How to insist on ASD diagnosis?

Hello all, just need some help please. My daughter is 9yo undiagnosed. She's always struggled with severe anxiety since she was a baby and she's got Selective Mutism (also undiagnosed). Last year she had episodes of Trichotillomania (hair pulling) and the GP, school nurse and a play therapist got involved. She was also referred to CAMHS. We've had 1 face-to-face session and 2 CBT on the phone which was a disaster as she cried the whole time. Then with Covid ALL her therapies were cancelled. Now back to school her anxiety returned full force and with no support at all. She missed 2 days due to panic attack and meltdowns. Last year the GP was the first to suggest autism. The school is not convinced that she needs to be assessed for autism because she's doing well in all academic areas (of course they don't see the meltdowns after school). We honestly think that CAMHS was not helping because they insist in CBT when she's got selective mutism and can't answer back and that distress her. So, this is where I am now: I am convinced she needs to be assessed for autism. But I don't know how or where to start. CAMHS already said they would only focus on her anxiety however they are yet to resume her treatment and seems to have forgotten about her case. School seems to be in denial of her needs. So I sound like an overprotective parent trying to label my daughter. Without those two backing me up and without means to go private I don't know how can I get her tested? Should I try the GP again and ask specifically for an autism assessment that wouldn't involve CAMHS? Is it possible? Any other professional could help? Or should I try to go SENCo route? Thank you in advance.

  • Hi Marcia, I'm new here but I've experienced a very similar story to yours.  I've been saying for many years about my eldest's behaviour.  I don't have much advice because I got lucky that the youth worker noticed & started pushing the school. All that said though, We're now at final year of senior school & only now being diagnosed!  First & foremost, I'd say, don't give in. Keep pestering, keep pointing things out to school, and keep a diary at home so you have evidence. 

    In my eldest's school the SENCO / ALNCO will not get involved until the school involve them and they are separate from CAMHS.  Look up help in your area for young people (ie. a youth service - sometimes they're run by councils, sometimes referral is through school, other times it's a Charity ).  I know it's exhausting trying toget them to listen but keep at it - You'll get there eventually.

    All the best xx

    L xx

  • Hi Leah, thank you so much for your input. I've started writing a long list of things we've notice she's been struggling with since she was a baby. Next time I speak to a professional I want to be prepared with some evidence. I really need her to have some support before she starts secondary school which would be a major change in her life. I'll look into other youth services that could help too. Thank you for the suggestions. xxMarcia

  • Hi, we had a similar situation with my daughter who is now 11 and still undiagnosed. We had always suspected she was on the spectrum but as she seemed happy and did well at school and had a couple of friends we didn’t push for anything. However when aged 9 things changed and she was unable to cope with most areas of life. Her anxiety was incredibly high, she stopped eating and going out, bathing was torture for her and she stopped attending school. 
    school wouldn’t accept autism as she was always ‘fine’ in school and showed none of the obvious traits such as stimming and avoiding eye contact and she appears quite social on the surface. What we were seeing at home though was massively different. She would come home from school distressed because of the noise in the classroom and the dinner hall. Upset over constant misunderstandings with friends. More so than I ever noticed with my eldest child. She would feel disappointed in herself because she’d work wasn’t perfect. She had always experienced meltdowns after school but these became more frequent and intense. She would become violent in any situation that caused her stress. Her poor sleep became even worse and she spent 6 months sleeping with me or she wouldn’t sleep at all. 
    prior to the most recent escalation we had received support for behaviour and our parenting was deemed the culprit for her outbursts. Nothing we tried worked though and I kept on at school. Eventually the senco requested a visit from the educational psychologist. We had just been seen by camhs and they were looking at her anxiety but wouldn’t accept possible autism. After a terrible few months of her being so unhappy and us being threatened with fines for her not attending school the Ed Psych agreed to refer for autism screening. Unfortunately we were on the wrong camhs pathway so had to be switched over. The Ed psych also referred to the ASET team and asked for their involvement. They will work with children even if no diagnosis is in place. 
    then lockdown hit! We are part way through the process now and our camhs worker has been amazing. She reassured me that what we were experiencing with my daughter was common for girls as they can present differently. 
    so long story short I would recommend contacting school senco and requesting education psychology involvement and ASET team. I hope you get sorted