My daughter gave me a Mother’s Day card with one of those lists – 5 Things I Love About Mum. One of her things was ”She got me assessed for autism”.
If there is anything I can contribute to the voices in April for ’Autism Awareness Month’, it would be this. A diagnosis does not have to pathologise our children. It can be a gift.
Every other week, it seems, I read an article about adult diagnosis.
‘There’s a sense of relief about it and a sense of mourning. Not because I don’t want to be who I am, it’s that I wish I’d known sooner so I could have understood exactly why things were rolling the way they were rolling.’ (Melanie Sykes)
‘It’s been a huge relief, it’s really helped me understand why I am the way I am, why I’ve struggled throughout my whole life.’ (Christine McGuinness)
‘I wish more than anything that I had known about my ASD when I was a kid, just so I could have learned how to look after my own distress, instead of assuming my pain was normal and deserved.’ (Hannah Gadsby)
A diagnosis does not have to pathologise. It can be a gift.
Before we ever attended an assessment or appointment I drip-fed awareness about neurodiversity in our home. We talked casually about autism and ADHD and all brains being beautiful. We talked about gifts and challenges, differences in how we think and experience the world, misunderstandings that can occur. It was casual, but intentional. Look at Greta. Dave Pilkey. Friends. People in our communities.
Even if you have the most neurotypical family in the world, this is something you can do. Talk about neurodiversity, mention that people are autistic (not as their defining trait, but an interesting one), model an affirming way to talk about it, casually, but regularly.
You may need to do a bit of work first. I’m still learning, myself. Humility and curiosity are great places to start. Let’s presume we don’t know what we’re talking about. Most of us have picked up misinformation and misconceptions and a negative narrative. We can be patronising and damaging with our good intentions.
The Maori word for autism is Takiwatanga, it means ‘in his/her own time and space.’ I think this is a beautiful way of conveying that autism is a particular internal experience that relates to how some people experience and understand the world. It invites us to make room.
To make room for the many ways there are to be in the world.
To make room for the many ways there are to think.
To make room for the many ways there are to connect with and understand each other.
There is much to celebrate. And there is much we miss out on if our definitions of connection and empathy and being social are too narrow. Spend one evening around our dinner table and you could probably tick a few boxes on an autism check-list about our daughter, but I guarantee you, you will have laughed and learnt something new, you’ll have a story to tell when you get home and you’ll feel closer to our whole family as a result of this girl.
We make room, as well, for sensitivities and needs. We accommodate. We realise, perhaps, that many of these are triggered by our insistence that everyone learn to fit neurotypical ‘time and space’, by our fast-paced culture, by our places of work and education and worship which are not designed for people who experience their environments differently.
On the way home from her cousin’s 18th birthday celebrations, my daughter asked if her cousin was autistc. During the day people had gathered to say some words about his character, affirming the good we see in him. When I asked what made her wonder if her cousin was autistic, she answered that it was the things people said about him. There were some recurring themes about his individuality, his authenticity, admiration voiced about his unique way of being and the courage it can take, to be yourself.
My daughter heard that and wondered: Autism?
It’s April. Let’s honour honesty, detail, big emotions, inquisitive minds, special interests and sensory preferences. Let’s notice when the words we say and the environment we provide causes overwhelm in others. Here’s to more than awareness. Here’s to the kind of acceptance that provides space and safety nets, that takes time and effort, that is beautiful and enriching, that makes room for us all.
Links & Resources
The best place to learn about being autistic, is from autistic people. Jude Morrow is an autistic author, speaker and mentor from Northern Ireland. This TED Talk is a good introduction. His most recent book is called ‘Loving Your Place on the Spectrum‘. Following Jude Morrow will lead you to more autistic voices, of which there are many.
I love this comic strip explanation of how varied the spectrum is.
Uniquely Human The Podcast seeks to expand the conversation on autism and neurodiveristy by amplifying the voices of autistic individuals and thought leaders. It is hosted by autistic author Dave Finch and Dr Barry Prizant (author of ‘Uniquely Human – A Different Way of Seeing Autism‘). It is brilliant.
I am an Aspie Girl by Danuta Bulhak-Paterson (recommended for girls aged 5-11), helps girls ‘to understand their diagnosis, recognise their unique strengths and celebrate their differences, and find ways of coping with difficulties.’ Don’t be put off by the fact it is a picture book and says ‘for young girls’ on the cover – it communicates a lot of wisdom beautifully.