I’m part-way through the journey of getting diagnosed with “High Functioning” autism. It used to be called Asperger Syndrome, but it seems the medical folks have decided it’s part of the autistic spectrum rather than a distinct syndrome. It’s not a label I want, because I don’t believe that it’s a fair way to categorise autistic people.
Let’s start with “Low Functioning” autism. Within this bracket, experiences of autism are still a spectrum. One person might experience delays in developing the ability to live independently, or might need only occasional help with their daily needs, whereas another might need a full-time carer for the rest of their life. We categorise based on verbal ability and performance on intelligence quotient tests. When we say “Low Functioning”, we imply that people who live on this part of the spectrum, with these types of symptoms are less than. With this kind of terminology floating around, it’s easy to think of autistic people as being inferior to non-autistic people. For me, “Low Functioning” represents the assumption that because a person can’t express themselves verbally, that they don’t understand what we say about them. It represents the assumption that because someone doesn’t think about a set of examples or tasks the way we do, that they are less capable of thought. This isn’t fair to people who experience autism in this way. There are nonverbal people out there who can express themselves (and their displeasure at people’s attitudes towards nonverbal autistic people) through typing, There are people who need help with their daily needs with beautiful creative minds who can produce works of art that have attracted the attention of art collectors. To call them “Low Functioning” simply because they don’t communicate the way we expect them to, or need others to care for them is just insulting.
Check out Iris Grace, a nonverbal autistic five-year-old. Just her control over where she’s putting the paint, the deliberate way she works says that there is a beautiful mind inside her. These aren’t the random and talentless daubings of a child who just likes to smear paint on paper as a cause-and-effect experiment.
So how about the description “mild autism”. This one usually comes out when an autistic person can pass for neurotypical most of the time. It’s a lot like “High Functioning”, in that it ignores the sometimes invisible and often very upsetting difficulties an autistic person can face whilst trying to navigate the neurotypical world. It minimises the painful experiences of people experiencing autism who feel lonely and alienated because their quirks and peculiarities are not well tolerated by their social groups. Mild implies that people with this experience of autism are less affected by their symptoms. It subtly includes the expectation that a person with “mild autism” should be able to control their symptoms and differences to fit into society better. As anyone with “only mild autism” can tell you, having a different or less noticeable set of symptoms does not make it possible to choose not to experience a symptom at a given time.
Then we’ve got “High Functioning” autism. This represents the end of the spectrum that used to be called Asperger Syndrome. It’s characterised by higher than average scores in Intelligence Quotient testing, intense interest in specialist fields, and increased difficulty managing in social situations. Calling people who experience autism this way “High Functioning” minimises their experience too. They might be high-scoring on intelligence tests, and capable of expressing themselves fluently, but they may still need frequent help day-to-day with things that we don’t think about. Imagine being a university graduate with a degree in a hard science, but needing help following the order of a cooking recipe, or being unable to go anywhere you haven’t visited before without someone to show you the way. Calling us high functioning ignores the daily struggles we face.
To conclude, “Low Functioning” ignores the amazing abilities of people diagnosed at that end of the spectrum, and “High Functioning” and “mild autism” erase the difficulties experienced by people diagnosed at that end of the spectrum. When you take into account that autism presents in many different ways, and that no two people experience it in the same way, does it seem fair to lump us into “less autistic” and “more autistic” pigeonholes?
I suppose the next question is how should we categorise experiences of autism?
Personally, I prefer “High Support Needs” and “Low Support Needs”. It accepts that we have differing needs for support, and that we all need some kind of support. The word “support” has fewer negative connotations than “care” in that it suggests an amount of independence. I’m not saying that this is absolutely the right language to use; you should always ask the autistic person what label they prefer, but I strongly believe that we need to put more thought into how we describe the autistic people in our lives in order to recognise both their needs and their abilities.
Edit: Iris Grace is 5 at time of posting, not 3.
After reading the experiences of other autistic people through the #HighFunctioningMeans #LowFunctioningMeans and #FunctioningLabelsMeans tags, it occurred to me that a preferable approach would be to use topic-specific labels. Pigeonholing people into two groups and then making assumptions about their abilities seems entirely ridiculous when their needs, interests and abilities can be so diverse. In addition to “High/Low Support Needs”, for use when discussing an autistic person’s needs, I propose “speaking/non-speaking” or “verbal/nonverbal” (already in use), and “Autism with/without intellectual disability” to replace functioning labels. I’d suggest using a label that’s relevant to the topic at hand, so when discussing intellectual ability, reference only that. A person can have no intellectual disability (“High Functioning” under the functioning labels) but still have high support needs. Intellectual disability is a phrase I picked up on Autistic Hoya’s Autism FAQ, and appears to be the most accepted term. Considering that intellectual disability is present in people without autism, and autism is present in people without intellectual disability, can we really assume that intellectual disability in a person with autism is part of the autism and not a co-occurring condition?