I spent this afternoon at a Cooking Circles event with Yellow Ladybugs – two organisations which are in Canberra and whose work I really value.

Cooking Circles is a women’s empowerment project which builds connections between women through the shared experience of preparing and eating food together. I have been to a few of their other events and really enjoyed myself and had some amazing conversations. Yellow Ladybugs is a support and empowerment organisation for autistic women and girls. They put on regular activities for autistic teens and younger girls. They are primarily led by parents of autistic daughters and many of the parents have a diagnosis or identify as autistic themselves. Both organisations effect social change through connections between individuals. Both organisations are very powerful in this respect and make a big difference.

My role in Yellow Ladybugs is as an ambassador for the Australia-wide group. In Canberra my role is essentiality being an autistic adult for parents to talk to and share thoughts and to be a sort of unofficial aunty for the girls. Yellow Ladybugs is one of my favourite things in the world. Girls socialise with other like-minded peers, they  connect with their ‘tribe,’ and can ‘be’ in a space where everyone is supportive. Girls can be themselves at these events free from bullies or teasing. I always think about my childhood and how most of the experiences I had in social space outside of my family were not very autistic-friendly at all and anything I did which was out of the ordinary would result in bullying, me being disciplined or my parents being shamed. Of course these things still happen but the level of understanding and respect for diversity around autism is changing in a good way and I see organisations like Yellow Ladybugs as being at the forefront of that movement for change.

Today the girls were making Japanese bento lunchbox-inspired creatures from rice, vegetables and nori seaweed. There were some amazing creations and every time I looked at the table there were lots of small people looking intently at what they were doing. Some of the women organising the event and some helpers were in the kitchen cooking up rice and dessert and washing a seemingly endless stack of dishes!   offered my assistance and was reminded that my value was in talking to people. I’m happy to do my more intangible ‘work’ so got back to talking with parents and girls.

I have always witnessed lovely, heartening exchanges at Yellow Ladybugs events. This time one of the mums told me about taking her daughter for the autism assessment and asking her if she knew what it was all about. Apparently the girl looked all worried and said ‘oh no, Please don’t tell me that I don’t have autism!’. When her mum assured her that the outcome of the assessment was that she WAS on the spectrum the little girl was so delighted and relieved and said ‘I knew something was different and now I know what it is.’ I am still a bit teary as I write that. I think of what learning my own autistic identity cost me, how I hated the very thought of being ‘officially weird’, that I didn’t accept my diagnosis for seven years. Just thinking about that girl and her autistic identity coming so naturally because presumably in her mind it was not at all shameful or a reason to judge yourself as I had brought home to me the importance of the work we are doing.

At the end of the event the were three little girls playing together. Their mums told me they are friends in the world outside of Yellow Ladybugs. I had a great conversation with the girls’ mums, talking about all things autism. The parents are always the people I speak to most, sharing my thoughts and experiences, offering support and examples of how I have overcoming challenges in my life.

When I started on my autism advocacy journey parents would frequently talk about their child as if the child wasn’t right there in front of them. Autism was spoken of like a curse or a tragedy and the parents would say how hard life was because of their kid as if the kid couldn’t hear them. I always think of how those kids must feel, knowing their parents think of them as more of a burden than a gift. Autism can be hard for a number of reasons but when I hear people airing their angst right in front of an impressionable child it breaks my heart. Thankfully I see this less and less. It is not OK and I hope to see a world where this is as frowned upon as hitting children for discipline is now.

At the start of Canberra Yellow Ladybug events the ACT YLB committee often ask me to give a very short speech.  This basically involves me welcoming everyone, telling the girls that it is their event and to have fun and briefly mentioning whatever the activity is. Today I added a bit. I introduced myself as a ‘grown up Ladybug.’ I am an autistic adult woman. The sorts of things I experience are common to autistic children and young people as well. At these events, the girls see that they are not isolated or alone, there are other girls – and women – who see the world through a similar lens to them. Cooking Circles is about women’s empowerment and Yellow Ladybugs is really about autistic women – and girls’ empowerment. Today’s event was a great mix of approaches and collaboration between two organisations aiming for similar goals. I enjoyed it immensely and it was quite different to the other events I have attended. There were lots of girls and most of them seemed to be enjoying the day and socialising with their peers. Imagine if every autistic woman had this sort of outlet from a young age? Being supported to be who you are, being in ‘Autistic space’ and having adult role models as well as your parent/s that support and respect you? Yes, let’s do that.

Thank you to Yellow Ladybugs and Coking Circles for creating such a space to encourage pride, inclusion and engagement. 

A few years ago I was at an autism conference in the quiet room, along with many of the other autistic delegates. We were having this great conversation. I hadn’t ever had such a good conversation with a group of more than a couple of people. Usually when I am in a group of people I don’t know when or how to ‘break in’ and either interrupt or sit there waiting for a cue which I never notice. But in this discussion there was an amazing flow of ideas and sharing of thoughts, We ‘got’ one another – not just with the topics we were discussing but it seemed at a  much deeper level as well. At that point I realised that I knew  how to speak a language that I hadn’t thought of before: I was ‘speaking Autistic.’ I imagined that if a neurotypical person came into this room they would struggle to break in to the conversation, the topics might not interest them and they would feel like an outsider, as I often do in conversations with people who are neurotypical.

I realised at this very significant patin my life that Autistic people  have in a sense a culture of our own. This is why I sometimes capitalise the ‘A’ in Autistic. Neurotypical people are a culture as well, with their own language andcustims. It is like we speak Spanish and they speak Bulgarian. Neither language is better or worse than the other, they are simply different.

From this I also thought that the reason our Autistic communication has not really been defined in these sorts of equal terms until very recently has been due to not only our minority status but on how autism up until very recently was only viewed as a problem, a deficit and an ‘affliction.’ The DSM-5, the diagnostic manual  used in most English-speaking countries to inform autism diagnoses, describes Autistic communication as

Persistent deficits in social communication and interaction across multiple contexts, as manifested by all of the following (currently or by history):

Deficits in social-emotional reciprocity

Deficits in nonverbal communication behaviours used for social interaction.

If you have an autism diagnosis you have most likely been assessed against this or the predecessor of this manual, the DSM IV which, while the diagnoses are different, the deficits-focus is just as evident. The diagnostic literature is strongly based in the medical model of disability. It gives a person a ‘label’ which enables them to access support services and healthcare and things like that. If that is all it is used for then that can be very useful. Autistic people in current societies face discrimination and our experiences can be very challenging. Being able to access services can be incredibly helpful.

However, there is a catch. A diagnosis is not only the means to access support services. In the case of autism  and many other diagnoses – it is an opening to a sense of identity and with that, one’s ‘tribe’ of Autistic peers. There is a clear reason that many Autistic people use identity-first language (‘I am autistic’ rather than ‘I have autism’). Many of us understand autism to be an integral part of who we are. We do not see it as an add-on but as part of our very self. While this is not true for all Autistic people, it is for a great many.

So between the medical model on the one hand and the Autistic identity (sometimes described as ‘Neurodiversity’) model on the other, where does our communication sit? As with any culture, our Autistic ways of communication – our ‘language’ if you like – are vital to what makes us who we are. Unlike many languages though, for a very long time few people have  seen autistic communication as anything but disordered or deficient. For people who do not use verbal speech, this ‘othering’ and dismissing their language can be even more severe.

A very short while ago in the scheme of things some Autistic people started to challenge the ‘you are all broken and defective’ sort of view and declared that we are different not less. Our communication styles are also different not less. Much of the communication difficulty experienced by autistic people stems from that gap in communication between neurotypical and autistic ways of expression. One of the most challenging things for me involves explaining to people that there are different ways of communication to start with!

So to get back to my room at the conference in Autistic space. I realised that I have spent my whole forty-three years of life trying to learn to ‘speak neurotypical’: trying to work out hidden meanings in conversations when I only operate on one level, trying to suss out whether the compliment I gave my boss because I liked her dress had been misinterpreted by my colleagues as something other than was meant, trying to figure out what facial expressions mean when they change so quickly. …And I wonder what the world would be like if more people realised that Autistic is like another language which can be learned by neurotypical people too. I love that I have discovered my Autistic culture and fellow Autistic compatriots. It is a strong position to stand in after so many years of being told I was getting things ‘wrong’ when in fact I was just using a different language.

And when I think about it, the advocacy work I do with neurotypical people form different walks of life is like a lesson in Autistic language and culture. I like that.

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.

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.

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

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.