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MumsnetGuestPosts (MNHQ) Mon 19-Dec-16 11:34:45

Guest post: "Christmas is overwhelming when you have autism"

Tiny Tyger, Baby Bear and Me says sensory overload, disruption to routine and anticipation make the festive period stressful for adults and children with ASD

Tiny Tyger, Baby Bear and Me

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Posted on: Mon 19-Dec-16 11:34:45

(36 comments )

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"Autism makes the waiting – which is tough for kids at the best of times – not much short of torture."

Christmas is stressful.

I'm no Scrooge - I love Christmas. I love Christmas films and songs, tacky decorations, mince pies, mulled wine, Santa hats, all of it. It's stressful, though, and if it's stressful for neurotypical people it's positively overwhelming for autistic people.

In our house, my son Tyger is the only one of us with an official autism diagnosis, but his younger brother, Bear, is being assessed, I'm planning on pursuing an assessment in the New Year, and even my husband is almost certainly autistic.

Those of us on the autistic spectrum already struggle with processing sensory information, so you can imagine how tough the onslaught of Christmas can be: lights, sparkly decorations, tinsel, Christmas music, crowds, parties, winter spices, itchy hats and gloves, the list goes on and on.

It's no big surprise that sensory overload is a problem for autistic people in December, but it isn't the only problem.

Everyone complains about how early Christmas starts. From the second the last straggling trick or treaters make it back home, it's everywhere. Unfortunately, waiting and patience are problematic when autism is involved.

For one thing, autistic people can become somewhat obsessive. It's also quite common for people with autism to struggle to fill their time. Combine the two and you end up with children obsessing over the idea of Christmas and unable to do anything else. It makes the waiting – which is tough for kids at the best of times – not much short of torture.

Those of us on the autistic spectrum already struggle with processing sensory information, so you can imagine how tough the onslaught of Christmas can be: lights, sparkly decorations, tinsel, Christmas music, crowds, parties, winter spices, itchy hats and gloves, the list goes on and on.


Tyger, who's four, finds it especially difficult to occupy himself; waiting for Christmas is excruciating for him. We do our best to help. The boys have several different count-down devices. We have the usual chocolate advent calendars, plus we make paper chains on 1 December with 24 links and the boys take one off every night before bed. Then there's the elf to find every morning and this year they also each have a string of 24 tiny presents and cut the bottom one off each day.

The gifts (we're talking a couple of chocolate coins wrapped up, a troll pencil topper or a tiny 10p car from a charity shop, not an iPad!) help give them short-term treats to look forward to so they only need to wait a day rather than a month.

As well as helping with the wait, these tools set up a clear routine for the boys during the Christmas period. If someone knows just one thing about autism, it's that autistic people like routines - and Christmas disrupts routines.

For school-aged children, the Christmas nativity is a big disruption, as is the high rate of illness through winter. Tyger suffered both successively when he was off school due to illness for a fortnight and returned to find they'd started rehearsals every day.

Tyger used to really like school but even the most school-loving autistic child will probably be anxious about going back after an absence. Often, if they enjoy school, they're fine once they settle back into the routine - but that becomes tricky when the usual routine has been turned on its head.

We had delaying tactics, shouting, tears, fake injuries, you name it. Tyger was late for school more than once and he's still not as keen as he was. I could have done without all the school drama. Us adult Aspies have an extra reason for finding the Christmas period hard.

We often have difficulties with executive function - planning, attention, working memory etc. Buying presents, writing and sending cards, sorting a tree, putting up decorations, buying in all the booze food, remembering dates of parties and nativity plays and Christmas jumper days and fetes and market - all of these involve executive function. All take up a lot of energy for autistic people (and that's not even considering the social aspect of many of them, which is exhausting).

Of course, that doesn't stop me piling the pressure onto myself with lots of traditions I couldn't possibly not undertake. The boys must be taken to a garden centre so they can each choose a decoration for the tree. The fudge must be made. We must get up early and start with stockings before moving on to presents. We must have croissants for breakfast. We must toast to 'absent friends' at 11am…

More routine. I thought I enjoyed the magical customs of my childhood but have come to realise I need that familiar routine to enjoy a day full of chaos, noise, mess, expectations and demands, to get through the onslaught.

Christmas is still awesome, though.

By Tiny Tyger, Baby Bear and Me

Twitter: @TygerBearandMe

quirkychick Mon 19-Dec-16 14:47:10

Oh this really resonates with me. My youngest has Down's Syndrome, no official ASD dx but she certainly has some traits. She was also off school and came back to a Christmas party at school, it was all a bit much tbh, as was her nativity. We're not good at change, and she was also find it hard when all the Christmas stuff stops as she loves all the songs.

Sloper Mon 19-Dec-16 15:59:12

Thanks for the guest post!

Yy to all of this - and don't even mention the nightmare that is trying to go to insanely busy, bright, loud shops for those last minute gifts. Or the office Christmas dinner, which is an onslaught of trying to socialise while balancing work rules and all the noise and eating.

I've only recently worked out that I'm (probably) on the spectrum, and realise that over the years I've only coped with Christmas by gradually checking out - buying simple gifts from wishlists, no Christmas cards at all, as little socialising as possible.

But still it's a beautiful time of year and I like it in itself as an adult for a part of a long-term routine with regular rules and traditions.

Wishing all a merry and orderly Christmas fsmile

PolterGoose Mon 19-Dec-16 17:29:39

Message withdrawn at poster's request.

Flisspaps Mon 19-Dec-16 18:15:29

This is interesting, as I have an ASD diagnosis but dealing with Christmas isn't a particular issue for me as I have my Christmas routines in place.

I strongly suspect DD has ASD however she is also largely unbothered by Christmas.

I think because I can plan the hell out of it (and I am strict about planning because of executive function issues) and prepare DD, we find it far easier to deal with than more minor but unexpected changes.

I think it's important to remember that one person's ASD experience doesn't necessarily translate to another person's ASD experience.
K

Ekorre Mon 19-Dec-16 18:27:19

DS and I both love Christmas. But we have it very chilled, just us in pjs playing, reading and watching films. We do have a lot of re-useable advent calendars though! Always use the same decorations. He is a sensory seeker so loves tinsel, lights and that side of it. Agree about the traditions. Nativity is hard but that is the same if it was a summer concert, its the social aspect rather than Christmas specifically.

zzzzz Mon 19-Dec-16 18:51:50

Christmas plays and endless dress up days are a pain but otherwise we too enjoy Christmas and it really isn't a problem. DS ISN'T particularly routine bound though, so perhaps that's the difference.

Allofaflumble Mon 19-Dec-16 19:16:25

I used to drive my sister crazy with "Let's talk about Christmas" and now it makes sense how my son nearly sent me to an early grave repeatedly asking why he couldn't have his present and I mean repeatedly!!

Thanks for a great post and helping me make sense of some long ago buried memories. smile

CloudPerson Mon 19-Dec-16 19:47:01

Lovely post fsmile

We're another autistic family, the difficult thing for us is us all wanting/needing to be in control at the same time. Which is fun 😬

Mogtheanxiouscat Mon 19-Dec-16 21:06:54

Very interesting post. Some parts really resonated with me. The patience aspect and disruption at school in particular.

consciencemakescowards Mon 19-Dec-16 21:42:37

Very interesting! Agree that less formal structure at school at the minute is difficult, as is dealing with the exuberance (and possibly disruptive behaviour) of other children when the routine slackens a bit.

Just chatting instead of working, pairing up for party games etc seems stressful.

Hadn't really though about the excruciating wait for the big day being an asd thing, but appreciate now how hard that must be!

Thank you!

nickelbabeinamanger Mon 19-Dec-16 22:37:48

Since I worked out I was autistic, and got obsessed with the subject, I have also "diagnosed" both parents - dad more than mum. I do have an official diagnosis.

I know christmas was really stressful for all of us when I was a child (even now it is! My dad gets really hung up with detail), but wgat I remember is that it was always done in exactly the same way, and we never had any family around until teatime on boxing day, and that was a buffet type salad tea.
Yes, totally agree the disruption and having to wait thing being really stressful, but I'm absolutely convinced that having autistic parents made it less horrible than it could have been - none of this too many people round and having a proper timetable when you knew that everything would happen at the time it should. (Scary for me as an autistic parent knowing it's now my turn to do that, mainly because I can't get stuff done and organized)

EllenJanethickerknickers Mon 19-Dec-16 23:20:58

Interestingly, my DS2, who has had a dx since he was 3 and is now 17, is completely unfazed by Christmas these days. He used to find the last week before Christmas at primary school difficult, with its carol rehearsals and party days which were a bit trying, but his secondary school was a bit 'bah humbug' about Christmas and had normal lessons until the last day, so he coped very well. He's always been fine with changes to routine that involve doing stuff he enjoys, so holidays etc have never been an issue.

DS3, who is undxed but very quirky, finds it all a bit tricky, though. He very much depends on routine and things have become traditions quite randomly. We had spag bol for tea 2 Christmas Eves in a row. This is now a 'tradition' cast in stone. DS1 and DS2 happily dispensed with their fabric advent calendars with pockets for treats each day in favour of Cadbury's cardboard calendars, but DS3 insists on me still hanging all 3 old ones up and filling his with treats.

DS2 constantly surprises me with his adaptability. Even if we do have to watch Pointless every day! grin And despite having no need for friends.

DS3 constantly surprises me with his inflexibility even though he is 14, with a nice group of geeky friends and no chance of a dx.

But there you go, if you've met one person with autism, you've met one person with autism... fsmile

headinhands Tue 20-Dec-16 06:19:00

I work in a school and work hard to keep as much of the existing routine as I can while still having the usual fun.

As a note not all aspies are into routine.

BiddyPop Tue 20-Dec-16 10:01:29

We have a 10 year old ASD/ADHDer. December has always been tricky, more so because the birthday is 26th December.

Keeping to regular routines as much as possible is important. And so it keeping to annual traditions that have built up (so she comes to my office on Christmas Eve/last working day, and goes to see the "live crib" that day too - no WAY would she go to DH's office that day although happily on other occasions, for example).

The advent calendar is very helpful to mark off the days. We got the Lego one last year for the first time, as well as the one Nanna made years ago - and having something to make every morning helps to get over the early morning grumps and into a more focused mindset.

I have learned the hard way not to push things like meals too hard. One year, with unavoidable delays to Christmas dinner, she got so frustrated and tired that she had a tin of beans and went to bed about 8.30 in Nanna's house while the rest of us then had dinner - just pure meltdown. We are getting much better at spotting things getting to overload before they burst over the dam, but still, she was very happy to pick up a tshirt in Primark this week that said "I am in Christmas meltdown" or very similar.

We are also happy to let her stay by us when going new places (even if they are very familiar normally) - various older folks want her to "go off and play while we chat" but we now know that if we let her sit on our knee (to accusations of "you are mollycoddling her!"), she will slowly start to join in the chatter but also get comfortable in her surroundings and head off herself in due course to get stuck in to the toys or with other children and be totally happy, just coming back on occasion to "sense check" herself with us - but if you push her away before she has got comfortable, then the meltdowns may come. And not to force her to talk to Santa - back in the days of going to Grottos, we had some bad experiences and learned to find Santa in places other than dark sheds (so a train where you can see him coming and stopping to chat with everyone, or a well-lit big space where he helped you to plant a tree and see his hedgehog worked great - but sitting on his knee and solely focused on you was soooooooo not a good idea!).

We are also aware of needing our own space - so we stay at home many years rather than travelling to wider family. And when we do travel, we normally stay in a rented cottage rather than with either Granny - we stay with family the rest of the year but there is just too much to overwhelm at Christmas and some quiet space to be able to retreat to is vital (we've now come to realise, for DH and I as much as DD).

And I also know to keep things adaptable now. We don't tell DD our plans too much in advance, we do plan some things together, but some things, especially things that can just happen and don't need pre-booking, we tend to have planned in our heads but on a "wait and see" basis as to how she will cope.

I know everyone with an autism/ASD DX is different. But we have seen huge improvements in our DD as she has grown, (a social skills and communications course last year was invaluable) and in our own awareness of what to do/not do/watch out for. So while not everything is the way we might want it as adults, there is a lot that is enjoyable about it again.

And I could recite the words of "Home Alone" by heart I reckon as well!!

Emochild Tue 20-Dec-16 17:24:34

Dd really struggles with Christmas for one reason

Presents!

She was fine when the man in the big red suit bought them but now she knows they come from actual people the expectation to perform Is just too much
Having to look pleased and say thank you for a present she doesn't like is just too much -even when people say they don't have this as an expectation of her she doesn't believe them as she understands the social norms

Presents can make or break the day

The other year she was so overwhelmed by the whole thing she snuck downstairs at midnight, collected up her presents and hid them under her bed to deal with them later

nickelbabeinamanger Tue 20-Dec-16 22:05:42

That sounds like a great way to deal with presents. Sensible!

SortAllTheThings Tue 20-Dec-16 23:01:12

Woah.

Yes, could have written this.

DrCoconut Wed 21-Dec-16 00:37:24

My son is 5. We start the long journey to diagnosis in January. It's the second time round for me as I have an older child with a diagnosis too. His nativity was a horrible moment of clarity this year. The other children were smiling and singing in their cute outfits. He refused to wear his, would not go on stage and just sat and stimmed for the duration. He'd done rehearsals and I think having the stage out and everyone watching spooked him. I felt really low that day because it was so painfully obvious that he has problems. Autism sucks.

headinhands Wed 21-Dec-16 14:14:21

Drcoco I reckon all of us ASD parents can empathise with those moments. I find them easier now that we have the definite dx. I think the route cause is worrying about others. But now I think 'fuck it, she's what matters'. Luckily children are much better at accepting children's differing needs than some adults who should know better. This is why we need inclusion.

AcademicOwl Wed 21-Dec-16 18:44:16

Drcoco, completely empathise! My DS didn't manage to make it to his bit of the nativity, despite weeks of practising. He had to 'escape' very discretely, halfway through. That was a bit upsetting, but another parent decided to help me out by "sympathising" loudly about how awful it must be that he went out and missed his song. And how wonderful her son had been. 2 years ago & I still find that a moment of revelation: how other people react.
Christmas is rubbish for lots of reasons. But autism just adds to the stress significantly. 😰

headinhands Wed 21-Dec-16 19:19:43

loudly about how awful it must be that he went out and missed his song. And how wonderful her son had been.

As I said this is why we need inclusion. Some adults who have never come across SEN/ASD tend to put their foot in their mouth. But kids are much quicker at understanding that individuals have different needs.

Ashvis Wed 21-Dec-16 19:48:09

My ds is 5, also has autism, and his nativity was very similar to ones described above, but I was completely delighted. Yes, ds is clearly very different from the other kids in his class, but I don't judge him against other children. They can do things he just can't, but he can do things they can't too. Before the performance (or lack of!) we thought about what would make it a success for him, in what ways ds might be making progress, and when he sang on my knee rather than up on stage I was thrilled. Last year he couldn't even manage that. He might be very different, but he's making progress, he's working hard and I am damn proud of my ds. Let others judge, couldn't give a toss, he is happy, he is brave and he's bloody marvellous. Yes, autism can make things harder sometimes. But sometimes it's easier too. And given how much of a grafter my ds is, he deserves praise for doing his best, even if it's a different outcome from his classmates.

MrsNutella Wed 21-Dec-16 21:23:53

Thank you for this post. It makes so much sense and helps with the little things that I hadn't figured out yet. fsmile

sashadasher Thu 22-Dec-16 08:33:39

Our household has 3 out of 5 with confirmed ASD so christmas can be a stressful time as everyone has different triggers.We have found the thing that has made life the easiest is stopping family visiting, know it sounds harsh but in our case the pil didn't understand added to the stress levels and we all ended up acting like performing monkeys.They had an unrelated fall out with us and stopped visiting & it's been best thing ever, can't believe difference it's made.our ds eats but not xmas dinner but so what we cook him his fave pasta, he eats what he likes but isn't frowned at so no meltdowns.Nobody watching expressions as they open gifts, they may love something but face doesnt convey this to guests& they often dont understand this (may say understand autism but don't live it)& amount of internal pressure on a child is very hard to conform to the standard'norms' expected by others...Maybe cut down on decorations say just have a tree, think about crackers as very noisy....talk about these things smell of tree, candles etc

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