How does Autism affect your family?

[AutismHousehold]

Hi all

I see threads about ASD and how it affects the individual but I wanted to ask how it has affected your family/household as a whole?

I’ll go first, my DC has not been diagnosed yet as we’re in the process but it’s pretty certain they have ASD.

DC doesn’t get on with their sibling 90% off the time as there is a 6 year age gap and sibling seems to be a walking trigger for DC in terms of being loud, messy, mischievous and boisterous. I have the role of referee and there is no harmony in the home due to their constant clashing.

Sometimes I feel like I’m walking on eggshells so as not to upset DC as they are hypersensitive. I think carefully before I word things.

I try not to overwhelm DC with too many instructions or chores as they get easily overwhelmed and struggle to take direction sometimes. They can be easily distracted so one simple instruction at a time works best. Plenty of prompting and encouragement needed around brushing teeth, changing into pyjamas etc.

DC can be moody, teary, random crying outbursts and so I’m always on edge if there is bad news to be delivered, if there is criticism to be passed etc.

DC can get extremely irate if routine or plans change. I feel myself on edge when I have to be the bearer of this news and receive the backlash. It’s not a nice experience for either of us.

Day to day there are many factors to be considered in a household with an ASD member. It is hard for the individual but also for the family.

How are you all doing? Any tips?

I'm ND, I was practically a third parent to my much younger ND sibling, then my DS has some ND traits. I don't know how much of that is nurture rather than nature, I am a lone parent.

We are very close as a family and have learnt to adapt to each other's needs. My DM struggled to understand either her ND or NT children and we all had a difficult time until leaving home so that has made us closer to each other.

Not much support from wider family so we basically manage by ourselves. There are some family members who aren't understanding of Autism so we've gone l/c with them. I've had a sibling scream & shout at me for spoiling my dc when all I've done is made reasonable adjustments for them. I find it hard to be around that sibling now because I don't know what they're going to say next.

Ds is 13 and has Autism, considered to be 'high functioning'. He has mild OCD tendencies which rear their head occasionally but his autism is mostly anxiety based. He is a lovely lad. Quiet, ultra sensitive, has an amazing ability with numbers and problem solving but can't handle even a mild cold - (Currently in my room and yelling loudly every few minutes. He's never been so ill. Ever). He eats most foods but has a crap appetite. He will have a tiny portion of dinner and sit nibbling at it for hours. Skips breakfast and bins half his packed lunch. I worry about his undereating. He develops obsessions and HAS to buy whatever it is. In recent years he has started to fund his interests with his savings. Thankfully.

He masks well at secondary school but isn't really coping at all. This led to terrible autistic burnout a few months ago and we went through a period of school avoidance. Every day I worry what kind of day he's had and I feel it's only a matter of time before I end up homeschooling.

Like many pps, our household centres around his needs (mostly sensory. Always control of the TV and ps5) and it's a constant battle keeping the peace between him and Ds2. Autistic DS can't help himself and HAS to come out with something mean or provocative which leads to bickering and tears. Every. Single. Day. Multiple times a day. DH (likely on the spectrum but won't get diagnosed), feels I pander to Ds too much but the truth is I understand his needs and DH can't see why certain things he says and does upset DS.

Ds2 is loud, loves singing and shouting, always on the move (he has ADHD traits I feel) but DS1 just cannot cope with the noise and sensory overload. I do feel for ds2 and he's now joined boxing so he has an outlet.

There are days when ds1 isn't himself and is hyper, and talking incessantly about anything and everything. It's mentally draining by the evening because if I don't show full interest he gets upset.

I found this thread yesterday evening and just wanted to say thank you, for starting the thread and for sharing so much of yourselves. 🤗

We have 15 year old twins, one of whom was diagnosed with asd & add earlier this year. The other is going to an evaluation meeting today and is going to hear that she has autistic traits. The onset of puberty, lockdown & covid anxiety amplified the challenges the girls face and ultimately has lead to their assessments. these past few years have been the loneliest and most isolating and at times I’ve struggled to keep going. You meet so much criticism and judgement from all sides, other parents, school, friends, grandparents and your children themselves - it gets harder and harder to hold to yourself and the knowledge that you are doing your best with the very best intentions and deep love for all your kids. (The girls have a younger nt brother as well, who I worry about constantly)

DD1’s diagnosis was hard for her to come to terms with but we are all seeing and understanding each other so much more now - I really hope that DD2’s evaluation is going to go in the same positive direction.

this is such a long way to say thanks, so many of the posts feel so familiar, instantly recognisable relatable situations - it’s somehow comforting to know so many of us out there are singing the same song, parenting in time to our children’s unique tempo. Somehow it makes me feel a bit braver. xox

I dunno. I have 3 boys who are all ND but eldest most significantly impacted.
We bought a bigger house so they could each have a room as #1 and #2 needed their own space. #3 has always been much more easy going.

We just adapt. Example: from about age 12, #1 came on holiday with us, but chose whether he wanted to join the activities each day or stay in the house on his computer. That way everyone enjoyed the holiday. He hates showers, so we make sure there's always a bath wherever we visit. He hates haircuts, so his hair is long. We alter meals, but only a bit - if the rest of us are having spag bol, he has spag with butter and cheese. If the rest of us are having chicken curry and rice, he has the fried chicken cubes and rice but without the sauce, and veg on the side instead of in the curry.

#1 has not gone to uni. He needs to want to, then we'll support him to the hilt. #2 has gone to uni and lifeskills are improving a lot. He still overthinks everything.

I just accept that this is who they are and that they are valid.

My dd 16 has just been diagnosed. I know every single thing about Taylor Swift😖Everything. I know all her songs, even though I’ve never downloaded or bought one. My news feed is invaded by Taylor Swift news. I am constantly reminded of record drops. All the time.

DD11 dx this year. She has a severe dog and bird phobia which greatly restricts where we can go as a family.

The general walking on eggshells - not all the time, but when we know she is likely to meltdown, which is usually whenever we have to leave the house. It just makes the simplest things seem so tense and difficult.

I find myself getting so angry with the autism which I know is irrational as there's sod all we can do about it. When my dd can't get ready for school because her 'brain won't let her' or do things NT children do makes me want to scream at the injustice of it all.

When's she's calm and happy I get a glimpse of what life would be like all the time if she was NT and it kills me.

Autism is NOT a superpower.

Walking on eggshells. Good yeah, you never know if you’ve said something wrong until it starts.

l never want to live through my ASD dd doing GCSE ever again. Dh and l agreed that it was one of the worst periods of our life.

Ds’ issues have made us aware that there’s a few more neurodiverse family members as well. We’re very open about what we find challenging and we work on the basis that everyone needs to budge a bit to accommodate everyone else.

We definitely go out less, do less after school activities, and take life at a slower pace than we would otherwise. But I’m not sure that’s entirely a bad thing. I try to accommodate dd’s desire to try everything (adhd) and ds’ desire for stability and routine and downtime. Probably the most accurate summation is that no one is entirely satisfied.

Ds is very emotionally volatile and I think dd has some ptsd from that. I have something like depression from living with the knowledge that there is feck all support available and it’s entirely on me whether my child stays alive. Its not depression because you could take a pill for that - it’s just that I can’t ignore how shit real life is.

Autism isn’t the problem imo. But the absolute lack of useful effective help and support very much is.

Agree, I hate the twee superpower shite. I understand people want to frame things positively but it's a disability at the end of the day.

DD has just gone to meet friends in town and obviously I'm delighted that she has friends and can do normal social stuff. However the absolute shit show we had with her getting ready, meltdown over clothes and coat and bag, and knowing that her NT friends will have left the house without a care...like you say the injustice is so hard.

I'm so glad I found this thread. The whole thing about your world becoming small has had a huge impact on mental health. Watching the world go by, families having 'normal' experiences whilst we live the same day everyday. I thought I had barely any friendships becuase of me, maybe it wasn't that. I used to love going out, doing things etc

@Discoh yes we have that if she has a play date complete meltdown about that to wear, her hair has to be perfect etc. She almost didn't go last week because she was so distressed it's awful.

I feel trapped too as I don't get to go out at weekends ! She just wants to stay in. She had a play date invite last Sunday but didnt want to go and I was adamant she was going as I was desperate for some me time.

My dd is 17 and going through diagnosis at the moment, so it isn't confirmed as such. She masked her symptoms for so any years and she was good at it, we were oblivious to it. Then she simply shut down completely at 14 and 5m, when I say shut down, I mean shut down, one day she was fine, the next she didn't get out of bed and that went on for weeks and periodically for slightly over 2 years. An absolutely desperate situation and not a day goes by where dh and I don't feel guilt for not doing better by her. Then one day she got up and he been right as rain since, with no indication that she's going to go back. We are enjoying life at the moment and really trying hard not to dwell on it, I'm scared to even think she might lose it again one day, that's a dark tunnel.

She adores her older brother though, they're like chalk and cheese in many ways, but very similar in others. He has OCD but highly gregarious and has a super active social life. DD hates to be touched but DS just ignores that and goes in for cuddles, she doesn't cuddle back but her face lights up, she positively beams.

DD is amazing though, she is intelligent and beautiful, she is interesting and will talk and laugh with us. She has a group of friends who she's had since childhood who, although are the popular kids, have never deserted her, even through the long periods of complete silence, they've just allowed her to reappear without comment. She's now got a bf who adores her, and allows her the space to be herself. I'm in awe of her.

Sorry, I make out like life has gone back to normal, that's not the case. DD has days where the negative side still takes over, but DD is more in control of when that happens. She is a huge scheduler, if something isn't scheduled and on her calendar, it can prompt a shut down, she schedules everything down to hours working out when she should shower. I'm not saying we can't do things spontaneously, we can, but not without a free schedule at that moment or to allow her the time to reschedule something else.

I think she even schedules her shut downs, her schedule is blank leading up to them, she gathers up snacks and drinks, has a brief chat with us and then disappears into her room.