Community paediatrician refused my daughters referral

Hi all I’m new here and don’t know what to do next. Last year I decided to ask for professional help with my daughters behaviour as I was worried and struggling with her meltdowns. She has major meltdowns over clothes, this has become more of a problem as she started school last September and has to wear a strict uniform. My gp refered us to cahms and the outcome from them has been to refer her to community paediatric as they suspect neurological or autism. So the gp referred her but it has been refused on the grounds of her being ok at school and learning inline with her Peers. My issue now is she seems to be able to contain herself at school but when she gets home she explodes and her meltdowns can last hours, I don’t know what to do anymore as she is getting worse and more angry. It’s so hard to watch and nothing I do or say helps her.

any advice would be much appreciated thank you in Advance 

  • Hi well 2 years down the line I now have a diagnosis of sensory processing and asd but I had to go private to get that.

    my advice would be read as much as you can a good book is the out of sync child, also watch your daughter watch the way she plays I’ve noticed the more I know the more I’m aware of her issues like how she controls play it’s very factual rather than make believe and very controlled.

    Also go back to the gp and state how girls are more likely to mask at school and make good eye contact. 
    if you have anymore questions feel free to message.

  • Hello I'm new on here. I could have written your first entry on thread. I got a rejection for community paeds today, for my nearly 5 yr old girl, bright, socially normal. I was looking for an OT referral for what I think is a sensory processing disorder type symptoms. 

    How did it go for you last 2 years please? It's horrible  for my daughter she is so distressed, perfect in school. 

    Kicking, screaming... Otherwise she behaves well at home. 

  • Thank you for the reply

    with regards to clothes it’s the tags, seems they hurt or irate she prefers loose clothing like dresses

  • Hi, when you read a bit on here you'll find lots of people saying the same, their child is an angel in school and then comes home and explodes. And often when they try to get help nobody believes them or it is put down to bad parenting. Maybe you can find some research article that mentions this and show that to the doctor? Experts do know about this, so they wouldn't immediately conclude that nothing can be wrong if school don't have an issue with her. Getting over the non-expert hurdle seems more of a problem.

    In the meantime, do you know what her issues are with the clothes she is supposed to wear? Maybe it's something that can be improved without wearing something totally different? 

    Regarding difficulties with social communication - many children (especially girls) can compensate for this for some time because children are expected to still having to learn a thing or two there, so if she doesn't show obvious (that is big) problems there now it doesn't mean she will not have them later when we are supposed to have become much more sophisticated. A lot of woman get diagnosed fairly late and would have been described as quiet girls in school. So I'd say if someone has no social communication difficulties at all, then they probably don't have ASD, but with a bright girl of 5 years it will be quite hard or impossible to tell that she really doesn't have that, it may just not have shown up yet because she's covering it well enough.

  • Just received a letter from community paediatrician 

    if my daughter doesn’t have difficulties with social communication, social interaction does this mean she can not be on the spectrum?

    she has problems when we are all having a conversation like at the dinner table she constantly interrupts and then get frustrated when told she has to wait her turn to talk then has a major meltdown?

  • I see, that’s a tricky situation for you. Is your daughter unusually quiet at school, because that alone could be an indicator of ASD. It’s funny because every single primary school report of mine mentioned how quiet I was, but my teachers never really explained to my mum that I was unusually quiet, to the point that I wouldn’t speak at all in some lessons. Like with your daughter, because I was well behaved and did well academically they didn’t find it concerning and just thought I was shy. I however knew early on that I was different from my peers and I absolutely feared all social situations in school.

    The best I can recommend is to try and have a conversation with your GP about this, and I would emphasise to them that just because your daughter is doing okay in school, her other difficulties shouldn’t be ignored. It also doesn’t mean in itself that she doesn’t have a diagnosable condition. Clearly CAHMS had a clinical reason to refer to community paediatric in the first place, so I would also question why this has been ignored by them in rejecting the referral.

    I hate to sound cynical, but a lot of all this comes down to money, so unless you push the issue really hard, or your child is having significant issues in school or with mental health problems, then you’re unlikely to ever get professionals to make a diagnosis. I have seen this demonstrated too many time to mention... They don’t like to diagnose because then they have to provide the support, and that costs money.

  • Hi thank you for your replies 

    my daughter is five she is quite at school and well behaved.

    the community paediatrician now wants a fact from the school which is ridiculous as she is showing now difficulty at school

    im at a loss now as it seem before they will even see her she has to have problems at school which is what I want to avoid 

  • Hi, welcome to the forum.

    I don’t have any personal experience in this area I’m afraid, so I’m not sure I’m qualified to help, but could the GP possibly refer your daughter again and explain that their reason for refusing the initial referral is unacceptable (which it is as many ASD children appear to cope well in school and high-functioning children would be expected to learn inline with their peers, and professionals should know this)? Or could your daughter be referred to a different community paediatric service?

    Do keep a record of the behaviours you are having trouble with at home, as this can be used as evidence for the need for a referral. You don’t say how old your daughter is - is she able to explain to you what is upsetting her at all or not? Does your daughter interact much at school or is she very quiet? - Often if ASD children are very quiet and well behaved in school then the teachers miss that something more is possibly going on.

  • Hi ,

    Welcome to the community! I'm a moderator on the Community, and noticed that no one as yet had replied to your post. I thought the following information may be helpful to you.

    Firstly, you may like to read our general information about autism:

    http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism.aspx

    If you were interested in finding out if your daughter is on the autism spectrum, they would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one:http://www.autism.org.uk/about/diagnosis/children.aspx

    If you are looking for a diagnosis for your daughter, it is very important that you see someone with experience of autism spectrum disorders. Details of diagnostic services can be found on our Autism Services Directory: 

    http://www.autismdirectory.org.uk/services/autism-services-directory.aspx

    You may also want to look at our section that provides advice for parents, relatives and carers of people with autism.

    http://www.autism.org.uk/living-with-autism/parents-relatives-and-carers.aspx

    It might also be useful to pass on information about autism to health professionals when seeking a diagnosis. The following page includes information for a range of health professionals: 

    http://www.autism.org.uk/Working-with/Health.aspx

    You may like to have a read of the National Autism Plan for Children to see what you are likely to expect and what you can ask during the assessment . Please scroll down to the bottom of the page and go to page 3 on summary report, page 11 for full report for the Essential Components for a complete multi agency assessment:

    http://www.autism.org.uk/about/diagnosis/children/national-plan-children.aspx

    If you would like to speak to someone about your concerns, you may like to contact our Autism Helpline team, who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

    https://www.autism.org.uk/services/helplines/main/questions.aspx

    Finally, you may like to contact our Parent to Parent service, which offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism .

    You can contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can contact the team via web form: http://www.autism.org.uk/services/community/family-support/parent-to-parent/enquiry.aspx

    Best wishes,

    Nellie-Mod