COPING WITH LOSS OF AN AUTISTIC CHILD

HI, we lost our son Danny to a Pulmonary Embolism in August last year. Danny was our only child. Danny was 31 years old and at  the higher end of the Autistic spectrum although he sometimes had trouble with his speech and got frustrated when he couldn't get his meaning across. Danny was a loving caring boy and was happy most of the time. We didn't talk a lot only short conversations about things that interested him but we talked every day. Both Danny and I were fairly private people and I believe I may also be Autistic although I was never diagnosed as we had so many similarities. Danny struggled with his weight and he had a limited diet which always worried us but there was not much that we were able to do.

Danny's death was very sudden and completely unexpected. He had a leg infection from early July up until he died but his leg was slowly improving and he saw a nurse every day to have his leg looked at and the dressing changed. No mention was made of blood clots or DVT and we saw no obvious signs. Danny complained of soreness but said he  was ok. On his last day Danny was sick and had cold sweats and a breathing problem for a short time so we called in the doctor who thought that Danny had a viral infection. That evening Danny was ill again so we called for an ambulance and although they came very quickly it was too late. They tried heart and breathing equipment for some time and then took him to hospital. They worked on him for several hours but had no success and they told us that he had not breathed unaided for some time and even if he recovered there would be severe brain and internal damage. We said our goodbyes and then they turned the machines off. We had to wait until October for a coroner's inquest to find out the cause of death.

Since Danny died we just don't know what to do and every day seems so hard. Danny was such a huge part of our lives for 31 Years and he always lived with us. We miss him so much and find it hard to cope with his loss. There is a big empty hole where he used to be and we are often in tears. We have received counseling which has helped but it is still very difficult for us. We have very little family and no friends, all our attention was focused on Danny and on giving him the best life we could. We miss his laughter and his caring and all the things we shared.

I would welcome any advice on coping with the loss and also with what we can do now we no longer have Danny in our lives just the memory of a lovely son.

Any advice on how we can fill our days would be welcomed. I don't currently work and haven't worked for Two years because of Fibromyalgia but have considered returning to work

Thanks for your help

This is the last photo we have of Danny taken December 2016 with his phone as my camera was out of power. It isn't a great photo but I treasure it.

Parents
  • Danny sounds like a very special person and so, so loved. I can't begin to imagine how to cope with such a loss, especially so suddenly and traumatically. I can understand your feelings of his loss leaving an empty hole in your lives as it's apparent how devoted you were to your son, missing his laughter and his caring presence too. You do still have those lovely memories of Danny's lifetime's worth of things you all shared though, those can still be treasured as Danny himself was. As such a close little family unit, I can imagine that you both were equally as important to Danny and just as treasured by him. He would want you both to take care of and treasure each other just as much as he would have during this time, I'm sure. I wouldn't rush too much into filling your days with anything other than taking care of each other for the time being and remembering your beautiful son together. 

    Have you been considering pursuing or exploring the idea of an autism diagnosis for yourself? Some traits of female autism appear to become more evident or troublesome with age, as mine have. If, as you say, it's something you have considered in relation to yourself then perhaps reading up on female autism traits could be helpful in deciding whether to pursue it further? In my own case I have found it to be something of a healing process as it's taught me how to understand and take better care of myself. 

    Sorry I couldn't offer much in the way of help but do take care of yourself and your husband and continue to enjoy those lovely memories of Danny.   xx    

  • Thank you for caring Endymion, We were devoted to Danny as he was to us. He told us he loved us both and he never wanted to live apart from us. Danny was a happy caring boy and always wanted to make our pain better (My wife has arthritis in both knees and her hand). You're right in that we have a lifetime of memories but it is so hard recalling a lot of the happy times although I am told this is common in the early stages of bereavement. We keep many of Danny's favourite things around us as a constant reminder. We have his ashes stored in his favourite talking cookie jars as we couldn't bear to be parted from him. Every day we talk to him and wish he would answer. I have been talking care of my wife as she had a fall in February. Before that we tried to meet with people in similar circumstances and that helped us a bit. I am male so female autism traits do not apply but I will consider getting diagnosed. Seeing so many similar traits in Danny and myself has helped me over the years as it helped to explain why I acted in certain ways. Socialising has always been difficult for me. Thank you for all of your advice. It does help

Reply
  • Thank you for caring Endymion, We were devoted to Danny as he was to us. He told us he loved us both and he never wanted to live apart from us. Danny was a happy caring boy and always wanted to make our pain better (My wife has arthritis in both knees and her hand). You're right in that we have a lifetime of memories but it is so hard recalling a lot of the happy times although I am told this is common in the early stages of bereavement. We keep many of Danny's favourite things around us as a constant reminder. We have his ashes stored in his favourite talking cookie jars as we couldn't bear to be parted from him. Every day we talk to him and wish he would answer. I have been talking care of my wife as she had a fall in February. Before that we tried to meet with people in similar circumstances and that helped us a bit. I am male so female autism traits do not apply but I will consider getting diagnosed. Seeing so many similar traits in Danny and myself has helped me over the years as it helped to explain why I acted in certain ways. Socialising has always been difficult for me. Thank you for all of your advice. It does help

Children
  • Hi Endymion, no need to apologise Thank you for your advice and explanation. I will look into diagnosis of autism Thanks you

  • Ah! Sorry, I did make the assumption that you were Danny's Mum and I shouldn't have.

    However, my advice still stands re. female autism traits as they don't so much refer to the sex of the autistic person but to a style of thinking and coping with regards to having autism - plenty of late diagnosed men on this forum say that they can relate to a lot of those traits!

    In fact, the coping strategies included in 'female' autism tend to be the reason that so many people (men and women) have gone un-diagnosed for most of their lives! The old diagnostic criteria was weighted heavily to reflect the mostly-male study-participants back-in-the-day and influenced by the then-popular 'Male Brain Theory' which meant that many people (men and women) were missed. New diagnostic criteria takes this into account and having 'female autistic' traits has nothing much to do with being biologically male or female. I hope this makes things a bit clearer, if I've explained it properly?