I just want my autism to be respected.
Every five years or so I have the unenviable task of needing to re-confirm my autism to professionals in various official capacities. As an autistic adult who manages to live a fairly independent life with a responsible job and I would love for these conversations to include more questions about me - what are my hopes, what do I want to do with my life, how could my life be improved?
I understand that my situation needs to be reviewed and I know that the professionals have a job to do but the way these appointments are conducted leaves me feeling that I am less of a human being and that I need to justify my autism diagnosis. It feels as if none of the professionals I meet have the time to really understand me, what being autistic means for me and what impact it has on my life.
For instance, these appointments are usually held at a hospital which is not near to where I live, meaning a train journey and taxi ride. My anxiety is already extremely high before I even step into the hospital and I am barely able to keep calm in unfamiliar surroundings. This situation doesn’t get better when, as usually happens, the appointment is delayed, and every minute waiting can seem like a lifetime. Not only am I getting anxious for myself but for the other people who are likely to be delayed because of my appointment.
On one particular visit, when I did eventually get called in to see the consultant, she spent the first ten minutes reading my notes whilst I just sat there. Obviously, she hadn’t had the time to prepare which is not surprising given how stretched resources are, but this made me feel extremely uncomfortable. It was obvious that she wasn’t going to have the time to understand what my autism meant to me or, get to know my individual circumstances
As part of the process, there are questions I need to answer – these are the same questions every time, none of which are really relevant to how I manage my autism and what I need for my life to be better. These include: • How long have you had autism and dyspraxia? • When were you diagnosed with these? • Can you remember three items for us – pen, desk, and apple? • How good are you with money, public transport, daily living tasks, medication? • Can I bathe myself? • Can I cook a basic meal?
These questions all make me feel less than I am, they make me feel misunderstood and that all that I have achieved in my life is undervalued and certainly not acknowledged. I feel that I am being talked down to, like a naughty child but I’m not a naughty child I’m an adult who just happens to be autistic.
Learn, Understand, Accept
If, during these meetings, I felt respected as a human being who just happens to be autistic, then there would be no need for me to prove to them who I am and what my autism means to my daily life. A simple letter asking me to confirm certain information would suffice.
Autism is a lifelong condition, it does not just go away but what any autistic person will tell you is that we learn to adjust, we develop systems that help us deal with life. I feel that if these professionals spent just one day here at Autism Unlimited’s Portfield School they would truly know about autism and understand that all any autistic person wants and needs is respect, acknowledgement of their diagnosis and recognition of them as an individual human being. That’s all I want.