If your older teen received a diagnosis of ASD when they were older…

[blinkybell]

how did they feel about it? React to it?

DD, 18, was diagnosed with Autism earlier this year and she has very mixed feelings about it.

On one hand, she’s happy and somewhat relieved. She’s always felt different and says she has always known something was going on, but every time we sought help was told she was ‘just anxious’ or would grow out of it, or the classic “mum seems anxious”, so she’s happy that someone has actually listened and she now has some answers.

On the other hand, she’s proper bloody furious that it has taken so long, that she’s had to struggle for years and years and suffer a rather spectacular mental health breakdown nearly 4 years ago before anyone would listen.

We have asked for help many times over the years, was told she was fine in school, there’s nothing wrong, it’s just anxiety, have some talking therapy or CBT, “just stop worrying” - the usual story of Autism in girls I guess.

I agree with her, I’m angry too, but I don’t think it’s healthy and would prefer to support her to process her feelings and deal with the anger rather than let it fester. It’s almost become her main focus now and it worries me.

Thanks!

Following with interest - I think my 19 year old DD is likely autistic. It is actually her who brought it up, I never would have done so! Looking back she has always had traits but I just put it off as her being a shy, slightly quirky only child! It’s only in the last few years that it’s really began to have a negative effect on her, especially when it comes to anxiety, friendships and education. I think she’s scared in a way to go for a formal diagnosis as she doesn’t want to put a label on herself but at the same time would benefit from adaptions in uni etc. It’s so difficult to know what to do

My DS1 was diagnosed with autism last year he was 18. He is having difficulty accepting it and has not applied for extra support at university. He is angry at the diagnosis and thinks there is nothing wrong with him - which there isn't it is just that his brain is wired differently. I think until he accepts the diagnosis and stops being angry nothing will change in terms of getting extra support.

My DS wasn't old in the grand scheme of things (13) when he was diagnosed a couple of years ago, but certainly old enough to know what it meant. He won't acknowledge the label and doesn't share info of his disability with anyone except those within our immediate family and certain members of staff at school. It's hard. You hear about how diagnosis opens up a whole new world to those who struggle to fit in, but in DS's case it's made things more challenging, certainly socially.

@blinkybell
My son was diagnosed very early but no one told him. I adopted him when he was 8. So when I finally told him it took a very long time for him to accept it, but of course he was much younger and acceptance came with maturity.

I'm not sure there is much you can do but validate her feelings, yes it was rubbish that it took this long, it shouldn't have happened but it did. You can't change the past, but you can make the future better so that's what we need to focus on.

And help her with a plan, coping strategies etc.
Good luck.
@MaloneMeadow
I would really encourage your DD not to see it as a 'label'. As you rightly say its a diagnosis. It's no different to a medical diagnosis. It's hard for them to get their head around it though.
My son has gone to university this year. He did a contextual offer, because of being care experienced and the ASD. The admissions tutor couldn't have been nicer or more supportive. I feel very comfortable with him going there and know he will be very well supported. They even had a two day orientation summer school for neurodiverse students which my son which was great as he got to find his way around before it got too crowded, see his room in halls and make some connections with other first years.

Mine was 16. Took it all on board. She’s 17 now, still feels the same. Follows lots of ASD women on Tiktok. Reads all about.

I was 13, diagnosed against my will, and I was very angry. I reacted to just the word being said, would not have it discussed in my presence, and I was in denial for the next 12 years.

My DS was diagnosed with Aspergers at 16.
When we arrived home after his diagnosis I asked him how he felt about it. He said I went out to buy sausages and came home with sausages.

I don’t think he cares he was diagnosed late as he was getting his needs met anyway.

My DH has just been diagnosed at 45! I'd validate her anger but also gently add perspective that 18 is still very young in the scheme of things.

Thanks all!

She was very much “No shit Sherlock” when she was given the diagnosis. She feels validated.

I think she just feels angry that no one listened.

She had a mental health breakdown nearly 4 years ago - developed agoraphobia, an eating disorder, OCD traits, she self harmed and then took an overdose - she is convinced that none of this would have happened If only she had been listened to. Maybe it would, maybe it wouldn’t, we’ll never know

She says she feels like “anxiety” was used as a weapon to shut her down whenever she tried to talk to professionals about how she was feeling.

She’s just so angry. And she’s totally right to be, but I fear it becoming all consuming. It happened, it shouldn’t have done and it was shit, but I think she needs to come to terms with it and holding onto so much anger isn’t healthy.

She’s amazing - she’s come so far, overcome so much and is doing brilliantly. From the girl who quite literally couldn’t leave her bed to use the toilet without having a panic attack, she’s now at college, has a part time job and goes out with her friends. I guess I’m always a little nervous that we may end up back there (not that she’ll ever know that).

@blinkybell

she sounds like an amazing young woman.

would she consider counselling?

She’s aged out of CAMHS now but our local one has a transition CAMHS/adult services psychiatrist who DD can see whenever she wants. I’ve asked DD to call her and talk it over with her but she’s a bit reluctant.

She says she’s done with counselling and is fed up with talking about it all now.

I suggested maybe writing out a complaint, although who we’d send it to I’ve no idea, but maybe just writing it all down and getting it all off her chest would be cathartic. She’s thinking about that idea.

My 15 year old is on the asd pathway and we are hoping for a diagnosis in the next year or so. We have been saying something wasn't right since I was pregnant and suspected sensory problems since he was about 2. He has already accepted he is autistic and has done since Camhs told us he was obviously autistic but they couldn't diagnose officially. This was nearly 3 years ago.

I had experience of working with teens with autism and it's very likely other people in my immediate family are autistic so DDs quirks were always on my radar but they weren't an issue at Primary where she thrived.

Like most it all went down hill when she started at secondary, I introduced her to the idea, she looked into it herself and did the AQ test and it came out high, didn't get much support from school initially as Sendco was on maternity and the family support worker we were initially put in touch with said she was fine. DD very clearly was not fine, I knew it was a 4yr+ wait and as she doesn't display challenging behaviour I bypassed the GP and went straight to a Private diagnosis. DD was thrilled that she wasn't actually losing her mind and there was a reason for how she felt . School were then very supportive and I can't fault them. She fully accepts her diagnosis and is learning to cope with it, where her limits are and how to deal with it when she unintentionally crosses those limits and gets overwhelmed.

She tells people on a need to know basis, interestingly she has chosen not to tell her dad as she likes to have an aspect of her life that is unaffected by the diagnosis and only sees him once a week and is happy to mask for that time.

She had a mental health breakdown nearly 4 years ago - developed agoraphobia, an eating disorder, OCD traits, she self harmed and then took an overdose - she is convinced that none of this would have happened If only she had been listened to. Maybe it would, maybe it wouldn’t, we’ll never know

I experienced similar after diagnosis from around 15 to 20. Anorexia, depression, acmxiety, self harming, self medication, an overdose.