I'm interested - for reasons. Does anyone have a sense of what this study means in a practical or actionable sense?
In toto, the conclusion of the paper:
> Together, these findings define a dual-layered model of molecular convergence in ASD: convergence through shared interaction networks in the wild-type state and convergence through recurrent functional consequences of interaction rewiring in the mutant state. More broadly, this work establishes a scalable framework for systematic interrogation of the autism proteome, enables prioritization of druggable protein interfaces, and provides a rational foundation for precision therapeutic strategies aimed at restoring neurodevelopmental trajectories.
I have no grounding here. Does anyone want to have a go at teasing the meaning out?
Here’s how I’m thinking about it (still digging into the details): across genomics, it’s become clear few traits have clear traceability to a few loci in the genome.
Instead, evidence has been growing that epistasis, the nonlinear interaction between genes and other genomic regions, predominates in explanations of most phenotypes.
What this paper does is show where upstream of the genome various combinations of mutations can interact to cause damage during development, thus leading to the phenotype. Rather than correcting a particular mutation, or targeting drugs to their protein products, we may find downstream protein-protein interactions that are strong drivers of the phenotype, and hopefully find ways to prevent/reverse these effects.
I interpret it as they think they can find treatments that will course-correct the development of a child, but they're not saying anything about fixing something that's already broken.
I live with a child who spends entire days with videos on his tablet. We can't take him anywhere because if the trip differs from what we told him (trip duration or locations), we have to abort the trip to prevent a meltdown. His inflexibility means he can't hold a job or go to school or training. He can't do household chores without prompting and handholding. He will never live alone or have anything resembling a functional life. We have to make plans for how he will live after his mother and father die. We have to make space for his meltdowns that seem to come out of nowhere.
His mother nearly bankrupted herself paying for private school for kids on the spectrum. His parents sued the local school system because they didn't have any teachers who had any skill with autistic children. couldn't protect him from bullying and couldn't or wouldn't follow the IEP. (Note: this is one of those events that ruin retirement plans). The state claims to have resources for my partner and her child, but when they try to get help, the state says it didn't realize she would need that much help.
Then there is the never-ending struggle to get appropriate psychiatric and psychological help for him, and if you think it's hard to find a psychiatrist for ordinary mental illnesses, finding someone who knows how to deal with kids on the spectrum is almost impossible.
His disability has had a negative impact on my relationship with his mother. As she has to make room for her child's emotional outbursts, I make room for my partner's angst about having a child who will never function on his own. There is a big loss of day-to-day intimacy because you never know when you will have to put up an emotional barrier against his behavior.
My child is a level 1. It has cost me thousands and thousands of dollars to get her help because no one wants to give her resources because she's so high functioning. So high functioning! Yes my child who has random panic attacks and bolts in random directions. My kid who had a meltdown because I forgot to tell a friend that if she goes to one particular park, they have to get ice cream. My kid who is 7 and was suicidal from the social isolation that's starting up. And now that she's self-harming, now people want to give help! But not for the under lying issues. She's so high functioning (aka female and coping decently). She doesn't need pragmatic language help or social help or any of that stuff. Her spiraling is just purely chemical imbalance. Here's some pills.
My kid is truly high functioning. Only professionals tag her immediately. For everyone else it takes some long term intimate interaction to realize something is wrong. Any autistic adult who says this is great is coping. I have talked to too many high functioning autistic women and there only seem to be two camp: lots of mental health issues with possible commitments or intense treatment that their parents poured so much money into. And never of those is okay or what I'd wish on a kid. I didn't even know it was possible for a 7 year old to be suicidal without a major life event and apparently this is just a thing with some high functioning autistic kids. This is not okay.
I'm dx'd level 2. I was diagnosed until later. It's hard to be an autistic kid, full stop. Nothing but empathy for you and your daughter.
If it's any consolation, childhood years can be very tough around that age for autistic kids, but many of us find significant communities once we get online and around other autistic people our own age. Many of us go on to be very successful and happy adults once we find our niche.
He's never been classified that way as far as I know. I would say somewhere between level 1 and level 2. He writes very well. But speaking person to person, not so good. And as I described, there's significant rigidity in his behavior. For example, when he cooks, he can't generalize. Cooking is by time, not appearance, food has to come the same packaging etc.
Level 1 is minimal assistance needed. Simply "requires support". Might need headphones sometimes or additional space to process feelings. This can often be just some extra coaching or training.
Level 2 is "requires substantial support". This is where there are significant obvious impairments to daily life. You may not see emotional reciprocity, and peer relationships may be difficult. Sensory sensitivities may be more pronounced.
Level 3 is where people may be nonverbal or not always verbal. They may need significantly different communication systems like pictures. Aggressive outbursts, repetitive and narrow interests, self harm like head banging, shutdowns or meltdowns from moderate to mild stimulae are not uncommon. They will likely need supervision and may need support to consistently complete basic daily tasks like eating, toileting, etc.
I'm diagnosed level 2. What you are describing does not at all sound like level 1. Perhaps you've flipped the scale and meant somewhere between 2 and 3?
You're probably right. I may have flipped the scale. I see most of what you describe in level 2 combined with significant difficulty being flexible. At the same time, he writes very well expressing his emotions and insights. He can handle basic things like hygiene, laundry and food prep if it's pre-packaged but has a hard time with emptying the dishwasher. Frequently when he does things around the house, he is watching videos on his tablet in one hand and using the other hand for the task.
Yeah, it does suffer but we make a conscious effort to find the positive things in our relationship and life.
No, I do not have any children of my own. I am thankful for that because my ex-wife apparently was also autistic but not diagnosed until after divorce. On my maternal side of the family all of us kids inherited some form of severe depression through my brother was schizoaffective. I survived, found good treatment that left me feeling like myself with a clear mind. My brother on the other hand was tortured by his demons and ended up taking his life a couple of years ago.
Not having kids was a conscious decision because I didn't want to take a chance of spreading the family curse to the next generation
It's one of those choice not choices. I love my partner a lot. We bought a house together with a great yard with a significant fruit and veggie garden.
Separating would be significantly destructive / damaging on both a personal and financial levels.
That said, I entered this relationship without fully understanding the impact of an autistic child. I would not condemn anyone who refused to be in a relationship if the other person had an autistic child.
That's a good correction. Heck, leaving space for the child to grow up and have their mom when they need them and not helping if it is not asked for is difficult at times.
From my admittedly limited experience, the parent and child have relationship that will keep you on the outside even if the family has made a conscious choice to include you as a step parent. I have made a conscious choice to be okay with being on the outside.
My deepest relationship and commitment is with my partner. Everything else is secondary... except maybe watering the plants in the garden during a drought.
Stop making so many harmful assumptions about your partners child. Theirs a good chance he’s just weird and he’ll grow out of it, but you’re not exactly helping here.
Hell, to be honest I was weird as shit as a kid until my dad kicked me out and then I matured real quick.
If I had to guess my issue is that I’m essentially half asleep most of the time unless I have a Red Bull or 2.
Or you can always just leave.
Right now your post reads like ; “This annoying kid is messing up my relationship with his mom, I’m the victim here”
I’d venture to say all kids are annoying and if you can’t deal with that date someone without kids.
Autism is a disability. The function of the brain to normally process social cues is broken. In the same way someone who is blind has broken vision, someone in a wheelchair has broken legs, and someone with ADHD has broken executive function.
This isnt a moral judgement, theres nothing wrong with being disabled, but it remaims a disability that many people struggle due to.
The disability exists when compared to neurotypicals but does not necessarily exist when compared to other autists.
As a comparison, if you put a bonobo with chimps the bonobo will be severely disabled socially, but it won't be when compared to other bonobos.
The fact that autists can communicate with each other does not fit typical models of disability. A blind person should be blind to another blind person.
There is interesting evidence that autism-autism social interactions are fairly vibrant. Everything is a bit more complicated than simple answers, no matter which way you swing.
You've agreed with what I said. Nothing here is counter to or in opposition to my point.
The person has a disability. Part of the person may be broken, but the person isn't broken. I'm autistic. My sensory processing wiring is different and arguably broken. But I am not. I'm disabled. I can overcome the broken parts that result in my disability with support.
Some autistic people have to wear helmets and spend all day rocking back and forth eating anything they find in the carpet. The are unable to care for themselves and depend fully on others.
These people are not operating within the nominal range of human behavior that might be classified as "functional."
Only 20-30% of adult Autistics can even hold a job. Not a 'good' job, mind you, ANY job.
I kind of thought that the fact I provided a number at all implied that it referred to the diagnosed, but the point that we can't know what we don't know is fair.
Still, my point stands. Most people who have it badly enough to get diagnosed can't hold jobs. Autism isn't some quirky personality trait that makes you a special cool kid on Tik-tok. It's a government recognized disability.
I'm dx'd level 2 and have a job. I think your stats are out of date. Yes, unemployment is high in the autistic community. But it's not to the degree you suggest.
In my case I have uneven capabilities, but my worst functions are still average and my best are very high. It's far more common for the best capabilities to be average and the worst to be far below. It's like one of those character creation screens in a game where you get to distribute skill points and someone hit 'random'. I got lucky and there were plenty of points to distribute randomly. Most seem to have had fewer to start with.
> I think your stats are out of date.
I looked it up before I made that post yesterday. It's pretty current, unfortunately. There is a ton of variation regionally, and there are different definitions, etc... Like all statistics it's more complicated than the headline, but the TLDR is that globally the diagnosed adult population averages around that number and it's literally one of the worst forms of disability to have as far as employment goes.
I think it's less than this. Perhaps 25%-40%. But highly variable based on socioeconomic status.
But the parent post is also wrong. Statistics vary, but employment among autistic people is as high as 58% in the US (which shouldnt be surprising, given that many autistic folks have no diminishment of iq).
So, definitely huge unemployment rate, but not so dire are the gp suggests.
That study suggests that 65% of autistic individuals are undiagnosed. The 90% is only for middle-aged and older.
Skimming a couple (due to time constraints) of the sources mentioned in the study, one source [1] mention that "3 in 10 autistic people of working age are in employment", and the other [2] that "approximately 50% fail to achieve independence in their living status, employment, and close relationships"
It doesn't seem to support the claim that "90% of autistics are undiagnosed and work".
Autism is a spectrum. Neurodiversity within and outside of autism is both intrinsically valuable and extrinsically valuable to society. However, not all phenotypes of autism should be viewed as neurodiversity, but as harmful. There is only so much that society can do to make severe intellectual impairments less disabling without identifying a cure for the intellectual impairment. The debate between medical versus disability models, neurodiversity versus pathology, inevitably gets pushed by those that want to classify everything into clean essentialist boxes, but that, I do not believe, is a helpful way to view the world. Not every condition is a pathology, nor is every condition benign if only society would do more to make it less disabling.
I mean, it's classified as a disability for a good reason.
I would guess that even if this platform has more autistic people due to being tech focused, autistic tech nerds and programmers are on the extreme end of high-functioning. Many low-functioning autistic people will never be able to have a job or live by themselves.
This is the same issue as high-functioning ADHD'ers saying "ADHD is my superpower", meanwhile people with severe ADHD do significantly worse than the general population in basically any metric, up to having a lower life expectancy.
This isnt to say its morally bad, theres nothing wrong with being autistic or having ADHD, but it is a disability. Just like someone who's deaf can live a totally happy life but still be disabled because they are not able to hear, someone with autism is disabled because they are not able to process social cues at the same speed, even if they are a great person and have a good life.
"Have a disability" and "broken" are not synonyms.
There's no judgement or moralizing in having a disability. Autism and ADHD like you mentioned are disabilities.
But the people who have them are not broken. Having a disability means some part of your life is more difficult. But that's very very different from you as a person are broken.
For example, if you can fix the environment and the person can now function equally to someone without a disability, then maybe it's the environment that's broken. If you can fix the social expectation and suddenly the person can function equally, then maybe the society is broken. Even if you cannot accommodate the person's needs, insinuating they are broken is not a great framing -- it creates a sense of pity rather than constructively looking at means to support them.
That's just people though, if you walk around with a scar on your head you'll see lots of knee-jerk immediate reactions. Some people are able to mediate those initial reactions and be kind, others just go with it and treat people poorly. Yes - some people are a'holes, and treat those without legs poorly.
The same is true of basically anyone that doesn't fit into what you typically see - there's always some people that will treat them poorly. It's unfortunate, but was probably adaptive during our evolution, and something we just have to deal with today.
> If you see a person without legs, do you tell him he is a piece of shit because he can't run? So why harass autistic people?
If you have not yet realized it, here is a black pill for you: most people are deeply manipulative and bullying basically all the time. For example nearly all social rules that are commonly accepted in society are basically about which kinds of manipulations and bullying of other people are accepted by most people vs not.
With this in mind, the answer to your question
> So why harass autistic people?
is trivial: because it is currently socially mostly accepted.
> If you have not yet realized it, here is a black pill for you: most people are deeply manipulative and bullying basically all the time. For example nearly all social rules that are commonly accepted in society are basically about which kinds of manipulations and bullying of other people are accepted by most people vs not.
You went from "Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments" to "refuse to interact with autists".
> For example nearly all social rules that are commonly accepted in society are basically about which kinds of manipulations and bullying of other people are accepted by most people vs not.
> Have a disability" and "broken" are not synonyms
They really are. Like, you can alter the environment all you want but someone who needs glasses to see has broken eyes. Is it super common and do we have a cure? Yes and yes, but it's still, you know, not working. Disabled. Busted. Broken. Whichever word you pick isn't going to change the reality.
"That person is disabled" and "that person is broken" fundamentally are different. You are supposed to fix broken things. We don't fix disabilities. We can support them, treat them, assist them.
Yes, having a disability is hard. But the person is not broken.
In toto, the conclusion of the paper:
> Together, these findings define a dual-layered model of molecular convergence in ASD: convergence through shared interaction networks in the wild-type state and convergence through recurrent functional consequences of interaction rewiring in the mutant state. More broadly, this work establishes a scalable framework for systematic interrogation of the autism proteome, enables prioritization of druggable protein interfaces, and provides a rational foundation for precision therapeutic strategies aimed at restoring neurodevelopmental trajectories.
I have no grounding here. Does anyone want to have a go at teasing the meaning out?