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It's Autism
I've written here before about my daughter who been a challenge to raise.
Since my last comments, I had connected with a Psychiatrist who did some blood work and recommended we give A some supplements. Vitamin D, P5P, L-Methionine. We've been at it for almost two months now and I think there has been some change in a positive direction. I've been trying to keep a record going of the behaviors that are most odd to us:
Here is the when we first started the supplements:
And here is where I would put her today:
We have some days where aggressiveness trends back up to a 4 or 5, but the trigger is often she does something rude, doesn't realize it's rude, gets mad at a sibling for saying she did something rude, and then lashes out. And this is more of a weekly occurrence than a daily occurrence. It feels like progress to me.
Well, we had a 1 year follow up with the Neuropsychologist who diagnosed her with ADHD, we told her about how we pulled A from school due to disruptive behaviors that kept her in the school office for hours every day, we emphasized how weird A's understanding of jokes and speech can be, and she agreed to test her for Autism.
She had a couple days of testing. Her ADHD symptoms have improved somewhat since last year. Her verbal IQ increased about 15 points to a normal range now. There's a test where the kid has to avoid kicking a soccerball before a signal is given and she did better than the average kid, instead of worse like you'd expect from ADHD. However, not knowing if she was giving the correct answer or behaving the correct way was driving A up a wall and she threw a fit at some point, so not every test was completed.
A week later, Dr. [redacted] gave us the results. Our daughter has learned human behavior like a Miss. Manners textbook but has definite signs of Autism on display during an ADOS-2 test. Repeating words and phrases over and over again for minutes, bumping her hands together to expel nervous energy, talking super fast then slow, not really conversing with Dr. [redacted] but rather having a one-sided conversation. Couldn't describe what made a friend different from someone else, what the experience of having an emotion is like, etc.
So now she needs to up her speech therapy to 1 hour a week, get some kind of occupational therapy, and maybe join some sort of support group with similar people.
Meanwhile I feel like I've been gaslit for the last five years.
She was evaluated for Autism when she was 2 and couldn't talk. They said there weren't any signs. Last year, with this same Neuropsychologist, they didn't give her the ADOS-2 test but gave her some other kind of test and said she didn't show signs of Autism. For the last year I've been going crazy, reading books on BPD in children (doesn't seem to exist but people will certainly sell you books on it), books on ADHD, dyslexia, nutrient deficiencies, ODD, etc. We've tried high carb low fat diets, elimination diets, supplements, you name it. And all along it was Autism, which honestly I suspected since she was 7 months old and made her first pile. (The second she learned to crawl, she gathered all her toys into one place and lay on them like a dragon guarding a hoard. The second she learned to walk, she started eloping at parks like being able to find and return to her mother wasn't a consideration for her.)
Meanwhile, now that I'm putting "Autism" in the search bar, it turns out there's all kinds of official sounding terminology for all the weird behavior she's been doing. It even explains her writing numbers and letters backwards. But before this week I ignored results with Autism, because I'd been told on two separate occasions that she doesn't have it.
It feels like the weight of the world has been lifted from me. The responsibility of being the parent of a weird kid has been lifted from me. There's a name. It's not my parenting style. It's not my fault.
The biggest head trip is how similar she is to me, if I wasn't a genius. I didn't get frustrated in school, reading came easy to me, I learned figures of speech like I learned the months of the year. But the social stuff, and repeating my own words, and the one-sidedness to my speech. That is a lot like me. A lot of things my daughter did, my mom would say, "That's just what kids are like," and "I think the school is being ridiculous, sending her to the office so much," when it was for things like chasing a teacher around the classroom. Maybe that's just what her kids are like (except I was better behaved at school, partly because I was in gifted classes, partly because I finished everything ahead of time and was allowed to read books most of class).
But I also feel lost in the woods without a map. I have to sign her up for therapies. Where do I start? I don't know. We're going to see if this diagnosis means the school can take her back. But we're also concerned about what that would look like. It's all a lot.
I've also started having dizzy spells since hearing the results. Don't know if that's related but it started a couple hours after the appointment. So that's weird. Overwhelming stress transferring from one bucket to another in an inefficient fashion.
I am happy that you finally found out the problem, and sympathize with how difficult it was to come to the conclusion. For one thing, autism seems difficult to detect in girls. For another, all of medicine is like this. My grandma went to a nurse practitioner for pain in her hands, and told that it was not carpal tunnel. Turns out it was. My mom has been around the block about pain in her foot; first told she needs to go to a foot doctor, then the foot doctor uncaringly told her it was related to back pain, then the back doctor tells her that he doesn't know if he can help her but try this medicine and stop bothering him, then she goes back to a doctor for foot pain and finally is told that it's probably unrelated to her back and she needs to see an actual foot specialist (hopefully not the same one). Will they finally discover the cause? Who knows. I just feel bad for her because it's been difficult for her to sleep at night for a while due to the pain. It would probably feel worse if it was your own offspring that you saw this happening to, intense pressure to get them sorted out but being unable to do so because medicine is a fucking nightmare realm of people who don't know and don't actually care and need you to book several dozen expensive appointments that are all weeks or months apart for every single question that needs to be asked.
Related: it is helpful to hear about a confirmed case of autism. I see lots of stuff get called autism, even just differences in personality or being selfish in a conversation or being interested in a thing. It's wrong to do it, I think, though I used to call things like that autism, too. My boss makes a big deal about rising cases of autism, and keeps blaming the vaccines. The problem is that there are just so many possible causes because so much has changed in the last 100 years. Maybe some portion of it is just finally getting diagnosed instead of being mislabeled as "That's just what kids are like," maybe some portion of it is actually being overdiagnosed when they don't actually have it, maybe there's more TV, maybe people's genetics suck from having kids too late, maybe lack of community is affecting people in ways we don't know about, etc, etc...
But I feel your pain, and hope things go well for your daughter. Good work getting it figured out.
If it's of interest to you, I think the things that most made the neuropsychologist test for Autism were the following anecdotes:
Several times now, when I'm driving in the car, one kid will ask me a question. I will answer the question. A will then say, "Mom! I wasn't the one who asked you the question, C asked you the question." And my response is befuddlement, because I didn't use A's name, and I'm looking at the road not her, so why did she think I was talking to her?
She gets scared by figures of speech. "Make your head explode," made her scream and cry for a half hour. "I wish I could pack you in my suitcase and bring you back with me," made her run to her room and cry in her bed.
Funny movies scare her. George of the Jungle disturbed her, Pink Panther was scary, it's all scary to her.
She learned one knock knock joke in Kindergarten at a Pool Party.
"Knock Knock"
"Who's there?"
"Splash"
"Splash who?"
"Splash you!"
It's the kind of joke that only works in a swimming pool. It's the only joke she used for the next two years. She would repeat it everywhere. Over and over again.
However, on examinations, A would give the correct answers to, "What word do you use when you greet someone?" "When you talk with someone, where should you look?"
Z also has trouble figuring out who we're talking to, even when we're all in the room together, and we're clearly looking at and turned towards one daughter or the other. Her little sister can keep track easily enough.
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