Springingtiger's Blog


A Love Affair with Autism? Part 2
October 26, 2010, 19:42
Filed under: asperger's syndrome, autism | Tags: , , , , , ,

In my last blog I was wondering why a Neurotypical (NT) or “normal” person would commit themselves to bettering the lives of people with autism and – needless to say – reaching no real conclusion. There are I think broadly four groups of people involved with autism; those who have autism, those whose families include someone with autism, professionals and non-connected people who encounter autism and develop a passion for the the whole field.

I have autism – Asperger’s Syndrome – and my interest in autism arose with my diagnosis and has become a consuming hobby. I am fortunate in that my autism is “high functioning” and I am intelligent but many of us are not so lucky. Like many people with high functioning autism I feel a responsibility to people with autism as a whole, to try and make the world a better place for all of us. I may not have a qualification in psychology, medicine or social work but I share many of the experiences of others on the spectrum, and that experience qualifies me to speak from my experience so that people may understand the experience of those who can’t or won’t speak.

The next obvious group involved with autism are the families – particularly the parents and siblings – of people with autism. These people did not ask to have their lives affected by autism but they have been presented with challenges and need support. We with autism probably have less choice in our responses to autism than our NT relatives. The NT parents when confronted with the realisation of their child’s autism appear to go through Elizabeth Kubler- Ross’s stages of bereavement. Sadly some of them never pass beyond denial and insist on seeking a cure for autism which hurts those of us with autism because it is tantamount to saying that there is something intrinsically wrong with us. No one can fault a parent who seeks to free their child from co-morbid conditions which occur with the autism and there can be many. No one can fault a parent who takes action to mitigate the adverse effects of autism particularly the communication problems. No one can fault a parent who tries to make this world a better place for their child to live. I do find fault with those who treat autism as if it is a disease, I am particularly horrified by those who want an ante-natal predictor of autism so that parents can kill us in the womb, this is again tantamount to calling us a disease, saying a parents convenience is more important than our right to life is very hurtful. It tends to be these parents who deny us the right to speak for ourselves. However society is changing and groups which previously wouldn’t have accepted people with autism in positions of responsibility now do like the NAS.

I think it must be said that even those parents who deny us our right to life as we are, are still warriors. The parents of autistic children are leading the fight to secure the education and the support autistic people need to lead fulfilling lives. It is parents who are campaigning and fundraising. It is the families of autistic people who are leading the struggle to make the world aware of autism and the needs of autistic people. The parents and siblings of people with autism have real needs that society should be making an effort to address. The needs of autistic people should not be confused with the needs of their families.

The next group involved with autism are the professionals. These tend to fall into two groups those actively trying to make life better for people with autism and their families and those who see them as a source of income. I personally accept that there is a place for alternative therapies in the support of people with autism and their families. Sadly there are people both in the orthodox medical community and the alternative who seem happy to peddle any treatment that will make them money. I think there is a place for untried treatments, unless we try something we won’t know if it works but we need to have stringent – but open-minded – oversight of experimental treatment.

I will finish where I began yesterday with those who have no connection with autism, who have – at first – no commercial interest but who having encountered autism become its passionate champions, some paid others voluntarily.

Whatever our reason for being involved with the “Autism Community” it is time we learned to respect each other and work together. We should share more of our successes and resources. Where we differ let us do so courteously and logically. When we can support another let us, and when we cannot, let us deny our support politely and with reason. If we must oppose the opinions or actions of another let us be moderate in our expression, let us explain our position politely and logically without allowing emotion to move us to a lack of respect. Above all let us wherever possible present the world with a united front and campaign for our common needs. Even if we disagree among ourselves let us not let others exploit our differences.

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