Might it come -1:2 or even 1:1 ratio ASD women:men?

Page 1 of 1 [ 16 posts ] 

SharonB
Veteran
Veteran

User avatar

Joined: 14 Jul 2019
Gender: Female
Posts: 2,738

03 Jun 2023, 9:43 am

"There is a growing consensus among neuroscientists that the number of autistic women has been vastly underrepresented due to the assumption that it is primarily a male condition.[34]"

ASD runs in my family mores so amongst the women. We are "Twice Exceptional" (2e) and we're underrepresented in today's diagnostic numbers despite our attempts. It makes me so sad how much we suffered alongside numerous misdiagnoses that in some cases made it worse. I am sad that all of us have self-harmed or been ill with the stress, many of us life-threatening and one died. I want biases to move aside or diagnostic criteria to be modified so ASD can be recognized in the more "social" women, men, and non-binary folks to facilitate support. I am fortunate that despite my daughter's lack of ASD diagnosis (not for lack of trying), we've been able to obtain sufficient support for now.

I hear some studies suggest the ratio is now 1:3, down from 1:4. I think it has far to go based on the continued lack of diagnosis and misdiagnosis I observe in the ASD community for women, as well as the more social men and non-binary folks. I don't want women to have ASD, but I want women who do to receive support.

"Compared to men, women are generally required to be more impaired by their autism[21] or have more cognitive or behavioral conditions[22] than their male counterparts to meet autism spectrum criteria. There is evidence of increased incidence of social anxiety,[13] anorexia nervosa[23][24] and self-harm in autistic females..."

RIP my beloved cousin. (undiagnosed)

source which references other sources: https://en.wikipedia.org/wiki/Sex_and_g ... _in_autism



Fairfield
Veteran
Veteran

User avatar

Joined: 25 Jan 2023
Age: 23
Gender: Male
Posts: 1,598

03 Jun 2023, 10:19 am

SharonB wrote:
..."Compared to men, women are generally required to be more impaired by their autism[21] or have more cognitive or behavioral conditions[22] than their male counterparts to meet autism spectrum criteria. There is evidence of increased incidence of social anxiety,[13] anorexia nervosa[23][24] and self-harm in autistic females..."...

This is pretty much my situation as someone AFAB. I had all the same symptoms as my brother, who was able to get a diagnosis as a small child, and even though I had more impairments + have learning disabilities I wasn't given a diagnosis both times (I was assessed twice at different points growing up). I basically still wasn't viewed as impaired "enough" as a female, told it was all "just due to ADHD and me not paying attention enough", and that I had just been possibly "copying my brother" for 16 years at the point of the second assessment.

Ironically, both assessments were because I was having severe impairments in my ability to function academically and socially, and each denial to diagnose me kept me from accommodations and therapies that left me even more impaired in those situations and essentially f****d with my developmental potential.

If you're female and have autism, a lot of professionals literally do not want you to get diagnosed or be able to get the help that will allow you to succeed in life, and it's absolutely f****d up.



Recidivist
Veteran
Veteran

User avatar

Joined: 4 Jan 2023
Gender: Male
Posts: 3,851
Location: He/him/his

03 Jun 2023, 10:45 am

SharonB wrote:
"Compared to men, women are generally required to be more impaired by their autism[21] or have more cognitive or behavioral conditions[22] than their male counterparts to meet autism spectrum criteria. "
source which references other sources: https://en.wikipedia.org/wiki/Sex_and_g ... _in_autism


I can find no evidence in the quoted references where it states this, in fact gender is not even mentioned in the study. ???

Edit: study [21] does not mention gender but my bad, I just read [22] which states

"Girls, but not boys, meeting diagnostic criteria for ASD showed significantly more additional problems (low intellectual level, behavioral difficulties) than peers with similarly high CAST scores who did not meet diagnostic criteria."



Quote:
I want biases to move aside or diagnostic criteria to be modified so ASD can be recognized in the more "social" women, men, and non-binary folks to facilitate support.


I agree, but you don't get any support with a diagnosis in the UK, what's available where you are?.

Fairfield wrote:
Ironically, both assessments were because I was having severe impairments in my ability to function academically and socially, and each denial to diagnose me kept me from accommodations and therapies that left me even more impaired in those situations and essentially f****d with my developmental potential.


What accommodations and therapies are/were available to you if you had a diagnosis? There is f**k all available in the UK AFAIK.


_________________
Another man's freedom fighter, one man's terrorist is - Yoda (probably)


SharonB
Veteran
Veteran

User avatar

Joined: 14 Jul 2019
Gender: Female
Posts: 2,738

03 Jun 2023, 7:13 pm

I don't know what CAST is, but I do know I was under the clinical threshold for ASD for ADOS-2 (as are up to 30% of women according to a few studies), but other factors were compelling so I received my diagnosis.

Folks in my ASD support group obtain executive function support as EF worsens with age. I have an ASD-specialized therapist who is fantastic. I got my diagnosis 3 years ago. Since then I've attended a very useful Anxiety intensive workshop. I qualified for employment resources and although they didn't quite know what to do with a Twice Exceptional client, ultimately it was useful and helped me secure a new job. I have yet to pursue the referral to pediatric OT for ASD, since there isn't any available for adults, but will at some point. I've enjoyed the online and in-person support groups; I get referrals to ASD-friendly medical offices, services, apps etc (and know which ones to avoid). I live between a big city and a progressive smaller city, so there is a lot here. I need lots of support to live "big" like I do (with many daily demands -from an ASD perspective). My BFF is undiagnosed and lives "small" (with very few demands) so doesn't need the support in that way at this time.

I hope more resources become available in your area that would be useful for you.



Fairfield
Veteran
Veteran

User avatar

Joined: 25 Jan 2023
Age: 23
Gender: Male
Posts: 1,598

03 Jun 2023, 10:30 pm

Recidivist wrote:
What accommodations and therapies are/were available to you if you had a diagnosis? There is f**k all available in the UK AFAIK.

I got some accommodations and interventions in school for a few years due to my ADHD and when I was in SPED. Things like working in a smaller group for classes, getting individual help with math/reading, some things to help me with developing my fine motor skills and learning daily tasks that were hard for me to coordinate, speech therapy, etc. I got minimal help in a lot of those things though, because I "just" had ADHD, so they basically got me to a certain point/hit certain goals they made when I was diagnosed and then kicked me out of those classes and stuff, and expected me to just "grow out" of the rest of my issues. If I had a diagnosis I probably would have stayed in SPED for a bit longer and kept some accommodations, like working in a small group or getting help with certain work. I could not learn in a normal class setting or even handle going from class to class through high school, and had to go to school online instead.



IsabellaLinton
Veteran
Veteran

User avatar

Joined: 1 Nov 2017
Gender: Female
Posts: 69,104
Location: Chez Quis

03 Jun 2023, 11:31 pm

I was diagnosed Level 2 in 2018, when I was already on permanent Long Term Disability from my career because of catastrophic PTSD (primary) and stroke (secondary). I'm not certain if my ASD diagnosis would have qualified me for LTD on its own, but I forwarded my diagnosis to the insurance people anyway when they asked for updates.

Here's my blurb about support:

The assessment itself cost me close to $2000. I pay out of pocket $500 / month for private insurance which includes psychologists, but I can only claim $1500 / year for psychology. I had to forgo a year of trauma therapy with my trauma psychologist, so I'd have enough of a balance available to cover (most of) my ASD assessment.

My report had two pages of recommendations which I'd happily screenshot for you but my name is throughout it and I can't be arsed to blank it out repeatedly. I'm not working or in school so it didn't list those types of accommodations. Basically, they recommended OT, Speech, and CBT, as well as a bunch of sensory products and workarounds. They gave me the names of ASD-specific OT and SLP providers. They didn't put a name for a CBT provider since I hate CBT and I already had a trauma therapist. I didn't want another therapist and couldn't afford one on my benefits anyway.

OT: I didn't use the ASD-one whom they recommended because she was too far away. I found one myself. Any OT can provide OT to a paying customer based on their needs whether they're autistic or not. They'll do an intake assessment and go from there. Mine assessed my Sensory Integration Disorder and did over 200 hours of sensory work with me for Interoception and stimming-related stuff. She was great, but she was almost $200 / hour. It was covered on my insurance but lots of people don't have private insurance and could never afford that type of treatment.

SLP: Same as OT -- I didn't choose the one they recommended. I found my own, told her I was autistic, and told her what I wanted help with. It was up to her to figure it out. Again, anyone can hire an SLP if they want to pay for it.

Therapy: I actually ended up finding an ASD-trained Social Worker who I liked, who was covered in a separate fund from my trauma psychologist. I found her through my ADHD assessment in 2020. She was pretty good but again, if I didn't have insurance it would have been cost-prohibitive. I found her myself so it's not like the ASD doctor or the government handed her to me on a silver platter.

Then my trauma psychologist retired so I had my psychology money freed up. I found a psychologist who was supposedly an expert with ASD and ADHD. It ended up being a bunch of CBT nonsense and costing $255 / 45 minutes, so I gave up on her.

Now I have no therapist for trauma, ASD, or ADHD. I've given up trying to find anyone who understands ND.

As for the issue of women being underdiagnosed, I can't really comment. I believe women who say they've had a hard time. In my case it was cut and dry the first time I went for an assessment. She told me straight-out I was L2 autistic at the end of a 12 hour meeting. I've posted my clinical scores on here several times and they're really bad. My daughter was diagnosed HFA from a different place, but hers was also straight-forward with no dispute. That's why it's hard for me to speak about the gender divide from personal experience, but I'm not saying it doesn't happen.

There are (undx) autistic men and women in my family on both sides, going back generations. I tend to think there's been more men than women, but I'm not sure. As for my kids they also have their dad's DNA so I'd have to look at his family. One of his sisters has Downs and there are a few other very autistic-seeming people, including one niece in particular who was hospitalised most of her life in paediatric mental health, for what I can only assume is autism based on the descriptions I've heard from my daughter. To be inpatient for years, she must have comorbids too.


_________________
And in the end, the love you take is equal to the love you make.


SharonB
Veteran
Veteran

User avatar

Joined: 14 Jul 2019
Gender: Female
Posts: 2,738

04 Jun 2023, 11:52 am

^ Good (and hard) stuff there. You are very resourceful!

I forgot about SLP (speech); I'm interested in that for myself.



Recidivist
Veteran
Veteran

User avatar

Joined: 4 Jan 2023
Gender: Male
Posts: 3,851
Location: He/him/his

04 Jun 2023, 12:09 pm

SharonB wrote:
I don't know what CAST is, but I do know I was under the clinical threshold for ASD for ADOS-2 (as are up to 30% of women according to a few studies), but other factors were compelling so I received my diagnosis.

Folks in my ASD support group obtain executive function support as EF worsens with age. I have an ASD-specialized therapist who is fantastic. I got my diagnosis 3 years ago. Since then I've attended a very useful Anxiety intensive workshop. I qualified for employment resources and although they didn't quite know what to do with a Twice Exceptional client, ultimately it was useful and helped me secure a new job. I have yet to pursue the referral to pediatric OT for ASD, since there isn't any available for adults, but will at some point. I've enjoyed the online and in-person support groups; I get referrals to ASD-friendly medical offices, services, apps etc (and know which ones to avoid). I live between a big city and a progressive smaller city, so there is a lot here. I need lots of support to live "big" like I do (with many daily demands -from an ASD perspective). My BFF is undiagnosed and lives "small" (with very few demands) so doesn't need the support in that way at this time.

I hope more resources become available in your area that would be useful for you.


Sounds like you have been luckier than most. There is a specialist Autism centre near me but all I had was a post autism diagnosis group chat (via zoom) years after my diagnosis, heard nothing from them since although I do get emails about upcoming zoom meetings.

Basically after diagnosis as an adult you basically get a pat on the back and told 'off you go now'


_________________
Another man's freedom fighter, one man's terrorist is - Yoda (probably)


Recidivist
Veteran
Veteran

User avatar

Joined: 4 Jan 2023
Gender: Male
Posts: 3,851
Location: He/him/his

04 Jun 2023, 12:16 pm

Fairfield wrote:
Recidivist wrote:
What accommodations and therapies are/were available to you if you had a diagnosis? There is f**k all available in the UK AFAIK.

I got some accommodations and interventions in school for a few years due to my ADHD and when I was in SPED. Things like working in a smaller group for classes, getting individual help with math/reading, some things to help me with developing my fine motor skills and learning daily tasks that were hard for me to coordinate, speech therapy, etc. I got minimal help in a lot of those things though, because I "just" had ADHD, so they basically got me to a certain point/hit certain goals they made when I was diagnosed and then kicked me out of those classes and stuff, and expected me to just "grow out" of the rest of my issues. If I had a diagnosis I probably would have stayed in SPED for a bit longer and kept some accommodations, like working in a small group or getting help with certain work. I could not learn in a normal class setting or even handle going from class to class through high school, and had to go to school online instead.


Yeah, sounds like you were f****d over dude :( for whatever reason but most likely due to the biases that exist. It's so f*****g wrong :evil:

I was in a normal class all through school, and I have no idea how I passed my exams to get to college. I did f**k all work, never did homework, f****d about, didn't revise for my exams etc. I noped out of college after a month and became a massive stoner which basically makes me end most of my sentences with 'dude' or 'man' :jester:


_________________
Another man's freedom fighter, one man's terrorist is - Yoda (probably)


IsabellaLinton
Veteran
Veteran

User avatar

Joined: 1 Nov 2017
Gender: Female
Posts: 69,104
Location: Chez Quis

04 Jun 2023, 1:53 pm

Recidivist wrote:

I was in a normal class all through school, and I have no idea how I passed my exams to get to college. I did f**k all work, never did homework, f****d about, didn't revise for my exams etc. I noped out of college after a month and became a massive stoner which basically makes me end most of my sentences with 'dude' or 'man' :jester:


But you're really good at French, dude man.


_________________
And in the end, the love you take is equal to the love you make.


SharonB
Veteran
Veteran

User avatar

Joined: 14 Jul 2019
Gender: Female
Posts: 2,738

04 Jun 2023, 3:21 pm

Recidivist wrote:
Basically after diagnosis as an adult you basically get a pat on the back and told 'off you go now'

Yes, that. At the time of diagnosis, I asked my evaluator what support or resources there was for adult ASD and his answer was effectively "None". Asides my area, I have also found resources from more progressive states (US) that have been helpful. The silver lining of the pandemic is that many of these became readily available to folks in other areas.



Recidivist
Veteran
Veteran

User avatar

Joined: 4 Jan 2023
Gender: Male
Posts: 3,851
Location: He/him/his

04 Jun 2023, 4:14 pm

IsabellaLinton wrote:
Recidivist wrote:

I was in a normal class all through school, and I have no idea how I passed my exams to get to college. I did f**k all work, never did homework, f****d about, didn't revise for my exams etc. I noped out of college after a month and became a massive stoner which basically makes me end most of my sentences with 'dude' or 'man' :jester:


But you're really good at French, dude man.


Enculer vous tête de poisson rouge


_________________
Another man's freedom fighter, one man's terrorist is - Yoda (probably)


Recidivist
Veteran
Veteran

User avatar

Joined: 4 Jan 2023
Gender: Male
Posts: 3,851
Location: He/him/his

04 Jun 2023, 4:22 pm

SharonB wrote:
Recidivist wrote:
Basically after diagnosis as an adult you basically get a pat on the back and told 'off you go now'

Yes, that. At the time of diagnosis, I asked my evaluator what support or resources there was for adult ASD and his answer was effectively "None". Asides my area, I have also found resources from more progressive states (US) that have been helpful. The silver lining of the pandemic is that many of these became readily available to folks in other areas.


Definitely one of the silver linings. My zoom meeting taught me nothing , it was just a sharing of experiences. I have learnt more here on WP or should I say learnt more from awesome members than anywhere else. I don't think I would have pushed for an OCD diagnosis if it wasn't for StampySquiddyFan , and I wouldn't have pushed for an ADHD diagnosis if it wasn't for Isabella.


_________________
Another man's freedom fighter, one man's terrorist is - Yoda (probably)


IsabellaLinton
Veteran
Veteran

User avatar

Joined: 1 Nov 2017
Gender: Female
Posts: 69,104
Location: Chez Quis

04 Jun 2023, 4:28 pm

Recidivist wrote:
IsabellaLinton wrote:
Recidivist wrote:

I was in a normal class all through school, and I have no idea how I passed my exams to get to college. I did f**k all work, never did homework, f****d about, didn't revise for my exams etc. I noped out of college after a month and became a massive stoner which basically makes me end most of my sentences with 'dude' or 'man' :jester:


But you're really good at French, dude man.


Enculer vous tête de poisson rouge


:lol:

I found your school reports.

"Peut jouer de la guitare comme une putain d'émeute. Des mains exceptionnellement agréables aussi, y compris le majeur. Plus d'efforts sont nécessaires pour décrire des lapins ou tenir des pots de fleurs."


_________________
And in the end, the love you take is equal to the love you make.


IsabellaLinton
Veteran
Veteran

User avatar

Joined: 1 Nov 2017
Gender: Female
Posts: 69,104
Location: Chez Quis

04 Jun 2023, 4:29 pm

Recidivist wrote:
SharonB wrote:
Recidivist wrote:
Basically after diagnosis as an adult you basically get a pat on the back and told 'off you go now'

Yes, that. At the time of diagnosis, I asked my evaluator what support or resources there was for adult ASD and his answer was effectively "None". Asides my area, I have also found resources from more progressive states (US) that have been helpful. The silver lining of the pandemic is that many of these became readily available to folks in other areas.


Definitely one of the silver linings. My zoom meeting taught me nothing , it was just a sharing of experiences. I have learnt more here on WP or should I say learnt more from awesome members than anywhere else. I don't think I would have pushed for an OCD diagnosis if it wasn't for StampySquiddyFan , and I wouldn't have pushed for an ADHD diagnosis if it wasn't for Isabella.


-- and Bear too!


_________________
And in the end, the love you take is equal to the love you make.


Recidivist
Veteran
Veteran

User avatar

Joined: 4 Jan 2023
Gender: Male
Posts: 3,851
Location: He/him/his

04 Jun 2023, 4:42 pm

désastre comparatif

and yes Bear too :heart:


_________________
Another man's freedom fighter, one man's terrorist is - Yoda (probably)