Christmas for Autistic Adults: What is it really like?

Three weeks ago my husband received a detailed written report which stated clearly that he was indeed autistic. Of course he always has been autistic but as this is his first ‘official’ Christmas as an autistic adult I thought I would dedicate this special blog to the millions of autistic adults who inspire me, encourage me and motivate me to do the best and believe for the best for my two autistic children always.

I have to be honest and say both my children struggle with Christmas and I wondered if that got easier as a adult.

I asked Lisa how she manages Christmas both as an autistic adult and a parent of two children with autism.

I love Christmas and spending precious time with family. Family that I’m comfortable with. I love the events we have over Christmas but at the same time seeing people I have not seen in a while can fill me with anxiety.

It’s like I try so hard, too hard for it to be perfect. And that’s when my obsessive behaviour kicks in. I have to have everything looking just right. I want to attend so many sensory related events with my close family, the ones I’m comfortable with. When they don’t share my enthusiasm it brings me down.

I like to have set people around me and if they aren’t, it makes me anxious.

So as much as I love Christmas and everything that goes with it, i am often accused of trying ‘too hard’. Trying too hard to organise everyone, and pleasing everyone. I build myself up and sometimes I get overloaded with it all.

Social expectations and anxiety was something Chris from (http://autisticnotweird.com) also touched on too:

As much as I love Christmas Day (and speaking as a practising Christian too), it’s surprising how little I love Christmastime. The day itself is usually wonderful, but it’s preceded by a boatload of expectations- some of which you can’t match, some of which are unclear.

Worst of all is the expectation that everyone MUST be happy in the run-up to Christmas – including those with mental health issues. And not only that, but you must express that happiness in very specific ways. (Even on the day itself, it’s a time when getting drunk at midday is seen as acceptable but if you check Facebook to see your friends enjoying themselves, you’re being “antisocial”.) And having to do a hundred things “because it’s Christmas” has never struck me as a good reason to make yourself stressed- honestly, I’d rather celebrate Christmas in a way that helps me to access the beauty of the season rather than the social expectations. I’m pretty sure that’s what Jesus wants too.

Social events can be a struggle for many with autism at any time of year but the extra pressure of so many events can be overwhelming even as an adult. I love how Nikki from http://www.spectrumgirls2.com describes the after effect of so much socialisation as a ‘social hangover’ as this is something I see in my own kids regularly.

I do love Christmas, I think it’s magical and it reminds me of fond memories when family all got together when I was a child. I must admit I do get very overwhelmed with it all as there’s a lot of preparation required on top of being a very busy parent carer.

I find the shops so busy this time of year, music, crowds, lights and I try and avoid taking my girls into crowded shops as many people don’t realise I’m having my own sensory overload as well as trying to cope with both my girls getting overloaded. I do a lot of online shopping. With events like Christmas fairs, nativities, meals, I will cope during the event but will feel emotionally drained afterwards, I often need to go and lie in a dark room and find it difficult to talk after busy events. I’ve heard this being described as almost like a ‘social hangover’ amongst adults on the autistic spectrum. I do a lot of avoiding if I find something quite heavy going, I’m not keen on the wrapping of presents so I do put it off a lot! One of the more unusual feelings I get every Christmas time is a slight depressed feeling of ‘fear of missing out’ which is something that I’ve only just recently found out about. It’s a feeling that my children are missing out on experiences such as visiting Santa, etc but then I have to take a step back and think that experiences like this are not always positive due to my youngest having a fear of Santa, we have to do what is in their best interest.

Helen from http://www.lifeandasc.com echoed some of those same thoughts:

I love Christmas but in small measured social doses (I prefer to limit social events to 1 or 2 over Christmas). I have a set routine for Christmas . In fact the way we decorate the tree and the meal I cook is the same since I was about 10. The hardest thing for me is present giving – I am bad at keep a surprise or waiting till Christmas to open things. For me the greatest thing about Christmas is the ability to stay at home without having to do much – as I tend to use it as complete downtime.

Surprise presents was something Nigel struggles with too:

I’m not a big fan of Christmas. I find it stressful, it’s hard to do the weekly grocery shop when everything has moved around. The whole pressure to socialise, shops being busy, roads full of traffic and the same old songs every year! I’m glad when it’s all over. I much prefer people to give me vouchers or money so I can buy what Iwant when Iwant it and not have to pretend what they have chosen is anything I even like!

I went on to ask Lee if he had any coping strategies that worked well for him:

Ear plugs/defenders, regular breaks to a quite area that others know are out of bounds (safe area/place) try and know structure of the day in advance like a timetable and also knowing who’s coming.

Which leads me nicely to the hope that Matt had for me:

As an adult I find christmas not to much of a problem to be honest, it makes a good excuse to drink and throw money up the wall lol. When I was younger it was a totally different storey though…

I hated the change of routine, things happening on different days, people turning up, tv programmes being cancelled,being so excited about the presents I was getting and staying up all night being sick and then being sick again when I didn’t get what I wanted and working out there was no such thing as Father Christmas and then feeling compelled to tell every other child I saw!

As I expected some autistic adults actually look forward to Christmas and I really hope that one day what Riko from http://www.dragonriko.wordpress.com thinks will be true for my children too.

I love Christmas and having loads of decorations, loads of presents, going shopping, going to parties and having people around.

As I debate whether to put a Christmas tree up or whether this change will once again be too much for my children I am filled with hope that while they will always have autism they may actually one day love putting their own tree up for themselves.

Thank you to all the autistic adults who not only helped me write this but give me hope daily. I hope by sharing your personal perspectives it helps more people understand and accept you all and makes the world a little more tolerant both for you all and for my children too.

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Why I told my Autistic Daughter There is no Santa

I love the magic of Christmas. I love the way it changes people and they think about others much more. Charities often make more money in December than the rest of the year and children sing carols and cheerful songs at school. Although it is very commercial it can be a real time for families to come together and children can have an excitement and anticipation as they look forward to a special day.

So why would I ruin all that by telling my sweet blue eyed daughter that there really is no such person as Santa?

Firstly I am not advocating this is right for every child. My daughter has autism so I chose to explain there is no such person as Santa for the following reasons:

1. Her literal thinking was causing her so much distress about Santa.

Books, TV programmes and all her friends at school talked about Santa coming down the chimney. We don’t have a chimney and no made up story of magic keys or flying through windows could change the fact that even the song talks about Santa being stuck up the chimney! She took Santa’s grotto as literal too so became very distressed and confused that Santa could be in the middle of the shopping mall, at her school party AND in the North Pole making presents all at the same time? Why did some Santa’s wear glasses and others didn’t? Why would some be tall and thin while others were short and tubby?

There is no enjoyment in the make believe of a story when your child sees everything in black and white and will not ‘play along’ just for the sake of it.

2. Her anxiety over all things Santa was stopping her sleeping.

The very thought that a stranger would enter her house while she was asleep utterly horrified her. Even though the whole story of him leaving gifts for her should have eased that anxiety she was worrying over how Santa would carry everything, wether his reindeer would get too tired or even if she would be forgotten (cheers for that one Peppa Pig!) The very mention of Santa was not exciting my child or making her suddenly want to be on the ‘nice list’, it was in fact causing her to stay awake at night worrying and making her jump every time the door bell rung.

I could not continue to see her so nervous and anxious over something that was meant to be a joyous and wonderful occasion.

3. The social expectations around Santa were all too much for her.

Ok so I know she never had to go and see Santa in his grotto anywhere but when he arrived at her school fair or party she found the whole social aspect very upsetting. Having spent years trying to get her to understand basic social rules such as we don’t talk to strangers and we certainly never sit on other people’s knees all of a sudden she watched in horror as every other child she knew broke all of these social rules just because the ‘stranger’ was dressed in a red suit. Her autism makes breaking any sort of rule horrifying and very distressing so Santa became linked with people doing very strange and confusing things indeed.

4. Her defensiveness and love for her brother was more important that any belief in Santa.

This was the crux for me and the reason I found myself sitting with my daughter on her bed while she cried begging me to tell her Santa was not real. You see my daughter has a brother who has complex needs. He can not speak and has a long list of diagnosis. Part of that means he often has very challenging behaviour for medical and developmental reasons. Her brother had just had a very difficult weekend where he had caused hundreds of pounds of damage to things in the house. He had killed her full tank of tropical fish by pouring bubble bath into the water, yet she still loved him fiercely. So when someone heard about her brother’s behaviour and happened to tell her he would be on Santa’s naughty list and would not get anything for Christmas she hated Santa more than she has ever hated anyone ever before.

So I had to tell her.

Telling my young daughter there is no such person as Santa has been the most magical thing I could have done for her. All of a sudden everything now makes sense to her. She can now reason in her mind how ‘santa’ can be in the shopping centre, the local school and somehow in the North Pole at the same time. She realised that the chimney stuff is all a story and there is no need to fear a stranger coming in her house while she is asleep. She understands why children suddenly want to sit on someone’s knee and tell them what they want for Christmas because the man in red is actually not a stranger to them at all. But most importantly of all she knows without a doubt that her brother will have gifts this year regardless of how challenging and difficult his behaviour can be.

I actually wish I had told her there is no such person as Santa earlier. Now she knows Santa is all made up she is happier and more excited about Christmas than she has ever been before.

She knows she is getting presents, she knows who buys them and she knows how we get them.

For some children with autism the magic of Christmas is actually in finally finding out Santa is not real at all.

Could you Spare a Few Minutes to Make Christmas Special for one Autistic Boy?

Hundreds and hundreds of people all around the world have already joined in. It is a simple ask but something that will be life changing for young Isaac.

Here is why:

Isaac is 9 years old and lives in South Lanarkshire. He is the oldest of twins and he has complex needs. He has a diagnosis of severe autism, significant learning difficulties, he is unable to speak and has neurofibromatosis type 1 which has caused a tumour on his optic nerve and on his brain. He does not play with toys but he absolutely loves lifts (elevators to those in the States).

Isaac does not cope with change. He finds Christmas a huge challenge especially when he can not get the sensory enjoyment of watching and going in lifts. Although he watches lifts on YouTube as his parent I am very aware of the language used in many of these videos and would rather he was not hearing such vocabulary. Every time Isaac is distressed (which is daily) or frustrated or bored he only wants to see or be in lifts.

He loves any sort of lifts. He is a regular at the lifts in the supermarket car park, fascinated by the numbers, the voice saying what level you are at and the excitement of the words ‘door opening’. He loves to press the buttons, watch the doors and watch others getting in and out. This is not a recent thing either as his love of lifts has been ongoing now for over six years and shows no sign of abating.

The problem is on Christmas Day and New Year’s Day it is very hard to find a lift that Isaac can watch or go in as everywhere is closed. Isaac does not understand the concept of closed or have any idea about Christmas. There is no toy he longs for and he has no idea who Santa even is. All he wants is to be in a lift or to watch them. When he can’t he self harms and screams for hours.

Can you help Isaac?

Gemma Bryan, a friend of mine who I have yet to meet, decided to make this Facebook page up in the hope a few people would take some pictures and videos for Isaac that he could watch during the Christmas holidays. Please check her blog out here

The lovely Marc Carter at Little Blue Cup then shared Isaac’s story on his website and Facebook page. His site helps find things for children with autism and other disabilities that they are attached to and need replaced for any reason.

Marc happened to appear on ITV This Morning with Philip Scofield and Holly Willoughby on Wednesday 22nd of November where Isaac’s appeal was aired live. I broke down in tears when Philip and Holly surprised everyone by making their very own lift video for Isaac too.

So what can you do?

Well if you would like to join Philip, Holly, transport for London, charities, cruise companies, housing associations, lift manufacturers and hundreds and hundreds of everyday people around the world it is very simple.

The next time you are in a lift please take a photograph or a short video clip and load to this page. All the clips and photographs will be made into a dvd for Isaac and also loaded onto a special YouTube channel for others to enjoy too. What takes you just minutes will be life changing for Isaac and his family.

Be part of something special this Christmas. Help make Christmas special for Isaac.

Every picture and every video matters. We appreciate every single one of you.

Please spread the word.

Pictures and videos should be sent to HERE

With special thanks to Gemma Bryan and Kelly Kemp from It’s a Tink Thing for helping me admin this page.

What if you can’t be Santa to your children?

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I wandered into the shop happily but walked out with silent tears.The music played ‘Santa Claus is coming to town’ and it was just too much. What do you do if Santa Claus can’t come to your town? What if you DON’T want it to be Christmas every day?

What if you can’t be ‘Santa’ to your children?

I am not sure at what age it dawned on me that all those years of having gifts from ‘Santa’ were in actual fact from my parents, but once you know things change. For some it becomes anger that they were lied to, for others disappointment that life is not quite as fairy tale as they would like it to be, and for some it brings a greater respect for their parents as they realise how much they sacrificed to make them happy growing up.

Then you become a parent yourself and this whole ‘Santa’ thing becomes something altogether different. I must admit I have never made a huge thing of it to my own two children but somehow it just seemed the ‘done’ thing that even on their first Christmas (when they were in actual fact just seven weeks old!) they had something from that man in red.

And so it continued year after year with little thought or reflection. No-one wants to have the only kid who got nothing from ‘Santa’. Friends, family and even strangers spent the last week of the year asking children ‘what did you get from Santa?’ Parents smile smugly as children rhyme off expensive gifts and the entire contents of Christmas stockings to anyone who will listen.

I want my children to be able to do that. I want my children to be happy. But this year I can’t be Santa to them.

Now before you get all upset and feel sorry for my children this is not what this post is about at all. My children are blessed. They are happy, warm, loved and have an abundance of toys and games. They haven’t asked for anything hugely expensive this year nor have they demanded something that is out of stock the world over.

In actual fact they haven’t asked for anything because one is non verbal, they both have autism, and one has significant learning difficulties and developmental delay.

What if you can’t be ‘Santa’ to your children because they have no list yet again this year, they have no desire for toys or games and no idea what Christmas is about?

They would be happy watching glittering lights sparkle sitting on your knee or looking at a book together. They gain value more from the touch of your hand in theirs than a pile of neatly wrapped presents from a stranger who apparently came down the chimney during that night.

I can’t be Santa to my children because they have no concept of him. Sometimes that brings silent tears to my eyes when the world is full of parents rushing about checking off lists and hoping and checking for new stock online so as not to disappoint their child.

My silent tears are not for me though. They are in fact for those very parents, who like so many before them, are desperate to be the best Santa their child could dream of.

I am so incredibly blessed. I am so infinitely content. I can’t be Santa to my children but I get to be mum to them instead. I get to read the real Christmas story to them while they happily gaze at those twinkling lights; I get to sing carols to them while they smile up at me; I get to hear their laughter and joy all the time thankful for their health and happiness for another year. Those are things Santa could never bring.

Parents, enjoy being Santa to your children this year but never forget that your gift of time with your children and your love are things that may not be on your child’s Christmas list this year but those are the things they will remember much longer than any toys or electronics.

We can’t always be Santa and give our children everything in life they desire but that is OK. Opening up the latest ‘must have’ toy may bring immediate smiles but lasting joy and contentment comes from parents who provide all year round not just on 25th December.

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