How Autism Came into My Life: Part Two

Part Two: The Diagnosis

Wouldn’t it be nice if you could tell a mental health professional – “Hey, something’s wrong. Can we figure it out, please?”–and actually get help?

Yeah, and if only milk chocolate sprouted from trees.

Did his traumatic birth play a role in developing autism? Or is it just a genetic role of the dice?

After a few months of my son getting sent home from daycare for hitting teachers, kids, and throwing chairs, I reached out to my benefits representative and asked for mental health treatment. During those twelves months, we saw three different therapists and the most anyone would say is that they thought he had Oppositional Defiance Disorder. They gave me a plan for putting him in timeout and ignoring his behaviors, but nothing worked. I also repeatedly spoke to my son’s pediatrician who vaguely said that he could give me a referral for more therapy but there was no follow through.

And then came the breaking point and that fateful phone call with my aunt. We talked on a Friday night. I’d had to leave work early yet again and the pressure going through all of this alone made me an emotional wreck. First thing Monday morning, I reached out to my benefits person again. I said that I was in crisis and my son needed to see a psychiatrist. Miraculously, she got us into to see a child psychiatrist the very next day.

The child psychiatrist observed my son’s behavior, listened to my story about what had been going on for the past year and said that he’d order Parent Child Interaction Therapy because there were clearly behavioral issues. I remember saying to him (and feeling frustrated because therapy so far had been a waste of time and money)

“What is your gut feeling?” to which he said, “Autism”.

Now, here’s where I get mad.

Having said he thought my son had autism, the psychiatrist gave us a referral for PCIT and sent us on our way. By the time I drove the thirty miles back to my house, I had questions. If it’s autism, then why not diagnose my son? I’d done enough reading at that point to know that once my son was diagnosed with autism, there were programs that could help us. So I emailed the doctor and asked if he could give us a diagnosis. He said no, that I would have to take him to Autism Clinic and that I’d have to work all of that out myself. PS: It’s a $1000 test so you’ll have to get approval from your insurance to make sure you’re covered.

I was really frustrated by that experience. I’d cried in front of this man, explained my crisis, and he made no real effort to help address the ACTUAL problem. You don’t treat cancer by taking aspirin and getting some sleep, right? So how was I supposed to treat autism without the appropriate therapy? I was venting all of this to a co-worker a day later when he said that system is intentionally set up to be difficult to weed out the people who don’t really want help. If that’s true, it’s a crime. It shouldn’t have been a year of telling therapists and a psychiatrist that something was wrong and getting nowhere. That was a wasted year when my son could have been getting the appropriate help and maybe our lives would be different today as a result.

The same day I exchanged emails with the unhelpful psychiatrist, I called the Autism Clinic. There was, of course, a six-month waiting list but because my son was only four-years-old, they put him at the top of the list. (The earlier you get an autism diagnosis, the more beneficial the treatment can be.) In the meantime, I contacted my school district because I was told by a few different people that the public school system could test my son and also potentially provide special education preschool. Daycare was very much an issue and I was looking for anything that would help me keep my job. No job–no medical insurance–no treatment.

I think it took a month to get him in for the test to achieve a diagnosis. I was able to get him in that quickly because I was a real pain in the ass to the woman who did the scheduling. I literally called her every other day until there as an opening and the psychologist could see him. Fun fact: Psychologists diagnosis autism. Psychiatrists prescribe medication. In the meantime, we also did testing with the school district who could only offer part-time community preschool. There was an issue with busing and no daycare in the area so I could not use what resources they offered.

My father was discharged from the army for a personality disorder. In the 60s, there was far less known about high functioning autism. There is commonly believed to be genetic component to the disease.

During this hell, I was spending about $1200 a month and shuffling my son between multiple daycares. When we saw the psychologist for test, I told her about my struggle and asked if she had any suggestions or knew of any daycares that took kids with special needs. She offered no help in that area, but was able to diagnose him with autism after a three-hour-long test. Two weeks later, I returned to her office and received a hard copy of his test results. I asked her to explain what the papers meant and she replied, “Oh, just read the paragraphs.” The psychologist refused to help me understand my son’s diagnosis and what his future would look like. Why? I have no idea. I assume she just wanted to move on to the next appointment. In any event, I had work to do and no time to waste. She told me that because of his age, he’d qualify for an early intervention program where he’d receive Applied Behavioral Analysis therapy and she’d send me an email to put me in touch with their coordinator.

That email never came. And so began the battle to get my son treatment.

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