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?

It affects my household she is 17 was diagnosed a few years ago , she is very sensitive. Has tantrums easily. Can shout alot too. Doesn't ever want to go outside the house happy playing on her nintendo switch in her room, hates exercising or using her legs just too walk, is very fussy with food all beige coloured food , hard to get her into college due to her anxiety over socialising

I have three children (14, 12 and 10). Our 12 and 10 year old both are autistic and have adhd. It’s changed our lives so much. My social circle has shrunk to zero, I do work but it’s in education and if for any reason my job goes, I won’t be able to get another one as there’s no childcare for my children and both need supervision. They are both high needs and attend a specialist school. Life is hard. We often have to do different things as our ND children can’t cope with a lot of things. We can’t do certain experiences or day experiences. Holidays are very very hard and I’m not sure they’re worth it. My mental health is poor. I walk on egg shells all the time. I’m petrified of what the future looks like.

This thread makes me feel not so alone. Hugh functioning autistic child here and it can be so isolating. She is hyper sensitive and little things set her off. Some days I feel so alone with the stress of it all. I’m on egg shells all the time about criticising her. It’s very isolating for me

Also my husband is a head in the sand and bright side of things person. I know it could be worse but that doesn’t mean my fears and upset aren’t valid. It’s very lonely. Plus he goes to work a lot so doesn’t see lots. Didn’t even realise until yesterday that my daughter has been hysterical daily about a Halloween party tomorrow that we have now pulled out of.

The loneliness. Never ending loneliness.

@Hardpillow oh yes, the wrong kind of autism!

That's very sad. Would you and Mum be able to come on her own and stay for a couple of days? Would your dad be able to cope with your sibling?

Biggest day to day issue is the sleep deprivation. Average at about 5/6 hours, but sometimes so much less. The meltdowns are also beyond draining. The regression hit me really hard and I’m still processing it (regression just before 2yo, about 18m ago). Have a lot of anxiety about it repeating in DC2, think it might be about to.

i still work full time and my job is important to me, and I try to exercise a bit for my head. Coupled with the exhaustion and the constant admin around therapies and waiting lists and funding, I have basically written off a social life

we are also abroad and moved just before regression / before knowing about the autism, so a practical impact is I think we won’t be able to move from this system, unless things radically improve w language etc

find it so hard tbh! But i cling onto anecdotes of progress not being linear, and people agreeing that 2-3yo was pretty rough.

This is the same for us. It's only when we mix with others that I notice we do things a little differently.

However, I have 4DC and they all get along very well, so our home is harmonious. Of course they squabble from time to time but it's really not often. The others accept DC1 is different and adapt themselves accordingly. DC1 was diagnosed aged 3, thé other three are NT.

For years we could not entertain at home (Before DC we were regular party throwers but DC1 could not cope with people in his space) but we can regularly have bbqs at local beauty spots with friends so we have adapted our plans. We are now able to have a few people over in the home, but we do limit it as this is his home and he needs to feel safe and comfortable.

DC1 is now 13 and whilst somethings are getting easier, new challenges also present themselves. However, DC1 is a very happy soul and whilst rules or routines don't have to be adhered to as strictly as in previous years, we do have to keep him constantly in the loop (and repeat, repeat, repeat things again and again and again. He has a photographic memory but it only seems to apply to things that he is interested in. )

It's all about balance, and whilst we have spent the majority of the last decade fitting everything around daily intensive therapy sessions for him, it's starting to pay off now and the other DC are able to have their needs prioritized as well.

@OnTheBrinkOfChange sadly no, my mum won’t leave my sibling. She’s basically said to me that her, dad & sibling come as a trio. I’m so envious of my friends who can go on days out or even weekends away with their mums. I also feel my mum is missing out on her grandchild.

I have an only child myself, and people always say kids need siblings, being an only child is bad etc. But that’s so narrow-minded. One of the reasons DH & I have decided to stick at one child is not to risk a sibling with additional needs.

An interesting question. I have a autistic, teenage DSS. He also has significant learning disabilities and health issues so it’s difficult to say what factors influence his behaviour the most. But for us it means walking on eggshells, I find that for DSS to be content, every other member of the household has to compromise in some way. We can’t speak without permission - he wants to speak louder, he wants whatever the other children have, we have to watch what he wants on TV, nobody else can hold an adults attention without him detracting it’s back to himself. The moment he’s mildly inconvenienced he starts hitting/kicking/biting us or his much smaller siblings. We can’t eat at a restaurant or cafe, totally out the question. Days out are exhausting and pretty pointless because they become so centered around him that nobody else can deviate from what he wants, which is generally just to eat a certain food (which he’s often disappointed with) and sit in the same spot. He’s very volatile and his triggers have become less and less apparent the older he’s got. I have anxiety and depression because I’m so frightened he’ll hurt my younger children. He gets respite, overnight, special school provision, but it’s still bloody hard work and in honesty I’ve always got one foot out the door. We routinely have to separate the children. His mum is the same, she has had to call for help in a crisis. It’s hell on earth.

The issue with this question is autism is a such a large spectrum and often comes with other diagnoses, so no two experiences are the same.

Oh gosh, I can’t even begin to list the ways. It impacts all our lives continuously.

I am also abroad and I felt like a rabbit caught in headlights when DC was 3 and newly diagnosed. I didn't understand the terminology, the system... nothing was familiar and I was far away from home.

It's not easy, but now I have a bilingual child (he has speech delays but he can understand and communicate in both languages) and he has a lot of provisions here (although insurance admin is a bit of a headache at times).

I did have to give up work because I couldn't handle the daily therapy sessions and work full time so I ended up being a SAHM for 7 years which hit us financially. (I had forgotten this until I read your post.!)

Am now back at work as DC is in a SN school where therapies are done in house.

I am still not sure what happens when DC is 16 but we are starting the conversation...

Sleep... yup. No advice. As long as I got 5 hours a day (even broken, but I needed 5 in total) I could function. But there was brain fog.

Now, they get up and get their own breakfast. Same breakfast routine for the last decade.
I am only woken if they need something and can sometimes sleep in until 8.

Currently about to go through the assessment process for ds 6, as certain as i can be he has adhd as well.
I really feel we are almost grieving for the family life we imagined, ds's needs just dominate every single part of our lives, family time no longer exists, i feel torn in two for the needs of ds and the needs of my other children, they are constantly side lined and the guilt is overwhelming.
Our marriage is as strong as it can be but i miss my husband so much as we just have to muddle through the best we can and thankfully we communicate openly but we can't do anything just the two of us anymore.
It all feels so isolating and lonely, i try my best but it never feels good enough, just waiting on the next meltdown constantly.
Navigating autism is beyond all consuming, didn't really answer the op but today has been very challenging so I'm grateful to find this thread and people who will understand without judgement.

Not diagnosed yet but the walking on eggshells description rings true for our family life with DS, 8. Eg I think a Halloween costume we ordered for him won’t arrive in time (ie tomorrow) but can’t bring myself to tell him because I’m dreading the explosion and temper…and just too knackered. We lurch from day to day dominated by his moods, anxiety and outbursts. Sometimes he’s relaxed and happy and he’s such a lovely boy.

In everyway imaginable and very negative.

Our daughter is profoundly affected by her autism, non verbal, prognosis of never being able to live independently proved correct, needs 24 hours care, help to wash, dress, do everything. The severe end (yes I know to all you with 'milder' autism who feel annoyed by this and don't get it because you can do a multitude of things etc) - anyway SOME individuals are SEVERELY affected by autism and it impacts massively on THEIR life and THEIR capacity to do things. It does for our daughter.

If affected us and our other children immensely. The meltdowns, the violence, resultant trauma, the guilt, the anger, the sorrow and the loss like a death of what might have been and never can be.

I know lots of people love being autistic, brilliant and great for them. However, for some and their families it's not so great.

@Privacyrequirednamechange how old is your daughter

Exactly this. The only time I notice is when extended family/friends comment. He is the only child tho so I think it's easier to adapt to his needs.

That's good to know. My ds is 7 and totally awesome and things are a lot easier than the toddler years! I worry about teenage and hormones tho.

This hit me from another poster:

"Strangers being rude and giving their opinions.
Not being able to join some "autism friendly" groups or activities as the wrong type of autism.
Grief for the future he won't have. Scared to death or the future he may have and what happens when we die."

Yep, I would be a millionaire if I received a payment for every time someone said "I have a friend whose child has autism and they did ABA/this tablet/Sun Rise/X Therapy/ and they are better now....!!!! or my friend's child has autism and they talk, why doesn't your daughter, they can feed themselves, they can read, they are clever, they have a talent (music/maths/art), they can X Y Z or it's great to be different and have autism YOU SHOULD CELEBRATE IT....." My daughter has the 'wrong kind of autism'.

Grief, yes, who will look after her when we die, she cannot live independently, watching care homes/hospitals abuse people with autism/severe learning disability doesn't help...

100%

@hippydyegirl nearly 30

Utterly fucked up mine and DH marriage. DD (adult) was and still is violent and abusive. When she returned home after Uni, everything got much worse.
About to divorce, after 40 years of marriage. Entirely due to the strain of Autistic child and his inability to parent, protect me and set appropriate boundaries

For us the main issue has been the difficulties my dc have socially and how that affects them - it has been very upsetting. Generally everything else is fine but I guess we are lucky that we haven't found their autism to be a negative experience within our family - maybe because DH is also likely autistic and I'm just used to certain things having been with him 20+ years.

Such an interesting thread but it’s so sad to hear of so many families struggling. There should be more support! We have one child with ASD, our eldest and he has totally changed the trajectory of our lives. But I guess any child would have and there have been lots of positives as well as negatives. I certainly don’t give a toss what anyone thinks or has to say but it’s a shame the world isn’t more autism friendly as people have said or even just more autism aware.