Published on 12, July, 2020
My son is 24 years old and was diagnosed with Asperger syndrome nearly 4 years ago after suffering depression and anxiety. Since then has been living with his grandad and rarely leaves his bedroom. In the past four years, he has had counselling from various different people, been on antidepressants, had a support worker (albeit for a short time) and been on a ‘socialeyes’ course run by the local ASD team. He also attended a support group run by the ASD team (for one session only as he found it too overwhelming). All the support has now finished - either because ‘there’s nothing more we can offer him’ or ‘he is not ready for counselling’. The only thing that he attends is a weekly disability football session which he enjoys (although again can find this too much at times). Other than that he is very isolated and has no friends and fear and anxiety rule his life. This is heartbreaking for me as he was happy growing up and coped well with school until he went to university. I really don’t know what to do to help him and I would appreciate any ideas from people who have experienced a similar situation.
Thank you for your advice about active listening - this is something I will bear in mind when talking to my son. Also thanks for the link to the autistic advocate - I’ll investigate.
Yes, important to go with his feelings and you will definitely get a sense of when he's feeling stressed and you need to steer clear. I am thinking more of active listening and just giving him space to talk, going wherever he chooses to lead the conversation. This might not be in the direction of a definite plan for quite some time but might open up the underlying issues and the things he might need support with, from his perspective.
Kieran Rose is The Autistic Advocate. i came across him whilst searching (desperately) for advice and found he lives in my area. theautisticadvocate.com/
Thank you for your reply. My son does talk to me sometimes but can shutdown when pressured so I’ve learned to take things slowly and give him thinking time. I have asked him what support he would like but he just says, I’m not sure - his response when he does it want to talk about something anymore but I’ll try again. I take your point at having a shared interest with him and I’ll think more about that.
Can I ask, what or who is The Autistic Advocate?
I am in a similar situation and struggling to find detailed answers myself. My own son (of a similar age) will hardly speak to anyone, myself included. However, if your son is still going to football and will talk to you, it sounds as though there might be more room for manoeuvre. Would he talk to you in more depth about how he's feeling and what help of support he'd like? What is he doing when he's in his bedroom? Is there any interest you could share with him or at least align yourself with? i recently went to see The Autistic Advocate and his advice was to take things very slowly. In fact, think about taking them slowly and then go even more slowly. But to gradually increase communication via mobile, notepads or brief, safe conversations with increasing regularity. Basically to build comfort and trust, with the possibility of then drilling deeping into what's going on for him and what support he'd really like (rather than what may be on the menu offered by well-intentioned professionals).
I do keep coming across this situation though. The thing i find a bit rough is that very often the help that is offered is very unlikely to be accepted by someone who is severely withdrawn and anxious. And i suspect many of the professionals offering this "help" actually know this. Usually they will empathise (smiling they'll acknowledge, "Yes, it's hard...", then cite the need for the person to be "ready" or to "gain insight" (before they go on their merry way) and so my question (of the NAS, Autism teams, local autism charities etc) is, "What can parents do in the meantime?
Thank you for your reply. It is heartbreaking to see your child struggling and not knowing how to help. I hope that this is a blip in their lives and they soon find something or someone to make them happy.
Thank you for your reply. I will show him the page on managing anxiety to see if it will help. As for the support groups, he doesn’t seem interested unless it involves football or maybe computer games but again I will mention it to him. I do appreciate your help though - thanks again.
Hi, I can't really offer any advice but I just wanted to empathise with you as I am in a similar position with my 18 year old daughter. She had friends at school but due to being in a CAMHS unit for 2.75 years with anorexia she lost touch with them. She now has no friends. She only interacts with the others on her college course when the course work demands it. She is so lonely and I am at a loss as to how to help her largely because anything I suggest she is unlikely to do. She won't go to any ASD social events, won't join any clubs. Neither will she consider any help for her anxiety or depression (other than meds) because her perception of people trying to help her is based on her CAMHS experience, which was not good. I so want to help her but am at a loss as to what I can do.
I feel your pain, because it is heart rendering watching a previously happy child, whatever their age, struggle mentally and not be able to help them.
Hi Steveda66,
I'm sorry to hear that your son has been going through a challenging time for the past few years. I understand how difficult it must be for you. It's clear that you've tried many avenues to support your son, including support groups, but you may still find the following link to a social groups directory from the NAS website useful:
https://www.autism.org.uk/services/community/group/england.aspx
Your son may also find this page on managing stress and anxiety for autistic adults useful:
https://www.autism.org.uk/about/behaviour/anxiety.as
I hope this helps in some way,
ChloeMod.