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SharonB
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30 Aug 2021, 10:08 am

This is my soapbox. I've posted a few times on it already. Sorry, but I'm really struggling.

TLDR: ASD-like daughter was not diagnosed as ASD for her initial evaluation (age 9). I desperately want current diagnostic criteria to be revised to be inclusive of more women and girls. It's a double whammy for me to be ASD myself and trying to navigate care for my ASD-like daughter: the minority of the minority.

I need to go to a different clinician and have my daughter re-evaluated, but that feels like cheating and it's so much work (and money) and what if we have the same result: highly intelligent, well instructed and masking in a clinical setting really well = non-ASD. I did the work for the first evaluation in a "lull", but now life's busy again and I don't have the spoons for it relative to the risk of "rejection". My daughter is doing well in a structured elementary school environment (with tons of support from me every day), but so did my ASD-like mother and I until it completely fell apart later.

And I really want support as a parent, but I don't have an ASD diagnosis for my daughter. I do have "Expressive Language Disorder" (and five others) so maybe speech therapy would be a next step, but insurance wouldn't cover it. And the parenting support groups don't have another ASD mother with an ASD daughter. I would guarantee you there are more ASD mother with ASD daughters out there, but like my grandmother, my mother and my daughter they didn't get diagnosed. So it's a vicious circle: the diagnostic criteria favors boys, boys are identified as ASD which further informs the diagnostic criteria.

The evaluator asked why I thought my daughter had ASD and I gave her my (jumbled) plethora of evidence. (Currently my now 10yo is watching to see she which or her 14 grasshoppers mate so she can release them into her "program" in our front year and feeding smaller grasshoppers to her praying mantis, while her schoolmates are "tween"ing already.) My evidence didn't "match" ASD in the clinician's papers and mind. So frustrating. Yet my NT mother-friends' sons are diagnosed ASD and are getting help (financial also). Ironically the ASD program at my daughter's school is all boys --- the one girl who attended briefly was sent elsewhere as they weren't "equipped" to deal with her.

While women and girls who "pass" well aren't being diagnosed, it's really hard to advocate ---- "you all say we're not Autistic, but we are, so listen to us..." Ummmm, doesn't fly very well. At least I have my diagnosis. There is the "this is what a scientist looks like" initiative, perhaps there should be a "this is what an Autistic person looks like" except some of us can't get diagnosed.

Newest thing makes me proud and sad: Per her own initiative, my daughter found and has started watching videos about social situations. Videos about bullying, parentage, marriage, all kinds of marginalized people and difficult situations, Everything. She's watching 1-2 every day or so. I was so worried how she would transition to middle school, but in part she's solving that herself with this "study". So while she still wants to play tag but her friends now want to talk about their training bras and boys, she's taking time to "study" life's subjects. Like me she will know so much, but the difficulty is always putting it into practice. And of course, this will make it that much more difficult to get a diagnose, b/c like me she'll look really good on paper and in a clinical setting. But that doesn't translate to what it's like to collapse on the floor of a store in meltdown, or get arrested due to "incorrect" behavior, or suffer silently behind the mask. Thankfully I'm in a position to drop my mask some, but she's just at the onset of her life...



The_Znof
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30 Aug 2021, 2:24 pm

Im a male but right into my feminine side.

Not sure if this has anything to do with me not getting an ASD diagnosis, but may be worth a look.



SharonB
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30 Aug 2021, 4:02 pm

I would absolutely agree there's something to that. "Feminine" in the minimum or more widely "non-stereotype", something as simple as extraverted or as insidious as socio-economic differences. I'm not wide-thinking like that when my personal alarm is blaring and I've been discouraged in the past from using larger concepts. Thank you for adding that.

Will you go for another evaluation if/when you can?

I'm in a local support group and two folks were self-diagnosed but their initial diagnosis were Negative for ASD. Both identified as women --- one had placed such severe limits on her life that she appeared to be entirely self sufficient and "at ease" (similar to my daughter at this point in her life), the other was highly extraverted and had a high EQ (similar to me). Time will tell...

Ironically I used to speak about the problem of those "not similar to the standard", but folks didn't get that, and my concerns were repeatedly dismissed, so I was instructed to specifically talk about gender (binary). I know it's limiting, but.... oh, so frustrating. If only my conceptual mind connected to my verbal center and to society at large better.

Thanks for your response.



The_Znof
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30 Aug 2021, 5:08 pm

SharonB wrote:


Will you go for another evaluation if/when you can?


Thanks for your response.


you are welcome. I am not actively seeking a shrink who knows a lot about autism, but would probably take a diagnosis if It was available.

Recently I have become much more convinced I am actually autistic through reading Uta Frith.

I can see how she thingifies her autistic subjects for her own ends [my guess is her motivation is scholarly cred]

I can really empathy with the ones [autistic people] in her book, and want to ask questions to the ones she used in her 'study'

Quote:
The study doesn’t explain whether high-functioning adults with autism truly understand false beliefs over time, or whether they merely learn to solve the tasks, Bernier notes. But it does suggest that in the case of the moral scenarios, their ability to reason is not just delayed, but absent entirely. “If these are delays, they are persistent delays that last well into adulthood for people with typical cognitive ability,” he says.

Frith says she is delighted that these researchers have come up with a strategy that validates the theory she helped develop 25 years ago. “It does make sense of the social behavior,” she says, “and it can be linked up to certain abnormal activations in the brain.”

Impaired moral judgment is associated with distinct neural systems, including the right temporal parietal junction4. Gabrieli says his group is working on an imaging study focusing on which brain regions are active in these individuals while they are engaged in moral reasoning.

They’d better work quickly: Frith predicts that the utility of the new test may be limited. “I have no doubt that the Asperger’s community will get hold of the test, study it, and learn the scenarios,” she says.


https://www.spectrumnews.org/news/mind- ... in-autism/

Frith hee shows conflict of interest, to her it is great that she has evidence that we are not human, and her own suspicion of the subjects gets strange fast when you actually think about it.



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31 Aug 2021, 11:20 am

This has been a problem in the aspie support group in my area, too. There aren't many women, especially not regulars, and when some problem that has way more to do with women than men comes up, it's either brushed aside quickly or belittled. Thankfully, we have a women's group starting next month, and while it doesn't literally ban men from participating, there's a strict point on how it's about being a woman on the spectrum and the experiences about that. The rules aren't quite set in stone yet, but currently there seems to be an approval of letting trans men who want to talk about their time as women on the spectrum to take part, as well as trans women.



The_Znof
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31 Aug 2021, 12:23 pm

It may be worth looking into Asperger's views on Male intelligence here.

Disclaimer: I have not read it yet, and dont 100% trust spectrum news to do it justice.*

https://www.spectrumnews.org/news/extre ... explained/


I think laterally a la Iain McGilchrist, and this view puts the left side as DORK. and even COAT TAIL RIDER

https://en.wikipedia.org/wiki/The_Maste ... s_Emissary

However, this is not disparaging for me - the only reason my left side is so active is that the right finds all kinds of stuff to get it going.

Perhaps this has something to do with hamburgers, idk.. :jester:

Image

Hey, at first I thought it was wrong it was leaning to the left, but then I remembered right brain may = left handed,

which im not, lol :mrgreen:

*: I see now the article went to The Comedian posing as a doctor rather than Hans Asperger, so the shenanigans have become more complex.



HeroOfHyrule
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31 Aug 2021, 12:45 pm

Your daughters experience sounds relatively similar to mine as a child. I got assessed at 6 after my brother was diagnosed and I essentially flunked kindergarten, and was passed off as just having "ADD". It was severe enough "ADD" though that I required a year of special ed., some speech and occupational therapy, extra assistance with math and reading (structured, small group classes), etc.

I actually thrived in special ed. and with the help I was getting, but once I was "ready" to be mainstreamed and was eventually deemed to not need those structured classes anymore, my grades plummeted and I lost interest in school completely. I think if I was diagnosed that wouldn't have happened, and that I would have maybe even stayed in special ed. longer (which would have been a good thing).

I also found out around 10 that I could Google anything I wanted about human behaviour and socialization, and essentially "study" how other people behaved and improve my ability to understand and interact with them. It was very helpful and I still do it, though it did make me feel odd about the fact I had to basically research other people to finally "get" them.

Unfortunately at 20, and after another assessment at 16 (where despite unknowingly masking it was deemed I did "qualify" to be diagnosed, but must have ADHD and have just been copying my brother the entire time), I don't have a diagnosis and am currently looking for someone to assess me as an adult. I really hope that when you find someone else to assess your daughter that they listen to you and give her the diagnosis, and thus the future help, that she deserves.


_________________
I use he/him pronouns.

I like playing video games, watching cartoons and anime, reading, and cooking.

I also enjoy learning + cataloguing information about different types of animals and plants.

Empathy Quotient: 34/80
Systemizing Quotient: 104/150
Friendship Quotient: 56/140
Autism Quotient: 36/80

RAADS-R: 169

CAT-Q: 153
Compensation: 57
Masking: 47
Assimilation: 49

Your broader autism cluster (Aspie) score: 144 of 200.
Your neurotypical (non-autistic) score: 63 of 200.
You are very likely on the broader autism cluster (Aspie).


SharonB
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31 Aug 2021, 6:19 pm

The_Znof wrote:
Frith hee shows conflict of interest, to her it is great that she has evidence that we are not human, and her own suspicion of the subjects gets strange fast when you actually think about it.

Sometimes I wonder that many Autistic folks are more human, or more humane. I do note that I can be very caring and connected, but then disconnected and even ruthless if needed or appropriate.

Fireblossom wrote:
This has been a problem in the aspie support group...when some problem that has way more to do with women than men comes up, it's either brushed aside quickly or belittled.

OT I've noticed gender still trumps neurodiversity. I attended on online women's group somebody on this board recommended for me and it was fabulous. For some reason our local group is over 50% women - we must have a quorum to create balanced (sustainable) participation. I hope your new group goes well!

HeroOfHyrule wrote:
I also found out around 10 that I could Google anything I wanted about human behaviour and socialization, and essentially "study" how other people behaved and improve my ability to understand and interact with them. It was very helpful and I still do it...

Thank you for sharing. It touches me to know another young women has a similar hardship and found similar tools for herself. Wishing you the best in finding your way... hoping you find resources that lift you up -as you lift yourself up. My therapist says it's a blessing and a curse that I've been able to do so. I'm working on appreciating the blessing part and mitigating the curse part.



Itendswithmexx
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17 Oct 2021, 6:39 am

Why do you need support ? Does she have friends? Not get involved in conflicts? Is she learning? Asking for help? Does she talk? Can’t you go speak to a gp? Just cause you have it doesn’t mean she does? My dad has brown eyes and I have blue.. you have it and are fine so ... is she failing school and spending a lot of time in the principals office?



Itendswithmexx
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17 Oct 2021, 6:43 am

Go to an educational psychologist and they can double test her for everything. If you’re not satisfied get another opinion but make sure the opinion is formed after thorougher and intensive extensive ? screening.



SharonB
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17 Oct 2021, 9:59 am

Itendswithmexx wrote:
Why do you need support ? Does she have friends? Not get involved in conflicts? Is she learning? Asking for help? Does she talk? Can’t you go speak to a gp? Just cause you have it doesn’t mean she does? My dad has brown eyes and I have blue.. you have it and are fine so ... is she failing school and spending a lot of time in the principals office?

To be honest, I'm afraid based on my family's past experience. She matches the ASD pattern in our family and I know the awfulness it was, especially in our 20s/30s for my ASD grandmother, and my ASD mother and myself - and female relatives with traits. We didn't have familial awareness and support; thankfully my daughter will have that - so hopefully that particular pattern will be broken. But "hopefully" is scary to me. I am paying attention to those things you mentioned (and more) and we are working on them when appropriate. Like me at her age, she is friendly with everyone but has no close friends; she keeps to herself and does not ask for help (which teachers are helping with); she talks but prefers not to; I've spoken to a gp and they gave me resources for pediatric anxiety; I could be wrong, I constantly doubt myself, but I have 99% confidence here; I have blue eyes and she has brown eyes. Not all of my family with ASD/traits survived into our 30s (increased social and independence demands). In my mind there is wellness, life and death consequences. I am "fine" but I am so not fine. I definitely was not fine ages 15-35. I am very much struggling with my difference and sensitivity relative to the workplace. I am very much digesting my own diagnosis and grieving past (and recent) traumas.

Academically she is a star at school, just as every other ASD woman in the family were ---- until we break. This pamphlet is spot on for our type: NASEN "Girls and Autism: Flying Under the Radar"

Itendswithmexx wrote:
Go to an educational psychologist and they can double test her for everything. If you’re not satisfied get another opinion but make sure the opinion is formed after thorougher and intensive extensive ? screening.

Yes. I may even go back to the previous assessor. My (NT) husband offered to do more of the parental testimony since my Autistic perspective may have inadvertently masked my daughter's. I want to be in a "strong" place to face this again and also I want my daughter to be in the right place for it. Before she was taking my direction (reluctantly at best), but now she's old enough to direct this herself. I want this to be on her terms.

Thank you for your input. It's been a year since her evaluation and yet I was up at 2am this morning thinking about all this, b/c next month we need to select a middle school for her ... it begins. Your response is timely that way.

BTW - Welcome to WP.



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17 Oct 2021, 11:16 am

I'm sorry you're still facing this hurdle getting a diagnosis for your daughter.

I'm just a little confused when you refer to "female autism". What is different about your daughter's presentation? In what ways do you say girls have different autism from boys? Some autistic boys / men are extroverted like you describe, and some boys / men also mask. Likewise some autistic girls / women don't or can't mask. I don't think masking should preclude your daughter from the right diagnosis assuming the assessment includes psychometric testing. It's pretty much impossible to mask on that, or fake it. She does sound like she's on the spectrum from what you've described. You must be so frustrated by this process!

I hope you can find a new doctor who has half a brain. :( Have you tried going through your local university?



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17 Oct 2021, 3:36 pm

^^ Thank you. The hurdle is internal in part: when and how to take the next step. There are two universities I could check; thanks for the tip.

My daughter (as did I and my mother and grandmother) presents as the well-behaved, outstanding student described in the NASEN link I included previously. She reciprocated "too well" to be Autistic according to the evaluator --- according to the article that's more common in girls.

Big picture: I would like criteria/diagnostics revised to include those who don't fit the criteria that is biased towards an antiquated ASD "norm". This makes complete sense to me and probably to the researchers who have ASD, but maybe not to the NT crowd. They need specifics, so I am thinking of the tendency of girls (in a binary culture) to be socialized a certain way and/or have biological differences from boys such that Autism is more likely to present differently than the current stereotype (a certain type of boy). Really it's not about "female" Autism but rather a "not-current-stereotype" Autism, but the most bang for the buck is "female", even though it doesn't apply to only females nor all females and it applies to all other types of people along different axes of difference.

I was ineffective at work b/c I would be asked if my boss discriminated and I kept saying "yes, against anybody who's not like him" and no action would be taken. Finally a lawyer told me I needed to use the current culture's terms for a class: female, Black, LGBTQI+, disabled, (low-income) etc. So likewise, I'm trying to call out the next largest minority group here. It doesn't feel nice (woe to the intersectional minority), but apparently it can elicit action better (and action was finally taken at work, but too little too late). So stupid to have to name the infinite number of differences rather than simply say "not sameness". Bluck.



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18 Oct 2021, 8:30 am

I don't really have an answer, but I just want to say I understand the challenges you're facing. As you know from your own experience, things get worse from 15-35 and then it's easier to get a diagnosis because you're more obviously struggling.

It's too bad that we have to fail before getting the help we need. But most children I know with ASD had to fail first at public school before they could be sent to a private special needs school. It's just the way the system is set up. As a mother, you want to prevent as much pain and despair as possible, but it's not possible. Your daughter is really lucky to have you, who understands. I hope that's some comfort.



SharonB
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19 Oct 2021, 9:16 am

^^ Thanks for the shared experience.

So much for preventative healthcare. :(

Just in the past week school demands have increased and my daughter's acute anxiety is manifesting more. Soon the healthcare providers will be able to "see" it. Will the tip of the iceberg be sufficient? (Despite my testimony, the previous report said she had no anxiety. WTH.) Generally I am an "under protective" parent, but in this case there is a significant safety risk (mental health).

I may be manifesting an ASD-like tendency: watching, watching, watching ... "watch out"!; passive, passive, passive .... "war"! Or it's just my personality. :wink:

I appreciate the support. This is very painful for me b/c it resonates with my (painful) past. Deep breaths. Patting my own head in comfort. It's consuming and hard to hold it myself, yet the overwhelm to me is in itself overwhelming to others. Phooey. One day at a time.