Definitions or labels within autism are no longer useful. What do high functioning or low functioning actually mean? If they were vague labels before, now they are almost meaningless.
When my older boys were diagnosed 17 years ago, they were non verbal, they had no eye contact, they had screaming tantrums and no form of communication. Their diagnosis was autism. Childhood autism. The term for children diagnosed by the age of three. Severe autism.
After a few years of ABA (Applied Behavior analysis) and a lot of patient and intense parenting, they began to speak and to communicate. They were able to learn when skills were broken down into tiny stages which is how we used ABA to teach them. We didn’t sit them at a desk and drill them, we just broke down everyday actions and everyday language into tiny manageable steps. We realised they could learn with the right support and they then became ‘high functioning’ which basically meant that they had average or higher than average IQs. This appeared to mean that they did not have learning difficulties.
Learning difficulties are in many children a part of their autism and not a separate diagnosis. My boys on testing fit into a category of having high IQs but in reality they are unable to follow fairly basic instructions like cooking recipes.
As a very basic definition, back when they were younger, ‘high functioning’ autism was the label that fitted them the best in comparison to ‘low functioning’. Not a pleasant sounding term but the only one that existed to try to categorise those children with ‘severe’ autism. No child should be thought of as a label but these categories enabled parents to better fight for the education and support their children needed.
HIgh functioning is no longer an appropriate label for my boys. It is now being used for those with what used to be called Aspergers. Now that autism has been rolled up into one all encompassing diagnosis, there aren’t enough definitions to go round. Do I call my boys high functioning with severe language disorder perhaps? That still doesn’t define their needs.
Severe autism is no longer a useful label either. What does severe mean? To the parent of a child who cannot be left alone for a moment, who self harms, who needs help to get washed and dressed, who has no method of communicaton except tantrums, severe may be the only word they can use. To the adult or teenager with a late diagnosis who has severe anxiety and may be suicidal, severe may also be applicable. They cannot function either and are also in danger to their lives, but in a very different way.
Perhaps we should stop defining autism by labels.
We should perhaps identify needs. Rather like when completing a PIP form or DLA form, we need to actually spell out every need our child has. That was also the aim of the EHCP (Education, Health Care Plan), to identify needs and try to fulfil them. What use is a label if you don’t get the education or support you need?
With language testing, percentages can be assessed and may be useful. If I say that one of my sons on testing scored 97 percentile non verbally on tests but 3 percentile verbally does that help you understand better what his needs might be? He has what is known as a ‘spiky profile’. While I don’t personally like labels, at times, this little nugget of information is something I can roll out to people to aid their understanding of him.
I also try to explain how this works for him. If I were to go to live in China tomorrow, I would not be able to communicate verbally, to answer the telephone, read a book, watch a film, even order food in a restaurant or ask where the bus stop is. But…that does not alter my intelligence. I am still the same person I am in the UK but one stripped of communication. That is how I imagine it feels for him at times. I cannot say that 100%, I am not my son. No one is my son. Everyone with autism is an individual. No one can speak categorically for another but some of those, like us parents who have lived with our children for every day and hour of their lives, come the closest to understanding our own children. This is the best definition I can come up with.
There are no labels or diagnosis that fit our children and young people any more.
But there are many needs.
– Photo of Thomas being supported to pin his race number on, get his shoes tied tightly, time his warm up, be reminded to drink water. Support so that he can fulfil his desire to run. So many needs which are not obvious to those who do not know him well.