Something I get asked fairly often on twitter, or during events is “what does good support look like”. It’s a good question because support can vary so much. I require quite a lot of support day to day, but other people may need more focused support or support in different areas.
In this post I will share what good support looks like for me and why I think it helps. This won’t be true for all autistic people, but hopefully one good example is useful in showing whats possible.
Perhaps the most important thing I have learnt over the years is that autonomy is more important than independence. Or to put it another way, the ability to make choices about my life is more important than only doing things which I can do unaided.
Autonomy can be for big things like choosing where to live, or what to eat; but autonomy also applies to the smaller things, like choosing the way to do things or the small details of daily life.
Good support for me starts with a focus on autonomy. Supporting me to make useful choices about my life and then support to make those choices happen.
Most of support is provided via routine. We split my week between my standard routine days (with support or 60-90 mins each evening) and my intensive support routine (with support for 3 days and 3 nights midweek).
My standard routine is very well defined, with a set list of activities and a set order. However, the routine is the default plan. It’s what we do if we don’t have a reason to do something else. We don’t consider it a bad thing to be off routine, as long as I choose to be off routine. Being pushed off routine is very different to choosing to go beyond normal routine.
Good support for me has a foundation in good routine, but it’s also flexible enough to be adaptable as needed.
Generally speaking, when folks are supporting me they are encouraged to “tell” me to do things, rather than “ask me”. This might see a bit strange and a conflict with my autonomy, but it’s kinda more subtle.
Most of the time the support folks are telling me or prompting me to do things I had previously asked them to do. I do give up some control, but being told “go and do your teeth” is much simpler. It’s clear, concise and easy to follow. We try to reserve asking for when there is a real decision to be made. It’s much simpler to be slightly rude and direct than to tip toe around the power dynamic.
If I am told to do something, I can always say no if I have a reason not to proceed. The difference is subtle, but can make a huge difference in how my energy is used. This little tweak in communication helps things to flow well during routine.
Each week I get around 3 days of intensive support. Most of the time is for working (funded via access to work) but one of the days is for social care things. It’s when we do a weekly shop, visit the dr / dentists and do laundry etc. It’s also when we go for an adventure. More often than not the adventure is based around exercise or an activity like a bike ride.
The adventure is worth doing, it’s good for my health and means I get out. But the adventure is also extremely useful for non obvious things.
In the car driving to the bike park we might discuss something which identifies a medical issue, or we might call someone to sort out some paperwork or something else. Oli (who I do most of my adventures with) is really good at teasing out things I had forgot about or had perhaps misunderstood.
The adventure also feels amazing from an autonomy standpoint. Choosing to have McDonalds on the way home, or choosing to ride in a new place gives me a greater range of choices. It’s nice to do something different from day to day life.
Finally, between adventures I also have little task like bike cleaning or maintenance. They extend the sense of adventure through the whole week which has done wonders for my mental health. It’s important to have something to look forward too.
The final bit of my thoughts on “what does a good support look like” related to flexibility and allowing for routines to be different over the course of a week, month or year.
My routine time is split between 4 low support days and 3 intensive days. The low support days can be a bit tricky, but generally speaking they go pretty well because during the intensive support days we sorted out all of the big things.
The three intense days are great, but they can be very tiring. The three intense days are when I get most of my “things” for the week done. Be it work, adventure, or day to day life. They are brilliant, but I can’t sustain that level of activity everyday.
The “up and down” nature of the routine is good. In the past I had a very “steady” routine. It was good in that everyday was about the same energy level and cost, but it was limited in that I never had enough time to do anything big. On an intensive day I have ~4x the support but probably get 8x more things done.
To put it another way, it’s less about the total hours of support, and more about how they are distributed. Having a few amazing days and a few slow days is better then everyday being mediocre and frustrating. The slow days days compliment the intense days, and the intense days compliment the slow days.
Thats pretty much it for now. It’s taken us a really long time to get my routine into shape and in 2020 I have somewhat thrived. Finding a good support routine around the pandemic has been tricky, but its worked really well. So much so that even when the pandemic ends, I think we will stick to the routines we have now.
I have tried to focus on the bits of “good support” which seem most common, but this is only my thoughts. If you want to ask me about something, or share something that works well for you, please get in touch via twitter or leave a comment below.