Daughter doesn't believe ASD diagnosis

[JustGotToKeepOnKeepingOn]

I had a call from a clinical psychologist to tell me that DD is autistic. To say it was a shock to me is an understatement and it took me several days to tell her.

I broke the news to her as sensitively as I could. She was distraught. Can't believe it. Can't believe that a diagnosis could possibly have been made via an online assessment (NHS paid for a private consultation in an attempt to cut waiting times, we'd been waiting for 2 years to get help with DDs social anxiety).

I don't really know what to do. She's adamant the diagnosis is wrong and is refusing any of my attempts to get her any support.

Does anyone else have experience of their child not accepting a diagnosis? And what did you do?

How old is your DD?

What led to her being referred in the first place? Just wondering as you seem so shocked at the diagnosis but surely she's being showing significant traits for years to even get assessed?

Hi OP. Yes my young adult DD was assessed and it came back she was ASD. She disagreed and says very little about it now. How old is your daughter?
How do you feel about the diagnosis?
I hope you both are ok, it’s a lot to take in I know.

My DD is 14. She struggles with anxiety. We had both assumed she had social anxiety and that was the diagnosis we expected.

We'd been waiting over 2 years for a diagnosis when the NHS team in my area called and offered a private appointment to clear people from the list, which we accepted. The only drawback of the private appointment was that it is all done online.

DD is my only child so I have no one to compare her behaviour to. She has always been very well behaved but shy. No problems academically or issues at school. She has always been a gentle, quiet child who doesn't like change, so was always part of the nurture group throughout primary school to help her confidence.

As she has grown older her shyness turned more into anxiety. During lockdown she was happy to stay at home but when life returned to normal she still wanted to stay at home. This has now turned into always staying at home. That's when I knew something wasn't right but I wasn't expecting the autism diagnosis. And neither was she.

After the initial shock I'm ok with the diagnosis. For me, it's good to know and I see it as a way to understand her behaviour and help her with her anxiety. For her, she's upset, in denial and concerned that everyone will see her differently now, so it's actually making her anxiety worse.

I'd naively thought it would be a light bulb moment for her but it's been the complete opposite. She doesn't want me to tell anyone and has no plans to tell her friends.

I obviously need to inform the school - who knew she was waiting for an assessment. But I'm at a loss at how to support her when she's in complete denial.

Her biggest 'push back' to the diagnosis is that as it was done online she doesn't think it was done properly.

She wants to know how 20 minutes with a psychologist via a Zoom call can possibly give her a diagnosis.

I must admit, I was surprised how short her interview was but mine was 3 hours, plus feedback from the school... it was all done correctly.

The hardest part is that we've now just been left to find our own support. We've been given a few groups to get in touch with. But going to anything like that is a huge ask for an anxious child, and an anxious child in denial of the diagnosis is virtually impossible.

Has anyone got any advice or links to anything that offers 1-1 support?

DS has recently had a zoom assessment for ADHD. Absolutely no surprise that he has it. We had to submit questionnaires from both ourselves and from him. His was as an adult so school didn't need to submit anything.

It was pretty obvious that the Dr doing the diagnostic test had read everything before the call as he asked about a few things.

I don't have any issues with how the assessment was done. It was all done thoroughly. Online tests for her, interview with me, questionnaire completed by school. Finally an interview with her. All she sees is the 20 minute interview with her as 'too short' so 'can't be right'.

Difficult isn't it when her way of thinking demonstrates her ASD!

If she is distraught, has SENCO talked to her at school? Is she able to articulate why she is so upset beyond her thinking that the assessment wasn't carried out properly? We often have discussions where we talk about ADHD & ASD not being wrong, just different.

As it's an hereditary condition, does she have any positive role models in the family that could talk to her?

I have a good family friend who has offered to talk to her. She is having a think about it! Yes, now I know she's autistic a lot if things are falling into place for me. And I feel terrible/stupid/naive for not noticing before.

I haven't spoke t to school yet. This has all happened over half term. There is a teacher at school who she likes and trusts so I'll start there first.

I would definitely inform school and make it plain that she doesn't accept the diagnosis but does need the support.

Has she got an ECHP?

She doesn't have an EHCP as we've literally only just had the diagnosis. I confess to not knowing what an EHCP is. I've just done a quick Google and don't think she falls onto the any of the categories for receiving an EHCP. She is performing well academically. I'll speak to the school and see what they think/want to do/recommend.