Destination Neurodiversity 

I just spent two days speaking at the Victorian Autism Conference in Melbourne.   It was a great experience. I spoke in a break-out session on mental health and Autism on Thursday and gave one of the keynote presentations, about resilience, on Friday morning. I usually enjoy these sorts of things both because I love sharing my knowledge with others and I am an extrovert who gets a lot of energy from standing up in front of an audience. Unfortunately many events I have attended in the past have focussed on Autism have in fact been quite poor in terms of encouraging and supporting Autistic people to attend and including Autistic perspectives within the program.

I go to a lot of these sorts events. This one was a little different to others I have been involved with – actually quite a lot different. The organisers – Amaze / Autism Victoria – intended this conference to be inclusive and based in the understanding of neurodiversity. They had one international speaker, Steve Silberman, author of Neurotribes – a book which has a strong focus on the neurodiversity movement. I had dinner with Steve and some of the other speakers and we had some very interesting conversations. I really enjoyed talking to Steve and he seemed so attuned with the sorts of issues which are dear to my heart as an Autistic advocate.

This week’s conference was noticeably different to most of the ones I have attended in the past. There were considerations and measures to address sensory issues, a large proportion of the speakers – I think around half – were Autistic. Some of my Autistic friends were involved in planning the event and their thoughts and concerns seemed to have largely been taken on board. There was no discussion of ‘cures’ or ‘Autism epidemics.’  When I arrived and went to register, one of the events company staff saw me and gave me my lanyard meaning I didn’t have to queue. There was an app with the program and useful information on rather than one of those sad little bags you usually get at conferences. This was awesome. I hate the conference bags you get because I don’t look at the contents and then struggle with my environmental wishes to not waste stuff and throw anything potentially useful out and the sheer ugliness of the conference bags.

I left at the end of the first keynote and spent the ten minutes the speaker was taking questions by myself in the quiet room. I wasn’t overloaded but as I have more of a profile these days, I often find the breaks a bit overwhelming, with people coming up to me all the time. One of the Amaze staff saw me and asked if I was OK. I assured her I was and then I was alone for a glorious fifteen minutes, after which I could go and do my thing and talk to others.

There were some issues but many of these seemed to be around the venue rather than oversights or omissions on the part of the conference organiser. It was not a perfect conference from a neurodiversity perspective but the intent was clear and I for one really appreciated it and think it was far superior to many Autism conferences I have attended in the past.

This takes me into some interesting territory. As an Autistic adult, author and speaker I go to many Autism events, most of them organised by Autism organisations who provide services to Autistic children or adults and our families and supporters. It seems odd that I have been speaking publicly about Autism for eleven years but it is only now we are getting an event – and hopefully more events in the future – focussed around neurodiversity and trying to be accessible and inclusive of Autistic people – you know, the people the conferences are about!

I am 42. This means that the Asperger’s diagnosis was first available in Australia when I was 19 – and had been through school and all the hell it entailed. I was an undiagnosed Autistic girl in a school system which had no infrastructure to support me even if I had a diagnosis. I went through my twenties being abused and attacked and misdiagnosed with extremely unhelpful mental illness conditions which I didn’t have. I finally accessed assistance with an Autism-specific organisation when I was 28, signing up with an employment service for Autistics which no longer exists but which had a very paternalistic attitude to the clients who essentially paid its bills.

I feel that all the things I achieved  – a Masters degree and professional job – resulted mostly from my determination,  strength and resilience with very little assistance form any Autism organisations. The best help I got from another source, was Autistic author Donna Williams mentoring me and supporting me through writing and publishing my autobiography. Since then a lot of the assistance I’ve had – both personal and professional – has come from other Autistic people

I get to this point in my life – and to the point in the life of the Neurodiversity movement – and wonder where things will go. The relationships between Autistics and services assisting  us do seem to be becoming less based on ‘them and us’ and more collegiate but I think this will be an ongoing journey requiring goodwill and respect.

On a personal note, I find the ‘them and us’ things – the organisations which tolerate or condone abuse, the organisations like the one which offered me a speaking opportunity but stated they could not pay me anything, not even my airfare and accommodation, because they were paying a non-autistic keynote several thousand dollars and had no funds left for me. I don’t want the crumbs that fall from the table – I want the whole enchilada, inclusion and respect-wise!  In order to get this, I think we, as advocates, need to educate and support many Autism organisations to come on that journey too, although there can be a grey area. I often speak and write for organisations which I don’t think are 100 per cent ‘kosher’, mostly because the audience tends to be educators, parents and others who support and work with Autistics and I would rather they got their message about Autistic knowledge and experience from me or a fellow self-advocate than from some clinician who seemed to stop learning about Autism in 1997. In fact, I often find that through being involved with organisations during the panning stage of talks, I get a chance to change thinking with the organisers as well. It should be noted though that some things do not need gentle education and support to change attitudes, they need immediate action and sanctions. This refers to activities which are abusive to Autistic people.

I think we are living in what may be a very exciting time. Steve Silberman was interviewed on the ABC News Breakfast yesterday and he described the Neurodiversity movement as being the civil rights movement of our time. Hopefully my Autistic advocate colleagues, Ally colleagues and I will be making sure nobody has to ‘sit at the back of the bus’ and we can take our place in the world as we deserve to.

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7 thoughts on “Destination Neurodiversity 

  1. It’s funny; I am dreaming of a world where I have autistic friends to call on to do zany stuff with, where we are employed in jobs that we are proud to be doing, things don’t need to be explained and quiet rooms are the norm. Oh and we get cut proced Snoezelen rooms for our homes. (Ha!)

    But to get that requires all of us going public, standing calm in our strength and having a voice. The irony is that some of us cannot communicate to the level required to be heard, let alone understood. I am not saying we don’t try, that it is impossible. We may just need to discover more lateral modes of communicating effectively. It is scary. I finally have a dream and something to say.

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  2. It took me a long time to be able to publicly say ‘I am Autistic’. I was so broken down by all the hate I experienced. I couldn’t even accept myself as Autistic for seven whole years after I was diagnosed! Hard to imagine now. At the Conference, Steve Silberman was relating being gay and being Autistic in terms of the prejudice we share and the difficulty for people ‘coming out.’ I want a world where Autistic people – and actually people with mental illness too while I’m at it – don’t feel the need to hide and stay closeted but can be proud and be loved and valued as we are. That’s what I want.

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  3. Lol, yes, it does seem a far cry from where you are now. I think that you accepting, and loving, yourself has to be your crowning glory. It is no small feat. While you shine your beacon, others will heed the call to themselves and their own love. It is only through reading each of your posts that I see any sort of future worth living for. Until I knew of you, I had no idea one could be proud of being autistic. My life to date hasn’t been one others would wish to emulate. But there is hope…and that is fantastic.

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  4. I was formally diagnosed with Aspergers Syndrome in January 2015 (45 years of age), after taking a psychological assessment given to me by my mother (who has a masters degree in psychology). At the end of the assessment, my score was 47 out of a possible 50 points (32 being the minimum for possible Aspergers diagnosis). I then took 2 similar assessments, resulting in scores of 47 and 49 out of 50 (extremely strong possibility of receiving Aspergers diagnosis). I then took this information to my psychiatrist, who, without hesitation, gave me a written Aspergers diagnosis, which I presented to my psychotherapist. Both the doctor and therapist, along with my family members, have noted that I frequently display symptoms of Aspergers (e.g., lack of eye contact, relatively monotone speaking voice, difficulty handling changes in order and in surroundings, speaking at length to the point where I may go off topic and lose my train of thought, difficulty interpreting facial/non-verbal expressions, fascination with a limited number of activities). This has helped to explain what has happened in my life over the last 40+ years, including my fascination with numbers and my 14 years working in financial services, often being credited for my extremely strong attention to detail. It also explains why I often struggle whenever there is a change in environment (e.g., going from financial services to overnight grocery) or a change in activity (e.g., working in a certain aisle even though the original schedule says to work in another aisle). I often need at least 10-15 minutes to adapt to the adjustment before moving forward.

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