By Dr Michelle Garnett and Professor Tony Attwood.
Many people around the world look forward to Christmas, to family reunions, holidays, religious significance, and the social aspect of getting together with family and friends. But for an autistic person, Christmas can be a social and sensory nightmare. The lead into Christmas hikes up expectations of social gatherings. Family members expect attendance at their events, with high anticipation that the autistic person will enjoy the event, eat a particular food, and enjoy sensory experiences, for example, seeing flashing Christmas decorations and listening to family members sing Christmas carols off key, expectations that gifts will be appreciated with gratitude, and affection will be experienced and demonstrated.
For an autistic adult or child many, or all these experiences may be extremely stressful, exhausting and anxiety-producing. The autistic person may well attend and manage the tasks as expected, but later spend many days, and sometimes weeks, in recovery. Children and adults alike can feel resentment at what they had to endure to satisfy family expectations. In this blog, we will explain why these challenges are so exhausting and stressful for autistic people, and next we will provide nine important suggestions for autistic people to be able to survive Christmas. Whilst the post is written for an autistic adult to follow, the strategies for parents of autistic children are the same.
What is Autism and why can Christmas be challenging if you are Autistic?
Autism describes a different neurology, where the person thinks, relates, perceives, senses, learns, moves and empathises differently from non-autistic people. An autistic person has generally found something more interesting to do in life than to socialise. This is not to say that they do not enjoy socialising. The autistic person can be an introvert or an extrovert, and even introverted autistic people enjoy socialising with some people. Generally, if you are autistic, socialising takes considerable mental effort, and is therefore exhausting. A non-autistic person may have a socialising capacity that can be compared to a bucket, or even a well. Typically, in autism, that capacity is more like a teacup, and for some even a thimble.
A different sensory system can mean that the sensory input, including certain lights, sounds, smells and tactile sensations, including a hug, can be overwhelming, and sometimes painful. For example, an autistic person can experience very high levels of distress in response to what other people may consider to be manageable levels of noise. Being at a party where many people are talking and laughing can be considered by many an enjoyable experience, but for the autistic person the noise level can be experienced as painful, putting their body into a state of fight/flight where their autonomic nervous system cannot relax, and they experience a strong need to escape from the situation. The level of anticipation for sensory experiences that are distressing and painful, and the anxiety caused when they happen, are both extremely exhausting for the autistic person.
How to Survive Christmas
1. Know your socialising capacity
Socialising capacity can vary day by day, and includes consideration of the number of people present, who those people are, how long the event will go for and what activities occur. An ideal event for an autistic person is usually one-on-one with a much-loved and liked person, where the activity is mutually enjoyed. These parameters can mean that the event may even be replenishing rather than exhausting, and so may be able to be enjoyed for a longer time period. We recommend considering your social capacity for each potential event you may be expected to attend and plan accordingly. For example, if you know that it will take you three days to recover from staying for 3 hours at a party full of strangers, limit your time at the party to 1 hour, preparing an explanation why you are leaving early.
2. Understand and accommodate your sensory system
You may already be well aware of which sensory experiences are stressful, causing pain, anxiety and distress. If you are not aware of which but suspect there are some, the next time you are in a situation and notice that you are feeling overwhelmed, distressed, anxious or very uncomfortable, stop to notice the sensory aspects of the situation. Is there a particularly annoying noise? Are you too hot? Is there a particular smell or light quality that is difficult to bear?
Once you are aware of your sensory sensitivities, plan Christmas social events with the intention to minimise these experiences. Unfortunately, it is difficult to ask the host of a party if all the guests can speak quietly and that there be no or minimal music, but it may be possible to find areas at the party venue that are quieter and to decrease your own expectations on how long you can stay in a noisy venue.
You may consider taking along a Sensory Kit that includes a number of items to help you manage sensory overload. For example, sunglasses for certain light intensities at the venue, peppermint oil to mask noxious olfactory experiences, a damp face washer in a plastic bag to cool your face if overheating, earplugs for very noisy venues, peppermints to suck or crunch for distraction and a contrasting sensory input.
3. Plan and prioritise
Make a list of all the people who are important in your life, and decide on the ones you truly must see this Christmas. Put everyone else off until January, February or March.
4. Keep routines to maintain consistency
Most people are well-supported by a routine, but especially autistic people. One of the stresses of Christmas can be that the various extra events and changes can disrupt valuable routines that help the person manage anxiety.
Wherever possible keep to rituals and routines that support your body and mind to cope with stress and anxiety. These may include keeping sleep, eating and exercise routines, and ensuring to spend those 10 minutes at the start of the day tranquilly sipping tea whilst looking out at the trees and the sky. Use the same routes to get to the places you need to go, and don’t challenge yourself to change yourself or your routine whilst the mayhem that can be Christmas is happening.
One of the challenges of putting up Christmas decorations can be that the room looks different, and that can be highly stressful for some autistic children. One strategy is to choose to decorate only one or two rooms in the house and stagger the decorations, for example, putting the tree up one day, the decorations the next, the lights the third etc.
5. Be well
As much as you can, nourish your body and be physically active. Address sleep issues. If your body is well-nourished, well-rested and fit, your mind will function better allowing the possibility of making better decisions and having energy for coping with extra stress and stimulation. Autism means that your neurology, particularly your prefrontal cortex (PFC), is working differently, not defectively. Nourishing your body means that you are also nourishing your PFC. Your PFC is largely responsible for your executive functioning, emotion regulation and sensory modulation. Nourishing your PFC will lessen the challenges associated with autism.
Sleep is a common problem for autistic people. Read our blog on sleep for more strategies to combat this problem, Sleep and Autism or watch our online 3-hour course.
Physical activity has been found to be a highly effective strategy for managing the challenges of being autistic. Read our blog for more ideas and strategies, The Benefits of Physical Activity.
6. Schedule activities that will replenish your energy
Since social activities have the capacity to deplete your energy levels, it is important that you engage in activities that replenish you. Make a list of replenishing, restful, enjoyable and happiness-inducing activities. You may enjoy sleeping, binge-watching Netflix or documentaries, reading, gardening, being with your pet, colouring-in, cleaning your house or cooking. Rate each activity in terms of how replenishing it is from 0-100, with 100 being the most replenishing. Write these numbers in black. Look ahead in your diary or on the calendar App on your phone and enter all the activities that are “must-dos” from your priority list, including social and other “must-do” activities. Rate each one from 0-100 in terms of how exhausting you anticipate it will be, with 100 being the most exhausting. Write these numbers in red. Next schedule times to engage in your replenishing activities. Add up all the black numbers and then add all the red numbers. Which number is higher?
Next is the difficult bit. Make changes to ensure that the total of all the black numbers is higher than the total of all the red numbers. Only you know how to do this, and by making these changes to your diary and then committing to following the schedule, you can avoid exhaustion and potential autistic burnout.
The strategy described above was created by Maja Toudal of Denmark, and is called Energy Accounting. To read more about this strategy, and more activities to support energy we highly recommend our book, Exploring Depression.
We wrote our Exploring Depression book after six years of running and researching groups and individual programmes with autistic teenagers and adults, listening to them and adjusting the programme. The result is a 10-stage programme that can be completed at home with a mentor or in a clinical setting with a health professional.
Attwood, T. & Garnett, M.S. (2016). Exploring Depression: A CBT Self-Help Guide for Adolescents and Adults with Autism Spectrum Disorder Level 1 (Asperger’s Syndrome). JKP: London.
The online course on how to make the Exploring Depression programme a success:
Exploring Depression Training In A CBT Programme For Autistic Adolescents And Adults With Depression
7. Communicate
Once you have determined your social capacity and planned your diary leading into Christmas using Energy Accounting as described above, you will need to tell certain people in your life that you will not be seeing them, or that you will be seeing them in a different way, or for less time than they expect. If these people are not autistic themselves or do not understand autism, they may have difficulty accepting your plan.
We recommend developing scripts to ensure that the communication is validating and respectful. It would be nice if this type of effort was not needed, but it generally is because many people in our community still find it very difficult to understand autism. Recognising that some people will take time to understand will allow you to communicate with validation and respect for their points of view. A direct benefit to you for this method is that people will be more likely to be validating and respectful back, which translates to less tension in the relationship and therefore less stress from social interactions for you.
Parents of autistic children will also benefit from the creation of scripts to assist them to have the strength to break with family traditions to support their child.
We recommend using the following strategy to communicate your plan to your loved ones:
- Develop a script about what to say. We find a three-part structure helps,
- Validate
For example, “Mum, I understand that Christmas is an important part of the year for you because it is a time the whole family gets together, and you absolutely love seeing us all together. - Communicate how you feel.
For example, “When we are all together as a family, I feel overwhelmed and stressed because of the number of people and how loud the event is. It takes me a long time afterwards to recover.” - Ask for what you need.
For example, “This year I hope you will understand that I will not be coming to the big Christmas event, but I would still like to see you. May we meet at a different time just the two of us. I will highly value that time to catch up with you.”
- Validate
- Consider how you will communicate your script.
- If in person: consider body language, tone and volume of voice and timing. Your body language will need to be assertive, i.e. shoulders back, head up, looking at their eyebrows or tops of their ears. Lean slightly forward and curl your toes to ground your feet into the floor as you speak. Tone of voice will need to be firm and kind, but not doormat kind. The volume will need to be medium, not too soft, and not too loud. Try to time the conversation toward the end of the interaction so that you can make a quick getaway afterwards and will not be drawn into long discussions about your decision.
- If via electronic means: Be clear, kind, firm and succinct in your phrasing. Resist the urge to put in long explanations, but still follow the format. Be prepared for unhappy or angry responses but this is not a reason for you to change the decision.
- If in person: consider body language, tone and volume of voice and timing. Your body language will need to be assertive, i.e. shoulders back, head up, looking at their eyebrows or tops of their ears. Lean slightly forward and curl your toes to ground your feet into the floor as you speak. Tone of voice will need to be firm and kind, but not doormat kind. The volume will need to be medium, not too soft, and not too loud. Try to time the conversation toward the end of the interaction so that you can make a quick getaway afterwards and will not be drawn into long discussions about your decision.
- Rehearse your script.
If you are going to deliver the script in person, we recommend rehearsing it three or four times to develop confidence and skill in delivery. Rehearse either with a friend or partner or on your own. Rehearsing will vastly increase the chance you will be heard and understood.
Alternatively, if you are going to deliver your message electronically, consider asking a friend or loved one to read it first, to ensure you are speaking your truth, but kindly and in a way that validates the other person.
8. Utilise strategies to deal with guilt
Whether you are reading this as an autistic adult or a parent, once you have created your plan and communicated your boundaries to your loved ones and friends you may experience guilt. You may feel bad because of their response or because of years of being the person they want you to be and following the normally expected Christmas protocol in your family or friend group. We recommend that you acknowledge your guilt and recognise that guilt means that you care about the person. Remind yourself that you have communicated in a kind and validating way, and the feelings they are experiencing are their own, and not your responsibility. Remind yourself of the reasons that you chose this strategy, to look after your own energy levels so that you do not suffer poor physical or mental health outcomes. Remind yourself that it can take time for some people to understand who you are and how you are in the World, but they will get there. If they cannot understand you, for whatever reason, it is not your fault, and you may need to find people or spend more time with people who do understand you.
9. Practice self-compassion
Being autistic brings gifts and challenges. The challenges are typically in the social and sensory realms, which is why Christmas can be an utter nightmare. The challenges are real, and dangerous, leading to compromised physical and mental health if not managed well. We urge you strongly to practice self-compassion during this time. Take a moment to yourself regularly throughout the day, but especially when you are experiencing emotional pain, including being overwhelmed, stress, anxiety, fear, panic, guilt, self-hate, shame or depression and follow this script. Say the words to yourself using your own inner voice. Make your inner voice soft and encouraging, as if you were speaking to a frightened child:
This is a moment of suffering.
Everyone feels pain and suffering sometimes.
It is OK to feel pain.
Dearly loved one, I am here for you at this moment and always. I have your back. Take time to process what is happening. Something is wrong, but there is nothing wrong with you. You are feeling <label the emotion if you can or call it pain>. You will be OK, this will pass. All feelings pass.
Tips and Reminders for Surviving Christmas as an Autistic Person
In summary, the strategies for surviving Christmas as an autistic adult or as parents of an autistic child are:
1. Know your socialising capacity.
2. Understand and accommodate your sensory system.
3. Plan and prioritise.
4. Keep routines to maintain consistency.
5. Be well.
6. Schedule activities that will replenish your energy.
7. Communicate.
8. Utilise strategies to deal with guilt.
9. Practice self-compassion.
Christmas can be an immensely overwhelming and stressful time for autistic adults and children. Understanding why the challenges are there can help in developing a survival plan. Two key challenges can be the social and sensory aspects of Christmas events, including the expectations of other people, friends, family and loved ones. This article explains how to survive Christmas by knowing your social capacity and sensory profile, resetting others’ expectations in a kind way, managing any guilt, and treating yourself with kindness and compassion.
With a combined 80 years of clinical and research experience in autism, we now know that the best interventions are knowledge and attitude. Knowledge about autism in all its dimensions, and an attitude that respects, embraces, and celebrates autism.
We believe this so passionately that we have developed numerous programmes, resources and online courses to assist.
Our Next Live Events:
For Health Professionals involved in the discovery of autism for girls and women:
Masterclass: Diagnosis for Autistic Girls & Women
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