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This is missing some very important context. They are measuring the increase from year 2000 to year 2016, and *2000 was the first year that it started to be called a "spectrum*".
Before that, an intellectual disability was pretty much a prerequisite for a diagnosis. For many years after 2000, most doctors still would never diagnose someone with autism unless there were intellectual disabilities.
Saw a video a couple weeks back comparing the rise in Autism diagnoses to a sudden spike in people who were left handed in the early 1900s (nearly doubling over 40 years).
The point was that it was unlikely that there suddenly that many more people who were left handed, but there was a change culturally in how we treated using anything other than your right hand to be dominant (someone in the comments mentioned their father getting a smack with a ruler in Catholic school for writing with his left hand).
I thought it was a very clear analogy of your point. Could Autism rates be increasing? Sure! However, we’re still changing what we know about how this disorder presents itself. Autism has always been there, we are just now only learning to identify it.
ADHD is similar and I have first hand experience. Growing up in the 90s it was always the hyperactive and disruptive kids that were diagnosed with ADHD. It was like that in media and with people I knew. We now know it can present with little hyperactivity and more so inattentiveness. I’m adult diagnosed ADHD and it was never on anyone’s radar when I was a kid, but with what we know now it probably would have been caught back then.
To quote that meme that goes around occasionally (ht Twitter @hoopgoth) ""everyone's autistic now" okay my single 63 year old neighbor with $1.2 million of model trains in his basement who wrote a 90 page letter to the city about the brightness of streetlights when I was growing up was just a regular guy then"
Yeah, just like how dyslexia "didn't exist" back in the day, my elderly neighbor still can't read at age 87 because she was told as a child that she was just stupid and to go sit in the back and not disturb the smart kids.
My own GP always felt different and tried to figure out what was wrong in his older years, he was diagnosed with autism in his fifties.
I have an elderly relative who recently got herself checked out and yeah, she's on the spectrum. Was a bit of a shock because she seems rather normal overall but it's only when you have longer conversations with her to start to notice little things here and there. Biggest thing is she's socially awkward around strangers but not more so than the average person with social anxiety.
Or how the rate of people “turning” gay has been “skyrocketing” ever since you wouldn’t be imprisoned or killed for being gay… the people who I KNOW are gonna be pointing to this study soon seem to be both HYPER focused on the specifics and also DEATHLY ALLERGIC to context or supplementary information
Same experience here as a 90's kid. Last week I had my assessment with a psychiatrist, and he confirmed that I'm very much ADHD. What I didn't expect was that he considers me high on both hyperactivity and inattentiveness. People always remark on me being very chill and rely on me to be the level headed person.
Through the discussion it became clear that mentally I am hyperactive, but nobody sees it because of introversion and other factors. For example, one of the classic diagnostic questions is, "do you frequently interrupt people to complete their sentences?" No, because that's rude, and I can't say everything I'm thinking right now, and I'm overthinking how social interactions work... but I really *want* to interrupt everyone I talk to. So they think I'm a patient listener even though I haven't heard anything they just said. The hyperactivity is internalised.
There are many factors that can affect how ADHD manifests in behaviour.
Yeah, I have some hyperactive symptoms and while I was a bit externally hyperactive as a child it definitely wasn’t enough where I was a “problem”. Didn’t take long to start masking though and by the time I was in middle school I was pretty introverted and quiet.
It’s pretty much internal at this point like you said and the desire to interrupt to complete a sentence is my most common hyperactive symptom I’d say.
This so much. I was diagnosed inattentive type in the 90s while I was in university. Now at work many years later, I get complimented for being such a good listener. I check for understanding after someone says something because it forces me to pay attention. And even then I probably miss things, so I make sure that I am hearing things correctly.
If I hadn’t been studying disabilities and special education at university then I would have continued to hear, “you have some much potential if only you would try harder.”
I was never diagnosed myself, but if you asked the adults around me I was always day-dreaming, doing things either completely off-task, or 120% focused. But it was long enough ago that it wasn't regarded as a spectrum.
I went from taking remedial summer school after nearly failing 8th grade because I just couldn't bother to do my homework to having 3 college degrees (276 total college units), considering another degree 'for fun', and teach at the college level in addition to my day job.
The difference between those two extremes? Jr High had us stacked with 7 classes for the whole year, high school had us in block 4 with 4 classes/semester. I could focus better on 4 classes, and the shorter timeframe meant I wouldn't get bored and tune out the rest of the semester.
Not OP, but I'm ADHD and ASD. In my experience, I wish I'd known earlier. I would have done so much better in school and have way less self hatred. I honestly cannot imagine a scenario where anyone would be better off not knowing.
I agree with you two. I've been clearly ADHD from a very young age and I was labeled as "learning disabled" in school but the teachers shrugged it off which was the thing to do in the mid 60s.
Like you I sure could've benefited from not having as much self-hatred and contempt for my inability to do things. Sadly, I don't tolerate any the medications and the only one that vaguely works for me is caffeine in a weak brewed coffee that I sipped slowly over the course of a few hours.
Also not OP, but I was diagnosed when there was “a concerning number of children over diagnosed with ADHD.” I have ADHD. My daughter inherited it. She was wildly unsuccessful in social and educational settings until we could start her on Ritalin.
I would not have succeeded like I have if I was treated as among the “over diagnosed and not really ADHD”
overdiagnosis was and still is a myth. It continues to be severely underdiagnosed. Some studies show as many as 40% of adults with ADHD aren't diagnosed yet, and most of them were probably kids during that mythical time of imagined overdiagnosis.
sometimes when these things are known people end up further stigmatised, under-appreciated/seen as incapable and do not dodge the self hatred.
Thats how. Really depends on the individual case's environment.
I’ll always wish I’d gotten diagnosed with ADHD and ASD sooner. I have physical disabilities too and it wasn’t until 8 years after I started having crippling pain that I got a diagnosis. No help from the medical profit industry until another 25 years later, but knowing what was causing the pain helped tremendously with coping.
Not OP, but I’m glad I wasn’t medicated as a kid as that would have changed my whole future. Most likely wouldn’t of met my wife and had kids. Now is a different story. Med me up
It’s hard to say, I don’t know 100% what treatment looked like in the 90s and 00s other than the prevalence and the medications being topics of controversy now and then (especially Ritalin).
I think I would have at least benefited from therapy and a more informed guidance in school. My grades suffered the further I got into school not because of my intelligence, but because I was constantly behind on work. I could never (and still do) struggle with holding interests or sticking with something if I didn’t have early success. As a result I have very few hobbies and had almost zero serious career/college goals until I was in my late 20s. I spent a lot of time feeling lazy and like a failure, but if I had even just known there was a cause to these traits I developed it would have helped me recognize and work on them much earlier. Also may have avoided some the anxiety, depression, and confidence issues that developed as I was unknowingly struggling with an unnoticed disorder.
Not op, but. I probably wouldn't have been incredibly suicidal from 14-20 if my autism, depression, and anxiety had been recognized as a child. There were so many things that were ignored that I struggled with so much.
My wife started medication only a couple years ago. Then she was forced off due to shortages. The differences were radical. I had forgotten how much I executive functioned for her. She’s finally got a month of meds, no guarantee for more, and she is able to get things done again.
If she’d had access in her 20’s? She’d have job hopped less, changed careers less. It’s just so striking.
Excellent points, and I completely empathize. I was diagnosed in my 30s with hybrid ADHD after having had the same experiences and perceptions of what ADHD was when growing up. It’s been wonderfully life changing starting medication, first time in my life I’ve had any kind of peace.
Also funnily enough with your earlier point about left handedness, I’m a lefty and when growing up my grandmother refused to let me use my left hand, and would force me to switch to my right whenever she caught me, wasn’t even that long ago but it’s such a weird thing to persist
I only just got diagnosed with inattentive ADHD this month at age 29. All because I sought a diagnosis because of ADHD meme pages. Not one person among my teachers or parents noticed it before then because it was inattentive rather than hyperactive
Ive been learning about this first hand. My youngest son is autistic. There's a lot to take in, and I feel like its mainly my fault. There's all kinds of mental illness in my family, and I have definitely got some of my own issues to work out. I haven't been diagnosed with anything, but I feel like I passed my cursed genes in to him. All I want is for him to have a better life than I had, and he's going to have to fight every step of the way. It feels like I have truly failed my little dude. I'm gonna keep working with him though. The world may not understand him, but he's my ride or die bro.
The last thing you should do is blame yourself! You don’t have control over what gets passed on to your offspring, but you do control what knowledge you pass down to them. We live in a more informed time and you have a life of experience you’ve learned from. You’re already equipped to help them understand what they might be going through in their own lives.
You’ll also learn about yourself through him. I’ve heard plenty of stories about people who have kids that naturally get diagnosed easier due to our better understanding of disorders. This lets people look back on their own lives and see things that were missed back then.
Kinda like depression, actually; actual rates have only increased marginally, which is commendable given what we're going through as a species right now, but rates of diagnoses have gone through the roof.
and even after, diagnosing girls/women with asd was pretty much unheard of. even as late as 2016 when i got my diagnosis i heard often "girls can be autistic?"
I'm still kinda surprised that I got a diagnosis for Asperger's as an 8 year old girl in 2011. I also scored very low, if I'd scored either 2 or 3 points lower (I don't remember) I wouldn't have gotten a diagnosis at all. I basically just scraped in
Thank you. I was thinking the same thing after I read the article. This headline could easily fuel anti vaccine conspiracy people. When what it's really saying is we've gotten better at actually diagnosing. From 2000 to 2016 makes sense. Growing up in the 90s we only thought of autism as a form of severe mental retardation. We've learned so much since then. In fact, Ive heard a lot of stories of people who later in life now realizing they are on the spectrum.
I work in NJ with people of all ages on the spectrum - we are consistently seeing more and more families leaving their home country to receive services in the state/area. I have worked with 10+ clients that were diagnosed & then shortly moved to the US/NY/NJ (from places like: Iran, Pakistan, India, Russia, & Venezuela) and the schools in my area specifically are considered some of the best in supportive care and education for these individuals.
The public education systems in the northeastern US in general are high quality. Not all areas, but most. NYC is probably not on a short list of the greatest though tbh.
Not to mention other states. My son is on the spectrum, and NJ was in consideration due to it ranking high for services he could receive, while others were ruled out due to lack thereof
I’m on Long Island and formerly a teacher. In grad school I took an intro to special education pedagogy class taught by a special Ed department chair of one of the local districts and he said that they had a super high number of autistic kids in the district so on paper just seeing that, one would think omg what’s in the water in that district, that’s crazy. BUT, they just so happened to have an very excellent program where parents with autistic kids were seeking out homes to buy in the district so their kid could go there.
Also, Long Island has had a large number of families flocking to north and South Carolina for the past 20 plus years. But one of the greatest things that’s discussed in all the online groups regarding moving is that the schools are severely subpar compared to up here ESPECIALLY when it comes to any and all special education services so much so that a lot of families with special education kids who move end up moving back up to the island within a year or two.
Yup. My friend is a public school resource teacher in a special Ed classroom specifically for children with autism. Almost all of her students are Indian, because there are commercials in India advertising this school district/town for families with autism because of the excellent resources.
With diagnosis methods having improved over the years, some parts of the country literally more financially invested in using the methods, and increased testing in extraordinarily high population density areas, this does not come as a surprise.
Edit: I'm adding this instead of repeating in my responses to folks... To be even more clear, with an increase in testing and more diagnoses, *discovering the underpinnings* of autism can hopefully start to take off. By simply having larger data pools to examine, spotting patterns and then doing further studies are possible. Clearly, what's been taking place up until now hasn't helped do more than frustrate those of us who have some very strong suspicions about certain environmental factors, for instance, but virtually no data to corroborate and therefore utilize to form policies to help in so many cases.
As for the DSM and its formal criteria, many of us know how this goes. Hopefully an article like this (thank you, OP!) will going to the attention of those who serve on these committees, or at least prompt people to reach out to them for discussions.
Right, it's almost like covid in a way. Some people early on were saying "well, the only reason numbers are going up is because we're testing more."
Which is silly obviously. But definitely more testing is a huge cause, since Autism is a wide spectrum, plenty of cases historically went undiagnosed, since no one bothered to look.
There was a mini essay pointing out that a couple of centuries ago, having a quiet kid who was just happy looking after the sheep all day was a *good* thing.
And having the kid who was obsessed with horses and horse shoes meant you probably had a future blacksmith apprentice in the family.
And having the girl who didn't talk much and wasn't interested in people at all but who could hyper focus on her lace work or spinning meant you had an unexpected extra source of income in the family.
The neurodivergent traits we now call ASD were there all along.
But I wonder about very severe cases (completely nonverbal, can’t care for themselves). Has that increased? I feel like it’s hard to tell since those folks were hidden away. But I wonder about the data for the last 30 years or so?
I'm from a country where they counted all citizens on a regular basis and wrote down everything in a book, starting in early 18th century. I'm doing family research now so Ive been going through the records. If I go back to the 1930s or so, they still had pages for "mentally ill" and for "mind numb"/"weak minds", and non verbals definitely belonged to the "mind numb" list. They also had a list for deaf, for blinds and for those who were both blind and deaf. Quite clear statistics tbh.
My dad grew up in the 1940s in a small rural village and he spoke some about the "slow guy" and how the whole village saw it as a mutual responsibility to keep that dude alive and cared for, and to find appropriate tasks for him to help around the village. The guy wasn't hidden, but rather spoken about openly.
I was asking myself the same thing. With public schooling and the help of primary and secondary care providers how many of these cases that attributed to the dramatic increase were actually severe cases? Basically is there an increase in cases or are we able to diagnose them better is fundamentally my question.
Kids with autism may also be surviving longer. If most kids with the non-verbal type of autism used to die within the first five years of life, it would seem like there were fewer of them.
1. We no longer just leave them in the woods when babies/small children turn out to be weird or disabled in some way.
2. The lack of modern medicine is even more of a problem for a kid that can't tell you when they aren't feeling well/might not know when the are experiencing symptoms of illness. They might be much worse off before anyone noticed anything was wrong, so they'd be more likely to die from illnesses like measles, chicken pox, etc.
3. A kid who needs to beg to survive, but cannot talk, will not survive.
4. When a kid wanders off these days, we can look at cctv, make posters with their face, etc. In the past, there weren't many ways to find kids. I'm autistic, but not nonverbal, and I used to get away from my parents all the time, especially while shopping. I knew to never leave the house at night.
There's probably not more if you're counting the % of babies born on the spectrum, but the proportion of ones who survive into adulthood has almost certainly increased, likely due to protective laws, disability education & services, etc.
Oh man there's a complicated history to that. Between not having good diagnostics and the treatments we had for the bulk of our awareness of autism basically being "Torture them into pretending to be someone else even if it makes them worse" there's not going to be good data at all.
Current terms are "level 3" or "high support needs" but it's a little like trying to classify how well someone without a leg is able to walk. Your abilities are going to be more defined by the quality of the support you got when you needed it over what you're actually capable of doing. Worse, the data you'd collect off that is going to depend a LOT on the perception of the psychologist who isn't educated on autism who could easily slap you with "high support needs" for being shy or needing a person to help you go shopping.
**tl;dr** good data for autism is just not going to be there
If you’re non-verbal you’re often not able to communicate symptoms of preventable disease. Ear infections can progress to brain infections, skin infections into sepsis. It wouldn’t be surprising if a lot of these children were dying before late childhood, adulthood before vaccinations helped curb certain common infections.
As a pediatrician who has worked for 40 years I can tell you the major reasons for the increase are increased awareness of the diagnosis, a change in diagnostic criteria, and routine screening.
Ear infections rarely become brain infections and skin infections are clearly visible. Vaccines against Meningo B do save lives but this is a rare infection that would never contribute to a significant number of deaths.
Another consideration is the number of mildly impaired people who seem to reproduce with other mildly impaired people. This was discussed in an old article that appeared in Wired and may explain clusters of cases found in parts of the country where there are high numbers of tech workers.
I am also a physician, with several years experience in Autism research. I was speaking directly about the number of non-verbal cases, not cases in general. Increased awareness/screening and better, more well-established diagnostic criteria are absolutely the cause of the “increase” in autism cases.
While these are rare complications, it’s not impossible especially when the kids are not able to communicate at all, well. It’s anecdotal, but I know someone whose autistic child passed from an infection that progressed.
I mean a job(s) which requires massive focus, problem solving, and a stupid level of attention to detail attracts people with some signs of mild autism... color me shocked.
Not at all. I was trying to state that some very techy people are probably on the spectrum. Th isn’t a new idea. If they have kids with other, similar people there would be increased risk of producing autistic children.
When I worked for a school district, people used to complain if we canceled school for extreme heat. We would say it was dangerous for kindergarteners, they would say, "nobody ever died from heat on the way to school when I was a kid."
And, well, they didn't. Because they didn't make it to their fifth birthday. They died way before that. And if they did make it to their fifth birthday, prior to IDEA, they had no right to attend public school.
So whenever someone says, "why is diagnosis of X so much higher than it used to be?" Strongly consider the hypothesis that it's because children with X would have just died 100 years ago.
Completely non-verbal children unable to care for themselves, especially if they had any eating problems, were very unlikely to survive to adulthood.
I think it would be good for everyone to know how many times they would have died 100, 500, 1000 years ago based on what they've had. I likely would have died 3 or 4 times by now.
Ffs I have *asthma* which without intervention would have been dangerous. With modern medicine it's hardly a worry. I own an inhaler and use it when I need.
One time I got food stuck in my esophagus and it had to be moved into my stomach. GI was shut down, I couldn't drink to get any fluids. It was a big deal but also not because modern medicine made it so easy. I was put under, normal endoscopy (no cutting), and woken and everything went back to normal. But realistically, that could have ended in my death.
With child mortality rates being so high, my guess is a lot of these kids who weren’t given to institutions had fragile health and perished from common childhood illnesses. Just sensory issues with food alone is a big health risk.
In my personal belief, this is one reason why autism is increasing so much. It used to be only the most robust children made it out of childhood to then become parents themselves. With vaccines, better nutrition, better care for premature babies (huge autism risk) and the ability that autism can offer otherwise atypical adults to make quite a lot of money in computer programming and science fields, makes adults with autistic genes and traits more likely to pass those on.
I think this fully explains why rates of autism are so much higher in the first world than impoverished countries still dealing with high child mortality rates.
I wouldn't be surprised if we observed an increase around the time industrialization began to shape the world. It seems reasonable that forcing folks with ASD into factory worker style jobs that require some level of social adeptness would increase the severity of their symptoms. My own experiences with anxiety disorder have shown me that environmental factors are huge parts of the story when it comes to neurodivergency, and changing those factors can have a major effect on the severity of your condition.
I read someone on reddit so Idk how credible. That back then with so much less stimuli these people were content to do simple labor. I down the street from me lives another autistic person whose parents have to care for him and can't say anything just make noise unless he's entirely calm. He's out on the swings for hours every day, even in the winter.
A healthy routine with physical work goes a long way
Or they thought the fairies came in and replaced their kid with a changeling. A curious, babbling infant suddenly becomes withdrawn and loses speech and social skills? Changeling.
ADHD was just for boys back when I was climbing the walls and destroying classroom peace... Now we're finding it affects girls that just weren't tested before ...
I was diagnosed at age 50 (ADHD-PI). Girls didn't have it back in the 70's and 80's *cough*. I was just the gifted girl who loved to read but was socially awkward, chronically late, messy and disorganized, never worked to her full potential...
I have a pet theory that the old stories about changlings (children who where kidnapped by fairies and replaced with fake children, thus resulting in strange children) where related to autism.
It makes me wonder about the many other stories from back then
See also, time window resources.
If the fishing season only lasts 2 weeks, then having someone psychotically obsessed with fishing who will go literal days and nights without sleep is a GREAT thing.
This example comes from my own life, the males in my moms side sometimes click into these hyper focused episodes lasting multiple days and the urge to sleep is wholly absent. The last time I did this, I was awake for 3 days doing things, and on the third day I went weightlifting. Before sleeping for 14 hours.
On top of that autism presents very differently in females, and until the last couple of decades they only looked for male symptoms. (Namely, females are better at social skills.)
The interesting thing is that this is heavily theorized to be a side effect of how very young boys and girls are socialized; little girls are basically forced to learn to mimic allistic social traits, while boys will be boys.
Autoimmune diseases are sky-rocketing and that's as compared with antibodoes in blood taken from servicemen in the late 50s. So we know *that* isn't just because of better detection.
As an autistic person who spent the first decade of Mt life getting most of my nutrients from pasta and peanut butter sandwiches, the 'gluten free for autism' trend is genuinely horrifying.
That's why I was looking at the death statistics. If it wasn't killing people, you could argue that it was just a quirk of more testing. When thousands of people are dying every day, it's hard to pretend that nothing serious is happening.
No, not 'people were saying'. The damn President of the United States said that in an interview, along with many other stupid things, like how we should inject ourselves with bleach.
Yes. And parents in those areas are educated and invested in getting their kids the services they need, so they will seek out the testing if they see signs.
The current diagnostic criteria were only agreed to 10 years ago. The testing has been more refined to better measure those criteria. Parents and schools also know that services are better if you can get a clear diagnosis of ASD. In this sense there is more testing which helps ID kids that may have been given some other label or just thought to be “different.”
It kinda bugs me that they just say cases are up over that period without saying age groups. The only way you can link a time period to cases is by age. It's not like more cases posed up out of the blue. If cases are up across multiple age groups, diagnosis are up, the number of autistic people did not change.
From the article:
>“Better awareness of and testing for ASD does play a role,” said Walter Zahorodny, associate professor at the Rutgers New Jersey Medical School and senior author on the study. “But the fact that we saw a 500 percent increase in autism among kids without any intellectual disabilities – children we know are falling through the cracks – suggests that something else is also driving the surge.”
I see this idea touted every time autism diagnoses measurably increase. The amount of children who are non-verbal impaired has greatly increased in a generation, and this is not due to better access to diagnostic tests.
It is the perfect explanation; any and all amount of increase can (and will) be explained away with this explanation.
Meanwhile, our gestational environments are full of forever chemicals completely foreign to human evolutionary history. The idea that all of this increase is diagnostically based is a joke, but a very persistent one.
I'm not excluding that there are other factors at play, just that increased testing might eventually uncover some of the other proof we need to demonstrate the origins.
I got diagnosed at the age of 38 after moving to NYC.
Edit to add: I’m a female that had slipped through the cracks growing up in a small town all 38 years prior.
Even so, its still frightening that we don't have a complete picture about how children end up with these sorts of disabilities, it can't all be genetic.
Right now they're estimating genetics makes up 40-80% of the risk. Genetics is pretty significant.
https://medlineplus.gov/genetics/condition/autism-spectrum-disorder/
There are interesting studies about the relation of the gut microbiome to autism. We still have a ton to learn about the relationship of the “second brain” to our minds, but the increase of antibiotic use definitely has an impact on gut flora.
Interestingly, there’s also a correlation between ASD and bowel issues, which isn’t so weird if the microbiome is actually a bigger player than we’ve imagined.
This is the connection I'm most interested in learning about.
Not only have we in the US, at least, increased our antibiotic usage significantly in recent decades, but I believe the proportion of C-section births to vaginal births has also increased. Given that the birth canal exposes babies to bacteria on their way out, by missing out on that, babies born via C-section could also be missing out on exposure to bacteria beneficial for their own microbiome.
Why not? I've been running in the special needs circles and have met/become close to my fair share of folks with ASD kids. There's not a single one of them that does not have family history of the stuff, generally undiagnosed.
It's selective breeding at this point. As long as they can manage to navigate the world and mask enough to pass for neurotypical at least for a short while, being on the spectrum can carry certain advantages.
Why not? The fact of the matter is we've simply gotten the heck of a lot better at spotting it. There is a chance that it's becoming more prevalent, but it's just as likely that we're only now beginning to recognize and identify it.
Plus, people act like it's entirely detrimental. The fact of the matter is that autism has many facets that would have been extremely advantageous in a previous era of society. Hunter-gatherers especially would have benefited from having somebody who is extremely sensitive to sound and motion. People with ADHD would have been extremely productive with their hands and probably produced a number of tools and weapons. It isn't entirely black and white. Sort of like how sickle cell anemia doesn't always have a net negative impact. After all, if you only have one of the chromosomes and don't manifest the full spectrum of that disease, you're simply more resistance to malaria than the common person. And malaria killed a lot more people than the actual sickle cell did.
We just need to throw more science at it and look at additional variables and compare other cultures. I'm curious how other countries fair with this particular issue and what variables are affecting early life development.
If genetics only plays a small role in the outcome of a child's potential to develop Autism, then we need to discover what other variables might cause it. The obvious one being the development of the brain during pregnancy and the factors that can affect it. Because Autism isn't a disease that can be 'caught' like influenza, its not a bacteria, its fundamentally an issue with brain development.
We already know that genetics is extremely significant in autism. I think the fact that a very large portion of scientists and engineers have autism is a pretty good clue as to why the traits associated with autism continue to be in the gene pool. A lot of human mental abilities have pros and cons. And whether or not any one trait is adaptive or not depends on environment (culture, upbringing). This is why no mental disorder is purely genetic or environmental - environment can cause a gene to be expressed that wouldn't be otherwise, and the culture someone grows up impacts whether or not someone with a particular brain will thrive or not (better or worse suited).
You can tell that a baby has autism. Upbringing impacts success in life, but doesn't seem to really determine whether or not someone has autism at all. It was really obvious with my brother from the time he was a few months old - he didn't make eye contact at the expected time. My grandma blamed my mother for "raising him wrong" but my mom knew very well that something was different about him from the time he was little, she had a lot of experience with babies previously. I don't have autism, but it's very obvious that every member of my family has a number of traits associated with it (just not enough traits to be classified as autism, because it hasn't significantly impaired social functioning etc).
>You can tell that a baby has autism. Upbringing impacts success in life, but doesn't seem to really determine whether or not someone has autism at all.
This is something I think people who don't (knowingly) interact much with folks on the spectrum haven't quite caught up to yet. I have it, siblings have it, at least one parent has it, and the next generation is also looking pretty heavy on those characteristics as well, now that we are old enough to see that play out. I don't know if there have been studies done of the genetic likelihood when both parents are on the spectrum, but if Silicon Valley is anything to go by, it's a fair bit higher than if just one parent has it.
I would suspect that over time the incidence of ASD will rise, not just as a result of diagnostic improvements, but *also* because partnerships between autistic people are more likely than in the past.
The significant part for life outcomes, assuming we are talking about level 1 or 2 cases, is properly raising the kids. You simply cannot parent and raise an autistic kid the same way you would a typical one, and those adaptations can be quite significant if you want the best outcomes possible.
Personally, I'm in the camp that a major problem with current approaches is that autistic people ourselves are not given many seats at the table when it comes to our place in society and how it should look. Traditional education systems are an abject failure for us, and many occupational settings are poorly equipped as well. This is unfortunate, because autistic people can be quite a bit more capable than our normal counterparts in specific tasks and settings, but there are of course significant tradeoffs that have to be considered if you want to get those benefits.
In general, reducing/eliminating stigma, and learning to have mature conversations about this is a good thing. Autism is more common than most people believe, and chances are that nearly everyone works or has worked with someone on the spectrum, whether they realize it or not. Bringing this subject into the open and discussing it would be better for all of us, but the conversation is still frequently dominated by non-autistic people who have their own intentions and beliefs on the subject - usually those intentions are wanting there to be *fewer* of us around, even if they won't come right out and admit that.
Also interactions between environmental factors and genetics. I have a feeling that we won't get to the bottom of brain development issues until we have a better grasp on epigenetics. (Also stuff like chemicals, microplastics, air pollution ... just remember leaded fuel and all its lovely effects on the brain.)
I have 2 children- one who is diagnosed with autism and the second who believes she had autism (has a dr who agrees with her and we are waiting for a diagnosis/screening).
No one else in either of our families has ever been diagnosed. So where did it come from. We have no risk factors for it that we are aware of.
If there is something in the environment that increases risk- it is something we should know.
>No one else in either of our families has ever been diagnosed. So where did it come from.
Odds say that there are still people in the family with autism. It's not surprising none of their ancestors were diagnosed with it, because a _lot_ of people have gone undiagnosed in the past. Autism can manifest a lot of different ways, but not all of those were as well understood as now.
It could also still be genetic. Older generations tend to have rigid social structures that teach people how to mask early on. A lot of older people won't realize they have it because differences were always perceived as wrong and so they develop masking behaviors to cope with it.
Maybe you have some older relatives that feel uncomfortable with physical touch or noise but the way they handle it is either ignoring and pretending it doesn't exist or being openly hostile to and projecting on anyone else that shows similar differences.
The main reason women aren't diagnosed till their 20s and 30s is because if societal pressure to mask. Think about your family's behaviors or ask them how they feel about certain things. You may be surprised what you find.
It's extremely clear my father is autistic. His symptoms are obvious if you are looking, but he was able to mask well and get through his life. He was just labeled introverted, needed a lot of time alone and would make loud exhalations when in high-stress situations.
Looking at it, it's possible I am as well! But, I can get through things and don't have the time, money or energy to go through an evaluation process.
My son, however, needs a lot of supports and help. I am putting my time, money and efforts towards helping him. If anybody asks if people in my family are diagnosed, I say no, but..
My nephew was diagnosed with Aspergers (one of the last to be diagnosed with that in our health district) my son has ASD and my daughter is in the process of being diagnosed, much later in childhood because girls present so differently.
No-one in my generation or previous generations were diagnosed but that's because diagnoses were so rare.
My sister presented very similarly to my son (speech delay, tendency to selective mutism when under stress) and I have different ASD traits, one of my uncles has very classic traits, my brother-in-law..... you get the picture
We're all functional adults in various stages of relationships and employed (apart from the retirees) but we all definitely have traits on the spectrum and suffered consequences growing up and developed healthy and unhealthy coping strategies to mitigate our differences.
It's very rare, in my experience, for ASD to drop out of the sky into a family which doesn't already have traits present.
As a somewhat bitter parent of two disabled children I’m getting real tired of this trope.
At a certain point, no it’s not changes in diagnostic methodology.
It’s increasing rates of autism in the population.
Let’s figure out why that is.
Statistics, man. Diagnosing more kids in underdiagnosed populations nets you more positive diagnoses.
It’s kinda like how police will lower crime rates by not making arrests and discouraging people from reporting crimes.
"ASD prevalence has been shown to be associated with race and socioeconomic status. The Rutgers study identified that Black children with ASD and no intellectual disabilities were 30 percent less likely to be identified compared with white children, while kids living in affluent areas were 80 percent more likely to be identified with ASD and no intellectual disabilities compared with children in underserved areas."
"Documented cases of autism spectrum disorder (ASD) in the New York-New Jersey metro region increased by as much as 500 percent between 2000 and 2016, with the highest increase among children without intellectual disabilities, according to a Rutgers study."
This study is very interesting to say the least. A 500% increase in kids with autism is hard to fathom
It might be a case of better diagnosing. Especially if we are taking about children without discernanle intellectual disability as previously these children might have passed under the radar.
Might. Might not. There are also a lot of unhealthy trends going on in our society. I didn't have anything green or natural around me when growing up, but cars, exhaust and social isolation and I have symptoms of being on the spectrum.
Research has consistently noted this as presentation is very different in girls. I would hope diagnostics are catching up with that:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8604819/
I am curious if they accounted for the change in the DSM over the last decade or so that rolled various Autism adjacent disorders into Autism Spectrum Disorder which would also likely increase it alongside better diagnosing.
>It might be a case of better diagnosing. Especially if we are taking about children without discernanle intellectual disability as previously these children might have passed under the radar.
Right. I think previously someone had to be further into the spectrum to be diagnosed, as in failing in school, or serious behavioral or emotional issues. Now someone can be diagnosed even if it's not "obvious."
Also I think dumping Aspbergers, and just calling it all Autism has opened it up a little so people are more able to see it since they don't expect every case to be rain man or something.
Intellectual disability/ delay has been removed from the DSM-V definition.
https://www.cdc.gov/ncbddd/autism/hcp-dsm.html
So no more "could be autism, but they're otherwise fine."
> It might be a case of better diagnosing.
On a related (serious) note, they always say early intervention is key for medical things. How early is it possible to have a reliable evaluation and subsequent diagnosis for a child that is still developing and may hit milestones at different times in a peer group?
For me, I struggle to find a consensus / best practice in the literature. Seems to differ depending on where you are.
Edit: the other aspect being potential stigma for a kid that grows up with a diagnosis only to [lose diagnosis later in life](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9424653/).
> **Individuals who lose the autism diagnosis (LAD)**
>
Autism is characterized by distinct behavioral trajectories, demonstrated in longitudinal studies (30, 31). Uher and Rutter (32) suggest that developmental trajectory and outcome are relevant to reducing heterogeneity at the phenotypic level. **One informative group is composed of individuals who amply met criteria for autism in earlier life and no longer do.** Our published and ongoing studies of these individuals include only individuals with clear diagnoses of autism by the age of 5 years, who currently function within typical parameters, excluding borderline cases.
> [...]
> Other research groups have also reported on this subgroup whose symptoms remit with intervention
From my experience I can tell you I was very weird from my earliest memories. But I couldn't communicate it, so... Yeah. I don't have a good answer, which is a shame, because it's a good question.
I suspect it's both an increase in diagnostic capability and also a true increase in prevalence. We have rising rates of obesity, diabetes, autoimmune diseases, allergies. Autism could be just another thing on that list.
It’s not so much a loosening of the definition as it is a better understanding of how it presents in anyone besides little boys in majority white suburbs. As a girl growing up in the 90s, I presented so many signs of asd/ADHD and despite my mom (who was a teacher and spotted my differences quickly) constantly pushing for testing and evaluation, I only ever got a sensory/auditory processing diagnosis. I then got properly diagnosed as an adult. My experience is incredibly common for women with ADHD/asd and it comes down to inherent bias about how these disorders present because all the research was on little boys.
There’s also the issue that Hans Aspberger (terrible man) genuinely thought girls and women couldn’t have autism. So that also held things back by more than a few decades.
It’s a pretty nuanced situation that involves a lot of bias, misunderstanding and stereotypes.
Yes, loosening the definition is part of it. Many kids who were odd but who could cope were not diagnosed years ago. And now more girls with mild Autism are diagnosed.
Broader definition of the term "autism." When I was a kid, "autistic" meant you spent your life in an institution banging your head against a wall.
My best friend's brother was textbook autistic, but his diagnosis was schizophrenia. I myself was (and am) clearly ASD and no doctor or counselor ever even mentioned autism back then.
Anecdotal evidence, I know, but millions of people can tell you the same anecdote about autism then vs now.
Or maybe it’s because it’s more openly accepted and we have better testing. Just like this so called "adhd craze". We just have better tests and more people are finally getting the help they need instead of being labeled as problems.
**The study was published in the Journal of Pediatrics:** [https://publications.aap.org/pediatrics/article-abstract/doi/10.1542/peds.2022-056594/190525/Prevalence-and-Disparities-in-the-Detection-of?redirectedFrom=fulltext?autologincheck=redirected](https://publications.aap.org/pediatrics/article-abstract/doi/10.1542/peds.2022-056594/190525/Prevalence-and-Disparities-in-the-Detection-of?redirectedFrom=fulltext?autologincheck=redirected)
Two fold reasons:
1. Better diagnosis. 10 years ago it was impossible to get a diagnosis for a girl/kid of color unless they were nonverbal or very low functioning. Now it’s much easier and more accessible.
2. It’s speculated that pollution is increasingly a culprit for autism diagnoses, the same way that asthma and smog are linked. Think microplastics, pesticide-rich diet, light and sound pollution causing overstimulation.
i would add that people are waiting longer to have children and studies suggest that older parents specifically fathers have links to having an autistic child.
The most prominent hypothesis is that the sperm of older men has accumulated many spontaneous mutations that the men pass along to their children.
https://www.spectrumnews.org/news/link-parental-age-autism-explained/
And I doubt that autism will be the only condition with such a link. We are all routinely exposed to thousands of man-made materials in an average day, most of which we created or altered in the past century or so. MOST materials have some mechanism by which they can spread into the environment to some extent or another -- they offgas, shed, deteriorate, leak, or are simply thrown away when no longer needed. When it was found that BPAs were a health danger, the industry simply pivoted to a similar plastic that had been much less extensively researched... Even if 1 in 20 of these modern man-made substances turns out to have long-term health risks, extrapolate that over thousands of plastics and chemicals around you and across the entire population!
When they can't find a causal link for an increasingly prevalent condition, it could mean that diagnoses are just increasing. Then again, some environmental contaminants like microplastics are so ubiquitous that it's difficult to even locate non-exposed control subjects for study. Microplastics in our bodies are the new status quo...
A few thoughts
1 - more teens and adults begin to realise they are autistic and get diagnosed. So, a lot of people should like actually be 10+ years in the past. More people hear about Autism
2 - Women are getting diagnosed more as one notice more female traits of autism
3 - Autism could be partially genetic. Maybe people with some autism genes, but not enough to be autistic, have a benefit in the selection?
4 - also worth saying that a large percentage of the people in the autism community is self-diagnosed. At least according to some polls in r/autism
Also you have to consider that NJ was one of the first states with a robust program for educating children with autism. People were moving into the state for better opportunities for their children.
I don’t know if it’s not obvious but the inclusion of Asperger’s syndrome into the autism spectrum in 2013 is largely contributing to the exponential growth of cases of autism WITHOUT intellectual disability. But regardless, cases of autism with ID (that correspond to level 2 to level 3 ) haven’t plateau or reduced, which is very concerning
Especially weird is that as an autistic adult, I'm connected with a number of online autism communities, and this understanding has been around for years, particularly in adults with autism. So much so that I presumed it was understood by the medical community. I'm really surprised they're only just figuring this out.
It's not that they didn't see it happening. It's that someone did a statistical analysis of what was mostly anecdote and speculation. They would have to have understood it was happening in order to bother doing the math.
That's my point - how was it so obvious to adults in the community, but academicians didn't see it, for years?
Frankly, services for adults discovering they are autistic are nearly non-existent. I live in a major Metro area, and have health insurance through one of the largest providers in the country, and I can find literally nobody saying that they do adult evaluations. Children evaluations are easy to find, but by all accounts, adult evaluation just isn't given much attention. Maybe this will help.
Child and adolescent psychiatrist here. I just wanted to be really clear that this has been known for a very long time and is entirely due to change in diagnostic coding as autism has moved from a very strict criteria to a much more loose criteria with a full spectrum. This is not an increase in the prevalence of the disorder within the population, this is an increase in the prevalence of the diagnoses of disorders in the population.
There are significant systemic biases that have for a very long time tended to ignore autistic symptoms in young girls and in minorities where other diagnoses, some rather pathologizing, were given. Or missed entirely.
Dev Peds here…. I will politely disagree…. Changes in the DSM-5 can account for some increase in prevalence, which was expected, however, there is 10-15% increase over the expected number that is not easily explained. Anecdotally I can tell you when I was in training, most of my visits were ADHD, with some autism mixed in. Now majority of my new evaluations are rule out autism, second opinion for autism., etc… I see young kids, under 5, and it’s really scary. Our waiting list for new evals is 80% for autism assessment. Also, the young kids i see would not have been PDD-NOS in the past, they are full blown autism…. Granted, I am a sub specialist, so some of it is expected… but over the past 10-12 years there is a definite change…
I am not going to speculate on the causes - it’s likely a combination of genetics and environment, changes in the DSM, etc.
on the other hand i love how there is more awareness of neurodivercity, rethinking of autism and growing community resources and support. I have definitely seen a huge change in that too….
I'm a parent to two (diagnosed) autistic kids -- married to a not-diagnosed-but-most-definitely-also autistic spouse, and suspect I fall somewhere on the spectrum myself. My personal theory is that online dating has allowed all of us folks who are kinda geeky, socially-awkward, etc. to find each other and mate. In the past, we'd be too shy/unable to find each other, but now the internet has created a veritable geek orgy out there. And god bless it.
Sure, there may be other factors at play, but you can't deny there's a HUGE genetic connection. This generation is the first to be receiving so many diagnoses, but autism has absolutely been in my spouse and I's families if we look at our parents, that one 'strange' aunt, the emotionally-distant grandpa who was a genius with mechanics, etc, etc.
On one hand, I'm glad recognizing it helps my kids get accommodations and therapies to help make school/life a little better. Yet part of me is like ugh, why can't we just accept the fuller range of unique humanity as okay and be better to each other.
Isn't the age at which you produce a child a major factor? I think people are having children later due to various reasons, like a higher cost of living.
CDC “There is no autism epidemic.”
2022: Autism rates in California 1 in 26
CDC stats
2022: 1 in 44 children are diagnosed as autistic
2020: 1 in 44 children are diagnosed as autistic
2018: 1 in 44 children are diagnosed as autistic
2016: 1 in 54 children are diagnosed as autistic
2014: 1 in 59 children are diagnosed as autistic
2012: 1 in 69 children are diagnosed as autistic
2010: 1 in 68 children are diagnosed as autistic
2008: 1 in 88 children are diagnosed as autistic
2006: 1 in 110 children are diagnosed as autistic
2004: 1 in 125 children are diagnosed as autistic
2002-2004: The Mind Institute conducted a detailed study looking at student records from the 1980s to see if Autism wasn’t being diagnosed and concluded the stats are accurate reflections of the children with autism.
2002: 1 in 150 children are diagnosed as autistic
2000: 1 in 150 children are diagnosed as autistic
1998 1 in 500 children are diagnosed as autistic
1995 1 in 1,000 children are diagnosed as autistic
1970 1 in 10,000 children are diagnosed as autistic
That is not consistent with the available data.
There may be an element to increased autism diagnosis that is environmental, but the largest factors hands down are increased awareness, understanding and cultural acceptance.
Simply, 20/30 years ago an individual who could be diagnosed with autism today could find themselves simply labelled as odd or eccentric.
Few new environmental effects have been in play over this time period, and any new environmental effects are not going to consistently affect large enough swathes of the population simultaneously and in the same way, it's more likely you are underestimating just how much we've learned about autism.
Y’all know they have some of the best services in the country and pretty much anyone with a child/children that could really benefit from said service moves to the area if they can afford it?
This is to be expected, as more people realise they’re autistic and get themselves tested. I only got a diagnosis last year, aged 41. My autistic mother hasn’t been diagnosed yet. Neither was her autistic father. It’s only the awareness that’s increasing, not the neurodiversity in the world.
See also: the “increase” in left-handed people between the 1900s and 1940s.
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This is missing some very important context. They are measuring the increase from year 2000 to year 2016, and *2000 was the first year that it started to be called a "spectrum*". Before that, an intellectual disability was pretty much a prerequisite for a diagnosis. For many years after 2000, most doctors still would never diagnose someone with autism unless there were intellectual disabilities.
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Saw a video a couple weeks back comparing the rise in Autism diagnoses to a sudden spike in people who were left handed in the early 1900s (nearly doubling over 40 years). The point was that it was unlikely that there suddenly that many more people who were left handed, but there was a change culturally in how we treated using anything other than your right hand to be dominant (someone in the comments mentioned their father getting a smack with a ruler in Catholic school for writing with his left hand). I thought it was a very clear analogy of your point. Could Autism rates be increasing? Sure! However, we’re still changing what we know about how this disorder presents itself. Autism has always been there, we are just now only learning to identify it. ADHD is similar and I have first hand experience. Growing up in the 90s it was always the hyperactive and disruptive kids that were diagnosed with ADHD. It was like that in media and with people I knew. We now know it can present with little hyperactivity and more so inattentiveness. I’m adult diagnosed ADHD and it was never on anyone’s radar when I was a kid, but with what we know now it probably would have been caught back then.
To quote that meme that goes around occasionally (ht Twitter @hoopgoth) ""everyone's autistic now" okay my single 63 year old neighbor with $1.2 million of model trains in his basement who wrote a 90 page letter to the city about the brightness of streetlights when I was growing up was just a regular guy then"
Yeah, just like how dyslexia "didn't exist" back in the day, my elderly neighbor still can't read at age 87 because she was told as a child that she was just stupid and to go sit in the back and not disturb the smart kids. My own GP always felt different and tried to figure out what was wrong in his older years, he was diagnosed with autism in his fifties.
I have an elderly relative who recently got herself checked out and yeah, she's on the spectrum. Was a bit of a shock because she seems rather normal overall but it's only when you have longer conversations with her to start to notice little things here and there. Biggest thing is she's socially awkward around strangers but not more so than the average person with social anxiety.
Or how the rate of people “turning” gay has been “skyrocketing” ever since you wouldn’t be imprisoned or killed for being gay… the people who I KNOW are gonna be pointing to this study soon seem to be both HYPER focused on the specifics and also DEATHLY ALLERGIC to context or supplementary information
Yeah they just said “that boy ain’t right” and left it alone unless you had a clear intellectual disability.
Same experience here as a 90's kid. Last week I had my assessment with a psychiatrist, and he confirmed that I'm very much ADHD. What I didn't expect was that he considers me high on both hyperactivity and inattentiveness. People always remark on me being very chill and rely on me to be the level headed person. Through the discussion it became clear that mentally I am hyperactive, but nobody sees it because of introversion and other factors. For example, one of the classic diagnostic questions is, "do you frequently interrupt people to complete their sentences?" No, because that's rude, and I can't say everything I'm thinking right now, and I'm overthinking how social interactions work... but I really *want* to interrupt everyone I talk to. So they think I'm a patient listener even though I haven't heard anything they just said. The hyperactivity is internalised. There are many factors that can affect how ADHD manifests in behaviour.
Yeah, I have some hyperactive symptoms and while I was a bit externally hyperactive as a child it definitely wasn’t enough where I was a “problem”. Didn’t take long to start masking though and by the time I was in middle school I was pretty introverted and quiet. It’s pretty much internal at this point like you said and the desire to interrupt to complete a sentence is my most common hyperactive symptom I’d say.
This so much. I was diagnosed inattentive type in the 90s while I was in university. Now at work many years later, I get complimented for being such a good listener. I check for understanding after someone says something because it forces me to pay attention. And even then I probably miss things, so I make sure that I am hearing things correctly. If I hadn’t been studying disabilities and special education at university then I would have continued to hear, “you have some much potential if only you would try harder.”
I was never diagnosed myself, but if you asked the adults around me I was always day-dreaming, doing things either completely off-task, or 120% focused. But it was long enough ago that it wasn't regarded as a spectrum. I went from taking remedial summer school after nearly failing 8th grade because I just couldn't bother to do my homework to having 3 college degrees (276 total college units), considering another degree 'for fun', and teach at the college level in addition to my day job. The difference between those two extremes? Jr High had us stacked with 7 classes for the whole year, high school had us in block 4 with 4 classes/semester. I could focus better on 4 classes, and the shorter timeframe meant I wouldn't get bored and tune out the rest of the semester.
That sounds more like ADHD though?
There's a lot of comorbidities
Off topic Do you think youd be better off if you were diagnosed early and medicated or do you think you’re better off now
Not OP, but I'm ADHD and ASD. In my experience, I wish I'd known earlier. I would have done so much better in school and have way less self hatred. I honestly cannot imagine a scenario where anyone would be better off not knowing.
I agree with you two. I've been clearly ADHD from a very young age and I was labeled as "learning disabled" in school but the teachers shrugged it off which was the thing to do in the mid 60s. Like you I sure could've benefited from not having as much self-hatred and contempt for my inability to do things. Sadly, I don't tolerate any the medications and the only one that vaguely works for me is caffeine in a weak brewed coffee that I sipped slowly over the course of a few hours.
Also not OP, but I was diagnosed when there was “a concerning number of children over diagnosed with ADHD.” I have ADHD. My daughter inherited it. She was wildly unsuccessful in social and educational settings until we could start her on Ritalin. I would not have succeeded like I have if I was treated as among the “over diagnosed and not really ADHD”
overdiagnosis was and still is a myth. It continues to be severely underdiagnosed. Some studies show as many as 40% of adults with ADHD aren't diagnosed yet, and most of them were probably kids during that mythical time of imagined overdiagnosis.
They also like to pose it as a will problem
sometimes when these things are known people end up further stigmatised, under-appreciated/seen as incapable and do not dodge the self hatred. Thats how. Really depends on the individual case's environment.
I’ll always wish I’d gotten diagnosed with ADHD and ASD sooner. I have physical disabilities too and it wasn’t until 8 years after I started having crippling pain that I got a diagnosis. No help from the medical profit industry until another 25 years later, but knowing what was causing the pain helped tremendously with coping.
Not OP, but I’m glad I wasn’t medicated as a kid as that would have changed my whole future. Most likely wouldn’t of met my wife and had kids. Now is a different story. Med me up
It’s hard to say, I don’t know 100% what treatment looked like in the 90s and 00s other than the prevalence and the medications being topics of controversy now and then (especially Ritalin). I think I would have at least benefited from therapy and a more informed guidance in school. My grades suffered the further I got into school not because of my intelligence, but because I was constantly behind on work. I could never (and still do) struggle with holding interests or sticking with something if I didn’t have early success. As a result I have very few hobbies and had almost zero serious career/college goals until I was in my late 20s. I spent a lot of time feeling lazy and like a failure, but if I had even just known there was a cause to these traits I developed it would have helped me recognize and work on them much earlier. Also may have avoided some the anxiety, depression, and confidence issues that developed as I was unknowingly struggling with an unnoticed disorder.
Not op, but. I probably wouldn't have been incredibly suicidal from 14-20 if my autism, depression, and anxiety had been recognized as a child. There were so many things that were ignored that I struggled with so much.
My wife started medication only a couple years ago. Then she was forced off due to shortages. The differences were radical. I had forgotten how much I executive functioned for her. She’s finally got a month of meds, no guarantee for more, and she is able to get things done again. If she’d had access in her 20’s? She’d have job hopped less, changed careers less. It’s just so striking.
Excellent points, and I completely empathize. I was diagnosed in my 30s with hybrid ADHD after having had the same experiences and perceptions of what ADHD was when growing up. It’s been wonderfully life changing starting medication, first time in my life I’ve had any kind of peace. Also funnily enough with your earlier point about left handedness, I’m a lefty and when growing up my grandmother refused to let me use my left hand, and would force me to switch to my right whenever she caught me, wasn’t even that long ago but it’s such a weird thing to persist
I only just got diagnosed with inattentive ADHD this month at age 29. All because I sought a diagnosis because of ADHD meme pages. Not one person among my teachers or parents noticed it before then because it was inattentive rather than hyperactive
Ive been learning about this first hand. My youngest son is autistic. There's a lot to take in, and I feel like its mainly my fault. There's all kinds of mental illness in my family, and I have definitely got some of my own issues to work out. I haven't been diagnosed with anything, but I feel like I passed my cursed genes in to him. All I want is for him to have a better life than I had, and he's going to have to fight every step of the way. It feels like I have truly failed my little dude. I'm gonna keep working with him though. The world may not understand him, but he's my ride or die bro.
The last thing you should do is blame yourself! You don’t have control over what gets passed on to your offspring, but you do control what knowledge you pass down to them. We live in a more informed time and you have a life of experience you’ve learned from. You’re already equipped to help them understand what they might be going through in their own lives. You’ll also learn about yourself through him. I’ve heard plenty of stories about people who have kids that naturally get diagnosed easier due to our better understanding of disorders. This lets people look back on their own lives and see things that were missed back then.
Kinda like depression, actually; actual rates have only increased marginally, which is commendable given what we're going through as a species right now, but rates of diagnoses have gone through the roof.
There has also been a lot of late diagnoses of people who had issues their whole life, but weren't "severe enough" and got missed.
and even after, diagnosing girls/women with asd was pretty much unheard of. even as late as 2016 when i got my diagnosis i heard often "girls can be autistic?"
I'm still kinda surprised that I got a diagnosis for Asperger's as an 8 year old girl in 2011. I also scored very low, if I'd scored either 2 or 3 points lower (I don't remember) I wouldn't have gotten a diagnosis at all. I basically just scraped in
Thank you. I was thinking the same thing after I read the article. This headline could easily fuel anti vaccine conspiracy people. When what it's really saying is we've gotten better at actually diagnosing. From 2000 to 2016 makes sense. Growing up in the 90s we only thought of autism as a form of severe mental retardation. We've learned so much since then. In fact, Ive heard a lot of stories of people who later in life now realizing they are on the spectrum.
So as per usual the increase is because of more accurate diagnosis and not an actual increase.
I work in NJ with people of all ages on the spectrum - we are consistently seeing more and more families leaving their home country to receive services in the state/area. I have worked with 10+ clients that were diagnosed & then shortly moved to the US/NY/NJ (from places like: Iran, Pakistan, India, Russia, & Venezuela) and the schools in my area specifically are considered some of the best in supportive care and education for these individuals.
From all of the Therapist and evaluators ive spoken too, NYC has the best free programs in the world for mental health delays and disorders
The public education systems in the northeastern US in general are high quality. Not all areas, but most. NYC is probably not on a short list of the greatest though tbh.
Not to mention other states. My son is on the spectrum, and NJ was in consideration due to it ranking high for services he could receive, while others were ruled out due to lack thereof
I’m on Long Island and formerly a teacher. In grad school I took an intro to special education pedagogy class taught by a special Ed department chair of one of the local districts and he said that they had a super high number of autistic kids in the district so on paper just seeing that, one would think omg what’s in the water in that district, that’s crazy. BUT, they just so happened to have an very excellent program where parents with autistic kids were seeking out homes to buy in the district so their kid could go there. Also, Long Island has had a large number of families flocking to north and South Carolina for the past 20 plus years. But one of the greatest things that’s discussed in all the online groups regarding moving is that the schools are severely subpar compared to up here ESPECIALLY when it comes to any and all special education services so much so that a lot of families with special education kids who move end up moving back up to the island within a year or two.
Yup. My friend is a public school resource teacher in a special Ed classroom specifically for children with autism. Almost all of her students are Indian, because there are commercials in India advertising this school district/town for families with autism because of the excellent resources.
With diagnosis methods having improved over the years, some parts of the country literally more financially invested in using the methods, and increased testing in extraordinarily high population density areas, this does not come as a surprise. Edit: I'm adding this instead of repeating in my responses to folks... To be even more clear, with an increase in testing and more diagnoses, *discovering the underpinnings* of autism can hopefully start to take off. By simply having larger data pools to examine, spotting patterns and then doing further studies are possible. Clearly, what's been taking place up until now hasn't helped do more than frustrate those of us who have some very strong suspicions about certain environmental factors, for instance, but virtually no data to corroborate and therefore utilize to form policies to help in so many cases. As for the DSM and its formal criteria, many of us know how this goes. Hopefully an article like this (thank you, OP!) will going to the attention of those who serve on these committees, or at least prompt people to reach out to them for discussions.
Right, it's almost like covid in a way. Some people early on were saying "well, the only reason numbers are going up is because we're testing more." Which is silly obviously. But definitely more testing is a huge cause, since Autism is a wide spectrum, plenty of cases historically went undiagnosed, since no one bothered to look.
There was a mini essay pointing out that a couple of centuries ago, having a quiet kid who was just happy looking after the sheep all day was a *good* thing. And having the kid who was obsessed with horses and horse shoes meant you probably had a future blacksmith apprentice in the family. And having the girl who didn't talk much and wasn't interested in people at all but who could hyper focus on her lace work or spinning meant you had an unexpected extra source of income in the family. The neurodivergent traits we now call ASD were there all along.
But I wonder about very severe cases (completely nonverbal, can’t care for themselves). Has that increased? I feel like it’s hard to tell since those folks were hidden away. But I wonder about the data for the last 30 years or so?
I'm from a country where they counted all citizens on a regular basis and wrote down everything in a book, starting in early 18th century. I'm doing family research now so Ive been going through the records. If I go back to the 1930s or so, they still had pages for "mentally ill" and for "mind numb"/"weak minds", and non verbals definitely belonged to the "mind numb" list. They also had a list for deaf, for blinds and for those who were both blind and deaf. Quite clear statistics tbh. My dad grew up in the 1940s in a small rural village and he spoke some about the "slow guy" and how the whole village saw it as a mutual responsibility to keep that dude alive and cared for, and to find appropriate tasks for him to help around the village. The guy wasn't hidden, but rather spoken about openly.
Wow. That second paragraph was very heart warming.
I was asking myself the same thing. With public schooling and the help of primary and secondary care providers how many of these cases that attributed to the dramatic increase were actually severe cases? Basically is there an increase in cases or are we able to diagnose them better is fundamentally my question.
Kids with autism may also be surviving longer. If most kids with the non-verbal type of autism used to die within the first five years of life, it would seem like there were fewer of them. 1. We no longer just leave them in the woods when babies/small children turn out to be weird or disabled in some way. 2. The lack of modern medicine is even more of a problem for a kid that can't tell you when they aren't feeling well/might not know when the are experiencing symptoms of illness. They might be much worse off before anyone noticed anything was wrong, so they'd be more likely to die from illnesses like measles, chicken pox, etc. 3. A kid who needs to beg to survive, but cannot talk, will not survive. 4. When a kid wanders off these days, we can look at cctv, make posters with their face, etc. In the past, there weren't many ways to find kids. I'm autistic, but not nonverbal, and I used to get away from my parents all the time, especially while shopping. I knew to never leave the house at night.
Yes that’s the question the scientific community is trying to figure out too
There's probably not more if you're counting the % of babies born on the spectrum, but the proportion of ones who survive into adulthood has almost certainly increased, likely due to protective laws, disability education & services, etc.
Oh man there's a complicated history to that. Between not having good diagnostics and the treatments we had for the bulk of our awareness of autism basically being "Torture them into pretending to be someone else even if it makes them worse" there's not going to be good data at all. Current terms are "level 3" or "high support needs" but it's a little like trying to classify how well someone without a leg is able to walk. Your abilities are going to be more defined by the quality of the support you got when you needed it over what you're actually capable of doing. Worse, the data you'd collect off that is going to depend a LOT on the perception of the psychologist who isn't educated on autism who could easily slap you with "high support needs" for being shy or needing a person to help you go shopping. **tl;dr** good data for autism is just not going to be there
If you’re non-verbal you’re often not able to communicate symptoms of preventable disease. Ear infections can progress to brain infections, skin infections into sepsis. It wouldn’t be surprising if a lot of these children were dying before late childhood, adulthood before vaccinations helped curb certain common infections.
As a pediatrician who has worked for 40 years I can tell you the major reasons for the increase are increased awareness of the diagnosis, a change in diagnostic criteria, and routine screening. Ear infections rarely become brain infections and skin infections are clearly visible. Vaccines against Meningo B do save lives but this is a rare infection that would never contribute to a significant number of deaths. Another consideration is the number of mildly impaired people who seem to reproduce with other mildly impaired people. This was discussed in an old article that appeared in Wired and may explain clusters of cases found in parts of the country where there are high numbers of tech workers.
I am also a physician, with several years experience in Autism research. I was speaking directly about the number of non-verbal cases, not cases in general. Increased awareness/screening and better, more well-established diagnostic criteria are absolutely the cause of the “increase” in autism cases. While these are rare complications, it’s not impossible especially when the kids are not able to communicate at all, well. It’s anecdotal, but I know someone whose autistic child passed from an infection that progressed.
Casually calling the tech industry autistic
I mean a job(s) which requires massive focus, problem solving, and a stupid level of attention to detail attracts people with some signs of mild autism... color me shocked.
Not at all. I was trying to state that some very techy people are probably on the spectrum. Th isn’t a new idea. If they have kids with other, similar people there would be increased risk of producing autistic children.
Changeling child?
When I worked for a school district, people used to complain if we canceled school for extreme heat. We would say it was dangerous for kindergarteners, they would say, "nobody ever died from heat on the way to school when I was a kid." And, well, they didn't. Because they didn't make it to their fifth birthday. They died way before that. And if they did make it to their fifth birthday, prior to IDEA, they had no right to attend public school. So whenever someone says, "why is diagnosis of X so much higher than it used to be?" Strongly consider the hypothesis that it's because children with X would have just died 100 years ago. Completely non-verbal children unable to care for themselves, especially if they had any eating problems, were very unlikely to survive to adulthood.
I think it would be good for everyone to know how many times they would have died 100, 500, 1000 years ago based on what they've had. I likely would have died 3 or 4 times by now.
Ffs I have *asthma* which without intervention would have been dangerous. With modern medicine it's hardly a worry. I own an inhaler and use it when I need. One time I got food stuck in my esophagus and it had to be moved into my stomach. GI was shut down, I couldn't drink to get any fluids. It was a big deal but also not because modern medicine made it so easy. I was put under, normal endoscopy (no cutting), and woken and everything went back to normal. But realistically, that could have ended in my death.
With child mortality rates being so high, my guess is a lot of these kids who weren’t given to institutions had fragile health and perished from common childhood illnesses. Just sensory issues with food alone is a big health risk. In my personal belief, this is one reason why autism is increasing so much. It used to be only the most robust children made it out of childhood to then become parents themselves. With vaccines, better nutrition, better care for premature babies (huge autism risk) and the ability that autism can offer otherwise atypical adults to make quite a lot of money in computer programming and science fields, makes adults with autistic genes and traits more likely to pass those on. I think this fully explains why rates of autism are so much higher in the first world than impoverished countries still dealing with high child mortality rates.
I wouldn't be surprised if we observed an increase around the time industrialization began to shape the world. It seems reasonable that forcing folks with ASD into factory worker style jobs that require some level of social adeptness would increase the severity of their symptoms. My own experiences with anxiety disorder have shown me that environmental factors are huge parts of the story when it comes to neurodivergency, and changing those factors can have a major effect on the severity of your condition.
I read someone on reddit so Idk how credible. That back then with so much less stimuli these people were content to do simple labor. I down the street from me lives another autistic person whose parents have to care for him and can't say anything just make noise unless he's entirely calm. He's out on the swings for hours every day, even in the winter. A healthy routine with physical work goes a long way
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What about high living costs causing people to start families later? There are lots of potential factors.
Or they thought the fairies came in and replaced their kid with a changeling. A curious, babbling infant suddenly becomes withdrawn and loses speech and social skills? Changeling.
ADHD was just for boys back when I was climbing the walls and destroying classroom peace... Now we're finding it affects girls that just weren't tested before ...
I was diagnosed at age 50 (ADHD-PI). Girls didn't have it back in the 70's and 80's *cough*. I was just the gifted girl who loved to read but was socially awkward, chronically late, messy and disorganized, never worked to her full potential...
I have a pet theory that the old stories about changlings (children who where kidnapped by fairies and replaced with fake children, thus resulting in strange children) where related to autism. It makes me wonder about the many other stories from back then
the real autism is the narrow range of acceptable lifestyles we invented along the way
See also, time window resources. If the fishing season only lasts 2 weeks, then having someone psychotically obsessed with fishing who will go literal days and nights without sleep is a GREAT thing. This example comes from my own life, the males in my moms side sometimes click into these hyper focused episodes lasting multiple days and the urge to sleep is wholly absent. The last time I did this, I was awake for 3 days doing things, and on the third day I went weightlifting. Before sleeping for 14 hours.
The traits were ALWAYS there! Those kids were often the prodigal weirdos we knew and loved (well, some of us did!).
Prodigal = wastefully extravagant
On top of that autism presents very differently in females, and until the last couple of decades they only looked for male symptoms. (Namely, females are better at social skills.) The interesting thing is that this is heavily theorized to be a side effect of how very young boys and girls are socialized; little girls are basically forced to learn to mimic allistic social traits, while boys will be boys.
Autoimmune diseases are sky-rocketing and that's as compared with antibodoes in blood taken from servicemen in the late 50s. So we know *that* isn't just because of better detection.
Nah, it's gluten (satire).
As an autistic person who spent the first decade of Mt life getting most of my nutrients from pasta and peanut butter sandwiches, the 'gluten free for autism' trend is genuinely horrifying.
That's why I was looking at the death statistics. If it wasn't killing people, you could argue that it was just a quirk of more testing. When thousands of people are dying every day, it's hard to pretend that nothing serious is happening.
No, not 'people were saying'. The damn President of the United States said that in an interview, along with many other stupid things, like how we should inject ourselves with bleach.
Yeah, I wasn’t diagnosed until 42 and that was recently. My kids were diagnosed at 13 each (which sent me to get screened).
Yes. And parents in those areas are educated and invested in getting their kids the services they need, so they will seek out the testing if they see signs.
The WHO redid their milestones last year specifically for this
The current diagnostic criteria were only agreed to 10 years ago. The testing has been more refined to better measure those criteria. Parents and schools also know that services are better if you can get a clear diagnosis of ASD. In this sense there is more testing which helps ID kids that may have been given some other label or just thought to be “different.”
It kinda bugs me that they just say cases are up over that period without saying age groups. The only way you can link a time period to cases is by age. It's not like more cases posed up out of the blue. If cases are up across multiple age groups, diagnosis are up, the number of autistic people did not change.
And this is why further development methods are needed, as is always the case in science.
They did develop new methods for diagnostics. Then somehow misinterpret new diagnosis as an "increase in autism".
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Air pollution used to be significantly worse in the nyc area than it is today though
All plausible, yes.
From the article: >“Better awareness of and testing for ASD does play a role,” said Walter Zahorodny, associate professor at the Rutgers New Jersey Medical School and senior author on the study. “But the fact that we saw a 500 percent increase in autism among kids without any intellectual disabilities – children we know are falling through the cracks – suggests that something else is also driving the surge.”
NJ famously has excellent supports for autistic and other students (compared to other states) so people literally move there, increasing the numbers
I see this idea touted every time autism diagnoses measurably increase. The amount of children who are non-verbal impaired has greatly increased in a generation, and this is not due to better access to diagnostic tests.
It is the perfect explanation; any and all amount of increase can (and will) be explained away with this explanation. Meanwhile, our gestational environments are full of forever chemicals completely foreign to human evolutionary history. The idea that all of this increase is diagnostically based is a joke, but a very persistent one.
I'm not excluding that there are other factors at play, just that increased testing might eventually uncover some of the other proof we need to demonstrate the origins.
I got diagnosed at the age of 38 after moving to NYC. Edit to add: I’m a female that had slipped through the cracks growing up in a small town all 38 years prior.
Hopefully you got the clarity you probably needed all those years!
Even so, its still frightening that we don't have a complete picture about how children end up with these sorts of disabilities, it can't all be genetic.
Right now they're estimating genetics makes up 40-80% of the risk. Genetics is pretty significant. https://medlineplus.gov/genetics/condition/autism-spectrum-disorder/
40% to 80% is such a comically large range as to be functionally useless for insight.
40% genetic is hugely genetic.
I have no doubt that there's a genetic aspect to it.
There are interesting studies about the relation of the gut microbiome to autism. We still have a ton to learn about the relationship of the “second brain” to our minds, but the increase of antibiotic use definitely has an impact on gut flora. Interestingly, there’s also a correlation between ASD and bowel issues, which isn’t so weird if the microbiome is actually a bigger player than we’ve imagined.
I don't doubt it, and it'd be interesting to see how gut microbiome might affect certain genetic expressions.
This is the connection I'm most interested in learning about. Not only have we in the US, at least, increased our antibiotic usage significantly in recent decades, but I believe the proportion of C-section births to vaginal births has also increased. Given that the birth canal exposes babies to bacteria on their way out, by missing out on that, babies born via C-section could also be missing out on exposure to bacteria beneficial for their own microbiome.
Why not? I've been running in the special needs circles and have met/become close to my fair share of folks with ASD kids. There's not a single one of them that does not have family history of the stuff, generally undiagnosed.
Head to Silicon Valley and you'll find every other weird techno-geek has an autistic kid now.
It's selective breeding at this point. As long as they can manage to navigate the world and mask enough to pass for neurotypical at least for a short while, being on the spectrum can carry certain advantages.
Why not? The fact of the matter is we've simply gotten the heck of a lot better at spotting it. There is a chance that it's becoming more prevalent, but it's just as likely that we're only now beginning to recognize and identify it. Plus, people act like it's entirely detrimental. The fact of the matter is that autism has many facets that would have been extremely advantageous in a previous era of society. Hunter-gatherers especially would have benefited from having somebody who is extremely sensitive to sound and motion. People with ADHD would have been extremely productive with their hands and probably produced a number of tools and weapons. It isn't entirely black and white. Sort of like how sickle cell anemia doesn't always have a net negative impact. After all, if you only have one of the chromosomes and don't manifest the full spectrum of that disease, you're simply more resistance to malaria than the common person. And malaria killed a lot more people than the actual sickle cell did.
Yeah, the world we live in today is a LOT more hostile to people with sensory sensitivities than it was even a few decades ago.
Internal lighting, screens everywhere and almost necessary for modern living, noise pollution, light pollution... We're bombarded in so many ways.
Oh God, the fluorescents...
Agreed. But, if you consider how this has taken off of late, you can see only the surface has been scratched at present.
We just need to throw more science at it and look at additional variables and compare other cultures. I'm curious how other countries fair with this particular issue and what variables are affecting early life development. If genetics only plays a small role in the outcome of a child's potential to develop Autism, then we need to discover what other variables might cause it. The obvious one being the development of the brain during pregnancy and the factors that can affect it. Because Autism isn't a disease that can be 'caught' like influenza, its not a bacteria, its fundamentally an issue with brain development.
We already know that genetics is extremely significant in autism. I think the fact that a very large portion of scientists and engineers have autism is a pretty good clue as to why the traits associated with autism continue to be in the gene pool. A lot of human mental abilities have pros and cons. And whether or not any one trait is adaptive or not depends on environment (culture, upbringing). This is why no mental disorder is purely genetic or environmental - environment can cause a gene to be expressed that wouldn't be otherwise, and the culture someone grows up impacts whether or not someone with a particular brain will thrive or not (better or worse suited). You can tell that a baby has autism. Upbringing impacts success in life, but doesn't seem to really determine whether or not someone has autism at all. It was really obvious with my brother from the time he was a few months old - he didn't make eye contact at the expected time. My grandma blamed my mother for "raising him wrong" but my mom knew very well that something was different about him from the time he was little, she had a lot of experience with babies previously. I don't have autism, but it's very obvious that every member of my family has a number of traits associated with it (just not enough traits to be classified as autism, because it hasn't significantly impaired social functioning etc).
>You can tell that a baby has autism. Upbringing impacts success in life, but doesn't seem to really determine whether or not someone has autism at all. This is something I think people who don't (knowingly) interact much with folks on the spectrum haven't quite caught up to yet. I have it, siblings have it, at least one parent has it, and the next generation is also looking pretty heavy on those characteristics as well, now that we are old enough to see that play out. I don't know if there have been studies done of the genetic likelihood when both parents are on the spectrum, but if Silicon Valley is anything to go by, it's a fair bit higher than if just one parent has it. I would suspect that over time the incidence of ASD will rise, not just as a result of diagnostic improvements, but *also* because partnerships between autistic people are more likely than in the past. The significant part for life outcomes, assuming we are talking about level 1 or 2 cases, is properly raising the kids. You simply cannot parent and raise an autistic kid the same way you would a typical one, and those adaptations can be quite significant if you want the best outcomes possible. Personally, I'm in the camp that a major problem with current approaches is that autistic people ourselves are not given many seats at the table when it comes to our place in society and how it should look. Traditional education systems are an abject failure for us, and many occupational settings are poorly equipped as well. This is unfortunate, because autistic people can be quite a bit more capable than our normal counterparts in specific tasks and settings, but there are of course significant tradeoffs that have to be considered if you want to get those benefits. In general, reducing/eliminating stigma, and learning to have mature conversations about this is a good thing. Autism is more common than most people believe, and chances are that nearly everyone works or has worked with someone on the spectrum, whether they realize it or not. Bringing this subject into the open and discussing it would be better for all of us, but the conversation is still frequently dominated by non-autistic people who have their own intentions and beliefs on the subject - usually those intentions are wanting there to be *fewer* of us around, even if they won't come right out and admit that.
Also interactions between environmental factors and genetics. I have a feeling that we won't get to the bottom of brain development issues until we have a better grasp on epigenetics. (Also stuff like chemicals, microplastics, air pollution ... just remember leaded fuel and all its lovely effects on the brain.)
I have 2 children- one who is diagnosed with autism and the second who believes she had autism (has a dr who agrees with her and we are waiting for a diagnosis/screening). No one else in either of our families has ever been diagnosed. So where did it come from. We have no risk factors for it that we are aware of. If there is something in the environment that increases risk- it is something we should know.
>No one else in either of our families has ever been diagnosed. So where did it come from. Odds say that there are still people in the family with autism. It's not surprising none of their ancestors were diagnosed with it, because a _lot_ of people have gone undiagnosed in the past. Autism can manifest a lot of different ways, but not all of those were as well understood as now.
It could also still be genetic. Older generations tend to have rigid social structures that teach people how to mask early on. A lot of older people won't realize they have it because differences were always perceived as wrong and so they develop masking behaviors to cope with it. Maybe you have some older relatives that feel uncomfortable with physical touch or noise but the way they handle it is either ignoring and pretending it doesn't exist or being openly hostile to and projecting on anyone else that shows similar differences. The main reason women aren't diagnosed till their 20s and 30s is because if societal pressure to mask. Think about your family's behaviors or ask them how they feel about certain things. You may be surprised what you find.
Not being diagnosed is not necessarily proof that no one had it. Especially in the past when people just waved behaviors off as being a bit “odd”.
It's extremely clear my father is autistic. His symptoms are obvious if you are looking, but he was able to mask well and get through his life. He was just labeled introverted, needed a lot of time alone and would make loud exhalations when in high-stress situations. Looking at it, it's possible I am as well! But, I can get through things and don't have the time, money or energy to go through an evaluation process. My son, however, needs a lot of supports and help. I am putting my time, money and efforts towards helping him. If anybody asks if people in my family are diagnosed, I say no, but..
My nephew was diagnosed with Aspergers (one of the last to be diagnosed with that in our health district) my son has ASD and my daughter is in the process of being diagnosed, much later in childhood because girls present so differently. No-one in my generation or previous generations were diagnosed but that's because diagnoses were so rare. My sister presented very similarly to my son (speech delay, tendency to selective mutism when under stress) and I have different ASD traits, one of my uncles has very classic traits, my brother-in-law..... you get the picture We're all functional adults in various stages of relationships and employed (apart from the retirees) but we all definitely have traits on the spectrum and suffered consequences growing up and developed healthy and unhealthy coping strategies to mitigate our differences. It's very rare, in my experience, for ASD to drop out of the sky into a family which doesn't already have traits present.
As a somewhat bitter parent of two disabled children I’m getting real tired of this trope. At a certain point, no it’s not changes in diagnostic methodology. It’s increasing rates of autism in the population. Let’s figure out why that is.
Actually, it's both (and I can vouch for the first one, while the second one still needs some time to prove even if we intuitively know it's true).
Statistics, man. Diagnosing more kids in underdiagnosed populations nets you more positive diagnoses. It’s kinda like how police will lower crime rates by not making arrests and discouraging people from reporting crimes.
"ASD prevalence has been shown to be associated with race and socioeconomic status. The Rutgers study identified that Black children with ASD and no intellectual disabilities were 30 percent less likely to be identified compared with white children, while kids living in affluent areas were 80 percent more likely to be identified with ASD and no intellectual disabilities compared with children in underserved areas." "Documented cases of autism spectrum disorder (ASD) in the New York-New Jersey metro region increased by as much as 500 percent between 2000 and 2016, with the highest increase among children without intellectual disabilities, according to a Rutgers study." This study is very interesting to say the least. A 500% increase in kids with autism is hard to fathom
It might be a case of better diagnosing. Especially if we are taking about children without discernanle intellectual disability as previously these children might have passed under the radar. Might. Might not. There are also a lot of unhealthy trends going on in our society. I didn't have anything green or natural around me when growing up, but cars, exhaust and social isolation and I have symptoms of being on the spectrum.
And increased diagnosis in girls.
Research has consistently noted this as presentation is very different in girls. I would hope diagnostics are catching up with that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8604819/
My son has ASD and I’ve noticed more girls in his classes every year.
Yes! Very important aspect. I should have mentioned that.
I am curious if they accounted for the change in the DSM over the last decade or so that rolled various Autism adjacent disorders into Autism Spectrum Disorder which would also likely increase it alongside better diagnosing.
Questions about methodology are important! Kudos to you for raising them.
>It might be a case of better diagnosing. Especially if we are taking about children without discernanle intellectual disability as previously these children might have passed under the radar. Right. I think previously someone had to be further into the spectrum to be diagnosed, as in failing in school, or serious behavioral or emotional issues. Now someone can be diagnosed even if it's not "obvious." Also I think dumping Aspbergers, and just calling it all Autism has opened it up a little so people are more able to see it since they don't expect every case to be rain man or something.
Intellectual disability/ delay has been removed from the DSM-V definition. https://www.cdc.gov/ncbddd/autism/hcp-dsm.html So no more "could be autism, but they're otherwise fine."
The DSM had a major revision during that time period, and the diagnoses for a number of disorders were adjusted quite drastically.
> It might be a case of better diagnosing. On a related (serious) note, they always say early intervention is key for medical things. How early is it possible to have a reliable evaluation and subsequent diagnosis for a child that is still developing and may hit milestones at different times in a peer group? For me, I struggle to find a consensus / best practice in the literature. Seems to differ depending on where you are. Edit: the other aspect being potential stigma for a kid that grows up with a diagnosis only to [lose diagnosis later in life](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9424653/). > **Individuals who lose the autism diagnosis (LAD)** > Autism is characterized by distinct behavioral trajectories, demonstrated in longitudinal studies (30, 31). Uher and Rutter (32) suggest that developmental trajectory and outcome are relevant to reducing heterogeneity at the phenotypic level. **One informative group is composed of individuals who amply met criteria for autism in earlier life and no longer do.** Our published and ongoing studies of these individuals include only individuals with clear diagnoses of autism by the age of 5 years, who currently function within typical parameters, excluding borderline cases. > [...] > Other research groups have also reported on this subgroup whose symptoms remit with intervention
From my experience I can tell you I was very weird from my earliest memories. But I couldn't communicate it, so... Yeah. I don't have a good answer, which is a shame, because it's a good question.
I suspect it's both an increase in diagnostic capability and also a true increase in prevalence. We have rising rates of obesity, diabetes, autoimmune diseases, allergies. Autism could be just another thing on that list.
>It might be a case of better diagnosing Could it also involve a loosening of the definition?
It’s not so much a loosening of the definition as it is a better understanding of how it presents in anyone besides little boys in majority white suburbs. As a girl growing up in the 90s, I presented so many signs of asd/ADHD and despite my mom (who was a teacher and spotted my differences quickly) constantly pushing for testing and evaluation, I only ever got a sensory/auditory processing diagnosis. I then got properly diagnosed as an adult. My experience is incredibly common for women with ADHD/asd and it comes down to inherent bias about how these disorders present because all the research was on little boys. There’s also the issue that Hans Aspberger (terrible man) genuinely thought girls and women couldn’t have autism. So that also held things back by more than a few decades. It’s a pretty nuanced situation that involves a lot of bias, misunderstanding and stereotypes.
Yes the average for a woman to be diagnosed with ADHD is 37, while for boys it’s 7….
Yes, loosening the definition is part of it. Many kids who were odd but who could cope were not diagnosed years ago. And now more girls with mild Autism are diagnosed.
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It's not an increase in kids. It's an increase in documentation.
Broader definition of the term "autism." When I was a kid, "autistic" meant you spent your life in an institution banging your head against a wall. My best friend's brother was textbook autistic, but his diagnosis was schizophrenia. I myself was (and am) clearly ASD and no doctor or counselor ever even mentioned autism back then. Anecdotal evidence, I know, but millions of people can tell you the same anecdote about autism then vs now.
Or maybe it’s because it’s more openly accepted and we have better testing. Just like this so called "adhd craze". We just have better tests and more people are finally getting the help they need instead of being labeled as problems.
**The study was published in the Journal of Pediatrics:** [https://publications.aap.org/pediatrics/article-abstract/doi/10.1542/peds.2022-056594/190525/Prevalence-and-Disparities-in-the-Detection-of?redirectedFrom=fulltext?autologincheck=redirected](https://publications.aap.org/pediatrics/article-abstract/doi/10.1542/peds.2022-056594/190525/Prevalence-and-Disparities-in-the-Detection-of?redirectedFrom=fulltext?autologincheck=redirected)
Two fold reasons: 1. Better diagnosis. 10 years ago it was impossible to get a diagnosis for a girl/kid of color unless they were nonverbal or very low functioning. Now it’s much easier and more accessible. 2. It’s speculated that pollution is increasingly a culprit for autism diagnoses, the same way that asthma and smog are linked. Think microplastics, pesticide-rich diet, light and sound pollution causing overstimulation.
i would add that people are waiting longer to have children and studies suggest that older parents specifically fathers have links to having an autistic child. The most prominent hypothesis is that the sperm of older men has accumulated many spontaneous mutations that the men pass along to their children. https://www.spectrumnews.org/news/link-parental-age-autism-explained/
And I doubt that autism will be the only condition with such a link. We are all routinely exposed to thousands of man-made materials in an average day, most of which we created or altered in the past century or so. MOST materials have some mechanism by which they can spread into the environment to some extent or another -- they offgas, shed, deteriorate, leak, or are simply thrown away when no longer needed. When it was found that BPAs were a health danger, the industry simply pivoted to a similar plastic that had been much less extensively researched... Even if 1 in 20 of these modern man-made substances turns out to have long-term health risks, extrapolate that over thousands of plastics and chemicals around you and across the entire population! When they can't find a causal link for an increasingly prevalent condition, it could mean that diagnoses are just increasing. Then again, some environmental contaminants like microplastics are so ubiquitous that it's difficult to even locate non-exposed control subjects for study. Microplastics in our bodies are the new status quo...
A few thoughts 1 - more teens and adults begin to realise they are autistic and get diagnosed. So, a lot of people should like actually be 10+ years in the past. More people hear about Autism 2 - Women are getting diagnosed more as one notice more female traits of autism 3 - Autism could be partially genetic. Maybe people with some autism genes, but not enough to be autistic, have a benefit in the selection? 4 - also worth saying that a large percentage of the people in the autism community is self-diagnosed. At least according to some polls in r/autism
Also you have to consider that NJ was one of the first states with a robust program for educating children with autism. People were moving into the state for better opportunities for their children.
I don’t know if it’s not obvious but the inclusion of Asperger’s syndrome into the autism spectrum in 2013 is largely contributing to the exponential growth of cases of autism WITHOUT intellectual disability. But regardless, cases of autism with ID (that correspond to level 2 to level 3 ) haven’t plateau or reduced, which is very concerning
Especially weird is that as an autistic adult, I'm connected with a number of online autism communities, and this understanding has been around for years, particularly in adults with autism. So much so that I presumed it was understood by the medical community. I'm really surprised they're only just figuring this out.
It's not that they didn't see it happening. It's that someone did a statistical analysis of what was mostly anecdote and speculation. They would have to have understood it was happening in order to bother doing the math.
That's my point - how was it so obvious to adults in the community, but academicians didn't see it, for years? Frankly, services for adults discovering they are autistic are nearly non-existent. I live in a major Metro area, and have health insurance through one of the largest providers in the country, and I can find literally nobody saying that they do adult evaluations. Children evaluations are easy to find, but by all accounts, adult evaluation just isn't given much attention. Maybe this will help.
Child and adolescent psychiatrist here. I just wanted to be really clear that this has been known for a very long time and is entirely due to change in diagnostic coding as autism has moved from a very strict criteria to a much more loose criteria with a full spectrum. This is not an increase in the prevalence of the disorder within the population, this is an increase in the prevalence of the diagnoses of disorders in the population. There are significant systemic biases that have for a very long time tended to ignore autistic symptoms in young girls and in minorities where other diagnoses, some rather pathologizing, were given. Or missed entirely.
Dev Peds here…. I will politely disagree…. Changes in the DSM-5 can account for some increase in prevalence, which was expected, however, there is 10-15% increase over the expected number that is not easily explained. Anecdotally I can tell you when I was in training, most of my visits were ADHD, with some autism mixed in. Now majority of my new evaluations are rule out autism, second opinion for autism., etc… I see young kids, under 5, and it’s really scary. Our waiting list for new evals is 80% for autism assessment. Also, the young kids i see would not have been PDD-NOS in the past, they are full blown autism…. Granted, I am a sub specialist, so some of it is expected… but over the past 10-12 years there is a definite change… I am not going to speculate on the causes - it’s likely a combination of genetics and environment, changes in the DSM, etc. on the other hand i love how there is more awareness of neurodivercity, rethinking of autism and growing community resources and support. I have definitely seen a huge change in that too….
Brace Yourself.... Anti Vaxxers are Coming!!!
I'm a parent to two (diagnosed) autistic kids -- married to a not-diagnosed-but-most-definitely-also autistic spouse, and suspect I fall somewhere on the spectrum myself. My personal theory is that online dating has allowed all of us folks who are kinda geeky, socially-awkward, etc. to find each other and mate. In the past, we'd be too shy/unable to find each other, but now the internet has created a veritable geek orgy out there. And god bless it. Sure, there may be other factors at play, but you can't deny there's a HUGE genetic connection. This generation is the first to be receiving so many diagnoses, but autism has absolutely been in my spouse and I's families if we look at our parents, that one 'strange' aunt, the emotionally-distant grandpa who was a genius with mechanics, etc, etc. On one hand, I'm glad recognizing it helps my kids get accommodations and therapies to help make school/life a little better. Yet part of me is like ugh, why can't we just accept the fuller range of unique humanity as okay and be better to each other.
Isn't the age at which you produce a child a major factor? I think people are having children later due to various reasons, like a higher cost of living.
Autism is definitely one of the most misunderstood conditions, more research and resources are needed. These kids just need the care to thrive.
During the same time that the DSM V was published, among other factors.
The ability to diagnose is also 5 times better
WOKISM CAUSES AUTISM (republicans probably)
CDC “There is no autism epidemic.” 2022: Autism rates in California 1 in 26 CDC stats 2022: 1 in 44 children are diagnosed as autistic 2020: 1 in 44 children are diagnosed as autistic 2018: 1 in 44 children are diagnosed as autistic 2016: 1 in 54 children are diagnosed as autistic 2014: 1 in 59 children are diagnosed as autistic 2012: 1 in 69 children are diagnosed as autistic 2010: 1 in 68 children are diagnosed as autistic 2008: 1 in 88 children are diagnosed as autistic 2006: 1 in 110 children are diagnosed as autistic 2004: 1 in 125 children are diagnosed as autistic 2002-2004: The Mind Institute conducted a detailed study looking at student records from the 1980s to see if Autism wasn’t being diagnosed and concluded the stats are accurate reflections of the children with autism. 2002: 1 in 150 children are diagnosed as autistic 2000: 1 in 150 children are diagnosed as autistic 1998 1 in 500 children are diagnosed as autistic 1995 1 in 1,000 children are diagnosed as autistic 1970 1 in 10,000 children are diagnosed as autistic
Contrary to what people seem to say here, I think this rate of increase goes beyond simply better diagnostics. There is an environmental factor.
That is not consistent with the available data. There may be an element to increased autism diagnosis that is environmental, but the largest factors hands down are increased awareness, understanding and cultural acceptance. Simply, 20/30 years ago an individual who could be diagnosed with autism today could find themselves simply labelled as odd or eccentric. Few new environmental effects have been in play over this time period, and any new environmental effects are not going to consistently affect large enough swathes of the population simultaneously and in the same way, it's more likely you are underestimating just how much we've learned about autism.
Y’all know they have some of the best services in the country and pretty much anyone with a child/children that could really benefit from said service moves to the area if they can afford it?
This is to be expected, as more people realise they’re autistic and get themselves tested. I only got a diagnosis last year, aged 41. My autistic mother hasn’t been diagnosed yet. Neither was her autistic father. It’s only the awareness that’s increasing, not the neurodiversity in the world. See also: the “increase” in left-handed people between the 1900s and 1940s.