Adult Female Diagnosis Question

[Aspea]

Hi there, I am a 30s female in the US, and I believe I am Level 1 autistic. I have read that this means it would be very difficult to obtain a diagnosis, and that females are often misdiagnosed or dismissed altogether. How can I find out where to go that has experience in diagnosing females on the spectrum? I am seeking a diagnosis so that I will have access to workplace accommodations. Thanks.

 

[Aspychata]

Welcome to the forum.

 

[MyLifeAsAnAspie]

Welcome to the forums. What accommodations and have you tried asking for them already?

 

[Crossbreed]

See Finding Support Resources in the USA...

 

[SusanLR]

Welcome Aspea.

I asked a psychiatrist I've known for many years, and he knew a female psychologist
who did diagnosis' and had two autistic children of her own.
She also took insurance.
Guess I just got lucky. I wasn't diagnosed until in my mid fifties.

 

[Alexej]

Hi @Aspea and welcome to the Forum.
This is a good place to get info and support

 

[Owliet]

Welcome!

 

[VictorR]

Hi! While she no longer maintains a public list of professionals with experience on diagnosing women on the spectrum, if you contact Kristen Hovet directly with details on your area (Clink here for link to her website) she should be able to make some recommendations.

 

[Aspea]

Thanks everyone! I clicked on those links and sent out a few emails, so we'll see what kind of responses I get. As for what type of workplace accommodations--I recently found out that you can ask for a job coach, written instructions instead of verbal, or to be placed away from noise. I have never asked for these things before. But these are things that would be hugely helpful for me. I have read that employers are not required to provide access to these things unless the employee is formally diagnosed. I also read that accommodations in college are not provided unless there is a formal diagnosis.

 

[MyLifeAsAnAspie]

As for what type of workplace accommodations--I recently found out that you can ask for a job coach, written instructions instead of verbal, or to be placed away from noise.

"Job coach", isn't that what a supervisor's job is? I realize they have to be a good supervisor for that to be true. The other two sound like something reasonable to ask for without providing a diagnosis. If they would help you perform better, why wouldn't they try to provide them? I just retired, but looking back I probably should have asked for more accommodations. I think it would have been better to do it without a diagnosis. You can just say things like "I am more distracted by noise than most people".

College is another issue. Yes, a formal diagnosis is needed for accommodations. I went to my college website and they stated that explicitly.

I do not have a formal diagnosis BTW.

 

[tree]

https://news.mit.edu/2022/studies-autism-women-bias-0908
In recent years, researchers who study autism have made an effort to include more women and girls in their studies. However, despite these efforts, most studies of autism consistently enroll small numbers of female subjects or exclude them altogether, according to a new study from MIT.

The researchers found that a screening test commonly used to determine eligibility for studies of autism consistently winnows out a much higher percentage of women than men, creating a “leaky pipeline” that results in severe underrepresentation of women in studies of autism.

This lack of representation makes it more difficult to develop useful interventions or provide accurate diagnoses for girls and women, the researchers say.

“I think the findings favor having a more inclusive approach and widening the lens to end up being less biased in terms of who participates in research,” says John Gabrieli, the Grover Hermann Professor of Health Sciences and Technology and a professor of brain and cognitive sciences at MIT. “The more we understand autism in men and women and nonbinary individuals, the better services and more accurate diagnoses we can provide.”

Article continues with further discussion regarding the screening process.

 

[VictorR]

https://news.mit.edu/2022/studies-autism-women-bias-0908
In recent years, researchers who study autism have made an effort to include more women and girls in their studies. However, despite these efforts, most studies of autism consistently enroll small numbers of female subjects or exclude them altogether, according to a new study from MIT.

The researchers found that a screening test commonly used to determine eligibility for studies of autism consistently winnows out a much higher percentage of women than men, creating a “leaky pipeline” that results in severe underrepresentation of women in studies of autism.

This lack of representation makes it more difficult to develop useful interventions or provide accurate diagnoses for girls and women, the researchers say.

“I think the findings favor having a more inclusive approach and widening the lens to end up being less biased in terms of who participates in research,” says John Gabrieli, the Grover Hermann Professor of Health Sciences and Technology and a professor of brain and cognitive sciences at MIT. “The more we understand autism in men and women and nonbinary individuals, the better services and more accurate diagnoses we can provide.”

Article continues with further discussion regarding the screening process.

An excellent example of structural discrimination.

 

[Aspea]

The researchers found that a screening test commonly used to determine eligibility for studies of autism consistently winnows out a much higher percentage of women than men, creating a “leaky pipeline” that results in severe underrepresentation of women in studies of autism.

This lack of representation makes it more difficult to develop useful interventions or provide accurate diagnoses for girls and women, the researchers say.

“I think the findings favor having a more inclusive approach and widening the lens to end up being less biased in terms of who participates in research,” says John Gabrieli, the Grover Hermann Professor of Health Sciences and Technology and a professor of brain and cognitive sciences at MIT. “The more we understand autism in men and women and nonbinary individuals, the better services and more accurate diagnoses we can provide.”

Looks like they need to do some fine-tuning of the ADOS. However, I would prefer an objective biological marker or test/scan developed to diagnose autism (imagine going in for a brain scan to be diagnosed instead of these subjective tests given by psychologists/psychiatrists). More cost-effective, too. I have read some interesting theories about autism being associated with differences in the cerebellum, but that is another topic and I do not want to derail this one.

As an update, I have identified at least three sources I can pursue for a diagnosis, but have not yet taken that step. I am still exploring if the benefits outweigh the potential downsides at this time.