A ‘gentle manifesto’ – Autistic advocacy and representation

Until very recently, the prevailing view in society has been that autistic people are incapable of doing much at all and needed even the most basic decisions made on our behalf. Ideas of Autistic Pride and Neurodiversity would have seemed almost universally preposterous until quite recently.  Virtually all the discourse and thinking on autistic people was told by neurotypical  people. This is the background which still informs a lot of people’s thinking in our current world.

Along with countless autistic friends and colleagues and neurotypical allies, I stand against that view. I see that autism is more a difference than a a series of inherent deficits Many of the challenges we face are not intrinsically related to our autism but to our experiences intersecting with and trying to navigate what is often a very hostile world. We hear the stories of bullying, violence and victimisation and horribly they continue.

But this post is not about doom and gloom. It is about representation, about advocacy, about the need for us to be heard and to take our rightful place in the world. In recent years in a number of countries there have been campaigns, led by Autistic people to change the way we are viewed. An example is this blog. I am one of what is now a vast number of autistic commentators talking about autism and other things. However I do  feel that my autistic friends and colleagues, all the bloggers, vloggers, advocates and activists are still at a disconnect with the wider world. The job as I see it is to close that attitudinal gap.

It is vital to see beyond our borders to the experiences of people in other counties. What is true for Australia where I live is not in other places and vice versa. The task of autism advocacy is international.

The is my list of areas I really want to see changed:

  • One of the things we are up against as a community is what I call legacy attitudes. By that I mean the sorts of thinking of neurotypical people who have been ‘doing for’ Autistics since forever. They carry these views with them. Changing legacy attitudes can be very hard as they can be very ingrained and challenging them is like challenging the person’s core beliefs. I find some of the neurotypical people who are new to providing services to autistic people are actually way ahead in their views around Neurodiversity than some of the people who have ben involved for years who are holding on to views which are thankfully becoming discredited.
  • Organisations which provide services to autistic people – children and /or adults – need to consult with autistic people at every stage. They need to have autistic people on their board and those autistic people need to be actually have their views heard and taken on board. I have been the token autistic person in a lot of settings and it is useless in terms of making change and very frustrating and upsetting for me.
  • Attitudes around people who do not use verbal speech really need to change. The invalidation of people who use augmented and assistive communication needs to be addressed. Not having a verbal ‘voice’ should not mea the person has no voice.
  • There needs to be an understanding that autistic people are actually the most proficient experts in being autistic (I know. amazing hey?!!).
  • The information we get when participating in consultations and projects needs to be accurate and include everything we need to know to inform our decision to participate or not. A Facebook friend recounted being invited to consult on what seemed to be an excellent web design project. Then at the last minute she and her autistic colleagues were informed that the funding for the project was from an organisation known widely as being invalidating and damaging to autistic people. Information on the funding body should have been given at the outset.
  • Respect, respect, respect. I have friends from other demographic, intersectional type groups who experience similar sorts of issues that I see around Autism. Respect is the key to meaningful engagement and relationships. True respect I think comes from the point where people view me – or whoever – as having the same value as them.
  • An end to the assumptions of incompetence, infantilising and dismissing Autistic perspectives. An adult is an adult, regardless of their interests or presentation. As a speaker and author I am often on the receiving end of this. The classic is when my keynote presentation  is announced with ‘And now Jeanette is going to give her little talk…’ This paternalism might  seem innocuous but it goes to people’s basic attitudes around Autistic people.

I think  we are at a bit of a turning point now. There is more representation of autistic people in decision-making bodies, a lot of the research conferences and events have a number of autistic speakers (although it should be noted that there are some problems with representation and respect in a number of the events which need to be addressed).  Attitudes in wider society are beginning to change.  We do have a very long way to go still.  We need to address the underlying attitudes that drive the issues we face. We need to move past the ‘doing for’, the paternalism, the lack of respect for us and our experience.

I am not a revolutionary. If this is a manifesto it is a gentle one but these are my thoughts. It takes all kinds to make a difference. I am happy to do everything I can to help make our world a place where autistic people are valued and respected.

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My journey with jealousy, or why I don’t want to be the only autistic in the village

I often joke to my friends that people with tall poppy syndrome might struggle to have me as a friend because I am absurdly accomplished these days. What I don’t tell them is that if I met someone with my level of accomplishments ten years ago I would almost certainly have struggled with jealousy and avoided that accomplished person.

Now I’m getting very honest here but my own autism advocacy journey which bought me to the amazing place I now inhabit was ushered in by an amazing mentor. She was incredibly supportive but after my first book came out I started to feel threatened by her success and found it hard to maintain the friendship with all those insecurities and status anxiety going on. It was definitely not a situation where I covered myself in glory. I still feel shame and regret at my actions.

I always found my reaction of jealousy odd because as wasn’t that I didn’t want  people to succeed, just that I felt intimidated when they did. Looking at th issue I knew that I was never competitive because I thought myself better than the person I saw as a rival. In fact the opposite was true. I took this feeling with me well into adulthood. What it meant was that I became obsessed with recognition and success because i thought having those things would signal that I wasn’t inadequate. It wasn’t really much fun being inside my head at this point.

I used to think my jealousy was based in me thinking I was somehow better than other people and ‘deserved’ the success they had more than they did. The sign this wasn’t the case though was that I absolutely hated my jealousy. I hated thinking that way about my colleagues and friends. It was a thought process I would have given anything to rid myself of.

This is an issue for others as well. I have been on the receiving end of jealousy and tall poppy syndrome and it is very upsetting. I was at an event once and one of the attendees was incredibly rude to me. I had never met this person before and couldn’t work out what I was doing wrong. A friend who was also at the event told me it was due to the other person having an issue with ‘famous people’. Which is silly because I’m not a ‘famous person.’ I am well known in a small community in a country with a  small population. In the scheme of things fame-wise I’m not up there at all. I don’t even have a Wikipedia page! But it was quite hurtful.

Autistics frequently face disadvantage and discrimination. I think it is best to support one another rather than see others as rivals. I feel very bad about my years of comparing myself to my autistic colleagues and feeling intimidated because, in my mind they were somehow better than me.

I find it helps to think about timelines in this space. Twenty years ago I hadn’t written any books, ten years ago I had written a book but had a much smaller profile and now I have a bunch of books and way too much  profile for a Jeanette to manage without resorting to a lot of debriefing with friends, cursing at the laptop and repeatedly pushing my ‘NO!’ buzzer! Other people have a timeline too. You might not get an opportunity you want one year but you might the next.

Opportunities tend to be fleeting and our ambitions and aspirations  change over time. Another person’s success does not really detract from anybody else’s. There are plenty of rewarding things to do out there.  The more autistic writers, speakers and advocates the better! I really honestly don’t want to be the ‘only Aspie/ autistic in the village.’

The other thing about jealousy and rivalry is that you do not know what the person you are having difficulties with is going through. Some ‘successful’ people are really struggling but we don’t see it. I have learned that the only person you should ever compete with is yourself.

I have learned how pointless and divisive jealousy is. Success is different for each person, as is ambition. It remains a great disappointment to me that in order to get past my jealousy and insecurity I had to become what my own personal version of ‘successful’ was. However I am happy I got there because it is so much nicer to be free of this burden of insecurity. I am so happy to be abel to willingly nominate colleagues and friends for awards, to celebrate the success and achievements of others without thinking I am inadequate by comparison. Comparing yourself to others will very effectively ensure you feel miserable. Thankfully the converse of that is also true – celebrating the successes of your friends and knowing you are a individual with your own path to follow is a pretty good feeling.

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Me with Tim Sharp and Temple Grandin  – and NOT feeling intimidated!

An employment epiphany – or how I’ve had autism and employment all wrong

The other day something happened to me which I doubt many other people ever experience. I had an epiphany about employment and was very happy about it. Employment is one of the things I am asked to speak about quite a lot. In 2014 I wrote an activity-based book to help autistic teens and young adults build their confidence and knowledge around employment to help them find work when the right time comes. Supporting other autistic people to find suitable employment and build their skills around managing at work is a great motivator for my work in the autism community. I love talking about employment and have spoken to thousands of people about autism and work over the past few years. I pride myself on being quite good at talking about employment and autism. That is until the other day when I identified a significant gap in my approach.

I was asked to write a chapter on autism and employment for an excellent book by a number of autistic women authors. I thought – and probably said to some people – ‘I’ll get that done so quickly. Employment is one of my ‘things.’” So I dashed off a chapter and it came back with edits. The editor pointed out that the chapter was quite negative. It was a surprise and I always thought my approach was focussed on the strengths of autistic employees. In fact it was but the negativity was coming from somewhere else. My epiphany made me realise for the first time that strengths-based approach to autistic people finding suitable and meaningful work also needed to include more of a strengths-based attitude around the workplace and employer.

Up to now, most of my discussion of the position I suggested autistic job seekers and employees take was quite a defensive one. ‘Employers often discriminate against you in recruitment so put strategies in place tp address this’…’, ‘Bullying and harassment happen at work so keep safe and know your rights…’, ‘Think about how to ‘disclose’ your autism…’ My position seems to have been that while autistic employees can be amazing at their job and they should build their confidence, in fact the other side of the equation – their employer, manager and colleagues – were almost certainly going to cause difficulties through bigotry and inaccurate assumptions.

A couple of weeks ago I posted one of my  memes which said ‘Something awesome might happen’. I think my employment epiphany might have centred on similar thoughts. I am amazed that i have been in this mindset for so long. I imagine it stems from some of my own invalidation in various workplaces in the past. The negative implications around assuming your employer will discriminate against you include:

  • It can make the autistic employee focus on their perceived deficits and feel hey need to justify their existence as a person and an employee rather than focussing on what they do well and can bring to their role.
  • It can also make autistic employees unnecessarily concerned and hyper vigilant, causing stress and self-doubt.
  • It can mean they are less willing to discuss their needs with their manager for fear of discrimination.
  • It will most likely make forging productive relationships with mangers and colleagues a lot harder.

Of course discrimination can and does occur but having that as your starting position is probably not as helpful as approaching  the workplace with the idea that ‘something awesome might happen’.

I actually had my epiphany while revising the employment chapter. The first thing I did was change my thinking around the concept of ‘talking about your autism / disclosure’. In the past I would have talked about how telling your manager you are autistic might be a good idea for how it could enable you to be ‘out’ at work and access workplace adjustments and so forth. This time I added that the ‘disclosure’ conversation could be a great opportunity to showcase your particular skills to your managers and proactively explain how any workplace adjustments you need are low cost and easy to implement. Talking about the employee or job seeker’s autism can be a big positive and does not necessarily need to be something to ‘manage’.

It interests me that for so many years I thought I was very positive around employment and focussed on all the good things we can do. However in the first draft of my chapter almost every single element was coming from the position that employment is difficult and employers are more likely to discriminate against us than not. I feel a bit ashamed to apparently be an autistic expert looking at employment and being so negative and essentially still focussing on the difficulties around autism and work rather than the positives. I am very happy to have had my epiphany and change my view. Of course discrimination, bullying and other horrors can occur but I think I have been doing all of us a disservice to advise autistic people to come from an assumption that work is almost certainly going to be discriminatory and that they have to be on their guard the whole time. Instead maybe as autistic people we can bring our knowledge and strengths to work and start from a position that we belong in the workplace and shouldn’t have to justify our existence. And to my fellow autistics I apologise that it took me so long to come to that particular realisation. A good opportunity for me to learn from an error which I suppose is the main purpose of errors.

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