Diagnosis Story 19: Finding The Right Diagnosis

This week’s story comes from Heather in Michigan. Heather is a queer autistic artist and writer who says that her autism diagnosis saved her life. She blogs at thequeerautistic.com/

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“I hope my story further encourages my fellow Autistics to continue to live authentically and bravely.”

Heather’s Story:

I’m Heather Aymer, a queer autistic artist and writer who works at Michigan’s largest LGBTQ Community Center. I supervise the Center volunteers and resources, interview and supervise clinical and macro interns, and also train and supervise our peer to peer support and discussion groups. Few realize I’m autistic, but diagnosis as autistic saved my life. Here is my story.

At the age of 23, I developed a number of health problems including type II Diabetes. So overstimulated my behavior was more erratic which earned me the now defunct diagnosis of bipolar disorder. I spent years seriously ill, with vomiting and diarrhea daily. My gynecologist and endocrinologist were struggling to assist me with my medical problems and urged me to have my psychiatric diagnosis and medications reevaluated. At the age of 27, I began to wonder if there was something wrong, not with me, but with perceptions of me.

Simultaneously, I was writing as I often did, and by chance explained to my then social worker a character I’d created. She told me my character sounded, “like an Aspie.” She explained to me what Aspergers Syndrome was and that her grandson had just been diagnosed. I told her I’d based the character off myself. In that moment, she paused, looked at me and said, “I bet you are autistic. You probably don’t even have bipolar.” As an aside, I never had the full panel of traits common to individuals with bipolar disorder.

The social worker gave me the name of a child developmental psychologist who was on the Asperger Society of Michigan website she knew. She told me to go get a second opinion, for her opinion was that I’d been grossly misdiagnosed. She agreed with my gynecologist and endocrinologist.

In three sessions, we determined that I had avoidant personality, that I was depressed and that I had Aspergers Syndrome. Finally, I had accuracy to explain myself, from which to advocate.

I got a different psychiatrist. I took my evaluations with me. I explained I wanted different medication, that I needed to be reevaluated. My medications were changed. The years of vomiting and diarrhea ceased within three months. I was no longer exhausted.

It took years for my body to heal, however. By the age of 33, my uterus had to be cauterized to stop excessive bleeding due to fibroids; problems my gynecologist suspected were exacerbated by my misdiagnosis and medications from years before. There was a cancer scare. I gave up being able to bear children.

Now at 38, accuracy of my Autism enables me to focus my energies and learn valuable, targeted coping skills. I have a career now, which I excel at and work with people that I love. I’m an autistic with a people job, and am lucky and grateful to work in a safe space where my identify is not only honored but appreciated.

As an aside, I’m no longer on psychiatric medications of any kind and my diabetes is manageable. I do encourage, however, that my story of misdiagnosis, which is common for individuals who identify as female on the spectrum, does not mean that a spectrum diagnosis eliminates mental health concerns. I simply was not bipolar, but I could have easily been autistic and bipolar, for instance.

Daily, I manage my needs with understanding of my slower social processing and my need for clarity. I can do so because having knowledge from which to create healthy boundaries and expectations has changed my life in wonderful ways. I have a great job, amazing colleagues and remarkable friendships. Because I honor, respect and love myself with understanding and compassion, I’ve been able to find and keep such individuals in my life.

No, it is not easy. I constantly negotiate and compromise, but it’s worth it to do what inspires me and to live with passion.

Thanks for reading, and I hope my story further encourages my fellow Autistics to continue to live authentically and bravely.

Heather Aymer

www.thequeerautistic.com

thequeerautistic@outlook.com

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