Struggling hard as an autistic parent

Didn't quite know which area to post this in, so here we are. 

I'm a parent, sole earner (although we receive universal credit) while my partner is studying. Partner and child are both on the list for ADHD assessment. I've been referred for autism assessment after years of not bothering as I'd be very surprised if I'm not. My job is alright, my boss is really supportive and flexible to my needs. My partner is supportive, encourages me to do things which benefit my wellbeing. My kid is one of the good ones, as far as kids go. In our household of neurotypes I feel like I'm doing a lot of keeping things running and trying to provide extra support to help them be successful at the things they want do. 

I'm constantly exhausted and usually overstimulated. My brain wakes me up early (by my standards) and I struggle to get back to sleep. But I struggle to get up and face the day, knowing that I'll immediately be overstimulated by the kid wanting to engage with me. I feel bad about that, believe me! I want to be a good parent and partner, I want to be the kind who spends time together making nice memories but I also crave opportunities to not be around them, so I can do things the way which I find works. When the kid says there are things he wants to do, we can still end up needing to moan at him a lot to do so. I try to be very clear in my explanations of what, why and how and not be a "because I said so" parent, in hope that it will gradually inform the child's thought processes but I also recognise that's going to be a long process. 

What I think would help is feeling able to talk more about my frustrations but I don't want to discuss them with my partner as I know they will feel guilty about how I feel, and I don't just want to treat my friends as people to vent at as they have their own struggles going on, and I hardly see them these days as it is. But also counselling is SO expensive and so oversubscribed. I kind of just want to rant into the void. 

I expect there are others who feel similarly.

EDIT: I've just realised that I'm masking around the partner and child, trying to hide my frustrations and come across supportive in order to try not to make them feel bad so the times I'm not with them mean less need to mask, so more able to recover/be myself. 

Parents
  • Yes my daughter possibly has ADHD and she can say 7000 words within 15 minutes of waking up it can be too much some mornings! She also finds it difficult to do anything except watch YouTube, it helps her to have a checklist on a white board to help her know what order to do things in, especially getting ready in the morning and getting ready for bed. Even getting dressed for her best friends birthday party was a massive hassle. I also understand what you mean about bottling all the frustrations up so you’re not constantly moaning or making your partner upset. It’s really difficult when they can’t help how they are but at the same time we are doing most of the household tasks and holding down a job and getting more stressed. I’m not sure I’ve worked out the answer to that one yet, just continue waiting for ADHD assessment and hope he can get meds I guess.

  • It's weird how knowing that others feel the same can be comforting, huh? Thanks for sharing your experience. Ours has got pretty good at doing his morning preparation for school but I don't know how he manages to say so much and say nothing at all so early in the morning. Getting ready for bed is certainly more of a hassle in our house. We know that this sort of time is when kids often want to disclose things about their day which they've been processing so we don't want to discourage him from doing so and so try to give him chances to say what he wants to say but there's usually "also.... also... also...". We try prefacing what he says with "is it a thing to do with your health or safety? If not, let's get [toilet/teeth/pyjamas] done first then we'll hopefully have time to chat if you get the things done nice and quick" in hopes that will encourage promptness before the dopamine wears off!

Reply
  • It's weird how knowing that others feel the same can be comforting, huh? Thanks for sharing your experience. Ours has got pretty good at doing his morning preparation for school but I don't know how he manages to say so much and say nothing at all so early in the morning. Getting ready for bed is certainly more of a hassle in our house. We know that this sort of time is when kids often want to disclose things about their day which they've been processing so we don't want to discourage him from doing so and so try to give him chances to say what he wants to say but there's usually "also.... also... also...". We try prefacing what he says with "is it a thing to do with your health or safety? If not, let's get [toilet/teeth/pyjamas] done first then we'll hopefully have time to chat if you get the things done nice and quick" in hopes that will encourage promptness before the dopamine wears off!

Children
  • Hi there

    i use modelling clay, my son really opens up when we are making stuff with that. I find it calming as well which helps. I agree with screen time accept when my son has struggled through the day at school it does distract him. 

  • It's tough, for sure. I had another realisation over the last few days which may be of help to you in future or if adapted to be suitable for the ages and stages of your kids. We're not keen on too much screen time for our kid, as we like to be off doing things, but I noticed that now that he's at the stage to be able to do some collaborative, constructive play on Minecraft, that allows me a way to engage with him which is a bit more orderly and allows for some sensory regulation, which in turn puts me in a better mindset for further interactions. I don't particularly enjoy sitting playing videogames (although I easily end up hyperfocusing on it) but potentially, small amounts of time doing so may be enough to get us on the same page for interactions. Going to try doing similar with Lego and train tracks, too: setting a plan of what we'll build, working at it together, and seeing how that works for hopefully less stimulating interaction.

  • It's tough, for sure. I had another realisation over the last few days which may be of help to you in future or if adapted to be suitable for the ages and stages of your kids. We're not keen on too much screen time for our kid, as we like to be off doing things, but I noticed that now that he's at the stage to be able to do some collaborative, constructive play on Minecraft, that allows me a way to engage with him which is a bit more orderly and allows for some sensory regulation, which in turn puts me in a better mindset for further interactions. I don't particularly enjoy sitting playing videogames (although I easily end up hyperfocusing on it) but potentially, small amounts of time doing so may be enough to get us on the same page for interactions. Going to try doing similar with Lego and train tracks, too: setting a plan of what we'll build, working at it together, and seeing how that works for hopefully less stimulating interaction.

  • My partner is studying and is often home so they are another source of stimulation at times (they don't always realise how similar they are to the child) but I have enjoy the days when I can just have an orderly day working by myself and focus when I want!

  • I feel that as well. It’s tough but when it’s good it’s good I suppose. My youngest is 9 and is autistic. I just about keep it together but totally get the bottling your frustration up. I’ve found joining in with calm things at night has helped my son but helped me to be calm also. 

    good luck 

  • Ah yeah not having any alone time before my daughter went to school almost broke me. I work 4 long days so I always have a weekday off but when she was little it was too expensive to pay for nursery while I was at home. Now I get 6-7 hrs to do whatever I want in peace

  • My children are only small (2 and 5 months) but I relate to a lot of what you've said: waking early and not being able to get back to sleep, feeling overstimulated by the noise, wanting to be a good parent but also craving time alone (and feeling very guilty about this). Sometimes the noise and frustration makes me feel so angry. 

    It sounds like you are doing a good job in terms of explaining things to your child and setting boundaries. Thanks for posting this as reading it has helped me to know others are having similar experiences

  • Haha yes my daughter climbed into our bed and was talking about ww2 soldiers with no legs at 6:30 one morning, followed by “ *GASP* how did they get on the toilet?!” where does it come from Sweat smile