5 year old girl masking and struggling at home

Hi, My Daughter is 5 YO and has been through some trauma (family deaths and a messy divorce from me and her mother)

She's developed relatively normally (Almost above average for a lot of things)

Noticed from young age some sensory issues (Noises, textures, certain foods). Mother doesnt see these but notices them

Signs are included but not limited too, forgetting to use toilet, soling and wetting and being too embarrassed to tell, panic attacks around even moderately loud noises, fixation on things being right (spoken or positionally etc), quite ritualistic and demands control of play.

Fear of speaking to teachers/family if something is bothering her. Nervousness, generalised anxiety around the unknown.

Very possessive (would not use ear defenders to protect ears because they were not HERS).

My paternal family recognises signs, maternal doesn't.

Doctors unwilling to do much as say have to wait for school.

School are being evasive and stating that children presenting their needs more loudly/obviously are more of a priority

CAMHS service only offering parent-led cbt for trauma

I'm at my wits end and don't really know where to turn. Is there any charities i can get advice? my daughter is masking a lot of the stimming she does at home (running in circles, picking fingers, spinning, repetitive words) from school, where she tries to fit in, although after her nan died last year, the mask fell at nursery and they noticed signs, but school is unwilling to listen,

What can i do?

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    Very possessive (would not use ear defenders to protect ears because they were not HERS).


    Sounds like my son in particular, we would try to buy him new shoes but he wouldn't try the new shoes on in the shop because they weren't his, we had to little lie and say we'd already bought them and it was fine.

    It does sound like she has a lot of traits and some of which she is trying very hard to mask so as not to rock the boat but that will result in burn out later down the line if she endleslly tries to blend-in as it works about as well as trying to fit a square peg in a round hole.

    My advice is don't go through CAHMS, they are frequently too little too late, and they have an awful history of ongoing institutional parent-blame. They were terrible back in my day too and I didn't want to put my son through that trauma of waiting on and then being failed by CAHMS, so I went on a mission to bypass them entirely with my son.
    Around July I did my research and found a private service not a million miles away that was willing to accept my son through the Right to Choose scheme with the NHS, I told the GP I wanted to put my son forward for an assessment based on some key traits and wanting to line up a potential support system for the transition to secondary in a few years. We got seen for the 1st appointment in October and the 2nd happened in the first week of November and we got the result at the end of that appointment confirming esentially what I already knew to be true. That my son is autistic like me (it's hereditary). I only won't name the private (right to chose) service we used to protect the privacy of my son.

    Find a private service willing to see your daughter under the right to choose and get the GP to make the referral. 

    I might get picked up by the spam bot for posting multiple links but here we go:
    If your daughter is masking make sure the service knows you think that, and ask them to consider a childfriendly version of the Cat-Q and RAADS-R test rather than just the standard AQ50.


    Two private services that are offering right to choose assessments for kids that I can remember off the top of my head are https://www.wellbeingasd.co.uk/services/right-to-choose/  Wellbeing, and https://www.psicon.co.uk/ Psicon. And https://www.clinical-partners.co.uk/for-adults/autism Clinical partners MIGHT do it under Right to choose too but you'd have to ask them.

  • A GP can refer to a diagnostic service without the school. And the criteria for whether they should do so or not is purely medical not a question of what other services or professionals think.

    • You can always look into changing your daughters GP. 
    • if your ex spouse refuses to do this you can always make a complaint about the GP or a slightly softer option before that ask for a second opinion within the same practice.

    ultimately you don’t have a lot of levers to control the school making a referral. You’d have to tell us a bit more about why CAMHS is refusing to refer before we could say much about that. But again as mental health professionals they are only meant to take into account medical grounds.

    those are your options at seeking a diagnosis within the system. there is of course the option of seeking a private diagnosis but of course it costs a lot of money. As I understand it if you have joint custody you don’t need your ex spouses permission to take your child to be examined by a private doctor. So if you have the money to arrange a private diagnosis you can just do that.

    The diagnosis having been made the school then has to adapt to it whether they want to or not. And if they refuse to be cooperative there is the option of seeking an ECHP.

  • Hello. My grandchild of the same age showing simililar but more subtle signs as your child. 

    She has been using toilet fine since she was 2, yet now at reception she is having number 2 accidents. She has always suffered with constipation, which is mainly die to her very restricted diet of what I can only witness as literally eating beige food. 

    I myself have just had a word with teacher, explained that my son and myself both asd, and I see enough red flags, that I would like her to mark any observations she may witness, at present teacher just thinks she's very sensitive.

    However....talking to a friend in a similar situation as us this is what she did to get the ball rolling and it worked for her.

    In our local children's hospital they have a incontinence team, she rang up and im not sure if it was a gp or self referral, but once she had seen them, that led onto seeing other doctors in other departments, her son 6 now, adhd, waiting for a asd diagnostic. 

    We are looking at this route now, after being on moviecol since a baby, from stomach pains, to being backed up, it's so unfair watching the little ones suffer in silence. We're also asking out gp for her to see a dietician, she lives on fresh air, never sits still and I think she may be tad anemiac . I'm hoping to keep knocking on doors till the right one opens, best of luck.

  • Hi Max and welcome to the community! 

    Our website has a lot of useful information about diagnosis, including a guide for parents and carers, which explains how to get your child referred for an autism diagnosis.    
    You can also browse our website for lots of other advice and guidance on a wide range of information about autism, including what autism is, socialising and relationships, communication and education.  
    To find diagnostic services in your local area, you can try searching on our Autism Services Directory, which can be foundhere.  The Directory also includes listings for support and social groups for autistic people, their families and friends.
    Hope something there helps!