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The Autism Spectrum Diagnosis Might Not Last
The Autism Spectrum Diagnosis Might Not Last
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0:00
If you’re on the autism spectrum, like me
0:02
chances are your formal diagnosis has changed over the years.
0:05
The shift from distinguishing things like Aspergers
0:08
to grouping everyone under the same Autism Spectrum Disorder umbrella
0:12
happened fairly recently.
0:13
Maybe you adopted “Autism Spectrum Disorder” with open arms.
0:16
Or maybe you continue to use the terms you’ve been using from the beginning.
0:20
Different people have different preferences,
0:21
and there’s no one right way to talk about it.
0:24
Even among the people coming up with these terms!
0:26
In the last few years,
0:27
some researchers have started pedaling back from the decision
0:30
to smush all of autism into one big group.
0:33
They suggest that we should once more refer to subcategories of autism.
0:37
But not the old ones.
0:39
This time, they’re proposing four groups based on not just behavior,
0:43
but on genes and age of diagnosis.
0:46
And it might help people find the right kind of support.
0:49
Here’s a new way to think about autism.
0:51
[intro music]
0:55
The way one person describes their autism diagnosis and themselves
0:58
will be different from how someone else with the same experience describes it.
1:02
In this video, we'll use the terms "Autism Spectrum Disorder"
1:05
and identity first language like "Autistic People,"
1:08
but please know we respect whatever terms you choose to use to describe yourself.
1:12
And some people refer to autistic symptoms as "traits,"
1:15
because "symptoms" might imply
1:16
there's always something wrong that needs to be fixed.
1:19
In fact, many autistic people feel they don't need to be "fixed,"
1:22
and neurodiversity is fine actually.
1:25
But we're using the word "symptoms"
1:26
because these are things that can be challenging for autistic people,
1:30
and having appropriate support can help them live happier lives.
1:33
The papers we're talking about today refer to them as "symptoms."
1:36
So with that established, let’s talk about this new research.
1:39
In my lifetime, we’ve seen professionals differentiate autistic people
1:43
based on the extent of their social communication and repetitive behaviors.
1:47
We’ve also seen a broader acceptance of these conditions
1:49
under one umbrella of Autism Spectrum Disorder.
1:52
But not long after Autism Spectrum Disorder
1:54
was written into the Diagnostic and Statistical Manual of Mental Disorders,
1:59
some researchers began saying we should split it back up into subgroups.
2:03
Now, they’re not suggesting that we go back to the way
2:05
it was before we unified under one roof. Instead,
2:07
they’re proposing new flavors of autism based on what scientists believe today.
2:12
After combing through diagnostic tests
2:14
and behavioral reports from more than 5,000 people diagnosed with autism,
2:18
a group of researchers in 2025 identified these categories:
2:22
The largest portion of their sample fell into a group
2:24
they called SocialBehavioral.
2:27
A little more than a third of the individuals had this flavor of autism.
2:31
This group was united by their challenges
2:32
with communication, attention, and anxiety,
2:35
but not significant developmental delays.
2:37
In addition to their autism,
2:38
they often had ADHD, anxiety, or major depression.
2:42
Those bonus diagnoses are called comorbidities.
2:45
And they were common among people in the SocialBehavioral group,
2:48
but not so much in the next group,
2:50
who were said to experience Moderate challenges.
2:53
This was the second largest group,
2:55
encompassing about one third of the sample population.
2:58
People in the Moderate autism group
3:00
also didn’t have developmental delays.
3:02
And compared to the SocialBehavioral group,
3:04
they had far fewer difficulties with the social and behavioral stuff.
3:08
Which you might have guessed from the name.
3:10
To be clear, compared to someone who hasn’t been diagnosed with autism,
3:13
people in the Moderate group still had more symptoms.
3:16
But they weren’t experiencing it all to the extremes
3:20
found in other autism sub-categories.
3:22
Like the next category:
3:23
Mixed autism spectrum disorder with developmental delays.
3:26
Yeah, they could have workshopped this title a bit more,
3:28
but what it lacks in brevity it makes up for in clarity.
3:31
The almost 20% of the sample population that made up this group
3:35
had a mixture of what the other groups had, with added developmental delays.
3:40
This group often had intellectual disabilities, language delays,
3:43
and movement disorders.
3:44
But did not usually have the other comorbid diagnoses,
3:48
like ADHD or anxiety,
3:50
that can come along for the ride in the SocialBehavioral group.
3:52
Which brings us to the least common of the four categories,
3:55
with 10% of the sample population. They were categorized as Broadly affected.
4:00
People in the Broadly affected group experienced it all.
4:03
And this time, when I say they experienced it all,
4:05
I mean including the comorbidities.
4:08
So we have the whole spectrum broken down into
4:10
SocialBehavioral, Moderate, Mixed, and Broadly affected.
4:13
Like every new concept,
4:14
these categories started out as an idea based on a limited set of data.
4:18
But as the researchers sought to test their categories,
4:21
they found validation everywhere they looked.
4:23
Parent reports and clinicians supported these classifications.
4:26
And a totally different sample population of autistic people
4:29
also fell into the same categories.
4:32
So it doesn’t just describe these individuals.
4:34
The evidence for these categories isn't just behavioral, either.
4:37
The researchers found genetic differences
4:40
among the four groups that support the establishment of the new categories.
4:44
But before we get into that, all science needs funding.
4:46
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Members of each of the four groups had genetic profiles that resembled each other
5:35
and were unlike that of people in the other groups.
5:39
So if you only looked at everyone’s genes,
5:41
you’d have a good chance of putting them in the same categories
5:44
as if you were basing it on their diagnostic tests.
5:46
For example, people in the SocialBehavioral group generally had genetic variants
5:51
that other researchers have already linked to ADHD and depression.
5:55
And since people in that category also tend to rack up those additional diagnoses,
5:59
the researchers see that as support for grouping a portion of autistic people
6:04
into the SocialBehavioral category.
6:05
Those in the Moderate group had some variation
6:08
in what researchers refer to as less essential genes.
6:11
Remember, these are people who tend to demonstrate mild symptoms.
6:15
There’s still something going on there,
6:16
but these genetic variations aren’t associated with super severe symptoms.
6:20
People in the Mixed group had genetic variation
6:23
that’s much less common if you looked for it in any other population. …
6:27
Which also lines up with this being one of the less common categories.
6:31
And in these cases, we’re not talking one or two letters of DNA swapped.
6:35
They had multiple genetic variations going on at once.
6:38
And people in the Broadly affected group
6:40
had the most of what are called high-impact non-inherited variants,
6:45
though they had a lot of inherited variants, too.
6:47
This includes stuff like the genes and proteins involved in fragile X,
6:51
which is known for developmental delays, intellectual disabilities,
6:54
and feelings like hyperactivity and aggression.
6:56
That’s pretty much exactly how the Broadly affected group was described.
7:00
So the researchers point to the genetic evidence
7:02
as further support for these four categories.
7:05
It might also help explain why people
7:06
who fell into different categories were generally diagnosed at different ages.
7:11
Now, the age that you’re diagnosed depends on a lot of factors.
7:14
Too often, people are living with symptoms for years
7:16
before getting a diagnosis due to social, cultural, financial, or other reasons.
7:21
But symptoms can appear at different ages for different people.
7:24
And sometimes, there’s a genetic connection
7:26
with when your symptoms become more noticeable.
7:29
Maybe you’ve heard the relatively new term AuDHD.
7:32
It describes anyone with both autism and attention-deficithyperactivity disorder,
7:36
and a lot of those folks are diagnosed as adults.
7:39
including me
7:40
There’s a significant genetic correlation
7:42
between later-diagnosed autism and comorbidities like that. …
7:46
Even if it doesn’t fully explain what’s going on.
7:48
On the other side of the age range,
7:50
people in the Broadly affected and Mixed categories
7:53
are likely to be diagnosed earlier in life,
7:55
likely because of the developmental delays characteristic of those categories.
7:59
If you’re not making eye contact, have low muscle tone,
8:02
or other physical displays of autism that a parent might recognize in a toddler,
8:06
they can bring it up with a pediatrician when you’re young.
8:08
And again, people in those Mixed and Broadly affected categories
8:12
often have genetic variations that coincide with early diagnosis.
8:16
A person’s genes, the way they navigate the world,
8:18
and the age at which autism
8:20
became apparent all provide some support for this “four categories of autism” idea.
8:24
And with these new categories,
8:26
people might even have an easier time accessing therapies
8:29
that work best for them.
8:30
We know from a survey answered by 200 autistic adults
8:33
without intellectual disabilities that finding the right support is crucial.
8:37
Some of them shared what it was like to work with mental health professionals
8:40
who didn’t get what their flavor of autism was all about.
8:43
Often the results were life-threatening.
8:45
I’m about to talk about suicide.
8:47
So please skip to the time code on screen
8:49
if that discussion would be unhealthy for you.
8:51
These specific individuals with autism were surveyed
8:54
because they’re in a population that we know
8:56
is at risk for contemplating and dying by suicide.
8:59
So it’s not representative of everyone holding an autism diagnosis.
9:03
But it’s a valuable sample for conversations around suicide.
9:06
Despite their risk,
9:07
more than half of the people surveyed
9:09
reported unmet mental health or social support needs.
9:12
And those who did get help said it literally saved their lives.
9:16
But getting the right kind of support turns out to be
9:19
as important as getting it at all.
9:20
Survey participants reported
9:22
that getting therapy that turned out to be inappropriate for them
9:25
was disempowering and made them feel worse.
9:28
If you’re in the SocialBehavioral group,
9:30
but you work with someone whose area of expertise
9:32
is more aligned with the Broadly affected group,
9:35
it could lead to feelings of hopelessness and incapacity.
9:38
Nobody wants that.
9:39
And having these new categories as shared language or reference points
9:43
could help people avoid those mismatches.
9:45
Now, I said “could” because it’s definitely not an inevitability.
9:49
Introducing new labels always comes with risks.
9:51
If your new classification feels less aligned with
9:54
who you are than how you previously described yourself,
9:57
it could just reopen the same can of worms we’ve been trying to close.
10:01
Time will tell if this one does more good than bad,
10:03
or if it even catches on.
10:04
There are other researchers who have recently divided the autism spectrum
10:08
into completely different groups.
10:10
And no one knows which classification system
10:12
will stand the test of time.
10:13
Plus, remember how I said those researchers
10:15
found validation everywhere they looked?
10:17
Well, they didn't look everywhere.
10:20
Like, you know, asking autistic folks if those new labels seemed appropriate.
10:24
Ideally a new classification system
10:26
would have the stamp of approval from folks it will directly impact.
10:30
As the statistician George Box once said,
10:32
“all models are wrong, but some are useful.”
10:35
[ outro ]
