No mattter where you (or I) are on the spectrum, there are inevitably issues that come up relating to other people’s perceptions of what we are or are not capable to doing. When I first got my aspergers diagnosis I was quite uncomfortable using the word autistic to decribe myself as I had internalised the rampant discrimination against autistics and could not accept that word as one if my identifiers. However, over time I have become much more comfortable and will often use autistic interchangeably with aspergers.
Interestingly there is a direct correlation between my comfort with this and an increase in many people’s misconceptions around me, my life, my capabilities and my values and attitudes. As a self-advocate and an autism advocate I feel the need to challenge these negative assumptions and stereotypes, but as an employee I feel constrained by the lack of job security. In talking with other professionals who happen to be on the spectrum (or autistic spectrum adults who happen to be professionals of various types) it seems that the worst discrimination, in terms of how frustrating it is for us, is from supervisors and.or managers that focus on the diagnostic label and ignore the clear talents behind it (ie the skills/knowledge that got us all our jobs in the first place).
A very talented and efficient autistic professional I know has just moved jobs to get away from this kind of manager. Interestingly they obtained a new job almost instantly. Another gifted autistic professional has left the field in which they worked with great aclaim for many years as a new set of colleagues were patronising and discriminatory in their dealings with this person. The list goes on and on and it makes me angry.
I am a committee member for the autistic self advocacy network of Australia and New Zealand (or ASAN Oceania as it is sometimes known). Part of what we are working towards is the coming into reality in this part of the world of the common disability slogan ‘nothing about us without us’. To this end we aim to be involved in the design of research, the ethics reviews of research, as well as the data analysis and interpretation where the research is ‘about autism’. I have designed a small piece of research for and by adults on the autism spectrum. In order to obtain ethics approval I needed to use a more complex procedure because ‘people on the autism spectrum are all vulnerable’. That is me the ethics committee is talking about. I, one of the lecturers/tutors/researchers at their institution – deemed vulnerable. Now I am not saying that no autistics are vulnerable but it was just a shock to be labelled in this way.
A pet peeve (annoying thing) of mine is the assumption by some people that “we are all a little bit on the spectrum”. No you are not, you have no idea what it is like to be on the autism spectrum unless you are on it. Just like you are either pregnant or not, you are either on the spectrum or you are not. I have come to realise that when people say this they generally mean one of two things; either – “oh dear I don’t know what to say, you seemed so normal until you just said you had aspergers/autism” or “well clearly you are not rainman or someone that flaps and screams, and nor am I so we must be similar”. I however have friends who flap and I know young autistics that can express their frustration by screaming. I have things in common with these people, a difference in the way we experience the world both the physical and the socio-emotional aspects of life. I am not ashamed or embarrassed by people who are clearly ‘different’ or obviously atypical. Some of them are part of the autism community and some are not.
I would argue that just as you cannot know the potential of a young child on the spectrum, you cannot know the talents and difficulties of an adult on the spectrum without getting to really know them and accept them for who they are. Only then will there be trust and a willingness to be open. Many autistic adults have had one negative experience too many to jsut be open and trusting with new people.
For the record my first degree was a joint honours degree in English literature and Education and one of my inspirations is an autistic gay firefighter from regional Australia who not only has great IT skills, but is amazingly fit and a valuable addition to the firefighting competition team.