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Support with the diagnosis pathway

sherrieosherrieo Member Posts: 4 Listener
edited August 6 in Parents and carers
Hi. My name is Sherrie. I'm here for advice and a sense of comeradery. I have had lots of training and experience with children with ASD, EBD and sensory processing disorders. Ever since my little girl was 1 I have been able to see certain traits that aren't Neuro typical. Due to my training and ability to accommodate her needs she has gone undiagnosed. She is now nearly 7 and has become very adept at masking her difficulties. She is home educated due to finding school so overwhelming, the school used to send her home on days when senior staff weren't in so I took her education into my own hands which isn't a problem as I work in primary education. I'm now finding it hard to navigate the pathway to a diagnosis as there aren't any professionals that know her well enough to support or give evidence of the struggles she has. I know it's going to be a long road so any advice or just conversation with parents in similar circumstances would be lovely. Thanks for reading.

Replies

  • steve51steve51 Community champion Posts: 6,982 Disability Gamechanger
    Hi @sherrieo

    Good Afternoon  & Welcome to our online community.

    I am one of the CommunityChampion’s here at Scope. Please please let me 


    We have got some good info for you below.

    https://www.scope.org.uk/services/

    https://www.scope.org.uk/family-look services/family-activities-leeds/parents-carers/
    https

    Ihttps://www.scope.org.uk/family-services/family-activities-leeds/parents-carers/

    I do hope that is okay for you???!

    If you require any further help please let me know.

    @steve51






  • janer1967janer1967 Community champion Posts: 2,161 Disability Gamechanger
    Hi and welcome to the community great you have joined us

    I suggest you take a look at our parents and carers section or the parents of disabled children to see if  there is any suitable advice on there

    I look forward to seeing you around and good luck getting a diagoisis or your daughter
  • chiariedschiarieds Community champion Posts: 2,954 Disability Gamechanger
    Hi @sherrieo -& welcome to the community. It's marvellous to read how much you have been able to help your daughter due to your background. I'm hoping you have now been able to find some support when you need it to get her assessed. Is your GP able to help? You've probably already thought about it, but would making notes of all the things you've noticed, or keeping a diary that you could later show them help?
    Have you considered the National Autistic Society?  https://www.autism.org.uk/
    Please let us know how you get on, & do chat here any time. My best wishes. :)


  • Chloe_ScopeChloe_Scope Administrator Posts: 9,457 Scope community team
    Welcome to the community @sherrieo, how are you doing?
    Community Partner
    Scope
  • KarenO_ScopeKarenO_Scope Member Posts: 21 Courageous
    Hello @sherrieo and welcome to the forum. The pathway for a diagnosis may be different in each local authority. I work for Family Services in Leeds and we generally find children under 5 are picked up by the Health Visitor and referred on to a paediatrician and child development centre, as they look at a great range of health conditions and disabilities.

    For a child or young person over 5 years I would make an appointment with your GP, especially as your daughter is home-educated and she will not have been seen by any other professionals. When you raise your concerns with the GP, it will be helpful to give examples and any observations you have made. The GP will then be able to refer you on to CAMHS - Child and Adolescent Mental Health Services, and they generally assess and diagnose children over 5 years old. In some areas waiting lists for CAMHS can be long, in Leeds they now also use an electronic system called Mindmate, where families can access support and information.

    It may be useful to look on your local authority website under Local Offer for information about services for disabled children or look on your local NHS community healthcare web pages for direct information about CAMHS referrals in your local authority. Hopefully though your GP will have all the information you need about pathways and support.

    I hope you find the information you need and access some support for your daughter.
  • sherrieosherrieo Member Posts: 4 Listener
    Hi everyone. Thank you for your warm welcomes and support. It's been quite the mine field. A few years ago a health visitor filled out a CAF form at my request but made a complete mess of it so I just said forget it, I can do what needs to be done. Then at the beginning of this year whilst my daughter was still enrolled in school the school filled out an early help assessment form. I was told I had to do the Webster Stratton course as nobody will take it further until I've completed that. Due to covid I was put on the triple p online course and have 3 weeks of the embedding period left. I've been reluctant to go to the GP as my little girl has an acute aversion to first aid, Medicine and medical professionals. This is so extreme that she will hide injuries and illness to avoid treatment from anyone other than me. I've completed a paediatric first aid certificate because of this. I feel like I'm stuck between a rock and a hard place because I don't want to cause unnecessary distress but I'm running out of options. I'm also considering asking the doctor to look into the possibility of my daughter having kernicterus, as she had severe, prolonged neonatal jaundice, and I know that fairly recent studies have shown a link between kernicterus and autism diagnosis. If anyone knows a little more about this I'd love some more information. Sorry, I tend to go on a bit but it's so hard to encapsulate everything about a person in a few sentences. 
    Thank you all again for your kind comments
  • steve51steve51 Community champion Posts: 6,982 Disability Gamechanger
    Hi @sherrieo

    Good Morning I do hope that you have had a good start with the day????

    Please please don’t worry about the long post as that is what we are all here for.

    Here is some info below for you.

    https://www.healthline.com/health/kernicterus

    Please let me know if you have any further questions??


  • KarenO_ScopeKarenO_Scope Member Posts: 21 Courageous
    Hello @sherrieo. That's such a shame the CAF process didn't happen as it should. We use the updated version Early Help in Leeds and it can be so helpful as it brings the Team Around the Child. The only thing I will add is that currently due to Covid you may find the process with the GP easier as many are offering a triage system over the phone or online. This would hopefully make things a bit easier as you would not need to take your daughter to the surgery and hopefully that way your GP can look at the best pathway for support from everything you are describing. Hope you get the help and support you need.
  • sherrieosherrieo Member Posts: 4 Listener
    Thanks for the advice, I really appreciate it. I was thinking the same thing about a phone consultation with the GP. I have been in touch with my LA early help team to chase up the EHA the school started before my little one started being home schooled. Thankfully the early help team are supporting me and referring my little one to the neurodevelopment pathway. Fingers crossed we will start getting somewhere now. It will be worth it's weight in gold just to be told I'm not losing my mind so that I can continue parenting her in the way the suits her needs. As a parent I think it's normal to have those niggling doubts but professional confirmation will just put my mind at ease.
    Thank you all for taking the time to post xx
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