About me, without me & how people respond to legitimate questions

12 02 2015

I was interested in attending a conference being held in Glasgow by an organisation called Autistic Intelligence. They claim to be “a loosely affiliated group of worldwide experts in aspects of autism, a consultancy.” Comprised of writers, educators, therapists, researchers, and campaigners who all claim to have personal experience of autism in one way or another. The first person featured in their “About Us” section is none other than Professor Tony Attwood, a world renowned researcher in Aspergers. So far so good, right?

Well as an autistic person I was a little disgruntled at the price of their Glasgow conference for the unwaged, the low waged and autistic people. The sold out early bird ticket price was £60 rising to £70, an awful lot if you have no or little income. In my mind this excludes many people on the spectrum who do not have wealthy backgrounds or healthy incomes. So I emailed the organisation using their website contact form. It wasn’t my most articulate piece of writing but it got my message across in a particularly autistic style.

Personal information has been started out but nothing has been edited or removed from the following communication.

Hello Admin
You have a new contact request:

I was reading with interest about the upcoming conference in Glasgow but am disappointed to discover that even the now sold out “early bird” tickets for unwaged autistic people is out with our ability to pay. How can you expect autistic people to participate in wider society when a conference set up specifically to talk about us excludes us unless we are from wealthy backgrounds? Given the low employment rate of autistic people, there’s a far higher likelihood that they will belong to the unwaged/low waged category and given that £60 is only £12 less than the weekly income on JSA, the conference is an impossibility for up to 85% of the autistic community. Is this something an organisation set up on the backs of autistic people intended? Is exclusion from discussions and presentations about us the way forward? Added to this is the fact that parents tickets are even more expensive and there is no mention of carers. I could not afford to pay for one ticket let alone a necessary second to bring my carer with me. I am extremely disappointed but not surprised by this exclusion of autistic people.
From: ********@student.***.ac.uk – **********
Telephone:
Subject: Criticism
Senders IP: **.***.***.**

I was perhaps slightly blunt in my email but I’m getting more than irritated with the ‘all about me without me’ rhetoric of so many of these so called autism organisations.

The organisational contact responded within the hour. I have starred out information that I feel is inappropriate to share, although the author at the time obviously did not.

The cost price of this conference – venue, food and drink for attendees, speaker fees and transport and accommodation, handouts, and online-ticket-selling costs – is 70, provided 100 people attend, and there’s no certainty of that. I also give extra 20% discounts to anyone with financial problems.

Meanwhile I don’t get paid for running the whole show, choosing venues and speakers, answering the phone, doing publicity, writing invoices, answering emails like this, most of which are insulting as to my motives.

I am ** *********. I’ve just had a ***** *******, the first in ten years, as I was going up the stairs to bed. I fell backwards and fractured a rib, and did some major damage to the soft tissue in my chest. I was out cold for 3 hours, and on my own. I came out of hospital on Saturday. It will take me 2 months to recover, but I still have to be there in Glasgow to do registrations, and I still have to fund any shortfall on the costs from my own savings if we don’t break even.

If you have a problem, phone for clarifications before jumping to conclusions, please.

B****** J*****

I haven’t stopped laughing at this response. Not at the poor author’s misfortune, they obviously have had a very difficult time of it lately, but at how out of touch it seems to be with “intelligent” autistic people and their predicament: assuming verbal communication or desire to use a telephone; being excluded from discussions and conferences about their very existence due to financial barriers; and the attitudes of ‘professionals’ and many parents of what autistic participation is possible or even permitted.

Come to your own conclusions as to what to take away from this communication. I sure did.

My aim is to ensure autistic communication is heard, respected and valued. I want that our experiences are listened to and built upon when offering services or developing conferences about us. I’ll let you decide whether or not this organisation’s response does any of that.





But you look so normal

25 06 2014

There are probably hundreds of blogs with that title on the net today. It’s something many people with an unseen disability have been told. My response is usually ‘I am normal’ , even although my disability is one that highlights how abnormal I am, or how abnormal I should be just to appease society.

It’s no secret that I have autism. The shell looks fine if a little rotund, the inner workings are somewhat wonkily wired. I’ve often joked that to be a convincing autistic I need to rock back and forth and talk incessantly about trains or numbers. People would be more comfortable with me fitting that stereotype, one where I can garner sympathy, but I don’t. I can articulate rather well, I can even successfully take part in small talk and social chat. I have thousands of acquaintances. Socially I do ok. I am a strong independent person, even if I can’t cook. You will never see what’s going on under the surface to get me to that level of interaction. I look just like you. Normal.

You, who can socialise instinctively. Normal. You, who knows the cues to talk or shut up. Normal. You, who pick up on more subtle forms of communication such as body language or facial expression. Normal. You , who is unlikely to struggle with sensory overload or processing basic information. Normal. You, who probably doesn’t become catatonic at the sound of sirens. (There you go Lex Luther, there’s my weakness) Normal.

But you struggle to read me in the same way I struggle to read you and because you are in the majority, it’s expected I will change to fit in with you. In fact, autism is a developmental disability, I am expected to ‘develop’ my skills and understanding to become normal. Some people make a fortune out of trying to get people like me to develop normal skills so I can pretend I am normal to be like you.

Well you know what? I’m really fucking successful at doing normal. Too successful. I have to convince people of my disability. I have to persistently justify my struggles (or symptoms if you prefer such language), even to people who have known me all my life. They say, “but you’re just you, I don’t care what they label you, you’re still the same to me” and in this statement those who claim to accept me refuse to learn about how my brain works, what my struggles are, or how they could help me overcome them. They silence me with their questioning, ‘what is normal anyway?’ Immediately followed by telling me I should try to understand that I’m different and I can’t expect normal people to understand. If this is acceptance then I don’t get it.

And if I struggle to justify how my brain works to those who know me best, what chance have I got of convincing those who don’t know me that I need help and support or understanding? If my disability was visible, if I hadn’t learned not to stim or hide being ‘symptomatic’ (there I go again with that medical language) I don’t think I’d have to justify myself over and over again. I’m definitely not saying those with visible disabilities don’t have problems with justification, hell I’ve read about ATOS and the WCA, but if someone can see the problem they’re more likely to try and understand it. It’s easier to try to imagine mobility issues than it is an entirely different way of processing and thinking. Physical disability is visibly justified, it makes sense to them that there could be difficulties or support needs. When you look just like them and can pretend on the whole to act just like them, when you finally get the courage to say ‘I need help’, you’re met with ‘prove it’ and if I try to prove it, I’m made to feel like a fraud or a con-artist. Only then to be told, ‘prove it more’.

I shouldn’t be made to feel like I’m faking it just because someone else struggles or refuses to understand. Why should I have to fit in with your world? Why can’t you try to fit in with mine? I do look normal. I am normal. Like any normal person I have struggles and sometimes these require me to ask for help. How I appear on the outside shouldn’t define what I need or get.





I don’t suffer from autism. You do.

2 04 2012

I don’t suffer from autism, I suffer from people’s unwillingness to accept difference in the human race. I don’t suffer autism, You do.

So today is World Autism Awareness Day and of course the media feel the need to recognise it in its own inimitable way. The Guardian for example have pictures of kids at a SEN school with descriptions of typical autistic traits underneath. Is it in pictures because we cannot read? Does it simplify autism for us or does it simplify the whole thing for you? Only just a bit* (*majorly) patronising, but as someone on twitter said, “it raises awareness for the poor souls”. This is the part of the problem, it is assumed people with autism are poor souls for being different to the neurotypical population. It also often assumed by the media, autistic people are all the same with the same behaviours and the same traits, it ignores the fact there is a spectrum or any individuality within that spectrum, just the same as neurotypical humans. The media perpetuates this ‘poor soul’ myth by talking of our “suffering a condition” that is in fact a neurodevelopmental difference. Medically they call it a disorder because it does not fit into the neurotypical view of normality.  What is normal anyway?

Much of the suffering of people with autism arises by being forced to conform to the alleged norms of a neurotypical society. Because our “disability” isn’t one that can be easily seen, it doesn’t have the same social sympathy factor as someone with no legs in a wheelchair. Indeed often most sympathy I see is directed towards long-suffering parents. And therein lies the reality of “suffering autism”. The parents and carers, the neurotypicals, they have to suffer autism. The parental desperation for the autistic person to be “normal” and to fit into or embrace their way of life causes the suffering. Asking or forcing people who have their own way of doing things to ignore their natural compulsion and live to your unnatural standards is what causes the problems. Shoehorning any human being into a box that not designed for them is problematic, regardless of the label you wish to apply to them. Leave an autistic person to live life as they wish, in the manner they wish and they’re happy as can be. No meltdowns. The parents and carers aren’t quite so happy leaving them be though are they? We send autistic people to behavioural therapy or crave treatment to make them fit in with neurotypical life. There is no recovery. Treatment means behave more like a neurotypical person. It denies the autistic person the right to be just who they are. We are telling people with autism they are wrong the way nature intended them and to conform to the neurotypical ideal.

Of course life doesn’t allow for people to live however they wish. How dare we even contemplate letting someone live a life that is so inherently different to that which is understood by neurotypicals. We all must conform. We must all be the same; same clothes, same hairdo, same thought pattern, same tv, same car, same semi-detached house.

Could it be that the neurotypical community have it wrong? Perhaps the idea of rejecting social conformity needs to be embraced among the neurotypical community. In fact it seems to me this is where the biggest problem lies. Neurotypicals are so desperate everyone must conform to their ideals, that they can’t see the damage they are doing to themselves and society as a whole by shunning their own individuality.

I don’t want to conform. Long before I?d even heard of autism, I didn’t want to be like everyone else. I knew I was different, they knew I was different, there was a happy status quo, they didn’t want me being like them, I had absolutely no desire to be like them. Neurotypicals live in a cluttered complex world. Subtle nuance replaces upfront. Body language may reveal a truth that their words leave behind. Maybe if more neurotypicals tried to live in an autistic world, there would be a lot less bullshit. Imagine it; no spin, only common sense, honesty? you can’t imagine it though can you? You don’t want to try to imagine living in an autistic world and instead it is expected to force an autistic person to live in a neurotypical world. A world that is alien to us. A world that is confusing, if only because you make it needlessly so.

Is this my utopian ideal? Yeah of course it is. My opinion, my utopia, but it is no less utopian than the expectations of the neurotypical community that we can and will, or even want to, just fit in with their way of life. It is assumed  that we all want to but cannot. Have you even considered that some autistic people just don’t want to live and be like you? Could it be so?