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Advice what to do?

NAS82968

Hi, this is my first post! I’m not sure what to do and need some direction. I asked for an NHS referral for my child at the time to be assessed for autism. Basically, got the referral but did the testing on FaceTime due to lockdown. They told me she isn’t autistic as she’s able to engage in conversation and has eye contact ( even though she has vi). At the time I did say I disagree with there decision but felt helpless and didn’t know what to do. Obviously, time has gone on and my child that’s now an adult functioning has not improving. What are my next steps? It’s not about funding in education anymore, it’s about helping my daughter to be able to function. She can’t cope with changes, new environments, highly anxious, suffers from depression and so the list goes on. If anyone can advise me it would be very much appreciated. Thank you. 

  • NAS82968 said:
    she isn’t autistic as she’s able to engage in conversation and has eye contact

    Denying a diagnosis on simple yes/no traits is very poor clinical practice. It takes no account of if the activity causes discomfort, or if it is being done to please other people. Autistic children who are bright will try to please others and may do so through using behaviours that cause them a certain amount of discomfort. 

  • I would go back to your GP (if your daughter is ok with this) and discuss your concerns. See what they say. 

  • I have recently been given an ASD diagnosis, in my 40s. However, i was first "told" i was autistic, about 6 ywars ago, out of the blue. I waited for my assessment for nearly 2 years, and after what I considered a unqualified assessment, was deemed to not meet the criteria. Fast forward a few years,  and other MH issues, in a different catchment area, and I was referred back for another assessment. And lo and behold, done correctly by qualified staff, and I have been diagnosed.

    So, as others say, have a think abiut benefit for you  family and mostly your child if the diagnosis route is right way to go. If so, push to get another referral.... I hope this helps and things work out well. (My son is also autistic, and knowing that has helped in my opinion, not directly for his outlook, but moreso those around him, plus school and now college etc)

  • in reply to Kevin m

    Thank you so much for sharing the specific information!

    @slope game

  • You can ask for a second opinion, or look at getting assessed privately. If this is your choice, then let the new assessor have her report, and ensure that you correct and add into to it to show why you don’t agree and what issue remain.

    Failing that, you could try and source some help for her, perhaps with the autisticandadhd.org team or similar. Or she could try intensive CBT to help with her anxiety and how to manage it, and to start to motivate herself to improve the symptoms of depression. It’s hard, because she needs to be ready to make these changes, and really want it. Otherwise, results will be fruitless.