Newly diagnosed and burnt out teen

Hi Rosie, thanks so much for reaching out. It def helps to know there are others in a similar situation but so sad that you are!    I hope your son is doing better now.
Yesterday I had a chat with the psychologist who did my son’s autism assessment and she confirmed that he had severe burnout . ️ She thinks he might really benefit from a full psychiatric assessment but getting that is going to be a challenge! 

I have found the info and webinars from Naomi Fisher in the last few week we and found those really helpful. 

Thanks again 

Hi Imogen

I've only signed up to NAS today & just seen your post. It was almost like someone had written the last 18 months of my life!

I'm in exactly the same situation with my child.  Same age, same burnout , same diagnosis time-line, also out of school, also only engaging with music & films -and exactly the same feelings of guilt.  

Looking back, I feel so stupid that it never occurred to me that it was Autism, until his burn-out ( at the time I'd never heard of burnout and I had no idea what was happening to him). 

Every agency & charity I've contacted have listened very sympathetically, then said there's nothing they can offer.

I'm just grateful that his school has been understanding.

I am so sorry for your loss and I'm sorry your son is having such a difficult time now.

I do think that I underestimated the affects of burnout and how long it can take to recover. I wish I could give you more help, but I just wanted to let you know that you're not alone.

Thanks so much for your reply and support. I am thinking that creative outlets are best and more structured therapy might be just too difficult right now at least.

Hello, I’m so sorry you didn’t get the support you needed at the time. Thank you so much for sharing your experience and being so kind and supportive: I’m experiencing a lot of guilt for not identifying his autism sooner (I work in education and have taught lots of young neurodiverse people). I’m now just hoping I can get the support we need to help him through this. 

I cannot thankyou enough for posting about your son, I have been through an almost identical journey as your boy and I am now 25. I completed 13 GCSES while trying to work a Saturday job, Completed 3 A levels and and AS level. I was a high masking all this time...By the time I got to uni and was living by my self I literally stopped being able to function and became sui**dal and thankgod I was mentally strong enough because I have a little one now. I did not have a family which was supportive of me through my mental health Infact they shamed me and it almost pushed me over the edge.

So thankyou so much for addressing your sons difficulties from a daughter to a mother you are doing the best for him right now by asking for support. 

From my experience the only thing which can help your boy is easements being put in place for him during his education, extra support at school from teachers who are trained to understand ASD and lots and I mean LOTS of rest and downtime. It took me 2 years of sleeping in my bed to recover from all those school years of burn out.

I must admit CBT is always recommended for ASD people but due to those on the spectrum having difficulty with either introspection or hyper self awareness it can be difficult for this treatment to help but always good to encourage this support as it may lead to further support.

My advice is to get a therapist who is trained to work with ASD people/children. I wish I had the chance to have this, I now experience blood pressure issues and immunity issues because It was not addressed sooner.

I hope your boy gets the help he needs, too many young ones undiagnosed are suffering so much respect to you for reaching out!

Thank you so much for the encouraging and supportive reply

Imogen said:

I’d love to hear from anyone who’s been in this situation, am I doing the right thing by allowing time for him to recover with the hope that he’ll manage more therapy in the future?

Absolutely you are doing the right thing!! !! Your son is so lucky to have you - not every parent is as supportive unfortunately. 

Burnout is a horrible thing to experience. I have had it twice and both times were a horrible time where I had the most intense fatigue, pain and anxiety that I have ever experienced - the first time was during my GCSE's - the stress was too much to deal with but I kept trying and pushing and as with your son burnout occured. The only thing that helps burnout is rest - if you try to force yourself better you will make the burnout worse...

It's wonderful he has you helping him through this, that will be making a big difference that you are likely unaware of.

I think doing small things as he starts to get better will help him. Good that he is still interested in his special interests as well - that's a very good sign.

I hope this helps and he will be back to normal before long.

https://www.autism.org.uk/advice-and-guidance/topics/mental-health/autistic-fatigue/autistic-adults

I found this page on the site for you as well. I hope this page will offer some support and guidance to you and your son.

Hello thanks so much for the reassurance and for sharing the resources I will take a look.

Hello thanks so much for your reply and sharing your experience of cbt. He found it really difficult to identify and label his emotions during the cbt sessions (unsurprisingly) and found them incredibly overwhelming. I will look up MBCT. 

I agree that you're doing the right thing. Reducing demands is an important feature of burnout recovery. This is a useful article showing the four stages of recovery and how to progress.

https://www.barrierstoeducation.co.uk/burnout

CBT isn't really that helpful for autistic people generally and I certainly haven't found it helpful in the past. Much of it seeks to correct what is deemed 'faulty' thinking. However the autistic way of thinking is different but not 'faulty' and doesn't need to be corrected. The autistic person will often experience anxiety for very different reasons than the non autistic person and those reasons can be perfectly valid (eg sensory overload). Often it is the environment that needs to change rather than the thinking. The books by Luke Beardon are good resources for learning more about this approach.

I don't find cbt works effectively for the majority of anxiety that I face. CBT is about worry = anxiety so while cbt is a good tool to have under your belt generally, you can't think your way out of anxiety which is from sensory or executive function overwhelm. Also, autistic people can experience trauma for reasons neurotypical people might not. Also with cbt you have to rate your feelings on 1-10, I know I'm not the only autistic person who finds this difficult. There's also the fact that unless the therapist is autistic themselves there will probably be communication differences which can lead to difficulties in the sessions which he may or may not be aware of. There's likely still masking and going along with what's expected. 

My experience is if in burnout, shutdown, overwhelm or whatever it is, it's rest and recuperation that's needed. The difficulty is once you are rested enough,  to find a balance to get goung again without doing yourself in. Ie sitting at home listening to music and films is all very well but there will eventually come a point you need to start getting back out into the world.

What I have found useful is MBCT.

None of this constitutes medical advice. 

Good luck for you and your son.

Thanks. I can relate to putting yourself under pressure to go back to studying/work or even just to be productive. I think this is quite common. Taking time off for me is really hard even when burnt out- I don’t like not having something to do or not being productive and have high standards etc. feel guilty about not coping etc. In the past I actually only managed to stop and take time off after a GP told me I had to (I ended up severely underweight as I was just not taking care of myself and stress worsened IBS). I think people sometimes assume that when you are burnt out it feels good to take time off but it actually can be really hard to deal with even when a break is essential. There is usually the initial relief but then it gets harder. I think it is really good that you are supporting your son in taking the time he needs to recover and letting him know it is okay and a good and necessary thing to do. I think being unable to tell when you need some rest or a break and also finding it hard to allow yourself to do so is probably a factor that contributes to burnout in first place. 

I really hope you find the support you need for your son. I had quite a few different counsellors over years (mostly before my autism diagnosis) and I think if it doesn’t feel right with a certain counsellor it is best to stop. Because therapy can actually be harmful and counterproductive- people don’t often talk about this but I would listen to your instincts- I think some increase in anxiety after a session is probably something that can happen but if it doesn’t feel right, it might be better to find another counsellor or try another type of therapy. I’m probably biased on this matter though as I have some issues that were actually exacerbated through therapy. 

wishing you and your son all the best!!

Ann thanks so much for taking the time to reply and I’m sorry you’re experiencing burnout at the moment. 
It’s good to hear you think we are probably taking the right approach! It’s hard cause there is a lot of pressure to get him back to school (he puts it on himself too). As a mum there is a strong urge to try and fix and do something so doing nothing except supporting and being there feels quite hard!
Im fortunate in that I can pay for some therapy for him but he found the few sessions of cbt he had really confronting and the thought of each session just escalated anxiety to an uncontrollable level so it felt sensible to stop pushing. I  think you’re right some of this is finding the right therapist. 
I do hope you manage to access the support you need too. 

In terms of therapy, CBT is what the NHS tends to offer (at least for adults) however this is not always the best suited for autistic people. The NICE guidelines actually state that any therapy should be adapted in case of autistic patients. I have had some CBT on NHS - it wasn’t particularly helpful for me but that doesn’t mean it won’t be for someone else ( the adult CBT course I was on was very structured and not individualised)
Ideally you would probably have a specialist therapist that understands about autism and burnout- this is at least what the autism advisor at my university has recommended for me. My university might help me with funding to put this into place now as they feel the standard NHS CBT is not specialised enough in my case. Unfortunately the specialist therapist would only be available privately. I hope with the help of uni I may be able to access this- will know more in a few months. I don’t have very high expectations though for therapy in general but maybe this would actually be helpful 

Hi! You are doing the right thing! It’s so important to rest and retreat when burnt out. I was diagnosed at age 25 and I am struggling with very severe burnout again as I spent years and years pushing through. I wish I had known earlier on that I am autistic so that I could have been more mindful of how much energy certain things take and could have learnt to better manage everything to avoid burnout.

It can take a really long time to recover from burnout so it’s good you are giving your son the time he needs. Engaging with his special interests is also a good sign! 

In terms of support, sadly I’ve also not had good experiences with mental health services- they often don’t really understand about autism and  burnout can get mistaken for depression- I’ve been advised on countless occasions to ‘socialise more’ when burntout which was the last thing I needed. 

What I haven’t figured out yet is how to live life in a way that doesn’t lead to endless cycles of burnout- rest and time off is essential but if after the time off you return to the same environnent that caused burnout in the first place and handle things as before you’ll probably just burnout again. I think it is important to think about burnout prevention before returning- i haven’t figured out yet what that means for me but I am sure with your support you and your son can come up with ideas- it might mean thinking about adjustments at school or whether some study from home would be suited. Coming up with ways to ensure rest eg. Maybe somehow setting aside time for music and film. And thinking about other stress factors and if any can be avoided. I am sure there are also techniques to help with anxiety but I’ve also not figured that out yet. I think the key is probably to figure out what works for your son. It’s very good you are being so supportive and are allowing him to properly take time off. It will be very helpful down the line and hopefully it will avoid sleeping into endless cycle of burnout.