Hi,
I joined because I simply don't know where to start to get some support for my relationship with my 27 yo son who has sensory integration problems and dyslexia (both diagnosed) and ASD (undiagnosed). He also has poor hearing and eyesight. I fought tooth and nail to try to get a diagnosis and support for him during his childhood, but failed. He didn't even get any support beyond 3 speech therapy sessions when he was diagnosed with sensory integration problems.
I am struggling because the things that he struggles with are invisible. He appears on the surface to be neurotypical, he is an excellent conversationalist, and even though he doesn't seem to make friends and maintain friendships, a close fried and family members mean a lot to him and he seems to appreciate being with family members and part of a household rather than being completely alone. He doesn't have his own home, and divides his time between myself, my ex husband (his father) and his grandmother, and sometimes his close friend.
Although highly academically intelligent and talented in many areas (poetry, music, dance, physical skills), everyday interactions with the outside world and communication are a struggle. For example, even though he is a very skilled driver with excellent spatial awareness (he's great driving the quad bike for example), he gave up on learning to drive to a combination of poor eyesight and struggle with sensory integration that made it impossible for him to have enough situational awareness and judgment to be safe in traffic, with pedestrians, etc. This is difficult because he is much happier living in very rural places than in cities, so he has to rely on family/friends to drive him to where he can get public transport. I'm grateful that although he seemed to have depression and frustration during different periods of his life, he now seems very content, and he uses his time productively getting exercise, helping me occasionally on the smallholding and pursuing his many academic and artistic interests independently albeit in a solitary way.
He has had one year at uni after which he dropped out, and has only had a handful of casual, very temporary jobs, He seems to have zero interest in any work or training. He is studying completely independently to get another A Level, but I have no idea what his progress is, or if he has a plan after he gets the A Level.
I am supporting him during the times when he lives with me. I don't know what he does for money at other times, but he isn't interested in spending money on himself, so I am only really buying food for him and paying for vets bills etc. for his dog. I can't find out whether he is currently signing on or not (he is fiercely private).
I'm worried that I might not be doing enough to encourage him to get out into the world, and to get some independence for himself.
I have enough space for him to stay with me, but I'm worried that when I die he will have no financial support or ability to live independently (his father can't afford to support him). With my and my husband's help, he has built a 'tiny house' on our land where he can sleep, hang out and do some simple cooking, with bathing and wifi available in our house. I'm hoping this will give him a feeling of independence and having to work out his own routines of clenaing/tidying, cooking etc.
I'm feeling really out of my depth, as it has surprised me the extent to which he needs support for daily living, given the 'invisibility' of his struggles. When I've tried to encourage him to do things in the past it has backfired, such as encouraging him to go to uni, which ended up not suiting him and leaving him with a lot of debt.
He is too old to take advantage of training schemes set up for young people, which only go up to age 25 max. I can't find any schemes for adults.
I've offered and he's refused counselling from someone to help him learn how to better manage his dyslexia and ASD.
Things came to a head today when I asked for his help setting up some equipment for a community event. He agreed but didn't want to leave his dog behind as she gets anxious without him. I assumed he would leave the dog in the car, because we know from past experience that although perfectly safe with humans and known other animals, she is highly unpredictable around strange dogs. But he didn't want to leave her in the parking area, which was out of sight of the event. I offered to hold the dog's lead for him to lift something heavy. He said no, he'd keep hold of her. I was distracted for a few seconds, and the next thing I knew, she was attacking another dog. He immediately pulled her off but it took several seconds for him to succeed, during which the other dog's owner was slightly injured, and the other dog although not appearing to be injured was highly distressed and crying. I quickly gave him the key and and said just go sit in the car. I apologised profusely to the other owner (I was in tears) and checked that he and his dog were OK. Luckily the other owner didn't want to make a fuss, and accepted my apology.
After I finished the set-up I'd agreed to I rejoined my son and his dog in my car. I didn't want to freak him out by how upset I was, so I calmly talked through what had happened. It turned out he thought that I wouldn't be strong enough to hold her back if another dog passed by. He also wanted to help, so he was lifting something with one hand, while holding the lead with the other hand, and that's when the other dog passed by and his dog managed to wrench the lead out of his hands.
He agreed that he shouldn't have been trying to do any tasks while holding the dog. I pointed out that if I asked him to do something that he was uncomfortable with he should feel absolutely OK to tell me no. If I had realised he didn't want to leave the dog in the car, I never would have asked for his help - and it seems he felt he should say yes, instead of explaining his worries.
He is very closely bonded to the dog, who seems to be good for him in a lot of ways. But being dangerous around other dogs is very limiting for him. I've also bought a muzzle for the dog, but he refuses to use it on her. I'm looking into a behaviourist for the dog but this is massively expensive. I am really fearful that the dog will attack another dog and kill or seriously injure it and have to be put down, which would be unthinkably traumatising to my son - as well as being an unacceptable danger to other dogs of course.
I don't know how to get an understanding with my son about what he needs to tell me (in this case - 'no, sorry, I can't help you'). I also expect that he will know the right thing to do in a situation, like keep both hands on the dog's lead - then I'm surprised when he acts in ways contradicting my assumed common sense. He's unwilling to follow rules I set down. I made it crystal clear that he's not allowed to have his dog off a lead outside of our property, because she can't be trusted around the neighbour's sheep - but he tests this all the time, having her off a lead if he can't see any sheep around, for example. He likes living on the edge and taking risks.
I would like to get family counselling from an ASD-knowledgeable counsellor to help me with communicating with him in productive ways, and helping us to reach and stick to shared agreements (for example like the dog muzzle). I would like to find out about ways that I can communicate with him that are not upsetting or confusing for him.
I am out of my depth and really need some help and support so that I can be the best possible mum and friend to my lovely bright caring independent-minded son who needs me to be on his side.
My husband has been really generous with my son, but he doesn't understand ASD and had two 'perfect' (now highly successful adult) children himself - he cares but doesn't really 'get it'. My son's father doesn't communicate with me and has never lifted a finger to support my son's various physical disabilities and neurology.
So I feel really alone with wanting to give my son the best chance in life.
Any advice would be gratefully received and appreciated.
Mitzi
