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The personal site of Jamie Knight, a slightly autistic web developer, speaker and mountain biker who is never seen far from his plush sidekick Lion. View the Archive

Topics: Autism Development

Building friendship online for autistic teenagers.

I saw a twitter discussion today which asked:

“What’s the best way to help #autistic teens develop good friendships?” (Source: @reachoutASC)

I had a think and here is my response.

Find online forums relating to special interests then spend some time supporting the individual to write an introduction and contribute.

What is a forum.

Online forums are also known as discussion boards. When I was a teenager I joined one called Boagworld forum about my big obsession (web design and development) and it worked really well for me.

I think a forum works well because:

What about safety?

Safety online is never perfect. But with a few techniques it can be manageable.

For younger teenagers, they should not be online unsupervised. This is even more important for those who are naive or vulnerable.

For older and more able users, support is required.

I would suggest looking for a profession forum relating to a special interest. These can often be found in Magazines.

I would then suggest the young person is supported to write an introductory post to introduce themselves.

In my opinion, for a professional forum disclosing autism is a sensible thing to do. In my experience (10+ years) professional forums are very likely to welcome a knowledgable new member regardless of the autism. By knowing from the start, you create an environment where you can explain needs and hopefully also raise some awareness along the way.

It’s also sensible to follow the transitional ‘cyber’ safety rules:

It won’t always be smooth sailing. I use to get upset on the forum often. But that was part of the learning process. It had huge value.

Outcomes.

I met most of my friends online via forums. My friends also provide a great deal of support for me, so the web was instrumental in my life and my journey to independence.

A friend i met online 10 years ago is currently living with me providing support. So while the return may not be immediate it can be huge.

Finally, interaction on the forums led to me attending events. When i attended events, everyone knew me and that made it much easier. People could focus on my skills not my needs.

Attending events became invitations to speak at events. Via a whirlwind of awesome involving Apple, Channel 4 and the BBC that led to my current career.

I didn’t interact with my ‘age peers’. I still don’t. I interact with my actual peers, my age is unimportant.

If you want to try this, let me know and I would be happy to help identify forums and the like.

Published: 31 July 2015 | Categories: Permalink

Using defaults to manage anxiety

A few weeks ago I gave a talk at Digital Croydon called ‘The Developer Mindset’. The talk details some of the engineering principles I have adopted for my day to day life as part of managing the transition towards independence.

The talk discuses a few things such as spoons and avoiding burnout. But I have written about that before. So for this post, I want to focus on a different topic. This post is all about ‘defaults’.

.h3 Default all the things.

I have a timetable and I like to follow it. I don’t follow it perfectly unless I am specifically quite anxious and seeking structure.

My timetable provides me with a default. I can choose to follow the default or go with something else.

Knowing the default is there gives me the structure I need to reduce the anxiety. While also giving me some flexibility.

For example, I can choose to avoid a shower in the morning because I had a shower the night before.

Or I can choose to go for something different for dinner knowing that the default is in the freezer waiting for me.

It’s a simple concept but I have found it to be very useful.

To put a development spin on it; effectively I have just decided on some sensible defaults for my ‘life’ API.

The default covers me for when I don’t know what to do or don’t have the energy or interest to make a comfortable decision.

In the past, departing from my timetable gave me a sense of falling into chaos and with it a surge in anxiety.

These days, I choose to treat my timetable as a defaults mechanism. It’s there when I need it or want it. But it’s just the default, if I think I can do better I am free to do so.

Published: 29 July 2015 | Categories: Permalink

Derp, food, clothing, travel and support.

Last month I wrote about my timetable and sensory diet. This post is a bit of an update about some of the things we have learnt.

The key take away is that I am much much happier and less anxious. Here are some of the changes we have made.

Embrace the Derp.

Derp is what we call the rather spaced out unfocused headspace I get into when i am overloaded or tired. Forms of Derp vary. It varies in intensity and mood.

There is being a little derpy (a bit spaced out, less speech, clumsy) and very derpy (no speech, extremely spaced out, probably hiding under something or in bed with lion)

Then there is happy derp (very bouncy, very excitable, sometimes very loud!) and bad derp (very anxious, crushing chest feeling, can turn into a panic attack).

My friends sometime refer to my happy derp as being a bit like a 5 year old because my sense of danger is a bit poop. happy derp is fine but often results in lots of small injuries (burns!) and getting a bit run over.

Since we adopted the timetable we have seen an increase in the derp. I think this is because I am muuuch less anxious. Previously my anxiety scale was from 0 – 10. But via the timetable i now have a new anxiety level of -5 :)

I am really happy to swap much less daily variation and more derp for being less anxious and much happier.

My friends are also saying they welcome the change. Because while I am more derpy. It is generally happy derp. Before I got very deep derp more often and it was bad derp. Light happy derp is much nicer for everyone :)

Derp isn’t new. What’s new is i am trying my best to not feel so bad about it. I do struggle with feeling guilty when I get derpy. But for now I am trying to put that aside while I look to find ways to get stable.

Food

I have a base daily diet which is the same every day. For breakfast I eat (gluten free) cereal. For lunch bits of chicken on sticks and a banana and for dinner potato waffles and salad.

I eat that every day. I then add other things I like as and when. I get support to make sure I can always have those three meals. For example, if I not able, someone else makes sure that lunch is in the fridge for me.

Finally, at the moment I don’t cook the waffles (someone else does!) that bit will change in the future. The focus right now is still finding stability.

This has been a key driver of my reduced anxiety :)

I really really like knowing exactly what I am eating.

Laundry.

I preselect my clothing for a week at a time. This means I don’t make any clothing decisions day to day. Everyday has preselected underwear and a t-shirt. Jeans are a special case as I only wear a single pair (I don’t go out if they are in the wash)

This has also helped reduce my anxiety. It’s one less decision. I know what I am wearing and i know where it is. Once I get out of the shower I know what to do. Much happier.

Travel.

I have learnt something important. There a difference between what’s possible and what is comfortable. I had become very very good at managing my discomfort because I believed that was the correct thing to do.

I need to credit this lesson to my line manager at the BBC. I didn’t accept it at first but he turned out to be dead right.

These days I am trying a period of just making changes to avoid discomfort.

So far its working out great. Often considerably extending the amount of things I can do.

For example, with travel I am getting more support. On Friday i traveled to a friends. It’s a long trip all the way across london and I have always hated it. However these days it’s gone from ‘hard and uncomfortable’ to ‘stressful / really horrible / borderline dangerous’.

So we have redesigned the way I do the trip.

It’s now a single train. I get a taxi to the station at one end. (£4, only £1.50 more than the bus!) and my friend picks me up at the other.

That’s how i traveled this weekend and it’s been great. This weekend I did lots of things and I think i was able to do so many things because I was less stressed traveling.

Another thing, unlike normally when I head home from this friends house. I feel far less anxious about going home.

Support.

A large part of my increase in happyness is due to much more support in my life.

I use to get as much support as was possible to be provided by the people around me (who did a damn good job!)

I now get about as much support as I need.

Mostly it’s simple things. We very carefully limit the amount of time I spend alone at home. I don’t feel safe in my home and I don’t like being there. We’re working on fixing that, but for now we just minimise exposure.

As I mentioned before, a friend lives with me now to be around in the evenings. Other friends also visit.

The final step is we’re now getting extra help from paid support people. We have just started meeting with someone who will hopefully be able to provide another option in the future.

This is very exciting for me. Because with the paid support I don’t have to endure the anxiety / panic attacks because everyone is busy. It takes the pressure of my friends and generally makes everyone happier

Finding the money is a challenge. But I think it is money well spent.

On first meeting the support lady we’re currently talking too I was in very deep derp due to a really rough day. They didn’t run away. So hopefully they will stick around so we can build trust.

I am meeting the support person again tonight for a few hours. I am quiet nervous but also a little bit excited.

One day this approach may mean I can do some of the things I have wanted to do but not been able to get enough support to arrange. It’s a different type of freedom.

This post is getting long so I’m going to hit publish so it does not get trapped in the drafts folder!

Published: 3 May 2015 | Categories: , Permalink

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