Can you talk to me about how ASC diagnosis (or not) helped your teen?

[parrotonmyshoulder]

I’m struggling with a decision, that will ultimately be DD’s, about whether to seek assessment for ASC. She is 13 and has shown strong signs since toddlerhood. Through the years I’ve prevaricated, been put off by all sorts of people, told I’m over thinking, biased (I work in SEN) etc.

DD is now struggling more and more as the pressures of secondary school and adolescence increase. We’ve moved schools to one which is much more supportive but she continues to find things really difficult. Social anxiety, hates being noticed, struggles with expressing empathy and perspective taking, rigid thinking, lots of other things.

My question is, how did a diagnosis help your child? Did it give them an understanding and acceptance of themselves (longer term) or did they see it as a negative.

Discussions with DH (who doesn’t notice any issues and has hence been part of the problem for 13 years) are yet to come, but I wanted to hear some experiences.

My child was a similar age when diagnosed. They were so much calmer and happier having an understanding of why they felt so 'wrong' in the world. Definitely worth it. It was a huge relief.

Thank you. That’s helpful to hear.
The decision is a hard one. I don’t know how or when to broach it with her. Nor do I know how to discuss it with her dad. When she’s ‘doing okay’ I feel like I don’t want to rock the boat but when she’s not, she’s not in a receptive state to reason, understand, discuss.

Could her dad have autism too? That was the reason in our family that XP thought that DD was just fine for years despite her obvious difficulties.

We were earlier with diagnosis but haven't regretted it (DD was 10). It did DD a lot of good to be able to understand why she finds some things difficult (and how to help her). It also helps others (including me) to take the pressure off expecting her to do NT teen things. She also had some specialist help (although could probably do with more). She takes longer to get around to doing some things, and others she may never manage or enjoy.

I think you have to be open at that age about the process.

Very likely indeed that her dad also has autism. However, him realising that is never going to happen and I absolutely think it’s probably the main reason he doesn’t notice. Even if he were to recognise in himself, he’d think that because what upsets/ worries her didn’t upset him, then it must be okay.
Thank you for your story. It does help to hear experiences.

It's definitely been positive for us once DD 12 was able to take it in. Diagnosis was recent and she found it difficult.
It has caused a lot of anger that it isn't fair for her to have these difficulties. But it is helping her understand herself better and longer term I'm sure it will help her self esteem. It's also brought more understanding from school/wider family etc.

@parrotonmyshoulder Both my children were diagnosed in recent years, at the time of diagnosis DS was 16 and DD 13. It would have made their lives much better if they'd been diagnosed younger. Unfortunately they did their best to cope with school and masked all the way through until they no longer could. Both have autism and ADHD and struggled, but didn't realise how much. Both well behaved and intelligent they went completely under the radar at school. For DD senior school was just too much.

They both ended up with autistic burnout and broke down. My son managed to get through and recover from his depression and burnout and is now at uni. He had great support in the first year and is now doing very well as he is in an environment that suits him and he can live life the way he wants (school was very restrictive). DD had nearly a year off so decided to go down a year and moved to a much more understanding mainstream school with vastly improved pastoral care compared to the old one. She would not cope at school without the accommodations she now gets. Also she loves her new school but gets very exhausted so I give her lots of support at home, otherwise she wouldn't manage.

They are both glad they are diagnosed because they now understand why they are different to others, although DS is much more open about his diagnosis. He sees it as a positive as he loves studying and we think he will go far in his chosen area. DD sometimes sees the positive in thinking outside the box compared to her peers. While she isn't quite as open as DS about it, she is beginning to love herself for what she is rather than just seeing the negatives. I would definitely go for a diagnosis and wish for my children's sake we had seen it earlier.

Thank you, this is all very helpful. I spoke to school yesterday and they tentatively raised the same concern and seemed to relax when I said I had considered it too. I understand how hard it is to broach the subject as I had the same issue myself with breaching it with DH.
He said ‘even if she is, why do you think we need to DO anything?’ Not as unkindly as it sounds when written, but very much like he is about things. I have said I think that her understanding why she feels like she does must help, in the long run. He thinks it might be ‘worse’ as she hates anyone knowing anything about her.
It seems to me, and to school, that she’s masked to her full capacity now and is letting us know that she can’t anymore. I worry about the burnout that you have referred to above. We have already moved her school and much of what we do is organised to meet her needs as far as possible.

We’re still struggling to make this decision. It’s been a good half term (although carefully arranged to meet DD’s needs) and, apart from being upset at the thought of school, she’s been okay. This seems to make DH think that she IS okay, as in that there is nothing that needs to be done.
I guess he sees autism as something very negative (and I’m not saying I see it as a gift or anything like that). The conversations with him are hard and have to be carefully timed. I would like him to speak to the referral team but I think he would cynically see them as trying to sell.

@parrotonmyshoulder She has probably been OK because she has been off school. The problems don't go away and just get worse as puberty hits.
Most dads don't 'get it' until unfortunately the child goes into crisis point.
Unless she gets accommodations she will continue to find school difficult if the experiences of my children and their autistic peers are anything to go by.

I came across this wonderful site recently and wish it had been written when we first encountered problems:

www.barrierstoeducation.co.uk/autism-and-trauma

See if reading this helps him to understand where her difficulties could be leading, sorry to sound scaremongering but I've been through it twice and I hate the thought of other families going there. Best of luck.

I suspected that my son was a
On the spectrum.as a teenager but he was very resistant to it and I think I was like your husband in that I thought ' who needs a label'. Anyway, cut to age 20 and he has ended up under a.mentalhealth team.and struggling, he is having an assessment now so if I had my time again I would pursue it. It will help your daughter yo have an explanation and also support from school etc

My DD was diagnosed at 16. Her main feeling was “thank goodness I’m not a drama queen”. All her life she’s managed (masked) really well, she had gone all that time wondering why she couldn’t manage things others could and had been putting it down to her being a drama queen.
For 6 months after her diagnosis we all really struggled as a family. Things she’d previously managed she suddenly couldn’t. She’d have meltdowns if DS was noisy on his XBox and when anyone was making noise in the kitchen, emptying the dishwasher etc.

My DH and DS found it really difficult and felt like she was putting it on and being difficult. It was like she became more autistic overnight. We got a lot of “you don’t understand because you’re not autistic”.

Six months on and we’re doing better. She is on medication for her anxiety and is in a better place I think.
I wish we’d had her assessed earlier, I think her mental health would be in a far better state if we’d been able to make adjustments for her earlier on.
Really long post!! Sorry x

Hope you don't mind me joining this thread. DD is 14 and has been struggling with friendships at school. Two weeks ago we reached crisis point, she disclosed self harm and suicidal thoughts at school and we saw CAMHS last week who asked 'had we considered neurodiversity'?

There have been many points in her life where I have considered it, but like you I always worried about overthinking it, and academically she has always done really well, no behaviour issues at school.

@RhinestoneCowgirl Just wanted to respond as it can feel like a lonely place when these things happen to your children. Especially when it feel like it comes out of the blue. Mine never ever misbehaved at school because they hated breaking rules and had spent so many years watching others and knew how to stay under the radar which didn't actually help in the long run! Hopefully you can get help as soon as you can. Definitely look into neurodiversity, it will probably explain a lot.

Thanks for replying @VMJ1 it does feel really hard right now, but I am pulling on all my RL support as much as I can.

"Mine never ever misbehaved at school because they hated breaking rules" this very much resonated with me. In many ways DD is a dream pupil, always well behaved, voracious appetite for learning, good grades. Just at the moment she doesn't think much of herself and that is very hard to see as a parent. We know what a warm, funny, intelligent and creative girl she is, and she desperately wants some friends she can feel comfortable with.

@RhinestoneCowgirl Your DD sounds like mine 18 months ago, she couldn't see anything good about herself as she'd hit rock bottom. With a lot of love and heart-to-hearts (and medication) she recovered enough to start a new smaller school which has helped enormously with her self confidence (although we still get blips) and her depression has lifted. We also joined a local support group for ASD girls which also helped both of us as we met other people in the same situation.

I'm glad things are better for your girl @VMJ1 , that gives me hope. Socialising with other ND girls has been suggested to us. When things are calmer I will look into that.

Just joining this thread as my son is also experiencing difficulties, especially socially. He is 13, Yr9 and I have had my suspicions for many years. But similar story, he was well behaved due to following rules and academically did well. He is now struggling, we already moved his school in Yr8 and he now wants to move again. Luckily hsi paperwork came through for his ASC assessment from CAMHS so I I’m hoping it won’t be too much longer. He was resistant at first but has come to
me tonight having done some more research and says he feels he likely is autistic, that a lot resonated with him. I think he would be happy to understand why he struggles.

It’s a really scary place to be as a parent, I’m finding. I feel a bit helpless.

My DS was diagnosed with ASD aged 17. It has really helped him to accept himself, and it’s helped us to adjust our expectations. I wish I’d been brave enough to go for the assessment sooner.

My daughter (aged 16) was diagnosed a few months ago. What surprised me most was my DH's reaction after the diagnosis. Before he would get really annoyed at her 'quirks' and constant anxiety and he would constantly say "when will she finally grow up?!".

We've since both learned a lot about autism and that these quirks are simply part of it. It has made my DH much more understanding towards her and now he is the one reading news articles about autism and informing me!

We are also now in the stage that @Fifteenhundred mentions above, where DD seems more autistic than ever, definitely more sensitive to everything, but it's gradually getting better. We're glad that we had her diagnosed now, as school was becoming increasingly difficult to the point where we were seriously thinking about taking her out permanently.

Do you mind me asking @itstoopeopleyoutthere did you go through NHS or private for diagnosis?

Hi @RhinestoneCowgirl , we are living in Switzerland now so unfortunately I can't give you any info for the UK. Hopefully someone else on here can answer?

We were referred to a private clinic - The Retreat in York by the NHS. Can you go through the Right to Choose thing? We’ve done that for an ADHD assessment and the waiting list is much shorter.

Thanks @Fifteenhundred I am trying to get a GP appointment for half term so will ask. We have been signed off by the CAMHS crisis team and received their follow up letter, which was quite a hard read.

I'm also exploring some practical things with DD like loop ear plugs for school.

@RhinestoneCowgirl Loop ear plugs have been a life saver for us. Having tried lots of different types, the Loop ones have been the best. My DD has the ones which block out everything and the ones which she can add bits to as she needs to.
If you Google which private clinics are part of the Right to Choose thing near you you can email them. We went with one in Harrogate and they emailed me a checklist and letter to give to the GP. The GP then referred us to the clinic and the waiting list is 6 months, which round here is amazing! Then the NHS pay for it!
It’s all so hard and such a battle. Good luck x

This is our situation exactly. Burn out and currently off school. She is on anxiety meds on top of adhd ones. Did you find this enabled a return? I am so scared right now. The school haven't really made any accommodations that have helped to date it always reaches the point of meltdown before people notice: what accommodations did your child get that helped?