Any positive stories of autistic teens learning to cope better?

[TheCountessofFitzdotterel]

Ds is 17 and has recently been diagnosed as autistic but has had an EHCP since he was about 8.
His life feels like it’s been on a downward trajectory since then.
He used to have friends and hobbies and do well at school. Over the years things have gradually fallen away. He’s spent the last few days in bed, pretty depressed, which is fairly typical. He is doing A levels but isn’t enjoying it and doesn’t go to school much or do any homework. He’s a bright kid but just managed to scrape enough GCSEs to be allowed to do A levels. He has a few friends (used to have more) but won’t see them outside school so we are worried that if he leaves school he will never talk to anyone. He won’t engage with any help such as autistic mentoring or counselling.
Does anyone have any positive stories of teenagers with autism who have turned things round or is the trajectory inevitably going to continue? I feel like we have tried so hard to help him and worked so hard to be optimistic but do we just need to give up and resign ourselves to him never doing his A levels or working?

Could it be that he's adjusting to the diagnosis and needs some time to process it? My DD got her diagnosis a few months ago when she was 15. She's also had a mental health crisis in the months following the diagnosis. Her best friend ditched her and she ended up unable to go to school and is having home tuition. It's been quite a difficult time for all of us. We got a psychiatrist privately who prescribed antidepressants for her low mood and anxiety and it has helped enormously. I think its quite common from what I've read, that children 'unmask' after receiving a diagnosis and let a lot of those things they've struggled with slide a bit. Her autism symptoms were completely off the scale to the point where she couldn't stand the sound of people breathing.
I'm really hoping that it's a bit like pulling off a plaster. You just have to do it, then hopefully they can gradually work through the issues and come to terms with what it means for their lives in the future. It may have been a bit of a shock, even though he you all may have suspected for a while.
He's done amazingly well to get the GCSEs and if he manages the A levels great. If not though, don't worry. Life will work out somehow. I try so hard not to fortune tell and catastrophise about what the future will hold for my kids (both ND) I know how easy it to do that but I think we just have to take it day by day. Remember he won't always be a 17 year old lad. There's so much more maturing to be done. Sorry I've really waffled, I hope you know what I mean!

Thank you, I really appreciate your reply x

Adjusting to the diagnosis is definitely part of it.
We have had a pretty good idea he was autistic for a long time- he was assessed as not autistic aged about 8 but it was very borderline then we were advised by get him reassessed after a mental health crisis last year in the middle of his GCSEs. He has been in denial about it though- he thought the reassessment was a waste of money and he went along with it reluctantly to humour me. He actually admitted he was worried that it would give him permission to act more autistic. He has autistic friends who present as much weirder than him and he didn’t see himself as being like them.
That’s very interesting about your dd unmasking.
I think I had hoped he would be able to work through it once he had the diagnosis but he is refusing to engage with mental health help (and would definitely refuse medication). The only thing I have managed to get him to do is to read a graphic novel style book about autism and admit that some of it relates to his own experiences.

Progress is possible but it isn’t linear and can often feel like 2 steps forward and one step back.

For some, work and A levels aren’t appropriate even if academically able or some need a slower path. DS can always sit A levels over more years. For some, they need a less intense path to avoid burnout.

It sounds like you need an early review of the EHCP. It is far more likely to be can’t engage rather than won’t and the provision needs amending to better suit DS’s needs so he can engage. What does DS enjoy doing or what did he enjoy?

We already had the EHCP reviewed but it’s not clear what other help he needs or could be given.
He likes Pokemon and hillwalking but it’s very rare that he will agree to go out for a walk. He used to like climbing but he won’t do that now.
It feels more like 1 step forward 2 steps back tbh!

It’s so very hard when he won’t engage. He can go for days without speaking and just getting him to nod his head slightly is a victory.

If DS’s needs and the provision he requires aren’t understood you need new assessments. Do you currently have the right of appeal? If so, you could appeal and seek independent assessments as part of that process to better inform the EHCP. If you don’t currently have the right of appeal you either need to request an early review or a reassessment of needs.

If DS likes Pokémon, does he like gaming?

It is far more likely to be can’t engage than won’t engage.

Assessed by who and how can he be assessed when he won’t move or speak?
I’m not being arsey, I genuinely don’t understand what sort of assessment you mean.
As for can’t rather than won’t engage…. Yes but what difference does it make?

I mean assessments such as EP, SALT, OT, clinical psychologist, psychiatrist, physio. You would be amazed what a good comprehensive assessment (as opposed to the rather inadequate assessments that the LA normally undertake) can pick up even if the child or young person can’t engage or can’t speak to them.

Can’t vs won’t is important because if you use ‘won’t’ in front of professionals/to the LA/to college it makes it sound like it is a choice and something within DS’s control. Professionals/LAs/services use won’t engage as a way of not providing more support &/or discharging &/or ceasing the EHCP. Whereas ‘can’t’ signifies the provision isn’t meeting DS’s needs and the provision/professionals needs amending and adjusting so DS can get to a point where he can engage.

Thank you x

We tried to get him to see an EP privately last summer after CAMHS woman said it would be good but there was no availability but we literally spent ages ringing round and could not find anyone.
We are lucky we can afford to pay for any assessments or help he needs but in between lack of availability and him not being willing to come to appointments in any case we it is like banging our heads against a brick wall.
He was seen by a series of social workers last summer after his suicide attempt. It was literally 6 different people because they kept leaving or being redeployed. The 5th was amazing and he actually began to open up to her but then she was moved to a different team and then they discharged us.

Good EPs have long waiting lists, but it is worth the wait. Cancellations do come up too. Some assessors are willing to come to the house if that would be easier.

Discharging DS is why it is important to secure the support via the EHCP.

But what sort of support even is there that could help him?
He has an EHCP and a supportive SENCO. School have been very flexible. But after reading countless books and talking to countless people I still don’t have a clear idea of what there is that would help him, without him being either willing or capable of engaging with it.

It sounds like the EHCP isn’t meeting DS’s needs and that DS’s needs and the provision he requires aren’t fully understood.

Without knowing a lot more it isn’t possible to say exactly what provision is required. Often the way in is via interest led provision. If DS likes Pokémon that may be the way in. There’s a lot of gaming provision out there now including therapeutic provision. You could look at something like Mindjam.

There could also be support to look at the environment and sensory needs. There could be support for communication.

Thanks.
He is absolutely adamant he won’t engage with anyone, even let them in his room. So any assessment has to be based on them not actually seeing him.

Mindjam has been suggested before but he refused.

@TheCountessofFitzdotterel I know your thread was a while ago but I wondered how you were getting on? My DD is younger but sounds much the same, not in school and won't engage with anything she doesn't want to, even if I know she would enjoy it. No EHCP so currently no school, GCSEs next year and I honestly despair sometimes.

Thanks for asking. It’s been unbelievable. Complete turnaround. He’s at a new school- a really demanding one - and living with my brother and SIL in the week as the commute would be too long otherwise. Yes, the boy who couldn’t cope with answering the door to the pizza delivery man is now living in a different city and going backwards and forwards on public transport. Working his socks off. Lots of new friends.
We had allowed ourselves to think that having experienced a gradual decline for 10 years we might just, if we could find something helpful, see a gradual improvement. What we weren’t expecting was this sudden transformation.
I hope something similar happens with your dd. This has definitely expanded my notion of what’s possible. Maybe it’s just a combination of the right opportunity being available and them being ready.
We are still aware he could burn out but he has already done more than we could possibly have hoped and been happier than he knew was possible (his words after his 2nd week at the new school). I hope that whatever happens in the future he will keep hold of the knowledge that it is possible to really enjoy life.

That's amazing news, well done to you for fighting to get him the right provision. It's so lovely to hear. Maybe I just need to give my daughter time. She's the loveliest kid when there's no demands but currently I feel like I've got no fight left. It does make me hopeful to hear your story.

Thank you.
Yeah, I think you just have to keep buggering on, throwing things at her to see if anything will stick, and also follow your instincts if you think something might help but other people think it won’t.
This felt like a ridiculously long shot, both his getting accepted by the school with GCSEs that didn’t meet their official requirements, and the idea that he might cope with either the living away from home or the public transport, let alone the actual school. I think also when a child has autism the things suggested are all about reducing the demands on them. Turns out he actually needed more demands, who knew?
I think a very big part of it was also that he craved independence. Again, with the EHCP he’s been constantly given less independence than everyone else. Living with my brother has been a useful halfway step to university, which we are now fairly confident he will manage, and I think has actually been positive rather than an additional challenge.

@TheCountessofFitzdotterel

Really interested in this post and lovely to hear your DS is thriving. How has the last year gone for you all? I'm hoping things are still positive.

We have been on a bit of a downward trajectory with our DS too, but he starts college in a few weeks and I'm hoping that he finds his people and that we start to see improvements. It has been so hard!

Sorry!
I wish I could be more positive but no, not great. The honeymoon lasted half a term and then there was a delay till we found out about it. He’s still in a better place than a year ago but university and A levels are not looking so likely now. Pity as the new school could not have been more perfect.

Sorry!
I wish I could be more positive but no, not great. The honeymoon lasted half a term and then there was a delay till we found out about it. He’s still in a better place than a year ago but university and A levels are not looking so likely now. Pity as the new school could not have been more perfect.

Aww no I'm so sorry to hear that. I'm glad he's in a better place, and hopefully things will keep improving bit by bit. It's so tough isn't it?

Well, this was a roller coaster of a thread!

I am hoping my DD will also make a recovery from a major autistic burnout aged 11. She was only diagnosed at 10. Last full time year at school was Y3 and she'd be Y10 now.

Did your DS burnout again? I do think less demands can be the only way forward and is what all yhe professionals involved with my DD are recommending. I was told by the autism specialist teacher involved to lower demands the other day... but not how (she honestly has so few).

I think accepting a different route will be needed is important, and also very difficult. I hate the future feeling so uncertain, BUT I am really happy to hear your DS is not in such a low place after the second school not being as perfect as he'd hoped for. That's progress in itself.

Joining this thread as it sounds similar to my DS, 18. He is undiagnosed (always a ‘quirky’ kid but coped well, high academic achiever until hitting a brick wall at A Levels) - have talked to him about neurodivergence but he didn’t feel he wanted/ needed to explore a diagnosis- I am wondering if I need to push again on this. He did poorly in A Levels, is now working (and seems to be doing ok with that, is managing the routine etc)- but apart from that mainly stays in his room, talks very little, no social life, no idea what he wants to do in the long term. He is polite and kind and quietly funny, but not thriving in the way I’d hope for him.

I worry that I’ve let him down by not seeking diagnosis years ago. And not knowing how much to just let him be/develop on his own schedule, and whether I need to take action and if so what! So no answers. But would love to hear anything that has worked for other people. @TheCountessofFitzdotterel How is your DS doing now?

It isn't easy to know whether it would have changed anything, if you had got the diagnosis earlier.
Maybe it would have encouraged you to fight harder for more accommodations when he was in sixth form/doing A levels, but sadly this seems to be dependant on what the school believes, with or without a diagnosis.
As my DD hit crisis aged 11, at the first half term of Y6, she was already diagnosed autistic. Yet when I had asked repeatedly for more support, emailed school repeatedly telling them how awful the after school restraint collapse was and how bad things were for her, I was constantly reassured that she was "fine in school," with a huge implication it was a home problem and was told she did not need and would not get any further support.

Once she hit crisis and they "saw" it, my rule following DD absconding by climbing the gate one lunchtime, running away in the mornings so we ended up chasing her down the local roads, not able to do any work, on edge constantly, in tears and begging to go home sometimes, THEN they offered a lot more support. But it was too little, too late. My DD has a formal diagnosis of school trauma from the CAMHS psychiatrist now.
And I tried, I really tried to get her more support. When I appied for her EHCP, I asked for the school CPOMS (their incident/safeguarding recording system) for her and saw they had watched a webninar I sent them on autistic girls in my desperation (it was recorded her teacher and the SENCO had watched it), saw my emails about how bad things were at home, snd how they had recorded, "Mum says the family are desperate." Even that makes me feel guilty, because I could have taken her out sooner. I should have. She is still very isolated, with no peer contact at all, 4 years on. She doesnt chat to me much at home, but her mask is super chatty and smiley out of the house. She'll talk to anyone, but had never managed to make a friend (as she'll pretty much only talk about her things).

It sounds like your DS may have had a period of burnout, or near burnout, while doing his A levels. It may be that he needs this time of not doing much else to recover, and then could explore what might suit him. Groups around hobbies or interests might be helpful, and so many say that knowing you are autistic can help with being kind to yourself and understanding why you find certain things so difficult so if he is keen, he could request a referral for assessment now.