I, and a lot of people in the autism community, use terms such as “high-functioning” and “severe”. What are they exactly, and how can someone who is supposedly fully functioning have a disability too? I could get into the etymological meanings of each word, which doctor in the medical field coined them, what they meant by that, and what kinds of people are described with those terms. I won’t do that however; that’s what dictionaries and Wikipedia are for. Instead, I’ll talk from experience I’ve had with people in the world, people from Special Olympics, people from regular high school and people who found their own way through life.
Everyone has different levels of ability, even a completely average but well-off business-class person couldn’t match wits with Stephen Hawking or stand a chance against Usain Bolt in an endurance contest, in spite of what my or anyone else’s mom says. Also, both men would be outmatched in the other’s respective field of work, and everyone can agree that Stephen Hawking is disabled because of his ALS. Yet, he has made several integral contributions to our species’ knowledge of the cosmos, including his discovery of the aptly-named Hawking Radiation, which is predicted to emanate from black holes. In this case, Hawking’s work helped to solve a problem previously observed in black holes, where they seemed to breaking the laws of physics. All those accomplishments, and he can’t manage a flight of stairs.
In the case of Hawking, a lot of people would say that he’s physically disabled, but that doesn’t affect his mental abilities. That is very true, but it is an easy trap to follow this reasoning with, “You can be physically disabled without it affecting your mental capacity or vice versa, but you can’t be mentally handicapped and a normal person or physically impaired and still be athletic.” To that, I would point to the Paralympics. Again, if we take that generic normal dude and throw him in the water with the world’s best Paralympic athletes, he’s going to get taken to school. That doesn’t mean that life is easy for people who are missing limbs or afflicted by conditions such as Cerebral Palsy, and many of those Paralympic athletes face every day challenges the normal dude would never have to face.
How does this all apply to that odd, confusing and somehow condescending term, “high-functiong”? Well, in Autistic disorders, these differences in ability that we just talked about are more pronounced. That’s because, unlike other intellectual disabilities, it doesn’t just delay a person’s mental age, or have a well-understood mechanism. Sometimes it does, sometimes it doesn’t, whereas others are normal but have no clue how socializing works, or they can’t speak and are prone to violence, so we really don’t know how much is really in that person, etc, etc, etc. Doctors found that Autistic people shared a few core traits that must have been caused by the same condition, but with too much difference between them all to fit everyone into a single category.
There was a lot of variance in patients diagnosed with Autism, yet too many of the cases studied had too many similarities to categorize them as a multitude of separate conditions. Asperger’s was later classified as a different-but-related condition, although that didn’t account for the still-huge amount of Autistics with varying degrees of everything. Even one person, such as myself, can jump from one end of disability to another over their life. So how did the doctors and therapists clear things up for everyone?
High-functioning literally means that the individual can do a lot him or herself. They can eat, talk, move around, wear clothes, think and generally live without an assistant. Others who were–and are–more held back by their disorder, and struggle with it to live a normal, functioning life, they’re severely affected by their condition. That’s where the terms came from. I use them because they are actual differences in people’s intellect and mental age–and other forms of development–but they’re medical enough to not be offensive or dirty-sounding.
In my life, I went from what any doctor or child physician would call “severe”, to someone who would be described as high functioning. When I was kid, I was the frightening, problem child that would appear in melodramatic charity ads and award-winning drama films. I was set off at the slightest bad touch, way behind in my age development, wouldn’t eat, was non-verbal and prone to rages to communicate my stress. The latter problems–in both myself and people I know–was ratified with sign language that helped my brain grow a part that could use spoken English.
The rest is a story that I’m all too tired of telling time and time again, for this blog and other places. Years of hard work from my loving family, awesome support workers and teachers, aid societies like Special Olympics, and myself, I became who I am today, which is leagues ahead of the what the doctors said I was capable of, Dustin Hoffman wins the Oscar. Writing this, I have come to realize that I have a rather cynical look at my past.
I know that many of my problems today are caused by my Autism, but whenever my childhood is brought up, it doesn’t help much. To me, it’s like hearing, “It’s okay that you’re struggling now and may not reach your goals in life, but you were super f%cked up as a kid so it’s a miracle that you’re even talking”. Also, I don’t like the way our society takes stories such as my own and twists it.
Just because I went from severe to relatively “normal” doesn’t mean that’s a realistic expectation of other people who are Autistic, or disabled in any way for that matter. But because so many “inspirational” news articles give the implied message that all disabled people can eventually live a normal life in spite of their condition, almost as if their condition doesn’t really mean anything. In telling my story as a formally severe Autistic, I hope I haven’t made my life seem like that or disparaged anybody who had a worse luck of the draw than I have.
If there’s any good moral lesson to take away from my childhood, it’s that “severe” and “high-functioning” aren’t hard terms. Three year old me was definitely the former, present me is the latter, but the Callum I was in elementary school fit somewhere in the middle, or was both. What I was would depend on which doctor you spoke to.
Terms that define what “severe” and “high-functioning” mean are necessary. Pretending like there isn’t a difference in people’s abilities–or saying that some adult people don’t have the mentality of a child–is a polite fiction. It’s also harming the people they’re supposed to protect, by denying them their human right to receive extra aid in exchange for those intellectual or physical impairments. This is like saying they have nothing to compensate for. I have different needs in my journey to University than a severely-afflicted Autistic would have just to get through their day, but that does not invalidate either of us or make one more of a priority over the other. Maybe “high-functioning” and “severe” aren’t the best terms to use, but, they’re what is commonly used and right now, they’re all I’ve got.