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?

@Lindengericht great to hear your positive experiences on both the sleep and bilingualism. I am at a stage where I just cannot imagine DD speaking but I know I should be patient and assume competence etc

thanks for sharing your story

A neighbor of mine was talking about her situation. It's made things difficult for her younger son, who has to tiptoe around big brother, can't make noise in the house, can't have friends round. He (the older brother, now 19) won't move out, won't live in uni accommodation, the family can't afford to support him in a silent private flat of his own which is the only thing he'll accept, so they are stuck with him at home. Neighbor has to constantly be in touch with his university sorting out issues. He is academically talented but cannot cope easily with the back-and-forth of communicating with professors, discussions, things like that.

A friend of mine has a 20yo son who is severely disabled, and I can't even imagine how hard it must be.

yes I think this is similar to us. Ds is gradually becoming more adept at the NT world as he gets older but the adaptations we have made for him are by now so much second nature that we pretty much don't notice. Until you get a glimpse into other people's lives through playdates or parties (rare though they are for us) and you see that no not every family is so deeply constrained by what they can and cannot do. It's hard to explain with concrete examples I guess because it developes organically. (DS is nearly 13).

I get enormously sad though sometimes when I realise what DS is missing out on. He cannot cope with several of the amazing extra curricular things the school puts on (like theatre, or sailing, or camping). His NT friends seem to have a much more - I don't know- fulfilling childhood? We are just getting by day by day in many ways.

I really dislike the blanket term ASD.

But anyway, my DS requires 24/7 supervision and sleeps for 3 hours a night, max. He also has ADHD I think but the diagnosis is just profound autism. He smears his nappies contents, wakes at 3am, can't speak or understand how to request something simple like a drink. Can't communicate where he's in pain etc. complete flight risk, roads are so dangerous as he would just run off unless constantly restrained. He bites and hurts. All sensory related instead of anger so very hard to combat - he just likes the feel of skin!

One day he will wake up and I'll be dead, just like we all will be. He won't know where I've gone. That breaks my heart so much, I can't even begin to put it into words

It's a living hell most of the time. I love him to bits but it's no life for him and it's very very sad.

I have what use to be called Asperger's and he's nothing like me. I am certainly not severely disabled and it's wildly inappropriate to think we have what would be the exact same diagnosis now (The DSM-5 no longer distinguishes the reality of different support needs of the person with autism).

Oh yes the special interests!! Currently it is roblox which I am drained by but my goodness have I learned wonderful things about the Titanic; about the development of various fonts and type face; the film Frozen; 1980s music; wild fires and their causes and environmental impact etc; the social and historical development of the purse. It's fabulous! I love hearing about special interests and adore how apparently random and fascinating they are.

I really agree with you @singlemanreadymealplan that the blanket 'ASD' and the removal of Aspergers as a term has been really less than useful. And nonsensical in so many ways.

to you. It is so hard, i am sorry. xxxxxx

I hear you OP... DS has Asperger's, ADHD and a whole array of comorbid conditions. He turns 18 soon and whilst in mainstream education will only be an adult in age (not mentality). Top tips that have got us this far include:

Look after yourself as a no1 priority. This needs to be done so you can look after your DC. It could be time out / away, antidepressants, or a quick face mask. My point being everyone's needs vary but all needs are important.

Don't berate yourself or question your parenting abilities. If you do things with the best intentions at heart (regardless of the results) then you're doing a great job.

Go out when everyone else stays in (for a calmer and less stressful environment) and vice versa. This usually means outdoor activities in bad weather and indoor activities while the sun shines - but, personally, it suited our family.

Make friends with other ASD mums - even if it would appear that you are poor opposites, you share a huge common denominator. That can be either in person or online. Seek solace in the fact that you are definitely NOT alone.

I've been pleasantly surprised at the 'hidden' support available - those other ASD mums are a huge help with this.

Make time for both your DCs separately if you can. My DD has definitely resented her brother and his disabilities over the years - part of the territory. And it has been utterly shite at times (breaking point shite) but now that they are older it has improved.

Hope some of that helps?

I was desperate to got back to work but I can’t. My son is completely burnt out after school and can’t even manage a play date or activities. He has to be at home with his books etc instead.

He is off sick a lot - he has a terrible immune system and he’s a fragile little thing despite a big and engaging personality.

but he has taught me everything I could wish to know about clocks, architecture, geography…….

In so many ways it's hard to list as it's just our lives now and hard to imagine how it might have been without autism.

We are also on the severe end of the spectrum. Not the gifted end. DC2. Non-verbal, needs the level of a support of a toddler with everything, aged 8. I cannot see any possibility of independent living.

Impacts on us as a family. We do a lot separately. Take it in turns to do activities with DC1 so they don't miss out on a normal childhood. Strive very hard not to let them become a child carer in any way but it undoubtedly has an impact.

Moved - where we were just didn't have suitable school options so made a big move to another area which would not have done otherwise.

Careers, good and bad. Mine has taken a hit as spent longer at home than planned and now I am back but necessity of being home (DC2 attends an excellent SEN school but wrap round care not possible) limited options and I earn a lot less than I used to. The good thing about careers is now that we both wfh DH and I have been able to carve out some time for ourselves which keeps our marriage strong as we have reached a stage where the grandparents can't babysit any more so we have no time alone other than school hours.

At home, so many adaptations, like extreme toddler proofing. We get off a lot more lightly than other families I know of autistic kids (a classmate smashes their telly on a regular basis) but there is more than your usual wear and tear round the house, again cos DC2 behaves like a toddler but is 8! I tell myself that's part of what DLA is for, joiners and replacement furniture.

Fear. That's the biggie. It took a few years but I've come to terms with how our lives will be. I'm scared of puberty and most of all DC2 getting physically too big for me to restrain in a meltdown, I already get hurt a lot, but the big fear is me and DH getting old and what will happen. DC1 is incredibly kind, tolerant and loving but I don't want it to affect their adult life.

But to end on a better note. Joy. DC2 has brought us all so much joy in simple wonderment at the stuff we all ignore in the world. Again, like a toddler. They are loving and affectionate and I couldn't imagine them any different. DH and I are a team, we were together a long time before this challenge, and did a lot of the stuff like travel that now isn't feasible, and I realise how incredibly lucky I am that he fully takes his share of the load. We give each other time out regularly. Many of the mums I meet parent an autistic child alone, or with a partner who doesn't pull their weight and that must be relentless.

My eldest ds is nearly six. He's not yet diagnosed but is on the waiting list. He very likely will be diagnosed.

He's violent, volatile and controlling.

We keep weekends and holidays quiet and I often feel we are walking on egg shells. Home is not a harmonious place and I often end up being injured because I'm trying to advocate for my youngest (for example youngest wants a fair share of the telly).

Currently I'm tired and not very full of hope. The violence and aggression is getting far worse as he gets older and he's only getting bigger and stronger.

Apologies for a negative post. Horrible memories of growing up with a sibling who very likely had ASD. It was not diagnosed (professionals realized there was a problem, but parents stuck their heads in the sand). For a long time I thought there was something wrong with me, as it was not possible to build a close relationship and every family activity ended in disaster. I just look back on childhood as a time of fear, stress and sadness. It must have been awful for everyone involved.

This was a long time ago when diagnosis, understanding and support was minimal. Without it there is this layer of confusion and shame.

My sibling‘s children show multiple indicators that an assessment for ASD would be beneficial in order to get support and understand what is happening. Instead the same pattern of denial and moving away from concerned professionals (changing schools, eventually to a public school) is repeating itself. The grandparents are actively and almost aggressively denying the reality. This is horrible to see as there are so many issues, such as anxiety and behavior that appears to others as socially inappropriate (the children have no support and protection).

Ds 16 has autism and a severe learning disability. Our lives and everything we do revolves around him - how the house is set up, where we go (needs 2:1 out of the house) working (I can't, dh has to work around him). We go from one battle to the next regarding provision and services. We have little outside help because he is seen as being too challenging/complex so social care say there is little they can provide - funding for sixth form residential placement has been but placements are saying no because he needs 2:1 and they can't staff it. There will be many families like ours in the same situation.
.

My 10yo dd is on the waiting list for assessment. It only became apparent 2 years ago something was a bit different about her and it's become more Stark all the time, especially as I have 2 other dcs and the three of them are very close in age.

Since she was small she's never been able to take criticism. You have to be very careful about how you word it. In fact you have to be careful how you word anything. Routine change can be an issue but that part comes and goes. Her "moods" which come from nowhere can ruin plans at the drop of a hat. She can be "odd" with friends. She'll have a friend over and half way through lose interest, which has left me in many an awkward situation! Apart from when it's as a result of her being overwhelmed / upset - she doesn't really express emotion. Everything is quite flat. Until she chances upon something she wants to talk about and then it's incessant over excitable chat.

The whole family has been impacted. Particularly over the last couple of years where my own mental health has taken a massive hit from it all. The dcs see how stressed we are from trying to "manage" her, we snap at them if they do something we know will trigger her. They are old enough now to know we treat her differently. I'm currently looking into how I discuss with each of them that she's going to be assessed for ASD. I'm hoping at least that will give the other 2 dcs an explanation as to why she's the way she is and of course I want her to also have this understanding.

So many familiar themes on this thread. My dc2 is 8, diagnosed with asd at 3 and adhd at 5. It's exhausting, I'm so so tired. As pp say it's the constant thinking ahead, setting timers, walking on egg shells doing everything and anything to avoid a screaming meltdown that comes at somepoint anyway. We too have a very limited social life. I go out with my friends, dh goes out with his. We used to get a babysitter in when he was small as the nursery staff could do it and he was in bed earlier, no chance now. I worry he'd hit or bite someone.

School want to exlude him for biting and we're desperately searching for a place at a sen school but waiting lists are years long. So much paperwork and knowing we'll have to go to tribunal.We both work ft and have another older dc who I feel guilty about ALL the time because we can't do fun stuff. This weekend for example , no way are we going to a bonfire and fireworks night.

Some good ideas on this thread though for coping.

That’s frightening. I just assumed my DSS would go to a residential school - didn’t occur to me they might be able to say they can’t meet their needs. What now for your family? Sorry you’re having this uphill struggle.

"That’s frightening. I just assumed my DSS would go to a residential school - didn’t occur to me they might be able to say they can’t meet their needs. What now for your family? Sorry you’re having this uphill struggle."

There are major issues with staffing in residential provision and more young people needing placements than there are placements available. Schools can pick and choose who they take and they are not taking those who are more complex. This includes those who need a section 20 ( social care) placement. Social care have nowhere to place them.
We have to carry on and hope something turns up.

The government could invest in state sector provision for the most complex but it chooses to let it be provided by the private sector and this is the outcome.

Well, 2/3rds of our household is neurodiverse. DS was a late diagnosis (at 13), DH is very much on the spectrum but never sought diagnosis. For me it's normal. I make different meals for preferences, pretty much every day. We don't do typical family stuff of loads of outings, group sporty things or whatever on weekends. Both DS and DH prefer to escape to gaming worlds in their free time, which is fine. I'm here on the sofa with the cats for company. It can be lonely sometimes.

Aw, @MrsMariaReynolds I can relate. I'm lucky that I have a highly social job 3 days a week (reaching teenagers) so I can handle DD endlessly gaming and DH fettling his bikes and his car.

DD(8) was diagnosed with Down’s syndrome at birth, ASD at 2.5 years and ADHD at 7. It’s hard to unpick exactly which bits of her challenges are caused by which condition, but she struggles massively more than her peers with just DS.

She wants to control everything in the house - who does what, who sits where, whether the lights are on or off or the curtains open or shut.

Because of her sensory challenges and anxiety there are very few places we can take her, so we’re mostly stuck at home. DP and I take it in turns to go out and do stuff, though I can’t really handle her on my own.

We’re unable to see my brother and his family with her, because she can’t bear to be around babies and small children.

Similarly, she can’t cope with play dates or parties.

DP and I have both gone part time because she can’t access (and wouldn’t cope with) wrap-around care, so our finances are severely affected.

Our world has become very, very small.

Our house runs on her mood.

She mostly stays in her room. She college refuses most weeks.

She has disordered eating, she will only eat about 3 things.

She hates my husband and most of the time I wonder if it’s worth me just getting a divorce so I can live separately with her but then she will find something else to control about my life. If I do something she doesn’t like she will threaten suicide. I live in constant fear.

By won't do you mean can't?

@Phineyj I have a pretty social job in a primary school. Never a quiet moment to myself until I get home, so I'd be lying if I didn't admit to enjoying the solitude at home... sometimes... 😁

All of us are neurodiverse, but ex Dh also had a dx of covert narcissism so everything centred around him. He’s gone now and we are all happier and extremely good at accommodating one another about 90% of the time.

DS is at the "higher functioning" "Aspergers" end of the spectrum. Mainstream school is the right setting for him and while he masks/ copes and appears to be a model student, I get the burned out husk at the end of the day. He can't cope with childcare so what was intended to be a short break for a couple of years has turned in to considerably longer away from work.

The impact on DS2 is that he compares himself unrealistically off his big brother. DS2 is great, and bright. He doesn't have that autistic in depth knowledge and won't, and he struggles to see his own strengths. They love each other dearly, but the bickering is legendary and DS1 can't let anything go so keeps on stirring, then doesn't cope when DS2 gets the upper hand. I'm glad the neighbours are detached.
Lockdowns did a lot of damage to DS2 which is slow to settle. We're getting there slowly. Much of that was down to being denied the company of NT children for so long.

Family life is slower, more dull and staid than I'd like. DS1 needs to recharge between things and struggles with spontenaity. I need them to feel alive.

I like that my DCs aren't rushing out of childhood and still play. We tiptoe towards growing up gently.

I love DS1. I wouldn't want to fundamentally change him, but if I could dial down the frustration and overwhelm trigger points so he copes better, I would. I think he'd appreciate that too.

It is a lonelier life. He doesn't cope with NT levels of social input, but he doesn't feel "SN enough" either. I've lived with a relative with very high care needs and that's a different world from where we are at.