Contemplating autistic supported living

When I was a child and struggling to cope in the inhospitable world, I had a dream about what my house would look like, when I was old enough to make my own decisions.

My dream house had rooms painted different colours, so I could choose a room to be in to match my mood. But the most important aspect of my house was a massive impenetrable black front door, which I could slam from the inside, in the face of outsiders. I had built this ambition by the age of five and have installed that door in every house I’ve owned.

My home is a refuge. It's the place where I go to convalesce from the injurious bombardments of the world outside. It is my cocoon, where I am free. In my home, I have created atmosphere. I light my evenings with candles and burn scented oils. I lay on my sofa with my feet up and my mask off. Every day I decide what I will eat that day, according to my mood, the weather and how I feel. I have favourite cups and plates. I have silence.

As we get older, most of us give some thought to what will happen if we become unable to live independently. Some of us can rely on family or a network. Others don't have this: or conditions of ageing prove too difficult for family to cope with. We are faced with two options: hired-in care at home, or supported residential accommodation.

For me, either option reduces my autonomy, But I would prefer to stay in my own home, in the environment of my own design. However, it would cease to be a haven. Not being very wealthy, I would have no choice about the individual who arrives at the door. Their character, their prejudices, their garrulousness, their respect for my privacy and dignity - all would be beyond my control. I would have to fit in with their timetable and my care needs would be subject to their standards of good practice. However, once they depart, my life would be my own again.

The prospect of supported residential living is my nightmare scenario. To be bearable, any residential home would have to adapt considerably to accommodate the person I am, because I cannot bend my autistic self to fit the environment and practices of most residential care homes. I cannot thrive if the sensory environment is beyond my control and my privacy is within the gift of others. I need an awful lot of ‘alone time’, to recuperate from being amongst other people. Most homes encourage social interaction: eating together, sitting together, group outings and the dreaded singalongs. Then there is the peer pressure of other residents; old folk can be remarkably intolerant to those who don't fit in. I have had a lifetime of being judged and bullied and the possibility of finding myself trapped with such treatment would be intolerable. The stress level would be too great and there would be no relief.

A few years ago, I participated in a conversation about residential care homes for autistic adults and we came up with some ideas, which you can find here. The problem is, that to the best of my knowledge, such places don't exist and I am already over 60 years old. I cannot imagine how generations of autistic elderly people have managed; but I can imagine that expressing their pain has landed many in locked wards, sedated. That is neither care nor support.

If this were to be my future, I reject it. I have no wish to live a life that is not worth living. Society owes all of us an equal duty of care and dignity in our declining years, but to date, social care commissioners or providers have never considered what equality looks like, for its autistic elders. I know I am not the only older autistic person with an escape plan.

About the author

Cos is an autistic speaker, in the UK and abroad. She teaches and writes about aspects of autistic adulthood, has worked on various research projects around health and welfare in autistic adulthood and co-authored research papers. Cos has also worked at the BBC, the National Sound Archive and in the theatre.

Related resources or further reading

Catherine J. Crompton, Cos Michael, Michael Dawson, and Sue Fletcher-Watson. Residential Care for Older Autistic Adults: Insights from Three Multiexpert Summits. Autism in Adulthood.Jun 2020.121-127. http://doi.org/10.1089/aut.2019.0080