My independent life in 2015

On a good day, with 2 hours of Supoort during the day and overnight support I manage to do the following things.

• To remain safe all day, without a panic attack, shutdown, or meltdown.
• Between 1.5 and 3 hours of work at home
• Prepare cold meals for breakfast and lunch.
• Brush my teeth at least once
• Communicate with my friends via telegram
• Have a bath (with support)
• Keep my flat tidy and clean (with support)
• Dress myself and select clothing (sometimes with support)
• Eat an evening hot meal (someone else prepares it)

On a very good day (1-2 days a week)

• Leave the flat to walk to my friends house.
• Leave the flat to attend the local autism hub.
• Answer the door

The exhaustion is so complete that most days I can’t watch TV because I find the brightness and noise overloading and I can’t follow what is happening. I very rarely play video games. For entertainment I listen to audiobooks, podcasts and when possible I do colouring or play with Lego etc.

This is not how I want to live. I spend 85% of my waking hours managing extreme anxiety as I am home alone and feeling unsafe, exhausted and overloaded.

Achievements

My productive time is very limited. So I focus the time carefully.

Here are my proudest achievements of the last 3 months.

• written two articles for net magazine, an internationally distributed print magazine available in the shops
• Provided support to various high profile BBC teams like iPlayer and News
• Developed training and resources for accessibility at the BBC
• Follow and occasionally contribute to the W3C mailing list for cognitive accessibility
• Kept a blog updated about autism
• Written techniques and reviews for my autism website
• Managed a network of 55 accessibility champions including inductions and support with technical questions
• Helped a friend with a web project
• Built a prototype autism assessment tool for a special needs school

I am proud of these achievements as daily life is such a struggle. I have achieved what I have despite my living environment and health and only due to the phenomenal support of my friends. I am very tired.

2016 is an uncertain time for me. I need to reconsider my housing again as the current approach is hard to sustain. I might return to supported living so I can move forward with developing living skills and regains the energy currently wasted on daily anxiety.