Describing autism

Following on, in a way, from my last post: I was interested to read some research on the language that is used to describe autism. The research was carried out by the National Autistic Society, the Royal College of GPs, and UCL's Institute of Education. If you are interested, you can read the full report here - it's nineteen pages of academic writing though, so you may need tea! I did. A shorter summary is on the NAS website here.

My personal opinions on and feelings about the findings and the research itself are jumbled and a bit raw, but I'll try to get some of it out here.

Having done such a big study (3470 respondents), it seems a shame not to have sought a more balanced sample. For example, of the parents questioned, 188 said they were male, but 1999 said they were female. That's a huge voice given in this instance to mothers, but not to fathers. Of the autistic people (as most of them preferred to be called, rather than "people with autism"), 450 were white, 25 were another ethnicity, and 27 didn't want to say. In both of these instances, I wonder how different the results would have been if the samples had been more representative of the population.

There were 2207 parents questioned, but siblings (I know, I know, I'm being very self-centred here!) were mixed up with the 380 "extended family members and friends". Forgive my egocentric bias, but really, I do think the relationship that a sibling has with an autistic person is different from relationships that aunts, uncles, cousins and friends have with them. For example, since childhood, I have understood that my sister will always need someone to care for her, and I have been aware that if anything happens to our parents, I will care for her. I will be the one who struggles (and it will be a hell of struggle) to explain to her why our parents aren't around - which will be difficult, if not impossible, given her limited vocabulary and (what I understand to be) her difficulty understanding concepts (such as illness and death, and even family). I don't have the distance of extended family members, who see my sister once a year, if that. I cannot detach my mind from her or her autism/learning disability.

Back to the research, and "person-first" phrases such as "person with autism" were preferred by professionals working in the field, while "identity-first" phrases such as "autistic person" were preferred by the autistic people who took part in the research. There was much debate about whether autism was part of a person, and whether adding a separate description makes it sound as though an autistic person has a choice about being autistic or not. I had not considered this point of view, and I can see the disparity. Personally, I prefer to say "my sister with autism" because she is my sister first and foremost, and someone with autism second. In her case, she wasn't diagnosed with brain-injury until she was a toddler, and then wasn't diagnosed with autism until she was in her late teens - so I certainly don't see her person and her autism as one and the same. It's difficult, because she doesn't have the communication skills to tell me what her preference would be, or even how she feels about her autism. All I have to go on is her behaviour - the times when she laughs and smiles, the times she strokes my hair, the times when she makes happy-sounding noises, the times when she makes anxious or angry-sounding noises, the times she pushes me away, the times she spits, bites or screams.

Finally, the huge dislike of the term "low-functioning autism" has led the NAS to drop the term - but it hasn't replaced it. I looked on the website just now and there is a section on the difference between high-functioning autism and Asperger's, but nothing on low-functioning (or an equivalent/alternative term). This itself feels rather alienating. In the research, there was also dislike of the term "high-functioning", but not to the same extent. Again, I can understand the dislike of the terms - they are simplistic, and many people find the term "low-functioning" derogatory. But my reasons for using the term "low-functioning" and occasionally the term "severe" are certainly not to cause offense.

I use these terms because so often, when I simply tell people that my sister is "autistic", the response is one of the following:

• "Cool! Is she really good at drawing?"
• "Wow! Is she good at maths?"
• "Oh yeah, I'm a bit autistic too," before explaining that they like to line their shoes up neatly/tidy up the kitchen before they go to bed/do anything that a neat and tidy person would do.

I use these terms because professionals will churn out the word "autistic" when it suits them, but then they will forget how serious my sister's learning disability is and how she is unable to ask for her needs...but that she still has needs.

Basically, I love my sister to pieces, I feel awful that she can't express herself the way I can, and I want people to make an effort with her - professionals and people she meets socially. The debate about language is an important one. It's the reason that terms that were used when my sister was young (the one beginning with "r" that I don't want to repeat, and "mentally handicapped") aren't used now. But as we find some words are not so helpful to everyone, we need to find new words that are more helpful to more people. If autism is a spectrum, there are a lot of people whose voices and needs ought to be listened to in future discussions about the language we use.