AS from an AS Perspective

Dean Beadle is a nineteen-year-old young adult with Asperger’s Syndrome. He tours the UK giving speeches at conferences and events and writes a regular column for The Autism File.

I meet hundreds of people every month at conferences and events: teachers, psychologists, parents, teaching assistants and therapists. They may come from varying occupational backgrounds, but they all have one thing in common: a fantastic approach to autism, and a passionate desire to develop a better understanding of the condition.  I therefore thought that this was indicative of an improvement in society’s attitude towards autism in general. I was delighted to think that this was a sign of conditions changing for people with autism and that, as a result of this developed understanding, – those in charge within local authorities were making the right choices for their individuals with the condition. I was quickly proven wrong.

There is still a huge amount of ignorance in the UK regarding autism and Asperger’s Syndrome, as many people seem to believe that people stop being autistic at eighteen. At least this is how it seems, because services are mostly withdrawn at this difficult transitional age.

The services available to adults with Asperger’s Syndrome and autism are lacking, to say the least. We are blessed that there are so many inspirational and life-changing services in the UK for children and young people with autism - I get to see them firsthand. I’m not saying that these services are perfect, but they are in comparison to adult service provisions.

It saddens me to think that all of those incredible services are effectively useless if not developed further and continued.  Before eighteen, all of those parents, TAs, teachers and therapists are improving children’s lives – helping them to develop those much needed social and emotional skills, which make their world a happier place. This can all come undone as we pull the rug of support out from under their feet at eighteen. We are helping them half way up the mountain of life, if you will, and then leaving them there. This position is impossible for them: they only made it that far because they were aided and encouraged and now they are expected to continue alone. This can be incredibly daunting – especially when you consider that there is potentially a long way to fall if the young adult makes a mistake and there is no one there to catch them anymore.

Now this all sounds quite negative, but it doesn’t have to be. I have witnessed a few exceptional adult services. I have heard of incredible services in Leicester that help autistic people to find and maintain jobs. This is a service that is much needed and has reaped some impressive results. Moreover, the “Options Group,” which provides services across the Midlands and the North of England, provide a life-long support network. They have transitional services that aid young people in making life decisions. They also provide a life-long supported living service for those who require it. Within this service, autistic adults are supported in coping with the outside world, and are given the support and reassurance that’s needed to help them to prosper. I have been lucky to see the work of the Options Group and passionately believe that their work should serve as a global example.  Other councils and organizations should follow their lead and provide similar services to adults in their areas.

It concerns me that there are millions of adults across the UK, and indeed the world, who are deemed intelligent and, therefore, they are assumed, quite incorrectly, to be coping with life well. I empathize with these autistic adults, as I am one of them.  I was an A-grade student, and am now building a career and running my own life. However, this does not mean that I have no issues, far from it! My condition still impacts massively on my day-to-day life. I am currently finding it difficult to understand my emotions: differentiating between fancying, fondness and love is a bit of a grey area for me; I’m constantly questioning my emotions and I sometimes struggle to understand how I feel. This leads to a lot of uncertainty, stress and confusion. I am lucky that I have a strong support network and have people whom I can share these concerns with: people who can offer me reassurance and help me to find clarity in times of confusion.

I want other adults with AS or autism to have that too. Education has come a long way in the UK and our autistic children are mostly fortunate enough to have access to the support and guidance that they need. The next step is extending this support to adults. This is why I am delighted that the National Autistic Society has launched the “I Exist” Campaign. I believe the campaign totally sums up how so many adults with autism in the UK feel. We are asking to be acknowledged and given a safety net – an individualized foundation of reassurance and support for us to build our lives upon. We want our needs (however varying they might be) to be met. This isn’t too much to ask.

It remains to be seen what the long-term outcomes of the NAS Campaign will be, but I am confident that we will see a great change and improvement in adult services as a result of it. However, this change will only occur if people like us, who either have autism and Asperger’s or live and work with people who do, stand up and make ourselves heard. My mantra in life is: “If you aren’t heard, shout louder,” and this is exactly what we have to do.  We have needs that must be met. We are important in the society that we live in. We exist.

Filed in: Living with Autism

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