Christmas can be a magical and exciting time but for many autistic children like my son Tom, the festive period is anything but wonderful.
Tom struggles with changes to his routine, worries about not understanding what is happening and why his usual activities and food are different. When he was younger, if visitors came to the house or we visited family and friends he’d become confused and unsettled as he didn’t know what was expected of him. He was often tearful, frustrated, and distressed.
We tried lots of things and now we know what to do to help Tom and our family have a more enjoyable and relaxing Christmas. As he turned 21 this year, Tom shares 21 of his favourite tips to help you and your family prepare for an autism-friendly Christmas.
#1: Decide what’s the best way to ‘do’ Christmas for YOU and YOUR family.
Making a plan in the following way helped us:
✍🏻Grab a notebook and pen and have a think about the whole upcoming Christmas period.
📝Make a list with four columns headed Achievable, Desirable, High Risk, Impossible
🤔Think about what is planned or expected over Christmas and place each activity under one of the four columns
👏🏻Don’t aim for 💯%- if you can manage most of the achievable, one or two things in the desirable column and come through everything in the risky column you should rightly feel proud.
Don’t give up hope if nothing goes to plan. In our experience, over time many of our risky column activities became achievable.
#2: Make a personalised visual ‘All about Christmas ‘guide.
Showing all the different things you might do at this time of the year this guide could include Christmas objects, Christmas food and activities that only happen at Christmas e.g., meeting Father Christmas or pulling Christmas crackers
You could make one together like mum and I did with drawings. A photo collage, Christmas scrapbook, or pictures of your family celebrating Christmas also work well.
Like many children with autism, I tend to forget social information, so a permanent visual guide was a great way to remind me what Christmas looks like.
#3: Take time to talk with your child about things that may be worrying them
I was worried about not having my usual breakfast – jammy toast and hot chocolate on Christmas day.
This might seem a little thing to worry about, but it was a huge feeling for me. Mum explained to me that I would have my usual breakfast and that made me feel better.
#4: Make realistic plans for shopping.
Mum tried to avoid taking me shopping during Christmas. The noisy crowds, strong smells, and bright lights in the shops made me feel confused and worried. If she couldn’t find a babysitter, we used to go at quieter times of the day with plenty of snacks to distract me!
Online shopping now makes things much easier
#5: Talk about social rules and different expectations that people might have around Christmastime.
When I was younger, having visitors to my house or going to visit family and friends over Christmas made me feel worried. I didn’t like being out of routine and felt anxious about what I should say and do. Practicing what to say when meeting people and having pictures to remind me what would happen and how I should behave, for example saying hello, please, and thank you really helped.
#6: Talk to your child’s teacher so you know what different things they might be doing and when.
Mum used to have a meeting with my teacher and support assistant to find out what activities were going to be happening and how best to help me.
By letting us know when there would be changes to my routine, for example, doing Christmas crafts instead of my usual lessons or practicing for the carol service I could prepare myself for the changes and didn’t get as anxious.
Planning for the Christmas party so that I could have my favourite drink and a quiet area to go to when things got too much also made me feel much calmer about going to the party.
#7: Make a list of special interest gift ideas that you can suggest to relatives and friends when they ask what presents they can buy.
When I was younger, I didn’t get excited about getting toys as presents. But I loved getting things about what I was interested in, for example, lorries and trains. Activities based on my special interests were also good ideas.
Among my favourite Christmas presents were a pillowcase with trains on, a trip to the railway museum and of course getting lots of Eddie Stobart lorries!
#8: Make sure any visual schedules are updated to show any changes to routine or special Christmas events.
Sudden changes to my usual routine like a last-minute practice, craft activity or even something small like moving to a different classroom or popping to see a friend can upset me and cause me to worry. It’s always better to give me as much warning as possible of any changes so I can prepare and cope with them.
It can be exhausting to keep up with all the different things that are happening. A TomTag visual timetable really helps to show me what is happening and when. It’s perfect for use at home and school.
#9: Involve your child in deciding where the decorations should go.
I get worried when there are unexpected changes in things around me. So, if Christmas decorations suddenly appear at home or school, it can shock me. Involving me in deciding where the decorations go and letting me help decorate the Christmas tree can help me feel less overwhelmed.
It’s also important to let me know when the decorations are being taken down too. It’s less stressful for me when there is a warning and a reason given.
#10: Keep sensory armour to hand for trips to the shop, parties, and other festive events where there might be sensory overload.
Loud music, twinkly lights, everything and everyone looking different can be overwhelming for me.
Sensory armour can help and includes:
🎧Headphone to cut out some of the noise and sound. I can also listen to my favourite music to help reassure me when things get tricky
🧢A cap to help shut out some of the flashing lights
🕶Dark glasses to reduce light intensity.
#11: Let your child wear their Christmas costume or party outfit around the house
When possible, buy or make your child’s Christmas costume or party outfit early.
Let them wear it around the house for say, 5-10 minutes over a few days to help them become comfortable with how it feels.
I don’t like the feel of any clothes made out of wool or anything with a label in it as it feels scratchy on my skin. Fancy dress costumes are also a no-no. I much prefer to wear my own clothes. I don’t mind wearing a Christmas hat– if the label is cut out and I don’t have to wear it for a long time – just long enough for mum to get some photographs is usually ok!
#12: Use an advent calendar or other visual to prepare for and understand the countdown to Christmas.
I used to find traditional advent calendars quite fiddly. When I was younger, we had a large fabric Christmas tree with 24 large, numbered pockets. Each pocket contained chocolate that I could easily reach.
Other ways to make an advent calendar include a Christmas Book Advent Calendar – unwrap a Christmas book each day, little gift boxes filled with knick-knacks, or a treasure hunt with clues.
You can use TomTag to make a fun countdown too!
#13: Prepare your child for how to greet family and friends
Prepare for visitors and visits from family and friends by talking to your child about who they are going to see and how to greet them.
I spent lots of time practicing with mum how to greet people. Being hugged makes me feel uneasy so I learned how to shake hands with friends and family. I do love being hugged by my sister though!
#14: Discuss the escape plans that it’s ok for your child to use if everything gets too much for them.
It was so important for me to know that if things got too much for me there was a quiet space I could go to ‘escape’ Christmas. When I was younger I agreed with mum that I would show a red card when I needed some time out in the quiet space.
#15: Be prepared that your child might not be able to sit at the table for as long as would like (or maybe not at all).
Be upfront about this with your family and friends if you’re having Christmas dinner at their homes.
I’m happy to sit at the table now for my meal but often need to leave the table when I’ve eaten for a movement break. Knowing that this is OK and that I’m not going to be forced to sit at the table means I don’t get anxious. When I was younger, I had a favourite book or toy to keep me distracted during mealtimes.
#16: For children who won’t eat a traditional Christmas dinner prepare and freeze their meals in advance to reduce the workload on the day.
I used to be a very picky eater. This was because I don’t like changes. I liked things including my food, to be predictable. Having the same foods such as pasta, bread and chips meant I didn’t have to worry about new tastes or feelings in my mouth. I preferred to eat foods that I knew tasted and felt the same. I also avoided eating meat as this was difficult for me to chew.
My favourite Christmas dinner used to be chicken nuggets and chips – Mum always put some peas on my plate, just in case!
As I’ve got older my fussy eating has changed. I now love a traditional Christmas dinner and my favourite vegetable is broccoli!
#17: Playfully and patiently practice Christmas traditions
These could include receiving and unwrapping presents, pulling crackers, and wearing hats so that your child knows what to expect and can join in.
Here are some things that we did to help me understand what happens at Christmas:
Play wrapping games. Mum wrapped up some of my things – clothes, books, toys and I had to open the paper and find what was inside. We’d play a guessing game by trying to guess what was inside by the feel and shape of the parcel. We used to have something square, round and rectangular so I could also practice my shape names. Chocolate was always my favourite thing to unwrap!
Pulling crackers. We bought some cheap crackers and practiced pulling them, so I got used to the ‘bang’ sound and it didn’t come as a surprise. I got used to wearing the paper hat from the cracker and looking for the joke inside them.
#18: Think and talk about the sensory overload and extra social demands at Christmas parties.
The school Christmas party used to be very overwhelming for me. Loud music, everybody looking different and the expectation that I should be joining in with dancing and games.
These things helped the party be less stressful for me:
📝Using a visual schedule showing me what was going to happen
🤗Having a ‘buddy group of friends to help me join in
🕺🏻Practicing dancing at home!
🤫Making sure there was a quiet place for me to go to if things got too much.
#19: Some children may be overwhelmed by many presents all in one go. Try introducing gifts one at a time over the day or over several days.
Alternatively, adopt an advent style approach and bring out a small gift each day on the run-up to Christmas day.
On Christmas day, I used to stagger my present opening. I opened some presents in the morning and some in the afternoon. Often, we went on holiday at Christmas time so I would open most of my presents after Christmas once we were back home and in my own time. This worked well for me as I didn’t feel stressed about deciding what to unwrap and doing it all at once. I could enjoy opening my presents.
#20: Leave some areas of the house undecorated so there’s always a quiet place for your child to retreat to if they need it.
I liked having a Christmas-free zone to escape to when I got fed up with the flashing lights, glittery things, and loud music around the house. This decoration-free space helped me feel calmer when things got too much.
#21: Many autistic children don’t like surprises so it might help not to wrap presents up.
You could also just tell them what’s inside or use clear cellophane or plain paper for wrapping with a picture attached showing what’s inside.
When I was younger, it didn’t bother me to get a wrapped present, but I didn’t have the ‘surprise feeling’ you usually get before you open it. I didn’t really understand the idea of a surprise, so I had a mixture of wrapped and unwrapped presents.
I used to love anything to do with numbers so receiving a large pack of number cards one Christmas was a lovely surprise!
Tom and I would love to know any tips you have to make Christmas more autism-friendly?
‘While we try to teach our children all about life, our children teach us what life is all about‘ ~ Angela Schwindt
My son, Tom, the inspiration for TomTag visual supports, turned 21 years recently. It seems like only yesterday that he was a new born baby snuggled in my arms. Like any new mum it felt like the beginning of new things. A rainbow of hopes, dreams and possibilities spreading out before us.
Autism cast a shadow on that rainbow.
But the rainbow was always there. It just needed to be looked at from a new perspective. With the understanding that hopes, dreams and possibilities mean different things to different people.
Over the last 21 years Tom has taught me so much. Not just about lorries, swiss trains and football 😉 But, about the important qualities in life – patience, resilience, humility and determination. That each of us has a right to be here, to be heard and to live life to its fullest potential.
To celebrate Tom turning 21, I’m sharing 21 lessons I’ve learnt from living with autism. I know what a rollercoaster it can be parenting an autistic child so I hope our experiences bring some positivity and hope to those of you who may be going through similar experiences. Please know that however hard it is now, with time, things do change, the shadows lift and the rainbow reveals itself🌈
Lesson 1: Let Go Of Expectations
As a new mum, ‘What to Expect the First Year ‘ by Heidi Murkoff was my bible for the first 12 months of Tom’s life.
Like every new mum, every month I proudly ticked off Tom’s achievements– sitting, crawling, first solid food. Then I almost burst with pride. Aged 10 months, he pulled himself up on the sofa and walked across the room!
But when I took him to the playground, I noticed that Tom ignored the other children. He wasn’t interested in playing on the slides and swings. Instead, he spent his ‘playtime’ picking up handfuls of the gravel and watching it fall between his fingers.
I was a bit confused by Tom’s reaction and obsession with the gravel. I felt sad for him that he was missing out. Over time I found the joy at seeing him engrossed in HIS form of play. It was an early lesson in letting go of MY expectations. Now I understand that playtime was always going to be a sensory experience for Tom. He always wanted to touch things and liked to know how things tasted or smelt. Even railings, but that’s another story!
I didn’t know it then but letting go of expectations was to become my mantra.
Lesson 2: Live In The Moment
From an early age Tom was fascinated with water. As a toddler he loved to pour water into and out of small cups or jugs for hours on end.
The joy of watching him completely absorbed in his water play, his curiosity for the waters feel, look and movement taught me to live in the moment.
I realise now it was a sensory need for him. The visual stimulation from the patterns made when the water dripped and poured into various containers made him feel happy and calm.
Lesson 3: The World Is Loud And Bright
When Tom was a toddler, I often thought he had superhuman powers of hearing and seeing. He could hear a dog bark from miles away, get agitated during loud conversations and react immediately to bright lights.
Yet…he didn’t seem to hear me calling his name. These powers, far from helping him, seemed to cause him acute distress. He covered his ears and eyes with his hands, hid under tables and tried to run away. Anything to get from the noise and brightness. If he couldn’t get away, he would have a meltdown.
I was confused and worried by his reactions. I instinctively knew what would help him. He needed his favourite Tellytubby, a cuddle and a quiet place to make him feel safe.
Since having Tom I’ve realised how loud, bright and intense the world can be. I know now that he sees, feels and hears things that I’d never paid much attention to much more intensely. This sensory overload was the reason for his meltdowns. Heck, maybe that’s why he walked at such an early age …so he could escape!
I’m now more aware of the sights and sounds around us. I’ve even noticed that the intensity of fluorescent lights in offices and shops often affects me . During these moments of sensory overload I need to find a quiet place and take time to collect myself.
Lesson 4: Silence Can Speak Volumes
When I came home from hospital after giving birth to Toms sister I expected a grand home coming. I was looking forward to an excited toddler giggling and rushing towards me arms outstretched, impatient for a cuddle.
Instead I was greeted with a silent hug . A seemingly underwhelming welcome. I knew, however, from the way Tom hugged me, so tightly. The way he looked at me that he had missed me, that he loved me.
This was the start of my understanding that we didn’t need words to communicate. It was a good thing as he didn’t start to talk until he was nearly 5.
We’ve had a humongous amount of hugs since then!
Lesson 5: Never Take A Milestone For Granted
Tom was nonverbal until almost 5 years old.
When I was told by doctors that it was highly likely Tom may never speak. I was devastated. I could feel his frustration at not being able to tell us what he wanted. We had to find some way he could communicate with us.
Tom used to take me by the arm and pull me towards what ever he wanted. For example, the fridge if he wanted a drink or the front door if he wanted to go outside. We had to find a better way.
We started using objects and picture cards. These gave him a way of showing us what he needed or wanted. He’d give me the drink card if he wanted a drink or show me the coat card if he wanted to go outside. Guess which card was always top of the pile!? The biscuit card!
It’s not the milestone we were expecting but we didn’t take his progress for granted.
Lesson 6: Celebrate Every Unique Moment
The arrival of Tom’s sister Hannah marked the start of Tom’s shut down period.
Most of us sadly, are all too familiar with a lockdown but Tom was ahead of the curve! Back in 2002, he went into his own self-imposed lockdown. Showing zero curiosity about his new baby sister, Hannah, other children, or visitors. He screamed when she cried. There was only one thing he wanted to do all day, every day. Lie on the floor and move a piece of a toy wooden train track up and down in front of his face.
It was heart-breaking to watch. I felt intensely sad. Tom was missing out on all the fun toddler things I had planned to do with him. I was also fearful. Worried that Tom would forever resent his little sister.
One afternoon, without warning, Tom abandoned his beloved train track (seen in the photo at the edge of the rug). He spontaneously started to play with Hannah. Tears of joy streamed down my face. I knew that this was a unique moment to be celebrated.
From this small precious moment, the most incredible bond between the two of them has grown and developed over the years.
Lesson 7: Life Goes On
Receiving Tom’s diagnosis of autism just before he turned 4 came as a mixture of relief and sadness.
Relief as for almost 2 years I’d had a nagging feeling that something wasn’t quite right. Tom’s lack of speech, repetitive play and extreme reactions to any changes in his routine now made sense . However, I felt an equal measure of sadness. The future I imagined had been taken away. I felt isolated, overwhelmed, and missed having my family and friends on the doorstep.
But life goes on. I quickly became the CEO of Tom, Plc!
Soon after the diagnosis, we were offered a place on a home-based therapy programme – 40 hours a week of applied behavioural analysis therapy (ABA). A 2-year programme (the first of its kind in Switzerland) which took over my life. My weeks became a flurry of appointments, assessments, and the day-to-day management of the therapy sessions. Not to mention all the resources, the hundreds of picture cards I made to support the programme.
I hit the ground running! Working as a therapist on the ABA team gave me a sense of purpose. It also allowed me to adapt Tom’s programme so it reflected the things that mattered to him. More TBA than ABA!
Lesson 8: The Power Of A Hug
Three months into Tom’s ABA programme we flew to the UK to attend my mums 60th birthday party. A gathering of over 70 family and friends in a local pub.
It would have been easy to opt out of going. My mum knew how challenging it was for Tom to be out of routine. She would have understood if we had chosen to stay at home. But seeing family was important . My mum had survived breast cancer, so I really wanted to mark this landmark birthday with her.
The journey didn’t worry me as much as the party. We had made frequent visits to the UK since Tom was a baby. We often joked he had been on a plane more times than a train or bus. My travelling preparation was therefore honed to a tee particularly my ‘survival bag’. A handy assortment of books, toys and treats which went on all our travels. It could be deployed to help distract and calm Tom in situations he found stressful or overwhelming.
But, it was often a simple hug, which had the real power to calm, reassure and comfort him.
Lesson 9: The Importance of Perseverance
Tom made huge progress on his ABA programme. He started to speak and repeat phrases.
We were so excited to hear his voice. When he randomly said ‘Nanny’s greenhouse’ we flew back to the UK as soon as we could. Delighted that he could see Nanny and her greenhouse!
I’d have to wait a bit longer to hear him say ‘I love you mummy’. Tom had significant speech and language difficulties. He was unable to express his ideas and thoughts in complete sentences and had trouble pronouncing certain sounds. I admit I found the way he said ‘wamp’ for lamp charming. However, other people found it difficult to understand him.
He started regular speech and language therapy which included work on his ‘l’ sounds both in the therapy session and lots of practice at home.
With hard work and perseverance, he finally mastered that tricky ‘l’ sound.
Lesson 10: The World Is a Beautiful Place
Tom loves patterns. He is fascinated by lines, shapes and colours 〰🔴🔻🌈
When he was younger, he would often stop and stare at the shadows cast by railings. Fascinated by the shapes made by the lines. He’d be mesmerised looking at a crack in the pavement. Captivated by the glow of the setting sun and transfixed by a falling leaf, as shown in this photograph.
Tom taught me to take notice of all the little things that make our world so beautiful 🌍
Lesson 11: The Power of Sharing
Like every mum dropping their child off for their first day of school, I felt the usual mix of emotions . Proud yet worried about how Tom would settle in. Twelve months earlier it seemed inconceivable that we would find anywhere suitable for Tom. It had been quite a journey to get him to this point. Leaving him in the classroom was so emotional and overwhelming. I had to dash to the car for a cry.
I knew that it would not be possible for Tom to attend school fulltime. His communication difficulties, limited attention span and sensory issues. made full time attendance too challenging. I didn’t want to set him up for failure. For him to feel defeated by education at the very offset.
I wanted Tom to have the opportunity to learn alongside his peers. To have the shared cultural experience of education. I wanted a flexible option – sharing his education between home and school.
We discounted local primary and special schools because they were German speaking. Tom was just learning to communicate in English, so this was a no-no. The international school was our only option. Would they be prepared to share Tom’s education and allow him to have a mix of school and home-based learning?
We were lucky. They did.
Aged 4, and a year older than his peers, Tom started at the Zurich International Preschool for 2 morning per week with an assistant. His ‘at home’ time was spent following his ABA program and with me. It gave him time to sort out some of things he found confusing at school and space to recharge.
This collage of pictures taken during Tom’s Preschool year shows just how happy he was at school. Tom was able to enjoy a shared education for the next six years . We are forever grateful to the staff at ZIS for their patience, respect and commitment to Tom’s flexi-schooling.
Lesson 12: Making Sense of Senses
En route to Cornwall for a summer holiday, Tom broke his arm. He fell off a climbing frame at a service station.
We didn’t realise he’d broken his arm – he didn’t scream, shout or make any fuss. He simply picked himself up and headed back to the car. It was only when we were back on the road that I noticed him clutching his elbow. His face drawn, ashen and etched with pain. We veered of the motorway to find the nearest A& E. This photograph was taken as we waited to be seen at the hospital.
The X-rays showed that it was nasty break. I felt terrible. He must have been in the most horrendous pain and we had been unaware of his suffering.
It was just so confusing. Haircuts, having his toenails cut, washing his face caused him to scream to high heavens. Breaking his arm – not even a whimper.
We already knew that Tom had difficulties with his language and communication. This this couldn’t explain the lack of any emotion to his injury. Even without words, tears would have at least alerted us to his pain. I realised then that there must be major issues with how he was interpreting sensory information. This was having an impact on how he was behaving and responding. It just seemed so unfair for one little boy to have to deal with yet another set of difficulties. I felt defeated…
It was time for an occupational therapist to join team Tom!
Amongst other sensory issues, OT assessments showed that Tom was both overly and under sensitive to touch. His behaviour and certain reactions started to make sense.Tom had always disliked messy play but would be unaware of his hands and face being dirty. He loved being hugged by me but would recoil in horror if anyone else tried to touch him. He touched and mouthed objects but was fussy with his food and avoided certain textures.
So, aged 5, Tom started weekly sessions of OT at school and a programme of activities and exercises at home. With patience, commitment, and hard work, Tom has steadily improved his ability to interpret sensory information from his body and the environment. Haircuts and nail cutting are no longer an issue though he still has a relatively high pain threshold and tolerance for being cold.
This experience with Tom also taught me the importance of providing a nonverbal way to communicate aches, pain (including broken limbs!) and sensory overload to others in a simple and effective way. That’s why we’re proud to include a ‘I can do it manage me feelings ‘ kit in the TomTag range.
Lesson 13: Less Is More
As part of his occupational therapy programme Tom had a series of daily activities to practice at home. There were movement exercises to encourage the right and left side of his brain to talk better to each other. This interhemispheric integration would improve how he could react to his surroundings. There were also lots of fine motor activities. Tasks to help improve the small muscles in his hands and wrists to help him with skills like, grasping, dressing ( zips & shoelaces) writing and drawing.
I was willing to work and put in the time with Tom but sometimes he wasn’t interested in the activities. On days like these it was easy to feel disheartened and resentful.
Short of bribing him with his favourite biscuits (!) I learnt that the secret to getting him to do his OT exercises regularly was to do a little often. It also helped to spread them out during the day and turn them into a game. It was also important not to take things personally. If Tom was stressed or agitated during the activities then we would leave it and start again the next day.
Lesson 14: Joyful Collaboration
Tom’s ABA programme was a success. Now he could communicate what he wanted, concentrate much better and was behaving appropriately at school. But life isn’t just about getting your needs met and fitting in. It’s about connection and friendship. The joyful experience of sharing our ideas and feelings with another person.
How could we help Tom develop meaningful conversation, cooperation, flexible thinking and empathy. All the skills he needed to make and keep a friend?
I discovered Relationship Development Intervention (RDI) by chance in a magazine article. This programme based on Developmental Psychology was the perfect fit. It’s guiding principle is Joyful Collaboration. The idea that joy comes not from a toy or game but from sharing an experience.
Tom moved from ABA onto RDI at the same time as receiving OT and SLT (got to love an acronym or two!). It was a full-time job coordinating all these programmes and collaborating (joyfully!) with various professionals.
For RDI, we practised different activities at home working on joint attention, collaboration, teamwork, and communication.
In this short video clip, Tom (aged 8) and I are sharing the job of watering flowers. We take turns with the watering can with the aim of helping Tom practise being a ‘team member’. Although he was reluctant to water the flowers, he accepted my instructions . I loved how the ‘job’ developed into a fun chasing game. A true Joyful Collaboration!
Lesson 15: Planning Is Key
When Tom was 10 years old, we relocated back to the UK from Switzerland.
For any family moving home can be stressful, moving to a new country -double the stress! I was worried about how Tom would manage this major change in his life.
It was potentially a huge challenge for him. He craved familiarity, had built up excellent relationships with his various therapists and was thriving under his bespoke educational arrangement. How would he cope with a new home, attending school for a full day, wearing a school uniform for the first time?
The relocation went relatively smoothly because we planned and prepared for it. Creating a picture book of the new house and school was a great help .We focused on the positive aspects of the move such as being able to see more of his grandparents and cousins . We encouraged him to share any worries he had about the move. He worked on a story about his mixed feelings about leaving Switzerland with an amazing counsellor at the international school.
He settled in remarkably well at the local mainstream village primary school. There was some regression in his language and behaviour. But, with the support of a sensitive and dedicated teacher and assistant Tom soon found his feet and voice.
I quickly formed a new Team Tom with a new speech and language therapist and occupational therapist.
Planning was therefore the key to making the relocation a success.
Lesson 16: The Importance of Special Interests
It was one of my biggest worries when we relocated back to the UK from Switzerland. How would Tom manage without his special interest. -Swiss transport. He loved swiss trains . His favourite part of any journey was spotting lorries from the Swiss firm Galliker.
Fortunately, I had a secret weapon. Eddie Stobart – the iconic green delivery lorries that criss- cross the UK 24 hours a day.
I cunningly introduced Tom to Eddies and signed us up to the Eddie Stobart Spotters Club. We live near to the M62 – prime Eddie Stobart spotting territory! We could go out to eat as a local pub overlooked the motorway. The staff got to know us . They always gave us a window seat where Tom would quietly sit, happily keeping a tally of all the lorries he spotted on the nearby motorway (using his Eddie Stobart writing pad and pencil!)
Eddie Stobart lorries were a source of comfort and enjoyment for Tom. For us, they became a source of inspiration. Birthday cakes, biscuits, and presents also assumed Eddie status.
More importantly, Eddie Stobart became a means of encouraging him to engage in his learning. Art projects, tricky writing tasks and maths problem could all be given the Eddie treatment! Tom approached any task that had a hint of Eddie, with enthusiasm, happiness and a willingness to learn.
Tom’s love of Eddies lasted 3 years. The most memorable event was a tour of an Eddie Stobart depot and a chance to sit behind the wheel. I don’t know who was more excited – Tom or I!
Lesson 17: Fussy Eating Habits Can Change Over Time
When Tom was younger, he was a picky eater.
I knew that Tom needed a balanced diet – a variety of fresh, healthy food for good health and development. For the first few years, I felt guilty and responsible that he would only eat a limited amount of food.
Tom’s diagnosis of autism and the results of his OT assessment helped me understand his fussy eating habits.
He needed familiarity and routine. Trying new experiences including eating new foods were therefore difficult. It was obvious now why he was preoccupied with certain foods. They provided him with reassuring predictability.
Tom craved soft food like ice cream. He liked the feeling of coldness in his mouth. Bland foods like pasta, bread and chips were his preferred choice. He disliked meat because he found chewing difficult. Though he did make an exception for chicken nuggets! He disliked tomatoes but liked ketchup or tomato sauce because he didn’t like the texture of tomatoes . His favourite meal was pizza but without any topping other than tomato sauce.
Sharing regular meals and snacks and introducing new foods gradually helped Tom get comfortable with new foods. However, the biggest change came when he was 15. He started a Jamie Oliver cooking course at school. By preparing and cooking food with the encouragement from two talented teachers, Tom’s food preferences changed. He was more willing to try different foods.
This Christmas aged 20, Tom enthusiastically dipped carrot sticks and chunks of olive bread into his baked camembert. His food choices have come a long way since this photograph was taken!
Lesson 18: Detective Work
When Tom was younger it was difficult for me to know what his feelings meant. It was also difficult for him to pick up clues about how I was feeling.
Although Tom feels the same thing as everyone else, the nuances can be blurred. His feelings are much more intense and can be harder to distinguish. Feeling sadness could lead to him crying but also to laugh or shout for no good reason. He has difficulty interpreting gestures and expressions – often thinking I’m angry when I’m not!
With his SLT, we created a book of feelings to help Tom understand his own and other people’s feelings. We used this book to teach him the words he needed to express and recognise different feelings.
This work made me look at my own feelings and emotions. I had to understand what feelings mean to me before explaining them to Tom. We were both developing our feelings detective skills!
Helping him to identify the size of his feelings and relate this to his physical reaction was also important. Often, a little feeling could grow into a gigantic feeling. Tom could spend hours, days, even weeks catastrophising. Churning over thoughts and feelings in his mind like a sticky record.
Teaching and modelling simple self-help strategies like self-talk (phrases Tom could say to himself when he was feeling worried) helped. At secondary school he used a sensory levels chart (a visual chart to recognise his sensory stressors) to help him to manage his feelings.
Our experience led to the development of the TomTag Feelings Notebook. A resource for other families to use to support their feelings and emotions detective work.
That’s a thumbs up from Tom!
Lesson 19: Look At Ability Not Disability
Like any parent I was anxious about Tom’s move to secondary school. I had managed to keep him a year behind cohort, so he started at age 12 . However he was both academically and socially behind his peers and it felt like the gap between them was widening. Like a train picking up speed out of the station and you can’t get on it no matter how fast you run.
It was unrealistic to expect any exam success – unless there was an exam in Swiss train timetables and routes! Tom gets anxious even at the mention of the word test. Furthermore, his language difficulties meant that he struggled to understand complex sentences, instructions and specific vocabulary.
Despite the anxieties and challenges he faced, Tom always worked hard and tried his best . He was the only young person at his school to consistently achieve straight A grades for attitude across all subjects. This exemplary attitude to learning was motivated by his need to please his teachers and not disappoint or upset anyone. Though, he did enjoy many of his lessons. I felt so proud when he was regularly awarded prizes for effort at school prize giving.
Tom left school with few formal qualifications, but he left smiling, confident and with the motivation to continue learning. He even enjoyed Prom!
Lesson 20: Say What You Mean
One of the biggest challenges for Tom due to his language difficulties is making sense of what people are saying.
When Tom’s grandad suggesting taking him for a spin in the car Tom looked horrified!
Before I had Tom, I didn’t think about the extent to which we play games and hide behind words. How often we use sayings like ‘Pull your socks up’, ‘we’ve run out of milk ‘,’Get a move on’ . Many of which are confusing for Tom because he takes what is said literally.
When he was younger, I learnt to tell him exactly what I wanted him to do using as fewer words as possible. I helped him to learn how to look out for expressions on faces and realise the importance of how expressions are more important than the words themselves by emphasising my facial expressions and using exaggerated gestures . Some days I felt like a CBeebies presenter in full flow!
Tom can still become confused by words with similar or related meaning. Encouraging him to say when he hasn’t understood something and talking about some of the saying we use regularly and what they actually mean helps. His love of football is helping him experience playful teasing in a light heated way. Some good old footy banter with people he trusts. Thankfully his team are doing well so he can banter from a position of strength!
Lesson 21: It takes a village.
After 21 years living with autism, I have learnt that it really does take a village to raise a child.
My village is larger than most. My family, friends, the dedicated therapists, teachers, teaching assistants and personal trainer we’ve been privileged to work with over the years . Plus, the many people we’ve met who have shown us the character of their humanity. The hairdressers, barbers, dentists, shops assistants, waiters who when faced with difference have responded with patience, empathy and decency.
Every victory we experience with Tom whether it’s trying a new food, meeting new people or dealing with a change of plan belongs to us all.
Tom has taught me that it’s okay to ask for help. He’s taught me that just like any other child he needed me and our village to believe in him. His potential to learn, grow and thrive alongside his peers and community.
Thank you, Tom, for these lessons in what really matters. I know you will continue to face the next 21 years with courage, determination and the enduring support of your village.
I’d love to know in the comments below what lessons you have learnt from your children.
This year’s World Autism Awareness Week takes place against the backdrop of a global pandemic. With a third of the global population under lockdown our daily lives have been dramatically changed. Forced to remain in our houses and adapt to new circumstances, many of us will be feeling bewildered, frustrated and anxious.
Sweating it out!
The anxiety many of us are now experiencing around these unprecedented changes gives us an insight into how many young people with autism, like my son Tom, experience an unwanted change of plan – it’s fraught with worry, it’s out of anything we could have predicted and it’s not what we wanted.
Our ‘new normal’ in these strange and unsettling times is very much how he feels all the time. Imagine having to deal with that level of anxiety every single day!
So, given everyone’s heightened levels of anxiety how can you manage autism and anxiety in a lockdown?
We’d like to share some daily strategies which we are using to support Tom’s mental health during this lockdown period. We’ve called it the SWEAT approach – let’s sweat this one out!
Socialise – maintain social connections
Tom misses his dad, grandparents and college friends. Thankfully technology makes it relatively easy to keep connected. However, just as in normal social situations, we’re careful not to put demands on him to socialise virtually either. We offer him a choice of how he stays connected and how often he wants to have contact.
Work – provide structure and routine
Routines and rituals help establish stability and order for children and young people with autism like Tom.
Like many young people with autism Tom struggles with flexible thinking. That means he finds it difficult to adjust and readjust to changes in his routine and this can cause him anxiety. A useful strategy has been to highlight what has stayed the same and what has changed. This reassures him that even with all the uncertainty some things, like his college work, mealtimes and bedtime routines, remain the same.
Keeping familiar routines going as much as possible is therefore important to provide structure and reassurance. Tom accesses his college work and sessions with his speech therapist, English tutor and German teacher online. A simple written visual schedule shows him what to expect each day and can help navigate these confusing times. You can also create symbol-based home visual schedules quickly and easily with TomTag.
However, it’s important not to set the bar to high! Be mindful that there will be days when the ‘home-schooling’ isn’t done and instead it is just a day of being together. An example of this was during the recent warm weather when we abandoned the schedule and went for a family walk.
Emotions – share worries and concerns
Set aside time each day to talk about worries and concerns. Try to contain your own anxieties around the current situation because this anxiety gets transferred to our children. Now more than ever our autistic children need patience and support from the people they love.
Tom, like all of us, is naturally worried about events and this is amplified by worries about whether he is catching or spreading the disease.
We keep news coverage to a minimum and explain things in a clear and consistent manner using language appropriate to his level of understanding.
Making a wish list, where we write down all the things we want to do after the pandemic has passed, is also working well – though at the moment, it mostly revolves around football and Swiss trains!
Active – encourage physical activities
Keeping active is good for both our physical and mental well being. Tom has a daily fitness programme and he’s set up an exercise challenge with his speech therapist.
Focusing on activities and encouraging him to do some chores – like washing the car and helping his sister deliver essential shopping to his self-isolating grandparents and other vulnerable members of the community – provides positive reinforcement that is so vital to keep up his self-esteem, confidence and sense of purpose.
Time alone – relax with special interests
Build in lots of down time, together with time to indulge special interests. With all the family thrust together it’s important for mental well being that we all carve out some time for ourselves.
It’s a difficult time for all of us particularly for children with autism and anxiety. Hopefully by following these strategies we can sweat out this lockdown period.
What tips can you share that make this lockdown period more manageable and less stressful in your house?
Running from 3 – 9 February 2020, the theme this year is ‘Find your brave’.
Whilst autism itself it NOT a mental health condition, we do know that people with autism or a learning disability (or both) are more likely to experience mental health problems than the general population – and more likely to have it overlooked or ignored.
Helping your autistic child to ‘find their brave’ may take a little longer, need a bit more effort, patience and persuasion but with determination progress will be made and it can only have a positive affect on their mental health.
What does ‘finding your brave’ mean for a child with autism?
Bravery is different for every child and comes in all shapes and sizes. It’s not all about grand gestures, slaying dragons, high ropes or superheroes!
Being brave generally means facing something difficult or a situation you’re unsure, worried or scared about and going ahead anyway. If, like my son, your child has sensory processing issues, communication difficulties or an intolerance of uncertainty then simply managing and coping with daily life will mean calling upon their bravery resources pretty much every day.
Imagine all the things your child might be unsure or worried about. Is it going to school, visiting the hairdresser, sharing worries or asking for help?
It may also be something that appears small to us, such as trying a different food, taking a new route home from school or saying hello to grandma.
Over the next few days, we’ll share some ideas and techniques for supporting your child to find their brave. We’ll look at what it means to be brave, what holds us back and how to deal with those feelings that stop us. Finally we’ll talk about why it’s good to be brave and share some ideas for ways that TomTag can be used to help.
Let’s get started!
What is bravery?
Start by explaining to your child what bravery means and why being brave can make us feel good about ourselves.
Sometimes we need to be brave for big challenges but most of the time being brave means finding positive ways to deal with everyday difficulties and situations. It doesn’t mean that they have to deal with everything on their own. Let them know that it’s brave to ask for and accept help.
Bravery means something different for everyone. Remind your child that what’s brave for them might not feel brave for someone else.
Use examples from your own life to show times when you’ve had to be brave. It can help children to see that as adults we also have to face our fears in everyday life.
It’s often the simplest things that have the biggest impact.
A seemingly simple thing that gets forgotten, ignored or left unnoticed can cause a big problem down the line. Simple ideas, simple tools, simple changes might be all that’s needed to solve a problem or do a better job than a complex solution.
A Share how I feel tag, with its thermometer-style colour faces scale, has to be one of the simplest uses for the TomTag system but since introducing it less than nine months ago has become our best selling product. It can be used in lots of different ways which is perhaps one of the keys to it’s success – we’ve given some ideas in this free download guide.
Having recommended in our guide that using a feelings diary can help to identify patterns of emotions or behaviour and the triggers that could be causing them, we decided to make our own!
My TomTag Feelings Notebook
Keeping a diary gets you into the habit of noticing and naming how you feel in different situations throughout the day or at times when you feel most anxious or worried.
There’s a scale for rating the strength of your feelings and a guide to help build up a vocabulary to describe your different feelings and emotions.
By making notes about what happened during the day or at key points you can start to build up a picture over time which helps you to see patterns and identify the common triggers or stressors. Quite often these might be simple things that go unnoticed day to day but are easier to spot once patterns emerge.
It’s often the simplest things that have the biggest impact.
Christmas is a magical and exciting time but for many children with autism and other SEN, the festive period can be anything but wonderful.
Changes in routine, a house pulsating with flashing Christmas lights and a steady stream of visitors can be too overwhelming and lead to sensory overload, anxiety, distress and confusion.
Making adjustments that help your child cope better at this time of the year will hopefully allow them and all the family to have a more enjoyable and relaxing experience.
It’s also a good opportunity to work on important social skills that can be transferred to other situations at different times of the year as well.
Just another day
Keeping to the same familiar routines as much as possible, even on Christmas Day, can be key to helping things run more smoothly. There are no rules to say things have to be done a certain way so do whatever suits your family best.
It’s sometimes not possible to avoid some disturbance or change to the regular schedule at this time of year. Children who struggle with changes to routine can find this very unsettling. If they use a visual schedule at home or school, this is a great way to make sure they know about (and can prepare themselves for) anything different that’s going to happen.
If different or unusual foods are likely to be an issue, think about preparing and freezing your child’s favourite meal ahead of the big day so that it’s easy to serve alongside everyone else’s dinner and gives you one thing less to worry about.
Flashing lights, glittery objects and jingling bells all around the house are natural triggers for sensory overload. Let your child help to choose the decorations you buy and put up and consider decorating gradually over a few days so they are not overwhelmed immediately. Make sure to leave some areas of the house undecorated so there’s always somewhere for the child to retreat if needed.
Be aware of sensory triggers such as balloons, Christmas crackers, party poppers, festive music – consider using headphones or ear defenders at parties, carol concerts or similar events if sudden or loud noises are disturbing.
Use an “All about Christmas” symbol list or simple social story to support a conversation with your child to familiarise them with all the different things they can expect to find at Christmas time.
Christmas is usually a time of increased social contact and festive events with family and friends. Use a visual schedule to show what’s going to happen before any visitors come to the house or when you’re going to parties, visiting family and friends, church services, etc.
Maybe even keep a separate tag as a checklist to show all the family members they may be meeting and what an appropriate social contact might be for each group (eg. hugs are ok for family, hand shake for friends, etc.).
There’ll be lots of opportunities to teach social skills such as learning to greet visitors appropriately and saying please and thank you. Include relevant symbols in your visit schedule list or use another tag that you keep handy for a discreet reminder of social behaviour rules.
Many children with autism don’t particularly like surprises and aren’t good at faking delight if they get an unwanted gift. Some may prefer to have their presents left unwrapped or, if they do like the unwrapping part, they might want you to tell them what’s inside first.
They may also be overwhelmed by a large number of presents in one go. Try introducing them one at a time over the day (or several days) or adopt an advent calendar-style approach, bringing out a small gift each day in the run up to Christmas.
Don’t forget to put batteries in toys in advance so that they can be played with straight away!
Above all, remember that this is your Christmas as well. Get as much support from family and friends as possible and share out the workload wherever you can. Get children involved by giving them jobs to do which will keep them occupied and give them something to focus on.
We used the kit I know what to expect at Christmas & birthdays for the examples here. We know it can be a particularly taxing and stressful time of year for our loved ones with extra sensory and emotional needs, so there’s also an expanded version of the basic kit available which includes additional tags and blank buttons plus a Feelings & Emotions sticker pack. We call this our Christmas survival kit!
This guide is available as a free downloaded using the link below.
The TomTag feelings tag-o-meter is a visual feelings thermometer that can be used to support the development of all the skills required for good emotional intelligence.
It can help children to understand and communicate their feelings. By linking with a visual reminder of appropriate actions and strategies, they can learn how to manage those feelings too.
Regular use of this type of visual scale helps children to recognise the causes and triggers for their feelings and emotions. They can work out ways to help themselves improve their responses and handle things better in the future.
Let’s get started
At the start of the school day it’s helpful to know how a child is feeling to assess their readiness for learning today. Use the feelings thermometer as a way for them to quickly and easily communicate this to you.
You might find it useful to provide a list of further options (like the red tag shown here) to help you identify the cause of any problems. For example, are they sad because they are hungry or tired, too hot or too cold, are the surroundings too noisy or bright?
Once any issues have been dealt with appropriately the child will be more able to access and engage with their learning.
Are you expecting a change to routine, an unusual event or a visit to a new place today? Use the same approach to rate how comfortable the child is about this. If they are frightened, worried or anxious you can try explaining more about the reasons for the change or event or what they can expect to happen during the day or the visit.
Encourage the child to think about whether the strength of their feeling is in proportion to the situation. Does their reaction match the level of the problem? If not, discuss strategies they can use to deal with their feelings and talk about what a more appropriate response might be.
Get down to work
Before starting a task or activity, ask the child to rate their anxiety or confidence level about what they have to do. This information can help you to decide what support they might need to be able to complete the task successfully or it can open a discussion about whether their anxiety is proportional and realistic for the task faced. For example, are they:
How was that?
Revisiting the scale once a task, activity or event has finished offers an opportunity to reflect back and learn from it. Was their actual experience better or worse than they had expected it to be? How would they feel if they were now faced with the same event again?
If they were initially very anxious but with support were able to succeed, should this make them more confident about the next time they face the same task or a new one?
Another good time to check in with the feelings thermometer is after school, particularly as they may keep emotions locked up until they get home. Just as at the start of the school day, it’s a quick and easy way to communicate how they’re feeling and alerts you to any issues that have occurred during the day that might need further investigation or discussion before settling down to homework or evening activities.
What happened there?
Sensory overload, changes to routine, difficulties processing information, social interactions or being tired or hungry are all common triggers for anger or challenging behaviour.
Getting a child to think about and try to understand what made them angry or prompted their behaviour begins to develop their emotional self-management skills. Using a feelings diary can be a good way to identify patterns of behaviour and incident triggers and plan for minimising stress at key points.
Encourage the child to use a feelings scale to start recognising how they feel or what their impulses are when their anger level starts to build. Set up some different coloured tags for each level like the ones shown here. Use each list as a reminder of suitable calming ideas they can try to help prevent their progress up the anger/stress scale and bring their feelings under control.
This technique can also be used to identify and respond to inappropriate behaviour from over excitement or a high arousal state.
Children not only need to understand and interpret their own feelings, it’s important for them to be able to recognise the feelings of other people around them too.
When a child is familiar with using the feelings tag-o-meter to rate their own feelings and emotions, they can build their skills in appreciating other people’s feelings too.
As a parent, carer or teacher, you might want to let the child know that you are pleased with their work or attitude today. They may not have behaved well and you want them to understand that makes you sad. Reinforcing your words by showing them on the scale how you feel helps them develop their ability to recognise and interpret verbal and non-verbal emotional signals.
Let’s be friends
You can take a similar approach when dealing with social interactions between the child and their classmates, friends and family. If there’s been a disagreement or incident, try using the feelings scale to help those involved communicate with each other about what happened, how they are feeling and how they might be able to better control their actions in the future. Our School Timetable sticker pack (included in the kit “I know what to expect at school”) has a number of useful behaviour-related symbols that would help with identifying positive strategies in these situations.
The more practice a child has at acknowledging and recognising their feelings, using different coping techniques and appropriate communication strategies, the more relaxed and content they can be knowing that they have the skills to cope. A child who can identify his own emotions is more likely to be able to identify the emotions of others. Children who can see a situation from the view point of others are more able to engage in problem-solving and other social activities.
We all experience stress during our daily lives but for many autistic people the experience of stress can feel very intense and cause severe difficulties.
Like many young people with autism, my son has been experiencing anxiety related to an overly-literal understanding of what it means to follow school rules and when he is faced with an unplanned change both inside and outside the school setting. He has a very narrow view of what it means to be in the correct uniform or be on time for lessons or appointments. When he is feeling stressed he will rock on his feet, pace the floor and ask repetitive questions. In these situations, he finds it difficult to respond to any reassurance.
Together with his Speech and Language therapist (‘SLT’) and Occupational therapist (‘OT’) we have been using some strategies to help him. We have taught him that the concept of feeling overwhelmed means either too many feelings all at once or a very strong reaction to a situation. He can now use this word to express how he is feeling. He has been taught a format for identifying the worry and setting out actions to help resolve it. The actions relate to what he can think, say or do to make things better. We’ve taught him the phrase self talk and he is beginning to understand what a trusted adult would do or say to him in that situation to help and to use this as self talk. We are sharing this work with his teachers and support staff to ensure a consistent approach to talking about worries and solutions.
On the suggestion of my son’s OT we are trialling a tactical breathing programme developed for the military and emergency services to use in times of extreme stress. We wanted to have activities that were discreet and applicable to the classroom environment. Tactical breathing is a great strategy as no one needs to know that he’s doing it and he can use it to prepare for stressful situations as well as once he is feeling stressed. We’ve incorporated tactical breathing into an anxiety busting resource for him called the 3 O’s- Overwhelmed, OT, OK.
One of the resources we’re using is a simple free app called ’Tactical Breather’ which I’ve downloaded onto his phone so it’s readily to hand for stressful situations. I’m also encouraging him to use his phone to record worries and solutions so that these can be kept and built up to form a ‘library’ of helpful strategies for managing situations.
It is hoped that over time and with continued support in this area he will become more able to self soothe and manage his anxiety. Incidentally, studies have shown that stress levels of mothers of kids with autism are similar to that of combat soldiers. Perhaps I should download that app for myself too!