I 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.
That’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.
I don’t do hot either. Right about 60 degrees with low humidity is a perfect outdoor day.
This is fascinating, but I’m wondering exactly what some of those things mean. Like, what does processing speed mean? What does an intelligence test measure? Because I would think that some of the other things, like processing speed, problem solving, etc. would factor into intelligence. I know I majored in psychology so I should know some of this, but it was a really long time ago and quite possibly some definitions have changed.
We could totally share living space, babe!
I get processing speed and working memory mixed up, but they’re related anyway, so I’ll just go with it. It’s like when my mom spells medical words at me, and I do mean AT me because it’s like each letter is a ball she’s tossing in my direction. I can catch the first two, maybe three, but to catch the forth I’ve got to let go of one of the others. By the time she’s thrown me the last letter, I’m only holding on to a few and I have no idea what the word is even if I would know it well if I saw it on the page. I think the working memory part is how many letters I can hold in my brain at a time and the processing speed is how fast I can process the letters for longer-term storage, which would leave space for more letters in my working memory.
Those both can factor into the measure of intelligence, but not necessarily actual intelligence. I have fantastic reading comprehension, but I’m a slow reader because when I try to speed up, I can’t convert the words to longer-term memory fast enough to keep up with the new ones coming in and then I can’t remember anything I’ve read on the page. But, given enough time, I can know the paragraph cold only having read it once.
There were so many tests he was telling us about that they all sort of run together for me and I couldn’t tell you which one was for what. The one for processing speed had to do with how fast Zoo Keeper could recognize which shapes were duplicated in two columns or something like that. It was times, so it had to do with how many he could get right in the given time.
And there was one for BamBam for impulse control that had to do with answering yes/no questions about shapes where your brain would have the impulse to say yes when the answer was no. The test was measuring whether he could control the impulse to say yes. It was fascinating!
Brains are so complicated, aren’t they? Now I’m thinking about how the different people in my family process – for instance, everyone thought my father was “slow,” when actually he is very, very intelligent, but probably has a slow processing speed. And then my husband is very quick, but probably would score lower on understanding others’ emotions.
I love how your understanding of your own issues will help you help your boys with theirs. That is so true in so many ways!
p.s. of course you can write a novel. You use words exceptionally well. It might take you longer than some people, but so what?
Wow, this is a lot for you to take in. It’s a lot for ANYBODY to take in, but how wonderful that you found a doctor who can help you identify and work with these issues.
My son had trouble in kindergarten – his teacher scared him and she would call me for things like him coloring an apple purple instead of red. His teacher brought in tutors to work with him, which made him feel stupid. We moved to Cincinnati after that, and Jonathan had a wonderful first grade teacher who was quiet and low key – a comforting and reassuring presence in comparison to his kindergarten teacher (who, thank goodness, retired the year we moved.)
Jonathan would get very frustrated when they started new types of math – fractions, for example – but after a week or so he always had the topic nailed. It wasn’t until he took the Otis-Lennon School Ability test in 6th grade that we discovered he was a cognitive learner. His IQ was off the charts – he scored higher on the O-L test than anyone in the school – and we were called in for several meetings so we could learn more about what cognitive learning was and how it would affect Jonathan’s future in school.
Once he got that diagnosis, Jonathan never got anything less than an A. He drove himself to achieve and he succeeded. Now, looking back on his school years, Jonathan is convinced he had Asbergers, and he may be right. In fact, after reading up on it, my husband thinks he might have had Asbergers, too. They got by without knowing – or suspecting – they had a “syndrome” but I wonder how different school might have been for them if they’d had professional support.
Anyway, I know this isn’t helpful to you, but your post just brought all these memories back. I don’t think raising kids is ever easy, but you deserve kudos for being such a supportive advocate for the boys. I hope I’ll get to meet them one day!
P.S. About your heat issues, just wait until you hit menopause! I didn’t have as much trouble with hot flashes and night sweats as some of my friends, but it was bad enough. I still can’t sleep without a fan blowing on me, even if the air conditioning is on. I’ll still take heat over below zero days, but only because I can cool off faster than I can warm up!
That will be so powerful for your boys to see you gather all the data you can, seek support with executive functioning, and use visible coping strategies. What a model for them to grow up with! Damn, lady, you’re pretty courageous and fabulous. Smooches!