As someone who is Autistic and diagnosed with Schizoaffective Disorder the challenges of stigma and loneliness are something I share in common with others with psychiatric conditions. I use the term Autistic – it’s more to me than just a psychiatric condition.
My experience maybe more or less severe than others. I had 12 rounds of Electroconvulsive Therapy (ECT) in 2015 and 13 years so far of powerful psychiatric medication. At 38 years old, living with much stigma I feel the additional harm has been cumulative and not recoverable.
I am fortunate in that I can manage a small household like a 1 bed flat, keep it clean, manage a budget and maintain my health with rudimentary cooking skills. I do need some slack in my income as things tend to go missing when unwell and sometimes damage at home has occurred.
Unlike many people with similar conditions I am considered disabled by the state so I receive PIP as an extra benefit with Universal Credit. I think I have been lucky but also my university education means I’m good at filling in the application forms like an exam paper.
In practise PIP allows me to afford extra things I wouldn’t be able to maintain from savings alone. Expenses like extra heating, new clothing from Primark, things like home appliances, gardening & ear defenders, Bus Journeys, IT & printer, Blu-Rays (2nd hand) etc..
Maintaining all of the above is a lot of effort. Managing a home, my medication, keeping up with benefit assessments to maintain the income and managing my conditions all take a lot of time. I am a full time carer for myself. Now lets talk about stigma and loneliness.
Now after briefly describing all of the above some may say I deserve a medal. It’s clear to most that isn’t how we treat people with my condition(s).As I don’t work I don’t socialise with many people.The new people I do meet, want to know what I do for a living. I’m then shunned.
Many people see meaning from work and if they meet people not contributing to the economy then it is recognised as a Social Sin. There is not much compassion or understanding of psychiatric conditions. People with visible physical disability are even experiencing stigma today.
If you perceive the occupation question as the first fence of the race for building a social life. Then an Autistic unemployed person like me fails this test instantly. Though someone like me doesn’t give up so keeps talking.
The next question to arise is why aren’t you working? This could be in hidden disgust or just curiosity.When one talks about their disability there is the problem of being stereotyped or categorised into something your not.I sometimes bolt on my achievements to appear worthy.
After those 2 questions an Autistic person isn’t considered worthy to most people or at least not socially expedient to them. I have sometimes wondered if I should create a false personae with a pretend life. Unfortunately this leads us to the next fence the authenticity trap.
There appears to be a Double Empathy problem between people that most Autistic’s experience. Simply put Double Empathy is where very different experiences of the world interact with one another, they will struggle to empathise with each other. Read here for further information.
Most people want us to be authentic yet can’t empathise with the honesty of the plights faced by Autistic people. Another challenge is Autistic people don’t understand or act on the same social cues neurotypical perceive as cardinal rules.
An Autistic person may prefer to be more direct that they’re unemployed and claim benefits due to structural unemployment and the oppressive psychiatric regime they experience. Talking about a career break and herbal remedies they use may seem superficial and unworthy to them.
Usually the stigma Autistic people face means we experience loneliness. Many Autistic people like being alone. What upsets me is when I do choose to socialise I usually encounter stigma and rejection. A lack of socialising compounds it all further. It’s an Impossible Job.
For whatever reason, I carry a mental illness which is expressed in the diagnosis of Schizoaffective disorder. I have to take positive action that ensure my mood doesn’t get too high or too depressingly low. This includes taking medication which means it has side effects.
I don’t tend to tell people of my Schizoaffective diagnosis because of the stigma. I feel Autism is the best one to tell first as I figure there are clear signs I’m extraordinary (or a social sinner!) if you start talking to me. Usually I bolt-on “mental health issues” later.
Overall I live a fairly isolated life since my Mum and Stepdad died. To me the superpower (or higher power) isn’t my Autism but Christ. I pray to Christ every day and I try to follow his guidance daily. I feel the government and people who elected it have become inconsistent.
Our most important values seem to be honesty, hard work and not to be offended. Autistic people get trapped by this. As their hard work isn’t considered worthy and if their honest about the social contract being flawed – it isn’t welcome.
Autistic people like me are facing a Schrödingers Cat situation as in Quantum Mechanics. We can’t be different people to suit our “make believe” reality. We can only truly be ourselves with accommodations, compassion and understanding.
I speak about this further in my blog about the Social Contract here. Thank you for reading.