Parent of finally diagnosed adult Aspie. Advice welcomed.


I am the mum and primary carer for my oldest son. He is an adult and has Bipolar aswell as the newly diagnosed Aspergers. I have always known he was on the spectrum and fought since he was a child to get support and him tested but no one seemed to hear me. His school called him immature, his father (i am quoting) 'doesn't know how to handle him' so isn't any help really and I've found myself being his emotional and practical support despite me being very unwell myself.

I finally managed to get him a psychiatrist, the recently a cpn for the Bipolar but manage the rest myself. I would consider his needs quite high but he is an intelligent, loving young man who has always described himself as 'eccentric not weird'. He lives alone as he prefers and his bills etc are all debited from his bank account. 

However, he has many physical illnesses on top of the other things and these mean many appointments which cause him to be overwhelmed. He lives in chaos and in what I'd describe as a squat like environment. He has a council flat and it could look nice but he doesn't seem to see why I am concerned. It is filthy and untidy yet he wants it left alone. If I try to tidy up he gets agitated so I do enough to clear a space to sit and wash his pots, disinfect his worktops to avoid food poisoning and do his washing. 

I attend appointments with him, I write on his calendar his important stuff and remind him a few days before etc. I check in him every other day as he likes the conversation and I see him at least once a week, sometimes more if he has appointments or is lonely. 

He rings me, often late into the night in a stare of anxiety about little things. He gets overwhelmed easily. I go over it with him and it calms him. 

Here's where I need advice. Due to my own illnesses it is becoming harder to manage. I get tired very easily. Emotionally I find it very hard sometimes. I worry what would happen should I not be around and often force myself to be available even when I am putting my own health at risk. He is my son and I'd do anything for him but I often wish I had help. 

He can be very negative sometimes, he struggles hugely with social skills and cannot cope with new situations or people. 

It's coming up to Christmas and I'm dreading it. I love Christmas but it brings with it more stress. How will he cope, will he want to spend the day with us, will he complain about everything, will he be rude about the food, will he be agitated. His choices are that he comes to me or he stays alone. His dad rarely asks him to go and even then he will more often than not he will choose to come here. His inability to embrace change is expected and his lack of awareness is also expected but how do i best enjoy it whilst helping him. I find myself getting anxious, then trying not to snap as he complains about the sprouts being hard or the programme I'm watching.,especially when I've calmly told him several times that he can leave the sprouts and I like  that programme but once it's finished we can do something else (or I just record it!!) 

I'm sorry if this is rambly but I'm new to this and desperately trying to be the best support I can but sometimes I wish I had the luxury of saying I can't handle it and leaving it to his dad for a change. We are divorced I should say. I love my boy very much but I need help. 

Any words of wisdom would be helpful. Please be gentle. If I'm doing it all wrong it's not by choice. I'm doing my best. 

  • This is such a difficult situation to be in and I really feel for you. Your description of the problems is really compelling and it is obvious just how much you care for your son. My first thought is that you really need to take care of yourself in the midst of all this. As you say it is getting harder to manage, you are getting tired, it is emotionally draining and you need help. As a carer it is easy to keep putting your own needs to one side. I have found out through my own experience just how risky that is. 

    Can you share what you have written with your GP and explain the pressure you are under? Are you already registered as a carer? I had a home visit from a carers' support service recently and it was brilliant. They really listened to me which was therapeutic in itself. They gave me practical advice and vouchers for free massage and aromatherapy sessions. We also talked about the importance of breaks from caring. It's so helpful to have a conversation with someone who is there just for you. 

    It's good that your son has a psychiatrist and a CPN as this means there will be a care plan of some kind. Can you share what you have written with them too and be very honest about your concerns? There's such a lot of emotion tied up in family relationships and Christmas is a really awful time for many of us. I found it much easier when I stopped trying to go along with the traditional celebration and did something on my own, but I can see that might be difficult for your son at the moment. 

    Do encourage your son to join this forum, or if it would work better get his CPN to suggest it. I'm sure he would find a lot of benefit in interacting with other autistic people. Many of us have faced similar challenges so we can offer each other support. There is also a strong social element to this forum which helps reduce feelings of isolation. 

    Very best wishes to both you and your son. 

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