Son depressed. At a loss about how to help him

My 32 year old son was diagnosed as being autistic 4 years ago.  He also has quadriplegic Cerebral Palsy - from birth - is wheelchair dependent and reliant on assistance with all activities of daily living.  He is very bright and articulate, attended mainstream education and gained a first class honours degree at university.  He has always been motivated and outgoing but doesn’t have many friends.  He lives independently with 24 hour care.  His life was fulfilled - he had some work, visited the theatre, cinema, travelled and was generally happy with a unique approach to daily living that relied on consistency, planning and avoiding change and stress.  The Covid came and work ceased and he was confined to his flat.  Since then his life has shrunk and with it his motivation.  He never goes out to the theatre or cinema only leaving the flat to come home to us, attend physio and hydrotherapy or go to appointments.  He is continually anxious and paranoid about people around him, very quiet, sometimes has screaming and crying bouts, stays in his room for days at a time and doesn’t engage with people.  He has had input from the mental health services but that has stopped and seen a psychotherapist but won’t engage with the activities and advice.  I am at the end of my tether and feel so sad for him with no idea how to help.  His anti-depressant was increased and seemed to work for a while but not at the moment.  I know he is depressed and has to contend with his physical disability as well as autism but I don’t know where to go for help and support.  I wondered if anyone else has been in a similar situation and if so what helped them, where did they go for support.  Thank you.

  • It sounds a tough situation and both you and your son have my sympathy.

    The enforced changes during the pandemic have had long lasting effects for a lot of autistic people. Some positive, as people have gained more experience of a quieter pace of life, more connection with nature and less pressure to go out quite as much. However your son has been impacted particularly negatively.

    happy with a unique approach to daily living that relied on consistency, planning and avoiding change and stress

    You have identified what worked well before. I follow similar principles in my own life. Getting back towards where he was is certainly not going to be easy. Progress has to be in very small steps at his own pace. It's very important that people don't assume that he can do something because he was able to do it before. Any small steps must still follow the above, whilst recognising that some change is inevitable to transition from where he is now to where he wants to be.

    I suspect mental health services did not have sufficient understanding of autism to know how to help him. I've been on the receiving end of their insensitive approach myself and it made things much worse. If they demonstrated a lack of understanding and pushed too much too quickly that would result in a shutdown and refusal to engage. Sadly those experiences may be feeding into to his current anxiety and paranoia. It will be difficult for him to open up and trust such services again. If he is to do so it really needs to be a therapist who understands how to work with autistic adults, something that isn't usually available on the NHS unfortunately.

    One positive is that he is still able to leave his flat to visit you. Perhaps you could use these visits as an opportunity to try and reignite some of his old interests or spark some new ones. Maybe you could look at the upcoming cinema or theatre schedules together or look at some travel brochures to see where he might want to go in the future. I think that having something to plan might help, however small and even if he is not yet able to act on those plans.

    You mentioned his excellent academic qualifications. If learning is something he enjoys he could try some of the free online courses They are short and require no commitment, therefore less pressure and stress. Hopefully there might be something that could spark a new interest, maybe even new possibilities for work.

    https://www.open.edu/openlearn/free-courses/full-catalogue

    https://www.futurelearn.com/courses

    I agree with the suggestion to show him this forum. Even if he doesn't want to post anything straight away, there is a wealth of experience and knowledge to read and realise he is not alone in his struggles.

  • That’s a good suggestion.  I will speak to him about this forum so he can access support for himself.  He needs to take that one step toward finding his mojo again but of course that’s the hardest step.  Thank you.

  • Hi there, 

    I am so sorry to hear what you're going through with your son. It sounds like a very tricky situation indeed. 

    I am not wheelchair bound, but I am around the same age and have lots of other difficulties outside of autism. I feel like the pandemic has a lot to answer for, for some of us. I also used to be fairly outgoing and went out to things on evenings and weekends, but since the lockdowns I think I've lost a lot of confidence and now don't leave my flat much (I work from home). 

    Can you encourage him to find work by searching online? Can you show him this forum? He would be welcome to start making posts and interracting with other people here. It's a really friendly place where he might find like-minded people to chat to. 

    Well done for being such a caring and supportive mum I am sure he is eternally grateful to have you!

  • Thank you.  That’s kind.  It is one of those problems that has no easy solution.

  • Oh my goodness. I have no advice but sending you lots of strength and support. Its aweful watching your own child struggle so much.