A rhetorical question? We all think we know what autism is.
It is whatever our personal take on it is. So, for those of us who have children with autism, it’s how they present, their abilities and disabilities, those parts of their personalities affected by their autism.
Is it possible to separate the two things? The person you are from your autism?
Autism used to be called Autistic Spectrum Disorder (ASD) but is now also known as Autistic Spectrum Condition (ASC).
For me, one of the key words is spectrum. Autism used to be easier to define when classic autism and Asperger’s were separate categories. Now, the word autism is used almost as a blanket term to cover everyone, no matter how able or dis abled. Do you see the spectrum as a circular spectrum? a pie chart or a linear line? However you visualise it, the spectrum is enormous and wide ranging.
‘When you have met one person with autism, you have met one person with autism’.
Every human is unique, every person with autism is unique. There is no convenient term or explanation to label everyone with. Yet, the single word, autism is expected to do so.
In the past week or so, we have had the contrasts of a powerful documentary covering the high functioning end of the spectrum where adults live independently , have full language skills and average or above average intelligence. They want their ‘type’ of autism to be understood better, to raise awareness of a condition which many were unaware that they had until perhaps adulthood. A label which now helps to make sense of how they feel at times.
At the other end of the spectrum, we have a dreadful story of a mother in the media dragging a child through a shopping centre due to his extreme behaviour as part of his condition of severe autism.
But, it’s all the same label.
No wonder there is confusion about what autism means. It is a spectrum of extremes.
There are further definitions within the scale. High functioning versus low functioning. What does that even mean? The ability to speak or not to speak? But, what about non verbal abilities?
Can you move up the scales, like in the class system? Yes, and no.
My boys at diagnosis were deemed to be at the lower end of the autistic spectrum. Non verbal, severely behavioural, destined for residential care.
Where are they now? Somewhere in the middle. They do not have and will never be Asperger’s by any definition. The only label we can try to apply to them is high functioning autism but that label now also means Asperger’s. How confusing is that?
Due to 16 years of a fantastic system, ABA (Applied Behaviour Analysis), our boys are now verbal, able to mix almost undetected in public. They have ambitions for their futures and so do we. The only reason this therapy is not offered to all is cost. Financial cost. There is so much evidence to show how much it helps children at the severe end of the spectrum, we know it works.
And yet, people criticise us mothers for setting up ABA programmes. For ‘allowing’ our children to learn to communicate, verbally in our boys’ cases. For giving our children the ability to make choices in life, the ability to communicate their basic needs like hunger or pain. For helping our children to access therapy which has taken them from being non verbal with little expectations to a place where they are integrated into everyday life and are
HAPPY. Yes, that is a truly important word. We found a therapy to make our children happy about themselves and their lives.