ChangesAheadI was working on a post about how miserable I am when the temperature goes above 75°F, but have decided to table it until next week. Don’t get me wrong, I still find it nigh impossible to function in the heat, I’ve just found a topic that’s worth the Herculean effort this sweltering (to me – don’t judge) this Thursday afternoon.

I wrote last week about the pending re-evaluations for the boys. We won’t have the written reports for a month or so, but Sparky and I met with the neuropsychologist yesterday and were blown away. In addition to autism, he had a new diagnosis to add for each boy. Zoo Keeper has nonverbal learning disorder and BamBam has ADHD. I made a joke with that one about it being no wonder I’m so tired all the time, but rather than taking it as I intended, he said, “Well, yeah.” Then he told us that in a room of 100 five-year-olds, BamBam would be one of four who were unable to control their impulses. The other 96 would all have the ability to focus and their parents wouldn’t have to follow them around reminding them not to touch this or that and then taking it away from them when they touched it anyway.

But neither of those things was a big surprise for Sparky and me. What struck me so hard was Zoo Keeper’s IQ. I knew he was hella smart, but his verbal ability goes beyond that. The kid is gifted. His processing speed, however, is in the 9th percentile. Essentially, that means he’s brilliant, but he can’t get get it out. The doctor said that his IQ is probably even higher than it measured because the processing speed drags the score down.

And the kicker is what all this means for school. We were thrilled when Zoo Keeper’s teacher told us that he finished the year beyond what’s expected of a first grader in reading. Turns out that’s not actually appropriate for him. That’s him not accessing learning. The discrepancy between his testing and his performance in school is so big that, by the district’s own standards, he clearly qualifies for services in that area. I had no idea.

The report for each boy will contain recommendations that will knock their IEPs on their heads. That metaphor looks weird in the plural like that, but I’m sticking with it. So, we’ll have a lot to talk to the school about in September. Because being just on track for reading in kindergarten/first grade for someone with Zoo Keeper’s ability means that he’ll be falling behind by the time third grade rolls around and they start reading to learn rather than learning to read. So it’s essential to address this now. And I’m so glad we’ll have the report, with the numbers in a format that fits the school’s language, to help us make sure it happens.

In addition to the benefit for the boys, the evaluation results got me thinking about my own potential. When the doctor talked about Zoo Keeper’s processing speed, it was like he was talking about me. People have been asking me what having an autism diagnosis has done for me. My answer so far has been mostly about how it’s helped me to accept myself as I am and to put past events into perspective, which helps me move past them, but I often tack on something about how knowing that I have legitimate difficulties with executive functions (like processing speed) will help me learn to compensate.

Except it doesn’t. I was already compensating, which is how I pass for a neurotypical person in a world that is actually incredibly difficult for me to navigate. Knowing it makes it more real, which is important, but it also makes it real. It solidifies for me the fact that I’ve spent 45 years working really, really hard just to keep up. That’s why I’m always out of breath; why I’m always tired. What it doesn’t do is offer a solution.

The counselor who diagnosed me last December was a regular therapist, not a neuropsychologist. While she did determine that I am autistic, getting even a letter from her to that effect was difficult. The only test she gave me was the GADS, which she did verbally and all I received was my numerical score: 100. That tells me that I’m “likely” autistic, which was the verbiage of the letter she finally wrote for me, but doesn’t give me any meaningful information.

I thought that was the best I could do. I thought that was all there was to do for an adult. But now I realize I can have more. I can have an evaluation like the boys had. I can have my IQ measured and have tests to determine where my specific deficits lie. And I can probably find someone to help me work on them.

Plan in to action written in chalk on a blackboardThat’s my new answer to the question of why I want a diagnosis. I’ve accepted my social quirks and I’m actually fine with them. More fine than I thought I was in fact. What I want to work on is executive functioning. I’ve been thinking a lot about how I can help my sons with their executive functioning skills when I don’t have a handle on them myself. Also, I believe working on those skills is the key to breaking open my abilities as a writer. Ever since my diagnosis I’ve been terrified by the idea that my difficulty looking at the big picture, slow processing speed, and organizational issues would prevent me from ever completing a novel. I’ve been too scared to really think about it beyond dipping my toe in and telling myself I’ll just power through, all the while hearing the faint chanting of my inner critic that my crowbar approach will show-through.

I tried to talk to the counselor who diagnosed me about it at one point, but it was clear she had no idea what I was talking about. But now that I know there’s another type of evaluation available, and I have two referral names from the boys’ doctor, I have hope. I’ve heard back from one of them already and was told the evaluations “typically include measures of: IQ, problem solving, attention and executive functioning (organization, processing speed, working memory), language, memory, sensorimotor skills, social skills, emotional functioning, personality, coping skills, and other domains as needed.” Perfect!

My plan is to explore my deficits with a neuropsychologist and figure out how to overcome them, not just compensate. That’s my plan and I can’t wait to get started.