Hi
i I have just joined the Autistic Society although two of my children have ASD, ADHD and our son has Tourette’s, our middle daughter also has significant LD. our daughter is 24 and our son is 18, we have another daughter who is 28, who is ND.
We have just found out that a rare genetic disorder is responsible for our two younger children’s severe life-threatening and life-limiting medical conditions along with their ASD, ADHD and that my husband is has the Chromosome 16 Deletion too. At the age of 57, he has just been diagnosed with ASD and he is waiting for the assessment re ADHD.
Our marriage has been a rollercoaster since our son was born as our son is totally intravenous dependent and cannot eat/drink, his nursing care requirement is 24/7 as is our daughter and we lived in hospital with our son for the first three years of his life. This is when I saw a marked deterioration in my husband’s behaviour.
He had always been a bit odd, socially awkward, blunt and could come across as arrogant however, I had been brought in a violent household so my husband’s dependability, loyalty and calmness is what drew me to him. As our son’s illness unraveled and we were told he wouldn’t live, my husband’s coping skills got worse, along with his outbursts and temper.
Over the years, his temper, outbursts, verbal abuse and lack of emotional empathy and understanding, especially towards our daughters, particularly our middle daughter (who is also ASD/ADHD/LD), got to the point where we all withdrew from him and started to just separate ourselves as a unit from him when he was around. His ability to understand, communicate and empathise was all on his terms and his behaviour towards us when he was stressed or not getting what he wanted and or his children weren’t behaving and responding in a way he considered acceptable were borderline cruel.
in 2019 after a three and a half year battle with sepsis, my leg was amputated below my hip and I became disabled as well. I was very sick, but had to keep going as I could not leave my husband alone as he could not cope. Me getting sick was the final straw for him and having just found out what I had been suspecting for years that he also has ASD, I now realise why his behaviour has been so awful and out of control and he is far from the lovely, calm and devoted ma I married.
Any person on the Autistic Spectrum would never be able to cope with our home life that is crisis after crisis and full of unpredictable emotional and.physical trauma and pain.
I gave up work to care/nurse our children - I taught in special educational needs - so was familiar and able to adapt to our children’s Neurodivergencies quite well and also find it natural to learn as they get older and their needs change. My husband does not.
I have wanted to end the marriage for years, but underneath I know that it is our unique and tragic circumstances that have caused my husband to change and so it’s not his fault. Now to finally find out that he also has ASD, I can’t give up on my marriage as I would never give up on my children.
However, now for the reason for my post, does anyone have any advice, experience similar to mine, are married to someone on the Autistic Spectrum who can give me any advice on how to move forward
My husband will not accept any responsibility or take any accountability for his part in our relationship or what he has done/said in the past, our eldest daughter has very little to do with him because of the way he has treated and spoken to her. He demands change in me for our marriage to work I have so much pain and hurt from what he has done over the years and latterly how little emotional support and empathy he has shown me towards my own life-changing situation (he thinks bringing me food and drink, carrying things and doing some shopping is enough to show me he cares, I always say how grateful I am to him for this, although I did this for him without a word for twenty six years of our marriage. Instead he says, I am constantly having a go at him because he forgets to put things away or back where I need them and then I fall) When I try to explain that some of things he does and or says are really hurtful regarding my disability and or the children’s circumstances because he is unable to see life through our eyes, his response is always “It’s not my fault I’m healthy and have two legs.”
My self esteem, self confidence and self worth was already quite low especially after becoming an amputee, now I’m barely leaving the house, am isolated and so lonely. Over the last few years as I’ve become less physically able, my husband has become more controlling in an Autistic way, he is verbally cruel to our middle daughter who is loosing her sight and very overweight which he comments on all the time, he loses his temper quickly, which I recognise as him not coping, I try to help, but I just make him worse Unlike with my children who ‘work’ with me to try to understand a ND point of view after they’ve had an outburst or upset, we talk things through apologise and move on, my husband has no interest in listening to an alternative viewpoint, will blame us and never apologises .
i don’t want my marriage to end, but i don’t know how much of his behaviour is ASD and how much of it is him just being nasty because underneath he actually just doesn’t love or like me anymore. Whenever i ask him, he always says how much he love me and our children and follows up the statement with “otherwise I wouldn’t do the things I do to help you.”
I have sent endless repetitive texts trying to explain where things are going wrong, how I’m feeling, what I’m doing wrong, how we could try and fix things, what we could try, but I don’t get anything back about from,”You know I love you and the children more than anything.” My husband never and has never done anything to make an effort to change his actions or behaviour even when counsellors have been involved
my apologies for such a long and in-depth first message, but I am desperate to see if there is anyway I can communicate better to save my marriage and help my husband understand what I am feeling as a result of his behaviour and actions.
Thabk you for reading my message.
