Teach Autistic Youth They Have a Community

Other Autistics have written on the importance of disclosing an autism diagnosis to children. I fully agree. I also think knowing a diagnosis is a powerful tool in many ways, but it is not the only obligation of parents. I knew immediately about my ADHD diagnosis at age 7 or 8, then later my autism diagnosis at 14. I didn’t know I was disabled until college.

Many adults in my life told me I had ADHD. They just said it made me hyper, and gave me attention issues… then kept saying the same positive things about me: Smart. Unique. Creative. Reads a lot. When I got my autism diagnosis, they started saying: Smart. Reads a lot. Very high-functioning. Uniquely aware [of the diagnosis]. When they spoke of things I struggled with – like attention issues, staying organized, being polite, and making the right words happen – it was not to acknowledge disability, only deficit. It was not to work with me or discuss ways other people could adapt. I needed to adapt to the world, except for some accommodations.

They tried to quantify my life into skills and deficits. They told me I was more aware than others – like those in the special education classrooms – despite those kids being the most accepting of me when I hung out in their classrooms. I learned my deficits outweighed other qualities. I learned that there was no one else at all like me. I learned that I was alone. Not knowing what the diagnosis meant affected the ability to find friends, worsened depressive episodes and anxiety, and increased social isolation.

In my younger years, I had been able to get by through extensive book reading, writing fiction, and other solo activities. As I aged, my differences became more apparent. I wondered why I couldn’t be like everyone else or have friends. I had about one close friend in my high school years – an online one who meant a great deal to me. We couldn’t meet up in person, which I wanted desperately.  I wouldn’t know anything else but isolation until college – and making two autistic friends, along with a couple of others who accepted me.

The diagnosis given to me answered the question why for why I worked the way I did. No one helped me understand how it made my brain and body work. No one explained that it is a disability with ups and downs and effects from society. No one aided me in accessing community and culture. The diagnosis did not simply hand me all the tools I needed for life, in of itself. Community, once I found it, did.

Much of the autistic community may exist online, but it is vital. It will give youth access to writings by other autistic people. It gives them access to people who have written or know about coping tools, self-advocacy, and policy issues. It gives autistic youth an autistic culture. Parents (and other adults interacting with autistic youth), please explain autism to autistic youth. Please tell them more than a diagnosis. Please help them find other autistic people. If you don’t know the answers to their questions about autism, ask autistic people. It will change their world at least as much as telling them the diagnosis.

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Part Two (Upcoming): Tips and Ways to Teach about Community

Rewriting the Narrative on Psych Ward Abuse in Journalism

Psych Ward Reviews gained a new feature in January 2017: a news article repository of staff-on-patient abuse in hospital psychiatric wards. It is an ongoing effort, both of searches and a morbid set of daily Google Alerts with phrases such as “psychiatric patient abuse.” As part of my search process, I have read over about two hundred articles so far.

One thing of note was that many of the articles on staff-on-patient abuse I found were not in major publications. They were in local news outlets or smaller magazines. And as I knew, there are many failures of psychiatric wards as a crisis care model. These failures can involve staff-on-patient abuse, suicides, ill-maintained facilities, and Medicaid fraud. My focus here is how journalists cover abuse and other failures.

Journalists do so with a few different lines of thought. Many fail to address issues that come with psychiatric wards as the main method of crisis care. These problems include taking away patients’ rights and ability to make decisions. Instead, they discuss issues such as funding and staffing shortages, and overcrowding and bed shortages. However, the reasons for psych ward abuse are power dynamics and ableism.

The system requires institutionalization in secured wards away from the public. Patients then lose their rights (available in theory). The power shifts to doctors and staff, who make decisions about a patient. Many hospitals seek patients for profit. These are settings prone to abuse. We must build a stronger network of community-based crisis care, including peer respite centers and support. There must be meaningful oversight and accountability for any community care providers.

But why don’t journalists talk about creating alternatives to psych wards? The reasoning by many journalists is that shortages result in increased abuse and neglect of patients by staff. They then describe hospital failures as inevitable because of these shortages. But the psych ward system’s issues are structural, rather than wholly solvable with money. Journalists could instead talk about these structural failures. They could do so in many ways.

They could cite the various works around abuse in institutional settings, and question power imbalances. They could push for more accountability and data on abuse rates in articles. They could interview former patients, to see what community options they want. Depending on the size of their platform, they could craft a new crisis care narrative for the broader public. The narrative would present alternatives entrenched in community-based, rights-affirming crisis care.