High-functioning autistic or autistic?

The world of autism is constantly changing when it comes to terminologies. We know that Asperger was a term used to define high functioning autism spectrum disorder. Unfortunately autism is so poorly understood and the challenges are perceived as so black and white that just verbal struggles are used to describe if someone is high or low functioning. That is how usually autism is quickly categorized.

When in actuality, a high functioning verbal autistic may have no idea what pragmatic language is, may not be able to carry a conversation and may have massive struggles with social communication. They may also have huge sensory and emotional struggles that make their verbal skills almost a nonachievement. They may have much more to address in terms of sensory and behavioral issues than a presumably nonverbal or low-functioning autistic. Of course this isn’t a universal rule.

I have also observed another drawback to categorizing autism like this. High functioning autistic is considered a “quirky” friend. Just someone who would be slightly off in terms of their jokes and expressions. Someone who is interested in mathematical problems and science projects but may not have a lot of “interest” in English literature. They may have some idiosyncrasies, an odd behavior or two, a loving but generally awkward relationship with friends, but overall a promising future in the career of their choice. They’re also unanimously considered to be able to live independently in adulthood.

But that’s not true! Just as all typical individuals don’t have similar career paths and skills, autistics also fall within a wide range of the spectrum. Their lives are individual lives too. Their trajectories have significant variation too.

The depiction of autistics in popular media doesn’t help. They’re usually shown to be either math geniuses or unable to blow their nose. This isn’t true. As a mother of an autistic who knows many autism parents and “real life autistics” I can tell you that this spectrum, if possible, is even more varied than the typical spectrum.

Of course I can’t blame the use of high-functioning autism on popular media alone. High-functioning is a very commonly used term by parents. I have even seen some not-so-nice behavior in this regard from some parents regarding how these individuals should be accommodated more than the low-functioning autistics because therapy might help them more and because they may have a purposeful life.

No one, not even the most astute autism expert, can reliably predict the future of an autistic. To be perfectly honest, no one can predict reliably the future of any person, for that matter.

I see how high-functioning is reassuring. I have used that term for my child. I believed that for my child when she had more words than the typical child had at her age. I realize that expression has no use now when she hasn’t been able to keep up.

Calling a kid high-functioning is descriptive for some people may be but also confusing. What are they functioning high in? Is it language, academics, social behavior, or life skills? Are we calling them high-functioning in comparison with other autistics (yes usually we are)? Are we somehow assuming that this child, by virtue of being higher functioning would continue to function better than most autistics or may even fare better in life when compared to typicals? Are we somehow leaving this child to his/her own devices without really identifying many areas of struggle that they may encounter on a daily basis? Is this child an independent learner? Would this child have awareness of danger? And lastly, my personal angst with this term. Are we calling these kids high-functioning, then forgetting that they still have autism, removing supports and therapies when they make progress by leaps and bounds, identifying them as regressing a year later and worrying whether the box of function we put them in was accurate? Are these kids more prone to meanness by other kids because they aren’t so different on the outside and mainstreamed much quicker than autistics with bigger challenges?

My personal belief is that because we know that autistics have a different neuronal wiring, every accurately diagnosed autistic, on deeper analysis of their strengths and weaknesses and day to day life, may have more similarity with their autistic peers than with their typical peers. Some of them might occasionally cross over into the typical spectrum every now and then but a true autistic, even with amazing therapies and supports and developmental trajectory, will maintain a closeness in cohort with their autistic peers. This makes categorization within autism somewhat purposeless to me. What would ultimately bring me more trust in the progressive thinking of the autism experts is trying to unlock the various forms, types and genotypes of autism and not just classifying everything under one umbrella. That’s where the efforts should truly lie for us to make a real difference.