Hope and Shame
I spent an incredible three days at the Autism Europe International Congress. As I flew home from Dublin, I started to write this post in my head while reflecting on what I had learnt from the experience.
When the unfounded claims that paracetamol is linked to autism spectrum disorder came out in late September, it suddenly made this blog more important.
For the past five years, I have been learning to better the life of my son and others in the autism community. This led me to finally being diagnosed with ADHD (you can read my post about ADHD and Me). I already knew that the more you learn, the stronger you become. What I didn’t understand was that you also realise how much more you need to know.
Let’s start with shame
Let’s start with shame, a word that one of the keynote speakers, Dr Mary Doherty, spoke about in detail. Autistic people are shamed for being autistic. Parents of autistic children feel vicarious shame (I know this one all too well). Maybe this is why so many people mask?
Dr Doherty talked about that shame comes from childhood messages, from your family, your school and your peers. From social reactions, bullying and workplace conflict. Her view is that shame is being a deeply painful emotion which impacts identity and makes you view yourself as defective. It’s time to move from shame as the leading emotion!!!
Shame needs three things to grow exponentially: secrecy, silence and judgment.
Dr Kylie Hinde delivered a complete eye-opener for me. How parents of autistic children suffer from PTSD. I have seen many parents in the community, and I had never thought of this as a possibility.
I don’t want you to think the Congress was all around shame, far from it. There is a great deal of hope for the autistic world.
There is hope
This came in the form of some incredible research and talks from across the world. Consider, Maja Toudal, who talks about energy accounting as a way of decreasing stress and building understanding for people with autism. This goes beyond spoon theory in many interesting ways. I have her book to finish reading so I can discover more about this powerful tool to use in and out of work. She is also a fan of pink shoes…
Another ray of hope was provided by seeing the heads of the Bank of Ireland, Salesforce, the Post Office, and Insurance Ireland talk about how they can better support their ND customers and staff. It’s a work in progress but getting this kind of thing started is often the hardest part. Meanwhile in the UK, the Lilac Centre is building hope for the next generation of neurodivergent and disabled entrepreneurs.
When it comes to shame, understanding is a prerequisite for change.
Liz Pellicano delivered a compelling session on autistic autonomy. She eloquently explained the paradigm of so much focus on the deficits and deviation, rather than on the strengths and possibilities. She challenged us all to think about correcting this – I am all in.
I liked her comments about how we can create a flourishing life! I am also all in on this. Let us thrive. Being autonomous is about getting to make important choices for ourselves. Finally, I appreciated her recognition, from her perspective as a research doctor, that lived experience and research experience need to work hand in hand.
Dr Maya Aldin and Dr Jiedi Lei’s fascinating talk on improving communication for autistic people sparked a great deal of conversation. Thinking about it from a neuro-affirming approach, it is about societal barriers that are disabling, not a defect in people. It’s about difference, not deficiency. It made me think about adaptations and how we can all do better – the change of mindset is the hope.
Changing mindsets
The autistic world has many different challenges. Let’s start with ignorance, lack of understanding, judgment and shame. That’s before we start talking about the individual issues that many in the community face. There are lots of amazing people doing research, driving change, educating, and looking for ways to decrease shame and to make life better for autistic people. This for me is the hope that I will take away from my trip to the European Autism Congress in Dublin (along with a nice bottle off Irish Whiskey).
Shame dies when spoken about in safe places.