Published on 12, July, 2020
My son is 23 years old, diagnosed with autism aged 5. He had done well in a special primary school, struggled but got through secondary school. He was very stressed by school by the time he finished, he refused to do a preparatory course for college, I was happy to give him a break and for a while he kept up some hobbies and had no problem going outside. Sadly, the pandemic gave him the world exactly as he would like it to be, everything closed and no one coming to the house. It has really set him back, he now refuses to go anywhere. I am so worried for his future, what will happen to him and will he be looked after by social services should anything happen to me, my husband died suddenly two years ago. I cannot force my son to go out, he helps with house work a bit and plays video games and that's it, I am struggling.
I understand. My son is 29 and also embraced the pandemic lifestyle of staying home, not having visitors in our home, and would rather order what he needs vs ever going into a store. He seems to enjoy our company but I, too, worry about who will guide him if something should happen to my me or my husband. I have reached a point where I consider telling my son he needs to leave the house for X number of trips per week - or I will insist he seeks treatment with a therapist. Of course, I can't really enforce much. COVID really set us back.
Hi, I hope it's ok to say this but I see this situation differently. I am autistic as well and 26 years old. You say that the pandemic and COVID "set you back". I don't see it that way. I'm sure you have experienced one of the following: imagine you are in a job that is very toxic and that is wearing you down and not good for your health. Whilst you are working and have this job you might realise it is not optimal but often only when you leave that job or have a longer time away from it, will you recognise just how much of an impact it is having on your health. Or someone that has had lots of digestive issues due to an undiagnosed intolerance (eg. lactose intolerance), they might only realise how bad they felt once they stop eating the triggering food. The point I am trying to make is that when you are in a non-optimal situation or environment, you often don't realise the full extent of the impact it is having until you are removed from it or the situation is remedied. This is what happened during the pandemic probably for your son. The world is not a place that is well adapted and suited for autistic people and over years it can really wear us down. When some of those stresses were removed during the lockdown, your son probably became even more aware just how much of a negative impact going out etc had on him. This is very normal and it is not necessarily a bad thing. Because it is very important to know what situations eg. going out to the shops to do groceries in your son's case, are causing us stress. Over time, autistic people are very prone to burnout due to constantly living with all of these stress factors and trying to mask and adapt to the world which poses many challenges. I think being aware of what is most stressful is important and it is even good to then avoid some of these stress factors in future if practical- for example, where is the harm in just ordering food rather than going to the shops?
I think where it becomes an issue is if not being able to go out of the house is stopping you from doing things you really want to do or if you have a job and you can't work remotely all the time and need to go out. Or maybe for a doctor's visit etc. Is there actually a need for your son to go out at this point? It might seem that by not going out now, he'll be less able to do so again in future- this might be true in part because we become desensitised and less able to tolerate the stress. But it can actually also be beneficial to have this break to actually recover from all those years and years where we were exposed to all of those situations, and ultimately that rest can make us more able to cope with stressful situations in future.
I think the key really is to pick your battles- what is necessary? Does your son go out for work? Are there any activities that your son likes or used to like that require him to go out? If yes, then I think you can use that as a goal- but I would give it time. It can take longer than you think to recover from burnout and stress. And if you can set a goal, then start small. It's all about picking your battles in my opinion. I can see that you are really concerned about your son not going out and that you are worried he wouldn't be able to go out if he really had to- but I am not sure it is true that he wouldn't be able to go out if he really had to- i think it is likely the lockdown just opened his eyes to what impact certain things have on his health and it has helped identify the biggest stress factors and also shown your son some very good alternatives which make his life better (like online groceries). I believe that if your son had a goal that required him to go out, he will be able to tackle this. It might be difficult at first. I might be completely wrong, but it seems to me that at this point, he probably just doesn't have a good enough incentive for him to go out of the house.
I don't know if this makes any sense. I don't personally have issues with leaving the house, though I do like to do office work remotely (I'm a neuroscientist). But I did really love the lockdown and it also made me more aware of certain factors that are stressful. I've also experienced burnout multiple times ( in part due to toxic work environments, not realising I was autistic, hyperfocus, masking etc) and I think it is very important to be aware of your needs and what causes stress and to strike the right balance between letting yourself avoid unnecessary stress whilst still being able to do the essentials.