It is with some reluctance that I have started blogging about my experiences as an autistic person. It has been over two years since my diagnosis; I now feel comfortable, confident and settled enough to share – and help others. Holding me back was my strong, innate desire to avoid the spotlight; I prefer to operate in the background.
I’ve always considered myself a facilitator – never a leader or manager. I do not want power or notoriety. I strongly believe that collecting power is detrimental; it will only end in tears. In thermodynamics, collecting energy in one place leads to all sorts of problems. It takes energy to store energy – to maintain it. There is always the threat that it will escape. I find this similar to a person who has lusted after power, and is at the top of the hierarchy – the only way is down. People are always trying to get your power, wearing you down – the cracks begin to show. On the other hand, facilitating is rather like Aikido; it directs energy that is already there, to great effect. Since I do not need to store it within myself – I depend on others to provide it – it does not cause me undue stress, or attract greedy, jealous intentions. Real, sustainable power is not obtained by telling someone exactly what they should be doing, but by realizing their potential – then helping them divert it accordingly.
In my last session, I spoke candidly with my counselor regarding my reluctance. I am never at a loss for words when I am in counseling; probably because it is just two of us, it is a professional environment and I am familiar with the subject matter – me! He insisted that I should be sharing – writing a book, blogging – so that others can read it and not feel so alone, disenfranchised. I guess what people are looking for in my writing is the same thing I look for – common experiences, understanding and sense of comfort. Autism is so incredibly detaching that it feels good to discover you are not alone in your thoughts, experiences, interests, motivations and behaviours. Specifically, my counselor told me I was in a very good position to help, to share, not just because of my years of experience but because of my communication skills. Luckily, I took to story writing very early on and have been writing ever since. Letters, short stories, scripts, newspaper articles, scientific papers, proposals, manuals, catalogues, software development specs – I’ve written them all.
One thing I certainly want to avoid is being any type of a “spokesperson” or “figure head” – the “face of autism”. Opinions differ, but I do not feel the autistic community can have a figure head since we are all so different; there isn’t an obvious trait bringing us all together, like sex or race. As a result, our movement will struggle; it will take time. Historically, movements have learnt from previous ones; they borrow techniques and strategies. Thus the suffragette movement helped the civil rights movement which helped the gay rights movement. However, I don’t think that an open “autistic rights movement” would be as successful for a variety of reasons.
Firstly, prior rights movements were united by something that was very clear – sex, race or sexuality. However, the “autistic community” is not only made up of every sex, race and sexual identity, but each autistic person is unique to begin with; autism has granted each of us unique brains. Thus, I think the general public find neurodiversity difficult to grasp; we are not an obvious, homogeneous “community” with one trait to defend; we are heterogeneous with a spectrum of traits whose expression is unique within each of us.
Secondly, I do not think an organized movement would work because … well – I’m autistic! I don’t want to join in a parade, protest or large gathering. I’d rather stay at home with the cat! Recently, I considered going to the Autistic Pride Picnic in Hyde Park; I clicked “going”. But then my mind got working. I’m not fond of picnics. I don’t really want to socialize with anyone, including other autistic people. So, with some sense of regret, I did not go.
Lastly, I think the general public has been inundated with so much misinformation, and flat out fear mongering, regarding autism that I think years of slow, careful, highly organized education is needed to unravel all the harm we have suffered. Maybe then some autistic people will work up the confidence to organize a clear, meaningful and effective “movement”, for the benefit of all autistic people. It is highly likely that this movement will differ greatly from past ones. Perhaps it will use the latest technologies so that autistic people can unify, and make themselves heard, without the stress of social interactions or gatherings.
In conclusion, while I don’t think I will be joining any public autistic rights events, I agree with my counselor – it is incumbent on me to write about my experiences and help others. I have some skills, and years of experience, and I need to put them to good use for the benefit of others. I also agree with my counselor that I have “come through” my diagnosis and out the other side with a new perspective, strong ideas and a sound strategy. I know how to live the final half of my life – to be as happy as I can be. I’m no longer afraid to discuss my autism openly; I figure I’m at an age where I have nothing to lose and, frankly, my life expectancy is lower than average. So, best make my contributions now; life is one act with no dress rehearsal. Looking across the current media landscape, and particularly the situation in Ontario, I don’t think anyone could blame me for trying!