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Newly diagnosed child

Liza

Hi there. After receiving several assessments over the past two years, the paediatician who met my 3 1/2 year old daughter last week gave his evaluation of her as having "high functioning autism". His attitude seemed to be that this meant that she no longer required help from the NHS, nor did we need any further advice because she's a girl and she will just learn from the other girls how to behave once she went to school. We were then discharged and told to come back in a year's time if there were further issues.

Having been a girl at school myself I know how unforgiving children are of difference and how important it is for girls in particular to have highly developed social skills. I am quite astounded that this is the level of support I am to expect. My daughter has some quite serious sensory issues and struggles on a daily basis. I also find it quite hard to cope and during this process have also realised that I am on the spectrum, which has hardly helped me with the requisite parenting or networking skills which would help me through this. Her communication skills are poor, despite having quite good language skills (vocabulary and to a lesser extent syntax). I think this is the reason we are not receiving any help. She is supposed to start school in September but can't even use the toilet yet and is completely resistant to the idea. 

I have been looking for courses I can go on to help me help her to transition to school (and also general advice for how I can help her with her sensory issues and meet her other needs) but I can't seem to find anything in the South London area, where we live. I have read extensively how early intervention can have a massive impact and I feel like I should already have been doing something from when I originally noticed that there was an issue but I don't know what or who to turn to. 

I teach in the tertiary sector and intend to do a Master's degree in special education or related studies from September so if anyone has any advice on a course they could recommend, I would be really grateful. 

  • Hi Liza,

     

    You may find it useful to familiarise yourself with the NICE (National Institute for Health and Clinical Excellence) guidelines that focus on improving recognition, referral and diagnosis of children and young people with autism in England and Wales, these best practice guidelines are useful to show you what you should be expecting from an NHS diagnostic service:  http://www.nice.org.uk/cg128 

    Within the guidelines there’s a section on what you can expect post diagnosis, which might be helpful for you if you choose to go back to your doctor to ask for more support.

     

    For local support groups, you can search for services in your area on the Autism Services Directory:

    www.autismdirectory.org.uk/directory.aspx

    This includes services such as: support groups, social groups, advocacy, befriending, residential settings, outreach, respite.

     

    If you are already thinking about schools and Education and Health Care Plans (EHCPs), you can contact our Education Rights Service. They're available to offer you confidential information and advice, help you explore your options so that you can make informal decisions about your child's school education, and explain education law and your rights.

     

    To use our Education Rights Service, you'll need leave a message on our answering service and we will call you back, which you can do on by telephone (0808 800 4102 and press 1 for our Education Advice Line), by emailing your details to: educationrights@nas.org.uk or by filling in our online enquiry form: http://bit.ly/1P3j0Xr.

     

    Please include your name, number, brief details of why you are contacting us and the best times to call you back. We aim to reply within 10 working days.

     

    Please bare in mind currently we're experiencing some technical difficulties to our telephone system, so while we're not currently able to receive or respond by phone, you're still able to contact us by email or form, and our telephone system will be running again momentarily.

     

    I hope some of these links are helpful, if you have any other questions, please let us know and a moderator or a member of the community will try to help.

     

    Kind regards,

     

     

    Heather - Mod