Hi everyone, I’d like to introduce myself as the new president of TAAP. I am extremely honored to be asked and accepted as president. I am on the autism spectrum, having been diagnosed with autism at 3, 7, and again more recently at 33. I am high functioning so most people would not know what is going on inside and I must admit I do like it that way, though on the other hand I do find myself misunderstood a lot because of what is ultimately a hidden disability or shall we say difference. I was sent to a special school when I was first diagnosed but was brought into the regular school system by my mother who recognized my abilities while making a monumental effort to make sure I got the right help for the inevitable difficulties.
I believe it was due to a mixture of blessings that I am so high functioning today. The most important I feel was this early help and understanding from my mom that accepted me as I was but also recognized in that acceptance that I needed help. Another blessing was that I did receive for the most part very good help from school special Ed programs, and various other groups such as Integra. I also was blessed to be on the speaking/high functioning side of the spectrum. I believe that the most important element here was the acceptance and help. Without this I know I would not be where I am today. Things I struggle with now I can feel how without the help and understanding, they would have shut me down into a “typical” autistic pattern.
I have now found myself in the unique position to be able to be a small window into the world of autism. I continue to experience many of the internal autistic patterns such as only being able to experience one sense at a time and due to that having difficulty looking into peoples eyes when I speak and often speaking too quietly, though I feel I am shouting etc. Though to some it may seem I am “cured” I don’t believe in a cure per se. In my experience, all the “cures”, many of which I have tried, help by taking stress off the system and making it easier to cope and function but the underlying issues are still there and I believe it is dangerous and potentially psychologically damaging to believe this is a disease with a cure. It makes me and many other autistic people feel wrong about who they are and when the cures don’t work, it can feel like you’re a failure and cursed.
I often find myself having to ask myself, what if I actually have a brain that functions differently and there is nothing I can do to change that to fix it? What happens is I begin to accept it and magic happens I begin to focus on the abilities I have and not worry so much about the things I can’t do and life becomes happier, easier and I find those things I can’t do so well are not so important to me. What if I love sitting by myself and staring for hours at the water and I don’t care for team sports TV and gossip. Is that so wrong or weird. To some “normal” people it is and as a child I was often made wrong for it, by my dad, kids at school and even some teachers. It was getting specific help from special ed teachers that served as an interface with the teachers that didn’t understand how I could be so obviously intelligent and get high marks but not be able to understand what was going on in the classroom. They would actually accuse me of disrupting the class for asking too many questions. I still get an attitude from people, generally stating, how can you be so talented able and intelligent and have such a hard time with the world, get over it and just do it. I have tried this approach and it doesn’t work for me, I wish it could.
Because of this I feel passionate about TAAP’s mandate of encouraging acceptance along with help, sensitive to the individual that is being helped. This is key, to be sensitive to the individual that is being helped rather than trying to fix them or fit them into a mold we feel is best for them. I have gone through this first hand and I know how damaging it has been to my psyche and life to be helped by trying to make me “normal” the shame and guilt and fear I hold in my body from this and the self hatred it has engendered is actually more disruptive to my life than the autism itself. I am still learning to accept myself as I am and realize that I am a valid and worthwhile human being AND sometimes I need help because of a difference in the way my brain works, AND sometimes I have special things to offer because of the difference in the way my brain works.
TAAP is a great voice for those that are unable to speak and for those to young to speak their needs. There is such a difficulty already in communication in the autism spectrum, it can be hard to understand that what one feels is valid because from that isolated place inside you are observing and often trying to get it and fit in and sometimes it’s hard to realize that everyone isn’t struggling with the basic things as you are and so can blame oneself and just not say anything, assuming it will be somehow wrong. At least that is what occurs for me. To feel there is a voice that not only seeks to understand autism but also wants autistic people on the board and as president is such a blessing. Giving a unique voice that hopefully is as true to autistic people in general as possible. Now, autistic people are all different from each other too so we all have unique needs and voices. So just because I am considered on the autistic spectrum and others on the board are also, doesn’t mean we speak for all autistic peoples needs. Hopefully we are just more receptive to the unique package that AS is. I personally don’t identify myself as autistic in my everyday life. I just do what I need to to cope. Sometimes it’s awkward when people notice certain things and I tell them I am on the autism spectrum. I still feel uncomfortable with the feeling of not being able to just get these things, it would seem so simple. But it isn’t. The amazing thing about this journey though, is that as I am learning to accept myself as I am at the same time also helping others accept people who may be in a similar place as me so as they won’t grow up feeling so wrong inside.
This is ultimately a human rights issue of accepting each individual as they are and providing help where needed. I have no interest in politics and I know there have been issues in the past but I have steered clear of taking any sides. I just want to be a voice for a very personal experience of autism, my own, with all itís special joys and difficulties, and help get other voices and perspectives heard. I believe along with the rest of TAAP that our personal perspective from within autism is an essential component to truly finding appropriate help and understanding to those on the autism spectrum in finding their place in this society.
I would also like to be an example to parents that a diagnosis of autism is not necessarily a terrible thing. Someone diagnosed with autism can grow up to take part in this world not despite there autism but with the unique talents it also provides. This is not a guarantee, we are all unique, but in my case and in so many others I meet it is the case. My mother was told when she took me out of the special school I was in to bring me into the regular school system that I would never be able to function as a normal adult in society that though I was intelligent and would be accepted in the school system I would have difficulty functioning in that environment. Well in some ways they were right, I’m not a normal adult, and I have had difficulties in school and throughout life due to my autism but we all have difficulties in our own unique way and I have found talents and a place for them. Autism is not a death sentence but a unique opportunity with so many rewards, joys, and challenges. May we all learn to Love and accept each other and ourselves as we are, then grow and blossom from that foundation.