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  • Jo Richardson Au

Autistics, PDAers, and Christmas

(Pathological Demand Avoidance)



Christmas; ‘the most wonderful time of the year’ as Andy Williams once sung. But, as we all know, with the run up to Christmas, family gatherings, gift shopping, cooking the turkey, fighting siblings, etc. Christmas can be a stressful time for everyone, but especially so for Autistics and PDA individuals.


I am going to go through the different stressors, triggers, and potential overwhelm or meltdown scenarios in this article, but please note that this is not, in any way, shaming anyone for wanting a fun, family orientated, traditional Christmas, or saying that this is not possible when member/s of your family are Autistic or PDA. This article is just highlighting where we struggle around Christmas and what you can do in order to make it more inclusive and supportive for the Autistics and/or PDAers in your life.


Change


Autistics are known to fear and hate change. They thrive on routine; knowing and understanding what is going to happen. It’s predictable and safe. The idea of things changing can cause a great deal of anxiety because it is taking them away from a safe routine, and throwing them into the unknown where they don’t know what is going to happen, what they will be required to do, or how to deal with things within the situation.

Christmas brings with it a great deal of change; at school, in the shops, at friends or families houses, and at home (if your family celebrates Christmas).


At school, activities change so that they are mostly Christmas orientated, decorations and a Christmas tree may be put up around the school. Most schools do a Christmas jumper day. Then you come to things like Carol Concerts, Christmas performances. All of these things can be incredibly overwhelming and difficult for Autistic and PDA children.




On a sensory level, having twinkling lights, or metallic decorations that shine in the light can be overwhelming for visual sensory avoidant children. Different smells can be an issue if the tree is real instead of plastic.


Christmas Jumper Day can cause both sensory and change orientated overwhelm as the children may not cope with the break in routine of wearing a full uniform that they associate with school, the fabric could be scratchy on their neck if they are tactile sensory avoidant.


Carol Concerts and Christmas performances can be incredibly problematic in that the children are often required to learn the words to several different songs, with accompanying movements, in a short amount of time; which can be a nearly impossible ask for those who have a slow processing speed, or cannot keep up with the rest of the class. This can cause a lot of anxiety, and well as feelings of shame, embarrassment, and depression; highlighting to them the difference between the rest of the class and themselves. The fact that they may not keep up with the rest of the class could cause them to be singled out by others who may ridicule them for it. This is all before the actual performance where they will be required to stand in front of parents or the rest of the school and perform the songs and actions that they have struggled to learn. This is a prime scenario for a meltdown of epic proportions. Also, sensory wise, the level of noise generated by a group of children singing or instruments being played can be completely overwhelming to children with auditory sensory sensitivity.


Where all of these changes are concerned, Autistics will need a lot of forewarning of the changes, with full details of what is going to happen and what is required of them. The use of Social Stories or transitional photos are very useful here, as are Now and Then cards.


PDA children do cope better with change, as they get very bored with routine and need to have variety in order to remain interested and involved. Though, with PDAers, we need to be in control of these changes. If told that they are required to be in a Carol Concert or Christmas Performance, you are likely to get a flat refusal to participate (unless singing or performing is something that the PDAer loves to do) or they will be incredibly disruptive throughout all practices, rehearsals, and performances. If it is possible to involve the child in the preparation of the activity; ask them to suggest what songs could be sung, or involve them in choreography.


The most important thing here is for teachers and TAs to be completely flexible where it comes to the Autistic and PDA children in their class. If the child does not want to join in, respect that decision. Do not push them or make them feel bad for not wanting to join in. Give them other options of things they can do, or worksheets they can work on whilst the rest of the class are busy doing a Christmas themed activity. Ensure that there is a quiet area for the child to go to if the level of noise or other sensory input is too much for them to cope with.


Respect their sensory needs and be completely adaptable.



Father Christmas



Most parents want to make Christmas a magical time for their children; Father Christmas being the most common choice.


However, there are many issues with the use of Father Christmas with Autistic and PDA children.


Autistics can be incredibly literal and the story of Father Christmas coming down your chimney on Christmas Eve night to leave presents for them under the tree is often seen as ‘there’s a stranger who is going to break into their house in the middle of the night, and leave an unknown item under the tree’. Can you see how that can cause anxiety for a child?


Going to a shopping centre/garden centre/other venue to visit Father Christmas can be a really magical, fun, and exciting experience for NT children. For Autistics and PDAers, this can cause sensory overload from flashing lights, noisy crowds or music, and the volume of people around them. Then you come to actually meeting Father Christmas, where they are asked to sit on a stranger’s knee (who has a tickly or scratchy beard) so that their parents can take a photo of them. From an Autistic’s perspective; this is a very odd and overwhelming tradition.



As a parent, I totally understand wanting to have the photos of your child with Santa, but from an Autistic child’s point of view, it is bright, unpredictable, loud, and overwhelming.


PDA children may well refuse to even acknowledge Father Christmas or become destructive in the venue if they are not the one who has chosen to do this activity.

The answer here is to give them the choice before you book it, give them plenty of warning or a countdown to when you are going, using Social Stories so that they know what will happen when they go there, take noise cancelling headphones for them, and be prepared to drop everything and leave the venue if it all becomes too much for them. Their mental health is far more important than the cost of entry to the event.


For PDA children, follow their lead and respect their choices. By not doing this, you are setting yourself up for a very tough time including meltdowns, complete demand avoidance, or verbal or physical violence.


Don’t even get me started on the pressures of the Naughty or Nice list. The anxiety this can cause Autistics and PDA children is immense, as there is no way to know where you fall on the list, and not knowing whether you will get presents or not can be unbearable. So please, just don’t. Or if you do, just say that they’re always on the Nice list. This list is a horrible manipulation tool and is cruel.



Where it comes to the inevitable truth coming out; that there is no Father Christmas, this can be particularly tough on Autistics and PDA children as lies and betrayal hit us incredibly hard. Many Autistic and PDA children can lose trust in their parents once they learn the truth and will just see it as their parents having lied to them for many years. PDAers, especially, are steadfast in their need for justice and truth, can take this very badly.


My advice, regarding Father Christmas, is to be honest from the start. With my son, when he is old enough to be introduced to the concept of Santa, we will explain to him that he is not real, but it is fun to pretend that he is and that he is the representation of the magic of Christmas. We will explain to him that other children may well believe in it so he shouldn’t spoil their fun by telling them the truth. It is just a way of preventing potential hurt and loss of trust in the future.


I do understand wanting to raise your children on the believe of Father Christmas, but just be prepared for any fallout when they do learn the truth.



Family Gatherings


This is the worst part of Christmas for me. Having no other choice than to spend time with people who I don’t have much to say to, and that keep talking to me. In these situations, all I want to do is escape. This is not an unusual reaction to family gatherings by Autistics and, especially, PDAers.


In these situations, we feel that we have to mask constantly; to keep up the pretence that we can cope with the overwhelming and constant input from people when we don’t really know what to say or how to interact with them in a way that they deem socially appropriate.




If you find yourself and your family in a family gathering, please keep a close eye on your autistic/PDA family member for any sign that they aren’t coping with the situation, so that you can leave with them when they need to.


Masking for a prolonged amount of time is incredibly draining and overwhelming, so please don’t put any additional expectations on them once they have left the gathering as they will likely need to retreat into their safe space to regulate themselves.


As before; follow their lead. Respect that they have limits in what they can cope with and be prepared to drop everything and leave if they need to.



Opening Gifts


A lot of Autistics and PDAers prefer to open presents on their own, as it can be difficult to hide how we feel about a gift (if it’s pants and socks when you wanted a good book, for example) and we don’t want to hurt the gift givers feelings. We feel a great deal of pressure and anxiety to elicit the correct response. It can be hard to hide our true feelings about a gift and opening a present can cause a lot of anxiety because your brain is racing “what if I don’t like it? How can I pretend that I do? Will they be happy with my response? What if it’s the wrong colour or texture? Etc.”




Also, opening a lot of gifts at once can be incredibly overstimulating and overwhelming.

My advice here would be to give them plenty of time to open presents, and give them space if they want to open them on their own. If the response isn’t what you were hoping for, just take it on the chin. It isn’t personal – it’s just an honest response. I would also advise other family members/gift givers that they may not receive the reaction that they are hoping for, and not to take it personally.


My husband, who is Autistic, has a very deadpan response when opening a present, even if it’s something he really likes. It can appear like he really doesn’t think much of the gift, even when he does. He just isn’t very good at expressing it at the time.


Try to keep the number of people in the house to a minimum as, the more people that are there, the more likely the child is to get sensory overload or a lot of anxiety.



Christmas Dinner



As you likely know, Autistics and PDAers can be very particular about food. One of the big expectations of Christmas is everyone sitting down and eating Christmas Dinner.


This is often an unrealistic expectation for an Autistic or PDA individual; especially if they are also ADHD.


My suggestion, regarding food, is to give them lots of notice of what the food will be, maybe let them try some of the food items before the day to see if they like it and so that they know what they will be eating on the day, and also be prepared to make a separate dinner for them, made up of food that they are comfortable with. At the end of the day, it doesn’t matter if everyone eats the same food or not. That’s not the point of Christmas dinner.


Christmas crackers can be problematic for Autistics and PDAers because of the loud and sudden noise when they are pulled apart. If you are adamant about having crackers, try to find some that do not have a loud snap, or give the child plenty of warning that the crackers are being pulled so that they have the option of leaving the room while it is happening.


Wearing a hat can cause sensory issues and can also be seen as a demand by PDA children. Please respect their choice whether to wear one or not. They are not being party poopers, they are taking care of themselves so that they don’t become overwhelmed.


If they struggle with eating around a table (if they are used to eating elsewhere) let them eat where they are most comfortable. It is a far better option than them being put in a situation that they may not be able to cope with.



Expectations


I LOATH expectations. Around Christmas, there are so many expectations put on people and children. These are practically unbearable for PDA children and they will only see them as a demand unless they are in control of the situation.


Ensure that your activities, etc. are fluid and adaptable as needed.


If someone puts expectations on me, my whole body is instantly repelled away from it. Nothing makes me want to do something less than someone expecting me to do it.

Most importantly; please don’t try to make your child feel bad if they feel unable to do something. They are not trying to spoil it for everyone, they are not deliberately being awkward, they are trying to protect themselves from overwhelm and meltdown.



I know that this article seems all doom and gloom about Christmas. I love Christmas, I always have. But I was lucky in that my family was small and we didn’t spend it with anyone else. That my parents accepted my limitations and when I wanted to just hide away in my room, that was ok.


Christmas can be fully enjoyed by everyone in the family, as long as you take their needs and limits into consideration and ensure that they have plenty of mental preparation time before things happen.


I do wish you all a very merry Christmas and a healthy and less apocalyptic New Year!

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