Published on 12, July, 2020
My son, recently turned 15, has been diagnosed with autistic burnout. He excelled at primary school and although experienced some some anxiety we handled it. His first year of secondary was spent mainly at home due to the pandemic. In year 8 he started to miss days and weeks here and there with health problems which seemed to develop into anxiety. In March 2022 he stopped attending school and although he attempted to return at the start of year 9 he couldn’t do and he has been at home ever since. His world/comfort zone seems has become smaller and smaller since March 2022 and we are now at a point where he will not leave the house. He lives in the living room, rarely coming out, he doesn’t wash or brush his teeth, he spends hours playing Call of Duty. When we attempt to suggest a shower or invite him to join in with dinner he has a meltdown which might involve breaking things in the house and swearing/shouting at us. He avoids any communication with me since our last heated interaction, about three ago where I pleaded with him to get help and explained that things weren’t getting better. He still speaks to my husband fortunately but we are in crisis as a family. My younger son, aged 10, is being impacted with all this and is now on a reduced timetable due to emotionally based school avoidance/anxiety. He is also in the process of being assessed for autism.
We are terribly worried about our older son. He is such a wonderful, intelligent, interesting young man who is suffering so much. We understand that adolescence isn’t easy so hoping that once his hormones have settled hopefully things might improve but it’s heartbreaking to see him goign through this and refuse any help or support. We are also incredibly worried about the impact this is having on our younger son. Much of the advice we get seems to be in conflict, some people tell us there needs to be more boundaries around internet use for example where as others are saying the on line gaming community is his safe space and helping him through.
Has anyone experienced anything like this? Or is anyone goink through something similar? How long will this last? What sort of support should we looking for beyond CAMHS who don’t seem to be very clued up on autistic burnout.
Thanks for reading,
There are so few professionals who know about autistic burnout and even fewer who can advise on how to successfully recover. Sometimes the regression and loss of skills can seem permanent. The fact that your son has a diagnosis of autistic burnout at all is quite rare. From what I've read you are right that CAMHS does not seem to recognise it at all. The wrong kind of 'help' at this stage could be damaging and result in him retreating from the world even further.
It's generally accepted that the first step to recovery is to remove pressure and reduce expectations. So many autistic children find the transition from primary to secondary school incredibly hard. Sometimes the best option is to remove them from that environment, which you have done. However once their 'world' becomes smaller, expanding it again can seem so daunting and frankly terrifying for any autistic person.
This is one of the best online articles I have found that actually deals with how to recover from burnout:
https://autismunderstood.co.uk/struggling-as-an-autistic-person/autistic-burnout-what-helps/
Your son seems to have got stuck somewhere between the breakdown and repair stages. One risk is that, whilst autistic burnout is often wrongly mistaken for depression, a prolonged burnout can lead to a depressive state (due to being understimulated).
Your son needs to find things which he enjoys and will motivate him and to regain some structure and routine to his life. The online gaming is an important part but only a part, it is not a reason for existence and clearly isn't making him happy. Of course that is easier said than done when he isn't receptive to advice and support. I agree with the above that strategies for someone with PDA tendencies may prove more effective.
Is he engaging with home learning? Might there be local or online opportunities to connect with other autistic teenagers? You may be able to use parental hardware controls to ensure he is not accessing online gaming overnight.
Some online resources that may be useful:
https://www.pdasociety.org.uk/what-is-pda-menu/what-is-demand-avoidance/
https://theautisticadvocate.com/2018/05/an-autistic-burnout/
https://autismunderstood.co.uk/struggling-as-an-autistic-person/autistic-burnout-another-perspective/
https://www.change.org/p/make-schools-camhs-and-other-professionals-recognise-and-accept-autistic-burnout