When I was diagnosed with Asperger’s syndrome two years ago I felt relieved, jubilant, and sad all at the same time.
Relieved, because I now knew myself, I could understand so much more about myself. There were a lot of ‘ahh!’ moments to look back on!
Jubilant, because I know knew I wasn’t unreasonable or a complete misfit; I was part of a neurodiverse community that helped me be proud of my autistic identity.
Sad, for all the missed opportunities I had had, all the misunderstandings and meltdowns that are — in short — terrifying when you do not understand why you are going through them.
Most of all I wanted to help other parents, as I am a mother to neurodiverse children, including two with complex needs, and felt I could offer help to others.
I started a Facebook group with a large volume of autistics in it (with the help of a friend), to support and educate parents and carers and create a safety ‘net’ of sorts.
If these parents, I thought, could meet adult autistics and learn from us, it would help them. For them to know and realise that their children are capable of so much. That if their child uses non verbal communication it’s not the end of the world — but simply an alternative to the typical — is extremely important to a worried parent of a newly diagnosed child.
The group is incredible and I’m proud of it. Through it I became aware of another side of the larger autism community: the side that’s being exploited and hurt by corporations intent on offering ‘cures’ for autism in the most harmful ways possible, as if autism is an illness or disease.
I saw parents desperate to help their children, parents who were being convinced there were no
other alternatives but these harmful treatments, that they had to
‘normalise’ their child through compliance therapy, that their child would
never become anything and that the only way for their child to ‘fit in’
was to be ‘healed.’
I began campaigning in earnest here in the UK to expose both the quackery and the mindset of the exploited. I spoke out at London Live, BBC, Ben TV, The Independent, and The Times.
I came to the conclusion that parents do
want to help their children, and that their fear comes from not knowing, not
understanding how to cope or aid someone they love.
For a concerned carer or parent in that situation to be told, “Right, I understand now, what can I do, how can I help?” is a massive thing.
To help more, I began writing blogs. I have a website called autisticatedalmayne.com with loads of articles on it. I am published on The Mighty, Autism Daily Newscast, Geek Club Books, Autistic Spectrum Digest, and Special Needs Jungle.
But I had so much more to say, so much more to give.
I had often heard autistic people say to non-autistic people “It’s an autism thing, you wouldn’t understand.” So let’s help them understand, I thought. I wrote a book.
Autistic children and indeed adults do not need to ‘fit in’; we need
help, encouragement and inclusion. We do not need harmful treatments or
If my book can dispel myths, give teachers and parents the tools to step over to our autistic point of view, to see how we see the world, feel the world even — then I’ve done what I set out to do.