Oh, I’m not saying that doesn’t work for some kids. Or that removing gluten could help for reasons that we don’t understand.
What I’m doing is commenting on the nature of what “autism” is, at least in the context of today’s diagnostic means.
Basically if you fulfill a certain set of critera, you’re autistic. The actual underlying root cause isn’t really what matters, because we don’t understand enough about what causes it. It’s basically saying “you have a certain constellation of symptoms”, more than “you have this particular malady”. They’re not diagnosing the cause of the constellation of symptoms, hence the reason that removing gluten does work for some autistic kids.
And I’m in agreement with you- indiscriminate approaches like removing gluten, etc… are basically shots in the dark; without knowing what the root cause is, you might as well hire a witch doctor or exorcist.
Sort of. Autism is classified as a neurodevelopmental disorder, meaning the symptoms must be present from childhood. I believe the cause is assumed to be biological/genetic. Austism is very heritable. The most significant predictive factor is family history. Another significant factor is premature birth/birth complications. At the same time, it’s not like you can do a brain scan or a blood test for autism. There’s no autism gene. So there’s truth in what you say. It’s entirely possible for someone to have similar symptoms for some other reason.
It’s like, many people these days may exhibit symptoms of ADHD, because of the way our culture inundates us with technology and a huge list of constant demands.
Now some have argued that some ADHD is the result of childhood trauma. Not an argument I find real compelling, but it does point to the fact that a lot of things can happen in childhood that have overlapping symptoms and misdiagnosis is always possible.
I’ve had ADHD as long as I remember, far before screens were ubiquitous, and when I’m taking a break from screens to focus on what’s in front of me, I still find myself lost in thought. It just seems to be my default.
I’ve heard it argued that autism and ADHD are two different manifestations of the same thing. What you’re describing - hyperfixation on a thing of interest to the exclusion of other things - is also characteristic of ADHD. The main difference is that people with ADHD tend to lose interest and move onto something else after a relatively short period of time.
I’m curious what you think about the theory that these are not really two different disorders. Do you know of any research supporting this claim?
I’m skeptical of the claim myself, but I acknowledge there’s some symptom overlap. And though it’s not explicit in the DSM, people with ADHD also frequently have sensory and emotion regulation issues.
Yes. My teachers reported that I was prone to behaviors that I now recognize as signs of ADHD at least from the early 1980s, and I guarantee you that I wasn’t distracted by smartphones at the time.
(One teacher insisted I must have epilepsy, presumably because she had a child with it and didn’t know what else to label it as.)
Mostly what I remember was being bored at school because it never challenged me. These days, I can’t stand in-person learning or having to learn from a video because everything is so slow. It’s like torture. Please just give it to me to read, so that I can learn it at my own pace. I think back to my younger self and I feel so bad for him.
I referenced this thread in the contemporaneous Pit thread on species when mentioning “Why Fish Don’t Exist” and the following post about groups there has lots of parallels to neurodevelopmental and psychiatric labels and categories:
As does that article with the jargon dense reference to “transdiagnostic”.
I’m not sure functionally what we should be calling “disorder” … clinically looking alike? Responding to the same interventions in similar ways? Same root causes even though the presentations are very different? We tend to use the first in practice but probably the latter two are more meaningful and it is by now clear that we barely understand the interactions of the genes involved but that clearly the same root causes can have very divergent and overlapping presentations. It’s why I love using labels as tools but use them with lots of caveats as to the limits of their usefulness as tools.
I’m reminded of the relationship between dementia and Alzheimer’s. Dementia is the constellation of symptoms caused by Alzheimer’s, which is the neurological disease that in most cases of dementia, causes the symptoms. Autism is similar, in that right now, autism is the constellation, and we don’t know what the equivalent of Alzheimer’s is. And like dementia, there’s the possibility that it might be caused by more than one thing.
I wouldn’t be surprised if at some point in the future, we find out that there are two or three causes for what is today lumped in under “autism”. Or maybe that autism is more of an intersectional thing between two or three other neurodevelopmental disorders, and the severity of your symptoms are where you are on that Venn diagram, so to speak.
I think that’s the direction research is headed right now. If it’s not several different things, it at least seems to manifest through multiple pathways. Not a single gene, but multiple genes, and multiple ways for one or more of these genes to be switched on.
What fascinates me is, if I understand correctly, there’s not a simple neurological profile of autism. You can’t see it in the brain’s structure. For something that can affect someone so dramatically, you would think they would have a markedly different brain, but apparently not.
The way other things mimic autism reinforces, for me, the importance of differential diagnosis. One of the drawbacks of self-diagnosis is the exclusion of other possibilities. For example, a lot of the self-report tools people tend to use for self-diagnosis have been consistently shown to turn up false positives for social anxiety. Sometimes social problems are a result of social anxiety. And sometimes having social problems causes social anxiety. It’s a lot for a layperson to sort through on their own.
Some references that might be of interest to you and some personal thoughts to follow:
We identified seven loci shared by the disorders and five loci differentiating them. All five differentiating loci showed opposite allelic directions in the two disorders and significant associations with other traits, e.g., educational attainment, neuroticism and regional brain volume. Integration with brain transcriptome data identified and prioritized several significantly associated genes. The shared genomic fraction contributing to both disorders was strongly correlated with other psychiatric phenotypes, while the differentiating portion correlated most strongly with cognitive traits. Additional analyses revealed that individuals diagnosed with both ASD and ADHD are double-loaded with genetic predisposition for both disorders and show distinctive patterns of genetic association with other traits when compared to the ASD-only and ADHD-only subgroups.
And a less often appreciated aspect in the neurobiology, overlapping cerebellum variations:
And my own framework - I think the brain is a massive nonlinear system: chaos theory applies, in particular the bit about “attractor basins” … ASD, ADHD, etc., are common phenotypic stable states that many paths roll into. To no small degree they exist only as much as “fish” do.
Despite my personal relationship to autism, the phenotype is outside my area of study, though I do work on other projects with at least one of the senior authors on that paper.
This is an example of the power of genetics in trying to disentangle traits. ADHD and ASD are genetically related, but still distinct. That nicely corresponds to the clinical observation of frequent comorbidity.
Other possibilities from a genetic perspective are that different changes in the same genetic pathway can lead to similar outcomes. Your “attractor” analogy, it does not matter why this particular receptor is not responsive, the effect on behavior is the same. Perhaps not enough of them are made, or a particular subunit does not bind well to the neurotransmitter, or it binds too well, or there isn’t enough neurotransmitter, or, or, or…
Again, not a trait I work with, so just things I hear in journal clubs and such: the genetics of schizophrenia suggest that there might be separate disorders that result in similar symptoms, and we call it all schizophrenia.
Is this in any way like calling unexplained seizures epilepsy? I’m guessing seizures have a lot of potential causes?
I’ve had a few myself, 8 years apart. The last time, I had three grand mals in one day. We think a medicine I was taking, Wellbutrin, lowered my seizure threshold. Hard to test that hypothesis because I was removed from Wellbutrin and immediately given an anti-convulsant, which I’ve been taking since 2016. I haven’t had one since, but you know, why I haven’t had one is anyone’s guess.
I think for me, the part that’s most bedeviling is that there’s such variation. My son is both high functioning autistic to the point where he’s barely on the spectrum. Like what would have been called mild Aspergers a while back. He’s socially awkward, but not anti/unsocial at all. In fact, he’s quite social, even if he doesn’t always understand how to go about it. He’s also intellectually gifted, so that’s it’s own special-ed like considerations1
So much of the classical autistic stuff doesn’t apply to my son, or only tangentially applies, but he’s definitely not “normal” either. So it’s often hard to tease out what’s him being autistic, what’s him being an disdainful smart kid, and what’s him just being a typical teenager.
1 My mother spent the first 2/3 of her 30 year teaching career teaching early childhood special ed, and she made the comment that teaching my brother and I (both intellectually gifted as the schools put it) was far harder than teaching the actual SPED kids. Her contention was that gifted and talented education should be combined under special education so that it would both get more funding AND be taken more seriously by the government and school districts alike, because in many ways, if done right, G&T stuff was a form of special ed, just on the other end of the scale.
Probably, but that’s even further from areas I know anything about.
There seem to be multiple genetic changes that can lead to ASD, and quite possibly it is a cumulative effect. Simplified to the point of wrongness, but parallel to a DSM symptom count criteria: we see 20 different mutations in autistic people, but any 8 of those mutations are enough to lead to a diagnosis. So two different autistic people might have overlapping or completely different mutations causing the same disorder. Also, some people only have 3 of those mutations, but an autism inducing environment.
Through the history of psychology/psychiatry there has been a pattern of classifying things as mental health conditions (or whatever the offensive term of art is for that decade) until an organic cause is discovered, and then it becomes a medical disorder. I don’t have any great examples, but think about the division of dementia into Alzheimers, vascular, Lewy body, Parkinsons, etc.
Point of that tangent is that we (or perhaps people not in the US) will continue to learn more about ASD, and perhaps learn it really is a spectrum of severity of a single condition, or maybe that there is autism, and then autism+nonverbal, which is like a broken hand and a broken arm.
Wowzers. I haven’t been on here in an age, but I remember well when your twins were born. I’m so sorry to hear about Serena! And very happy to hear that her brother is doing so well. (I remember what you named him originally, but don’t know what he is called now, so sorry for the awkward construction there)
My framework is more the states the distributed dynamic network settles into, whether it gets there by way of divergent activity in the hippocampus, the amygdala, the cerebellum, myelination patterns, cortical, other, all. The timing of connecting activity, the internal models for behavior prediction and adaption, all of which play into attention mechanisms, are disturbed and find various nonstandard “basins” … Any node(s) of the dynamic network being nonstandard can knock the network out of its standard basin and have it then settle into a different stable state.
To me various altered regulation of attention mechanisms is a key deficit across the entire collection of ADHD and ASD … an earliest manifestation of autism (often able to be recognized only retrospectively) is decreased ability of split and joint attention … and when a nine to fifteen month old cannot share attention well with their caretakers, has nonstandard ways of dividing up attention resources, subsequent development goes down a nonstandard path …
No. ASD can be specified to a specific cause if one (infection, teratogen, specific syndrome, etc.) is identified. It does not require being unexplained.
Yes, that makes lots of sense. You’re thinking of it from a developmental, neurology, and neuroscience perspective, and I’m thinking of genetics. Those are, of course, complimentary disciplines, and they’re all highly complex dynamic systems that have a great deal of adaptivity and plasticity. A variety of different disruptions may settle into the same stable states.
There were several behaviors of my infant who turned out to have autism that I believe were early signs. Self destructive stuff, like being too hungry and pushing away a bottle is the same as the older kid getting so disregulated when hungry that they can’t eat. The 7 month old that would crawl on top of the cat is the same as the 13 year old who will lie on top of the dog. The 1 month old that would spend more time focused on people moving in the room than on Mom or Dad’s face[1].
At 3–4 a nursery school teacher with an MA in special education pulled us aside and said our kid was different and needed an IEP, evaluation, and diagnosis. As parents with no experience with kids we just assumed that the trouble they had with transitions (for example) was the same as any toddler. Someone with experience was nope, neurodivergent.
“Babies that old can’t see that far,” I don’t know what to tell you, just watch the kid and you’ll see. ↩︎
I agree with you there. Giftedness is a whole other thing. My son is gifted in math and one of the major issues we had with the public school was that they just couldn’t challenge him effectively. My husband would send in math worksheets for him to do as a reward for good behavior, but no attempt was made on the part of the school to engage him on a deeper level. Of course he’s going to be distracted and doing other things if he’s not being challenged.
The private school he’s going to in the Fall is unique. All the staff are rigorously trained in managing kids with ADHD, autism and other learning differences. The director we spoke with described the school as “one giant IEP.” At his age, the teacher/student ratio is 1:5 (it eventually goes up to 1:10.) And they place kids in math and reading according to their ability, not their age. So there are a lot of gifted kids there as well as kids who are performing below their grade level, as well as kids who are exceeding some standards and below in others. The fact that we happen to live nearby this remarkable school is really quite lucky. We have a cousin who attended who loved it and who is now a decorated Marine.
I think it’s going to be really good for him.
He is getting there socially. My husband remarked that he’s really more of a Level 1.5 these days. He made a friend at Summer day camp, a kid who was a bit older than him who was really sweet. The kid made him a huge (Like ten feet long) lanyard in rainbow colors (the only acceptable order of colors.) Now when I drop him off I see him talking to other kids more. He’s different for sure, but some kids seem to like him. I think when he’s at this school around other kids like him, it’s going to make a big difference. Especially once he meets a fellow math nerd.
Finding their people seems to be the trick for kids like your son and my son much more than neurotypical kids. Once my son did that, the rest seemed to fall right into place. It also helps that kids these days are a lot nicer than they used to be. Not sure what caused that sea change, but they don’t seem to pick on kids that are different like they did in my era.
As an adult with relatively recent awareness and framing of my own ADHD and autism, this feels familiar. At least for me, lots of the ‘classical’ stuff was or is manageable enough to be invisible to others, or comes across as just quirky.
For me, gaining an understanding of ADHD and autism has really blown open my perspective on my own life- brick walls that I have been smashing into my whole life suddenly connect with each other and form recognizable patterns. Recognizing the patterns, I am for the first time able to identify what is hard about certain things for me and why, and then make constructive choices about what things to attempt, what to avoid, what skills to work on, and what choices I can make to support my own success.
I don’t know what to tell you, just watch the kid and you’ll see.