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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Saturday, September 23, 2006

 

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.

11 Comments:

Blogger Mom26children said...

I second that, Thanks Kevin...now hopefully you can show others that life with autism is possible. These children can grow up to be thriving adults in any community.

8:50 AM  
Blogger Fore Sam said...

This comment has been removed by a blog administrator.

9:19 AM  
Blogger Joseph said...

Yeah, that was a great article by Kev.

12:15 PM  
Anonymous Camille said...

This link goes to information on the magazine that this article was printed in.

It's a fantastic article, Thanks, Estee for putting the text here.

4:04 PM  
Blogger Fore Sam said...

This comment has been removed by a blog administrator.

4:44 PM  
Blogger notmercury said...

Great interview Kevin. Thanks Estee

5:26 PM  
Blogger r.b. said...

My story, too...except Ben was in 5th grade before I woke up to loving him unconditionally, strangely around the same time I gave up the mercury idea.

Wake up before your children are gone, people.

8:14 AM  
Blogger abfh said...

Wonderful article, great job by Kev getting the message out! Thanks for posting it, Estee!

9:15 AM  
Blogger Mum is Thinking said...

That's a great article, Estee, thanks for sharing it with us.

I love this part:

"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.’"

I think a lot of us see this...our children change so much as they grow; learning how to engage with them appropriately rather than trying to 'extinguish' autism can make a huge difference for their progress as well as easing the stress we feel as parents.

Don't feel alone, Rose, we were 'late bloomers' too :-)

9:32 AM  
Anonymous mike stanton said...

Well done, Kev. We need more articles like this.

11:53 AM  
Blogger Ed said...

Thankyou to both Kevin Leith and Estee Klar,
Because of my difficulty in reading and navigating my way through blogs about autism, I didnt even know who this Kevin was. Sorry.
The point is that this post made it easier for me to understand something that is very important to me. I can see that Kevin really cares about his child.
While I blog as a person who descibes where they are on their path of learning and tries to show how they are learning from their mistakes, I also learn best from others who do the same.
However, parents who care about their kids are important to my future and everyones future. I am encouraged to read about parents like Kevin and I really appreciate it when people make things easier for me to understand.
Thanks, Ed

11:04 AM  

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