Autism in girls!

[NicolaJHeady45]

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

[Shesinfashion]

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.

[DawnMumsnet]

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

[Melawati]

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.

[ConstantCraving]

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!)

[NicolaJHeady45]

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]

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

[NicolaJHeady45]

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.

[MailonlineEffOff]

Your link is broken.

[Xmasbaby11]

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.

[Dellarobia]

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?

[Dellarobia]

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.

[Dellarobia]

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.