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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

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

My Experiences with a Timetable and Sensory Diet.

Over the last few months I have been focusing a lot of time and effort on improving my independent living skills. At the moment I am very well supported day to day, so I am using the stable time to try and establish better skills for when I next need to live alone.

Coming back from chaos.

A few months ago before I was able to get more suitable support I was in crisis. It was very clear that living alone placed more demands on me than I could manage. Once I was overwhelmed the anxiety and panic attacks took over.

My new support arrangement (A friend living with me, handling most day to day jobs) has brought back the stability but it wont last forever.

I see this whole experience as a great opportunity to learn and improve. I know I struggle in certain areas, so I have been working with an Occupational Therapist to develop strategies.

Strategy 1: Timetable.

The first strategy we put in place was a timetable. I had tried timetables before but they had always failed. This time, we developed a timetable which was more forgiving and less demanding.

My previous timetables went to minute by minute precision. This eased my anxiety, but proved almost impossible to follow.

My current timetable deals with blocks of the day. Morning, and Afternoon. Activities are placed on the timetable and the timetable is also used to coordinate my support. For example, my timetable lists medical appointments and who will be supporting me for those appointments.

The timetable I am using only runs from Monday to Friday. The weekend is too variable. I also want to leave weekends to be very flexible. This means no essential chores cannot be left to the weekend. The weekend is a time when I have no demands. Two clear days.

My timetable is currently very sparse. The only “required” action each day is a shower before noon. From the perspective of my timetable, my work hours are optional. Another feature of my timetable is a defined “break” at 4pm. (±1 hour) That break is normally taken as a nap, it gives me a chance to recharge spoons in the middle of my woken period.

Strategy 2: Sensory Diet

A sensory diet is a way of managing my spoons throughout the day. Each task is given a rating from Double Red (very draining) to Green (refreshing). Then there are some rules around how tasks are ordered.

The main rule is that double red and red tasks can only be followed by green tasks.

This imposes some constraints on my flexibility. However, it also massively reduces the anxiety. So whereas I use to be very flexible, the anxiety would be crippling and lead to panic attacks. I now am less flexible, but also less anxious.

An example of a red activity would be a shower. They started double red, but by redesigning my shower space (I have only the bottles I intend to use, lined up in the correct order, I make all the decisions BEFORE I enter the shower) we have reduced it to a Red.

At the moment my shower is only due “sometime” in the morning. I aim to have it early, but in reality I often just don’t have enough spoons. After a shower I have very low spoons so I take a break to recover spoons before I continue.

Assume nothing, start small.

I mentioned before that previous timetables had failed because they were too complex or ambitious. This timetable is working because it’s not ambitious. Its been running for about 5 weeks now and it of the “required” steps I am only just consistently starting to get 5 out of 5 each week.

I am positive though, while many people can and do take a shower every morning without any issue, I can’t do that yet. I am building up to it. Over the next few months and years I will slowly increase the complexity of my timetable.

For example, from next week I am planning to add a “breakfast” task as a required step. To make that possible, I also need to introduce a “shopping” task. As it currently stands, the evening mean I get via my support arrangement is the only meal I eat most days.

It’s going to be a few months before I get consistent with those things. Once I am consistent with those things I can then slowly introduce smaller time limits and generally work towards having a sustainable morning routine.

My timetable assumes nothing. The reality is once overloaded I have very little ability to do things. It can surprise people, because most people see me doing things I am good at, they don’t see the challenges I have with other aspects of my life.

Starting from nothing and building up makes the timetable sustainable and something which is sustainable is more important than something which is complex but brittle.

The future.

I have secure support from now until September. I am using that time to establish the timetable and get support to follow it. Once the timetable is established I should be able to function without so much support. One day, I may even get into enough routines that I wont need the timetable or support at all.

Conclusions

The timetable and sensory diet approach has worked well for me. While it may seem overly simple, the structure it introduces has been really useful. The OT i am working with works with many people on the autism spectrum so I trust her judgement. A great deal of the work we have been doing is just pragmatic changes and developing routines.

When I first lived alone back in January I didn’t expect for it to be so difficult. So its been a bit of a bitter pill to swallow. To a certain extent I thought I had the autism beat… i was very wrong.

I use to reject many of the autism things as just being silly, or overkill for my needs. But it turns out some are extremely effective. After only 6 months, I would not be without my ear defenders and after 5 weeks I can see the value in the timetable approach.

It has been a difficult few months, but I am laying the ground work for a more sustainable and happier future so its been worth it. If you have any questions, feel free to leave a comment. Comments are not published immediately, so if you ask i question i can reply via email.

Published: 11 April 2015 Permalink

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