The Challenges of Getting the ‘Right’ Diagnosis

By Megan Amodeo

If you are reading this, you, a friend, or loved one most likely has received a diagnosis of Autism Spectrum Disorder (ASD). Even if you have not been diagnosed with ASD, you might be interested to know how challenging it can be to get the right diagnosis.

I am a prime example of misdiagnosis.

I was not diagnosed until my mid-30s, but my road to the right diagnosis started in my teen years. My childhood was less than desirable. My parents were emotionally and verbally abusive and found most of my behaviors highly annoying. I was always the weirdo, the odd kid, the geek.

After numerous attempts in my late teens to try to get my parents to understand me, they finally sought help to stop my undesirable behaviors. More than anything, they wanted me to act normal. They decided that a therapist could “cure” my unwanted weirdness. After months of therapy, nothing changed. I was still me, still weird and still an annoyance to my family.

That was when my mother decided I needed to see a psychiatrist. She felt someone needed to medicate me out of my bizarreness. Keep in mind I was in my late teens trying to make it through college. I was also moderately depressed because I could not stop being or doing whatever it was that my parents didn’t like.

Behold, my mother found the perfect psychiatrist to “cure” all my problems.

I will admit, he was a relatively nice man. He seemed genuinely interested in my behavior patterns. I suppose I was interested in what made me such an annoyance to my family as well. He intently listened to a long list of issues I said my family found bothersome, and instantly diagnosed me with Obsessive Compulsive Disorder. He said I needed to be medicated to stop my unwanted behaviors. So I started several medications that very day.

As you may already have guessed, nothing changed. I was still me. That’s not entirely accurate, I was me in a drug induced fog. I didn’t feel like myself. I had trouble sleeping and concentrating due to medication side effects. My psychiatrist thought I needed a new medication to control the side effects from my other medications. I started an additional medication and gained 40 pounds and almost flunked out of college. The medication made me incredibly lethargic. I did this medication cycle off and on for the next five years.

I was finally diagnosed with Autism Spectrum Disorder.

I was elated to be autistic. Getting the right diagnosis gave me freedom to be myself. Unfortunately, it can often be difficult to get the right diagnosis. This can be especially true for those of us who are higher functioning. We can appear to have OCD, anxiety, depression and various other disorders.

My oldest daughter was labeled a “behavior problem” until we found the right doctor who specialized in evaluating and diagnosing children with autism. That is why it is so important to find the right doctor and medical care. Here is my disclaimer, I am not a doctor. I am only giving you information that I, myself, have experienced firsthand. My best advice is to find a “developmental” pediatrician. To this day, my daughters still see the developmental pediatrician once a year. He is able to keep track of them as they get older. He is also a wonderful resource.

There have been many advances in the field of autism in the past few decades. When I was a teenager, high functioning autism was still not diagnosed. Finding the right diagnosis can be liberating. If you feel that you are not being heard, keep searching.

Whatever the outcome embrace the person, not the diagnosis.

If you liked this essay, you may also like:

• What Freed My Son of Wanting to Be Typical?
• You’re So Normal
• Autism: To Tell or Not to Tell?
• 7 Postive Ways to Do Autism Awareness