Springingtiger's Blog

Autism Community and April 2nd

As we approach April 2nd I was thinking about the – so called – “autism community”. On World Autism Awareness Day on 2nd April many people with an interest in autism will be trying to inform others about autism, they will not necessarily be standing shoulder to shoulder nor delivering the same message. People are different, and have different opinions, and have the right to express their opinions. Sadly the hatred that some groups have for others makes a mockery of the term, “autism community”.

In one online discussion about vaccination I referred to my experience of Measles and German Measles, and wondered how any parent could willingly allow their child to suffer so much when they could vaccinate against it. An anti-vaccinationist discounted my experience entirely because I had survived; I got the impression they wished I hadn’t. Even when I am well I am overly sensitive to certain stimuli – noise, light, ambient temperature, touch – any illness involving rashes, pain, sensitivity to light is extremely upsetting, particularly as a child I found it even more difficult to understand what was happening. I find it irritating that people are so ready to deny a voice to others, particularly when they have no experience of autism except as spectators.

It cannot be easy for a parent of a child with autism. My mother told me she sometimes had to hold me tight while I was screaming, rigid and red in the face – I still have problems with hugs. I had an explosive temper and could be violent, when I was four my mother cheered when England scored a try against Ireland; I threw over a table and attacked her. Now I generally only attack inanimate objects when I can no longer control my rage. I think some parents of more severely autistic children resent people with Aspergers and HFA and because of this would have our opinions discounted. What appears to be even more infuriating for some is that many of us would not choose to be other than we are, perhaps without some of the processing issues and other problems, but substantially as we are. I am not sure of the logic of their enmity, perhaps they feel we represent a threat, perhaps it’s because we understand some of what their children are experiencing while they cannot, perhaps they feel our presence undermines their struggle, or perhaps they are just possessive and want everything about autism to be controlled by them. I cannot pretend to understand what a parent of a child with autism goes through, my daughter is very high functioning – a pest, certainly, but high a high functioning pest! I do believe in the NLP presupposition that, “People do the best they can with the resources they have available” and so I believe that the intention of these parents is motivated by the best intentions. (Do I really believe that? I try to).

What I do know is that – regardless of their views on vaccination, alternative therapies, causation, health funding, and other contentious matters – there are many parents and people an the spectrum who give unstintingly of their time – a very precious commodity – and experience to help others either living life with an Autism Spectrum Disorder or worse living with or parenting someone with an Autism Spectrum Disorder. This April the 2nd let’s put aside our differences and work together to make people aware of the reality of autism, its co morbid conditions and treatments for them that are effective, what it’s like to live with, what can be done to allow people with autism to enjoy productive lives. We will always have our differences but we should not allow them to divide us, we are in this together and we’ll accomplish a lot more if we work together!


1 Comment so far
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Totally agree with what you are saying. It depresses me no end, the amount of infighting and competition in the autism community – so many groups disagreeing and assuming the higher ground – we need to all work together.

Comment by Gabrielle Bryden

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