Autism Interview #73: Jamie Knight and Lion on Technology, Autonomy, and Safe Environment

Jamie Knight is a developer, writer, public speaker and mountain biker who lives in London. By day he works for the BBC where he is a senior research engineer and spends his time working to make the BBC products usable by the whole audience. Lion is Jamie’s 4-foot plushie who goes everywhere with Jamie and has been working with him for over 10 years! This week Jamie shared his experience as a public speaker, as well as how he has worked with those around him to create a safe environment that encourages autonomy and independence.

You’ve spoken publicly about the benefits of technology for autistic individuals as well as whether or not we are too dependent on technology. What are some important things to consider regarding this dependency?

I didn’t pick the title of that presentation. I was given the question by the organiser of the event and asked to answer it during the presentation. They asked ‘is there a risk of over-reliance on technology’? In the talk I put forward the argument that over-reliance on anything is a risk, with examples of how the risks of technology and in-person support are very similar.

Technology is just a fancy name for a tool. A tool’s purpose is to meet a goal. Inspecting and considering the goals carefully is more impactful than any specific tool.

I then suggested a different question. How can technology and support work together effectively and what should be considered when choosing a particular technology?

The talk started by considering what I use support / tech for, then I talked about the technology I use in various contexts. Finally, I talked about what I consider when I am choosing technology.

In my opinion, good technology should be robust, focused, and mainstream.

The About page of your website says that you focus on “how to enjoy and benefit from the good side of being spaced out.” What does this good side look like for you and what do you mean by “spaced out”?

Spaced out (or derpy) is a few different things. It’s what happens to me when I am tired or deeply focused on something. I tend to be focusing on one thing, slow to respond to other people, or very clumsy.

Being spaced out itself isn’t a bad thing. If I am calm, being spaced out is nice and joyful. Lots of smiles. Lego parts and sensory toys are all things I enjoy lots when I am spaced out. I get most of my good ideas when I am spaced out. It’s a good way to recharge energy.

It’s not all good though. Sometimes I get spaced out when I don’t want to be. That’s much harder to manage. If I get tired at the supermarket, I tend to get a bit spaced out, and that can make it difficult to complete the shop or cross a road safely.

How did you become interested in public speaking and how did you find avenues to do so?

I have been doing public speaking for over 10 years. My first presentations were at tech events call ‘barcamps’ where everyone who attends does a 20-minute presentation. A friend took me along, and I enjoyed it lots. That led to other technical talks over time.

My first autism-related public speaking was via an OT I had when I was a teenager. She asked me to speak to a class she was teaching.

I am passionate about my interests, and a presentation is effectively a structured monologue. It’s probably the easiest speech I have. I find 1 to 1 conversation much simpler.

These days I do lots of public speaking as part of my job. I’m doing around 50 events a year plus a dozen podcasts or videos. I also run digital accessibility workshops for engineers as part of my job (with support from my team!)

Every time I explain something, I learn more about it. It forces me to order and structure my thoughts, which I find a very useful process.

Who is your best ally and why?

Im not sure. I have two. The first is Lion, the second is ‘the herders’.

Lion is my sidekick. A big 4-foot plushie who goes everywhere with me and has for many years.

He’s an ally because he is so consistent. He’s physically reassuring and grounding. I just feel happier with Lion around.

He’s also accidentally come to help me in another way too.  He helps me similarly to how a white stick helps a blind person. Having Lion in my arms communicates to people that I am different. More often than not, it means people make an effort to understand me rather than judge me.

At events I am perfectly comfortable to bounce up to a group of strangers with Lion and introduce myself by explaining the Lion.

The second ally is my friends. We have an online chat room called ‘herders’. They all live nearby and are professionals in similar fields to me.

They are all older than me (5-12 years!) but they are my peers. They help me out with bits of support, they also help me manage my paid support and other bits of my life. They are an awesome group of people, and they provide a stable backbone of support and guidance.

What mistakes do neurotypical autism advocates make?

Many NTs seems to mix up cause and effect.

Many NT advocates think that autism causes behaviours.

In my experience, that’s backwards. Badly-designed environments causes barriers, and barriers cause behaviours.

Badly designed environments disable everyone. Because most environments don’t consider my needs, I encounter more design errors than other people do. Remove the environmental barriers, and I thrive.

I live with autonomy, hold down a good job, and have fun adventures because we have fixed the design mistakes in the environments around me.

I think good autism advocacy focuses on removing barriers in the environment. Barriers may be built things, attitudes, expectations or assumptions.

The good news is environmental barriers are much easier to change than people, and every small change adds up.

What advice or resources might you offer to parents of autistic teenagers or young adults who are trying to help their children live independently?

I can’t really offer advice. I am one autistic person. To offer advice I’d need to know more about the context of the person asking.

Instead, I’ll offer some details about how I approach my life. Perhaps there’s something useful there.

In my life, independence (being able to do something alone) isn’t anywhere near as important as autonomy (being able to make my own decisions).

It’s like I am the captain of a ship. I decide the destination, but I need help steering or keeping the engines running.

I don’t aim to be independent in my life. It’s a huge cost for little payoff. There’s little point in me spending my limited energy struggling to cook, when I could use that energy to hold down a job.

I may be more independent one day, but right now I’m not ready. In the areas where I am independent, it came via autonomy.

There are a few other areas I focus on too.

I focus on barriers in the environment rather than my reaction to them. (This is known as the social model of disability). Barriers are a waste of energy.

I try to use the limited energy I have as best I can. I use my energy to build on my strengths, and we try to work around my weaknesses.

When I do come across a weakness or issue, I try not to mask or ‘cope’. While hiding issues behind an exhausting mask is tempting (and often the goal of therapies), it wasn’t worth it. Long term it just results in exhaustion and gave me brittle mental health. If I mask issues, I lose the chance to make something better, like embracing my autistic identity.

More often than not I have found that embracing my autistic identity and solving issues is much simpler than masking them for a much smaller long-term cost. After I’ve solved an issue, I don’t need to waste effort ‘coping’.

It’s easier to do without masking if I have a genuinely safe environment in my life which I can retreat too. For me, it’s my bedroom. I have a custom-made bed which feels safe. A safe environment makes failing safe.

Things will go wrong, meltdowns will happen, etc. Design the environment so recovering from failure is as easy as possible. If failures are easy to recover from, then it’s easier to take risks and experiment.

Finally, I don’t like variation and change. Some people would hate having the same food everyday; I think it’s brilliant. So I treat variation as a resource to be budgeted, and I don’t waste it on things which don’t matter to me.

I’ve written about this stuff on my blog other places. There are lots of autistic people writing about these concepts.

Finally if you haven’t already, read the book Neurotribes by Steve Silverman. His take on autism is one of the best.

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