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Autistic parent with an autistic child

NAS74317

Hi everyone,

I've long suspected that I might be autistic dating back to when I was about 15, I'm in my 30s now. As I learned more about Autism through work and met other people who were Autistic I was fairly sure. Fast forward to today and we have a son who is autistic, his nature, the types of things he struggles with (noise, textures) and many other of his characteristics I'm told by my parents are a carbon copy of how I was.

Up until now I've lived quite a "normal" life, mostly masking my feelings and hiding how overwhelmed I am, which has allowed me to get through things like having jobs or relationships. However, I've found having an child who is Autistic while myself being Autistic presents some unique new challenges and many of his behaviours clash with my sensory difficulties.I could often find a version of things which I could cope with up until now but you can't change the nature of your child so the last 4 years have been pretty challenging.

We are engaged with all of the different professionals which help us to meet his needs and we are having much more success with our days now that we understand how to manage these scenarios better. My wife recently quit her job to focus on being a stay at home parent, she was part time until now but it has just become too difficult as he is really struggling at the moment.

I was just curious to see if any of you guys are in a similar position, what you do to cope so that you can be the best parent to your children while also looking after your own mental health at the same time.

We find night times particually challenging, it can take 2/3 hours to get him settled and asleep and as hes getting older he is becoming increasingly physical. We understand and know the strategies to help him in these scenarios and carry them out each night but I find it incredibly stressful the nights where he is jumping around his room, spinning or lashing out at one of us.

His care takes up the majority of our time now and dictates most of what we do, we are happy to do this obviously and want be there for him and understand his behaviours (I feel this is something I never had). Just looking for some coping strategies or ideas from other parents so that we can be well ourselves so that we can sustain this level of demand as right now its taking an enormous emotional and mental tole on both of us but particually me.

Thanks in advance :)

  • in reply to NAS74317

    Sounds difficult!

    As a lesser of 2 evils, can you afford to buy cozy well-made headphones and give him a learning app for the car? 

    You may already have the BBC Broadcasting BD Pro 770s - sometimes children's headphones aren't made well and many austisc children will notice when the frequencies aren't well designed but won't be able to express why they dislike them. 

    I'm not sure what could be done with nursery. If there's other siblings, can they take turns running relays with him outside? It's healthy for everyone. It seems the things which would help involve going in the direction of where he's at only presenting something useful or enjoyable to throw all that energy into.

  • in reply to NAS74317

    I guess what I'm saying is, we are managing him and his needs pretty well and from the perspective of his well-being everything is going ok, but more broadly the effect its having on us and me in particular is pretty bad.

    We understand that doing circles around his room, jumping around, being loud helps him to regulate himself. We understand routine, specificness and all of those things help him cope. But some of them conflict with my ability to look after myself in a basic way.

    Most nights we go to bed immediately after hes gone to sleep having not even eaten.

    A lot of the strategies that exist only focus on helping the child to cope but the impact of doing all of these things on the other members of the family can be enormous. Thats the aspect we are struggling with the most. Finding a balance where we are ok as well as our son.

  • in reply to JuniperFromGallifrey

    We are quite similar in the things we enjoy so a lot of the time it works well, we enjoy quiet days outside, he has a very curious mind similar to me so a lot of the time, when its going well it works great.

    Its when things arent going well that it begins to fall appart, he struggles quite heavily with nursery so when hes been there during the day he comes home pretty overwhelmed and its difficult to do anything or calm him down. He will be very flighty, loud and sometimes we can bring it under control with various activities but not always.

    Its not so much the sensory differences between us its that when hes overwhelmed the behaviours he has to cope then overwhelm me, like being extremely loud, jumping around, aggressive, so when that goes on for prolonged periods of time.

    To give an example:

    If we go somewhere in the car he wont wear his headphones but finds the sound of the cars etc too much so will begin to get louder and louder, (he compensates for sounds with making sound), wanting us to go very specific routes or if he points something out that we didn't see he will have a breakdown which can lead to some very stressful experiences. Often when we arrive at the place, my brain is so fried off the journey that I don't enjoy what we are doing.

  • Wish I could help! What exactly are the sensory differences? 

    My son is quite similar to me in most ways (though I have more social issues), so creating an environment that works for me works for him. I found I could just treat him like I had wished I was or how my grandmother (ASC) had been with me. 

    My son has had trouble sleeping. What's helped is his having a rigorous workout routine, no LEDs and screens past a certain hour, reading a physical book under incandescent or low halogens at night, taking a micro-dose of ashwaganda for biology regulation during the day. Magnesium salt spray can actually help too. There are only a few LEDs in this house - one for safety and not near bedrooms. My son also just bought a sleeping mask as a lack of dark skies can have an affect on our cicadian rhythm. 

    I also won't be able to sleep if I'm calculating a thing: mentally working out a problem. Some nights I need to fully exhaust my brain and research something beyond my limits in a totally different field than work or hobby and force a redirection. Every now and again I do have to take something to turn off or it's like a spinning beachball that won't shut down and can have a negative impact on me physically. He has the same issue. I have a brother who researches physics and doesn't sleep for the same issue. 

  • Any parents out there who want to reply --- Welcome BTW Slight smile