Dad Died. Coping with Autism

I (36m) was diagnosed with Autistic Spectrum Disorder at the beginning of December. It has been an adjustment. Letting go of expectations of me that are in fact impossible, and trying to behave in a manner that is helpful to me (and figure out that is). I live midway down the country in England, my family live in the North East. About 150 miles away On Saturday, my parents came down to pick up my 6 years old daughters (twins). my dad drove, that was the last time I saw him alive. Early Sunday morning my dad (66) had a massive stroke out of nowhere. On Sunday I travelled up north (with my wife, who is ill atm) and picked up the girls, saw my dad in the ICU and went back down. I knew my mum wanted me to stay up, but neither my wife nor myself brought anything with us to stay, my brothers and my sister and the rest of my family are still there. Monday morning, the stroke consultants saw my dad, did another CT scan and said there was no chance of recovery or survival. For my part. The second I saw him and before I knew he was a goner, strokes have shockingly low survival rates anyway, but my instincts were correct. Last view I had of him was the Nurse checking his eyes and they were pinpricks, that is an indication of the drugs they gave him (which should have left his system long by this time), or severe brain damage as the information is not reaching visual cortex. I didn't tell any of my family this, they're all hoping, I already know the bad news coming Monday and I'm just waiting. I want to take my girls home. I want to be in my home in my safe places. My mum is hysterical. Maybe you're wondering why this in an Autism subreddit? Well it's this. I don't cope well around people, particular my family (mum, brothers , sister etc. etc.) in high emotion, it leads to overload, meltdown, trauma for me. I prefer in these times, normalcy, routine, calm. I realise this now after my diagnosis. That's why I spent yesterday doing a little bit of my dissertation (which I wish I could do more on, this was my plan for the week, get it done, which got severely screwed up) and building lego with my daughters. My mum is apparently in "hysterics" still (brothers description), and also talking about "inappropriate things" - which I take to be about very bad parts of my childhood, which was abusive and violent and would trigger flashbacks in me and could even make me angry (my memories of my childhood are very bitter, and if I'm honest, I'm still angry that my dad never apologised). Couple this with catching what my wife had and have had stomach problems since getting back.

So I'm home, this is my coping mechanism. My brothers have said it is okay apparently. I fear this being used against me later as an attack. I fear that I "should" be there, cannot tell if his is a defence reaction from my masking and mimicking behaviours. I cannot process my own emotions and the cacophony of others would be unbearable. But I worry I "should" be there. My dad is donating his liver and kidneys to someone, this caught me off guard and I find most upsetting. My memories of him did not figure he would do something like that. They took him off the ventilator but he kept breathing on his own for 12 hours, this prevented the Liver or kidneys being used. His higher brain functions are all gone apparently, there is too much brain damage to survive. The body is still going, he is dead, that's my thinking, honestly my thinking is he was dead when they told me, that's how I felt. So, what do I do? How to I process the feeling of feeling I "should" be there but being pretty certain this would be a bad decision and risks my own instability and meltdown? 

Additional. Had a phone call from my brother, dad is now dead. Hearing family on the phone being so upset was very difficult to process. Didn't know how to deal or respond.

  • Time will be the major thing and avoiding overthinking the negatives. 

    He was 2 years older than my dad when he died; about 1 in 4 men are dead by aged 65, the whole process was quite quick; it could have taken years of disability, pain and financial costs . No one was to blame

  • I'm so sorry for your loss. 

    Everyone copes with grief in their own way, in their own time. Try not to overthink about how you're grieving - just do your best to take care of yourself and take the time you need.

  • Condolences. It is always more difficult to process a loss like this if your family is dysfunctional and where hurtful things took place. The grieving is more complicated. I am still processing the death of my parents, actually another friend I met recently is still processing his parents' death, which took place decades ago. 

    There is always plenty of guilt too, especially over questions about being there. If you live a long way away, for example. If it was difficult to communicate with someone the way you would have liked to.

    I think you should accept whatever support is available and offered at this critical time and recognise your grief in whatever form it takes. Maybe limit time with any toxic family members, your own well being is more important than that. 

    1. My father passed away in August after a short illness. I spoke to him a year ago tbat i might have Aspergers but he was vehemently dismissive and made me quite angry. In May i saw a Psychiatrist who wrote a letter saying I had Aspergers and gave my father the letter to read when he was admitted to hospital. He did pay for my full diagnosis but died before I got it, so I never had the chance to say "I told you so" but also ask more questions about my late mother who had social issues. I will just never know now. I didn't and don't feel any grief and I'm not sure if I am supposed to. It not pleasant what happened and its not very nice seeing anyone waste away and eventually die. I assume my Aspergers and very low Empathy make me pretty immune from such things??? 
  • My parent were symbiotic too - and my mum refused to do anything for herself and tried to suck the life out of everyone to replace dad - it ended up in a big bust-up in the family - we didn't talk for 3 years until she figured out that she was the only one missing out on life - and when she got with the program, she began to enjoy herself.

    My relationship with my dad was bad until I moved out and got married - he then started to respect my abilities and lifestyle.    He would have been a brilliant grandfather to our daughter - but she missed out.   Instead she got a disinterested grandmother.

    My inability to deal with stress was one of the factors that led to my Aspie diagnosis - I perceive the world as 100% stress with occasional blips of normality - and the excess stress of that time triggered the colitis - which is horrible.

    If you're already having gastric problems then you really need to look after yourself - you REALLY don't want this.    I had a cancer scare in August too and I'm on some nasty meds right now but, luckily, no surgery.

    You're lucky you have your wife's mother available for you if you need to go and visit home - look after your energy and stress levels.

  • Thank you for the response and it's sad to hear your story.

    Oddly, my uncle, my dads older brother died in mid November. I was calm about that. I did the speech because none of my family can do public speaking (I can, I don't know if it's through my hobbies or a quirk of the ASD is I don't find public speaking intimidating at all).

    Contradictory behaviours, oh god that resonated. When my brother called it was just a cacophony, my mum crying on the phone saying he died before they could take him home as they didn't want to put them through that, I cannot make sense of that, I know on an academic level why people think such thinks but it doesn't echo.

    I think your story about ulcerative colitis makes me think I've made the right decision, I've had a lot of stomach problems in the past (I just had a colon cancer scare earlier this year, it's been a bugger of a year).

    I don't know if dad was the controlling element, he and my mum were so utterly co-dependent upon one another, like ridiculously co-dependent. I would think so though. My parents have a large house which is very much the family home. I worry about the widowhood effect due to the high co-dependency of my parents.

    My relationship with my parents, particularly my dad, improved once I moved away from the north east. They knew I would cut contact if they became abusive. It improved further once I had children. I thought my parents are better grandparents than parents.

    My wifes mum is coming to our house (from London, my wife and I are isolated from our respective families geographically). I am worried about this, simply because it is disruption however I do not have to worry about childcare if I want to go out or something. I need to focus on my dissertation which is due on the 16th January, this is frustrating, as I've already had extensions due to aforementioned health issues.

  • I'm so sorry to hear of your loss.    

    Your experience exactly mirrors my own - I had just got a new car - took it around to parents on the Saturday afternoon - laughing and joking with dad about all the functions & gadgets the car had (it was a top of the range Vauxhall Senator).

    We left about 1/2 hour later - all was fine.

    One hour later, got a phone call from mum's neighbour - dad wasn't well - come quick.    By the time we got there, the ambulance had just left so we all went to the hospital - he'd had a massive stroke and they scanned him and put him on a ventilator but there was really no hope.   They took him off the ventilator on Sunday but it took until Monday for him to finally die.   I wasn't there for that-  it was too traumatic.

    I remember all of the random and contradictory behaviours of everyone around me.    I couldn't process any of it.  My dad was the eldest of five brothers so the whole family was shocked.  

    I was 32.   I hadn't been diagnosed back then but I was very different to the rest of my family - an outsider.    I had never got on with my dad - I was a techy nerd, he was sport mad (I wasn't interested in any sports) and he was quite violent for any random rule transgressions that I might have made while growing up..       It was only in the last couple of years that we had found our middle ground and some mutual respect - and then he was gone.      

    My wife was pregnant at the time with our daughter and the pregnancy had lots of complications.      I was under a lot of stress.   The gp signed me off for a month with stress.

    I thought I was doing ok - until my uncle dropped dead 2 weeks later (undiagnosed brain cancer) - and another uncle dropped dead a month after (fast lung cancer).

    I gradually became very ill with a stress-related disease - ulcerative colitis - and that was 20 years ago. - and I've never recovered.

    I can only suggest that these sort of sudden changes can rip a family apart - especially if your dad was the control element of the family - all the rest go nuts in his absence.       You need to look after yourself and do what you feel is right - make sure you have no regrets because of poor decisions right now.      Try to support your mum but be careful about giving too much of yourself - your own family is the priority.

    I hope things get better for you.