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Petitions and activism

Autism in girls!

40 replies

NicolaJHeady45 · 28/04/2016 16:41

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

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NicolaJHeady45 · 29/04/2016 12:41

Hi thank you again for the feedback and input. This is really helping my husband and I to understand more about autism in girls. I know it is all confusing but this link that I have put on is an interview with Dr Judith Gould who is a leading specialist in autism in girls. This was done 6 months ago and again states how classifications are still male biased and hinders girls getting diagnosed.

vimeo.com/144762652

For those of you who are interested in this could you please give me some ideas on how to make my petition more appealable (is that the right word lol) to get more attention on the subject.

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NicolaJHeady45 · 29/04/2016 12:52

Should I make the emphasis more on ensuring that ALL assessment procedures in the UK should be consistent and incorporate female presentation? I can edit my petition at any point. Yet if the DSM-V influences the assessment criteria how would we go about ensuring all professionals in this area utilise the same criteria??? Any ideas would be greatly appreciated.

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PolterGoose · 29/04/2016 12:57

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zzzzz · 29/04/2016 12:59

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NicolaJHeady45 · 29/04/2016 13:02

This is up to date information if you are still interested :)

network.autism.org.uk/knowledge/insight-opinion/interview-dr-judith-gould-women-and-girls

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craftyoldhen · 29/04/2016 13:21

I think recognition of girls with autism is slowly getting better. My DD is highly verbal and intelligent but her difficulties were still picked up by her school and the diagnosis process for her was relatively straightforward.

What has been difficult is accessing help and support for her. There's nothing out there for many kids with HFA (boys included).

Schools only seem to act when a child's behaviour is affecting them or other pupils, so a child that directs their distress inwards rather than outwards is ignored. And the tendency to internalise is more common in girls and women, so from this side I things I do think girls with HFA are more easily dismissed and left unsupported.

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NicolaJHeady45 · 29/04/2016 13:22

She has just seen a clinical psychologist and they advised us that she does display autistic traits, additionally ADHD traits and anxiety disorder. However if all her issues do not fit the medical model of either autism, ADHD or anxiety disorder (basically tick all boxes) she will not receive help. She agreed that the autism criteria is still male biased. Hence my frustration with the criteria and wanting to change it. I am not trying to create new criteria to slot my daughter into if that makes sense. The criteria is already there and she fits it perfectly..it's just that our professionals and systems do not use it.

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NicolaJHeady45 · 29/04/2016 13:31

I think that I have just had really bad experiences with all of this. I went to parents evening a month ago and although my daughter had missed 30% school days due to her anxiety she had still managed to keep up her grades and excel in maths and science. So proud of her x However when I came to the last teacher she advised me in her own words 'I can tell you now your daughter does not have autism. She is just trying to be somebody she's not. She doesn't need to do that..she just needs to be herself. I did a 30,000 dissertation on autism and I can guarantee you that she will not be diagnosed with autism.' Shocked was not the word. This is the experience that we are having with regards to my daughter.

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zzzzz · 29/04/2016 13:39

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NicolaJHeady45 · 29/04/2016 14:26

Thanks. Although this is really what she told both my husband and I. You can imagine the anger. She had been referred as urgent to CAHMS and then to be told that. Hence our petition. I will inform her of what you have said when we see her in the next few weeks. I will also post on the SN board.

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craftyoldhen · 29/04/2016 16:41

I'm not 100% sure but I don't think a clinical psychologist is the correct person to diagnose anyway (although they might be involved).
Strictly speaking your DD should have a multiplinary assessment, with imput from a SALT, paediatrian, education psychology and possibly OT and any other professionals involved with your DD (school etc). That is what the NICE guidelines recommend for autism assessment on children.

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ConstantCraving · 29/04/2016 18:59

Hi
There's no doubt a diagnosis can improve support. We were told support was not dependant on diagnosis - but after 18 months of next to nothing, within a week of getting the diagnosis DD's 1:1 was sent on a sensory processing course, and school commissioned an OT report....

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StarWars12 · 01/05/2016 17:11

Hi guys I went on SN chat but I got conflicting feedback about getting help without a diagnosis??? Could it depend on where you live getting help or not?

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SarahVineTory · 01/05/2016 17:49

OP I suggest you also post in feminist chat for some advice.

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StarWars12 · 01/05/2016 18:22

Thanks :)

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