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support for children waiting for a diagnosis

LMEM
  1. I am autistic with aspergers and when i got support it wasnt very supportive they took me out of classes to show me flashcards of emotions which i already knew and poked me in class when i stopped writing to think and talked to me like i was 2 despite having the intelligence of a 16+ year old at 8 years old according to their tests and their singling me out all the time got me extremely bullied I never got help for my anxiety or disorganisation or navigating social situations etc I just had to figure that out the hard way. So I ended up hating my family for getting me diagnosed and vowed to myself I wouldnt do the same for my child. Now that I'm older I have a child of my own she has both my aspergers and her dads adhd and its like having a clingy toddler I'm raising my child alone and she can get so violent like her dad which is why i left him. I wanted to try to raise her without support unless I knew i couldnt handle it and when i knew I couldnt handle it i submitted the form 6 months ago to get her diagnosed but I was told its a 3 year waiting list. I started pay 35 pounds a week for therapy sessions which my child loves and theyre helping. I've just been told my apprenticeships coming to an end and theyre not keeping me on. I cannot afford to spare 35 pounds a week on pure benefit money until i find another monday to friday job (need my weekends off as a single parent to a severely autistic child i can't miss the only time we spend together- so its making it hard to find work) and want to know if theres any financial help I can get toward it and if so how to go about it.

  • In respect of your own support, you might find it helpful to check out Autistic Parents UK, whose resources include peer support via both Facebook and Discord, facilitated groups, and one-on-one support:

    "Autistic Parents UK CIO was founded in 2020 by Autistic parents seeking connection and support, born from a deep understanding of the unique challenges Autistic individuals face while navigating parenthood. We are the only national, Autistic-led charity offering essential support services, resources, education and a thriving community for Autistic parents."

    Facebook - Autistic Parents UK - Peer Support Group

    Autistic Parents UK

    And one final suggestion: you might like to consider seeking emotional support from other parents who are, or who have been, in a similar situation via the NAS's parent-to-parent helpline. You can request a call here:

    NAS - Parent to Parent Emotional Support Helpline

  • Hi and welcome to the community.

    I'm sorry to hear of your difficult situation.

    LMEM said:
    i submitted the form 6 months ago to get her diagnosed but I was told its a 3 year waiting list.

    If you live in England, then you might like to ask your GP about re-referring your daughter for assessment, but this time using the Right to Choose pathway (RTC), which you are entitled to use instead if you wish.

    In England (only), this enables access to certain, approved, private autism assessment providers who typically have much shorter waiting lists than the NHS, but with the referral and assessment still fully funded by the NHS. 

    I was on an NHS waiting list for two years before I learned about RTC and switched to it (on the recommendation of an NHS psychiatrist). My assessment and diagnosis then followed around just four months later.

    Some examples of RTC providers are listed here, along with some further explanation.

    More information:

    NAS - How to request an autism assessment

    In respect of accessing support - including financial support - in the meantime, you might also find the information here helpful:

    NAS - What can I do while waiting for an autism assessment? > Can I get support while waiting to be assessed?

    NAS - Distressed behaviour

    NAS - Financial help, money and benefits

  • For further information my child is 10 not sure if that helps. She will be in high school by the time she gets a diagnosis. The SEN teacher at her primary school agrees with me that she has ADHD she struggles to sit still in assemblies and weren't sure if she would grow out of it but even when I was in the doctors office requesting an assessment he said he observed that she hadn't stopped moving and fidgeting the entire time so had multiple professionals agree that she needs help but I just can't get it