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?

There’s so many places we can’t go because of my daughter and I feel sorry for my other children missing out.

My younger daughter has a diagnosis of PTSD and I have mental health issues that can be directly attributed to the lack of support we got as a family through the teenage years

Eldest with asd now has moved out and is doing very well but I still keep moving at a mile a minute because I'm so used to living on my nerves that I'm afraid that if I let myself relax then I'll stop and never get going again

I separated Friday m my children's father which may have happened anyway but parenting a child with 'high functioning' autism definitely put a strain on the relationship and he wasn't able to maintain a relationship with our dd once he moved out so I've been going solo since she was 8

Simply, my autistic child cant cope in a neurotypical world but the rest of us can cope in an autism friendly world. So we have restructured everything to be as autism friendly as possible. Where we live, what we eat, how we eat, how we work, our leisure activities. But we dont really notice.

My daughter's likes and dislikes definitely did dominate our day to day life. I used to challenge her behaviour as a child (she was diagnosed in her teens), and her dad used to challenge me. It eventually split us up. Post diagnosis life got much easier all round but what we ate and where we went all focused on her. She's at uni now and it's nice to suit ourselves. Her brother is really blossoming having her away too- he has more decision making power and the lack of stress is a real bonus!

In our household we have 2 adults with asd, and 3 dc . It is a relentless task to ensure all needs met, all triggers avoided and each Individual is very different so it’s an immense juggling act. The hardest thing I think is cooking about 3/4 different meals and everyone eating separately

We end up having to split the family in two, with our staying home with dc1 and one going out with dc2 so that dc2 doesn't miss out on things like day trips or seasonal events because dc1 can't cope with the noise. He doesn't actually have autism but does have adhd and is sensitive to too much stimulation and becomes very anxious.

*3 dc have asd as well as the 2 adults one of which is eldest dc

It's bloody expensive! Absolutely no services seem to be available unless you put in so much time and lobbying, you might as well have paid in the first place if you had the money. We've spent £5k in two years on diagnosis and therapies.

It enrages me on behalf of others that there's so little state funding support and families (well, usually mums) are just left in crisis.

The theme of marriage breakup is very common, also estrangement from extended family.

It doesn't really but our entire house are neuro diverse.

Only thing we tend to avoid is busy places!

It makes our world very small especially given the fact that due to his anxieties going out other than to school and one or two safe restaurants is exceptionally difficult and very rare.

Our house is a place of structures and familiarity where we all thrive. Our child shares their extensive knowledge around their special interests with us and we learn something new every day from them. Their insightful takes on the world are refreshing and fascinating.

Even as a teenager, they like to talk to us and spend time in our company as well as time in their room which is a place of comfort to them. They are smart, funny and I wouldn’t change them for the world though I would change the world for them at times.

Hopefully someone whose child has recently been diagnosed will read this as a counterpoint to some of the posts above (which is not to deny your experiences, just that it might not be theirs).

@FellowClassicsMum I totally agree.
Mine are older now, hairy moments at times when they were younger, but they do get to a certain age when they make sense of the world, even if they can't fully participate.
The special interests & research into things that fascinate them are amazing, and yes, they are smart & funny! :-)

My daughter says she didn't realise how very much our household centred around her brother's needs, and how much we didn't do because of it, till she left for university. 'Other families just... go out for meals! People just make plans and do them! They say yes to stuff and see how it goes when it happens, and invite people over, and cook new recipes, and redecorate, and have parties...'

We were overdue a bit of teenage criticism for our crap parenting skills, I suppose.

Constant restrictions and constant anxiety. Me and ds2 are autistic. He's 18 now and I'm exhausted with the constant effort of trying to guide him towards some kind of independence. I dunno what the future holds. Medication helps me through on a day to day basis, but I'm apprehensive about the future. I doubt he'll be able to hold down a full time job. Perhaps part time in a quiet, structured environment. I don't know if any help is available though. I'm constantly tired and in pain.

Our children who arent Autistic are growing up with a deep understanding of the real meaning of inclusion and diversity, learned from their brother.
We work every day oitside of the home to make our community an accessible place for all, not just those of us that happen to be neurotypical.
We know so much about dinosaurs, trees/nature that we likely would never have learned if he wasnt Autistic; he has amazing focus on learning.
We certainly have struggles. Planning activities around sensory needs and making sure theres always chicken curry available wherever we go (its the only, sole food he eats breakfast/lunch/dinner) etc but overwhelmingly the positives outweigh the tough times.

We all walk on egg shells to keep dd on an even keel. Although it seems futile at times as she'll kick off whatever.

We used to have to travel in 2 cars otherwise she'd be knocking 7 bells out of elder dd in the back.
Every single family outing has been ruined, meals, days out, family get together. Now she is old enough to decide whether she comes or not. She usually doesn't.

Hugely is the short answer!

That's not to say life is over though, we just have had to develop our own approaches ...

In our case this means we almost never schedule or agree to any get together or commitments on Saturdays as our DC just simply needs that day to unravel from the long week at school. It's a down day usually of crafts and sensory led home activities.
"Busy" places such as shopping centres , theatres (working in this), are generally avoided as it never ends well.

"Spacing" social events during holidays-never book two consecutive days in a row of play dates or day trips as it takes a good day following the excitement and overload of a day out and a flat day at home is always needed. This makes family politics regarding Christmas /Easter and two sets of grandparents/extended family challenging but we manage better despite some eye rolling from certain family members.

Restaurant visits are chosen carefully:lighting/music/tables too close together generally make a bad recipe and we have to ensure that the limited food choices of our DC are accessible. We don't often go out to eat but a bit of research helps ahead of any dinners out.

Wherever possible I do grocery and basics shopping online it's just a timesaver and so much less stressful for all. Only embraced this in lockdown and it's still a revelation .

The relentless bloody appointments/paperwork and battling:
This has to be done during school hours/in the dead of night which is challenging with a child with night time care needs.
My to do list coming second/last in household priorities. DP wfh and regardless of how I frame requests state the bloody obvious it's alien concept to him that anything might come before his work or that DC actually need supervision whilst I'm "working" on this stuff. Anybody who tells you this stuff isn't a full time job doesn't know-it's he'll at certain points of the year and it's a continuing bugbear for me that absolutely all household chores, admin, family arrangements, SEND/Medical battles are all expected to be fulfilled by me and that sadly no sod ever provides me with a holiday request form. Never occurs to DP that he might take leave during school holidays it's infuriating but I've no choice.

"Other people": I've now reached a stage where I've accepted birthday invites are not mandatory. Sometimes it's just too much to fill each weekend with parties and the inevitable fallout they bring. So we now keep a close circle of friends who not only understand our limitations but are not offended if we need a quiet corner for ten minutes or need to bail early.
Stopped caring what other people think years ago and it really helps sanity levels day to day! Fact is we have to make decisions based on DC needs and sometimes folks are brilliantly understanding, others are less so and in those instances if appropriate I do my best with gentle explanations, how people reciprocate can be unpredictable, quite surprising/sad/disappointing/delightful.
Having to sometimes explain to immediate family members why they can't just pop in with zero notice. This causes a great deal of upset and explanations but is vital to our DC well-being.

Isolation/independence:
Having been forced to forfeit my career years ago (right decision for our household but I really do miss working it's so hard!)
Accepting that my own social circle has almost completely diminished. Very few "get" why I cannot just meet up for coffee/lunch dates, gatherings etc as normal. I now lose myself in books and research as aside from maybe 3 good friends I accept for however long needs to be the case, I'm kind of on my own but I've made my own peace with it now.
Developed rhino skin to all the ignorant and judgmental comments from various sources- I'm just too busy to care anymore.
It's taken us a while but we now have workable routines that bring calm and happiness to our DC, we embrace anybody willing to accept this and manage our best when we can with those less accepting.

Adult sibling (suspected autism, not diagnosed but I’m as sure as can be without a diagnosis). Means my parents can’t come & visit me (a visit entails an overnight stay) without my sibling. Whenever I visit them my sibling is there. So basically it’s materially affected my relationship with my parents. I can’t do stuff with mum on my own which makes me sad. I also worry a lot about what will happen when parents no longer around.

Obviously my parents lives are heavily impacted.

Suspect my dad is also autistic (again not diagnosed) and I could write an essay on the impact that’s had on me over the years.

My two ASD-ers are adults now.
One is independent ('high functioning') the other is likely to always be dependent on us ( some independence but can't live by himself, special schooled etc)

When they were smaller it affected us more.. DD1 was anxious, quite difficult to live with, had many emotional difficulties and things had to be just so. Her inability to eat many foods (or have them touch) her hypersensitivity to everything, which later descended into anorexia... difficult. Always single minded.

However that same single mindedness has made her into an amazing doctor and because of her autism and anxiety she is very very caring and sensitive to her patients' needs.

DS2 , more 'disabled' on the surface but actually happier in his world and his obsessions , and didn't /doesn't need the social network NT people generally do.
Medicated for OCD and anxiety from aged 16 and has developed much further than was predicted.
However he is very repetitive, routine bound and obsessive and it IS wearing to live with... and with the knowledge that I have to live forever to care for him.

BUT... his autism has steered his siblings careers (and mine!), has given us true friends via support groups, that we would never have otherwise met. He is also a kind, gentle, lovely young man. He loves and is loved... I would not change him for the world, and his Autism makes him the wonderful person he is.

I work with young people at the most disabled end of the spectrum which makes me grateful that I do not have to manage severe behavioural challenges at home.

Having two (of 4) children with autism has been difficult at times, wonderful at times and just 'how it is' at times!

Our dc was diagnosed at two although we were told clearly by profs before 18 months. He's now 12.

House:-

We moved to a larger house so we could have a well equipped sensory room for him. Used dh redundancy pay for equipment and installation.

Conservatory is husband space with large dark den, trampet, toys, etc

Garden, adult sen swing, taller fencing, no berries on plants which can ge eaten. Very secure gate.

Dining area, lockable stable door installed to stop access to kitchen but allow person in the kitchen to see/ hear dining area. Special seating at dining table, other dining chairs replaced regularly due to be broken. Redecorating walls regularly due to food, drink and being knocked.

Living room, toys aimed at pre schoolers which live in certain spaces. Gass door removed and replaced so it wouldn't be a danger.

Downstairs loo, wet room area with changing facilities.

His bedroom, everything attached to walls fir safety, plug sockets covered, window specially covered do it can't be climber on, special door, special light switch.

Visual prompts and timetables all over eg how go wash hands.

Alarms on all external doors so we know even they've been opened but they dhould be locked at all times.

High use of tech as was at one staged used for aac for communication.

I gave up work as it was impossible due to lack of sleep, appointments and inadequate childcare.

We're able to go out as a family and go on holiday etc but limited to activities which we can all access and enjoy. Mainly theme parks.

Cost for therapies, reports, tribunals and pre action letters.

Time/stress, fighting for education, social care etc. Impact on family relationships.

Loss of some friends who don't understand. Made some amazing friends who also have dc with autism or other send.

Constant noise in the house due to vocalisations.

Limited time on my own with dh but incredibly strong relationship, we lean on each other.

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.

Developed a really dark sense of humour and can quote 9.69 of the sen cop verbatim.

#conservatory is his space not husbands

My brother is autistic, but all my siblings and dad have other conditions and disabilities, so its not always easy to say which part influenced certain things.

As kids I was very aware our family was nothing like my friends. And a lot of things were different that I didn't notice until I left home and started living differently.

As far as impacts on everyone, we were, because we had to be, very chill accepting kids so none of his specific behaviours were a big deal- we just lived in an autism friendly way. We spent most of the time as a family group- usually somewhere in nature where its quiet- so as adults we all like the outdoors a lot and all prioritise family time over 'fun places' like cinemas, funfairs and soft plays because we never went there as children.

Personally living with my brother made me very good at my current job, I work with children with disabilities and a lot of it comes naturally now.

I think it also made me a better mum than I would have been, not just because I learnt a loot of tools to be a good caregiver, but also all of the difficult things in our shared childhood made us very close as a family. So I get to bring my children up in a close very loving and accepting family, where there are a lot of differences that they can see and learn about, so hopefully my kids will be kinder and more accepting than the children and adults who were cruel to my family when we were kids.

Undiagnosed teen here. I basically go nowhere, can’t work and have zero social life. I can’t work as she isn’t attending school.
DH doesn’t appreciate his freedom. She has severe attachment issues with me. He was complaining again last night that we don’t eat together, but she has a limited diet and eats very early.
we do try and go out or go away, but often it’s a waste of effort/money.

@AutismHousehold

Plenty of prompting and encouragement needed around brushing teeth, changing into pyjamas etc.

Have a look at www.twinkl.co.uk/ form lots of printouts, some with pictures, or you could make your own with DC's tasks in order and a chart they can tick to say the tasks have been done.

DC can get extremely irate if routine or plans change.

Changing from one activity to another is called a transition. Worth reading up on.
Kids don't have a concept of time so saying, 'In 5 minutes I need you to ... ' is nonsensical to them.

Buy a countdown timer, as simple or complicated as you think they need to signal an activity is coming to an end.

It can be helpful to use 'now, next and then' type instructions and keep them simple to the activities in question and keep updating as the day goes on.

Now, we're eating dinner, next we'll go to the toilet and wash our hands , then we'll go out for a walk.

Slowly (and it is a very long slow job) over time you can build in variables to the now next and then instructions which take into account plans changing at short notice.

Now, we're eating dinner, next we'll go to the toilet and wash our hands , then if the weather's fine, we'll go out for a walk but if it's wet, we'll do [name alternate activity] instead.

Eventually your child will understand that plans they are expecting can sometimes change at short notice, but because of all the work you've put in reassuring them that a different activity can be available to the scheduled and expected one, they can cope much better.

Another thing you can work on is managing your child's expectations. Very often their expectation of a visit somewhere is very different to the reality. If you outline some of their likely challenges and your expectations of their behaviour immediately before you visit, you stand a better chance than just dealing with their reactions you'd not envisaged on the fly.

Don't expect instant improvements, just take each situation as it comes and afterwards if it's not gone well, wonder if you could have prepared your child any better to deal with it and do that next time.

When you receive the diagnostic report, remember it's not their whole character described there, it's only the bits they need help and interventions with.

Read this, it describes so much about sensory behaviour.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

Browse here for loads of helpful strategies
www.theottoolbox.com/

My DD is adult now and I wish those resources had been available so many years ago.
Now, she's happy and living at home. She has CFS which she says is way more debilitating than her autism. See 'spoons theory', most days she gets up with only one or two, mostly it's none.

Our house is adapted to help her cope, the lounge is like a safe space sensory den, but bigger, filled with her favoutrite calming things, soft furnishings, throws, soft toys, rice lights, sparkly things, TV, ipad and phone.
Visitors stay in the kitchen and chat to me there, if she wants to she wanders in and chats and then wanders off back to her safe space when she wants to.
Food, no 'fussiness as such' but has sensory issues with anything slimy and unfortunately lots of food intolerances which she hates as she'd like to try many more things.

She can't be left on her own, can't answer the door, can't answer the phone.
On a very bad day, if she has no energy or acute anxiety and there's no-one to sit with her and that's 99% of the time, I take her to the shops with me, leave her in the car in her pyjamas with her parka on top and run round to get the essential thing I had to get, then we go straight home. She's assessed as only being able to walk 25 metres without discomfort and has a BB and PIP.

On a nice day if she has the energy she likes to photograph the flowers in our garden, she's very good and I'm looking at wys she can make some money from that. (all ideas gratefully received by pm please)

Sometimes her CFS stops her doing even that, some days her anxiety stops her doing that. On days she feels up to going out, I have to be prepared to drop everything and bring her home when her energy runs out or when her anxiety is overwhelming.

It's an interesting question OP. We have DS(6) who is ND and the rest of us are NT. Reading the above replies, I actually don't think it affects our family much in a negative way, though it does make the sibling relationship between him and DD(8) trickier to navigate - especially because she is incredibly mature, and he is not (he has a diagnosis of ASD but I think he also has ADHD), and also because I think at times I expect an awful lot of her. (I am aware of and working on that.)

The positives - DH and I have learned so much from his special interests. He is indefatigable which means he is the most amazing cycling/hiking/skiing buddy. He experiences emotion in a completely unadulterated way - which can be heart wrenching, but it can also be utterly, utterly heartening.

I took the kids to the beach this week and the NT pair had a perfectly lovely time collecting shells and writing in the sand and so on. But DS ran down to the waves and jumped up and down and flapped his hands and whooped and when he turned to look at me, his face was just pure joy. He loves the feeling of cold wind on his skin, and when I see him outdoors, in his t-shirt and shorts on a freezing day, playing in the surf or rolling down a hill or swinging on a tree branch, he just looks so completely in his right place on this earth, and it calms and delights me in a way that I cannot really put into words. When I saw that short film Float, I cried so much, because that's him - he really does float.