Photo of Jamie & Lion

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

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

Spoons in brief

Today’s post in my autism awareness week series is probably the easiest. It’s about the spoons metaphor.

First read the original piece by Christine Miserandino.

That covers most of it. The much shorter version is that spoons are a unit of energy. I start most days with 10 spoons and doing things uses spoons. A shower, 2 spoons, commuting 4-6 spoons etc etc.

When I run out of spoons, I tend to get very spaced out. Beyond that, if the pressure continues, it tends to cause a panic attack.

I actively manage my spoons throughout the day. Knowing which activities drain spoons gives me a tool for ensuring I never push to far.

Published: 30 March 2015 | Categories: Permalink

Autism and my senses.

Today is my second post for world autism awareness week. Today I’m going to cover some of the sensory side of autism and how it feels to be on the spectrum.

I have used a cake based analogy to explain autism for a few years.

The basic idea is that the features of autism make a layered cake. Each layer builds on the last.

The base is made of sensory perception. If the sensory environment isn’t right nothing else is possible till the sensory environment is made right.

The middle layer is communication skills and the top layer is social skills. The very top (the cherries) represent relationships.

This post is about the bottom layer. Sensory stuff.

Perceiving and processing sensory input keeps our brains busy. For the majority of people, the filtering is so effective then can choose freely what sensory input they perceive.

For example, most people won’t be distracted by ticking clocks, they can ignore background noise and focus on what they want. It happens without effort or planning. Listening to someone speaking is natural, there’s not perception of the background noise.

I can’t. I perceive everything and have to actively filter stuff out. This takes a huge amount of energy and focus. Many auties have the same thing.

The additional load due too filtering can make some environments completely unsustainable.

To reduce the load I use technology. For my sound perception I use ear defenders and noise cancelling headphones. For my vision I use sunglasses. When the detail of everything is overloading. I often take my glasses off entirely to reduce the levels of input. Effectively. If I can’t see the distracting small details (number plates, signs, the number of stripes on a shirt) I don’t have to filter them.

This filtering effects all my senses. Sound is the most obvious day to day, but it also effects my internal and external senses. Hunger, temperature and pain are extremely inconsistent for me.

If ever someone on the spectrum is having a bad day. First look at the environment. Noise, movement, light, and smells all require filtering.

Be aware of the environment and accept that people on the spectrum don’t have a choice about what we perceive. So we must furnish ourselves with the tools to manage it.

For me, that means I will often refuse to remove my ear defenders. Others find the feeling of an exposed head difficult and need a hood or hat in order to filter that sense.

Demanding that someone on the spectrum removes something they are using to filter the sensory environment. Is exactly akin to demanding someone with no legs to stop using a wheelchair.

Sensory stuff has a fun side. Sensory experimentation and seeking can be a huge source of joy and happyness.

The giant lion toy in the photos alongside this post is Mr Dennis Straction (Mr D. Straction). He’s a very large sensory toy. Covering textures, sounds and motion.

I think he does for me what smoking and alcohol does for others. He is awesome. The sensory input he provides can totally take me out of a situation and help me to relax and regain control.

So I hope that gives some context and explains a bit about the sensory side of autism. If you have any questions or comments. Feel free to leave a comment below or get in touch via email.

Published: 29 March 2015 | Categories: Permalink

Older Articles