Monthly burnout

Thanks lisa-jayne, Its good to hear that  he's finding knowing he's not alone with these challenges helps.

Hopefully he'll find ways to be kinder to himself and balance out the demands of life, it's very difficult at times, especially for younger folks as they'll feel like they're having to sometimes exclude themselves from stuff others are doing to avoid getting burnt out.

It's not easy and it often doesn't make sense, the things we often think will be fine can take a hidden toll on us that builds up over time and all of a sudden we get unexpectedly burnt out.

Hi Lisa, 

It really is very hard on them and whole family puts immense strain on everyone and myself as his main carer and the one who is his whole world but also takes the brunt of the anger, and you feel very alone like you can do nothing right. 

My son also has learning difficulties so mentally and academically is nowhere near his age makes things very hard also.  Your advocating for them all the time, struggling to get help, filling in forms having assessments and the people who are supposed to help don't seem to do there jobs,  never reply,  take months to do anything and as you say things then hit crisis point but it should not be that way.

I had assessments for social care help got some respite but he went once hated it never went again so that didn't work. We've tried talking about supported living but no where near ready for that. I'm now trying to see about getting a buddy someone else apart from me to take him out but again paperwork, fighting to get help and takes forever.  

Hopefully, things will improve and these sort of long periods of burnout gets more recognised.  Like you I'm hoping hormones and things might settle.

For us also we plan things for him to do with his club as they have  to be booked i.e bowling activities, youth group which he loves doing which is all well and good but in reality we living on eggshells as we know any moment he will just stop again so it's becoming increasingly more difficult to do.

I wish you all the best with your son, and nice talking to someone else going through this.

Indeed, thanks - you too :-)

Hi Lisa, it’s a terrible situation isn’t it, such a worry when all you want is for them to be happy but very difficult when you know the next burnout is just around the corner.

The same for us, we withdrew him from school for 2 months but the episodes still happened.

Everything you mention is the same for my son, even the mental health team couldn’t believe how different he was once he’d come out of the other end.

I do wonder if it’s also linked to hormones, I’m certainly praying it is and that in time they will either grow out of it or learn to manage and push through.

I’m not sure about you but I’ve found there is absolutely no help available for these young adults, unless it hits crisis point which is such a shame.

I really appreciate your comment, just knowing there are other parents going through something similar gives me a little hope there might be an answer out there.

From one worried mum to another

Hi Lisa,

My son is 21, ASD I've being going through this for the last 3 years now, definitely got worse through puberty.  He is on anti depressants and medication to help with agitation.  He was in college and had so much time off through bouts of going for 2 weeks 100% engaged when there then 3 weeks off with complete withdrawal doesn't engage with friends answer calls or texts just stops.  Then I say it's like a light switch flicks off then just flicks back on out of nowhere and starts doing things again.   I have taken him out of college as he was missing so much work.  I have started him in an informal educational course 4 days week which again he loves when there and gives his all but then just stops again.  We have tried just doing 3 days but nothing changes these burnouts still happen and I have no idea how to make them better.  If I try and encourage or even talk to him about going back as good for him he gets angry when low mood. I like you worry about his future and how he will manage.  I would like to give you better help but I'm still trying to find help as well.  

Great, I will take a look and wow diagnosed at 58, I imagine you have re evaluated many of your life experiences, I hope this has helped you make sense of what sometimes seems/seemed such a struggle.

You have given me some great advice/tips, he would certainly benefit from speaking with other  young adults on the spectrum, I may see if he wants to set his own account up on here, possibly he will chat more/ask questions when mum isn’t in the driving seat so to speak.

Have a nice evening.

Many thanks Iain, I will take a look

This book is quite a good starting point to look at the different aspects of Autism in an easy to access way:

Understanding Autism For Dummies - Stephen Shore, Linda G. Rastelli, Temple Grandin (2006)
ISBN 0764525476

It is a little old now but still covers all the basics.

Thank you ‘Bunny’ that is fab information  I will take a look at all the links provided.

I will look forward to the book been published.

Clearly he is not alone, I wonder why there is not more information available regards ‘burnout’ for parents and the neurodiverse community, maybe I have been looking in the wrong places.

Many thanks for your time in responding

I’m sorry to hear your In a similar situation ‘Another Autisician’ Your right just the day to day things can be exhausting for the neurodiverse, never mind throwing college, social expectations etc etc into the mix.

I hope you find some comfort in knowing your not alone, I know my son has.

Thank you for the comment

Many thanks for the reply ‘out_of_time’ it certainly does help, thanks for your time with the response.

Just to hear others have experienced similar situations helps me and Charlie moving forward.

I think you’ve summed up what is happening perfectly, he certainly pushes himself during the ‘active stage’ (I will use that from now on) and hides his autism very well with friends, social situations, college etc which must in its self be exhausting.

It’s good advice to have a chat with him about potential triggers which may not be initially obvious to either me or him and yes a little bit of kindness and acceptance may be needed if this is his new normal.

Teenage years are so tricky, I’m so pleased we have found somewhere to discuss these issues in a safe and understanding environment, I found very little available in the ‘real world’ 

Many thanks again, have a great weekend.

This describes my experience of burnout too.

Once I'm feeling ok again I tend to go and do all the things I wasn't doing during,  then burnout again!

Trying to meter out the emotional energy we have and use over time definitely helps but is very hard to master. We use so much more on things than others , so when we feel we've got enough we sometimes don't think about how much we actually burn to do fairly simple stuff and end up running dry quick.

As an adult I want to offer my perspective. I have been through a huge burnout but I also experience these frequent bouts and undulations as I am finding my way through living with the effects. My experience is that, quite often "our sort" can be all or nothing types. It's very hard to change this aspect, when what really needs to happen is pacing, planning and prioritising of life (which is what official guidance probably says). This can be difficult when you have difficulty with foresight. 

It might be that after resting, your son suddenly has the energy, goes like the clappers (because there are things he couldn't or didn't want to do a few weeks previously and wants to make up for it, or there are things he feels he "should" be doing) then crashes out. I get help by way of reminders from those closest to me, ("is that a good idea?") but it has taken a few years to work out what contributes to accumulation (and it isn't always obvious). It also takes listening and trusting those around me on my part. Another thing which is difficult when you want to do your own thing and think you know best! 

I think what I'm trying to say is, if you can have some sort of dialogue with your son, or awareness of what contributes to these episodes, maybe gentle reminders can be given to pace which may help slightly smooth out the up and down aspect. I am reminded during my "activity" phases not to over do it. But I still do. I have to think hard and be reminded of the consequences if I were to overdo it. Often this can be unintentional and its only looking back do I understand why I crashed, but I try and "bank" this as a reminder. Then there's learning to be kind to yourself and knowing what you need to do (or being reminded of this also) when the crash inevitably comes. It is frustrating, especially when you don't understand the causes and I should imagine for an 18 year old lad, even more so.

I have come to the conclusion this boom & bust aspect is part of my life and while I do have strategies in place,  there's also an acceptance "this is how I am". However I am not a teenage boy but a grown adult and its taken quite a few years of self reflection and help from those around me to get to this stage of understanding. 

I've no idea if this helps but it's my experience and perspective.

PS if he hasn't already I suggest he might enjoy watching "Astrid murder in Paris" (French with subtitles) and the English version "Patience" on channel 4  and available to stream - helped me to gain better insight into autism :-)

Thank you for your blessings Lisa-Jayne 

I recall being 18, unknown to me being autistic and at college.  Retrospectively I perhaps went into a similar dip.  Negotiating changing circumstances is tricky for a lot of autistic people.  In my case i went through it as if it was a bit of a nightmare.  At the time I was fortunate enough to be taken under the wing of a couple of older friends and started working for them.  I returned to my education in a few years time and picked up further qualifications and a profession later on.  Financially this was perhaps better supported back then so perhaps easier than now.  However the insight into autism personally and socially was not present as it possibly may be now.  (I'm only recently diagnosed - age 58 and I'm now 60.)  Some support and engagement with role models may benefit.

Personal development, if it may be called that, progresses at different rates for different people.  It depends upon the possibility of learning from experience.  How this is supported and how challenges are faced, overcome, moved around or removed.  Sadly it is unlikely that society will remove the challenges that it presents for autistic people will be removed based upon simple statistics.

Retrospectively many of the difficulties I experienced related to a delay in practical independence in understanding how to engage with steering my own destiny at that stage.  The subconscious insight into how to engage with society proactively being at a delay in comparison with many people of my own age.  This seems to be an issue with autism.

Unfortunately many of the expectations and social messages about capability and behaviour young autistic people are absorbed in relation to "able" individuals.  Tricky if you're a great swimmer but you rate your capability against how good you are running against better runners than you.  Finding something to be good at and develop self-confidence from helps.  Importantly he needs to be able to tell himself he is good.

Accepting that one is disabled (at least in terms of how much of society appears to be) is a bitter pill to swallow.

It appears to me that many autistic people understand one another better than "neurotypical" people and can share insights, tips and skills.  Getting involved with other autistic people (ideally with a decent guide/supervision) may be another idea?  Perhaps there is a group locally?

Finding a way of enhancing confidence may be useful.  In my case I spent several years in martial arts and physical challenges from 18 onward.  Might be a balance to resolve the bed-bound thing.

Anyway I reckon your lovely young man has the potential for a very bright future.  Not inclined to lying I know this to be true one way or another.  We are after all made from star dust and what we are will be once again.

All the best. -/\- :-)

Hi Lisa and welcome to the community.

I'm sorry to hear of your son's struggles.

You might find this NAS resource helpful (the tabs also include a version for your son):

NAS - Autistic fatigue - a guide for parents and carers

There's also some great advice here from Dr. Megan Neff - a neurodivergent author (who's also a clinician and advocate) - along with a link to buy and download her workbook and toolkit if you wish.

I suspect these items form the basis for her new, physical book that's due for release in April. But your son's need is clearly immediate, so hopefully this online advice - and the resources, if you choose to buy them - might help in the meantime:

Neurodivergent Insights - Autistic Burnout Recovery: How to Build a Recovery Plan

Many thanks for the reply Phased, yes very distressing to see him struggling so much, he is such a lovely young man and has so much potential but worryingly cant see  a future with this happening every month.

Yes you are right about it been cyclic and I suppose at 18 his hormones are surging, there may be a link with that, possibly.

I have self referred to the learning disability team in the hope they can help him manage the build up of anxiety/stress, I think he manages, pretends, conforms for so long that his body/mind checks out for a rest, how strange.

I’m hoping to find someone who may have experienced something similar which even just for a worried mum would help immensely.

Bless you for been so kind, I also wish you and your family all the best, have a great day.

Lisa

Many thanks for the reply Iain. Yes apologise he has an Autisim diagnosis. 

We have hit a brick wall with the GP as he has never heard of anything cyclic like this before.

Since the overdose we have had the mental health team involved but as he has periods of been absolutely fine (which he is currently) they are discharging him from the service, so frustrating but understandable.

Yes we certainly need to develop a strategy to improve things, I’m hoping it’s something he eventually grows out of

Have a great day Iain.

Hi Lisa-Jayne 

I am sad that your son is experiencing these upsetting experiences and I can only imagine how distressing it is for you too.  I think I have an idea of how much finding an answer and more importantly a solution to what is happening means.

My answer is of course that of an interested amateur in this matter and please consider it in that respect. 

Having just read Iain response I think there is wisdom in their response.

From what I understand of burnout (if that is what it is) it is a complex reaction to stressors and is normally closely linked to the individual and their experiences.  

A clear cyclic pattern of similar symptoms could perhaps be linked with menstruation maybe however this is your son so...

Perhaps it may be more indicative of what may be triggering it in terms of something that is building up but is relieved by being absent from society for a week?

As has been mentioned further professional support and investigations?

Having been involved with the mental health crisis team I would imagine that your son may have some links till open to that via them?

Is there a support team at the college that may be involved?

As he is older than 18 and (if he is in the UK at least) he is generally responsible for making his own medical decisions unless lacking capacity under a legal framework.  This I figure adds an extra level of complexity to working on the problem as he is the one that will need to do the communication about the issue to get further help on it.  I believe that it may be possible for you to act as an advocate for him in discussions with medical professionals if he gives verbal or written consent to this (obviously without duress).

I imagine that there may be some complicated social communication involved and ongoing between you and he about this and, believe me, that part of my own autistic nature leads me to think I am not the right person to advise about that.

Nevertheless, communication about what's going on and to the right person seems to be a key to this.

Helping your son identify and be empowered to emerge from the cycle is the goal it seems.

I wish you and your family all the best and, at the risk of being patronising, well done for caring and doing the best you are able.  It's not easy but it's worth it.

Has he been diagnsed with any neurodivergent condition such as autism?

If he is 18 then I would have hoped school would have picked up on this.

There are quite a few free online tests if he is interested in finding out if he probably is autistic, and this would open the doors to knowing more about whether this is autistic burnout or something else.

I woulf think that speaking to his GP would be the logical way forward but if you can get him to take the test online then it may give a good starting point for the conversation if he is indicated as autistic.

If it isn't indicated as autism them it may be worth considering a therapist to try to get to the bottom of the causes here and develop a strategy to improve things.