My Story: Autism and Mental Health—Accessing Clinical Services
(Author’s note on identity first language: I use identity first language (e.g. "I am autistic") rather than person first language ("I have autism"). The reason for this is that autism is an integral part of what makes me who I am. I cannot separate myself from my autism. While many health practitioners use person first language, many autistic people choose to use identity first language as it better reflects our experience of the world.)
I am an autistic author and advocate. I also have a diagnosis of schizophrenia which I have had since 1995. Between now and being diagnosed with schizophrenia I have had numerous psychiatric hospital admissions.
I want to highlight what has been helpful to me and what has not worked so well in mental health services and elements of treatment. While all autistic people are different, the experiences I have had are common to many autistic people in mental health clinical settings and will likely relate to your work with autistic people with mental illness diagnoses.
When I was younger, I was self-destructive and sought out negative outcomes. I spent time in prison and had very difficult hospital admissions. From 2000 when I was 25, I changed my outlook, enrolling in university and eventually getting a master’s degree.
I moved to Canberra in 2007 to join the public service. I decided at this point—incorrectly—that I didn’t need a psychiatrist. I thought being a public servant meant that I would avoid any mental health issues!
Instead of seeing a psychiatrist I got my GP to write scripts for my meds. She is an excellent GP but has limited knowledge of mental health. This meant that when I started to get psychotic in 2010 she had no idea what I was going through.
It took a long time to access effective help and by the time I did I was extremely unwell. I spent the next three years accessing public mental health services including several hospital stays. In 2013 I got to a place of recovery which lasted until October 2019.
I was still employed in the public service and at that point was seeing a private psychiatrist. It was much easier to access help than it had been in the past but I was still very unwell. I had admissions to three separate hospitals between October 2019 and June 2020. At the time of writing this article I am doing much better and I am back at work full-time.
Autism and Mental Health Services
Autistic people with mental illness often present in an atypical way. We are often misdiagnosed or missed entirely. Clinicians often have a limited—or non-existent—understanding of autism, particularly older clinicians.
Autistic people are seen as difficult, attention seeking or manipulative but these qualities are often more related to a clinician misinterpreting our communication. Autistic communication styles differ significantly from neurotypical communication. I see this difference as being like different languages or cultures. It can lead to a lot of issues in health settings.
Some of the negative experiences I have had in clinical settings include:
- Invalidation. On one occasion when I was in hospital I was assaulted by another patient. I was very upset by this and told the nurses. Their response was to tell me to ‘be less annoying.’ I also had an incident where the toilet in my room didn’t work. I told the nurses five times and they didn’t believe me. I was too scared to use the public toilet so had to hold on until a nurse actually visited my room and saw for himself that my toilet didn’t work.
- Issues with medication. I have had issues with doctors changing my meds without consulting me. In one instance I was taken off a medication I had been on for nine years and discharged from hospital the same day. I was back in hospital within a week and that medication was reinstated! I also had a psychiatrist in a community team who had read a paper that said autistic people can’t have schizophrenia. When I asked to change my meds he made the change happen quickly because he believed I didn’t have schizophrenia, thinking autism and schizophrenia were mutually exclusive based on his reading. The result was that I became really unwell with psychosis and spent several months in and out of hospital.
- Misdiagnosis. I was misdiagnosed with borderline personality disorder in 1996. This is a very common misdiagnosis for autistic people and especially autistic women. It meant I was discriminated against in almost every clinical setting for several years until a new psychiatrist reinstated what is my current diagnosis. People in the public system do not have a choice in what psychiatrist they see despite this being critical to a person’s care and things like access to medications. It can be something of a lottery as to which doctor you get.
The positive experiences I have had in clinical settings—and things I would like to be emulated by mental health clinical services around the world—include:
- Multidisciplinary team. I was in a rehabilitation hospital recently and it was excellent. The setup in this hospital was a multidisciplinary approach. I had access to an occupational therapist, psychologist, social worker, peer worker, allied health assistant, exercise physiologist, dietitian, psychiatrist and nurses. These workers met regularly to discuss my progress and any issues. This hospital admission lasted four months and made a huge difference to my mental health recovery.
- Advance agreement. Having an advance agreement has been really helpful. It means my needs can be met even if I can’t articulate them due to being unwell. It is important to ensure every service I have contact with has access to my advance agreement.
- Consistency. Having access to the same worker is a huge plus for me. Changes in mental health workers are unsettling but seeing the same person—providing they are helpful and respectful—is a big positive.
- Workers who understand autism. If they understand me, my specific needs and my approach to life that is excellent as well.
Takeaways for Occupational Therapists
In general, I think mental health workers need a better understanding of autism and especially need to know the experiences of autistic people with mental illness. Lots of autistic people have mental health conditions and find accessing support really challenging.
Autistic people have the same right to supportive and respectful mental health treatment as anyone else does. As occupational therapists you can play a big role in making this happen.
About the Author
Yenn Purkis is an autistic and non-binary author, public speaker and community leader. They also have a diagnosis of schizophrenia. Yenn works in the autism/neurodiversity, gender diversity and mental health advocacy spaces. They are the author of eight published books on elements of autism and they are a regular blogger. Yenn has facilitated an autism support group in Canberra since 2011. Yenn has received many awards for their advocacy work over the years, including the 2016 ACT Volunteer of the Year Award and the 2019 ACT Chief Minister’s Inclusion Award. Yenn is a public speaker of almost 20 years’ experience and has presented at a range of events including at TEDx Canberra in 2013.