Autism in girls!

(41 Posts)
NicolaJHeady45 Thu 28-Apr-16 16:41:40

Is anyone experiencing or has experienced the same thing as we have with regards to Autism in girls. We are having a rollercoaster of a time with our beautiful 11 year old daughter not going into details but it's been hell. Getting any help has been seriously impossible. Which is why we have started our petition to help girls with autism access services quickly not over long drawn out months or years. Any feedback would be great x
you.38degrees.org.uk/petitions/autism-spectrum-disorder-the-hidden-generation

zzzzz Thu 28-Apr-16 17:06:30

Why do you think girls need to be prioritised?confused

Shesinfashion Thu 28-Apr-16 17:23:21

Perhaps the OP feels that girls are disadvantaged when it comes to the diagnostic process. For what it's worth I never found this. My DD was diagnosed aged 5 after a series of very thorough assessments over 3 years.

zzzzz Thu 28-Apr-16 17:35:19

Perhaps she does, but would that be true and if it was what would be the effect on prioritising based on gender?

PolterGoose Thu 28-Apr-16 18:05:21

She's not asking for girls to be prioritised, just for clinicians to understand and recognise autism in girls so they don't get missed. It's a huge problem.

However, MN has a board for petitions and this should be there.

DawnMumsnet (MNHQ) Thu 28-Apr-16 18:20:03

Hi, we're moving this thread over to our Petitions topic now.

zzzzz Thu 28-Apr-16 18:21:40

They'd have to massively change that to get me to sign. The premise seems to be that girls don't fit dsm v but should be diagnosed anyway by morphing the criteria shockconfused. Endlessly changing the population that is "autistic" is infuriating if you want to research or understand anything.

Melawati Thu 28-Apr-16 18:29:03

Is it about accessing services or getting a dx? Tbh once we started on the path, getting a dx was relatively quick and straightforward. There are few services on offer in our area though for any late dx children and families, so it's sink or swim for boys or girls. But since boys do tend to get dx earlier they usually have a better chance to access what is available.
Getting the different presentation of girls with ASD recognised for what it is by the 'gate keeper' professionals - GP, teachers, SENCO, HV, might help with earlier dx. But I agree, trying to change the dx criteria just muddies the water.

PolterGoose Thu 28-Apr-16 18:31:15

Thats why I haven't signed it zzzzz, and whilst I support the need for greater understanding of female autistics (obviously), I think the petition is poorly worded and flimsy.

OP - I was diagnosed against both DSM5 and ICD10 criteria, they are perfectly adequate to diagnose girls and women, especially the DSM5, what's often problematic is poor understanding among clinicians of how girls and women present, and outdated reliance on typically male stereotypes.

ConstantCraving Thu 28-Apr-16 20:28:29

Actually there are increasing calls from professionals to adapt the diagnostic criteria to be more reflective of the different presentation in women and girls. Many will never get the referral for diagnosis, and so go unsupported for years (e.g. my sister, misdiagnosed with schizophrenia aged 18, re-diagnosed with ASD aged 48).
The current diagnostic criteria are based on the behavioural characteristics of men and boys, who are often more noticeably 'different' or disruptive than women and girls with the same underlying deficits. The current international diagnostic criteria for autism (in ICD-10) do not give examples of the types of difficulties experienced by women and girls.
My DD got a diagnosis of ASD aged 5years - so its not unheard of, BUT she's apparently the only girl with ASD in her primary (err ... I think NOT!)

zzzzz Thu 28-Apr-16 20:45:01

Well that's exactly what this is "a call for professionals to adapt the criteria" confused what I was saying is that it makes what little research there is even harder to evaluate.

I say that as the mother of a child with a penis who didn't fit the criteria neatly and took nearly 11 years to Dx

NicolaJHeady45 Thu 28-Apr-16 21:59:33

Thanks for all your feedback it is really appreciated. I'm so sorry if my petition is confusing people. I'm not the most skilled and articulate writer. Our aim is basically to create better awareness that girls present differently to boys. I know that there are many people out there that do know about the differences but there are just as many that don't. I have personally spoken to social workers, teachers and doctor's who had no idea about the differences. I aimed the petition at the DSM-V as this is what influences the assessment procedures for many professionals and it is still male biased. My daughter has always presented with autistic traits since the age of three and was diagnosed with SPD at the age of five. Yet I knew as a mum that something was not quite adding up. Her behaviour, her social interactions etc were different to that of her peers. However medical and school opinion never reflected this. Her high intelligence, coupled with her immense coping strategies, have concealed her true anxiety levels and impaired social interactions. To cut a very long story short since attending secondary her anxiety levels have amplified and she can't hide it no more...and only now they are starting to take notice of her autistic traits. Unfortunately it has meant an urgent referral to CAHMS because of mental health issues ie depression and anxiety etc etc. You see the crux of this matter is that my daughter was born with only half a right arm and an enlarged heart so I can assure you as a mum I do not want to label her with yet another medical tag. However labelling is the only way to get her help. I don't care what label they come up with as long as I can get her professional help to make her life better. What I am fighting for is for the DSM-V to be adapted to help girls get diagnosed more effectively and if that happens that should filter down to the professionals on the frontline. If any of you would like to come on board with this petition I would really really appreciate the help and support. Thanks so much again. I hope this makes you understand why I am doing it x

NicolaJHeady45 Thu 28-Apr-16 22:09:25

Thanks for putting this on the petitions thread. I didn't realise you had this. Thanks again.

NicolaJHeady45 Thu 28-Apr-16 22:45:57

I agree with the mudding of waters quote. It has taken me years of sifting through research and opinion to even begin to understand my daughter's needs. Yet if we didn't continue to muddy waters we would still be using the 'refrigerator mother theory' as a reason for children being autistic. I still believe that this is an urgent issue and needs immediate attention. I love my daughter with all my heart and would do anything for her. I worry for the children (and parents) who rely on professional advice and help that are unaware of how girls present differently and what the outcomes may be.

zzzzz Thu 28-Apr-16 22:51:18

Changing the criteria is not the same as suggesting different cause.confused

MailonlineEffOff Thu 28-Apr-16 22:55:38

Your link is broken.

Xmasbaby11 Thu 28-Apr-16 23:02:27

Dd is 4 and seeing a paediatrician due to various problems and possible autism. The paediatrician herself said autism presents differently in girls and is more subtle. She couldn't work out whether it was worth having her assessed and aemitted she was difficult to diagnose. Dd's speech is fantastic but her eye contact and social skills are poor. I don't know what will happen but I got the impression there is less understandING about girls who are on the spectrum.

PolterGoose Fri 29-Apr-16 07:26:33

Nicola I understand your argument but I think you're aiming at the wrong target. The DSM5 diagnostic criteria isn't the problem, it's how it's interpreted and applied that can be.

I am sorry you've had such a tough time flowers

Dellarobia Fri 29-Apr-16 07:34:38

I don't know have a lot of personal experience of autism. But speaking from an outsider's perspective, it seems to me saying that changing the criteria makes research into autism harder, while true, is a weak argument if the criteria are not as accurate as they could be. Surely getting the best criteria and most accurate diagnoses is more important than sticking with less than ideal criteria to benefit research?

zzzzz Fri 29-Apr-16 08:20:36

Well firstly you'd have to agree that the criteria itself is weak (and dsm v was only published very recently with major update to this section), and secondly the issue is identifying "like" populations in research which is already pretty challenging.

zzzzz Fri 29-Apr-16 08:22:25

That's not to say I don't agree that not all clinicians are skilled in recognising the female presentation.

I think polts take on focus of change is better.

Dellarobia Fri 29-Apr-16 08:32:48

Yes, I do understand the challenge of identifying 'like' populations. I'm just saying that seems to me a secondary consideration compared to getting the most accurate criteria. And that the definition of 'most accurate' may be influenced by the relative difficulties in diagnosing girls.

zzzzz Fri 29-Apr-16 09:21:51

I don't agree. I feel the criteria is good and robust but the application clumsy.

PolterGoose Fri 29-Apr-16 09:35:16

Della by your own admission, you don't have much experience of autism, I'm not sure how you can argue for a criteria change if you don't know much about the criteria confused

The DSM5 isn't perfect, but the problems as have been raised here and elsewhere are:
- poor understanding by gatekeepers meaning girls and women don't even get referred
- an over-reliance on diagnostic tests which are based on male presentations of autism
- entrenched stereotypes

It's also worth pointing out that this under- and mis- diagnosing applies mostly to intellectually able, verbal girls and women. Boys with more subtle presentations are often missed too.

The average wait from referral to diagnosis for any child in the UK is 3 years, that's the biggest scandal at the moment. 3 years is a lot of time in a child's life.

Dellarobia Fri 29-Apr-16 11:20:37

Absolutely Polter I am happy to admit that I can't comment on whether the criteria are accurate or not. You're probably right and it's more an issue with applying the criteria than changing them.

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