Guest Posts

Ben on truck
Nov 28

This guest post is authored by my friend Katie Pass, whose five-year-old son has recently been diagnosed with high functioning autism.

Christmas will be low-key in our house. We will have no tree, no decorations or fancy lights, no Santa visits or busy shops and not even wrapping paper! Even the simplest of these things cause confusion and distress to my autistic son. Our Christmas may be different to yours but we are not unique. Around 1 in 100 children has autism in the UK. They, too, will find the unfamiliarity and change surrounding Christmas bewildering and upsetting”.

This is one family’s description of their Christmas from the National Autistic Society.

My Christmas this year will also be different, as it is the first since my son was diagnosed as being on the autistic spectrum. Ben has high functioning autism. He can communicate and generally interact with others, and in fact if you met him on a good day you would think he was perfectly ‘normal’. But he isn’t. Our Christmas won’t be as low key as the one described above but it will take some planning to ensure Ben is comfortable.

We won’t be Christmas shopping as Ben struggles with noise and crowds. I thought I wouldn’t be able to take him to see Father Christmas but I have found somewhere where you can book a timeslot which is perfect for a child who can’t deal with the noise, physical contact and stress that comes from waiting in long queues!

Christmas Day will start when Ben says so – given that he doesn’t sleep that could be anytime from when it starts to get light! There will only be family for the Christmas period. The noise and chaos that comes with Christmas is more than enough for Ben to handle without ‘strangers’ appearing.  The day’s events will be staggered and on Ben’s terms. If he can’t handle anything at any point it stops.

We will be having Christmas dinner, but not with Ben.  We are staying with my mum who is an amazing cook, and the table will be heaving under dishes full of different flavours and smells – none of which Ben will touch. Certain smells make him physically sick and he has issues with textures of food. For him it is impossible to combine flavours, potatoes in any form are a big ‘no’, as is gravy. No two different foods can touch on his plate. There is a limited possibility of him sitting at the table with us as he just can’t cope in this type of social situation. His lunch will consist of a bowl of pasta maybe in front of the TV, on his own, before the rest of us eat .

Presents are an entirely different issue. Ben understands at Christmas you get presents but is often overwhelmed by the whole production that goes with present giving and receiving. For him opening presents is a bit like taking off a plaster – you rip it off as quickly as possible and discard it. A toy that might be appropriate for a five year old won’t be appropriate for Ben.  Certain things just frustrate him; for example Lego is a nightmare as he doesn’t have the fine motor skills to build with it and becomes so frustrated. I am fortunate that my family understand his needs, so they ask for suggestions – there is nothing more frustrating for Ben than receiving a present that is inappropriate to him. He is not being ungrateful he just doesn’t understand what he is supposed to do with it.  His world revolves around trains and tractors and trucks, not “Ben 10” or complicated, noisy toys that need to be built. It must be instant access. To a point we remove a lot of the packaging before we carefully wrap it and stick with the smallest amount of Sellotape possible so that he can open it easily.

As much as I enjoy this time of year, and go out of my way to ensure my older daughter gets to enjoy a ‘normal’ Christmas…for me there will be a sense of relief when it is all over, just so that Ben can get back to his normal routine.

About the Author

Wendy McAuliffe

Social media & online PR consultant and trainer, and ex-journalist. Founder and Director of Populate Digital and Mum of two. Living by the sea in Bournemouth. @wendymcauliffe.

  • Lizzy

    Wow! You are an amazing Mum!
    I’ve worked for only a short time with children who have a high degree of Autism, and always felt like I was walking on glass with them (but then that was in a classroom situation, with about 5 at the same time), but I am amazed by what you have done and planned to help Ben through what sounds like a very difficult time of year.
    Hope this doesn’t sound rude, but wow!
    Hope you’re Christmas isn’t too stressful and you have a lovely time.

  • Amuellner

    Hi there, You said that Ben doesn’t sleep and I was wondering if you have tried a weighted blanket? Worked wonders for my Autistic son. Just a thought…

    • Globalgirl

      Also, studies have shown that Melatonin works wonders with sleeping disorders in children with Autism.

      • Anonymous

        Melatonin has saved my sanity :)

  • Janeneunruh

    My son is now 21 and autistic, I have to say I do not totally agree with this. I understand the crowds and shopping and even going to see Santa Claus may be over whelming, but at the same time why wouldn’t you possibly get a friend to dress up like Santa and see your child one on one and let your child slowly become used to the idea, and even before that introduce him to Santa threw the many cartoons that are out there. You could decorate a tree but as you do it let your autistic child feel and see every ornament these things may take some extra time but eventually your son will be in a situation were he may be in a crowded area like a child’s doctors office with many kids and lots of noises around, your child may get sick and your doctor may be on vacation and have to see a stranger. One of the biggest things my son had to go threw was as he went threw school was changing teachers but we had no choice. Over sheltering your child can make things worse. Having a child with Autism is about taking things slowly and having a great deal of patience.

    • John Commiato

      wow I just completely agree …I share a lot of the same ideas as you do on how to approach helping them begin to get comfortable being uncomfortable….. I’ve personally watched my son go to a water theme park around crowds of people and stand back out of the crowd with him for about a hour and not thinking he would ever step foot out in the crowds of people to go play but was amazed that by the end of the day he was getting on everyride he could as many times as he could …it was trully an experience…

    • Globalgirl

      You are right on about the oversheltering! Parents with children with autism have to keep exposing their children to things the child doesn’t like because perhaps one day, he or she will get used to the things they abhore and eventually come to like it or tolerate it.

  • Whitedove1968

    i also have a highly functioning autistic child. we did have christmas and family over and went to family. he did stress at times and when he needed me for reassurance i was there. he has learned to cope and prepare for life this way, in a private setting, so when he did have a stressful moment someone was there. he has just recently graduated from a major university in chicago with a bachelors degree. yes, he is a very private person, i agree. but had i sheltered him from all stressful situations instead of teaching him to cope, he would not be where he is today. i’m not going to be here forever and he will be able to be out in the real world without me. i have watched many many videos on youtube of people such as your son and my son who have learned how to cope, either because no one knew they were autistic or because that’s what they were taught. in my opinion, your doing this child a great disservice by NOT teaching him to cope with normal surrounding and events that happen in life. small child are more resilient then you might think. him trying to learn this as he gets older is worse because he will have already become accustomed to being sheltered and then to have such a major change of coping. teaching him coping skills and what to do when he’s in such a situation. he is who is. that will never change, but that doesn’t mean he can’t be prepared to live in the real world. great luck to you. another mother of an autistic child.

  • John Commiato

    My son JonJon shares a lot of the same charectoristics as the 10 year old by Ben talked about in this post . My son is also 10 and he has to have certain konds of gifts..but my son loves the decorations and lights …he thinks hes suppose to play with all of them …LOL …he is a very affectionate boy with certain people but not very social at all in crows or lots of noise…No motor cycles 4 wheelers all tho he does like to ride on our jet ski and i think it has a lot to do with the water wich is something he has no fear of and has just learned to swim without his floatties this past summer… other than that , gameboy “supermario” or any kind of karate , computers “utubegames” trampolines for hrs. and spongebob cartoons is the only interest he has …We Love Him ..Never A Dull Moment !!!!!

  • Anonymous

    Do I adapt some things at Christmas? Sure I do. Do I try to teach my child to cope in situations he will have to face in his life, yes, I do that as well. What most of us strive for is to find the balance between trying to allow our child to enjoy the holidays while not disrupting the season for everyone else.

    For example, our family went to see Santa at a mall that wasn’t crowded and allowed us to take our own photos so there wasn’t the frustration of trying to get him (and everyone else) to sit and smile at a specific moment.
    For my son an advent calender has been very useful. He needs something concrete to understand how long is left. We talk about how many sleeps until Christmas every night. This helps alleviate some of the frustration over having to wait. As well, a variety of easy crafts done over the month of December helped him to feel that Christmas was on it’s way and he was part of preparing for it, not just waiting for it to happen.
    On Christmas day he will eat at the same time as the family, but likely not at the same table and certainly not the same food, as the smell of many food types will make him gag.
    Truth is, I adapt at Christmas time for myself as well. I hate crowded malls, so I shop early in the season, and in the middle of the day. I have a lot to do, and find keeping a calendar and updating it helps me feel that I’m on top of things. For my son I simply try to employ the same logic, search for methods to help him cope with the stresses of the season as I do for myself.
    Those of us who have children on the spectrum would probably be better served by suggestions rather than judgements of what we are doing “right” or “wrong.” We get enough of that from people who don’t understand what it’s like to have an Autistic child. I think it’s also wise to remember that there is a wide range on the spectrum and should be compassionate about the fact that others may have a different, and sometimes more difficult, set of autistic traits to have to adapt to.

  • Katie

    I appreciate everyones comments in regard to my piece I wrote about my son. As I wrote in the blog, Ben is 5 and this is his first xmas with his diagnosis. Both myself and Ben are learning new things every day about what it means to be on the autistic spectrum and how to adapt to situations in general. I take onboard comments about sheltering him and being overprotective and hope that with each xmas we get the opportunity to expose him to more of the traditions that go with this (and other) holidays and help him to adapt to new situations.

  • Pingback: Autism Christmas Ornaments | Autism Jobs()

  • Helen

    I regularly check in to this blog but have only just caught up with this post – sorry!  I found it fascinating, as unlike the other people who have commented, I have not got a child with autism and have no experience of what it must be like day to day.  However, I am a mum and I think that sometimes you just do what you feel is right and best for you and your child at the time.  There is no manual and what works for some families may not work for others.  We all get it wrong sometimes (most?!) and get it right sometimes (rarely?!).  When I read the post I was full of admiration and when I read the comments, I thought maybe they had a point.  Either way, I think ANY mum trying her best is worthy of an award and a mum of an autistic child probably deserves an even bigger one no matter what decisions they make for the best reasons.

  • Sally Reeves

    its nice to know that im not alone! this is pretty much how my christmas has been this year! =D

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