As autistic people, many of us have found our country’s mental health systems a regular feature of our lives. Many of us experience mental health issues throughout our lives; often caused by a lifetime of masking undiagnosed autism, but also because our needs as autistics are largely ignored.
A common theme I see reported by those of us in these systems is that of misdiagnosis and mistreatment. Those seeking diagnosis are often diagnosed with mental health conditions that perhaps share traits with autism (this seems to be especially prevalent amongst women and people assigned female at birth). Others are treated as a nuisance because their brains do not have the desired response to medication and therapies.
My personal experience led me through years of misdiagnosis as having a personality disorder. Even after I received my formal autism diagnosis, my psychiatrist desperately clung to the diagnosis of EUPD or Emotionally Unstable Personality Disorder (aka Borderline Personality Disorder). This label was used to accuse me of being an uncooperative and difficult patient.
I sure many of you can relate when I say that there is a significant amount of stigma amongst professionals when it comes to people perceived to have a personality disorder. This misdiagnosis followed me for years, and made my time in the system confrontational and unhelpful until I was able to shed the diagnosis of EUPD.
Inpatient treatment can be especially complex. Some inpatients are accused of being challenging patients, others find themselves incarcerated in the system for months or even years. Some find that even at the moment of most severe crisis, they can not get access to the support they need to recover.
This problem seems (in my opinion) to arise from a lack of understanding of autism, especially autism in adults. Many view autism as a condition of childhood, seeming to believe that we will grow out of it as we age. Others consistently infantilize us because of the traits we do not mask.
As mentioned previously, women and people assigned female at birth, as well as ethnic minorities face a particularly tough path to diagnosis. Research into autism has typically been based around young, white, male children; and this is what they have used to develop the diagnostic criteria for decades.
These issues in the diagnostic process present huge barriers. Individuals forced to live without diagnosis often learn to mask their autistic traits as a survival mechanism. It isn’t unreasonable to wonder if these gaps in the diagnostic process have contributed to the troublingly high suicide rate amongst autistic adults and teens.
So how can we get autistic adults the diagnosis and support that they require?
We need more funding for autistic led advocacy networks. We need to give those networks the resources they need to provide independent advocates to all who require them. In an ideal world, all people going through the diagnostic process would have an advocate alongside them, ensuring that their case is considered fairly and appropriate support is offered.
Another important measure to mitigate misdiagnosis and mistreatment is service user involvement. Policy should always be guided by the experience of the people who have been (or currently are) in the system. Service user involvement is extremely valuable, and can often have a significant impact on how services are commissioned and implemented.
Finally, we need autistics from all backgrounds to make their voices heard. The autistic community is incredibly diverse and intersectional. We need to speak loudly enough to make professionals adjust the diagnostic criteria to be more inclusive of all autistic people.
So many of us found our diagnosis while in the mental health system, which is why the level of misdiagnosis and mistreatment that exists there is so concerning.
I dream of a world where people don’t have to live with self-diagnosis. I dream of a world where people have fair access to formal diagnosis and support, and fair treatment for any co-occurring conditions.
The neurodiversity and disability rights movement is making huge strides in promoting the cause of appropriate and fair access to diagnosis. It is vital that we keep this momentum going and capitalise on the wealth of experience that we have between us as a community.
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- Weird Pride Day: Changing the narrative - March 4, 2021