A few years ago my lovely husband was diagnosed with Asperger Syndrome – a form of autism. In this honest and open blog post, he discusses the pros and cons of being diagnosed later in life.
Last year I did a level 2 course about autism. I found it interesting, not least because of the discussions it sparked between me and my tutor. One of these was about “correct” terminology. In several of my answers, I referred to autistic people and was pulled up on this and told I should always refer to “people with autism” and never “autistic people”.
When I mentioned this to my husband, who is autistic himself, he was somewhat less than impressed! When he was diagnosed with Asperger Syndrome, and after he’d had time to get his head round it, we had a conversation about the language he wanted to use. He’s always been very clear that he is autistic, he doesn’t have autism. He says being autistic is the same as being intelligent and being friendly – it’s all part of his personality, whereas he feels having autism is like having a cold or having measles and makes it sound like an illness and also like something that’s just temporary.
His views on “autistic person” vs “person with autism” are similar. His opinion is that “with autism” makes it sound like something that’s completely separate from him rather than something that contributes to making him who he is. He says people would always talk about a generous person and a friendly person, but never “a person with generosity” or “a person with friendliness”, so by the same token he says he is an autistic person and not a person with autism.
My tutor took these comments on board and passed them on to the people who had written the course, but the response was a very disappointing, “we have no plans to change” – even though the National Autistic Society uses “autistic people” because this is what the majority of the people they represent prefer. The course advocates a person-centred approach throughout but it seems that this does not stretch to asking the autistic community how they prefer to refer to themselves!
As a nation, we are a paradox. On the one hand we are obsessed with not offending people and our language is becoming ever more restricted so as not to offend people. On the other hand, we don’t seem to care enough to ask the people concerned how they feel about it!
Another example of this is the use of “hearing impaired” and “visually impaired”.
Hearing impaired is often seen as the correct, PC, non-offensive way to refer to the Deaf community – despite the fact that most of them find the term hearing impaired offensive. To them, the term “impaired” suggests faulty or substandard – and how can that not that not be offensive?
I asked a friend of mine who is blind what she thought of the term “visually impaired”. She said she didn’t find it offensive, but felt that if people were going to use it, it ought to be applied to everyone who doesn’t have perfect vision – including all those of us who wear glasses or contact lenses, or who screw our eyes up when trying to focus on something close up!
I think above all the most important thing to remember is that everyone is different. There is no one size fits all way to refer to people that everyone will be happy with. We should stop trying to be so politically correct if that means making decisions on behalf of another person about what may or may not offend them without finding out what they really think. If you only take one message away from reading this post I’d like it to be this: just ask! Ask people what they want. Ask people how they prefer to refer to themselves. Ask each individual what he, or she, or they find offensive and make sure that you use a term that the particular individual you are talking to finds acceptable.
I recently completed the FutureLearn Good Practice in Autism Education course, and this is a website they recommended for as a place to find and share examples of good practice from all over Europe:
I haven’t had chance to check it out properly yet, but it looks as though it could be useful.
“All behaviour happens for a reason.” I came across this introduction to Positive Behaviour Support recently as part of a course on autism that I’m doing with FutureLearn. I found it interesting, so I thought I’d share it.
A little while ago I signed up to a course called Understanding Autism, Aspergers’ and ADHD. The course was interesting, both because I learnt things I didn’t already know, and because it made me challenge my own beliefs. One of the short written questions obliged us to explain whether we thought that autism and ADHD both belong on the same spectrum. It took a lot of thinking about, but this is the answer I came up with.
My first reaction is that these conditions are completely separate, although they share some characteristics – even after completing this module and discovering more about the overlap of symptoms between autism and ADHD
On reflection, I’m not so sure. It is often said that everybody fits onto the autistic spectrum to some extent and as some of these characteristics (eg the need for familiarity, and an aversion to change) would probably have been desirable qualities for keeping safe in the earliest civilizations, it makes sense that both autistic and supposedly neuro-typical people would share them.
I would have said it was not the same case for ADHD, but the anecdote in this course about the child in school who stopped listening to the teacher and went to look out the window when he heard a car has really made me think. How many of us have felt compelled, on hearing rain, to leave whatever we should be doing to stare out of the window, even though we know what rain looks like. Again, this ability to shift attention from the current task to investigate something that may be dangerous, would have been desirable for early man’s survival, so it makes sense for all of us to share it.
After consideration, I think that ADHD, autism and Aspergers do all fall on the same spectrum. I think that we all share combinations of the characteristics of autism and ADHD, it’s just that those of us who are seen as NT possess combinations that do not impact negatively on our lives.
What do you think?