There’s a lot on social media and the press at the moment regarding the concept of the autism ‘spectrum’.
I’m going to dip my toe in here, hopefully not at my peril!
I became an autism and ADHD parent in my twenties, although didn’t know until my early thirties; that was a long time ago now, I’m 60! It was very different times. We didn’t have social media, we barely had the internet, it had just started getting going and I didn’t at first know any other parents with autistic children. We definitely didn’t know the term neurodivergent.
I was a teacher in a mainstream comprehensive and was loosely aware that I taught perhaps 3 or maybe 4 children who I later realised were likely autistic. Two years later, I was working in a school for pupils with what was known at the time as ‘Asperger’s syndrome’. A whole school full! Since then, Autism has been a big feature of my life and I have met, known and taught hundreds of autistic children and adults.
So of course in that time I have questioned what is going on with the label.
At first we had Asperger Syndrome and the rather utilitarian and clumsy term ‘high functioning Autism’. We were happy. But were we?
Well no, it didn’t really work well.
My child and most the children I taught in that first special school were what was termed ‘complex’. However they were also verbal, were the full range of ability that you might see in a mainstream school, some indeed are now university professors. What made them complex was the impact of Autism and especially co-occurring conditions such as mental health, PDA, attention and concentration, sensory and social communication differences. One definition or synonym for complex is ‘intricate’. The young people had an intricate mix of needs.
At the time, I offered an article to the National Autism Society magazine on the topic because I wanted to get across that having a severe learning difficulty and/or being non-verbal was not the only marker of complexity in Autism.
Some people I worked with in the school, didn’t even know that Asperger and Autism were the same thing, one of my colleagues commented that they thought one child in my class was Autistic as well as Asperger. Clearly they could see it was one and the same really. But I digress!
Having since worked in schools where there were children with all learning or verbal abilities regardless of an Autism diagnosis, I have seen that the term ‘spectrum’ seems to just about sum it up really.
But what about the idea of ‘profound autism’ as some are now suggesting might be a way to differentiate?
It might be a useful term in order to understand where an autistic person is disabled to the extent that they cannot do anything in life independently and it is clear why this differentiation is needed, as like all labels, it can immediately give us information with very few words. But where would the line for ‘profound’ end?
It’s clear though that the word Autism alone can only tell us so much.
To my mind, the problem lies in the fact that the gap between a potential ‘profound’ label and those being able to lead entirely independent lives including holding down a job, having a family, maintaining a home etc is filled with a vast array (I ‘m not good with numbers but lets say billions) of different Autistic profiles.
I have experience of those who are non-verbal and need support and supervision constantly, non-verbal but with strong receptive language ability, verbal with severe learning difficulties who can carry out many daily living tasks independently even if they might need support and may not live independently. I know many with qualifications up to degree level, still reliant on daily support with form filling, budgeting, communicating and to keep a roof over their head. I know those who are impacted by agoraphobia and burnout or by debilitating anxiety that means they can barely function in daily life but can read, write and manage their own money well. Which of these deserve the Autism label? Which are complex? Who are the ones who are profound?
For me the question is whether it is Autism itself that is ‘profound’ or whether it is an Autistic individual’s experience of Autism and the impact of their individual profile of co-occurring needs, that makes a condition ‘profound’.
The debate has been ongoing for as long as I can recall but we are living in very different times to when I first became a parent and teacher. We know more now, we understand far better. Autistic people who could share their experiences were celebrated in the early days of my experiences, because some could explain the Autistic experience for those that could not.
I don’t have the answers. I’m not a researcher and I’m not a public speaker on the topic because I’m not sure I believe in ‘experts either! I’m just a parent, teacher, advocate and neurodivergent person. I have come to accept over the years that Autistic people vary widely and certainly in their learning, independence, emotional health, communication skills and academic ability. Most, if not all people I know, who are Autistic, have more than one label and Autism as a label does not tell us the full story about anyone.
I am a former Deputy Head of a special school, with lived experience of neurodivergence. I taught for 25 years in both mainstream and special schools and currently work as an independent Special Educational Needs Consultant and Specialist SPLD Assessor.
