Congratulations, Clem Bastow. Finally, at the age of 36, you received a diagnosis of autism spectrum disorder (The Age, 12/12). You had spent your life wondering why you were the way you were and felt the way you did and, no doubt, were filled with frustrations and other negative feelings.
What I find concerning about autism diagnosis in cases such as yours – and which are currently being talked about so much – is that people in general seem to believe most autistic people are high functioning and can live productive lives.
I do not want to diminish or dispute the problems that you have faced. However, you are very lucky you are not among the still very large percentage of autistic people who are very low functioning: an IQ below average, without speech or other effective way of communicating and limited receptive language. They are unable to independently remove themselves from stressful situations because they cannot communicate to others how they feel when they are faced with sensory overloads, etc. These are people who cannot dress themselves or have other "independence skills" which other people take for granted.
Their frustrations often take the shape of violent behaviour towards other people as well as themselves – to the point that, if they are in public, security officers and the police may be called. Sometimes this is because a member of the public, out of ignorance and fear, has decided the police need to attend, even when they do not. Sadly, Clem, you and others with high-functioning autism have been undiagnosed for many years.
Now it seems that we have forgotten the low-functioning ones. Can you imagine not being able to express your fears and thoughts? I have met many low-functioning autistic people and have two very low-functioning, autistic sons (one your age). Sometimes I cannot bear to think of their suffering.
And can I mention how stressful and frustrating it can be for a carer or parent to go out in public, not knowing from one minute to the next what might happen – meltdowns, escapes, running into heavy traffic, drinking, eating poisonous products, etc. All it takes is one second for things to go horribly wrong. Perhaps we need diagnostic terms which differentiate between high and low-functioning autism so that the general public has a better understanding of the word autism.
Elisabeth Appelgren-McIntyre, Mount Martha