What is severe autism?
1st October 2021
Many have critiqued the term ‘autism spectrum’. Some say that it is misleading because it implies that a person’s autism is on a line that ranges from mild to severe.
Whilst it does seem to be the case that you can have mild or severe autism, it’s not as simple as having a ‘small amount’ of autism up to a ‘large amount’ of autism.
Autism isn’t a ‘thing’. It is an umbrella term for a range of different experiences people have due to different (in an almost infinite range of ways) underlying issues that together cause difficulties with social interaction among other things.
Is it as simple as mild to severe autism?
The term ‘severe autism’ is generally reserved for those with learning difficulties and high support needs. It generally refers to people who are unable to speak and who are unable to communicate their needs in ways that do not involve ‘challenging behaviour’.
However, I have certainly observed people with learning difficulties and high support needs (therefore seen as severe) who can interact with other people much better than some so-called ‘high functioning’ autistic people I know, or those seen as having ‘mild’ autism.
There are also people like Ido Kedar, Naoki Higashida, and Lucy Blackman, who were diagnosed with severe autism and have high support needs, but who certainly do not have learning difficulties.
The people above have written books and demonstrate a very good understanding of people. Their autism is primarily a problem of sensory motor issues: until they were taught to point to a letter board (and thus express themselves and communicate), they were unable to demonstrate just how intelligent they are.
The ones I mentioned who are classed as having mild autism yet fundamentally struggle more to interact with other people than those with learning difficulties and/or sensory motor issues are often seen as having ‘mild’ autism. This is simply because they can walk and talk and can appear to sort of behave like other people. These autistic people’s severe difficulties are usually hidden, nuanced, and are mitigated by high intelligence and good problem-solving skills.
For example, there is Donna Williams, who was diagnosed with ‘high functioning autism’ in her 20s. When attempting to express her needs, she tended to ask for something other than what she was intending. You can probably imagine how this is a severely problematic issue that can easily be hidden and/or disregarded as important.
Donna Williams did manage to live independently, earn a living, and maintain long-term relationships. Yet, her life experiences were so very different from the norm that when she wrote about her autism, her books were difficult for non-autistic people (and probably many other autistic people) to understand.
Was her autism severe?
Think about this…
Imagine you have two autistic people whose autisms (underlying autistic issues) are the same. One has high support needs, and the other can live independently (although does have some support needs).
The one who has high support needs also has learning difficulties and is generally very happy. They have regular support in support accommodation that meets their needs, they are not expected to live up to the demands of life, and are as a result able to live in their autistic world quite happily.
The one who lives independently is extremely intelligent and as a result, can problem-solve their way through much of life and is therefore expected to. They do manage to ‘participate’ in society however this comes at a huge cost to them as the level of energy it takes to cope with everyday life and work can be crippling.
Does it make sense to say that the one who receives high levels of adult social care support has severe autism, while the other one doesn’t? Hopefully, you can see the problems with this line of thinking.
The key difference between the two examples of autistic people above is the level of intelligence and arguably, the determination to contribute to the rest of society. There are people with autism who do not have severe underlying issues yet simply prefer not to put the work in to get something from life (as is the case with many people without autism!)
It gets more complicated than this. We know an autistic person who can live independently by herself, however, when something that requires problem-solving comes up, such as needing to replace an appliance or piece of furniture, she needs intensive support. She needs assistance to budget but can then follow the created budget. This means her support needs for day-to-day living are quite low.
However, she processes incoming information so slowly that she is unable to understand what is going on around her or what people are saying to her. This can lead to issues such as with the job centre when she appears to have agreed to something, which she has not understood.
That can cause her serious issues such as having her much needed disability benefits taken away.
The combination of her managing to live independently and appearing as if she has understood when she has not, leads to her not being given no state support for her disability.
Is her autism severe? Yes, it is. But according to current ways of thinking about autism, it is not.
Ido Kedar, mentioned above, was (eventually) able to benefit from mainstream education. For a while, he was put into a class with “high functioning” autistic people. He could not get on with them. All he could say was that his autism was nothing like theirs. He understood people and social interaction; they did not have a clue about this.
The problem is that autism is not linear and the amount of support needed is not necessarily an indication of the severity of the autism. Autism is an umbrella term that includes many different kinds of difficulties.
For some people, only those autistic people who never learn to speak and who have very high support needs have ‘severe autism’, but for others, the situation is more nuanced. Some people wonder how many of those who never learn to speak could have been taught to communicate by pointing at a letter board. Unfortunately, such training has been ‘debunked’ and thus many of these autistic people never get the chance to see if it would help them.
Wouldn’t it be so much better if there were ways to determine just which underlying difficulties an autistic person has which explain ALL their symptoms? Wouldn’t this help to ensure that specific interventions are chosen that will help this person?
Instead, we have a free-for-all of different interventions all of which claim to help ALL autistic people – something that is an impossibility.
We have a long way to go!