Decades ago, I found myself supporting a young woman with autism. I had done my reading of the autism texts of the time, and was singularly surprised when nothing I had read matched up to the person I was sitting next to. There was no flapping, she had no interest in my earrings or buttons; she wasn’t even lining anything up.
The concept that all people with autism are disordered, impaired, or somehow ‘lesser’ is one that needs to be challenged. Having worked closely with people with autism for many years, I have had the pleasure of meeting many hugely intelligent, insightful, kind, caring, loyal, skilled autistic individuals, including two of my best Doctoral students who both graduated successfully and are now prominent in their respective fields.
Some of the strongest marriages I have encountered are between people with autism, and I have also met multi-millionaire entrepreneurs who have been identified as autistic.
So the question remains, why is it that autism continues to be seen as a disorder, with terms such as ‘impaired functioning’ still so rife within medical literature? Why is it that one needs to present as a ‘problem’ before being in a position to be identified as autistic?
Even the term ‘diagnosis’ brings its own associations with ‘illness’ or ‘disease’. This gives out the wrong message to all involved – parents, individuals, and the public. For years I have been suggesting that the term ‘identification’ is a more appropriate one, decreasing the pejorative language so often heard in reference to autism.
Without doubt being autistic in a world populated in the main by people who are not can cause huge issues for the individual and their family. But this is not the same as suggesting that the problems are caused by being autistic. The very fact that there are plenty of autistic individuals who are hugely successful demonstrates that being autistic does not preclude anything at all.
The sad fact is that there are still pockets of thought that deny this; comments such as ‘she will never be able to have children’, ‘he will never go to university’ and the like are still way too prevalent. Parents of newly identified children are still sometimes told what the future will hold, despite the fact that no one has a crystal ball. Perhaps many of the problems stem from being in a poorly understood minority group, rather than directly from being autistic.
Nonetheless, things are certainly changing for the better – however slowly. The National Autistic Society (NAS), for example, actively promotes employment for people with autism – and, at last, higher education is beginning to recognise the value of having autistic students. The Equality and Human Rights Commission is working to ensure a level playing field in the workplace, although there is some way to go.
The Autism Centre at Sheffield Hallam University is working to further these initial advances; to continue to promote a more accepting view of autism and to encourage society to recognise the potential of autistic individuals.
One of the courses we run in collaboration with the NAS has welcomed a plethora of autistic speakers, guest lecturers and autistic students each year since its launch. The insight and expertise from such individuals is invaluable, providing richness and value to the course. Indeed, it would be foolish not to acknowledge that without the input from autistic individuals on the course, students and lecturers alike, it would be highly unlikely that the qualification would be such a success.
So have perceptions changed over the years? Well, for absolute certain I can say that mine have. I no longer assume that all publications are ‘correct’, and recognise that all autistic people are individuals. I have learnt to challenge the notion of impairment and disorder, while still recognising the huge challenges faced by individuals and families.
I have begun to recognise the damage that can be done by ignorance and misinformation. I have learnt that changing perceptions through a better understanding of autism can significantly improve lives, and the best way to develop an understanding of autism is to listen to those who are autistic, their families and friends.
In terms of general perception, certainly society is moving slowly in the right direction, with more and more autistic people self-advocating and promoting their strengths. However, there is still an awful long way to go.
• Luke Beardon is a senior lecturer in autism at Sheffield Hallam University.