Understanding Autism

This article is from Action Network in the UK. Kev Leitch was interviewed:

‘My daughter, Megan, was three when she was diagnosed with autism. She was classified as ‘low functioning’ or ‘Kanner’s’ or‘classic’ autism. At the time we were devastated. We knew nothing about autism and all of a sudden we had to become experts and yet at first we seemed frozen in what we came to recognise as grief.

There are five stages of grieving. We traversed them all. We went through stage one quickly. Denial is a way of trying to stay in blissful ignorance. But we quickly accepted that this wasn’t good enough. It was real,it was happening.Anger was next. We lashed out, trying to find something to blame. We settled on vaccines, mainly as Megan did have an atypical reaction to her DTP. It was easy to make that connection. And once we’d settled on vaccines we went straight to stage three. Bargaining is an easy trap to fall into once you agree to blame an external‘something’. Please God, if you cure my daughter then I’ll never haveanother vaccine given to her again. Take away her autism and I’ll convert to Christianity. But nothing changes and it’s easy to fall into stage four. Depression is the worst stage. You worry about money, about health, about family and it never seems to stop eating at you. Every day. Every
look you get from your boss when you come in late. It all contributes. And then, it lessens. You start to look at things afresh. Or we did anyway.We took a deliberate decision to stop fighting autism and learn about it from people who were like our daughter – autistic. What we found amazed us.

One of the first pieces of writing I came across was that of Jim Sinclair, an autistic man. He’d written an outstanding essay entitled ‘Don’t Mourn For Us’. In this essay, Sinclair says: “Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize.”

Grief

And then he goes on to say: “But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.”

And it hit me that that’s exactly what I’d been doing. I’d spent so long fighting and bargaining that I’d forgotten about the needs of my little girl. From that point on, our outlook changed. We relaxed and read as much as we could from autistic adults so we could try and see the things that might matter to our daughter about her life rather than what might matter to us about her life.

And we also started to look objectively and rigorously at the science of autism. We found out how wrong we were about vaccines for example and I discovered a whole subsection of quackery on the internet made up of people claiming to be doctors offering bizarre, untested therapies for hundreds, sometimes thousands of pounds.

As Megan grew and we became more and more relaxed, she became more and more relaxed too. Soon she was exhibiting learnt skills such as using a computer fluently. She did this as we become increasingly prepared to come into her world. If she was rocking in front of the TV, so would we. If she was singing at the top of her voice in Sainsbury’s then so did we. Suddenly, we weren’t fighting; we were sharing and living as a family. I eventually discovered that this approach had a name and a concept: Neurodiversity. This is the idea that autistic people do not need a cure but
do deserve respect and recognition for who they are.

This is not the same as doing nothing. Megan still undergoes speech and language therapy for example but it means not ‘fighting autism’, rather accepting it and working with your autistic child in a way that they get the most out of. It’s essentially meeting your child halfway.

Megan at age six is not the same child as Megan at age three. She’s more confident, happier, more settled and progression is marked. Thankfully, we were able to listen to her in a way she felt comfortable with.’

Kevin Leitch’s company Left Brain/Right Brain is
about two things – autism and web design.
Sometimes the two combine but mostly they’re
distinct. Here in his own words Kevin, as father
of autistic daughter Megan, candidly reveals his
belief that autism is not a life sentence,
worse than death or an epidemic.
▲ Megan is now a confident little girl.

Thanks, Kev.