Autistic teen who is in denial

[Fairylights7]

Hello, bear with me on this one. My lovely (first born) DS is 15 and is a lovely and kind soul, very caring to his siblings and to me. From a very young age however, he seemed different to other children at toddler groups and reception, being late to talk, strong attachment issues, fixating on things, hating change, terrified at nighttime and such like. As my first child, I was a bit clueless and did not occur to me that there could be a SEN issue. He was generally happy at primary school however but did move friendship groups quite often. High school started as a bit of a disaster, with covid and lock down and he developed severe anxiety including OCD about routines and hand washing. We went through CAHMS who were pretty hopeless except for one 1:1 meeting with a lovely wise and very experienced CAHMS counsellor who, following me describing my DS in detail at one 1:1 meeting with her, advised that on balance (but without a formal diagnosis as there is a 2 year waiting list) that it was highly likely that he is autistic. I broached this with DS very gently and he was furious, completely denied that there was anything autistic about himself, that he was not ‘special’ (his words) and he did not want anyone to know about what the counsellor had said. In his mind he sees himself as being completely ‘normal’ but his day to day existence, rituals, failure to maintain long term friendships etc would indicate otherwise. For example, this holiday he is meant to be revising for his mocks but he is in complete denial and not done a thing, despite me reminding him every day. I did inform the school on a highly confidential basis as I was thinking ahead to what we do with his GCSEs with the strict instruction that should not be shared widely without my agreement as my DS would be furious if he found out. I’ve just watched the very good Chris Packham documentary on Living with Autism and watched a number of the people on it talk about how masking has been so exhausting and stressful for them. Just wondering if there is any wise wisdom out there on how I can support and help my DS who doesn’t want to acknowledge or admit that he is autistic. Thank you

My DD was the same. We have only just received the NHS diagnosis of ASD, ADHD and PTSD (only had to wait 3 months though as she was in the Crisis Team). She is 20, been raped twice in the last 12 months, sexually assaulted at school when she was 12, multiple suicide attempts. It’s nearly broken both of us. She is now on multiple meds and has a MH Lead Practioner and Social Worker. I’ve been shouting for YEARS, but I assume it had to get this bad for someone to listen. It’s shocking.

CAMHS were totally useless when she was 14 (said she didn’t score highly enough 30/35 and we were just dropped) and she was then in complete denial until she ended up being sectioned this January. It’s been a very tough time.

She’s now relieved she has a diagnosis as it all makes sense. She’s been awarded full LCWRA and in the PIP process - the form is horrific.

I think there’s only so many years they can mask before they hit burn out. For us, it was only then that she asked for and accepted help.

If you want to PM me that’s fine. 😊

Thank you for responding, I was starting to think that no one would. Am so very sorry to hear what has happened to your DD and what you’ve been through as a family - but glad for you that your daughter is now receiving the care that she should have had a long time ago. It’s so very hard for parents having to witness this and not being able to do anything about it, CAHMS are woefully inadequate apart from the amazing lady that I saw for an hour. We cannot afford to get a private assessment for autism although the CAHMS lady did say that they get one automatically at 16 (not sure this is accurate or not). The problem with my DS is that he is in complete denial and utterly rejects any implication that he is autistic, it’s street cred or not wanting people in his school year to consider him ‘special’ or different’ - his words not mine, I have challenged him using this wholly inappropriate language. During the CAHMS sessions he did attend (start of lockdown, on zoom, absolutely inadequate) he just said ‘dunno’ or grunted at every question and it went nowhere. I’m really worried that he’s going to balls up his GCSEs because his mind must be running at a hundred miles an hour worrying about fitting in, trying to mask his anxiety and worries, thinking about contamination, etc. Not really sure what I can do to help.

The NHS waiting list is long and although you can opt for ‘Right to Choose’ I’m not sure how that works for someone under 18.

It’s absolutely soul-destroying to watch your child through these years struggle so much yet be in denial. One thing my daughter did say a few weeks ago was that she always knew she was different but didn’t want to feel singled out even more. It’s a really tough age with peer pressure and all that goes with it.

My advice (from experience only) would be to shout as loud as you can and get on the waiting list ASAP. I’m the meantime, all you can do is support him as best you can. All you can do I suppose is explain that a diagnosis would help put in place help where needed - his peers wouldn’t need to know at all. There is support for them up to the age of 25 once they turn 18 but you have to fight for it. Does he refuse any structure regarding his revision? Would a tutor help him focus?

I wouldn’t stress too much over GCSESs - they can be re-taken. My DD still hasn’t passed any, yet gained a BTEC Level 3 with Distinction, Merit, Merit.

Thanks for this wisdom. He’s on the waiting list, he is a bit better than he was during the really tough year or so we had with him, so am okay to wait at the moment, basically I don’t think we are in crisis point now and he is high functioning and seems okay in himself. If he won’t acknowledge that there is an issue all I can do really, like you say, is to be there and support him and talk him down when he is getting revved up. My DH is a lovely husband and father but works very long hours and finds it very hard to deal with a son that is not how he was growing up. This means a lot of pressure on me, I also work and we have other children.

Well I wish you all the best. I do understand the pressure - I’m on my own with no family so everything’s down to me. I also have a very full-time job and time consuming pets 🙄 but I did end up getting signed off for 2 months earlier this year as I just couldn’t cope anymore. Much better now though!

Easier said than done, but please do try to look after yourself and get some quality time for you. Always here if you need a vent! 💐

Really appreciate the time that you have given today to provide wisdom and kindness, it means a lot. Sometimes it feels like everyone else has normally functioning children (even though that can’t possibly be the case) and feels like a lonely place to be, literally having to do everything you can to ensure that your child is okay and not spiralling. Sending you and your DD strength and hopes for a brighter future, you both sound like you deserve it so very much x

Ah thanks Fairy! We are lionesses for sure.

Try to take each day as it comes, it’s the only way to keep sane. Yes it’s lonely, as no-one really truly understands unless you live with it. I still don’t truly understand DD, of course I try, but I really have no idea what it must be like - the daily struggle. All we can do is listen and support as best we can. It took a long time for me to ‘accept’ but I do now and this is just life as we know it. Take care. xx

The Chris Packham documentary on autism was very enlightening for me, it’s on bbc iPlayer x

Hi @SoupDragon1066 Im so sorry to read what happened to your DD - horrific! I’m so glad she’s now receiving support.

Hi @Fairylights7 so our DS was assessed and diagnosed with ASD age 10, nearly 11 and we asked him whether he wanted to tell his friends. He said no and although he understood what his diagnosis meant, he has never told a single friend (he now sadly only has online friends) that he is autistic. He just cannot cope to think that people would know.

He is now 18 and still believes he would be bullied in real life if people knew. He left mainstream secondary school after only 2 terms and tried online school which also didn’t work out. Then he got an EHCP and agreed to go to a special school, where there were other autistic children (as well as children with other SEND diagnoses) and he still didn’t tell anyone he was autistic.

He has just always felt there is a stigma attached to being autistic and that mainly came from seeing stuff posted online on social media. I’m so sad he feels like this and hope one day, he’ll realise that he can integrate himself into society instead of barely ever leaving the house.

My DD so wants to help other young people she’s thinking about setting up a FB support group for her peers that feel they’re stigmatised. Her only friend (who lives 30 miles away) is also autistic. She’s so lonely it’s heartbreaking. People have always treated her differently (and she didn’t even have a diagnosis) and she was awfully bullied throughout secondary school.

There is a stigma, there’s no denying it - I’ve witnessed it in numerous occasions. Sometimes due to a complete lack of understanding, sometimes due to, well, not very nice people.

Hopefully, they’ll all find their tribe in due course. I just want them to be happy.

That’s a lovely idea! You’re right, there sadly is stigma but like you say, there are also just people who would be horrible to anyone.

Thats great your dd has a good friend.

Hi Fairylights, I've just stumbled across your post from a few months ago. It's as if you were writing about my daughter.
I was so struck by the similarities to my daughter, also 15. She has such awful social anxiety and trouble maintaining friendships. Many autistic traits, and more lately the compulsive hand washing like your son. Her grades are slipping as she just can't concentrate because she worries everyone is staring at her, even during her Mocks.
My son has adhd and autism and they are at the same school. She will not hear of it when I suggest autism as she doesn't want to be associated with how her brother is. Our local version of CAMHS is a 2 year waiting list and there is just no help available unless you self fund.
Anyway, it's all so difficult as a parent. My husband and I are so sad about our poor children.
I hope things are improving for your son and I wish you well.

Hello theordinary. Lovely to hear from you and sorry that you are experiencing the same challenges with your DD. DS did terribly in his recent Year 10 progress exams, he did barely any revision despite me offering him lots of support at home, buying him study guides and watching films of his GCSE English texts. He got 1-3s. He is late to puberty so don’t know if his hormone rush at the moment is making him worse, he certainly seems more aggressive and getting weekly detentions for not doing his homework despite being a kid who has never got into trouble ever for the whole of his school career so far. But good news, out of the blue CAHMS got in touch and he’s been offered an assessment NEXT MONTH after being on the list for 3 years. Guess they must have had more funding or a dictate to reduce their waiting list. He will HATE going to the assessment as he still thinks he is entirely NT but I am really struggling to support him at the moment and worry about his post GCSE future so will make him go - it will be in another town so hopefully more anonymous. Filling in the pre assessment form was quite illuminating as focused me on all the things which are slightly different about him compared to his other siblings. I think he can mask well but feels fairly miserable inside, which breaks my heart as he is fundamentally a kind, caring and loving boy 😞

Thats great news Fairylights! I do hope they can provide your son with some support now. It's going to be a tough few years ahead. I'm absolutely dreading GCSEs next year. As you say, we can provide all the necessary things to facilitate learning, but short of actually taking the exams for them we are powerless. I think I'll have to come to terms with that fact. It's so hard though. Good luck with your son x

I think that I’ve had to come to terms with the fact that he probably won’t do very well in his GCSEs (which I am also dreading) and won’t get enough marks to get into sixth form or university. This will be difficult as most of his friends will. This is what I did, although I had a full grant and it was different back then, perhaps his path will be different to mine and I accept that is not necessarily being a bad thing and fundamentally he is a kind and sensitive soul but thoughtful and caring. Good luck with your daughter and here to DM if you need to share xx

Thank you x