Gender bias in Autism assessment

[StarWars12]

Hi everyone I am looking for feedback on autism and girls. My husband and I have started a petition to try and make the autism assessment less male biased. Does anyone have experience in this area?

[TwoLeftSocks]

I don't know as much about ASD but have read quite a few articles suggesting a similar problem in under-diagnosis of ADHD in girls, down to presenting differently.

[Branleuse]

my dd is waiting for ADOS assessment, but im unsure she will get a dx because whilst the senco and the paed all nodded and talked about how it presents differently in girls etc, when they sent me the actual form, it was basically a checklist for male presentation

[PhilPhilConnors]

Branleuse, could you include your own checklist that covers how girls present?

[Branleuse]

I guess so, but shes been given the ados anyway. I hve already sent the form back with a covering letter. Need to wait for the appointment now.

I think changes are underway, and people have better knowledge, but it takes a while for that to filter though to the people that make the big decisions

[PhilPhilConnors]

To a certain extent it's a postcode lottery. My neighbouring trust are better at diagnosing girls and boys who mask.
If we were registered at a GP practice across the road, this is where we would have been sent.
Instead we are sent to the CDC with a not so good reputation, although they are good at identifying more stereotypically presenting children.

[AGnu]

I went to my GP a couple of years ago to try & get a referral for myself. GP said the waiting list was a year long as if ASD will get better in a year because of people like me thinking they have ASD. She reluctantly said I could come back to "state [my] case" but I wasn't feeling strong enough to fight for it. I've not been back to the GP since & won't see her again - I'd only just started to trust her enough to talk about it.

I'd like to know how many assessments don't result in a diagnosis. I'm an intelligent adult who struggles with some aspects of life & has just enough self-awareness to identify why. It took 6 years after I first started learning about ASD for me to recognise it in myself... obviously I don't have that much self-awareness!

I'm figuring things out by myself but it would make things so much easier if I could explain to people with some authority why I struggle with things. I know someone who struggles more than I do & she can't get a referral either.

[StarWars12]

I think that in time this is going to become a major issue for government. I wonder sometimes if the lack of referrals is down to cost? I personally think that if they speed up the assessment process and adapt it so that it serves both males and females; it will open up a huge can of worms and put immense pressure on the already underfunded mental health service. My concerns are for all those missed, misdiagnosed, underdiagnosed children and adults that are suffering unnecessary anxiety and depression and a low quality of life :(

[TwoLeftSocks]

I know this was started about autism but this just popped up in my fb feed and seemed relevant...

bust.com/feminism/16250-why-adhd-is-a-feminist-issue-and-what-happens-when-it-s-overlooked.html

I wonder if it reads the same if you replace ADHD with autism, and vice versa in other articles.

(I should add, it think this is a US article and the reference to ADHD bring over diagnosed isn't that relevant to the UK, where I've read that it's still under diagnosed).

[Meeep]

They don't use ADOS where we live, not sure if that's for girls only.

[FutureGadgetsLab]

For me it wasn't the assessment but other people's perceptions. And how long it took to get the assessment.

"You don't look autistic!" "You can't be autistic because you dress nicely."

[StarWars12]

A question for everyone :) If I needed to get individuals, girls or women who either have autism or have been through the screening assessment to share their experiences; how would I go about this? I have looked for another campaign that addresses the gender bias in autism but have yet to find one that is currently campaigning to address this worrying issue. Can anyone help?

[FutureGadgetsLab]

You could ask on some autism forums?

[StarWars12]

Thanks I will try that x :)

[Noneedforasitter]

If you are thinking about the UK, you could try Ambitious about Autism, or the National Autistic Society.

[Msqueen33]

My dd is six and was diagnosed in October last year. Thankfully ours Is done via panel comprising of a speech therapist, ed psych and her paediatrician. I do think the assessment is based on the male presentation of autism. We got a diagnosis and they were very good but I do think for high functioning girls they can get missed because autism in girls presents very differently to how it does in boys,

[Snowshimmer]

In which ways does it differ - I would like to know what the signs are for girls.
Is there a test or checklist for girls available online?

[StarWars12]

Thanks for all your help everyone :) I have set up a face book page if you are interested in knowing how girls present but as I am not technical in the slightest I'm assuming that you can see all the articles that I have posted and shared. If not I can post some really good links into how girls present differently. especially high functioning. Let me know how you get on :) Here it is bit.ly/22K34xV

[StarWars12]

Thanks for all your help everyone :) I have set up a face book page if you are interested in knowing how girls present but as I am not technical in the slightest I'm assuming that you can see all the articles that I have posted and shared. If not I can post some really good links into how girls present differently. especially high functioning. Let me know how you get on :) Here it is bit.ly/22K34xV