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Here are some suggested organisations that offer expert advice on special needs.

What should I ask for from school?
10

Seasidetrains · 23/05/2022 12:28

DD (13) has been experiencing worsening behavioural/mental health issues for the past few years. Took her to A&E in December after a severe episode, got emergency CAMHS referral, CAMHS were worse than useless and basically denied any problem while simultaneously blaming our parenting for the problem. She has now been discharged from CAMHS which is an absolute joke if you ask me. GP (who has met DD once) seems to think she’s autistic and is only willing to refer for an ASD assessment, which she admits will take years. DD was offered 6 weeks of counselling through school which has now finished. School keep telling me to go back to CAMHS and push for more help, GP refuses to re-refer to CAMHS. It’s a mess and DD is getting no support. FWIW i don’t think she’s autistic and am resistant to her getting that diagnosis because I feel that a) it won’t get her any help anyway, and b) all her issues will then be brushed aside as ‘oh well she has ASD’.


Anyway, DD was very keen to go on a 2-day school residential. School came back and said initially that DD’s attendance is too low to attend (that’s how they are selecting pupils to go). I responded saying the absences due to mental health are medical absences and shouldn’t count towards attendance. They responded saying they ‘don’t think she has the ability to cope’ with the trip. Which I do understand on one level, but also this seems like discrimination, and if she had a formal medical diagnosis, surely they wouldn’t be allowed to do that? The residential trip itself is not a hill I want to die on but it does illustrate to me that DD is in a grey area where she is both not getting any tangible help for her issues, while also being disqualified from doing things because of the consequences of them. I would like to get things on a more formal footing re: her needs which the school, does anyone have any tips on what I should do/ask for?

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AReallyUsefulEngine · 23/05/2022 12:57

In some areas you can self refer to CAMHS, or school could re-refer.

If DD is missing several days of school are the LA providing alternative arrangements for education? Have you also applied for an EHCNA? What other support are the school providing? Support in schools is based on needs, rather than diagnosis.

ASD in many girls first comes to light in teen years due to mental health difficulties. If DD doesn’t have ASD then an ASD assessment won’t result in a diagnosis. But if she does a diagnosis will help, not least because it will help her understand herself and help others understand her. Why don’t you think DD is autistic?

Re the trip, the school should make reasonable adjustments but I think it would be hard for you to prove disability discrimination. That would be the same even with a diagnosis as you don’t need a diagnosis to be protected under the Equality Act.

Are you sure the absences are being recorded as authorised?

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Seasidetrains · 23/05/2022 13:10

we can't self-refer to CAMHS here, nor can school, it has to be GP, who refuses.

i don't want to go into massive detail about DD as i'm mindful of her privacy, but she basically has what looks to all intents and purposes like bipolar disorder except according to CAMHS and GP that's impossible because it can't start before age 15. her behaviour started at around 8, no issues of any kind at home or school before then. she spent her first few years in a country that screens heavily for ASD and passed 2 screeners as an infant/young child with zero concerns (i only know this from looking back at her medical records - ASD was not ever on our radar at all).

the behaviour that the GP sees as 'lack of social skills' is either when DD goes into a "hyper" (DD's term) phase, refuses to sleep for days and does or says inappropriate things, often in school. during the last "up" phase (also DD's word) she had horrible hallucinations and was vomiting with "excitement". these phases are then followed by a crash where DD will do nothing but sleep for days, refuses to attend school and can be violent. in between these phases DD is pretty much your average 13-year-old, although academically gifted. we used to have "between" phases of months, after puberty hit it's weeks.

so, yeah, if getting an ASD diagnosis would help with any of that i'd be 100% up for it. but it seems to me that we just need a proper mental health professional to offer some actual help.

that's good to know re the trip. i should just let it go i guess. it does hurt though and is another reminder of how much all these issues are isolating DD from her peers.

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Seasidetrains · 23/05/2022 13:14

we haven't applied for EHCNA, i had to look that up. DD's lack of attendance usually takes the form of being too tired to get to school on time, so having to miss half a day. she does far better mentally when she can get to school though, and she does love school, so i haven't felt the need to push for an alternative arrangement.

i do need to check how the absences are being recorded, thank you for the tip. i do tell the school when it's due to mental health but i'm not sure if that is actually being noted anywhere.

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AReallyUsefulEngine · 23/05/2022 13:20

Are you sure the school cannot refer, even if it is the school nursing team rather than the school themselves? Alternatively do you have social care involvement? They can often refer too.

I can see exactly why the GP is questioning ASD. Many women are misdiagnosed with biopolar disorder when they actually have ASD. How good was the screening? That could easily have been focused on the more stereotypical presentation of ASD rather than how many females present. Especially if DD is an expert masker, which might be why you see it as phases with DD coping between phases. The lows as you see it may be DD needing time to decompress and a version of autistic burnout.

If DD can be violent you are even more unlikely to be able to prove DD as the school are likely to be able to successfully argue decisions were made due to health and safety.

Do apply for an EHCNA if you have already. And in the meantime push for alternative provision under s.19 of the Education Act to be provided.

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AReallyUsefulEngine · 23/05/2022 13:25

That took me so long to finish after pausing part way through I X-posted.

Do apply for an EHCNA. It would give access to assessments that would be helpful and the provision in it would support DD and potentially reduce the highs and lows. It can include MH provision without the need to sit on the normal waiting list/go through the normal process, and if it is in section F of the EHCP the provision has to be provided - if CAMHS can’t or won’t provide it the LA have to fund independent provision. The support in it includes support in school.

EHCPs are separate to provision under s.19 of the Education Act 1996. If DD cannot attend full time, and given the school refused a trip based on attendance it is obviously a cause for concern, provision should be made. It can be directed towards supporting DD attending school whenever possible.

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Seasidetrains · 23/05/2022 13:41

thanks, some food for thought there. the screenings were done by private paediatricians, i'm not exactly sure what they were, but they were connected to our insurance i guess.

school have said it has to be the GP that refers to CAMHS and just keep pushing me to go back to them (doesn't help that GP is v busy/disorganised and the ratio of me contacting them to them replying is about 5:1)

i suppose it's the physical component that makes me think this isn't ASD. DD has told us how she dreads the physical feeling that one of these "hyper" phases is coming (racing heart, feeling sick, waves of excitement) and asks for help getting it to stop. generally she is quite sociable and extroverted, has no trouble making friends, loves being in big groups (hence very keen to go on this residential!). was never anxious as a younger child, and is still not - doesn't worry or dwell on things. has never had any issues with reading emotions, or faces, or getting sarcasm, or anything like that. i will say that she is quite a "type A" personality generally and is quite driven and ambitious and is not what some people might think of as a 'typical' girl in that she is very keen to win and be the best at things, but not in a way that has ever caused issues - the issues we are dealing with are related to her episodes of inappropriate behaviour.

it's funny you mention masking because literally the only thing that has made me wonder about ASD has been DD's inability to 'mask' the way that we all do day-to-day - like if i'm feeling down or tired, i would do my best not to take that out on my friends or family because logically it's not their problem. but when DD is in one of these phases she will sort of lose the ability to see that she shouldn't act exactly on how she feels in every single context, whether at home or outside it (although thankfully she has never been violent at school). not sure if that makes sense.

i just feel like if we got an ASD diagnosis tomorrow, my response would be, ok fine. now what about the hallucinations??

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Seasidetrains · 23/05/2022 13:43

ok i just saw your second message, i am X-posting like crazy too :)

yes i think i will apply for an EHCNA. i have asked for a meeting with the school next week to check in and will mention it to them.

this has been useful, thank you.

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AReallyUsefulEngine · 23/05/2022 14:00

school have said it has to be the GP that refers to CAMHS and just keep pushing me to go back to them

Sadly some schools incorrectly tell parents it has to be the GP that refers. Just like some GPs tell parents it has to be the school. It’s more about passing the buck rather than actual procedure.

The physical symptoms could well be related to a neurovidversity or a comorbidity of one. None of what you say necessarily rules out ASD - for example, some autistic DC are overly sociable.

Hallucinations and similar type experiences aren’t uncommon in people with autism, more common than in the population as a whole. The reasons are complex and aren’t fully understood. A starting point for reading about this is here. And here is it mentioned by a NHS service. Or there might be more than one think at play, ND people are more likely to have certain comorbid conditions. Or something else completely separate in addition to a neurodiversity.

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RaisingAgent · 23/05/2022 21:25

Can you fund a private assessment for her? If so I would recommend the Lorna Wing Centre, as they specialise in autistic girls, and also specialise in assessing where women/girls have complex MH presentations. There must be other centres/practitioners too with this specialist knowledge... could you phone Limpsfield Grange school and ask them if they know? They are a secondary school for autistic girls and I'd imagine some of their students may have co existing MH diagnoses?

Is it not possible your DD is both autistic and bi-polar (or neither)?

CAMHS sounds a disgrace. You could try finding out who the service manager is and sending in a detailed letter of complaint by recorded delivery. Request that your daughter's case is reviewed and given a second clinical opinion. Ask some very specific questions which link specific features of your daughters presentation into their threshold document (if you can find it online - you may be able to find a cached version from a few years ago by creative googling, and use some phrases or wording from this) - eg "Can you please explain why, having had x no of episodes of y symptoms /behaviour over a period of x time, your team has judged that my daughter does NOT meet the threshold criteria of zzz (their policy)?" Ie, make them explain specifically how they are claiming she doesn't meet their criteria for needing to be seen.

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AReallyUsefulEngine · 23/05/2022 21:31

As well as Lorna Wing I know GOSH and Maudsley specialise in more complex diagnoses.

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