To consider autism assessment now?

[Idontthinkyourereadyforthisjelly]

My DD is 16. Every time I read a post about a DD being perfect at school but flipping out and having horrendous regular meltdowns at home (kicking doors, wild, inconsolable) and 100 posts recommending autism assessment my heart sinks - because that was my DD at that age and was from about 3 to 11. Because she was perfect at school, autism didn’t seem to be on anyone’s radar, including mine. I repeatedly asked the school for help, and the doctor, but was always told that because she was great at school and was sociable it was essentially a parenting issue (FWIW I have another one who - whether despite or because of her sister, is completely different) Eventually in year 6 she was referred for counselling and had 6 sessions which were useless, she resented going and they stopped as soon as she started engaging (and I was just told she knows what she’s doing). Roll on the years and as her brain has developed she has developed strategies to deal with (or maybe just internalise) her feelings but she is a very unhappy girl. She is still acing school and has friends and passions and hobbies and is very loving but I know she struggles, there is a lot of sobbing, she won’t talk to me just says she feels sad all the time. She struggles with general conversation (misreading intent) and finds being with friends / people overwhelming at times

For those of you who have had autism assessment late, would you recommend it? My daughter doesn’t need an EHCP and her self esteem is through the floor and I worry the impact it will have on her. We talk a lot about neurodiversity at the dinner table, and discuss how we all see the world through different eyes, there is autism in the wider family and I have recently found a lot of solace in recognising a lot of the ‘flaws’ I’ve got that I’ve beaten myself up about over the years are associated with what I’d call an adhd like brain (no disorder, I function - albeit with frustrations, but tick all the boxes on the recognised screening tools) An assessment would be sought for her benefit rather than mine. Is now the right time (rather than in the future)? I’m wary of even bringing it up directly with her for causing her more pain. It’s GCSE year too and the pressure is huge. But I can’t help feel she might like herself a bit more and understand her struggles and frustrations if neurodiversity is identified. But maybe she needs to be a bit older to understand autism to be embraced rather than something else to feel upset about?

AIBU - to seek assessment in GCSE year?

Thanks for making it to the end!

I’m taking my 13 year old this week and there was another thread the other day saying it’s never too late to seek support etc. so perhaps just go for it, is she in Supoort?

What I will say is the wait here on the NHS is currently just over 2 years, so I have opted to go private.

My son was diagnosed at 14 (he self diagnosed and then we had it properly confirmed).

I would absolutely, 100% recommend it. It doesn't suddenly mean people will rush to your aid but it gives you a starting point for your child understanding themselves and for you understanding them. And, building from that, what support may help, what's reasonable, what isn't, what may work, what won't change.

I honestly shudder to think what might have happened to ds if he hadn't sought diagnosis. I only wish we had realised years earlier - he managed and masked for a long time and may have continued doing so for years more, but the wheels would have come off eventually.

Just to add, with the NHS as it is we would most likely seek a private assessment if DD wanted this.

DD14 finds it useful to understand that she has ADHD and ASD.

She is also great at school but meltdown's at home because masking is exhausting and she can't control very well her outbursts.

I'd go for it.

We went private too BTW.

My DH has just been diagnosed aged 45! So no, it's never too late.

Our youngest DD was diagnosed earlier this year at 16. She'd already worked with CAHMS pre diagnosis for support with her anxiety but days she feels diagnosis has finally helped her understand why she thinks/feels the way she does.
Her school were really good and already had any supports she needed in place pre diagnosis but she'll (hopefully) be heading to university next year and the diagnosis may help her to access additional supports there.

I'd add that my BiL (successful in business, married, 2 kids) said that being diagnosed at 45 was one of the best things that ever happened to him. I think struggling for so many years knowing you are different but not why must be really hard, even if outwardly everything appears to be going fine.

You sound like a lovely parent 🌺

It doesn't seem from your OP that you've asked dd if she would like to be assessed? If you have the money for a private assessment, you could research recommended centres in your area and see if they are accepting referrals and price etc. Then you can broach the subject with her, maybe on a walk or drive where you can avoid eye contact (most teens would find this helpful). To say you want to help her not feel sad all the time, and this would mean that experts might be able suggest things you can do as a family to help that.

Others might have suggestions of books you could leave on her bed - maybe post in SEN chat or SEN parenting?

To all those seeking private assessments (and I don't blame you), just check that you will be able to access NHS post diagnostic support afterwards should autism be assessed.

Some areas don't accept private diagnoses.

My DD has just got her diagnosis through at 17, it’s been a long process with CAMHS but well worth it. We now have legal protections, college are much more understanding … but the big thing is that the CAMHS Consultant has started her on meds to control the related anxiety. After missing 2 years of high school, and the first year of college .. she has now done a week at college .

I am so sorry to hear about your situation op. Your DD has a loving and understanding home which is helping her now but when she needs/ wants to venture out in the world a proper understanding of herself may provide the tools she needs to survive.

I have a 17 yo DD in y13 she has an autism diagnosis from when she was 8 yo, and was also diagnosed with ADHD aged 11. She has an EHCP, she takes meds, she has a really good understanding of what she struggles with and why and what her strengths are. This would be near impossible without the diagnosis. DD was obviously struggling, socially and emotionally at school and home so it was "easy" we had the evidence we needed for a referral and it was really quick. Now she still has a lot to deal with and uni on the horizon which is scary but she has the vocabulary and awareness that she can get help. Which makes a huge difference.

My Ds is very different and sounds more like your DD in some ways. He is older and at uni now. In school he was very academic and controlled, didn't have loads of friends but enough. Did not cause any concerns for school until he was around 10/11 and his sensory issues became more obvious. It was around y8 that he was diagnosed and if DD was not already diagnosed with autism we probably would not have understood even then what was going on. He had always had massive meltdowns at home about food, changes to his routine, homework etc. But was always controlled at school and never got into trouble.

So your dd may well be masking so much that it is causing her stress and anxiety. It takes a toll and a better understanding of what underlying causes there are for her stress will help her and you. If you can find a way to get her assessed then do. She needs to be on board at her age she needs to understand what is happening and why.

DD was the one who told us she wanted an assessment for ADHD and that she wanted medication we were unsure but she was right. Centre your DD in whatever you do it is her life. Good luck.

Thank you all so much for sharing your experiences and your insight and your support, it is appreciated. I will broach the subject with her. If she’s curious and willing we can look at a few questionnaires together and maybe take it from there. If part of her struggle now is due to masking and feeling at odds with the world I can see diagnosis will answer questions and with that hopefully open doors to support, understanding and acceptance. Thanks again.

I was diagnosed at 45, and it's changed my life. It would've changed my life in even more vast ways had I been able to get a diagnosis in my teens but only if I was born later. As it was, if I'd been diagnosed autistic in the 80s, it would've been a one-way trip to "special school", so obviously wouldn't have been in any way productive.

However, the world is very different now - there's a hell of a long way to go (as many posts on MN show in graphic detail), but a diagnosis is more likely than not to grant her a far less stressful life.

It does have to be her choice, though; trying to shepherd an unwilling autistic teenager through the process will just be a waste of time, money and family harmony. It may even be worth having her talk to somebody in their 30s or 40s who was diagnosed late - the sense of how it's affected their life may well give her useful information on whether or not to proceed.

Looking at similar for 15yr old. Waiting times can be horrendous but then you look at the effect on mental health of masking symptoms, pretending to be ok , self worth etc and we asked ourselves if we could wait?

Does she feel/see herself as different? Would knowing it 'wasn't just her,/her fault, there's something causing the difficulties' (said to me by a 13yr old girl) be ofcomfort to her?