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two autistic children, and it seems my husband is also autistic- anyone in the same boat? I feel alone

Loz

Good Morning all!

I'm feeling pretty overwhelmed and I've no one to talk to. I have two autistic kids and my husband usually leaves me to do everything with them. He works full time and it's a long day for him, when he gets home he just doesn't have the energy or patience to deal with them. I've had hardly a break from them in 7 years, my parents live about 20 mins away and occasionally take them out, or my mum will have one of them for a sleepover (my daughter has sleep issues so wouldn't sleep over). So, while we are grateful for the help we do get, I just don't have the emotional support.

When I've tried to explain to my husband how exhausted I am he just says something blunt and to the point (because he didn't really want to have children in the first place), "Well, you wanted kids. You got what you wanted." From seeing how the kids are and learning about autism, both me and my husband have started to see that my husband is also probably on the spectrum himself. The problem I'm now having is that his anxiety levels are so high sometimes that he can't, rather than won't, be around the children much as they stress him out. He has gone down to a 3 day working week, as his company have had to make people redundant and reduce production. This has really stressed him out, especially seeing as we were already struggling financially largely owing to a shopping addiction he has had almost his entire adult life (but that's another story!) He had a kind of meltdown on Sunday, where a seemingly small thing triggered him and then he was shouting at the children and me, because they had derailed his plans. He had a conversation with his friend all planned out in his head, and because our son was on the brink of a meltdown, I said we had to leave. This tipped him over the edge. He was shouting really bad things like the children should be put up for adoption because we can't cope with them.

It is testing our marriage to the limits, to be honest. I can see it from the point of view of him being on the spectrum, so what he blurts out might be emotionally honest, but he's not intentionally trying to push us away or hurt any of us. It's the fact that in that moment he can't control his emotions, he has always had very intense emotional outbursts, positive and negative. I know that often he can be a very loving husband and father, he's not a horrible person. In fact he is totally loyal, very generous when able to be, and has a great sense of humour. I'm trying to keep in mind all the things I love about him, and what attracted me to him in the first place, because ever since my first pregnancy, he has been really difficult to live with. I'm not trying to paint autism in a bad light, and I know lots of autistic people rightly advocate for fellow autists, but I have to say that my experience of living as a neurotypical with all 3 of my immediate family members, including my spouse, is at times incredibly difficult. And that's with them all being "high-functioning" (forgive me if that term offends). 

Sorry for the long post, please show me love and kindness, I'm not out to have a go at the autistic community! I love my husband and kids as they are, I'm just struggling to get my head around my husband being wired this way. I don't know why, but I suppose if I thought my husband was NT, there would be hope for him to "change his ways" and grow to accept his children as they are. I have to accept that much of the behaviour that I find so difficult is a part of him and he's not able to change it, if that makes sense. I want him to be happy, and at times I feel as though I almost exhausted myself trying to make him happy, only to realise that it wasn't making him happy. In fact, he's only become more and more unhappy. I am worried about his mental health. He won't seek an autism diagnosis, he doesn't think there's much point at his age (54) . He also won't get help for his mental health, I've suggested it a few times but it makes him angry. 

Thanks for reading. 

  • I have 4 children. 2 of them have autism  and like yourself and husband realised that their husband is also autistic. 

    We have family but alot are flakey or just not cut out to watch more than one child, my mum raised 4 kids practically by herself yet not can't cope with more than 2 of my children for more than an hour even with my dad's help. They aren't very old either. My and my husband haven't been on a date together in a good 3 years. Everytime we've planned to. Family have pulled out or something has happened

    My friends are all childless or childless and single so it's rare I get to do anything, I may go out for a drink or a meal twice a year. We recently went on our first family holiday together and it was a disaster. 

    My husband can be very difficult more so than any of the children. His outburts have been alot, too much for me to handle somtimes however. I've put my foot down and he's a grown adult, if he doesn't want to do self help that's on him and I won't be a verbal punching bag. 

    It sounds like your in a bit of a cycle and somthing has to give.  I'd start setting boundaries and tell him to get some help for his spending and start changing things up a bit l, he doesn't need a diagnosis at this age really as alot of it is self help as an adult  but it does depend on where you live as to what help he can get without a diagnosis

  • in reply to Kate Kestrel

    Hi there,

    Thank you so much for your kind response, I have taken on board what you have said.

    My husband just the other day approached me to say he wants a chat about how he's been and that he wants to change his ways with regards to the kids and helping me etc. so I will hear what he has to say and try to gently suggest ways he can be more understanding towards me and the kids, without getting on at him.

    My problem tends to be a lot of pent up frustration and hurt which could cause me to explode! I am feeling a lot better now, as he seems to have calmed down a bit, for now at least, so I'm not quite as "on edge" with him. 

    My mum also had a chat with me the other day to say she's here for me, as she has noticed i'm not my usual happy self. So that has helped me to feel better too. 

    It is so interesting to hear your story about how autism affects you as a family, and from the "other side", with you also being autistic. Thank you for showing me that the parenting is 50% him and 50% me, regardless of autism. That is something I wholeheartedly agree with, and hope I can help my husband to see. 

    Thanks again for your support,

    take care,

    Loz.

  • in reply to ๐Ÿ Bees ๐Ÿ (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs

    Hi,

    Thank you so much for understanding and for your take on it from an autistic parent's perspective. Thanks also for the tip about self-help in lieu of a therapist. We really don't have money for therapy and hubby is really opposed to going to see someone anyway, so the internet is like a mine of info and help at our fingertips I guess! I will be looking to see what I find when I get a chance ... 

    Thanks again and enjoy your precious time with the little one. As you rightly point out, that time together will soon fly, so i'm choosing to enjoy my children today. 

    Take care,

    Loz.

  • Hi Loz,

    I found your post so interesting - partly because I and both my two children (now adults) are all autistic (with a diagnosis) and my husband is the only one in our household that doesn’t have a diagnosis of autism. Having said that he does have a few autistic traits - but not as noticeably as me and our children. 
    I am definitely aware that our struggles in life (that are mainly related to autism) have an impact on my husband in both positive and negative ways. So I can relate to what you say even though it’s from ‘the other perspective’. 
    When I’m really stressed out I do sometimes ‘lose it’ and freak out etc - I can feel totally overwhelmed sometimes and I know I’m not easy to be around for my husband when that happens. I feel very guilty afterwards, because he’s a truly wonderful husband who does his best for our family. Both my children have various health issues, and my youngest (who still lives with us - our eldest now has his own place) has really bad OCD. All in all there’s a lot of stress and anxiety that we have to deal with as a family, and sometimes it’s too much for us. The one totally stable thing in it all is that we all love each other so much, and we know that we are all totally on each others side, through good times and bad.

    In your post I see so many positive things. I can see that you are working so hard to be understanding and patient, and to do the right thing by your family. It’s far from easy to support family members with disabilities and/or mental health problems. Being autistic isn’t easy, and supporting autistic people sometimes isn’t easy, no matter how much you love them. Be compassionate to yourself for finding this difficult - because it is difficult! You sound like a really kind, good person. You need to take care of yourself as well as others - you don’t need to blame yourself or feel guilty for wanting help when YOU need help. Whatever his needs your husband is jointly responsible for the children - him being autistic makes no difference to that fact. Presumably he willing went in to the process of deciding to have children?! If he did then they are 50% his responsibility and he needs to do his share of the parenting. It’s perfectly reasonable for you to have boundaries about what you can do, and what you’re willing to do, and when you need help he should be doing his best to help you. Autism doesn’t come in to that - it doesn’t absolve people of their parental responsibilities. 
    I haven’t got time to write more, but if I were in your shoes I’d have a very non confrontational talk with your husband, a supportive and loving conversation where you tell him that you’re struggling and that you need some support yourself. That you need to work together to make things better for your family as a whole, because you ALL have needs, and you all deserve to be happy and supported by each other. Good luck! 

  • It sounds like a chain effect where his stress doesn't just stay with him at a managable level and is spilling over onto you too. Can your husband try some self therapy techniques to help manage the stress and keep his energy levels up? That way he may have more spoons to help out with the kids. The self therapy is just stuff you tailor to yourself from tips from the internet in leu of seeing a therapist, I used to do it as a stop gap between therapists and it worked well for me at least. Try look up "Autistic self care" and see if anything useful he can use pops up.

    I feel you with the not having a break btw, I haven't had a single day away from my kiddo in 4 years now. But between you and me (I'm autistic) I think if you are an autistic parent (and know you are) to an autistic child it is oddly easier (not easy, just easier, like my son has never had a meltdown at home because his cope-ablity is so actively managed here, unlike at school) because you often know what you are looking at with their behaviours, so know more or less what to do. At leat that has been my experience. I used to struggle not getting a day off, but tbh now I hold onto the days we can spend together as once teh teen years hit there's every chance his being my little buddy will come to an ened and he'll want to just go off and do his own things.

    Anyway sorry to hear you are having a tough time, I hope you are taking the time for some self care yourself too.