DD doesn't want diagnoses

[Anothernamechane]

I've posted this in SEN but I think it's been buried there so posting in Chat for visibility. Please be kind!

DD11 has an appointment with an Educational Psychologist tomorrow after some years trying to get a referral. I suspect ASD but it could be something else as her symptoms don't quite fit into a box. She is very sensitive about being "different", struggling socially and frightened of not being liked.

Tonight she's gotten very emotional about the appointment and says she doesn't want a diagnosis, just wants to be "normal" and have a normal high school experience. We're in Scotland so she goes to high school next year.

Does anyone have any advice on how to handle this? I know I can't force her to engage but do feel like a diagnosis would help her understand herself and access support if she needs it for exams etc. I'm also worried about her academically as she's very behind in some subjects and still counting on her fingers.

Tell her she is normal a diagnosis doesn't change anything just means that in the future should she need help she has that bit of paper that means she gets it faster

Not getting a diagnosis won't make her symptoms any different, and she doesn't have to tell anyone she doesn't want to. It's about understanding her and supporting her, not changing her.

I've said to her she is normal. It's so sad to see her disliking this part of herself when she's such a wonderful girl in every way

She might need the diagnosis in order to access educational and workplace legal protections. This is mainly why we did it for ds. He's a young adult and benefitting from it now. It's an important thing to do as you don't know how the future will play out.

Ds looked on his diagnosis as an explanation for why he struggles with some things rather than saying he's a problem.

It also opened the door for other help, such like he was then able to use a laptop in school, much to the envy of his classmates. He offered to hug them to see if they could catch ASD off him, and any complaints after that dried up.

I'd start by saying to her that if she does get a diagnosis, she does not have to disclose it if she doesn't want to.

id remind her that her diagnosis is personal.
She doesn’t have to disclose it to anyone if she doesn’t want to.
But it might help her find ways around things she finds tricky.

But overall, it doesn’t mean she isn’t going to have a different experience.

It might be worth also trying to understand what she means by a ‘normal high school experience’? Is she worried for example that a diagnosis will mean she is in a special class? Or has someone with her all the time (if she thinks of a 1-1 TA she might have seen other chikdren have at her school)?
Same discussion about what she thinks ‘being normal’ means?

My DD (a few years older than yours was) didn't want a diagnosis. I respected that but eventually she did go for it. It was very good for her to have the diagnosis and she found a lot of peace with it. I should have just told her it was happening earlier. It was very beneficial.

Well for one thing let her know she’s just going for an assessment, not a guaranteed diagnosis of anything. If they do diagnose something, it doesn’t change anything about her other than she now has more information which she can either choose to use or not.

(I am Autistic, late diagnosed, and wished I had known decades ago).

My child also received an ASD diagnosis in p7 (also Scotland). We respected their rejection of it, and while we share it with professionals including high school, they currently choose not to engage with any of the extra support they are entitled to (and would benefit from) and their classmates wouldn’t know they have a diagnosis.
I’m hoping that in due course they will feel better about it (as some posters above do) but there is nothing that means they have to have a differentiated experience at high school if determined not to.
good luck OP.

Whatever her diagnosis is, remind her she is a normal kid.
Absolutely bless her.

One of my DC refused an assessment/diagnosis, didn't want a label.

They changed their mind at 17.

We didn't pursue the ASD diagnosis. Didn't feel it was necessary to have the label. But she knows she has it.
I showed her famous celebs with ASD and ADHD and it's a normal thing in this family.
But she doesn't like others knowing and she is reassured to know she isn't the only one

DD has only just been diagnosed at 15, she mostly coped in primary but has found secondary much more of a struggle (socially and sensory wise, although has achieved well academically). I wish I had been able to get secondary school to support her better earlier on.

I don't always agree with a diagnosis. My DD had the ados and it came out as she has ASD. But as I knew the therapist who delivered the test, she gave me a breakdown.
I am a specialist in the area myself and currently don't feel the label is helpful at all. Maybe controversial, but that's our choice. We can access a diagnosis later if we need. (She has an ADHD one)
But we haven't had any help on the adhd front and have found it just takes an understanding school with a good SENCO for our daughter to thrive

We got diagnoses for my DS and it turned out to be very very essential when he dropped out of school at 14. We'd have been in a real hole if we hadn't done the leg work in advance. Having the paperwork set up meant he was able to change track to more suitable schooling at a moment's notice, which was good. You could explain to her that it's just a safety net in that sense.

Also, if it helps any, I'm diagnosed ASD. I got straight As in a Scottish secondary school and a 1st class honours degree and a PhD. Being ASD is fully awesome. It's not a diagnosis, it's a sign of quality!

Same as my son he is 12 and doesn't want a diagnosis

Op mines 13, was totally anti the idea of diagnosis.
I was warned by Ed Phyc. they'd need to sign their agreement and obviously if they don't want to engage then their is nothing the Ed Phycologist can do.
We ended up cancelling and are back at the bottom of the list. How many kids are getting kicked out of process for the same reason?

Ed psych here.
We don't generally make diagnoses (except dyslexia or learning difficulties) and that is not usually the purpose of our work. Generally we are there to work with a child and find out more about their learning strengths and areas of need, what helps, what harms, and what makes them happy. Then we work with school and parents and make a plan to help things feel better in school - could be a learning plan, a plan to help with friendship etc. Whilst we may suspect after observing and talking to the child and those around them that a child is autistic we wouldn't just make a diagnosis there and then; usually we would have to recommend that a child is referred to the relevant pathway. So the most you are likely to hear is that the EP thinks a referral to the autism pathway might be helpful.

I dont blame her-struggling is hard enough,the very term diagnosis suggests "something is wrong"

Can you try to reframe it. The EdPsyc appointment(and any further ones) Is a positive,assesment and any findings will be beneficial. Normal does not exist. Having a clearer picture of her learning style will lead to tweaking and fine tuning the teaching style.

I only got ds diagnosed as autistic because it strengthened his case to get into a special school apparently being over 5 years behind at school with chronic speech and language difficulties wasn't enough 🙄

(Very) late diagnosed autistic woman here. Struggled all the way through school and dropped out at 15. Left the education system with psychological scars and no qualifications. I did see an Ed’ psych’ at one point but their view was just expressed to my parents as ‘she will never be able to relate to people’ - untrue and damaging. I wish I’d lived in an era where it was possible for someone to explain to me why I was different, that my difference had a name and that I was a perfectly valid person. I can understand exactly why your DD just wants to fit in and doesn’t want a diagnosis, but please tell her from me she’s still going to be exactly who she is with or without one, but with one she can hopefully open the door to tailored support to help her reach her potential.

I'm interested that a number of posters say their dc wouldn't go along with the process - would they have that option for physical conditions? My dc won't take medication for adhd but I didn't really give him an option re the assessment meetings.

I would respect their choice. A diagnosis is not always helpful

I don't think a child that age has the foresight to know what might be helpful for them in the future. And waiting lists being such as they are, I wouldn't like them to lose the opportunity.

I would respect her choice and not go through with the assessment