference stereotypical traits, like body rocking or heightened focus, that do not describe what autism really is.)  More generally speaking, my philosophical premise is that the autism spectrum resides wholly within the human spectrum, that they are connected, interlinked and overlapping.  For example, I consider myself to be too autistic to be neurotypical, but too neurotypical to be autistic.  (While I am autistic enough to identify quite well with my children, it is very rare for my autistic traits to interfere with my daily life.)

However, my beliefs regarding what should be seen aside, in our society there is a gap between “normal” and “autistic” that leaves many people cold—under-served, un-assisted and lost in the wilds between unfunctionably autistic and functioning well.  (This is not said to suggest that autistics are unfunctionable or that they should be seen as such, but merely to assert that this is a dominant belief in the larger population.)

As this news release states, some of the people who fall in this gap of “between” are, in fact, diagnosably autistic.  This news release, and the Swedish study associated with it, focuses on the under-diagnoses of girls with neurological differences (my wording, not theirs), including autism and ADHD.  In areas of the world or at different economic levels, diagnoses can be difficult for both boys and girls to obtain.  Furthermore, there is the obvious gap between how many adults could qualify for such a diagnosis and those who have access to a diagnostician who could give it to them.  Thus, some of those who fall in the gap are actually on the autism spectrum.

Along with those who qualify for the autism diagnosis, this study (as found in NPR) suggests that there are those, specifically siblings of diagnosed autistic children, who have autistic traits that either do not qualify for or do not receive a diagnosis of autism.  This article focuses on language delays and speech problems, but I’ve read elsewhere that sensory processing disorder is also more likely to occur in siblings without an autism diagnosis.  This suggests to me that if the language and sensory facets of autism can occur independently in siblings (and probably others), then the social facet of autism likely occurs independently as well.  All these facets of autism are not attributed to being traits of autism when experienced independently of each other—which suggests to me that they individuals also fall in the gap “between” autism and normality, where services and accommodations are difficult to obtain.

It is my hope that our society becomes more aware of the way the autism spectrum overlaps and interlinks with the human spectrum, and that the more we do so the more we will appreciate, accept and facilitate neurological differences—both those pronounced enough to be labeled “disorders” and those subtle enough to fall in the current gaps of awareness.  I know my life would have been a bit easier if both I and others were more aware of my sensory processing and social differences earlier in life.  For me, it took having three children with autism to discover how close to the autism spectrum I was and to accommodate myself accordingly.  Which is not suggest I have any horror stories—I don’t—but understanding oneself and being able to communicate that understanding to others creates a richer, more “right” life for all of us.

Somehow we need to close these gaps and stop letting people fall through into the abyss of not knowing and not being known.