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 can so relate to this - in fact I could have written it.

I don’t know anybody else who has had to give up work because of autism. I always think people think I’m just making it up - but yes my son is absolutely done by the end if the school day. How old is your son @BogRollBOGOF ? Mine is 10. Emotionally about 6, intellectually like an 18yo.

it’s very hard parenting somebody at those stages of development

Hi everyone

I sat and read each and every single post and it’s made me feel a lot less isolated. When I’m facing a battle at home, I always feel so alone and like everyone else family life must be so much easier and better than mines. After reading everyone’s highs and lows it seems we are all in this together. I appreciate you all sharing.

Can anyone tell me if these are all normal ways to be feeling and if there are any tips to combat these issues?

1. I dread 3 o’clock when DC finishes school and I know the war will begin between them and their sibling.
2. I feel anxious around DC even when we are having a great bonding experience or doing something fun, it’s like the anxiety is just programmed within me and switches on around DC due to all the things that triggers them
3. I’m always on watch like a referee, struggle to have any downtime as my mind won’t relax until DC is in bed
4. I feel gaslit sometimes, I could be saying one thing and get accused of meaning it in a totally opposite way
5. DC can be manipulative, I love my child but how do I stop this as it’s not right

This post has been a real comfortable to me. With two severally disabled children, my world is very small. I spend a lot of time dreading dealing with the kids when they get home from school. Simple necessary things are a huge battle. I’ve spent the last 13 years of my life feeling utterly exhausted. Everything we do is a military operation and I feel broken. Husband is good but doesn’t really deal with the day to day. I work full time as well and last week was asked how my half term was by my colleagues. I can’t begin to tell them how hard it was. I don’t even feel like a person anymore.

@Lindengericht I thought I already replied so sorry if I'm doing that twice but I couldn't see it...

Interesting to hear about your experience also with being abroad. Did you plan to stay where you were or did the SN system impact that? It just seems when you get your head around one system / get through the waiting lists that it would be totally daunting to do it again in another country. Even without language considerations.

Great that DC is now bilingual, I find it so hard to picture DD even speaking one language from where we are sat now. Was there a particular age where things moved quicker with the language?

Thanks for sharing your experience, also on the common ground. It really helps to hear from others who have been through similar.

We try to give extra time, space and resources to the NT DC to make up for the difficulties that come from living in a ND household.

Hello!

Although we planned to be in here for a long time, I don't know if we would have stayed quite so long. Available services vary so much from region to region here, let alone in another country. So yes, that definitely impacted on our choices, but not in an unhappy way. I was recently offered a job in Berlin, and whilst I would have seriously considered it before, given the situation, it just wasn't even an option.
Speech acquisition was slow and gradual. There has always been a delay, in mother tongue and then second language development followed the same pattern. But he communicates well enough now,has school and friends in the second language and English is only really spoken at home. Recently DC has started taking the train to visit a friend, which has had my stomach in knots.... but I have had to let him try it and when there was a problem he handled it very well.

I also could not have even imagined getting to this stage when DC were younger. I remember when he was diagnosed ages 3, in my head I thought with the early diagnosis and daily therapies, we would have it cracked by age 8.
And of course when he turned 8, I realised that this was our lives now.

I am not sure if he will ever live independently, I can't envisage that at the moment as we have only just mastered making toast. But he is lucky in that he has 3 siblings who all love him and I hope that will continue into adulthood. That has also definitely contributed to his development, in terms of language and other skills (they showed him how to ask for things and also, we all tried everything to get him to put weight on his feet, to stand up and then to walk but he just refused. Then his younger sibling did it, and he started to copy!)

I do remember that when we started doing the therapies, the school teachers all insisted that I had to find English speaking therapists as we are anglophone. However, the autism specialist encouraged me not to do this, and she was correct. It helped with communication between teachers and the other therapists, as well as language development for DC (which of course means integration into community).

Try not to worry too much about the future (this is something I always tell myself, but I know it's easier said than done) as the worry will only rob you of any joy right now.
But, ime, putting in so much effort into the early days has reaped benefits ten years later.

Feel free to DM if you need to chat privately.

Very timely thread aa yet again DS1 not coping at college so numerous emails etc to try and sort it out.

Meltdown all evening.

Really not what l thought l would be dealing with when he is a 19yr old adult.

Constantly walking on eggshells! One minute my dd 10 is sweet and loving then out of the blue she kicks and hits. Very hard.

How can siblings be protected? It isn’t just the missing out on things and the need to prevent harm (my brother would kick harshly if I looked at him on car journeys, etc, etc), but also being scared by the dynamics in the family. Parents not being in denial is super important, so the child with ASD can get help and any others have some understanding of why things are the way they are.

Thank you for starting this thread.
My child is very newly diagnosed with 'Asperger's' type asd.

I completely get your position and the irate factor is a big thing for my child which in turn is really hard for younger sibling.
Fighting with siblings as they are constantly triggered by them. Younger one seems to think winding up older one by doing said triggers is funny. I've got a lot to teach.

Walking on eggshells- agree.

Let's just go for a meal - no way. In fact going for any meal is tricky. Going anywhere is tricky x 1 billion if it's somewhere new.

I'm a bit envious of all these posts where there is a chance to 'split the family in half for days'. As a single parent doing it alone I can't do that and so deeply sad for the younger child.

I'd appreciate a support thread. Not so much for the negatives but for the hints and tips.

I'm drowning in the rights and wrongs of letting child get away with stuff due to the asd or is it just normal child stuff.

to everyone who needs them (they are the non smelling, non dying and definitely won't drop stamens in the floor to irritate anyone !)

This is one of my biggest questions and so important to me to find an answer.

Your comment really resonated with me. My teenage daughter hasn’t been diagnosed yet, but we highly suspect she is on the spectrum. I was only saying at the weekend how we are so restricted with our activities as a family due to her anxieties etc, and it can be tough 😔

I'm sitting here while my dd 10 is crying, screaming, kicking me because she has to get ready for school. Every morning is horrendous. I'm at my wits end and don't know where to turn. The school can't see a problem because she masks. The teacher has had a word with her about getting ready for school and thinks that will solve everything, they have no idea !

Siblings being affected is a huge issue. My daughter (10) is being assessed in February for neurodiversity. I suspect ADHD or ASD but possibly it's anxiety induced by the trauma of growing up with her older brother (12) who has ASD, ADHD.

Our son's paediatrician and psychologist have both stressed the need to have strong rules and consequences against violence (verbal and physical) in the house. Everyone in the house has the right to feel safe. We enforce this but it is difficult. We were recently driving home on the motorway from an hour at the beach and our son was kicking off. So much yelling, threatening suicide, saying horrible things. We're trying to calm /appease him - difficult to enforce rules while driving at 100 km/h and trying to remain calm yourself. Our younger daughters (10, 8) are stuck in the car listening to this tirade of abuse from a 12 year old. It's so unfair for them.

We do speak to him afterwards when he has calmed down and he does apologise to us and his sisters. But I think the impact on our daughters is traumatic.

Here in Australia there are family camps for families with autistic children. There is a real focus on the siblings. I'm really hoping to attend a camp soon - it would be hugely beneficial for my daughters to meet other children with similar experiences.

The siblings issue is indeed so tough. I find myself wanting to give DS2 another sibling because DD1 is so difficult towards him. However I also know that's a bad idea just because we are really so stretched in terms of stress and sleep, and also the risk of ASD in another baby does worry me. Does anyone find themselves thinking along these lines? Even though I probably only ever wanted 2 kids I have it in my head now that the door is clsoed to another and I find it hard to make peace with that

Awareness and acceptance is definitely good, but it wouldn’t resolve a lot of the issues raised on this thread. Most of the issues relate to day to day self care, the constraints on care givers and their liberty and the autistic person in the home.

This is something I struggle with when discussing ASD. It is such a board spectrum and I always get someone comparing DSS to someone they know with a special talent. DSS can’t pour himself a drink or take himself to the toilet, he needs 24/7 supervision and help with every element of self care. In the most part awareness wouldn’t really assist. His triggers for violence are now so broad that it’s a real struggle to manage his environment and safeguard others, especially his siblings.

Not to have a go, but sometimes I hear of ASD children and think wow, if only!

Both my siblings have asd. My brother has a diagnosis, my sister is just now going through the process in her 30's - both have the same presentations.
My teenage years were very difficult both my brother and sister were school refusers - we always had social services turning up at the door and it meant that I also missed a lot of school due to the stress. It left my mum suicidal at times - I remember her telling me when I was 14 that she was going to walk out in front of the next bus as she couldn't cope any more. We got through those years some how but it's all a bit of a blur.

My brother now in his 40s is doing well but desperately wants a partner but has no idea how to approach anyone, sadly I don't see him ever over coming this and it breaks my heart.

My nephew is 7 and in main stream school but struggling as he doesn't get the support he needs. Whenever gets overwhelmed he runs - across the play ground, into other classes, climbs out the window, And when he can't run he bites or scratches (himself and others). A class room is just too stimulating. He can't read or write at all.
Out and about he has to have a clear focus and if we go anywhere that's crowded he tries to run - into traffic, into strangers, into the sea. He also trusts everyone and doesn't see danger, he will ask strangers for hugs and kisses, try and stick things into electric sockets etc
He really is a gorgeous and loving boy but it takes 3 adults to take him out anywhere and can be exhausting for everyone.

I love them all but it has been a struggle.

We are all ND here, (2 teen kids) this can present its own challenges but in general we have worked out new ways to do things.

We adults often holiday alone to get a break- we need one from responsibility but the kids can't be left even though they are teens.

I work flexibly so I can be around for them, and I can't cope with FT myself either.

They don't attend school full time, cause its just not designed for ND kids and its too much for them.

We choose places to eat our that are quick and informal, we let the kids go for walks outside rather than making them sit the whole time.

We solve problems together and often use the "if you had a magic wand" type conversations to brainstorm new ways of doing "normal' things.

We let go of all the "shoulds" and just try to do what makes everyone feel comfortable and happy even if it seems weird.

We don't spend time with friends or family who don't "get" the way we need to do things.

We don't make them do things they don't want to do unless it's VERY important. So medical/ dental is not optional, but hairdresser/days out are not compulsory, if they want to chill in their rooms all the time thats fine. Giving them that freedom, time and space meant they came out to do stuff when they were ready and both now engage in hobbies and friends in a way that works for them.

We take a kid each sometimes, fairly big age gap so that has always worked well for us.

Things got infinitely better round here since we let go of trying to make things work in the traditional way, that led to a lot of anger, violence and hate (from them) and frustration and sadness from us. It's all pretty mellow now. Years ago I thought they'd never be independent but they are great little chaps now and I can really see a decent future for them, having grown up knowing how to advocate for themselves.

Ds1 is autistic and has also adhd. He is sweet, funny, kind and loving at times but is he is also very controlling to the point his younger siblings can’t play with there toys in there own room without being critisced. He is also violent, abusive and bloody hard work. His outburst upset the whole family. Just about everything is a drama and he only ever sees the reaction someone gives not the action he has taken before this.

For example he hits ds2 after goading him, putting him down and making him feel worthless. If ds2 (4.5 years younger) hits back ds1 and doesn’t get into trouble as he has hit him in retaliation for being kicked, hit and bullied he feels that he is the victim. DS1 has to get revenge for stupid things and never sees the bigger picture. We tend to split up and one of takes the younger neurotypical kids to things they enjoys. Ds is always invited but often doesn’t wants to go. He hates changes, new things, has food sensory difficulties so eating you, family trips are difficult and holidays are hell.

He can have the whole family incredibly distressed with his behaviour towards us all and even when it’s explained to him still not believe that him hitting or swearing will cause a reaction.

I love him dearly but he exhausts me and our home is quite and peaceful and his siblings calm when he isn’t here. We do have lots of accommodations and adaptions to help him but I actually think part of this is his nature as his grandfather and uncle have similar natures. He is also emotionally very young. He is 10 but his 3 year old and 6 year old siblings often seem more mature emotionally.

Ds1 also has to be parented very differently to my neurotypical children. For example my other kids eat whatever dinner I am cooking but ds1 is given what he wants as he has very selective eating and is under a dietician. He also gets iPad time used as a reward. He doesn’t come shopping with me except for his trainers. I only buy certain brands of clothes for him. I let him decide if he feels able to cope with certain situations. School is not optional but if he didn’t want to go to a park as it was busy I wouldn’t make him.

I would also add I think my 2 younger kids have been massively affected by ds1 being autistic. My middle child in particular has developed anxiety due to ds1 behaviour towards him and has had to get play therapy etc. However they have also developed a level of of understanding that other kids don’t have about additional needs and my middle child is very helpful to children with additional support needs.

Posted earlier on growing up with a brother who very likely had undiagnosed ASD and the harm to all the family caused by parental denial. These are some of the issues I think may have helped:

Acknowledgement and transparency is very important, as the alternative can be fear and shame. I don’t think our family can or will recover from the hugely stressful situation we lived in and the inability to question any of it at the time.

Professional help to understand and be better (even where triggering behavior was unintentional) towards a sibling with ASD.

Professional help to deal with the psychological harm, as the anxiety generated is significant and endures.

Strong boundaries around violence. Don’t underestimate how intimidating a teenage brother can be.

There does not seem to have been a lot of work done on the impact on siblings, though there are some studies. The area of discussion/study does not seem to have made it into mainstream discussion. This journal article provides a review of studies.

“A systematic review of the experience of being a sibling of a child with an autism spectrum disorder“

Lucy Watson, Paul Hanna, and Christina J Jones

www.ncbi.nlm.nih.gov/pmc/articles/PMC8264626/

@Underthesea7 strong agree. I grew up with an autistic brother who was very much older than me and quite violent and aggressive. I wasn't protected and if I got upset was told 'he can't help it'. If someone outside of the family had behaved like that to a much younger child they would have been in trouble with the police.

It takes a lot of time and space to heal as an adult.

I live alone with two adult dc who have autism. It's calm and quiet and well ordered here because it's an environment they both thrive in. They love each other probably more than they love any other person. They are kind and considerate of each other's needs where they probably don't consider me or mine at all. I am the fixer and the facilitator which I find quite wearing tbh.
It definitely doesn't feel like three adults sharing a house and every day is like Groundhog Day as the routines and order that keeps them calm and happy is really tedious even if I can do it without any thought.
Neither of them really talk in so far as they run through the same scripts prompted by the same routines every day so it's a pretty lonely existence if I'm honest but my older dc come back regularly to see me and their siblings so breaks up the monotony somewhat.

@Ohmygoshposh & @Namechange636467727

I can very much relate to your comments.

I think being the sibling and/or child of an undiganosed/or diganosed very late adult is very hard, because you don't even have that understanding of why or what is making them so different.

I went to school in the 80's & autism was never discussed, it was as though it didn't exist and so I couldn't understand why my Dad & my brother were so different to my friends Dad's siblings.

Autism has had & still does have a huge effect on my life.

Autism doesn't go away when people become parents & then grandparents, the effects are just more entrenched due to age they and reverberate through the next generation.

I'm very fortunate in that my DD is NT but she has an autistic Grandad & Uncle who have never shown any interest in her or wanted to spend any time with her and this has been very hard to take.

I hope that for this, and the next generation things will be better, with early diagnosis, better funding and interventions etc..

I've only just seen this thread this evening & it's been very interesting and enlightening.