There is continued debate about whether the autism spectrum should be seen as a form of difference or of disability. Most people we spoke to talked about feeling different. For some, this was a positive feeling while others described feeling isolated and wanting to fit in.
Martin likes not being ‘an ordinary Joe.
John L prefers to think about what is good about being human rather than what is good about being autistic.
Paul I sees himself as Paul first; a human like everyone else.
‘I think we are always trying to fit in because I always feel that I am on the outside anyway. And it’s really hard work. And you know that you are different. You know you do things differently and you know that you do, do some odd things. But you are aware of that, but everybody is different. Everybody has got their right to be different but just that most people don’t understand what it is like to be the Martian in the playground if you like, or the odd one out.’
‘Loneliness, I think, sort of becomes the default setting’
Feeling different was a lonely experience for many people we talked with particularly because of difficulties in socialising and making friends. Paul, for example, said that he didn’t feel involved in social situations as a child, and didn’t feel at ease to get involved in activities.
Mark always felt different to everyone else.
Oliver found feeling different was like trying to ‘shout without having a mouth.
One woman said that the hardest thing she had to deal with was; ‘Trying to get on with everyone, sort of trying to act, sort of act normal, and people thinking that you are normal but thinking you are strange because they don’t know what is wrong with you.’ Harriet said ‘I have known ever since I have memories that I was not like other people’ while Mark commented; ‘I never sort of really felt as though I belonged and I think that was highlighted, particularly in my family because, you know, I was so very different to my parents and my sister was so very similar to my parents. It sort of highlighted and made me feel , basically , like a freak.’
Luke never understood why children played things like cops and robbers.
Duncan preferred to be on his own when he was younger and always preferred structured games like…
When she was first at school, Catherine had no friends apart from her cousin.
Richard had a solitary childhood.
Tim and Julie discuss the ways in which Tim was different when he was at school.
Several people were baffled by everyday unwritten social rules such as asking someone ‘How are you?’ because the expected answer was usually ‘fine’. These social niceties seemed to them unnecessary, meaningless or banal. They felt a distance between themselves and other people. A few people felt as if they were behind a pane of glass looking in on others.
Sam recalls an ’emotional distance’ between himself and other children.
John walks around and feels that ‘everyone has ‘got it’ apart from me.
Steven thinks that there are so many unwritten rules to life but nobody is there to tell you what…
Daniel has learnt that the most important thing is to accept yourself as who you are.
While Richard can give a dictionary definition of the word enthusiasm, he says that he has never…
Laurie describes feeling like a ‘really tiny person in a huge big world.
‘Life would be so more interesting with more autistic people’
Several people said that they didn’t want to feel different while a few found their difference positive or felt ’50-50′ about it.
Oliver and Susie reflect on what life would be more like if more people were autistic.
Christopher is unhappy he is autistic, but also glad that he is.
‘Putting on an act became mentally exhausting’
Feeling different was tiring for some people. They talked about how draining it was to try to fit in all the time. As one man said ‘I think we are always trying to fit in because I always feel I am on the outside and it is really hard work’. Daniel likened the experience of daily life to the beginning of the film Saving Private Ryan; ‘every single thing takes twice as much concentration and twice as much energy’. A few people said that once they had the diagnosis they could stop trying so hard to fit in and this was quite a relief. Others tried to find strategies to fit in better (see ‘Strategies’).
‘I was odd, and I was treated as a bit odd’
A few people talked about the ways in which other people perceived them as different.
Feeling different was not helped by the fact that many people felt that non-autistic or neurotypical people found it hard to understand what it was like to be on the autism spectrum. This added to a sense of isolation for some people.