Oh absolutely, and I’m sorry if you thought I was trying to invalidate your experiences at all, that was not my intention. That combination of ‘only boys have it’ and the (again gendered behavior expectations) for afab folx is killer.

True facts. Unlike things like Fragile X Syndrome that have clear sex-based biological mechanisms behind prevalence rate differences (see below for example), I think the gender discrepancies don’t actually exist for most Disabilities. Raise all kiddos without racialized and gendered societal expectations, and prevalence rates will mostly come out in the wash (this is a broad sweeping statement that completely lacks nuance, but work with me).

(Example: people with 1 X chromosome present Fragile X Syndrome more frequently because there is only 1 X chromosome to carry the genetic load of the X chromosome, typically people with 2+ X Chromosomes present less (unless multiple copies carry it) because the non-affected X chromosomes can pick up the slack).

Is autism diagnosis really that formalized?

Yes, particularly when diagnosed in childhood (especially before middle school). I have a giant ass comment talking about the historical context of changing rates. In theory (like, in this political context who the fuck knows) in order to get formal support as a student or accommodations as an employee, you need a diagnosis. Letters from health providers are part of the process, though some providers are more lax.

As a hack, @andros_rex@lemmy.world a LOT of the accommodations for ADHD mirror those that are used for those with low support needs and are Autistic, and the comorbidity is really really high (so it might be both). Formal, validated, ADHD screenings can be done online for less than $500 if you have a doctor that will work with you. It might be worthwhile thinking about what kinds of work accommodations you would like, and reviewing ADHD DSM requirements, to see if you might be able to wiggle through that way.

Oh this is a thing I can add to (PhD in Ed here, specialize in ed measurement specifically as it relates to Disabled students across spectrum of disability types). Definitely have ADHD, potentially low support needs AuDHD. Fully adding on to @UnderpantsWeevil@lemmy.world

This is not exhaustive, it’s not even the most nuanced, it uses a fair amount of terminology from a medical model which isn’t my favorite, but I’m tired and I wrote a lot. This is written from a academic perspective, uses mostly identity-centered terminology, and includes ASD under the Disability umbrella, as that is where it lives from a policy standpoint. For many of us in Education Research, Disability as a term serves as a reminder that the ‘one size fits all’ approach the basics of education policy doesn’t fit particular groups of people in fairly systematic, predictable ways, depending on what their unique needs are.

-Autism is now understood to be more than just the externalizing behaviors that highlight stereotypes of Autism. While stimming is still a very real indicator, stimming is no longer just hand flapping, head banging, and other large movements- finger/toe tapping, vocal stimms(even quiet ones), fist making, are now broadly acknowledged (among innumerable others), as are internalizing stimms associated with speedy thoughts, maladaptive self-talk, internalized singing, etc. Furthermore, as we now understand just how broad of a spectrum ASD is, we also acknowledge that a huge part of the Autistic population (esp. what are called ‘low support needs’ women, but also broadly across Autistic folx with low support needs/high masking) have primarily internalizing symptomatology both in their stimms, but also their specific interests. Teachers and parents don’t really bat an eye at a young girl who is really into drawing horses, or really loves to write about horses (I swear I’m not picking on horse girls), and loves to read books about horses. Drawing, writing, and reading are acceptable behaviors for girls according to how girls and women are socialized, so it’s largely ignored. Externalizing behaviors and vocal declarations of wants are more encouraged among young boys, until they are deemed problematic for whatever reason.

-When you remember that all of the ‘gold standard’ ASD screeners were based (almost) entirely on white, male, kiddos, it makes sense that the kiddos whose differences that would be most flagged would be those that align most closely with that demographic. Once upon a time, the ratio of girls to boy with ASD 1:5, it’s now 1:3.8. I anticipate this gap closing further as we understand more and develop better items for screening for internalizing aspects of ASD. Furthermore, different cultural groups have different expectations of behavior (particularly within gendered socialization), and that feeds into differing rates of ASD diagnosis across cultural groups (and the horrifying differences between white and Black kiddos being diagnosed with ASD instead of Conduct Disorder, but that is a much much larger conversation).

-Starting in the (I want to say late) 90s, Autism screeners became standard practice in early (toddler) pediatric medical appointments. If you (anyone reading) has kiddos, those questions the doctor casually asks you about your child/toddler’s behavior are largely part of different developmental screening batteries. These taper off around 4-5, as typically by that time we have identified a large portion of the higher support needs (level 2 and 3) kiddos. HOWEVER, this is also the time where kiddos are really developing their internal voices, which we’re not really addressing in those caregiver interviews. This means we miss those masking kiddos. As our understanding of ASD expanded into less of a intellectual disability with externalizing behavioral indicators and more into social communication and executive functioning (<- that being a big one) with more internalizing behavior indicators, the number of people diagnosed as Autistic also exploded.

-Finally, IDEA (now IDEIA) and Rehab Act (Section 504) tied a lot of the funding for supplemental services from the Feds to a diagnosis. The EHA was reauthorized as IDEA in 1990 and that’s when ASD was explicitly added to the list of included Disabilities. 1997 the re-authorization added some supports and need for tracking, and the re-authorization and renaming to IDEIA clarified the importance of IEPs and qualifications for federal funding of services. Funding for services for students qualifying under IDEIA or as English Language Learners are actually the 2 largest (direct student) functions of the trying-to-defunct Dept. of Education. All this to say, in order to receive the appropriate supports for a “fair and appropriate public education” (FAPE, a cornerstone of the Dept. of Ed), diagnosis was rather key. And you see this when you look at the changes in prevalence over time.

The combination of expansion of the definition of ASD/better understanding the spectrum (ASD becoming more than non-verbal folx with high support needs), coupled with integrated screenings at the doctors office, and then later better identification of internalizing features of ASD (in 2 stages) accounts for a huge proportion of the increases. According to the CDC (these are all for 8 year olds), the incidence was 1:150 in 2000 (for kiddos born in 1992), stayed above 1:100 until 2008 (this is that integrated screenings in peds appointments), and then increased in prevalence again in 2010 (kiddos born in 2002) likely partially attributable to the increase in social communication items on screeners, and then again in more recent years to 1:36 (2020, kiddos born in 2012) (imo ‘omg, girls can be Autistic too’). And all of this is coupled withe some of the legislative changes mentioned earlier.

And not to ignore the original parent comment: the earliest foundations of formal education systems within the US were definitely to create an ‘appropriately educated’ population during and after the industrial revolution, and that foundation is still very present in formal education. Frankly, ‘back in the day’ those that would be classified as level 2/3 would more often dropped at institutions, generally abandoned, for the state to take custody of, and generally abused and abandoned, there was no real thought to how to integrate them into the industrial revolution at any level. Frankly when the factory education model was developed, Disabled people of any variety were not considered in the slightest.

PSA: Also note that vaccination counts (as in the number of vaccinations kiddos receive) have stayed fairly stable since like the 1970s. There was a decent jump in 2005, but also some that were dropped off. Not that you could realistically tease out anything close to a causal model looking average vaccinations rates (or counts) with panel data (too many history effects). There are too many other things that support a much more realistic explanation. So with all my heart I remind you all that vaccines don’t cause Autism (I know that was never a question here, but a reminder nonetheless). ETA: Not vaccinating your kiddo because you think vaccines cause Autism implies that you’d rather your child be dead than Autistic, that means you suck.

Tl;Dr: It’s complicated, race matters, gender spectrum matters, socialization matters, research is slow, follow the money and there is your explanation.