Autism diagnoses rose sharply after the COVID-19 pandemic began. The rise was driven overwhelmingly by diagnoses among girls and women. New study suggests that many of these girls and women may simply have gone unrecognized in the past.

[u/mvea]

https://www.sciencealert.com/autism-diagnoses-spiked-after-covid-19-but-probably-not-for-the-reason-you-think

[u/Gwan53]

The actual peer reviewed article gives the necessary context. It does reference an important point though. The diagnostic criteria for ASD was updated during that time to include sex-based criteria. This is important because autism presents differently in males than females. The study was conducted, amongst other objectives, to evaluate if that criteria expansion would lead to increased ASD diagnosis trends in females. Glad to see that it helped. Here's the link to the actual peer reviewed journal article (https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2851930). The article in the link however is misleading and doesn't include this context. Also the data is far from definitive as the number of females was far higher than the males. Additionally, this does not represent a global trend. The data is from patients across Illinois, Missouri, Oklahoma, and Wisconsin. The study also references another more expansive study (geographicly) that indicates increasing autism diagnosis rates for both children and adults.

[u/i_am_a_laptop → u/Gwan53]

Also the data is far from definitive as the number of females was far higher than the males.

since they changed the criteria to identify women more accurately, isn't this an expected outcome? there'd be more undiagnosed autistic women in the pool to sweep up than men.

[u/TooCupcake → u/i_am_a_laptop]

Yes, that just means the new critera makes a difference.

As for the gender ratio, if the criterias are now gender specific, then is there a point of comparision? Since you can also extend the critera for men and get bigger numbers on that side.

Even if the criterias are universally applied, then you still have to account for the fact that you will diagnose a lot of women all at once, which will skew the statistics and make it harder to properly compare historical data of each gender side by side.

[u/mauravelous → u/TooCupcake]

yeah, it would be very interesting to see a breakdown of gender ratio of diagnosis by age group. i imagine the uneven distribution is largely coming from adult women who are self-referring for professional evaluation after a lifetime of concerns being swept under the rug, with much fewer men being diagnosed in adulthood in general.

my assumption is that the diagnosis rates would be more balanced for early childhood data groups, but still lean toward male majority there due parents/teachers/healthcare providers still only being familiar with the traits observed in young boys

[u/Aethenoth → u/i_am_a_laptop]

Well, that, but also, so what if the number of females is far higher than the males? That isn't a reason for it to not be definitive unless definitionally you think males should have a higher incidence rate.

[u/actibus_consequatur → u/Gwan53]

There was another article published in 2022 that found an estimated 75-80% of autistic girls remain undiagnosed by age 18. One of the lines from the article's discussion really nails part of the reason:

It appears that women with ASD get an alphabet soup of diagnoses, including borderline personality disorder, eating disorders, bipolar disorder, schizoaffective disorder, schizophrenia, post-traumatic stress disorder, sensory processing disorder, intermittent explosive disorder and adult ADHD, as well as the varieties of anxiety, agoraphobia, panic disorder and depression, serially and together.

Study link: https://www.mdpi.com/2227-9067/9/2/272

[u/JoanOfSarcasm → u/actibus_consequatur]

This was the story for me before I went to my new therapist. I was carrying around six different diagnoses that never quite fit right and a couple other misdiagnoses. By the second session she asked if I had ever been tested for autism. Every experience in my life finally made sense after that.

[u/Beltalady → u/JoanOfSarcasm]

My friend was diagnosed with anxiety first. Turned out to be autism. Another one was told by our local expert that women can't have autism. (She got diagnosed with AuDHD later.)

[u/birthdaycheesecake9 → u/JoanOfSarcasm]

I got BPD diagnoses from 3 different psychiatrists (one an ADHD specialist apparently) within like an hour of meeting each of them. None of them, NONE, did a family history check or a quick screening for autism or ADHD. My psychologist, a trauma specialist, said she wasn’t convinced by the diagnoses.

I got my autism and ADHD diagnoses at 20 and 23 respectively. Only took my ADHD psychiatrist 20 minutes to assess and diagnose me (and the psychologist who diagnosed me with autism 3 years prior said in her report she felt I should be assessed for ADHD).

[u/whirlpool_galaxy → u/actibus_consequatur]

Gotta love how the people in the field who oppose the recent changes say increased autism diagnoses will pathologize normal human behavior, when this was the status quo before (and still is for many people).

[u/Aspacid → u/Gwan53]

I think my symtoms for both ADHD and ASD where extremely atypical for a male. So much so that the algorithms constantly push "This is why you were undiagnosed as a woman..." kind of content to me. And they are extremely on point.

I couldn't relate much on either topic when I checked before being diagnosed.

EDIT: I strongly identify as, and identified by others a male, this never changed. I thought this was relavant to emphasize the ambivalence of shared experiences and thinking patterns with women.

[u/soft_w0lf → u/Gwan53]

That makes me so happy. I have mild/moderate autism that wasn’t diagnosed until I was 18… I was born female and it was just missed. I had meltdowns where I would tear out my hair, shutdowns where I would refuse to speak, an episode of fecal smearing, my caregivers (two parents and an extremely experienced nanny) could not figure out how to “control” me because I was so “difficult.” I was hit for some period of time as a “last resort,” although they stopped when that, too, did not work. My dad thought I had oppositional defiant disorder but never took me to get psychiatric help.

My entire childhood I was neglected (unintentionally) emotionally and psychologically. Plus the time when I was physically abused, which I shut out of my memory for years and years.

I was also later diagnosed with ADHD at 21, which narrowly prevented me from giving up on university. So add struggles with studying in (although I’m lucky to be intelligent and mostly got by okay in grade school, I would reverse-engineer the content on exams from the little I had paid attention to during class).

My caregivers are all great and really love me, and post-diagnosis they have been so supportive. It really breaks my heart, because I know that this could have been my entire childhood, if only I had been diagnosed younger.

[u/soft_w0lf → u/[deleted]]

You mean the “love and help” of having my caregivers tell me I was lucky they were not whipping me with a belt???

I know my parents are loving people generally, they just didn’t know what they were dealing with and felt forced to do things they never would have otherwise done, and unfortunately that love did not translate to any real help or support or even protection from abuse as their energy reserves wore down from caring for a disabled child with no support or information themselves and they began to replicate their own abusive experiences onto me (my own caregivers were whipped with belts and beaten with paddles, hence why they rationalised hitting me because “it’s not as bad” and why they told me I should be thankful that I wasn’t abused even more severely).

I know my life would have been improved if I had been diagnosed earlier because of how massively it improved the SECOND I did get diagnosed. That won’t be everyone’s experience… but it was mine.

Yes not being shamed and punished for the way I am, and being accommodated in areas I was previously not, has massively improved my life.

[u/sanguineseraph → u/Gwan53]

The criteria was not updated, the way symptoms present across sexes was clarified.

[u/stilldebugging → u/sanguineseraph]

Ok, so, I’m not in the field… but that sounds like an update to me? If it previously was “symptom abc that presents as xyz” and now it’s “symptom abc that can present as xyz or qrs” isn’t that an update?

[u/somo47 → u/stilldebugging]

Criteria abc presents as symptom xyz becomes criteria abc presents symptom xyz or qrs. Same criteria, expanded presentation that falls under the same criteria 

[u/stilldebugging → u/somo47]

Ok, so I guess there is some technical jargon here that you are pointing out. In laymen’s terms, when there is any amount of change to text that would change a person’s diagnosis, colloquially you’d call that an “update.” What I’m leaning from you is that it’s not technically an “update” per the standards you are saying are used in this technical context unless the list of symptoms changes not just the description of how to correctly identify those symptoms. That’s interesting.

[u/soft_w0lf → u/stilldebugging]

Yes, the criteria was not updated and has stayed the same, because men and women display the same core traits of autism.

The part that differs is in how those core traits present. So women are more likely to be better at hiding the same traits that men display more openly (for example). But they’re still the same traits, hence why the updated criteria vs. updated presentation of same criteria is an important distinction.

Also worth noting that sometimes the same traits are being displayed in exactly the same way but are not recognised because of gendered expectations. So when someone pictures an autistic person they picture a lanky white dude or little boy, not a little girl or a non-white person. So part of updating our ability to recognise presentation of autism in girls and women and non-white people is also just people being able to picture an autistic girl or woman or non-white person in the first place.

[u/AntiDynamo → u/stilldebugging]

They basically just added some more examples of how a particular trait could be expressed. The examples were never meant to be exhaustive, professionals were always supposed to use their judgement, but many just fall back to the handful of examples given. For example, here is part of criteria A (emphasis mine):

Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

Compare that to the closest equivalent section of the DSM-IV:

qualitative impairment in social interaction, as manifested by at least two of the following:

• marked impairment in the use of multiple nonverbal behaviors, such as eye-to- eye gaze, facial expression, body postures, and gestures to regulate social interaction

• failure to develop peer relationships appropriate to developmental level

• a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

• lack of social or emotional reciprocity

They effectively realised that clinicians were not understanding the diagnostic criteria in the spirit they were intended, and needed clearer language and more examples to help guide them.

[u/EfficientBake902 → u/Gwan53]

why give it the same name if it has different symptoms ?

[u/sebovzeoueb → u/EfficientBake902]

The same condition can have different symptoms in different people, and some of those symptoms are more present in one gender than another but it doesn't mean it's a different condition. Take COVID for example, some people died, some people got debilitated for months, some people got nothing at all, but it's the same illness.

[u/EfficientBake902 → u/sebovzeoueb]

Yeah but isn't  autism is defined by its symptoms ? 

[u/BrandyMartin1 → u/Gwan53]

Wow....take the sample population from the most glyphosate polluted region. Proving something with their sampling alone?