Wednesday, January 23, 2013

Preoccupation with another layer of autism stigma: Crap…this goes deep!

Preoccupation with another layer of autism stigma: Crap…this goes deep!

by Leah Kelley,
July 19th 2012

I have been preoccupied with the ideas of self-advocacy lately. I am so motivated to delve into this – to understand more about the developmental components and the building bricks that will support the skills of advocacy.  I know… I KNOWspecial interest much?? The line between my shadow traits and the traits of those on the spectrum can be surprisingly thin at times. Actually though… that is what makes me good at what I do. I get social (well, most of the time) and I get autism (again, most of the time)… because even though I am NT, I think differently… and I can understand and explain both perspectives. That is what my work here is about: my efforts are to build bridges – not walls – because that is what leads to understanding, and our world needs more of that.

I am motivated to understand the developmental progression of self-advocacy because I want H to be able to have the self-understanding to express what he needs from others. This is complicated and multifaceted – and I am in the midst of crafting a more in-depth post on the topic.

Part of this process, however, is supporting H’s ability to embrace himself as being autistic. So I have been looking for opportunities to build his positive view of himself that includes being autistic/having autism.

A blogger friend of mine tweeted this… and I absolutely love it:

It says so much on so many levels! Immediately I asked if it was OK with him (AspieKid) if I could use his phrase on a shirt for H. It is such a fabulous play on words and meaning on multiple levels and such a positive message of empowerment for my child.

A few days later…

So… on our way to the pediatrician this morning …we embarked on our conversation. I just love car talks. Just like walking side by side is a wonderful way to connect with kids, riding in the car also offers huge opportunities for that easy lateral conversation – as opposed to face-to-face heavy eye-contact interaction. This is effective for my child with autism – but it has also been an amazing approach for my neurotypical daughter. And… too… upon reflection, I suppose H is belted in and trapped when we are in the car – so there is little opportunity for avoidance-behaviours and fewer competing distractions!

H and I discussed special interests and inventoried many of his. We talked about the value of these intense interests and how this sometimes becomes a connection to what people do as an occupation when they grow up. Then we explored the ideas and connections between occupational therapy, occupation, pre-ocupation, and preoccupied. I wanted him to understand the multiple layers of AspieKid’s wonderful line, and share my perspective about how it  shines light on one of his traits in a positive way.

Then – because I thought maybe he just didn’t want an embarrassing mom’s-gone-all-artsy-again kind of shirt, I explained that we could have the message put on a shirt professionally.

The ground work done, I again queried: “So now that you understand the multiple meaning of the line – and the positive message it sends – and you know I don’t have to be the one to make it… now, how do you feel about wearing a t-shirt like that?”

“I would maybe wear it to a conference… but not just out there,” H indicated outside the car.

“Can you explain to me?”

“No,” H shot out a rather abrupt response.

“I am interested in your thinking – I want to understand…”




Finally, “Well some people who think autism is bad might stare at me – I don’t want to have people who think I am a tragedy staring at me.”

(OMG – That makes so much sense – CRAP!!!)

H is comfortable in self-identifying as autistic/having autism around adults who understand about autism. At Arizona TASH he was exuding joy and full of pride over his autistic traits as a part of his entire being.

I hadn’t expected this reaction and the differentiation between those who accepted him and the need to hide being autistic if he was uncertain of the response. I was surprised at the depth of H’s thinking – but perhaps I should be more surprised at my lack of insight.

“So if you are with people who know you and understand about autism – you feel comfortable sharing that you have autism/are autistic… but if there are people you don’t know you don’t want them to look at you and make judgments about you?”


I then talked with H about what people get to see of autism. Honestly though, I am just coming to have more insight around this myself, and it is for a large part through my interactions with Laura Nagle that my thinking is being shaped. Here’s the thing… if the only time we share that someone has autism – is when they are having a melt-down or struggling with something – then people only get to see the challenges.

I reminded H of the time we spent with Laura Nagle, and how she sometimes flaps when she is very happy or excited.

“Ya… that’s just her stim…”

“You are right buddy, but did you notice that Laura doesn’t hide that?  And sometimes when someone looks at her she acknowledges them and explains that ‘it’s a PDA: that’s a Public Display of Autism!’ and then she just caries on. She also shares with all sorts of people, like cashiers at a store, that she has autism. She says that people need to see and encounter those with autism out and about and living their lives.

If the only time people share that they or their child has autism/is autistic is when the are experiencing a challenge then maybe we are not giving others a chance to have a more full or well-rounded view of the experience of being autistic.”

H responded, “I don’t have melt-downs…”

“No… but you used to. You still have times when you get overwhelmed though – but now you have words and strategies to help you… and we are better at understanding too…”

It upsets and saddens me that my child feels so judged… and his reaction is still based in shame. The framing of autism as an epidemic and a tragedy is insidious and pervasive in its attack upon the well-being and self-image of my child… and maybe yours. I am also haunted by the irony that as I am teaching my child to use his skills to understand the perspective and experience of others – it opens him to unfortunate realization that those less understanding and accepting of his experience may judge him harshly.

I am not trying to teach my child that autism is all rainbows and sunshine and joy. Having autism makes life difficult for my child – EVERY DAY… but autism is a difference that also gifts my child some things… like an incredible capacity within his areas of interest. Of course, H is not solely defined by autism… but it is a difference to his very core – and I want him to feel pride in all parts of himself.

We are working to give H the skills to advocate for himself and use his strengths to the best of his ability: cognitive strategies to better negotiate the social world, self-understanding, self-regulation skills, and more. But I think we still have a long way to go to build understanding for those who experience the world differently – and part of the equation may just include a careful contemplation of the value of sharing, like Laura does, the way that autism touches our daily lives in those moments when it is not obvious.

There is so much to think about here…

This conversation with my wonderful boy may be at its end for this day… but I have a feeling we are not yet done…


Thank you  to my friend AspieKid for letting me share his wonderful line and  bits of our twitter conversations. I encourage you to check out his well-written and insightful blog when you get a chance: AspieKid


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