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Coping at Christmas with Tourette's, PANDAS / PANS, OCD and Autism

Christmas is a time of joy for many people, but for families dealing with conditions such as Tourette's, OCD, Autism or PANDAS / PANS it can pose many challenges.

Difficulties that those with Tourette Syndrome / Tics may face at Christmas:

- Being around family members who do not understand tics can be difficult. During the festive season, many people meet up with family, but this can be hard if family don't understand that tics are involuntary and that we do not choose what we tic, this can cause the individual with TS a lot of stress. To combat this, it is important that the individual with TS is confident enough to stand up for themselves and explain their condition, or that an understanding family member can do it for them, or the individual could take a Tourette's leaflet with them to show family members who struggle to understand.

- Tics getting worse around the festive season. This can happen for many people and it can occur for a variety of reasons such as excitement, changes of routine, sensory overload from repetitive songs or flashing lights from the decorations or general overstimulation and the consumption of different sorts of food around Christmas such as cheeses and candy which could contain foods that the individual is sensitive to, therefore triggering tics. Due to the excitement worsening tics, some families may find that they have to 'play Christmas down' - this can seem quite disappointing, but you have to weigh out the pros and cons, is it worth someone getting really excited to the point where their tics are so bad that they can barely function? Due to the sensory overload and changes of routine, it is important for people to have a calm environment to go to where there are no decorations or overwhelming things so that people can get away from all of the commotion when needed and take a break. If you find that eating different foods around Christmas is making tics worse, then you could see what they are and that can actually help you to identify tic triggers so that you know what can be eliminated if tics get worse in the future so that they can be brought down when things are bad or it can show you what foods to limit so that bad tic phases can be prevented.

- School Christmas performances can be difficult for those with Tourette Syndrome as people may become self-conscious about ticcing on stage or may get anxious about the performance. It is important to be supportive and to validate peoples feelings about it, school performances can be a great opportunity to help someone grow in confidence and feel empowered that their condition isn't going to stop them.

- People ticcing what they got someone as a gift, I remember doing things like this (secret Santa wasn't that secret), it is because people may tic what they don't want to say, and the chances are that if something is meant to be kept a secret, the tics won't keep it a secret for very long. Some tics can also become Christmas themed, but in some circumstances the Christmas tics may be deemed 'socially inappropriate' if an individual has coprolalia, and this can make things difficult.

Struggles that people with OCD may face at Christmas:

- Decorating for Christmas can be incredibly difficult for someone with Obsessive Compulsive Disorder, it may cause people immense distress as things may need to be in a certain place and some families may not be able to decorate as it would take too long and cause too much anxiety. In my personal experience when I was younger, I remember it being Christmas eve and the decorations still weren't completely up as my OCD was making it virtually impossible, we had to leave the decorations for that year.

- It can be difficult for someone with OCD to enjoy Christmas if most of their time is taken up by rituals, and family may not understand it and think that the individual can 'just stop' which can make the individual feel misunderstood and guilty as they may feel as if they are ruining Christmas for their family when it isn't their fault.

- The change of routine and the uncertainty around Christmas time can cause a spike in OCD symptoms which can be very difficult to deal with, it is important that people can take a break when needed and have some time to themselves to manage their anxiety in healthy ways and do activities to help them feel calmer.

Struggles people with Autism may face at Christmas:

- Autistic people can have very rigid ways of thinking and this can make Christmas difficult as there can be a lack of routine and a lack of predictability. Some people may become upset if Christmas songs are played before a certain date, and some people may become stressed if they see the wrapping paper on a tube before it is used to wrap presents. It can be helpful to talk to the individual and ask them what would make them comfortable, see if you can have some sort of structure or routine in place to reduce distress.

- Some public places have huge Christmas light displays or lots of Christmas music playing in shops which can trigger sensory overload in sensitive individuals. It could be helpful to ensure that the individual can take sunglasses and ear defenders with them when they go to public places to avoid sensory overload which could trigger a meltdown and it could be helpful if someone had a place to go where there is less stimulation.

- Some autistic people may not know how to react when they open Christmas presents so people may express disappointment in ways that may be deemed socially unacceptable therefore people may seem ungrateful if a present wasn't something that they expected as people can be brutally honest and be unable to inhibit their reactions to something or may not realise that it may upset someone. People may also worry about the leadup to Christmas as they may feel anxious about how to react when opening presents as they don't want to offend people.

- Being around lots of people at events and at family gatherings - Many autistic people have a low social battery and varying levels of social anxiety, this can make socialising draining, stressful or seem like a huge chore, therefore all of the festivities may actually cause distress for an autistic individual. It could be helpful to allow the individual to cut down on social gatherings so that they have time to recharge before they reach burnout, or inform family members that the individual may need to leave suddenly to take a break and that this is completely normal and acceptable.

- People may be expected to hug and kiss family members, even when doing so causes intense anxiety and discomfort for some people and if it is forced then it may have no meaning behind it and teaches the person that they don't have the choice of what to do with their bodies and that they may have to do things that are expected of them even if it causes discomfort if they are pressured.

- School disco's or Christmas parties can be a huge issue for some autistic people due to the loud music, lights, social interaction and anxiety around the event, this can be incredibly overwhelming for an autistic person. If the individual truly doesn't feel comfortable going to these events, never force it, and if the individual does choose to go, ensure that there is a quiet space to escape to or that they have a buddy with them who understands what a struggle it can be.

General issues people may face:

- People may be expected to 'be happy' at Christmas, if people aren't then they expected to pretend that they are, but this can be unhealthy. People shouldn't be forced to pretend that they are okay over the Christmas season if they are not, and people shouldn't be accused of 'ruining Christmas' if they are struggling or have some form of meltdown. Christmas can be exceptionally difficult for some people, and if it is hard for you then you are not alone.

- Some people manage their Tourette's, PANDAS / PANS or ADHD etc through diet changes and eliminating food sensitivities, this can be very effective for some people, but family members may not understand it. Family members may be serving food that contains ingredients that the individual cannot consume and this can make someone feel left out, or even worse, a family member could be passive aggressive towards the individual for being unable to eat the food served. This has happened before in my experience as a family member was disappointed that I couldn't eat what they had severed, but then looked at another family member and told them that they are always welcome to eat stuff with her, and this probably wasn't meant in a hurtful way at all, but things like this can make someone feel left out. People may often get comments around the dinner table with family such as 'they have chosen not to eat', when having food sensitivities isn't a choice, or 'you need to just try it', or family members sneaking the food sensitivities into food to see if they cause a reaction (we can tell once we get home) or trying to convince the individual that there is no way that they can be sensitive to this. These things can make an individual feel very misunderstood, and it can be difficult if the young person is a child who is easily convinced or can't tell that their food sensitivities have been snuck into the food, as a horrible reaction can occur later on. Due to these issues it is vital to be as stern as possible with family members in enforcing the diet and ensuring that the food sensitivities are not consumed, see if it is possible to explain to them exactly what happens if the food is consumed and why the individual cannot eat it, and see if you can provide evidence and information to show them to see if it can help them understand.

- Some people may struggle to sleep around Christmas time due to anxiety or excitement. When I was younger, I was a very excitable child so getting enough sleep on Christmas eve was a bit of an issue, but lack of sleep can make symptoms worse, so doing something calming on Christmas eve or the days leading up to Christmas, or doing exercise during the day to burn off extra energy may be beneficial.

It is important to remember that Christmas doesn't have to 'be traditional', as for some people it could be very difficult with all of the decorations, socialising and changes in routine. Know that it is okay to do Christmas in whatever way works for you and your family and know that it is okay to struggle no matter what time of year it is, and that you are allowed to take time for yourself, set boundaries and do things differently.

I hope you all have a nice Christmas season, and that your symptoms don't make things too difficult for you, I will be available for people to contact through my Instagram page ticcers.unite if anyone needs help over the festive season. Merry Christmas!


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