7 year old DD in camhs service but no referral due to school saying nothing wrong

[mumofcrazynamedkids]

Hi all,

looking fro some help with where to go next with my Daughter, she has just turned 7, I believe she has high functioning ASD, she has sensory intolerances, problems with understanding boundaries eg can be physically over familiar as well as aggressive and verbally abusive with strangers. She is behind in both reading and writing, although is verbally very articulate and intelligent. She is very easily distracted visually and aurally, and sucks her thumb/other objects a lot. She has an embarrassing slightly obsesive interest in nakedness, her own/others and particularly male! She also finds it very difficult to recognise real from make believe, for example tv adverts, where crazy things happen, she has to question me constantly about whether that really happens, and then gets very angry or frustrated when they don't. she hates magic or trcikery and doesn't understand humour - other than slapstick.

She has had lots of teacher changes, her year 1 Sen class teacher agreed she should be referred but recommended if I did it we would be seen quicker, I did, but after OT assessement for Sensory things, they then referred us to social services becasue of the Sexualised behaviour, this was all found to be ok (I never beleievd it to be anything more than sensory seeking/attention seeking, but understand they had to investigate any more sinister reasons) so eventually we got back to Camhs service, where me, my ex and the school had to complete a questionnaire, mine (primary carer) came back high up on teh ASpergers scale, my ex's came in the middle but the schools came back low, so now they say they can't refer on for more tests.

Camhs are going to do some cognitive tests which might show dyslexia but I just feel like I need to keep on, but wonder if I'm missing something, it might not be ASD but some other disorder?

I have a diagnosed ASpergers brother and I would say that my sister is likely on the spectrum too, as well as a nephew with diagnosed ADD and dyslexia, so there is a strong genetic link.

any thoughts welcomed!

I would write to CAMHS (not email, or phone, but wrire a proper letter).

In the letter you lay out all the reasons why you think they should proceed with the ASD assessment, such as:

• You're concerened that they've given too much weight to school's views and insufficient to those of yourself and her father (you may want to find out who at school completed their assessment so you can quantify just how much knowledge they have of your DD)

• you have a dx'd brother so have the condition in your family

• Your DD is experienecing difficulties at school and it's important that she receives the corect dx so the correct support can be put in place

• Reiterate all the behaviours that you listed in you post above.

etc
etc

State in the letter that, given the reasons stated about, it's reasonable to request that CAMHS to review their decision and to proceed with the ASD assessment.

I've always found that a well argued case set out in a letter does achieve the desired result, especvially when you send a copy to another Agency, such as school or OT. That way CAMHS cannot argue that they did not receive your letter and it's very likley that (just to cover their own asses) they will assess for ASD.

Schools tend to downplay a child's difficulties because they don't want ti shell out for any support that may be required. Cheaper for school just to state they have not identified any problems. Which you of course know is nonsense.

If I were you I would also initiate a request that may lead to a Statement. School won't do it but there's nothing to stop you as her parent from doing it yourself. At the moment you are dealing with several Agencies independently. The Statementing process would bring this all together. Also. your DD should be on Scjools Action Plus - right now! And should have an IEP. If she is not on Schools Action Pluis or does not have an IEP then you need to ask the SENCO to get ger act together.

I agree with PlentyofFreeTime - a letter at this stage will wipe away the bluff and bluster of people who may be following 'party lines' instead of looking at your DD.

I wanted DD2 seen by a Paed. I was told, by the GP, that without school support, they couldn't refer. I simply said 'why ever not? I have her 138 hours per week, the school has her 30 hours per week.'

She was referred.

thanks all, she has been seen by the Paediatrician, when I first saw her I was thinking it was just SPD, she at that point on talking to me and meeting DD said she thought more likely ASpergers/ADD or a mild combo of all 3. She was the one who referred to CAmhs, but warned me it would take a long time as she doesn't fit obviously enough into the DX of one.

I met with the school psychologist and also the sen and she has an IEP, but it doesn't do much, and I think as we are in an inner london school, there are an awful lot of children in the school who have obvious and more severe needs and so as she is bright and articulate and not disruptive she falls too far under their radar (although I think the teachers perception is that she is lazy, and doesn't try rather than that she really struggles with reading and writing) I may be moving away following divorce once our house is sold and then we'll be moving to smaller school and camhs have already said they will refer to the camhs service there, so I wonder if I should wait til that happens, if that all takes another year, am I letting her down by not pushing more now? They have already told me that even if she met the criteria for more testing the waiting list is over a year.

I'm most concerned about her behaviour outside school, she manages to control herself in school and so they don't really see it, but how she is with people outside of school is what is so difficult, that and her massive swings of emotions, usually resulting in her pinching or hitting her brother, or screaming really loudly or sobbing like someones pucnhed her when she's just bumped into a chair!

she shouts and hisses at people who talk to her, tells them to go away and kicks out at them, but equally if she initiates it, she will go up to strangers, sing at them or start chatting in an overfamiliar way, sometimes take their hands and try and show them things, it was all cute when she was 3, but now she;s 7, it's harder to explain to people, particularly without a dx, I feel guilty that I want a Dx in some ways to help me explain her behaviour to other people, but also just so I can know that the ways I handle and manage her are the best ways for her long term.

one psychologist said that I should stop explaining everything to her, that she wouldn't get explanations from other people she same in to contact with (for example at her office my dd wanted to lie on the floor to draw her picture, the psych asked her to sit at the table, my dd refused and I said "because you might get the pens on the carpet" the psysch pulled me on adding information when she should just obey the instruction, but I know my DD wants to know 'why' to everything.)

i feel if I had a dx I would have more access to specific advice about what i can do to help, rather than just working instinctively, but realistically in the dark!

sorry for long rambling post, just feel a bit alone with it all really.

Plentyoffreetime and Lougle have said it already. You do sound very alone in this, you need her assessing, not for your own selfish reasons but in order for everyone to see the context and start giving appropriate support to her. This needs to be done now, I would not wait until the move. The Psych who said 'stop explaining things to your dd' is talking as though your dd is a naughty toddler when in fact she is seeking explanations to manage her anxiety. So....... step 1) would be: ignore this well-meaning but unhelpful advice, and step 2) write a letter as per above and accept nothing less than a referral. You are the Lead Professional here (remember the 138/30 rule) write a letter that sounds as though it is coming from a Lead Professional. Keep coming back here, ramble away, and good luck xxxxx

I have a 2 hour train journey tomorrow and will be writing a letter, many thanks for your support and thoughts. I also think starting a diary is a good idea, I always think I'll remember things, but then forget when I am in front of the proffessionals.

and remember video

I agree with Hothead , pls take a look at PDA , and then take lots of video and keep a dairy of most days for 3 months.

Hi mum, I have a Dd who is 10 it took us 3.5 yrs to get her diagnosed because the school couldnt or wouldnt see any of her difficulties. She learned very quickly in reception how to make herself invisible and just get through the day, this had a huge impact on her behaviour at home and her mental health. It is really common for girls with Asd to be able to hide their difficulties at school, leading to girls being under diagnosed. Some proffs find it difficult to unpick the Asd symptoms in girls as they are often subtle and well disguised.

I moved my Dd to another school in the end and within one term they had helped me to get her diagnosed, they saw everything I was seeing.

I agree with keeping a diary and also making some notes, look at the critieria for diagnosis and give some real life examples of how your Dd fits the criteria.

Good luck