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Gender bias in Autism assessment

(44 Posts)
StarWars12 Sun 01-May-16 18:36:04

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?

Emochild Sun 01-May-16 18:55:57

My dd has been through the process

The ADOS assessment was not the problem -it was getting someone to refer her for that assessment in the first place

She actually reached breakdown before she was assessed -apparently not an uncommon story

GiddyOnZackHunt Sun 01-May-16 19:01:05

Yy, it was getting to the assessment stage that gave us the most trouble too.

StarWars12 Sun 01-May-16 19:16:54

Could I ask was that because of the criteria that was used to get to the assessment stage?

strawberryblondebint Sun 01-May-16 19:17:48

I must be in the minority. Dd (5) was referred for ADOS via speech therapy and local children's assessment. I didn't feel a gender bias and she was diagnosed as ASD (despite me not really wanting a diagnosis / burying head in the sand)

Mayor22 Sun 01-May-16 19:33:23

My DD had a brilliant clinical psychologist who recognised the differences in the presentation of girls, for example an example of her obsessive behaviour is collecting sticks and stones etc. Not that unusual for children but for DD it is so obsessive it leads to meltdowns if you try and stop her, she can't be distracted by ice cream even - so they were clued up in how to adjust wording of questions and criteria. I'm so thankful as I was so worried she would not be assessed fairly because of the focus on boys' presentation.

Emochild Sun 01-May-16 19:37:21

Ok a bit more detail about dd...

When she was 2 I said to the HV that I thought she was showing unusual behaviour -she was lining stuff up, wouldn't eat food that touched on a plate, had issues with specific items of clothes -sock seams, labels -that sort of thing

But she was incredibly verbal and was already starting to pick out words in books

I was told she was just intelligent and to enjoy her

She had friendship issues all the way through primary but this was put down to girls being girls or the fact that her emotional level didn't match her intelligence level

Showed signs of stress at home but didn't display this at school

Went to high school and things fell apart -she was aggressive at home, stopped going out, dropped out of all her extra curricular activities, anxiety through the roof -but a model pupil at school

Until we reached total school refusal, daily panic attacks, withdrew from everyone and everything

School in our area can refer to camhs -they didn't because they saw it as a truancy issue
GP can refer but wouldn't because dd wouldn't leave the house to go to GP
We were bounced between GP and school for months until DD was in crisis, refusing to eat or drink, had been wearing the same clothes 24/7 for 4 weeks and hadn't washed in that period either

GP came and did a home visit and camhs came out 5 days later for an anxiety and depression referral

Camhs decided to do the ADOS assessment after that first meeting

I was even told by school that there was no way dd would get an ASD diagnosis as she contributed in class and had friends -apart from she didn't have friends, she had people she spoke to in school, or hung around on the edge of the group at school

I think prior to meeting camhs, people just didn't have ASD on their radar
She made eye contact (but was uncomfortable doing it if anyone asked -it's just no one ever did)
She didn't have any strange obsessions (she had obsessions, they just weren't strange so didn't stand out)
She had friends (or could maintain the appearance of having friends)
She had no learning difficulties
She had no speech and language issues (other than being very blunt/literal but that was viewed as a personality trait rather than being something she struggles with)

She just didn't fit the traditional role

GiddyOnZackHunt Sun 01-May-16 19:41:48

No I don't think so. Her school missed it totally despite me signposting it because she is clever and they were useless. Their initial referral was weak and she was referred back to the school nurse.
A change of school to one with a decent SENCO and a re-referral lead to an appointment at which point the doctor was baffled as to why it had taken so long for her to be seen. hmm And an informal diagnosis on the spot.
Schools need to pick up HFA particularly in girls much earlier.

Mayor22 Sun 01-May-16 21:43:54

Emochild your DD sounds very much like mine, though my DD is only 6 and I'm dreading her getting older as she is already really anxious about school and having full on meltdowns and explosions after school but is a model pupil whilst there. I'm worried about her future, especially because school don't seem to really take her diagnosis that seriously as she always appears "fine" whilst there. Your post has just encouraged me to keep fighting for help for her. I hope your DD is getting the support she needs from appropriate services now.

Emochild Mon 02-May-16 07:17:08

Thanks mayor

She's currently being educated by the medical needs team after missing some of year 8 and most of year 9
We are starting to talk about her going to school in September for the start of year 10 but there's no way she could go back to her old one so i'm trying to find one that will be supportive of her needs -which is tough because she needs to be in a low pressure environment where she can make choices
She doesn't fit in a special school as academically she is way above age expectations

If I'd have known aged 6 what I do now, I would have gone down the home ed route (finances allowing obviously)
The last 3 years have made me realise that my child's mental health is so much more important than school

Message withdrawn at poster's request.

FayKorgasm Mon 02-May-16 10:12:31

My dd was diagnosed in Ireland and I literally presented all my research into female ASD to my gp and said that is my daughter. I was referred and altjough I felt fobbed off a bit I stuck to my guns and got a diagnosis of HFA.

MrNoseybonk Mon 02-May-16 10:59:54

I must be in the minority. Dd (5) was referred for ADOS via speech therapy and local children's assessment. I didn't feel a gender bias and she was diagnosed as ASD

Same story here. A lot depends on your loca CAMHS. Ours is notoriously bad, and I know girls and boys struggling to be referred and get diagnosed, but plenty of both who have.
I don't think there's a gender bias in our area. Girls are being diagnosed a huge amount more now than they have been in the past.

riceuten Mon 02-May-16 11:19:33

The problem being, of course, that autism's higher prevalence amongst males of the species skews the whole thing towards them.

Micah Mon 02-May-16 11:30:34

The problem being, of course, that autism's higher prevalence amongst males of the species skews the whole thing towards them.

Is it of higher prevalence amongst males, or just less frequently diagnosed in females, as posters above are saying?

I read a study ages ago on this, and i think the conclusion was that incidence in girls is way, way higher than stats show. Many reasons- firstly because if the gender thing, hcp dont look for it in girls, and secondly because it doesnt "fit" - girls are expected to be more social, so they copy their peers, which masks any autistic behaviours.

riceuten Mon 02-May-16 11:57:57

Yes, because the perceived prevalence is high, that probably affects the rates of detection - some interesting statistics from the NAS

Statistics show that more men and boys than women and girls have a diagnosis of autism. Various studies, together with anecdotal evidence have come up with men/women ratios ranging from 2:1 to 16:1.

Brugha's 2009 survey of adults living in households throughout England found that 1.8% of men and boys surveyed had a diagnosis of autism, compared to 0.2% of women and girls.

Hans Asperger thought no women or girls were affected by the syndrome he described in Autistic psychopathy in childhood (1944), although clinical evidence later caused him to revise this thinking.

In Leo Kanner's 1943 study of a small group of children with autism there were four times as many boys as girls.

In their much larger 1993 study of Asperger syndrome in mainstream schools in Sweden, Ehlers and Gillberg found the same boy to girl ratio of 4:1.

In 2015, the ratio of men to women who use NAS adult services was approximately 3:1, and in those that use NAS schools it is approximately 5:1.

Lorna Wing found in her paper on sex ratios in early childhood autism that among people with 'high-functioning autism' or Asperger syndrome there were as many as 15 times as many men and boys as women and girls, while in people with learning difficulties as well as autism the ratio of men and boys to women and girls was closer to 2:1.

So, there, but not the massive gap there was previously

PhilPhilConnors Mon 02-May-16 11:58:39

I went through the diagnosis process as an adult, the diagnosing psychologists fully took into account the fact that I am a woman, but I was lucky in this respect, some areas still stick rigidly to make presentation of autism, which means women are more likely to be misdiagnosed.
This took into account things like body language - women and girls are more likely to mirror body language, and more subtle social stuff that boys are less likely to do. So during my assessment, they really listened to what I said and gave less prominence to body language.
During my ados assessment, there was a puzzle I had to complete with pieces missing. They acknowledged in my report that this bothered me, but I continued ok, but they also acknowledged that girls are more likely to have learnt to cover up their feelings about things. (I was very bothered, and it still annoys me now nearly three months later!)
Unfortunately our local CDC that diagnoses children does not yet take into account that many children can expertly mask (more likely to be girls, but there are also boys - my Ds included) and dismiss parent's experiences in favour for school's, and consequently failing many families.

I think the things that need addressing are that anyone involved with the diagnosis process must take into account the different presentations.
Teachers' roles in the diagnostic process should be limited, they are not trained to spot the more subtle presentations, and therefore their voices of "no problems here" should not be given more prominence than parent's information and evidence.

PalmerViolet Mon 02-May-16 13:19:53

riceuten, your post doesn't answer the question.

All the studies you quoted are analyses of people who have been diagnosed with ASD in varying degrees.

I agree with Micah, the difference isn't with numbers of female:male with ASD, but with crushingly low levels of females being diagnosed due to the differences in presentation. Almost all diagnostic tools are geared toward male presentation, therefore the results will be skewed.

It is well known within the ASD community that there are far more undiagnosed females about. Anyone who doesn't have a completely typical presentation seems to get brushed off. Hence it taking 8 years for DS to finally get his diagnosis.

Noneedforasitter Mon 02-May-16 15:41:50

I've just read Neurotribes by Silberman, which is a history of the condition. One of the most striking features of the book is how recent the scientific understanding is, and how much is still unclear. Leo Kanner, for example, (mentioned above by another poster and one of the early 'authorities' on the condition) believed AS to be extremely rare, which is patently incorrect.

My daughter has AS. She was diagnosed at the age of 12, principally because she was referred to a psychiatric unit for self-harming, and it was identified there. I don't believe there was any male-bias in the psychiatric assessment, but other professionals (particularly school) didn't identify the cause of the problem. I suspect that was due to a lack of understanding generally (particularly outside psychiatric services), rather than a specific male-bias in diagnosis. Having said that, my wife does believe that her behaviour would have been more readily identified as probable AS by her school if she had been a boy.

Lightbulbon Mon 02-May-16 15:59:24

The baron Cohen test is very male biased.

StarWars12 Mon 02-May-16 19:10:14

Thank you all for the messages. They have really helped us understand more about our beautiful daughter and to continue with our fight to get her help. Here is a link to an interview with Judith Gould in 2015 who is a specialist on girls with autism. This states that diagnosis and assessment is still male biased unfortunately sad

StarWars12 Mon 02-May-16 19:25:05

I have tweeted Alistair Burt with my petition link and he advised me that this was in his words a worrying issue that had been raised at debate this week in fact. Which is fantastic but what would you ladies/gentlemen suggest that the way forward would be? The DSM-V influences the criteria of autism assessment - could that be changed or is that too much of an ask? How can we ensure all of the UK uses a consistent assessment and diagnostic procedure? I am determined to not let this go as I believe there are thousands of girls who have been missed, misdiagnosed or underdiagnosed with autism. Many of them I believe have fallen under the mental health umbrella diagnosed with anxiety disorder, OCD, ADHD etc or other co morbidity. I have known my daughter to present with autistic traits since the age of three but school and medical opinion have never reflected this. It has taken for her to be referred to CAHMS as urgent to get any kind of acknowledgement sad

TheMaidWasInTheGarden Mon 02-May-16 22:03:18

I think this article may help OP, as you are in feminist chat.

Has anyone suggest that you have an assessment too?

BumpAndGrind Mon 02-May-16 22:21:35

I got a DX for ASD as an adult.

That missing piece still bothers me 5 YEARS later!

PhilPhilConnors Mon 02-May-16 23:34:28

Was the missing piece part of the assessment then? Sneaky fuckers!
I score high on the aq test, but apparently overcompensate by masking.

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