I thought it'd be easy. After all, if somebody has a heart problem they go to a heart specialist. It made perfect sense to me, then, that we needed to go to an autism specialist. It was not that easy.
First we need to actually find a specialist. I checked the phone book. Nothing. I checked with our pediatrician. She thought there was some group at Newington Children's Hospital so I called...there was a nine month to one year waiting list. I went back to the school and asked for a list of professionals who could help us and received a two page list! Joy! I started at the top and thought it'd be great to interview some professionals and figure out which one would be a good fit for our needs. The calls went something like this:
Me: "Hi. I'm the parent of a child who may have autism. Can you help me? I'm looking for a definite diagnosis as well as a plan for what we need to do to help her."
Professional 1 (after asking a few questions): "It sounds like it's just a problem with her neurons. Give it some time and they'll all start working fine. I wouldn't worry."
Professional 2 (excitedly) : "Autism? Cool! I'd love to see a kid with autism!"
Professional 3: "You can send me the reports you have and I'll write you a report so you'll have all the information in one place."
And so it went. In the meantime, I was reading. I read one book that was written by an Occupational Therapist. It was quite technical. When I finished it I told my husband that I couldn't figure out much but it seemed like we just needed to buy her a swing. Yeah. Once I said it out loud it just didn't sound right.
Finally, I went back to the school and some kind soul pointed me in the direction of an actual autism specialist. I made a call and by some incredible stroke of luck I was able to get an appointment. Interestingly, the group of professionals from Newington Children's Children Hospital had broken up so there was no long waiting list. The hitch? It was $1200 for the evaluation which was not easily accessible to us...it was 1995 after all. Now I was on a mission.
I called our insurance company who told me there was no reason to see an autism specialist. There were child psychologists that they would cover. It was finally agreed upon that we would take RJC to the insurance company's social worker as a "first step." I figured there was time before the appointment I had already made and if this would help get the evaluation paid for I'd jump through a few hoops. I sent this social worker all the paperwork and made an appointment. When we sat down, she told me quite happily that RJC was probably not autistic because she was a girl and didn't seem to be mentally retarded. She took down her big ol' diagnosis book and showed me that 75% of those diagnosed are boys, and most have low IQs. I asked if it was possible that she fell into the 25% that were girls (duh) and pointed out that we did not know her IQ. She sighed and grudgingly agreed that she could, maybe, possibly be autistic. She agreed to send us on to the next step - the insurance company's Child Psychologist.
If I detailed all of the ridiculousness about that appointment it'd be a novel in and of itself. Suffice to say that RJC took one look at the tiny room and this large stranger and shimmied up on the top of his file cabinet...and perched. That was the better part of the appointment. He told me we just needed to give her Ritalin "to make our lives easier" and there really wasn't much to be done anyway. I was polite and pointed out that she was all of three years old and we weren't really looking for medication. Just wanted to get her to an autism specialist and would he please put in the referral. He refused. He said there was no point. It did not seem to matter what I said - he refused. I got RJC down from the file cabinet and we left.
The calls began. Little did I know that this would just be the beginning of my phone call advocacy! I believe that I finally just wore them down. Without getting into detail, the end result of my many phone calls and pleadings was that the school would pay for half of the evaluation and our medical insurance would pay for the other half. RJC was three and a half years old at this point. It had taken us a year and a half just to get to the point where we could meet with a professional who could not only give us a diagnosis but hopefully...a plan.
The day of the evaluation I thought it'd be a great relief to have an actual diagnosis. On a completely selfish note I was worried about my parenting skills. More accurately, what appeared to be a lack of parenting skills. More importantly, though, I wanted a plan. I wanted to know what I needed to do in order to be able to communicate with my girl. It was so frustrating on a day-to-day basis to know she wanted something, or felt something, but could not tell us. I imagined that as frustrated as we were, her frustration was much more than ours, and that was very painful to us. We also needed to have lives that did not include hourly tantrums. Getting through a day was difficult and exhausting. Activities that other families did with ease were an incredible challenge to us. Visiting friends and family was really not an option as her behavior was so out of control we were always worried about broken toys or, worse, broken expensive knick knacks! The evaluation was long and I was surprised and pleased that RJC was relatively cooperative. Near the end of the third hour or so, the specialist called us over and told us that he would be writing a comprehensive report with an autism diagnosis and that this report would include steps we should take for treatment.
Wow. Finally. I wasn't as relieved as I expected though. It was more...overwhelming. The diagnosis was actually real. We had a child with autism. We didn't know any other family with a child with autism. In fact, we still didn't know what this diagnosis meant to our daughter or to our family. I did, however, finally have a professional who was about to give me a plan. In a weird sort of way, now that we had an actual diagnosis...I had hope.
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