‘You don’t speak for me….’ Autism, advocacy and representation 

I had a bit of a personal criticism of my work today. The complainer saw my work as somehow gelling autism and mental illness together. Apparently I have no right to ‘speak for’ autistic people because my mental illness somehow muddies the waters or cancels it out. Or something. I have had a few of these criticisms which are pretty unhelpful and I won’t waste my time or yours going into the ins and outs. Going beyond the criticism and trolling aspect, these comments highlight an issue I come across which relates to more people than just me: The idea that advocates and activists are ‘speaking for’ autistics and that they should be required to satisfy some criteria to be worthy enough to do this.

There are a few versions of this and they come from some very varied quarters. They include:

  • ‘Parts of your experience (e.g. mental illness) disqualify you from speaking for autistic people because your experience  is not ‘truly’ autistic
  • ‘You are nothing like my autistic child. You cannot speak for my child’.
  • ‘You are not (or alternatively ‘you are too’) political enough to speak for autistics.’
  • ‘Your autism is pretty mild. I don’t think you should get to make commentary on autism given how successful your life is.’

Massive Oh Dear at all of these! They are all quite offensive and invalidating and oddly enough I have been on the receiving end of all four. The main issue in all of them seems to me to be the same: there is some quality of autistic-ness which autistic people speaking about autism need to satisfy in order to be allowed to speak on behalf of the community. These attitudes are really unhelpful and discourage some autistic people from doing or saying anything in advocacy,

In fact, underpinning all these statements is the idea an individual speaks for all autistics or on behalf of us all. This is complete nonsense. When I – or I imagine any of my colleagues – get up on stage to speak on autism I’m, fairly certain we are talking about our own knowledge and hoping that others can relate to that. I have never said and I will never say that  I speak on behalf of anyone, autistic or otherwise. I can’t. I am not them. Sometimes people say they are happy for me to speak on their behalf which is very lovely and affirming but I never actually consciously think I’m speaking for another person or people. I share what I know and hope that others can pick up useful things from it.

Beyond the logic of the thing, the statements outlined above all come with a good whack of prejudice and / or ableism. They are not respectful. Considering how difficult it is for so many of us to speak up and be heard, having others trying to shoot us down in flames isn’t very useful for anyone.

The more autistic people who speak publicly, write, engage in decision-making and do all the other things which are part of advocacy and  / or activism, the better.  However some people are put off after seeing trolling and harsh criticism levelled at their peers and colleagues.

In terms of my own representation, being criticised for speaking on mental illness and autism when a lot of my personal experience and professional experience relates to autism AND mental illness is a bit baffling. Intersectionality – that very helpful idea that people experience discrimination related to the intersection of a number of attributes. So for me, any intersectional groups are Autistic person, person with schizophrenia, woman, and person who identifies and Queer / asexual. The idea that one should ‘just’ be autistic in order to speak and write confuses me. Should Autistic people with other, different intersectional experiences not advocate either? I think the more of us there are speaking from understanding informed by our different perspectives then that is a really good thing as it will help with inclusion and more fulsome representation.

Finally, I have to wonder who it is that gets to decide what advocates say and do and who they ‘should’ be. My work was borne out of an autobiography which thrust me into the autism world in 2005, when I knew very little about anything and Q&A sessions after my talks filled me with terror as I was worried that I couldn’t answer all the questions.  I had no ulterior motive then and I don’t have one now. I did what I do to help make things inclusive and respectful and to try to help improve some of the huge disparities and disadvantages we experience. I imagine that most of the other advocates out there have a similar motivation. To be criticised and told essentially that I am not ‘pure’ enough to talk to people about autism is just insulting and rude.

I don’t really don’t represent anyone other than myself. I am at a point in my life where trolling and keyboard warriors result in anger and blocking rather than me turning their nastiness inwards. However these experiences will be putting other people off saying anything and making them fearful to speak out at all. I don’t like to think of that. It is as if the people criticising those for representing ‘wrong’ are themselves speaking on behalf of all of us and silencing voices of others who could make a positive change. Noble franchise meme

Advertisements

‘Do what I say not what I do’ – addressing perfectionism

There is a Simpsons episode where Homer is unsuccessful in a job interview. The successful candidate goes in before Homer and is asked the question ‘What are your weaknesses?’ He responds with ‘Well, I’m a workaholic and a perfectionist…’ Presumably the meaning here being that the candidate’s weaknesses are actually big strengths. I actually am a workaholic and perfectionist and can report that sometimes those qualities are a good thing but often they aren’t.

I have been talking and writing about the dangers of perfectionism for some time. Perfectionism is like a mixture of anxiety about change, anxiety about performance and fear of failure. Perfectionism can stop people form doing any work at all for fear it won’t be good enough. Some people won’t take on  new challenges because they might do it ‘wrong’ and some will not try new skills or activities – even leisure ones – for fear of not being proficient. I struggle playing games with family because there is a perception I am supposed to be very good at word games and trivia. What usually happens is that I am indeed very proficient but I’m also very stressed which can manifest as being pushy and competitive – not much fun for anyone really.

Perfectionism is a common quality for Autistic people. I can’t speak on behalf of others but a lot of my own perfectionism centres around a need to have some control and knowledge of an uncertain and confusing world. I have immense perfectionism around social situations and if I get it ‘wrong’ I am filled with regret. When a social situation goes ‘wrong’ I blame myself and become highly anxious. I feel like I have failed in some fundamental sense. I go through extreme anxiety and sometimes meltdowns, I feel I need to sort it out instantly and apologise to the person or do whatever I think I need to in order to ‘fix it’. Mostly perfectionism doesn’t stop me from doing much as in addition to perfectionism I have a strong dose of determination and motivation which makes me take on challenging things which I am know I won’t be instantly proficient at. However when I was younger my perfectionism limited my capability to work and also resulted in a major episode of mental illness.

I was just getting my life back together after some years of misery. Everything was a challenge and I was desperate to make the ‘right’ choices so I could have a better life. I hadn’t worked for many years but my aspirations involved working in a full-time professional job and I kew I needed to work up to that ad build my employment confidence. One of my housemates in supported accommodation got me a casual job washing dishes at a restaurant two nights a week. It was not a responsible job at all. The worst outcome of an error would probably be that one of the diners might sent back a dirty knife I had missed. That was it. But in my mind I was desperate to be completely perfect at my job. I was terrified I would make an error that would somehow put the restaurant out of business. My anxiety grew to an immense level to the point that I was highly anxious all the time. Anxiety like that triggers psychosis in me and that it what happened. Not only did that jeopardise my future as an employee, it actually put my life in very real danger. I did end up building my employment confidence armed with the knowledge that if I started getting this feelings of high anxiety and perfectionism about an activity I was doing I should tread very carefully.

So I have known since that time that perfectionism is rarely your friend but it is so hard to practice what I preach with this one. The odd thing is that now it probably looks like a positive quality to anyone who isn’t me, but for me I still struggle with it. I said to a manager I was working wth recently that I was a perfectionist which ‘is good for, you but not so much for me’. This is usually true. I rarely make mistakes at work and on the rare occasions that I do I alert anyone who needs to know and go and make amends. The issue for me is that I am always in state of controlling my world which  – as I tell other people – is largely impossible and so quite stressful. I try to ensure every singe thing I do or say is ‘perfect’. It adds a level of anxiety to my life but means I am very accomplished. Most of the advise and thoughts I share with people in my writing and presenting are things I know and do but managing my perfectionism is a definite work in progress.

There are some strategies I use to help address these things:

  • A sense of perspective is often the enemy of perfectionism. Think about what the worst outcome of an error is because usually our fear is much greater than the situation requires
  • If you feel that if you weren’t a perfectionist about your work or interactions wiht people or whatever you worry about, and that you would be terrible at it and make careless errors, reflect that you are not going to get complacent or careless by letting go a little control. We don’t generally do things we do not want to do. The difference between perfect and terrible is a long distance indeed and it is highly unlikely if you are not perfect that you will go to the other extreme.
  • Work to address anxiety in your life. Anxiety feeds perfectionism so the less of it you have the better. There are a large number of strategies to work on anxiety including mindfulness, psychotherapy, berthing exercises and distraction. The other benefit of this is that it will help reduce your anxiety generally, which has to be a good thing.
  • Appeal to your logic and reason. It actually isn’t possible to be perfect in most of life’s endeavours. If you aim to do the best you can rather than perfection, through the lens of logic, that is essentially the same thing but in terms of your thinking and approach, doing the best you can do is  a much healthier aim than absolute perfection.

IMG_2892

Awesome is a fine aspiration and it definitely isn’t perfection!

Mr Kitty’s thoughts on life, the universe and his human

My name is Mr Kitty. I live in an art gallery called Whimsy Manor with my human whose name is Writer.

I remember a very long time ago I didn’t have a home. It was cold and I had to hunt for rats and mice to eat. I was very scared. Sometimes other cats and dogs would try and attack me, so I got to be very tough and I still don’t like other cats and dogs.

One day I got caught in a cage. I thought this was terrible and I cried and cried. A human came and took me out of the cage. This human spoke in a  kindly one of voice and told me what a pretty cat I was and I would be OK.

Not long after that I got taken to somewhere new. I was scared. But it was actually wonderful because a lady took me out of the cage and held me close. I knew she was a good person and I purred and purred. I heard her say ‘I’m keeping this one because he is beautiful and I love him.’ And there I was at home with my human forever. Every day my human tells me again ‘Mr Kitty you are beautiful and I love you.’

Most mornings my mummy goes out, She says ‘I’m off to work Mr Kitty. See you later. Be good.’ I go and sleep on the bed until she comes home. Sometimes I look out the window at the world. I don’t want to go out there – it is scary and cold – but I like to look. I used to think that my human mummy wouldn’t come home. If there was food in my bowl I would leave it, not knowing if she would ever return. But I don’t do that any more because she always come home and I know she wouldn’t leave me.

She buys toys for herself. I know she likes sparkly things and glitter. She has a whole box of human toys but I help her to share them with me. She says ‘you’re a funny bugger’ and picks me up and gives me a big cuddle. I love that.

IMG_5847

Every once in a while a bunch of other humans come to my house. They all talk and laugh. One of them is a young human with long hair. She is very good at art and shows my human and the other humans her drawings. There is another young human with fluffy hair. I play with it. None of the humans is every angry with me and they all tell me how much they love me. I usually visit all the humans’ handbags and smooch them or climb inside. The humans stay up really late and I always go to sleep before they leave. I think this is called movie night. I like movie night.

My human gets really sad and scared sometimes. She tells herself ‘it’s not real’ and doesn’t even sit at her computer. I go up and give her a big cuddle. She holds me really close and tells me she loves me. I love her too and I hate when she is scared. She always gets better but I worry about her. One time she said ‘your face looks like a demon but I know you are an angel.’ She needs me I think.

At the end of every day my human mummy climbs into the big bed. I climb under the covers right next to her and lay my head on the pillow. My human puts her arm around me and holds my paw. When I wake up later she is still holding my paw.

I love my human. I am so happy at home with her. I have lots of toys to play with and cat food. I say thank you every day with cuddles and purrs. I rescue my human every day, just like she rescued me. I had a good life for a kitty.

IMG_1594

Why I’m not friends with 2nd April and some suggestions to improve this

I will warn you in advance this piece is a little bit of a diatribe. I should first acknowledge that there are some distinct positives around having a time to promote understanding around autism and many groups – Autistic-run and otherwise – do some great work using Autism Awareness April as a starting point. I would not want to ‘throw the baby out with the bathwater’ in this. However I struggle with Autism Awareness April quite a lot. Some of my struggles include:

  • It is an odd premise that awareness alone is a good thing. Every bully I have ever been victimised by in my life has been acutely aware of my autism – or at least that I was somehow different.
  • Awareness alone is an unhelpful concept. Awareness is the very first baby step in inclusion. There are many other steps which should be promoted as well. Things like empowerment, understanding, love and acceptance.
  • Many of the ‘awareness’ activities are not done in consultation with Autistic people. I see April as an event done ‘for’ us not ‘with’ us. I tend to think the first rule of inclusion is not to do things ‘for’ a group of people who face disadvantage. The disappointing irony is that April – which is meant to be about autism is so often not experienced as inclusive by many Autistic people.
  • April as autism awareness moth was not initiated by Autistic people themselves. It is something we have bee ‘gifted’ by the UN. I really have difficulty in this. I see it as a bit like creating and promoting an event around celebrating Aboriginal and Torres Strait Islander cultures but with no Aboriginal or Torres Start Islander involvement and then expecting Indigenous Australians to get on board with it. I often feel like ‘Autism Awareness’ has nothing in it at all for me.
  • It generates some very difficult conversations. The world outside of the autism community often does not know a lot about issues within our community. This is quite understandable. I mean if they don’t have a connection to autism why would they know about issues facing us in any great detail? I find I get genuinely well-meaning neurotypicals proudly telling me they are wearing blue for April which makes me feel very conflicted indeed, to the extent that I have a prepared statement for this situation. I dislike having to repeatedly explain why I am not delighted it is April and why I am not wearing blue and a bunch of puzzle piece-themed things.

So I have posed a number of issues around April and autism awareness here but I try to never pose an issue without offering a solution. The solutions in this issue are potentially quite numerous and thy can be applied at a number of levels. SO in keeping wth  the need to limit length in my blog, i have picked one audience for my suggested strategies. Here is a selection of things I would like to see in happening April aimed at non-autistic individuals and organisations.

  • Be aware that there are many, many  different viewpoints in the Autistic community. There is not one Autistic position on the issues around April and people’s opinions and thinking will most likely change over time.
  • Take on board Autistic requests around events and branding, such as not wanting to ‘light it up blue..’
  • Remember that we are not usually being ‘radical’. Things like autistic involvement in events and services which impact us is a reasonable request. Radicalism usually happens where there is a need for it such as when there is discrimination or abuse.
  • Be aware that we may be more stressed and sensitive than usual on April for a range of reasons
  • If you are planning an event, have autistic involvement in it at as many stages as possible.
  • Read some blogs by autistic writers. There are plenty of them out there and there are some great ones which have loads of helpful advice and information.
  • Remember that being given the blue cupcake at the work morning tea might be the final straw for an autistic person and they might just feel totally ‘over’ April.
  • And be aware that an Autistic person might happily embrace and celebrate April 2 as ‘their day’ and they might want to celebrate with you. We are ask quite different.

IMG_0508