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
  • Hi Mimi,

    That sounds awful. How frustrating for you!

    I’m afraid I can’t advise you as we haven’t sought a referral yet, but I am concerned this is the response we will get. My daughter is at school but she presents as a well-behaved high achiever with friends - definitely not classically autistic - but I’m fairly sure she’s masking, based on her behaviour at home and what she tells us about how she feels at school.

    Have you tried the NAS helplines? It sounds as though you need some expert advice. I do also wonder whether there is prejudice because you are home educating - services are so used to working with schools that they may regard parents’ evidence as inferior and almost blame you for not following the ‘normal’ route.

    Good luck to you and your daughter.

Reply
  • Hi Mimi,

    That sounds awful. How frustrating for you!

    I’m afraid I can’t advise you as we haven’t sought a referral yet, but I am concerned this is the response we will get. My daughter is at school but she presents as a well-behaved high achiever with friends - definitely not classically autistic - but I’m fairly sure she’s masking, based on her behaviour at home and what she tells us about how she feels at school.

    Have you tried the NAS helplines? It sounds as though you need some expert advice. I do also wonder whether there is prejudice because you are home educating - services are so used to working with schools that they may regard parents’ evidence as inferior and almost blame you for not following the ‘normal’ route.

    Good luck to you and your daughter.

Children
  • I get the sense that its more of an uphill struggle to get girls assessed. All the diagnostic criteria is still based on the signs in boys, and girls seem to show up slightly differently and are apparently better at masking. 

    I am worried that the referral was disregarded because she's home ed, and we'll just be dismissed as worried parents even though it was the consultant at the hospital who suggested ASD not us. I think I will try the NAS helpline though, thanks. 

    Best of luck if you seek an assessment for your daughter too