Why I love my tribe

A long time ago I didn’t have an autism diagnosis. I felt very alone, like I was the only person like me in the world. Some years later I gained a diagnosis of something called Asperger Syndrome which I thought meant I would be a social outcast forever. I interpreted the diagnosis – made in 1994 when there were very few services and less understanding of autism – as being a condemnation to eternal nerdiness and justification of everything the bullies at school said about me.  It took me another seven years to accept my diagnosis. I wrote a book about my life and still I felt isolated. Most of the autistic people I met were older men who liked technology and I didn’t feel lot of connection.

In 2009 I attended a conference as a speaker – my first autism conference. The topic was women and girls on the autism spectrum and I found myself in a room full of fellow autistic women and girls. This was the moment that I stopped feeling alone in the world. This was my moment of finding my tribe. I felt such an amazing feeling. I felt like I had come home after a very long time away.

Since 2009 I have a lot more autistic friends – of all genders but often women. The world has changed in some significant and some subtle ways. Social media seems to be the most meaningful addition to social life from my perspective. As a writer and advocate I love the ability to share ideas and books widely and have conversations.The social side of social media is often great for autistic people too. Many of us prefer typed communication to spoken or face-to-face communication so things like Facebook and Twitter are obvious places for autistics to converge.

I have met many people who have become friends and colleagues on social media. I belong to many online autism groups run by autistics . Today I attended a lunch organised by on of the groups I belong to. I had already met most of the guests but there were a couple of new faces. We were at the restaurant from 1pm until after 5pm, mostly just talking and sharing experiences. I left with the intent of catching  a train to the friend I am currently staying with and found that most of the people from lunch were still talking outside. I was offered a lift and spent a very pleasant half hour catching up wth someone I rarely see in person but communicate with regularly with online. Today’s lunch epitomised what I see as my experience shared with autistic friends – meaningful conversation, shared understandings and connections and feeling able to be ourselves without fear of criticism or bullying. We outnumbered the staff in the restaurant which amused me and the staff were in fact really nice. As is usually the case when I am among my autistic peers, I felt I could be myself and I think probably everyone else there did to. For people who so often feel we need to mask who we are and deny our own identity, we have a great time being ourselves.

Of course autistic people do not all get along and, similar to neurotypical people, not all autistics are respectful, thoughtful or kind. I have a moderately lengthy list of autistic people I have blocked on social media over the years. I should note that the reasons for blocking people have never been the stereotypes of ‘poor autistic behaviour.’  The fact that we have a tribe does not mean all the members of that tribe are people I want to spend time with, but having a tribe has been such a helpful and empowering thing for me.

These days autistic young people and kids are often able to find their tribe and get the benefits of belonging to their autistic peer group at quite young ages. I am so happy to see those connections happening between autistic young people. I felt completely alone for so long but I think that sense of isolation and otherness is less often the case for young people now.

it would be great if all autistic people and access to an appropriate diagnosis and the chance to connect wit their neurodivergent peers.

My experience of finding my tribe had a huge impact on my sense of identity as an autistic person. I felt I didn’t need to hide who I was and act and mask and pass. This was a big step for me as I spent most of my teens and young adult years trying tone someone that I wasn’t. Along with finding my tribe came my growing sense of pride in who I am.

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Why I talk about Autism and resilience so much

In 2012 I met a young autistic man. We will call him Adam. Anyone who has been to one of my talks on employment, education or resilience  will probably have heard this story. When I told Adam I am autistic, work full-time in Government administration and – at that point – had one published book he said ‘You’re lying. That isn’t possible.’ I was keen to defend my integrity but then realised that in Adam’s world at least, an Autistic person couldn’t do those things. Adam and his parents had been given a deficits-based view and it was clear Adam had not been allowed to undertake all that many things which challenged him. At 21 he had a year nine education and had not engaged in any study in the preceding six years. He had gone onto the disability pension as soon as he was eligible, at the age of sixteen. I saw Adam and felt for him. I thought that he had been done a big disservice by all the deficits thinking, the fear that if something was hard he would be upset or have a meltdown which must be avoided at all cost. It was almost as of the things which had bee done with the intention of caring for him and making his life more pleasant as a child had in fact backfired. At the time met Adam I had always believed that an early autism diagnosis was a positive thing, helping autistic young people know their identity and get the supports they needed to navigate the world. But the world Adam navigated was his bedroom and the virtual worlds in online games. I do not criticise Adam and I know that life is complicated and people can struggle to engage with the world for a number of reasons. All I knew was that I wanted to help create a world which autistic young people could be proud of who they are and take on and overcome the challenges they need to engage in life in the best way for them. At that moment of realisation my work in advocacy began in earnest.

I interpreted the main issues Adam  was facing as a lack of being allowed to take on challenges and risks and to be supported through those. The primary issue in my mind was that lack of capacity for resilience was holding people like Adam back. This became a big motivator for me and still is what drives my passion. My Wonderful World of Work book was written as a direct means of addressing the issue I saw around resilience and autism.

Resilience to me is about being able to take on challenges, work through them and come out the other side with confidence an mastery. and that confidence and mastery can translate across and into other challenges and areas of life. This is not a quick process and it does not stand alone. Things like self-esteem, confidence and independence  are all related to resilience.

One thing to clear up about resilience though. When someone tells me that – usually an educator – has told them that their autistic child will not be bullied if they ‘get some resilience’ it makes my blood boil. The person saying that is not speaking about resilience or anything close to it. What they are doing is dismissing and invaliding that child’s experience, They are blaming the victim. No matter how a child became a bully, the victim of that bully’s poor behaviour is not responsible for the bullying behaviour in any way. That is NOT resilience.

Genuine resilience has a range of benefits to autistic children and adults.

I am interested in this for a number of reasons in addition to Adam. One of them is that I used a process of controlled challenges to build my own capacity to work after being outside the labour force for almost ten years in my early adult life. I didn’t articulate or understand that I was ‘doing resilience’ and it was quite intuitive – it just  seemed like a good approach at the time! I went from having a severe experience of perfectionism at a dishwashing job resulting in mental health issues requiring hospital. My issue was the perceived level of responsibility at work. Even though the worst mistake I could make in the dishwashing job would probably be to send a dirty fork out, in my mind if I screwed up the whole business would go broke. At the time this happened I didn’t for one moment think I would never be able to work, despite that seeming the likely outcome or my problematic work history, Instead I thought ‘I can’t work now, at this moment in time’. In the next five years I built my work resilience  by working as a volunteer in a gallery, building confidence from that to having a very small business doing video editing for my art school colleagues, building confidence from that to work in a charity and then after six months of that and the publication of my first book moving on to a full-time professional role. I had built my resilience  for work from being terrified of the tiniest amount of responsibility to working in a corporate role with lots of responsibility. I have been in my corporate workplace for almost eleven years now and  have even more responsibility at work and in my advocacy work too. I rarely think about the responsibly, just do what I need to do.

This should be seen in the context of challenges faced by Autistic people in completing study and finding work. This example shows me managing my individual issues with work though resilience. However there are also broader social issues and disadvantage which me getting a job didn’t and couldn’t overcome. Addressing these issues does require a broader approach than expecting individual Autistic people to work through their individual challenges.

And there is a bit of an ulterior motive for this post. (Cue shameless book plug!) My friend, colleague and co-author Dr Emma Goodall and I have a book for parents to support their autistic kids aged 2-10 to build resilience which is coming out next week. It is one of two, with a book for parents of kids and young people aged 11-20 years expected next year. The books are really practical and written from a strengths-based perspective. Their focus is on understanding and supporting autistic kids to navigate the world and become fulfilled adults reaching their own potential, whatever that may mean for them.  Here is a link. I think you can preorder if you are keen: http://www.jkp.com/aus/the-practical-guide-to-resilience-for-parents-of-children-on-the-autism-spectrum-book-1-2.html

And here is one of the best talks I ever did which thankfully was filmed and put on YouTube – my 2013 talk for TEDx Canberra. Please excuse the use of terms like ‘ASD’ and ‘Disorder.’ Things have changed a lot in the Autistic Pride movement since then., Despite the dated terminology it is a good talk.  https://www.youtube.com/watch?v=pqdGb4TraFk&t=7s

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This is me speaking at TEDx Canberra

Autistic with attitude – how our thinking shapes our life

Twenty or so years ago I was very unwell, in a dark place. I hated myself and wanted no part in the future, A psychiatric nurse set me what was then an impossible task. She asked me to write down five pages about my ultimate goal and the steps I would take to achieve it. The is actually quite a useful strategy for some people who are depressed but to me it was an unattainable task. I didn’t even have a positive goal – most of my thoughts on the future centred around me not being in it.  The five pages lay blank and the nurse had to rethink her approach to encouraging me to be a bit more positive and future-focussed.

Fast forward twenty years and I am in a bad space again. Mood issues, some pretty odd experiences that my history tells me relate to psychotic illness – people insulting me in public, seeing ghosts where there (hopefully) are none, believing I am dead and everything happening is in the afterlife, that kind of thing. Yesterday I had a bit of a vent about a colleague at work which threw me into a spin – can I trust myself or will I damage my reputation with aggressive or rude behaviour?  After work I was in the supermarket complaining about someone in front of me in the self serve line leaving me with 15 cents to pay before realising it was the cost of the bag  I had just scanned five seconds previously! So as I went to bed last night you can imagine that I was more than a little anxious and uncertain. I started to unpack the issues and thought that I have had a diagnosed mental illness for 22 years and mood issues and psychotic symptoms are actually something I manage all the time. I also told myself that instead of worrying about the future I should focus on looking after myself in the present and that if the worst thing I was experiencing was some symptoms I have a lot of the time then that was far form the worst thing that could happen.

These two scenarios paint a picture of two very different people even though they are the same individual. The key to this change is two very different attitudes to myself and the world. The younger Jeanette actually wanted and sought out negative experiences. Oddly enough she felt safer in prisons and hospitals than she did in the ‘real’ world. If I remember correctly that version of me was never positive but somewhere along the line she gained some very positive thinking and a more useful attitude.

People used to say to – and about – me that I needed to see things differently, to take responsibility and look out for myself rather than destroying everything I had. These statements were not helpful to me at the time but when I did decide to change my approach they formed an important part of my understanding that people cared about me. I can pinpoint the moment that my attitude started to change. I was in a residential  mental health program. The difference between this program and supports I had before was that I was trusted and respected by staff at this place. Instead of being seen as a ‘management problem’ I was viewed as being someone with potential and who was worthy of support and care.

My embryonic positivity grew incrementally and blossomed to where I’m at now.

While it is pretty much impossible to acquire a high level of self-esteem and positivity about ourselves right away, it is something which we can build on through life. It often starts from us and those around us thinking that we are valuable and worthwhile as we are.

Your attitude about yourself and having the view that things will improve or at least be manageable in the future is a strong protective factor for mental health and wellbeing. Some tips on how to get this kind of positive attitude if you don’t already have one include:

  • Notice when you put yourself down or criticise yourself, both internally and in the words you use to describe yourself. Every time you insult or criticise yourself challenge it and replace it with something more positive instead regardless of whether or not you believe the positive descriptions of yourself at first.
  • Advocating for yourself and your rights and / or the rights of others. If you have been bullied or criticised for being autistic then do everything you can to increase your sense of pride in who you are and your rightful place in society. This is something you can enlist the support of other autistic people and advocates to assist with – even if you don’t connect directly with them, you can read their words.  For autistic people, a sense of identity and pride is a great foundation for a positive attitude about yourself.
  • Focus on doing things you are good at and that you enjoy. For those of us who are autistic this often relates to our passionate interest. Think about what makes you good at what you do and why you enjoy it.
  • Sometimes it can help to ‘fake it until you make it.’ This means that if you make decisions or actions based in a positive view, even if you don’t feel like doing it, this can sort of trick your brain into shifting into a more positive space. You may need to do this many times. Even if you don’t quickly acquire a  more positive attitude you will have a repertoire of positive acts to draw on when you think about yourself.
  • If possible surround yourself wth people who support you and want you to do well rather than those who will drag you down.
  • Be aware that a positive attitude will not stop negative things happening but it is likely to enable you to deal with them better.
  • Try to see yourself and what is going on in your life as a moment in your journey. We can find ourselves extrapolating out from a negative experience so that we think everything in the future will be negative. Using the example of my mental illness symptoms, there is a big difference between assuming all the misery will last forever and get worse or thinking that I am unwell at the moment but I have some agency to improve my health and it will change over time.
  • Reflect on things to be grateful for in your life. Some people keep a journal and write down two or three things to be grateful for each day.

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