Daughters Referral Denied

My five year old daughters referral to the Community Paediatrics Team for an ASD assessment has just been denied on the grounds that all evidence given is "just behavioural" and they don't deal with children with behavioural problems. 

She was referred by the hospital paediatric consultant who we've been seeing for several years because of her eating.

She is an extremely picky eater, who has found it hard to make friends and gets extremely anxious. She has difficulty coping in any new situation, resists trying new things, and gets extremely distressed if there is any variation in her routines or rituals. She is polite but is also often very blunt and seems incapable of telling when something is inappropriate to say (even when we've tried to explain this - though to be fair, I am awaiting my own ASD assessment, so I'm probably not the best guide). She is also very literal and doesn't hold eye contact often.

Though I understand that all the above does only reference her behaviours, I don't understand what they are looking for. I have looked at the signs of autism in children page on the NHS website, as well as the criteria set out in the DSM-5 and I can't see anything there that isn't talking about behaviours. Am I missing something? Have I misunderstood? Because I don't understand what they require to accept a referral. The only thing I have noticed is they mention that referral usually include a schools SEND team or a FACT Plus profile, which are school related things and which, since my daughter is home educated, she does not have. Could it be this?

Can anyone explain, I'm confused.

Thanks in advance.

Parents
  • I'm sorry to hear this Mimi. Going on my own experience I would urge you to seek out a private diagnosis for your daughter. It can take many years & there are many hurdles to jump before getting an NHS dx, particularly for girls.

    If I could have my time again I'd have got both my girls assessed privately at 6 & 8 when I initially flagged up a concern, they wouldn't have been failed so badly (particularly my eldest who was 18 at dx) if I had. Hindsight is a wonderful thing. 

  • This is helpful, Trei. We are lucky enough to have the financial security to be able to consider a private assessment - it's not cheap! Does anyone have any recommendations? We definitely want someone with experience and expertise in assessing girls and would be willing to travel for the right service. 

    Anyone have knowledge of different diagnostic tools? Is DISCO preferable to ADI?

    Thanks.

Reply
  • This is helpful, Trei. We are lucky enough to have the financial security to be able to consider a private assessment - it's not cheap! Does anyone have any recommendations? We definitely want someone with experience and expertise in assessing girls and would be willing to travel for the right service. 

    Anyone have knowledge of different diagnostic tools? Is DISCO preferable to ADI?

    Thanks.

Children
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