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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 have minor concerns about the advice given by the psychiatrist, but I'll hold back since I don't have the full picture and you're already doing the important things, like getting her speech and occupational therapy. The symptomatic improvement is heartening, and I can only hope it persists, And I do agree that this is more likely to be autism than ADHD (not that the two are mutually exclusive), and the presentation can be rather different in girls, which makes diagnosis unfortunately challenging.
I wish I had more specific advice to give in regards to where to seek therapy, but it's so US-dependent I wouldn't know where to start. I'd hope your psychiatrist and psychologist could point you the right way. In the meantime, please take care of yourself, I hope the dizziness is transient, but you've evidently been under an immense amount of pressure for a while. You might need a moment to breathe, and accept that some real hurdles have been overcome.
While I don't think a formal diagnosis is strictly necessary to absolve you of guilt, it's still a practically useful thing! Less judgement, not that you deserved any, and more access to resources at the least. I hope this keeps working out.
I think the diagnosis will help some. Every time I commented here about A, I would always receive some well-meaning, "What punishments are you using when A acts out?" like I've never considered trying the normal parental levers of behavioral adjustment. It's also been challenging to get a babysitter but now we can use the magic words and hire someone twice as expensive but who knows what they're in for.
It's funny though how some people are. My mother called me and the first words were, "Are you sure it was a doctor who diagnosed her? Did they test her for at least 8 hours?" She kept grilling me about what happened before she was satisfied that it was a genuine diagnosis and then she didn't seem to have much to say.
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