23 December 2016

Why am I an autistic ally?

I have a few autistic extended family members. One of my cousins in particular had such a negative view of himself that when my daughter (now 18) came along and was so obviously autistic, I was determined that she was never going to feel the way he did.

I raised her to be proud of who she is. I mean, why would I want anything less for her? What was the alternative, self-hatred? Not on my watch! I saw it as my job, regardless of any disabilities/barriers, to prepare her for adult life. And my way of measuring this was always that one day, she would be confident about venturing out into the world, and that's when I would have achieved my primary parenting goal - to raise a confident independently functioning adult.

To me it was obvious that the best way to achieve this was going to be to focus on her strengths, rather than her weaknesses.

I guess the understanding of neurodiversity came naturally to me. Before I even knew words like neurodiversity, I explained to her that everyone is born with their own unique set of interests, strengths and weaknesses. I explained that in some skill areas people needed extra lessons in order to keep up with their peers or achieve greatness if that was their goal (eg: piano lessons, maths tutoring, social skills groups). I told her how she was so incredibly smart, and how as far as I could tell so far, that was an area of giftedness.

From the age of three, her area of deep interest was Ancient Rome. It was incredible how much she knew about Ancient Rome, everything from facts about sewerage systems and architecture, to the intricacies of political marriages. All before the age of five. Who was I to question or suppress something so wonderful? From about the age of eight, she added other topics to her pool of interests, but Ancient Rome has always remained like an old friend. Those are the books we will never discard.

She also loved to come up with amazing stories - when she was a toddler I would sit and type as she spoke, and we would send the stories out to people across the world for feedback. As a teenager she became a star debater, wowing people at the inter-school debating competitions held in the very intimidating Legislative Assembly. By the age of 16 she had already written (typed) half a sci-fi novel about artificial intelligence and consciousness transfer. She now spends a lot of time writing online role-playing stories.

Why shouldn't she be proud of this? How is it conceivable that it could be good or wise to give her a negative view of this depth of skill and intelligence in her areas of expertise? What's wrong with fostering a sense of understanding and awareness of her own unique set of strengths and weaknesses, and working from there?

I also pointed out that we don't have to work on all areas of perceived weakness - some skill areas really didn't matter in the scheme of life. Exposing kids to lots of opportunities to discover interests is a great plan, but forcing them to work hard at an unnecessary skill in an area of disinterest is a pointless waste of everyone's energy.

People grow up and generally end up working in their area of expertise, so this idea of "well-rounded" children is kind of ridiculous. It's an expectation we don't even hold up to adults, so how are kids supposed to achieve it? In my view, a person who excels in all areas is actually divergent (gifted), and everyone else should respect that, but not try to become that.

I could see she struggled with energy levels because of her anxiety and sensory processing problems, so I refused to do too many co-curricular things - over the years there was a bit of speech therapy, a little bit of occupational therapy, a social skills group where kids learned to share, and how to line up, and what personal space is about. There was swimming (which she LOVED), and later a teen confidence group with a local psychologist who does amazing, supportive, strengths-based work. When she was 13 she attended a special physio course to learn to ride her bicycle (it was awesome and she had a lot of fun). In her mid-teens she decided she wanted to learn piano, so there was that too.

I didn't let anyone try to suppress who she was, although that was a hard one, as it seemed to be the mainstream way of dealing with autistic kids - to work towards them being "indistinguishable from their peers". It drove me crazy that people had such a skewed perception of what inclusion means for autistic kids. Inclusion does NOT mean making autistic children mask themselves and forcing them to conform to the social needs of their mainstream peers.

I didn't really understand stimming early on, but I could see it seemed to serve a purpose, and it wasn't hurting anyone, so I left it alone. She still flaps at age 18, and for her it's an expression of utter joy, so I rejoice when I see her doing it!

Pretty early on I realised that hand writing was a big challenge for her, and that it was getting in the way of her producing anything in school. Given what I knew about her ability to come up with great stories, I advocated for technology to help her. It was a long series of battles til I finally won that war in the fifth grade, by providing her with a laptop myself, and getting the school principal to back me up. People continued on and on insisting that she should learn to write, first and foremost. But what they were missing year after year, was that she was so stressed out trying to write that she was producing nothing, and lagging further and further behind. My thought was that in this era of technology, making handwriting the top priority, especially when the individual clearly has a handwriting disability, is just plain silly. (In case you're wondering how I won over the principal - I described it to the school as trying to make the wheel chair bound kid with cerebral palsy walk properly, before she would be allowed to participate in anything else at school. Clearly that would be cruel and ridiculous, and the handwriting was no different.)

During fourth grade she somehow got glandular fever (mono), which developed into severe chronic fatigue. She missed about half of that year of school.

By the time she got to the end of eighth grade, I could see my daughter had some significant gaps in her early childhood learning that were affecting her ability to take on higher level learning. So I decided to home school her to help her catch up and get her ready for years 11 and 12, and for university studies. At home, it was amazing to see her finally relax into learning, and I wished I had done it earlier in her life and avoided all the torment she had been through. We focused on finding enjoyable ways for her to learn a lot of material quickly, and she loved every second of it. She was a learning sponge!

What you don't see much of above is me lamenting how hard it was, how disabled she is, or wallowing in whatever other negative rhetoric. It doesn't mean those troubles, woes, difficulties, battles, tears, meltdowns etc didn't happen, and it doesn't mean they weren't immense and seemingly insurmountable at times. It doesn't mean that you can assume that we have had an easy run of it, or that my daughter is too "high functioning" to be compared to your child's difficulties.

What it does mean is that working from a strengths-based position removes those negative moments from the area of focus. And when those moments aren't the focus, the mind and heart are freed up to focus on the good stuff.

If you're going to spend a large proportion of your adult life on child-rearing, doesn't it sound like more fun to focus on the good stuff?

To me, that's what neurodiversity is largely about. Focusing on the Good Stuff. Accepting that all human beings have their unique areas of strength and weakness, and choosing to focus on the strengths while working only on the weaknesses that are essential for survival. Not expecting everyone to fit some unattainable model of excellence in all areas; being proud of who we are regardless of what neurology we are born with; enjoying our kids; showing empathy towards autistic people instead of forcing them to do things the mainstream way; enjoying the wonders of what diversity brings to the table in innovation, music, art, and so on.

Why am I an autistic ally?

It's really simple: I am an autistic ally because I care about how autistic people are treated. I want less trauma in the childhoods of autistics, and more confidence and success in adulthood. I am also an autistic ally because I care about the wide divisions that have grown within the autism community, and I would like to see us all come back together and work towards common advocacy goals that are good for everyone. I'm an autistic ally because I have ideals and dreams for a better future for all concerned.

Mostly, I am an autistic ally because I think autistics are awesome, and I want the rest of the world to think so too.

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