Today the CDC announces autism rates have surpassed 3% of U.S. children, including 5% of boys. The health secretary may be wrong on vaccines, but the data support his insistence on a true increase.
I have worked with children with autism for 36 years. I have a grandson with autism. So I know what real autism looks like. And there has definitely been a sharp increase in the last 10 years or so. Yes, some of it is the larger parameters we use to diagnose autism (many who I think are misdiagnosed), but there has DEFINITELY been an increase in the numbers of children with more severe autism as well. Ask any prek- through grade 5 teacher. Ask any school district that is having to create more self-contained autism programs. It is real. I am not talking about the kid who used to be considered a nerd who gets good grades and who has an obsession with Pokémon who we now call autistic. I am talking about kids who are non or minimally verbal, who need ABA and AAC devices, very specialized instruction,and one:one para support. It’s a topic of conversation we often have in our sped meetings.
Ellie, I want to thank you with everything in me for your voice in this space. You are spot on. As a parent of two non-speaking autistic children, I can confirm that what you’re seeing is exactly what we are living. The increase in complex autism is real and it’s not just due to better diagnosis or broader criteria. We are witnessing a surge in children who require intense, lifelong support …children who are not “quirky” or “gifted but different,” but who are non-speaking, have co-occurring apraxia, and often require 1:1 support just to get through the school day.
You nailed it when you drew the distinction between “Pokémon-obsessed kids with high test scores” and the children who are often completely left out of the public conversation because they are not on TikTok, not making memes, and not writing Medium posts. My children are bright and beautiful, but their communication is through AAC and their struggles are profound. We need more professionals like you who acknowledge the reality and complexity of what families like mine live every day. Thank you for speaking up with clarity, compassion, and conviction. I wish your voice could be amplified across every school district in this country.
I think a few things can be true at the same time. Yes, I agree there is an uptick in profound cases. Yes, I agree that parents want their nerdy kid to be labeled as something other than "nerd". And yes, I believe that something is going on with the DSM/testing issue.
Personally, I believe chemicals in our food/environment play a very big role in a lot of our illnesses. We are what we eat/drink/breathe.
That's interesting. I have been curious about that, and asked a person at our school district last year when they were trying to get a bond issue passed. (I live in a small San Francisco suburb with a four elementary school district.) She said they have not seen an increase in non-verbal cases, just high-functioning cases.
I would respectfully offer that smaller or more affluent districts may not yet be seeing the same intensity or complexity of need that larger urban or mixed-income districts are reporting. That doesn’t negate your experience but it may mean we’re dealing with a patchwork of very different realities depending on location, resources, and even cultural attitudes toward early intervention and diagnosis.
I think that is very suspect and a very good reason why schools should NOT have anything to do with an Autism diagnosis. More IEP's mean more Fed $$$$ through IDEA.... AND more teacher burn out as they have to differentiate curriculum for too many children. We saw this same thing happen with ADD/ADHD....so just medicate those boys into compliance who learn best when they are run like racehorses.
I agree that teacher burnout is real. Very real. However, for many families like mine especially those raising non-speaking autistic children the school is often the only place where meaningful support, structure, and developmental progress can happen. Without school-based assessments and services, many children would fall through the cracks completely. While the system has flaws, removing schools from the diagnosis and support process entirely would be devastating for those who lack access to private specialists or can’t afford lengthy diagnostic evaluations. We need reform, yes but not removal.
And I think that is a HUGE problem. There is absolutely nothing wrong with most of these kids. I do think there are HUGE problems in public schools that the "deform" movement created and have been exacerbated by phones and other technology...and by parents that aren't willing to handle behaviors at home (gentle parenting!).
Thank you so much for your response. I speak from my professional experience but also as a grandmother. No history of autism in my family , but the love of my life- my six year old grandson, is minimally speaking- also with an AAC device and high support needs. so I am not just invested in this as a teacher, but as a family member.
We also get a lot of referrals in my district from developmental pediatricians who determine that these students have autism without doing autism assessments (e.g ADOS or other formal diagnostic tools)and just relying on parent interviews without input from school professionals. Kids we do not see signs of autism in at all in the school setting. Meanwhile, they have a diagnosis on record. Not sure how common this is across the nation, but these are coming from multiple MDs.
It is interesting. Mine is an urban district and I know of at least two others that have been seeing the same. But of course it is not the same as having hard numbers across an entire country. The data of this article is therefore very interesting to me.
I tried to talk about as many theories about autism as possible in this (very long) essay and to examine evidence for them … definitely missed some factors though.
I didn’t highlight this in the essay, but a lot of the proposed environmental toxins and nutritional factors were introduced or became widespread at two key points — the late 70s or early 80s, and the late 90s.
The timelines you pointed out late ’70s/early ’80s and late ’90s align closely with spikes many of us have witnessed in severe autism diagnoses, especiallyyyyy among those who are non-speaking and need intensive supports. I’d love to see deeper exploration into those environmental and nutritional shifts, too.
You might appreciate the essay I linked to! I go into a lot of detail on the environmental, nutritional, and pharmaceutical factors. The key point is that autism is not a single condition, but an umbrella term for chronic neuroinflammation that can be caused by any number of factors, with no factor applying to all cases and no case having only one factor. You could take 100 autistic kids and have 100 different causal profiles. But I think the biggest causes of the spike in severe cases are processed foods / nutrient deficiencies, glyphosate, and heavy metals (including vaccines) -- all interacting with each other.
This is a deeply complex biological and inevitably political issue.
If we shifted our perspective to, “We are increasingly aware of the the numbers of people who are autistic” we would be better placed to look at causation”
The typical response is however to seek a simple answer, simple answers that almost certainly don’t exist.
Let’s look at another complex disease as a model for autism, Type 2 Diabetes. It too is has a high heritable causation. Some unlucky individuals have a package of alleles that cause diabetes very early in life, others have a gene set that the impact only shows up later in life.
The difference is, we largely know that the expression of pathological signs and symptoms of diabetes are triggered by external factors like a western diet, stress low exercise.
Latest data shows that inheritance of a large subset of “autism” versions (alleles) of genes predisposes people to autism.
Once again, some gene sets will exhibit early in life whilst others may present later.
We cannot ignore the impact of environmental factors in both conditions but diving head first into “accusing” one factor is entirely unscientific.
Finally, let’s return to increasing incidence and the descriptors of autism (generally behavioural). The more ‘challenging’ autistic behaviours appear to be perfecly natural, amplified, responses to environmental overwhelm.
Could it be that the overall intensity of modern life pushes more children genetically predisposed to autism to exhibit their underlying generic mind type?
Consider a world where just like Type 2 Diabetes it’s our toxic cultural lifestyle that reveals our genetics?
Once the early trauma happens the emotional wounds last.
The incidence is rising because of two things - we’re looking more closely, and we are culturally more toxic.
If this is true, the neurotypical majority always look to lay blame on the minority rather than themselves.
Political simplicity pour fuel on the fire of ingorance.
One of many q’s is transnational comparison — diagnosis trends in other countries
SES data intrigues. Curious if any research has been done on parental occupations. I’ve never seen anything but anecdotal evidence for common belief that tech workers and academics have more autistic children
I have worked with children with autism for 36 years. I have a grandson with autism. So I know what real autism looks like. And there has definitely been a sharp increase in the last 10 years or so. Yes, some of it is the larger parameters we use to diagnose autism (many who I think are misdiagnosed), but there has DEFINITELY been an increase in the numbers of children with more severe autism as well. Ask any prek- through grade 5 teacher. Ask any school district that is having to create more self-contained autism programs. It is real. I am not talking about the kid who used to be considered a nerd who gets good grades and who has an obsession with Pokémon who we now call autistic. I am talking about kids who are non or minimally verbal, who need ABA and AAC devices, very specialized instruction,and one:one para support. It’s a topic of conversation we often have in our sped meetings.
Ellie, I want to thank you with everything in me for your voice in this space. You are spot on. As a parent of two non-speaking autistic children, I can confirm that what you’re seeing is exactly what we are living. The increase in complex autism is real and it’s not just due to better diagnosis or broader criteria. We are witnessing a surge in children who require intense, lifelong support …children who are not “quirky” or “gifted but different,” but who are non-speaking, have co-occurring apraxia, and often require 1:1 support just to get through the school day.
You nailed it when you drew the distinction between “Pokémon-obsessed kids with high test scores” and the children who are often completely left out of the public conversation because they are not on TikTok, not making memes, and not writing Medium posts. My children are bright and beautiful, but their communication is through AAC and their struggles are profound. We need more professionals like you who acknowledge the reality and complexity of what families like mine live every day. Thank you for speaking up with clarity, compassion, and conviction. I wish your voice could be amplified across every school district in this country.
I think a few things can be true at the same time. Yes, I agree there is an uptick in profound cases. Yes, I agree that parents want their nerdy kid to be labeled as something other than "nerd". And yes, I believe that something is going on with the DSM/testing issue.
Personally, I believe chemicals in our food/environment play a very big role in a lot of our illnesses. We are what we eat/drink/breathe.
That's interesting. I have been curious about that, and asked a person at our school district last year when they were trying to get a bond issue passed. (I live in a small San Francisco suburb with a four elementary school district.) She said they have not seen an increase in non-verbal cases, just high-functioning cases.
I would respectfully offer that smaller or more affluent districts may not yet be seeing the same intensity or complexity of need that larger urban or mixed-income districts are reporting. That doesn’t negate your experience but it may mean we’re dealing with a patchwork of very different realities depending on location, resources, and even cultural attitudes toward early intervention and diagnosis.
I think that is very suspect and a very good reason why schools should NOT have anything to do with an Autism diagnosis. More IEP's mean more Fed $$$$ through IDEA.... AND more teacher burn out as they have to differentiate curriculum for too many children. We saw this same thing happen with ADD/ADHD....so just medicate those boys into compliance who learn best when they are run like racehorses.
I agree that teacher burnout is real. Very real. However, for many families like mine especially those raising non-speaking autistic children the school is often the only place where meaningful support, structure, and developmental progress can happen. Without school-based assessments and services, many children would fall through the cracks completely. While the system has flaws, removing schools from the diagnosis and support process entirely would be devastating for those who lack access to private specialists or can’t afford lengthy diagnostic evaluations. We need reform, yes but not removal.
We can’t diagnose in schools. But we can do assessments.
And I think that is a HUGE problem. There is absolutely nothing wrong with most of these kids. I do think there are HUGE problems in public schools that the "deform" movement created and have been exacerbated by phones and other technology...and by parents that aren't willing to handle behaviors at home (gentle parenting!).
Thank you so much for your response. I speak from my professional experience but also as a grandmother. No history of autism in my family , but the love of my life- my six year old grandson, is minimally speaking- also with an AAC device and high support needs. so I am not just invested in this as a teacher, but as a family member.
We also get a lot of referrals in my district from developmental pediatricians who determine that these students have autism without doing autism assessments (e.g ADOS or other formal diagnostic tools)and just relying on parent interviews without input from school professionals. Kids we do not see signs of autism in at all in the school setting. Meanwhile, they have a diagnosis on record. Not sure how common this is across the nation, but these are coming from multiple MDs.
It is interesting. Mine is an urban district and I know of at least two others that have been seeing the same. But of course it is not the same as having hard numbers across an entire country. The data of this article is therefore very interesting to me.
I tried to talk about as many theories about autism as possible in this (very long) essay and to examine evidence for them … definitely missed some factors though.
I didn’t highlight this in the essay, but a lot of the proposed environmental toxins and nutritional factors were introduced or became widespread at two key points — the late 70s or early 80s, and the late 90s.
https://thecassandracomplex.substack.com/p/what-causes-autism
The timelines you pointed out late ’70s/early ’80s and late ’90s align closely with spikes many of us have witnessed in severe autism diagnoses, especiallyyyyy among those who are non-speaking and need intensive supports. I’d love to see deeper exploration into those environmental and nutritional shifts, too.
You might appreciate the essay I linked to! I go into a lot of detail on the environmental, nutritional, and pharmaceutical factors. The key point is that autism is not a single condition, but an umbrella term for chronic neuroinflammation that can be caused by any number of factors, with no factor applying to all cases and no case having only one factor. You could take 100 autistic kids and have 100 different causal profiles. But I think the biggest causes of the spike in severe cases are processed foods / nutrient deficiencies, glyphosate, and heavy metals (including vaccines) -- all interacting with each other.
This is a deeply complex biological and inevitably political issue.
If we shifted our perspective to, “We are increasingly aware of the the numbers of people who are autistic” we would be better placed to look at causation”
The typical response is however to seek a simple answer, simple answers that almost certainly don’t exist.
Let’s look at another complex disease as a model for autism, Type 2 Diabetes. It too is has a high heritable causation. Some unlucky individuals have a package of alleles that cause diabetes very early in life, others have a gene set that the impact only shows up later in life.
The difference is, we largely know that the expression of pathological signs and symptoms of diabetes are triggered by external factors like a western diet, stress low exercise.
Latest data shows that inheritance of a large subset of “autism” versions (alleles) of genes predisposes people to autism.
Once again, some gene sets will exhibit early in life whilst others may present later.
We cannot ignore the impact of environmental factors in both conditions but diving head first into “accusing” one factor is entirely unscientific.
Finally, let’s return to increasing incidence and the descriptors of autism (generally behavioural). The more ‘challenging’ autistic behaviours appear to be perfecly natural, amplified, responses to environmental overwhelm.
Could it be that the overall intensity of modern life pushes more children genetically predisposed to autism to exhibit their underlying generic mind type?
Consider a world where just like Type 2 Diabetes it’s our toxic cultural lifestyle that reveals our genetics?
Once the early trauma happens the emotional wounds last.
The incidence is rising because of two things - we’re looking more closely, and we are culturally more toxic.
If this is true, the neurotypical majority always look to lay blame on the minority rather than themselves.
Political simplicity pour fuel on the fire of ingorance.
Good article :-)
One of many q’s is transnational comparison — diagnosis trends in other countries
SES data intrigues. Curious if any research has been done on parental occupations. I’ve never seen anything but anecdotal evidence for common belief that tech workers and academics have more autistic children
No support for that in reality. But associations seen with some parental occupational exposures such as solvents.
Solvents a new one to me. We must be nearing point where list of suspected causes outstrips nonsuspects
All the more reason to declare a national health emergency to study