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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.
If it helps, every non-alty I've ever met who has an autistic child has had that child misdiagnosed as ADHD. It's one of several reasons I continue to believe childhood ADHD diagnoses should be prohibited by law(you can just have a kid who gets bad grades and grows up to work in a warehouse. Sometimes thems the breaks.). Several of them had their eventual autism diagnoses made on the basis of 'duh. Did the doctor who made the diagnosis actually meet the kid?'
The Onion: American Psychiatric Association Adds ‘Obsessive Categorization Of Mental Conditions’ To ‘DSM-5’
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Uh.. Just because autism in children gets confused with childhood ADHD doesn't mean that the latter doesn't exist or isn't worth diagnosing.* There is still such a thing as hyperactivity or inattention beyond the "normal" range that responds well to medication, and waiting till adulthood for a diagnosis means that a lot of social/academic damage is unnecessarily allowed to happen. Being dumb is not the same as having ADHD, even if dumb people tend to be impulsive and lack focus. It is also possible to be smart and lack focus, I say, looking at no one in particular.
(This isn't the same kind of argument as for puberty blockers, in case someone leaps to pattern matching. Stimulants are rather safe drugs, the only minor downside might be slightly reduced growth rates.)
Most people diagnosed in adulthood have had the condition since childhood. It's not like schizophrenia where it can just "turn up" after you're 18. I know that's the case for me, and I'd have been way better off if someone had noticed when I was a child and put me before a shrink.
*ADHD and autism can coexist.
Be that as it may, doctors are not responsible enough to diagnose adhd in children, sorry. Maybe theres perfectly legible capitalist explanations that don’t apply in the nhs. Sure, willing to believe that. But in the USA, almost literally every child with some other developmental disorder was first diagnosed with adhd, and it just isn’t an emergency to have someone grow up to work in a warehouse instead of a hedge fund. We produce too many elites anyways. If your kid cant do school without accommodations maybe they just deserve bad grades?
While I do agree that ADHD in children is probably over diagnosed, it's worse in adults because of people motivated by the diagnosis.
This also applies to children to some extent - parents looking for an easy answer, medications, etc.
They can then shop around until they get the answer they want.
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I request citations.
An ADHD diagnosis is, in fact, significantly lower here, and much harder to get. Unfortunately, as far as I can tell, that's because the NHS is operating far beyond capacity and it can take up to 10 years to even go from a referral to seeing a specialist for assessment. That's the worst case I've heard of, though 4-5 years is typical for schoolchildren. Not quite ideal either way.
I would rather my kids don't work in a warehouse instead of a better job, as would most people, and probably you. It's a false dichotomy anyway, there is no medication on Earth that would take someone from being only suitable for warehouse labor to being a quant, sadly.
That is more of an argument for cracking down on stupid and endless expansion of special accommodations.
Hell, I've never asked for special treatment because of my ADHD, even when it was specifically offered (they even suggested my own office, an impossible miracle in the NHS at my level). I expect that my medication makes me competitive with my peers, including in academics, and I don't want handholding in the process. My problems can be solved for <$100 a month, were I paying for the meds myself. I am all for exams being a level playing field and and a test of competence within certain constraints. If someone is genuinely worse at their job because of a disability, that sucks, but there's only so much society can do, or that I think it should do.
Besides, I disagree with this whole line of reasoning. Too much congestion on the highway? Clearly we have an over production of cars, and we should stop mechanics from using wrenches or people from changing their motor oil. There are far better ways of solving the problems of elite overproduction, should it need solving.
ADHD is real, in the sense that it is a useful term for a problem that exists in a spectra. So does blood pressure. Treating both does real good even if there's no firm line in the sand between 5th and 6th percentile levels of conscientiousness, or between 140/90 and 141/90 average BP readings.
Aren't the stimulants used to treat it at least moderately effective in non-diagnosed individuals at improving concentration and attentiveness? I have at least heard anecdotes of college kids using those off-label for performance reasons (studying). I assume the accomodations (extra time on tests) are moderately too.
Do you have any thoughts on where we draw the moral line for "you get to use these, you over here don't"? To use an analogy, if we had drugs that made kids grow taller, I don't see a problem with at least making them available to, say, ones predicted to end up under 5 feet, but there would be a huge moral hazard of 6'5" kids whose parents claim they're still "short" because they really want them to play in the NBA. I don't have an answer here, either.
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Check out this video. https://youtube.com/watch?v=SGaQw5HyX38 Some parts of it are a bit boring so if you feel like skipping it just jump forwards instead. There is a lot of modern research / experiments on autism on the internet. Other simple remedies are things like limiting carbs, folinic acid, fixing sulfur metabolism (molybden) and anything that boosts mitocondrial function.
I discussed going into the rabbit hole here: https://www.themotte.org/post/2273/wellness-wednesday-for-july-23-2025/350068?context=8#context
She is currently seeing a psychiatrist who's a bit more into that sort of cutting edge between the future and woo. I'm cautious but going to keep with it for a year unless she recommends something that seems obviously dangerous.
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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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I hope that having a label helps things to improve, and that things do continue to improve. That's interesting about the supplements helping.
I have three children, and my older daughter (Z, 6) is spectrum-y. It doesn't currently seem to matter all that much -- she's extremely verbal and likes stereotypical girl things, so doesn't stand out all that much. There was a highly verbal child in the intensive autism program I sometimes teach, and I though "wow, he sounds exactly like Z!" It's hard for me to pinpoint exactly why. It's also hard to describe why without myself sounding like a bad mother, and using term like "blathering." I thought that maybe kids are just like that, but my other kids are not like that.
I teach art professionally, so I thought that maybe I would teach her art. Mostly she wants me to give her a piece of paper and a pen, and then cuts it up into hundreds of tiny shapes, and draws things for her dolls on them, and leaves piles of tiny bits of paper all over the place, over and over again. Sometimes I try to teach her something specific, and she just kind of turns away and goes to work on the snipping and drawing, in a way that feels more like how I experience teaching the autism groups. If I give her a little handmade blank booklet, she'll replicate a Disney storybook, then another, then another, until I refuse to give any more paper. Sometimes she does things at school like hiding under a table rather than putting on her coat, or refusing to leave with us because the teacher is otherwise occupied and unable to dismiss her officially.
When Z was a baby, she had a terrible time with bottles, and my husband had to drive her to my job on my lunch break to breastfeed her in the car. She screamed and screamed, and had a terrible time learning to sleep. I wondered how the human race had managed to endure up to the present day. If she woke up, she would be up for two hours, and shriek at top volume if put back to bed.
Z likes to run in circles around the center of the house for over half an hour at a time, up to hours sometimes, especially when she was younger.
My other children are not like this. My second child is getting near four and can't talk properly, but is very socially warm.
I dunno, children are confusing.
Oh, yeah. A does this. And when she does art, unless she's told to do something specific for an assignment, she will draw a heart with the word "Love" on it every time. Thousands of hearts with "Love" on them and I try to treat each one as special as the first. Thousands of hearts on shreds of paper no larger than an inch across. Scattered around her bedroom.
I think there are probably lots of kids who are "on the specturm" in a sense. But they don't necessarily need to be diagnosed, treated, etc unless it's hampering their life in some way. With A, she wasn't learning in school because she was spending about 20% of instructional time in the school office freaking out. She's someone who needed a diagnosis, support, etc.
I see a lot of A's traits in myself, but I got through school ok because it was easy for me. I didn't make friends though. I could see a case for young-me getting diagnosed and in some kind of therapy to learn how to form human friendships. But I personally was fine without friends? I felt weird and different, which aren't great feelings to have as a kid. But I don't think I honestly craved friendship the way most kids do.
It's only really a disorder if it's hampering your ability to live a normal life. Given Z's age, it's really up to you to decide if Z is happy or if Z needs help and to pursue a diagnosis.
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If you ever desire to dig really deep into the realm of medical treatment of autism, I highly recommend you check out a blog called EpiphanyASD, written by a German father of a severely autistic boy whom he has been able to treat to the point of being moderately functional.
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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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