Family holidays as an autistic adult - argh.

[TheWayTheLightFalls]

I’m mainly writing to get things off my chest, but any advice would be welcome too.

I’m autistic, level 2 so moderate needs. There are many aspects of my life in which I function very well and I expect most people would be surprised at my diagnosis, but I have broadly arranged my life in a way that makes things better for me and minimises stress. I have three children (shouldn’t have, but they are here and the back story is long and irrelevant). On a daily basis I am just holding it together and trying to do my best by them.

DH fancied a holiday this school break. I really didn’t want the kind of holiday he proposed but he whined and beat me down with how lovely it would be and how much he would be doing and how he would plan everything. We are one day in, in Europe. So far:

I don’t cope well with changes in routine, which is basically holidays in a nutshell. I knew this, and here it is happening. It’s a bit better for me in places we have been before, because it’s more familiar, but that didn’t happen this time.

Airports/public transport etc - loud, crowded. Arrived late and needed to sprint through the terminal.

The accommodation is smaller than our home so I’m constantly surrounded by other people’s chewing, tv, chairs scraping etc.

I am uncomfortable in unfamiliar environments, and can’t shake that I am using someone else’s bed / towels / cutlery. Should have brought my own, forgot. I’m like this at home too - I don’t eat in other people’s home etc. “Uncomfortable” sounds mild but in practice it’s closer to disgust, so I am not eating much or able to be comfortable anywhere.

I’m just unsettled and sad, and then beating myself up for not enjoying things.

If we were at home one child would be at a holiday club that she loves, younger two would be in nursery. I’d be in my own home. Then in the afternoon I would pick them up and we’d get an ice cream, maybe go to the park - they’d be equally happy and I wouldn’t be on the edge of a meltdown.

DH is also pushing all the usual domestic crap onto me, which doesn’t help. And in a day or so will get pissy and angry at me because I am spoiling his holiday. And then will get a migraine which will push yet more childcare and domestic crap onto me.

The evening before flying I ended up taking visiting family to a West End show, ie staying up late and being tired, spending 2+ hours in a loud and crowded theatre, and coming home with a cracking headache. So that didn’t help. Again, very much “everyone else seems to enjoy this so why can’t I?”

Then we will come home and everyone will assume that I am rested and refreshed after my lovely holiday. I feel like DH knows that I am autistic, except when he fancies a picture perfect holiday and then I need to magically just snap out of it and facilitate things.

Could you boil wash/dishwash the cutlery, to make you feel better while you're there, and rewash bedding? Is there a comorbid condition such as ocd/gad along with your autism? I don't have autism, but I have a different neurological chronic condition, and possible undiagnosed adhd. I find crowds and noise drive me crazy too, no anxiety, but more the noise I find draining. I find the end result of the holiday worth it though, and so does my ND child. We are able to relax on holiday, and it does us good, so we love that part. I'm also lucky that my dcs love flying too.

You have my compassion, it isn't easy. I think you need to do whatever you can to make things a little easier; could dh could pop out for lunch with the kids while you recharge your batteries?

Parent to an autistic child here and ex-wife to an autistic ex-husband. One of many reasons we split was his inability to travel/go on holiday. But I was very clear from the start that I loved it, had already travelled. He pretended he wanted to too. Until we were married and then he would say he did but his anxiety was too much and it ruined every trip. Not his fault, I get that. But I couldn’t stay in that situation.

My dd also finds holidays hard, but we build in accommodations. I’m also teaching her that it’s ok to not like them, and that means sometimes I will take her brother somewhere without her. Because he shouldn’t miss out because she can’t manage.

Can your DH take them away without you? Can you make sure that any future holidays take account of your accommodations (your own sheets, cutlery etc). Could there be somewhere you always go back to that is familiar for whole family holidays and new places are done just by your DH?

Op, sorry no useful advice for current holiday but for future holidays I don't think it needs to be all or nothing situation. There is a middle ground between not going and going somewhere too full on. I think you and your DH both need to compromise on finding a holiday that meets everyone's needs. Really I think the autism is a red herring here in the way some people have responded as most people would not be happy if their partner booked a holiday where their feelings and preferences had been completely overlooked. I couldn't imagine booking a holiday that I know would cause my partner distress. There are a lot of holiday options available and I'm sure somewhere that had a better chance of suiting everyone could have been found

Hear hear

Sorry but your family wants and deserves a holiday. Not farmed off at holiday clubs and nursery. You either suck it up or say you don’t want to go and your husband can take the children on holiday alone.
Your family should not have to accommodate your needs all the time when you are not willing to accommodate theirs

I have a good filter for autism bashing, whoever mentioned it. That’s ok.

Having children/being married - knowing what I know now I wouldn’t. Eldest is a doddle (likely also ND), then twins. I wasn’t- and this is common for women - diagnosed until they were very much here. Because I was coping, because life was simpler and quieter and more within my control.

To all the “world can’t revolve around you” posters - yes I know. It doesn’t. I push myself as hard as I can daily and am as creative as possible with my time and resources so that my family isn’t experiencing any sort of a detriment on my account. As I said, people who know me irl would laugh if I told them I was autistic, because I mask to the limit, daily. Kids get everything they need or want, and when I am with them it is all about them. I’d love more childcare but their nursery shut and instead they have a bit of nursery and a nanny one day a week (= in my own home, which is shit for me). Things may improve in a few months but for now I just suck it up because there is no other choice. I suspect as a socialised and late diagnosed female comparing me to your husbands isn’t hugely relevant but what do I know.

Yes I work , whoever asked. I’m self employed, and part time.

I should have booked things myself. Dh made all the right noises and said he’d handle it (because I am well and truly at my limit daily - I collapse into bed stupidly early every night because I’m at 1% battery by the evening, so finding two-three hours to research and book a holiday that would suit us is difficult to the point of impossible).

I have airpods. Which are noise cancelling. Which I need to remove at one minute intervals because someone wants my attention.

Don’t let your first experience of a holiday put you off. Perhaps next time you need to research and find the holiday, one that meets your needs.

Next time, get to the airport much earlier. Allow plenty of time to get there. There’s nothing wrong with arriving early, there are plenty of places to eat or just to sit. At the airport, I find the furthest away gates are usually very quiet as nobody goes that far away from the main facilities unless they have to.

It sounds like you are staying in a villa/Airbnb? Would a hotel be better? Hotels usually have Kids Clubs and there are usually two sessions per day, one in the morning and one in the afternoon so you can get a break. There is usually entertainment for the kids in the evenings and they usually spend all evening playing with the kids they met at kids club in the day so again you get peace. Or forget the evening entertainment and go a nice walk after dinner. Sit out on your balcony with a drink and play cards. There is no requirement for you to do domestic things in a hotel.

As for the present, send your DH out for day with the kids if you need a break. It’s good for kids to have some time with just Dad. Go and do something you would enjoy. It’s your holiday too, you don’t have to be all together all the time.

You’re there now so make the best of it. Buy yourself some cutlery for a start and use paper plates if needed. I get it x

Did you request special assistance at the airport? They can take you through security without queues and crowds. Some airports have quiet spaces- Manchester has a sunflower room. They can also get you in the aeroplane first or last and off first or last again to help with feeling of control.

We use it for my dd and it has helped loads.

I've just seen your update that you've got nursery aged twins. You're a fucking superhero for even considering a holiday!

To anyone saying "you have to put up with a bit of discomfort":

a) autism isn't discomfort. Discomfort is the word used to describe a neurotypical response to an unfamiliar environment.

And b) she is putting up with the "discomfort"!! She's taken three young children (including preschool twins!) away on holiday. She's literally putting up with it right at this very moment.

OP you need your husband to take all the kids out somewhere for a morning/afternoon so you can have some time to decompress. This isn't an excessive request for any parent on any holiday.

Give yourself time to adjust. Make a plan for things that might help you eg buy a towel, set of cutlery, plate. Go out on a long walk on your own with EarPods in. Buy some snack foods that you can enjoy from the packet. It won’t be easy but small changes may help.

At the risk of derailing OP's thread, it's not as clear cut as that. Autistic people don't go through life scheming and plotting, knowing that they need certain things but doing other things. You grow up feeling weird and wrong, so you try your best (by doing things like repeatedly pushing yourself out of your comfort zone, like another poster suggested OP does, and then feel even worse about yourself when it doesn't help, like there must be something wrong with you because it seems to help everyone else), and you end up masking (you probably don't consciously even view it as a process, it's just something you learn to do from a young age) to avoid being bullied, to get through school, to get and keep a job, just to try to seem normal and not be treated like a total weirdo (although you often still are).

It's not a masterplan. You end up in situations you're not happy in, you don't really understand WHY because these things seem to make other people happy (like holidays), and often, you hate yourself for being different. I have no doubt that neurotypical people in relationships with autistic people have it hard - autism is literally a communication disorder, and the nuances of relationship communication are so important but also so hard for us to grasp, and our rigidity can make us controlling and seem like our priorities are messed up. I'm not denying any of that. But I just really wanted to make the point that ending up in unsuitable situations is not deliberate - we're just trying to live life.

Enable everything for them and live a half life? OP has enabled this whole holiday purely for her NT partner- they're literally there right now! And a life having to organise your own foreign holidays (or even never travelling abroad <gasp>) isn't a half life. Obviously.

Some things that have helped us… destinations that are not too urban / packed with people, so staying somewhere self-contained (not a hotel) that has a lot of greenery around, but is a short drive away from busier places to visit works well. When you find somewhere good, go back there - so you have familiarity on future holidays. Accept that people want different things; my dh loves to travel to new places, me not so much… so he goes away with friends every year, and also does some travel for work. If you can take more than one holiday a year, perhaps one is more relaxed, and perhaps one is a bit different. Definitely time to decompress helps. Also, re: airports, some smaller airports can be a bit more relaxed… we flew from Southend airport (maybe 5 years ago), it was quite relaxed, quite small and didn’t feel like there were masses of people there (which was lovely)..

I’m autistic too so i know your struggles but we just have to do it don’t we. The kids come first !

I’m pretty sure that’s what the poster was implying too but as I said, asking someone for their diagnosis is rude and not all autistic people DO experience their autism as described. It’s a good idea to hear a range of experiences.

Autism is a disability but it is not a reason to make other people miserable by choosing to marry and have children knowing you cannot cope with the realities of that. Children of autistic parents often report miserable childhoods stifled by constant restraints and routines that go beyond standard family timelines. Spouses of autistic people often report feeling genuinely abused by their partner in ways that aren’t acceptable in NT families but feel forced to accept it due to their partner’s diagnosis.

I’m sure some families and marriages are happy but you only have to look on mumsnet to see it’s few and far between. Feeling sad that you struggle and needing to rely on your husband doesn’t negate other peoples experiences. If you know you cannot cope with marriage and/or children and your diagnosis will significantly negatively affect your family- do not put them through it.

I have a lot of empathy for this. After having three children and raising them to the best of my ability, pushing through all the uncomfortableness that this entails, I realised after watching something about female autism on television and then a lot of reading up on the subject, that I definitely have a lot of autistic traits. So it’s not always possible to make decisions about having children with a clear head, so to speak. Knowing what I know now, I probably would have made different decisions😊

It is a half life for the spouses and children who have to endure a life of restraints because one adult cannot do every day normal things.

I always struggled with holidays and then found out most of our household is ND. Planning is key I think. The last couple we've done I've done social stories for the kids covering the journeys, where we're staying, activities we're doing. During Covid everything had to be prebooked which actually worked really well for us. I do a day by day itinerary, plan in down time for us all. We often self cater but eat out or get takeaway every day (and include the list of places we can eat from in the social stories). When the kids were younger we often had to divide and conquer due to opposing needs. One would take the higher needs child for a bit and the other would have a break from them. The other kids would choose who to go with but weren't as high needs so we still got a bit of a break. The thought of feeling refreshed after a holiday is lol! Also make sure you have down time planned in before and just after the holiday. I think doing the social stories actually really helps DH and I too.

Going on a foreign holiday with preschool twins isn't an everyday normal thing.

And everyone lives a life of restraints for all sorts of reasons, usually financial. There's loads of stuff my kids very rarely do (go out to eat/get takeaway, go to theme parks, cinema, bowling etc) that some of their friends do often. My kids have never been abroad. But all these things are a very modern expectation. We live a perfectly calm, happy life.