‘Mum, can you do my ironing for me please?’
I put the phone down feeling frustrated and annoyed again that I’m still having to make these calls despite being in my 30s. I’d always assumed that by my 30s I’d be living a fully independent life. This didn’t include asking my Mum to help me iron! The reality has been different; and although I can enjoy periods of time in self-sufficient tranquillity, there are also extended times where very basic tasks require the intervention and support of others. The pressures and strain that autism brings can become overwhelming and the feeling of loss of independence can become despairing and frustrating, so what can we do to stand on our own two feet and stay on top?
I’ve by no means got this sussed and it’s a continuous learning curve but in this week’s blog I wanted to share 10 approaches that have helped me maintain to live a fulfilling life so far. These are approaches that have worked well for me but as we are all different they may or may not be of use to you. I’d love to hear any tips or techniques that have helped you, please feel free to share your thoughts or questions in the comments or message me. I’ll expand on each one in future blogs.
1: Keep a Diary
If this list was limited to just one item it would be this, my diary. Visually seeing what I’m doing and when is the foundation to my independence. I use a colour coded system to help balance my time.
Red = Important appointments (work, medical appointments etc, these have fixed times that if I can’t make require me to lot someone know)
Orange = Chores (Housework, personal admin, shopping etc, these need to be done but don’t have a fixed time)
Green = Down time (Personal time to relax or unwind, hobbies etc)
Blue = Social time (time with friends, clubs or socialising)
Using colour I can immediately see if I’m doing too much and helps me plan my time.
2: Get to Know Yourself
‘But I do know myself!’ I hear you cry! Yes you do, but for me the start point in building any form of independence is to really understand and know myself. It’s all very well if my parents or friends can spot the signs that I am getting frustrated, angry, tired, but can I?
Developing a self awareness is an ongoing and lengthy process but one that has really helped me. Simply analysing situations after they’ve happened and learning to recognise the emotions and behaviours in advance is a great tool to have in managing things.
As an example I’ve learned that in the build up to a meltdown I feel tired, my attention ‘flickers’, I feel nauseous, My thought process becomes very pessimistic. Recognising these signs gives me a much larger head start in keeping myself safe and prepared.
Questions you could ask yourself are what makes you relaxed? What makes you angry? What time of day am I most alert?
3: Build a Support Network
For me independence doesn’t mean becoming a lone wolf, it means taking responsibility for knowing when and where to ask for help. Building a support network is key to this.
For many years I’d start to shutdown and just wildly cry out for help in any direction and just get frustrated. At the time I was a church-goer and the expectation was that someone / anyone there would step in. They didn’t, I’d get upset, the cycle would continue. A more structured approach was needed. I’ve created a list for this very purpose. It helps me to recognise who can appropriately help with certain tasks. A home care charity and my parents can step in and help with domestic tasks and cooking (back to the ironing, because of my sensory issues the hissing of the iron triggers meltdown, having a meltdown with a hot iron isn’t wise!), friends are identified who can provide accommodation and moral support etc.
It’s easy to become confused by the daily tasks required to live independently, piles of bills, housework, care and therapy regimes, cooking, shopping, something’s broken, laundry…..
When faced with too much information and detail my brain simply shuts down. It becomes important to prioritise and tackle one thing at a time. I use a to-do-list app on my phone but a list on paper or a whiteboard work just as well.
Identify what needs doing and decide what to tackle first. Perhaps someone you’ve identified in your support network can help with some of the tasks?
When faced with pressing chores and commitments it is easy to over work and burn out. I’m much more susceptible to catastrophic meltdowns and shutdowns when I’m tired or over busy so planning time to sit and rest is just as important as planning time to vacuum the lounge. Planning a good mix of productive time, social time and relaxing time is important. I use the visual diary (point 1) and priorities (point 4) to help and self awareness (point 2) helps guide me as to how much capacity I have.
6: Keep a Strict Budget
Being in control of my finances has been one of the most useful skills I’ve learned in helping maintain my independence. Although it would be nice to have millions I don’t and have to make do on a tight budget. To make sure I stay in the green as much as possible I use a spreadsheet to track my bills and expenses and carefully calculate the amount of money available each month.
A set amount is put aside to cover direct debits for bills (rent, water rates, electric etc)
For annual bills (TV licence, Insurances etc) I divide the figure by twelve and save up each month
For spending money I take a set amount out and use cash. This helps me see how much money is available instead of blindly spending on card. This way it is easier to decide whether that expensive sandwich for lunch or new PlayStation game is really affordable…
7: Practice and Learn Social Skills
Knowing I don’t come complete with the instinctive social abilities of my peers doesn’t remove my need to have them, nor does it excuse my lack of them. One thing that I do have is an ability to learn.
Observing the way others interact and communicate and then mimicking the styles and flows of the conversation helps me to learn and then naturally communicate. The internet is also a great tool to use. Typing searches like, ‘How to start a conversation’, ‘How to make friends’ etc brings up a wealth of information.
Don’t be afraid to make mistakes and be persistent. Like all skills it takes time and patience. I found travelling to be a great way to meet new people and use practice my social skills. A few nights in a hostel brings a steady stream of new test subjects to experiment on and if it all goes wrong then who cares? I’m never going to see them again and just being foreign excuses me of any faux-pas I make.
If the first night I am too forward and talk too much at people, putting them off then the second night I can try calming down and using a different approach.
At home try your skills at the supermarket, café, anywhere really. It’s not always easy or comfortable but seek out opportunities to engage in conversation. The more you do it the more natural it becomes.
8: Use Flowcharts and Scripts
I’m very visual and flowcharts work well for me. If I can change the format of information to help me out then I will. Creating quick help guides can be a real asset when I’m beginning to struggle. For example simple flow charts or pictorial guides to show me how to prepare a simple meal, clean the kitchen, manage my medication etc can help me manage myself when I have a meltdown or shutdown. More complicated tasks like maintaining the car or arranging an insurance can be templated out so I can self guide myself through these rather than having to get help in.
Scripts are important as when I start to go through meltdown or shutdown cycles I fast loose the ability to speak coherently or become virtually non verbal. Simple scripts I can send by text or email can be used in situations like letting my boss know I need a day off work or letting my support worker know I need help.
I can also use scripts to help prompt me with how to appropriately make, change or cancel plans.
Have a think about what you struggle to communicate, perhaps a scripted response or flowchart may help you?
9: Keep a Journal or Blog
One of the biggest challenges I find in being able to focus and be productive is the incessant noise and thoughts in my head. Having autism makes it hard to process and filter information, I find one way that helps me do this is to write it down. This can be by brainstorming or journaling, on paper or on computer, it doesn’t matter as long as it’s out of my head. Not everyone finds this helpful but for me I find this therapeutic. As a quirk I was so conscious to keep my random scribbling private I write them in Cyrillic. This in turn acts as a great pub trick to break the ice when meeting new friends, ‘Here’s your name in Russian…’ I say while writing it down on a coaster.
10: Stay Flexible, Learn and Adapt
Finally we come back to a bit more self analysis. Rigidity and inflexibility come hand in hand with autism but this is something that I work hard to break.
As I try an new system, approach or technique I try and regularly adapt and reflect on if it’s working for me and if it can be improved.
As I develop and improve myself; so do the systems. The visual diary started as an A4 week per page, I then found A5 day per page better for me. I used to benefit from lots of social time, now I prefer less. You might like the idea of trying a visual diary for yourself but find it better to use a wall planner with sticky labels. It’s whatever works for you.
Don’t be afraid to try things, experiment, learn when things don’t work so well and learn from your successes.
Please feel free to share this post and add to your comments things you have found helpful.