One of the most common emails I get from readers revolves around one question. People reach out to me asking, “should I get my child diagnosed?” or “should I get diagnosed?”
Unfortunately I cannot answer that question.
The decision to seek out an autism diagnosis is a personal one, and you must search inside yourself and look at your own personal circumstances to decide if getting diagnosed is right for you.
Just because you are not ready to get diagnosed today does not mean you will not be ready to get diagnosed in the future.
I am diagnosed because getting a diagnosis eventually was right for me, but when I first discovered my autism I was not ready to be diagnosed right away.
At first I was in denial and did not understand autism. I was not ready to talk to a psychologist because I was still lying to myself that my challenges were nonexistent or that there was some other explanation for them. Autism seemed so final; I was not ready to accept it.
When I started to think about diagnosis I quickly realized there was a limited pool of doctors who were qualified or even had experience with adult women. None of the doctors I found took my insurance. If you do not live in or near a big city you may be taking a long drive to see a doctor.
Getting an adult autism diagnosis can be expensive. I’ve had people tell me they paid out of pocket $800-$5000 to get diagnosed. Because a lot of the autism specialists are out of network, insurance companies will often leave you with the fees.
Before I started reading about autism and talking to other Aspies I had a hard time describing the feelings and things going on inside my body. Reading about autism was like unlocking a key that let me start talking (mostly typing) about what has been going on inside me my entire life.
I have alexithymia. It is part of my autism that makes it hard to describe my autism. I have had to teach myself to describe my feelings because if I don’t consciously ask myself how I feel, I don’t know. Before I started asking myself this question I never would have been able to explain what I was feeling because people always told me how I was feeling growing up.
People told me the wrong things about my feeling sometimes, and because of my alexithymia I believed them. Some of my feelings and emotions got confusing. I needed to untangle this mess before I could accurately talk to a psychologist about my autism.
Once I had finally straightened all of those things out I felt like I was ready for an autism diagnosis.
I journal a lot, and that has helped me tremendously in life. People with alexithymia should write. It helps us work out our feelings.
I took a 10-page paper to my psychologist explaining my life story without using any of the autism terminology. (Doctors seem to be put off by laypeople who sound too scientific. They think we are up to something when we use big words.)
The doctor tested me, and I answered her questions honestly. I was extremely nervous the entire time, afraid she would come back with a wrong diagnosis.
After our first meeting I had time to think on her questions and sent her another five-page paper further explaining things I could not express face-to-face.
The way she had asked about stimming had confused me, and I had under expressed how much stimming I actually do. (I need questions asked the correct way or I get confused sometimes.)
If you can get your doctor’s email address or bring in typed papers I would strongly recommend doing so. Because I take in information and do not process it right away, sometimes on-the-spot conversations are impossible. I made a point to mention this to my doctor.
Tell your doctor everything you have trouble with. Make a list.
Autistic burnout (sometimes called “autistic regression”) is a real thing. All of the sudden all of my childhood sensory symptoms were back and worse than ever. It seems like stress and change can have a huge impact on this.
In the end getting a diagnosis was right for me when I started having trouble coping with the “real” world.
My diagnosis protects me from liability if I ever have a meltdown in public or have sensory problems that cause confusion. It lets me ask for small accommodations at work – like sitting in a quiet spot with natural light.
Now that I am diagnosed I can ask for things – small things that were refused before – and people are supposed to give them to me.
I won’t ask for much. I don’t want to take advantage or draw extra attention. More than anything I just want to be comfortable in a world that was not built for me.
Follow this journey on Anonymously Autistic.
Image via Thinkstock.