The Holiday season: a puzzle for parents of children with ASD ?
The Holidays are a time for reunions with family and friends, a time to take stock of the year, enjoy sharing gifts and meals with others, and a time for celebration!
Like with all children, meeting up with not-so-familiar faces can be anxiety-provoking during the holidays, especially when the pace of activities, the lack of personal space, coupled with lots of unfamiliar foods and music abound.
With a little planning, as well as a good dose of self-forgiveness, parents can ensure the holidays will be pleasant for them, as well as their children.
In this text, we have grouped the views of three people affected by Autism in completely different ways to show you different opinions and advice on spending the holidays with loved one affected by ASD.
The first person interviewed was Emmanuelle Assor, mother of a child with an Autism Spectrum Disorder (ASD). She is very involved and write about the subject because she hopes to drive parents, and hope for a better world begins with raising public awareness and understanding of developmental problems in children, problems that change lives.
Our second interviewee is Marie-Josée Cordeau, recognized blogger; she was diagnosed with Asperger's Syndrome at the age of 45. She is the author of the blog - marathon “52 semaines avec une autiste asperger" and memebr of "Aut’créatifs”, the first Quebec neurodiversity movement. Since 2012, she contributes to the magazine distributed by the TED Express Arated Montérégie. She is currently writing a book on the social codes for individuals with autism. She occasionally publishes Québec advocacy articles about autism to the general public on the Huffington Post and speaks at conferences, such as the “Salon de L’Autisme” that took place at the Cosmodôme last October. Marie-Josée’s personal mission is to raise awareness about Autism Spectrum Disorders as well as bridging the thinking and functioning of individuals with Autism and the typical thinking and functioning (non- autistic).
Our last interviewee is Nathalie Garcin, Nathalie Garcin, PhD, is a clinical psychologist and the Executive Director of the Gold Centre. Since 2010, Dr Garcin has been developing the Gold Centre’s not-for-profit endeavours, through the generous funding of the Miriam Foundation, with the goal of offering services, research and knowledge transfer activities for people with ASDs and developmental disabilities, as well as leading research and knowledge transfer activities in relation to these matters.
These three experts were willing to answer our questions and here's their advise.
What are the difficulties faced by a person/child with ASDs during the holidays?
"During the holidays, a person with ASD will inevitably live several levels of difficulty. As a parent of a child with ASD, we must accept that at this time of the year, we see a lot of people, which certainly does not appeal to our child.”
Celebrating with friends, colleagues and even family members that we don’t see very often is equal to seeing many new faces, hearing loud music, seeing dazzling lights and new places... This is not very pleasant for a child with ASD. Clearly, the holidays can cause stress to the child and the parent if they are not prepared."
"During the holidays, many situations can be difficult! What is most disturbing to me, are all the sensory "attacks", combined with changes in our routine. The holidays alone changes peoples routine (parents holidays during the week, school children or child care holidays) this is the time of the year were unexpected visits arise.
At the sensory level, there is more noise because we are led to frequent more people at a time, in an environment that’s joyous but noisy, with music, sudden laughter, sounds of dishes and an additional amount of noise arises when family and friends organize games! There’s also a lot of physical contact that can be very overwhelming for some, kisses and hugs come from all sides and are sometimes too rough and too sudden. There’s also visits that often last for several hours in a place that is not too familiar, whether it’s in a hall or at an aunt’s house, not knowing when we can return to our things and to our own comforting universe.
As the child grows and at adolescence, social difficulties can lead to isolation and more, and the child may be very anxious at the idea of being in an environment where it will interact with others. In short, everything related to the holiday season can cause anxiety."
How to manage too much novelty and lack of daily routine?
"As a parent of a child with ASD, several years of experience allows me to say that for us, the best thing was to not make too much of it. We arrived at the conclusion that an activity per day is sufficient: go out and play, make a snowman, go skating, go to the Biodome or swim at the pool. This is the same for meetings or outings with family and friends. No more than one social event per day, preferably, we invite our friends and family members to our home, in order to not destabilize our child who loves to play with his things in the comfort of his home. In addition, when we have guests, we give him permission to retire to his room or in the room of his choice if he’s disturbed by excessive noise or by the presence of too many people. We understand that he needs his space to feel good.
Another thing that has helped us was to prepare social scenarios with pictograms to prepare our child for the activities of the day. This way, he knows as soon as he wakes up (for example) we will go to the pool then visit grandma or that we will stay at home but in the evening we will go to his grandparents or friends (and we show him a picture of the people we'll see). However, we try not to go out at night, except for place that he already knows. For the bigger holiday gatherings, we hire a babysitter that he knows and only leave once she arrives.”
"Most people on the autistic spectrum do not like surprises. It is important to notify in advance when they will attend a party, the place (and if they know the place, talk about fond memories of it), people who will be present and if we know the course of the evening, it’s best to advise them (in words or by pictograms). It may be interesting, depending on the age of the child and the severity of his autism, to determine in advance the departure time, or a mutual sign to advise when the evening has become too difficult.
When the child is not at home, it’s best to prepare a space (a more distant room, an office, a small room in the basement) where they can be isolated from the noise and play alone or with one or two other children, but in a quieter area and with less aggressive lights.
If he is at home, we must also remember to allow him to go to his room to rest or play more calmly, without requiring him to stay all evening in the presence of too many people.”
The dishes aren’t always chosen by the parents, what’s the best way to prepare for the change?
"Regarding the change of meals, our child being fairly rigid on the diet plan, we plan meals prior to bringing him anywhere. Since he eats a lot of pasta, usually this is not very difficult to accommodate because it is always available at restaurants or we are able to ask close friends to prepare it at their home. With that said, we always prepare a small lunch box with things that our child likes before going out. Therefore, we aren’t caught off guard if there isn’t any pasta at the restaurant or at our friend’s homes."
"Parents know the dietary constraints of their children, but even if the child likes a certain type of dish, if it is not prepared in the same manner and doesn’t taste the same as usual, this could be problematic. Some children accept new dishes, but not all of them and not all the time. If the child is old enough to understand, we can mentally prepare them by explaining that the food will be different from when it’s prepared at home.
Why not bring a simple lunch from home that a child likes (a sandwich, yogurt... ) therefore if he doesn’t want to eat the food offered there, then he can eat his lunch and everybody is satisfied.
It is probably best to advise guests of this possibility as well as a possible reaction of a child with no filter that might verbalize that the meal is not good, is too fatty or he will not eat it. This will avoid possible discomfort and make sure that the person who worked hard to prepare the meal doesn’t take these remarks too personally."
Finally, in your opinion, what are the best gifts to offer for the holiday season?
"Giving a gift to a child's with an ASD is a complex task! It’s complex because he doesn’t like novelties and would reject your gift in the first place or because he has restricted interests (for example, he only likes video games). So if you offer him a car, but he loves marbles, he will not play with the car even if it’s a beautiful one. Maybe in a few months or years he will, but until then, there is no point to accumulate toys that are useless and take up too much room in the house! My attitude to this dilemma has been to offer my son very few toys but well-chosen ones and consider his current interests. I relayed his current interest to our friends and members of our families to make sure we don’t receive items that we will never use. I have prepared a short list of his favorite things and what he needs (for example this year I choose skates so we can go skating together for the holidays!).
Since a child with ASD is often not aware of the cost of items, I find it unnecessary to spend a fortune to please them. Sometimes a well-chosen toy will stimulate more than most new toys that will frighten and discourage. We always have to put ourselves in the child place and think of what might please him as it may even be a used toy bought in a bazaar!
To replace the often unnecessary or left behind gifts, I think we should focus on activities with family or friends. Going to the cinema, theater or planetarium costs as much as a Mr. Potato Head that will probably have no interest for the child. In our case, our son has all the toys he can dream of and most of them he doesn’t like or has no interest in them. Why not organize a small family outing accepting that this activity will be a small outing just to take a break from the everyday?
Obviously, with a child with an ASD, it’s best not to engage in a big outing that’s far and complicated with lots of people but rather organize an outing of an hour preparing the child well with pictograms and accepting that it might not go as planned. Who knows: maybe our children will be amazed by the screening of a short film musical or giant puppets that he had never seen before? Even though stepping out of the everyday is sometimes complex and stressful, it’s worth its weight in gold. Obviously, there is no magic recipe for the holidays and so-called "vacation": you can also stay at home and relax and stop running around to all the appointments required for our children within the entire year... One small step at a time and one activity per day remain my motto !! "
"I'm not an expert in purchasing gifts for children, but I always tell myself that as with any child, it is better to go with what they really love. An autistic child is less attracted by what is fashionable "just because it is fashionable". He will love something or he will not like it, but in a very personal way.
Going with his particular interests is always a winner. A book on a subject he loves, a sensory toy if that's what he likes or an educational game with a theme that he particularly appreciates.
I remember when I was a child, I did not like surprise gifts. If I did not like the gift, I verbalized it because my lack of filter made it impossible for me to pretend to be happy if I wasn’t. To overcome the disappointments and tears, my mother asked me to circle in a toy catalog what I liked and she chose from what I had selected. Even now, as an adult, I prefer to know in advance or choose my gifts then receive a surprise and be disappointed."
Finally, here is the professional perspective of Nathalie Garcin:
"From a clinical perspective, there is no “one size fits all” approach. The best advice for a happy holiday season can be summarised this way:
1) Go at your and your child’s pace
As with anything in life, don’t bite off more than you can chew. If you’ve planned one activity in one day, that’s more than enough for any child.
2) Planning will help to adjust to change
Children find security in familiar routines and in knowing what is coming. Let’s not forget to use the tools we have at our disposal to help with transitions and understanding the social world that surrounds us during the holidays. The use of visual calendars, with the activities displayed for each day, or social stories for our children who can understand them, or pictograms or pictures displaying familiar faces and places are great tools to help us with those more difficult to manage transitions
3) Include activities that are naturally motivating for your child
We all have preferred activities, hobbies that motivate us and that we find rewarding. During the holidays, your child will be exposed to many new activities, so don’t forget to include activities that are pleasurable for your child- as well as the parent! A warm bath, a favourite transitional toy, an object that will soothe the senses, that favourite movie that your child has seen too many times… whatever the activity may be, it can help to soothe and add pleasure for your child. Moreover, ensuring these preferred activities are available or planned for, can help when in a stressful situation.
4) Finally, don’t sweat it.
Holidays, unfortunately, have become a time where we try to “pack it all in”, at time when our expectations run high, and where the social environment is less than predictable. These factors can be difficult on any child. Even if you’ve prepared and you’ve planned thoghtfully, your child may still have that dreaded meltdown. Set your expectations realistically. Most likely, you’ll be with family and friends, who’ve experienced difficulties with their own children. Take the pressure off yourself, tomorrow will be another day."