Any down sides to getting diagnosed?

[TheMidnightBell]

My DD is 13 and we’ve suspected she may be on the autistic spectrum for a few years now but have been hesitating about getting her assessed. It’s been quite hard to get my OH on board with considering an assessment but he’s coming round to the idea. Are there any down sides to getting a diagnosis that I should consider before we go ahead with the assessment? My OH is worried about putting a label on her & that it could stigmatise her & encourage her to put limits on what she can/will try to do. I have concerns about this too but think it would help her to understand her difficulties better & allow small accommodations to be made for her where necessary. Are there any other possible negative consequences to getting a diagnosis that I haven’t thought of? She does well academically but has lots of classic symptoms. She struggles a lot socially; has lots of sensory issues; collects random things; fixates on special interests etc. we’ve talked to her about it & she is happy to go ahead with an assessment. Is there anything else to consider or should we just go ahead?

Personally, I think you should go ahead. Diagnosis (where relevant) is important for being able to understand yourself.

Hi - I had to re-read your message and name several times to make sure it wasnt me who'd written it a few months ago and had forgotten about it. Only your last sentence is diametrically opposed to us: I cannot bring myself to putting the subject on the table with her as I know she will take it as a stigma, a judgement, a rejection, if I even suggest looking into it.

Where did you get to?

FWIW, we hesitated for ~4 years - if she is autistic, she masks really well. But the occasional tantrums, the very deep need to recharge and chill for hours after school, the fear of over scheduling etc, alexythemia (inability to discuss/ identify emotions), extreme sensitivity to noise and smells, demand avoidance (and utter compliance at school)... it all seems to fit, including huge anxiety driven angry explosions when faced with new, sudden places to visit or activities (unless chosen by her)

But now that we've started the process, unbeknownst to her for now (as I want professionals to help us frame the subject in a way that enrolls her rather than alienates her) I feel like it's the right thing to do, almost like offering her a key that she can open the door with, when she's ready.

School have been very good. They indeed had zero suspicion, but did an in depth survey for subtle markers of masked autism and nearly all teachers found elements that match the profile. As a result they will take her out of one of her regular lessons where she does very little because she's already bilingual in that language and give her 1:1s to see how they can customise learning support to her as she's also part of a "gifted" program. That way the intervention is under a "positive label" rather than "deficit - you need to be fixed" kind of positioning - I realise autism is NOT a deficit, but I fear my daughter would see it that way if we approached it from that angle.

I have a meeting with the GP (w/o daughter) next week to also discuss next step in the diagnosis route. At the end of the day, I want her to learn the coping strategies and emotional regulation, rather than the diagnostic itsself. And I want to learn to parent her better if indeed she has autism.

If you have an update of where you're (both) at @TheMidnightBell I'd find a lot of value in you sharing your experience.

I’m picking up this thread to report back. We decided to have our daughter (now 14) assessed and this week we received the outcome. She has been diagnosed with both autism and inattentive ADHD. The assessment process was incredibly thorough and very helpful in itself. We all feel positive about the outcome. It’s relief to finally have our instincts confirmed. No regrets at all about having the assessment done. I only wish we’d done it sooner.

Can I ask how did you get your daughter assessed, was it via the school's referrel, GP or did you go privately? I have wondered for a long time if my daughter is on the autism spectrum. She was coping well until starting secondary school but is really struggling now and I wonder if a diagnosis would help her if she is indeed on the spectrum, but I don't know where to start with the process.