The Mighty Logo

My Struggle to Find 'Home' as a Woman With Autism and Mental Illness

The most helpful emails in health
Browse our free newsletters

I am a woman with a diagnosis of an autism spectrum condition and atypical schizophrenia. Housing has been a significant challenge for me throughout my life. Here is my accommodation story.

Housing was always a challenge for me. I moved out of home at 17, an undiagnosed autistic woman sharing accommodation with other young adults who seemed to be privy to a secret rule book about etiquette which I was not able to read. I went through a new shared house every six months for some years. I would either find the inhabitants of the house irritating but be unable to tell them, or the housemates would get sick of me and move out, leaving me lonely and poor, paying the rent for an entire house and sitting by the phone waiting for it to ring. In one place my housemates stole all my money and moved! Sharing housing wasn’t the most helpful accommodation option for me.

In my early 20s, my life went on a bit of a chaotic trajectory. When I applied for public housing some years later, I was assessed as being the highest level of housing need and was granted a spot on the priority housing list as a homeless person. I was a little surprised at this, but when I realized I had lived at over 40 addresses in the previous few years, I understood why I was granted priority status.

I received welfare benefits for 15 continuous years. The worst thing about this was the complete lack of choice around where I lived. I spent years being sent to live wherever there was a spare place – from crisis housing in a boarding house to a dodgy suburb where stray dogs prowled and I wouldn’t venture outside after 6 p.m. I also lived in a variety of mental health crisis accommodation programs. I spent two years sharing an old mansion full of spiders with 14 others, all young people with serious mental illness. Other residents would drink and use drugs, and their mental health crises were triggering and frightening.

When I finally got my “own” public housing property – which I was expected to inhabit until my dying day – I was filled with horror. Because I was on the priority list for public housing, I had to accept the first property I was offered, otherwise I would go to the back of the waiting list, which at the time was seven years. I thought I could avoid high density public housing because my application included a note from my psychiatrist saying I shouldn’t be in a development more than three stories high. Most of the public housing in Melbourne at that time was high rise, and I really didn’t want to live somewhere like that. Sadly, I was given a place in a huge development of many blocks of 12 apartments. Most of them were inhabited by alcoholics and drug addicts. There were even school bullies who always asked me if I was a boy or a girl. Their derision took me straight back to my own very unpleasant school days. I lived in this place for almost four years.

My awful housing situation was a catalyst in me finishing my education and applying for public service jobs, despite the low likelihood of finding employment with my disabilities. Had I lived in a nice low density housing complex, with some public housing and some privately-owned properties, I would probably never had taken the journey I did. The fact that my living situation was so challenging set me on the path to where I am now. I am happy about that.

I moved to Canberra in 2007 to take up my new job. Shortly after, I bought my little home, known to its friends as “Whimsy Manor.” I love my little flat with all its art and its resident black cat. It took me a few years to appreciate the charms of my little apartment though. I had a number of expensive maintenance issues for the first couple of years, and these contributed to a significant episode of mental illness that lasted form 2010 to 2013. Having been in insecure housing for so many years, my anxiety around my home was intense. I kept worrying the walls would fall down. I had to make a conscious effort to love and accept my home.

I often reflect on how fortunate I am to have this little piece of Canberra which is crammed full of my things. I don’t have to share it with anyone except Mr. Kitty. There is no longer a risk of being robbed by the junkies next door – because I’m fairly certain there are no junkies next door! My home is my supportive place. I know many others in the world are not that fortunate.

There are so many people living in unsuitable housing or insecure housing. It can be a huge issue for people with mental illness, autistic people, and people with disabilities in general. We can struggle in shared housing, and low employment rates mean for many people, buying property is an impossible fantasy. I wish I could buy a Whimsy Manor for everyone who needs one.

Originally published: September 26, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home