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21 Years Living With Autism – Lessons I Have Learnt

                                                                                                                                ‘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🌈

Clare ❤

Lesson 1: Let Go Of Expectations

Tom having fun with the gravel!

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 

Tom memorised in his water play

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

Tom having some quiet time with his favourite teddy

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

Reunited with Tom after retuning from hospital

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

Biscuit time- Tom’s favourite part of the day!

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

Tom playing with his sister Hannah

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

Some of the cards for Tom’s ABA programme

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

A reassuring hug during a busy family party

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 working on his ‘l’ sounds in his speech therapy session

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 in awe and wonder during a forest hike

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

 

Tom having fun at Pre-School

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

Tom in hospital waiting for an x-ray

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

Tom, happy and relaxed ready for his first day at school

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?  

Tom coped.

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.

Critically, we took his routines with us -his morning, bedtime, get-ready for school routines.  

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

All things Eddie Stobart!

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

Tom, aged 12 and his signature dish- cheese-less pizza!

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

Tom happy and relaxed in the mountains

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

Tom with his award for effort and all ready for Prom

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

Tom at home in the Etihad stadium

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.

Photo collage of memories

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.

                                                                                                                                          Clare ❤

Resources

 

  • cover image feelings notebook extra stickers

    Extra sticker sheets for Feelings Notebook

  • Feelings & Emotions Sticker Pack

  • Feelings Bundle

  • Feelings Tag-O-Meter

  • I Can Do It Manage My Feelings Kit

  • I Can Do It Share How I Feel Mini Kit

  • cover image product feelings notebook

    My TomTag Feelings Notebook

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Games for Children with Autism – 5 Fun TomTag Activities

Plastic tags showing examples of games for children with autism

Play is one of the main ways that children learn and develop. There’s no reason why children with autism who use visual supports are any different. So why not bring play and fun games for children with autism into your visual supports too. To them they’re playing games, but you know that they’re getting some occupational therapy, speech activities and thinking skills thrown in. Games may also help children with autism engage more readily with using their visual supports. It’s a win-win!!

Here’s some of our ideas you could use to help your child engage with TomTag. 

#1  Indoor I- Spy.

Colouful plastic tags showing examples of an indoor I-Spy gameStuck indoors? Why not encourage language and memory skills with a fun indoor I -Spy game.

Instructions:

🌈Ask you child to choose a colour tag and room in the house.

👀Can they look round that room and find, name or point to items that are the same colour?

✔Click a reward button into the tag for each item found.

😊Praise them for their effort and move onto another colour and room.

In the examples shown, we used stickers (rooms and stars) from our In the house sticker pack. We drew the other symbols onto blank stickers. 

#2 Outdoor I-Spy

Colourful plasticm tags showing examples for an outdoor I-Spy gameUse your daily walk to play  I- Spy and spot things you may see in your city, town or village using a personalised TomTag checklist.

TomTag is also super portable and robust – ideal for taking with you when you’re out and about!

Instructions:

🗨Ask your child to suggest things they are likely to see on their walk – perhaps they can guess what order they will spot them in!

✍Make up the checklist together – we’ve used stickers from our Out and About sticker pack but you can just as easily draw or write on some blank stickers.

👀 On your walk, encourage your child to spot the things, find it on their tag and turn the button over. This shows  they’ve seen that thing.

🧐Praise them for keeping their eyes open and being a good detective.  

#3 Feelings & Emotions Charades

Colourful plastic tags showing images of feelings and emotions Help your child understand, recognise and express their feelings and emotions with a simple game of charades.

No Oscar winning performances required!

Instructions:

💬Talk to your child about the feelings and emotions included in the game – choose ones that your child needs some help with.

🤏 Jumble up the feelings and emotions symbol buttons and ask your child to choose one for you.

😀Act out the feeling or emotion shown. Can they guess it? If so, pop it in the tag otherwise have another go.

🔁Swap places and ask your child to act out the feeling or emotion for you to guess.

We’ve used symbol stickers from our Feelings and Emotions sticker pack but you can easily draw or write on blank stickers.

#4 Categories and Pairs

Colourful ploastic tags showing examples ot items that belong togetherDevelop vocabulary with a game of categories or matching pairs

Instructions:

▶Categories

🤏Choose a category. For example, things to wear.

🧦Ask your child to find all the symbol buttons showing things that can be worn and click them into the tag.

🚿Repeat with a different category, e.g. things I need to do in a morning.

▶Pairs

🧼💧Ask your child to find the items that go together e.g. what do I need to clean my teeth or wash my hands?

We’ve used symbol stickers from our self-care sticker pack, but you can easily draw or write on blank stickers.

#5 Sequencing skills

Colourful plastic tags showing daily activity sequencesPractice sequencing skills with a simple game of “what happens next”.

This game can also help reinforce familiar daily routines so it’s a win-win for everyone!

Here’s how to play the TomTag way.

🤏Choose an activity sequence

🤔Jumble up the symbol buttons and ask your child to find the one they think they should come first, second etc.

✔Click them into the tag into that order and ask them to check it is correct.

🗣Call out an activity and ask them to find it in the tag and turn the button over to show they have completed the activity.

Depending on your child’s ability, you could take out a few of the steps and build up to the longer 6-step sequence. We’ve used symbol stickers from our two popular mini-kits: teeth brushing and morning and evening routine.      

                                                                                                                              

Do you have any tips for games you can play with your TomTag? Please let us know in the comments below.

Useful resources

  • Out & About Sticker Pack

  • Feelings & Emotions Sticker Pack

  • Self Care Sticker Pack

  • Blank Stickers -Sticker Pack

  • Blank buttons – pack of 40

 

 

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Autism and anxiety in lockdown – sweating it out!

Exercise routine

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!

tips for good mental health
Daily SWEAT

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

written timetable
Tom’s written weekly timetable

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

talking at table
Discussing 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.

using exercise bike
Tom training hard!

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

reading book
Spending time alone

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?

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Home visual schedules for children with autism -TomTag tips

At the present time, we’re all facing unprecedented uncertainty. Now that schools are closed and we are stuck at home, families like ours are under a lot of stress. For children with autism, like Tom, this is a highly confusing and anxious time. Using a visual schedule at home will help to build a sense of consistency, predictability and security for him. In this blog we discuss the reasons why home visual schedules can help children with autism and how you can get started with using them.

Why should you use visual schedules at home?

Visual schedules at home can help you to communicate to your child when activities or events will happen throughout their day.

They use a sequence of drawings, symbols, text or pictures to show what a child is expected to do.

The more children can anticipate what is happening, the safer and more secure they will feel in these rapidly changing times.

Tips for creating home visual schedules

Here are some of our tips which we have taken from our Show me guide – visual timetables, Schedules and Routines.

We call it the TomTag 4 P’s approach!

Plan

Notebook and pencil for planning schedules
Planning is key

Depending on your child’s developmental age, sit down each evening and try and plan out a rough schedule for the next day. Decide which activities for the day or part of the day you want to show. Choose the length of the schedule that you think will be appropriate for your child and adjust as necessary.

A simple daily visual schedule could include some education, fun activities and chill time (for them and you!) to help give some meaning and purpose to the day. If you’re interested in creating or using educational resources have a look at Twinkl and Education.com.

Try to replicate some elements of your child’s typical day. For example, encourage them to get dressed, brush their teeth, eat breakfast, etc. You could use a mini schedule to target these specific skills by breaking down a single activity into smaller steps.

Symbols showing a bedtime routine
Example of an evening routine using Widgit symbols

Make sure the schedule includes things like bedtime, time for exercise and meals. You could also consider giving children a chore or job to do to help them feel useful. This could be as simple as clearing the table or putting away their clothes.

Setting aside time every day to do a family activity that you know helps everyone in times of stress is also important. This could be watching a movie or playing a game.

Worried about challenging behaviour?

Try starting with activities that your child usually does willingly. It makes sense to structure the day so that harder tasks are done first when children are likely to be more rested. After schoolwork or chores are complete you can follow with easier tasks as a reward for accomplishing the harder tasks.

Prepare

Boy playing with lego as shown on his visual schedule

A home visual timetable or schedule doesn’t have to be complicated– a simple written, maybe colour-coded, chart pinned on the wall so your children can see it and refer to it will do the trick. 

There’s lots of examples of visual schedules and timetables online to copy or download. For a quick and easy way to create home visual schedules our TomTag Primary Home toolkit or Early Years Home toolkit are great options.

Prompt

Most children will be used to seeing a visual timetable and prompts at school to show them what to expect during the day. Introduce a visual schedule at home using the following steps:

  • Cue your child with a brief verbal instruction when its time for an activity to begin e.g. “check your schedule”
  • Gently guide them to look at it or place it in their hands and prompt them to look at the next activity picture
  • Using the least amount of words, describe the activity e.g. get dressed
  • Help them do the activity or model how to do it.
  • Praise them for completing the activity
  • Cue them to check their schedule again so they can move smoothly onto the next activity.
  • Fade the prompts one your child learns how to follow the schedule

Patience

Keep prompting, praising and be patient!

It may take some time but it’s also important to acknowledge the pressure we’re all under. If the schedule goes pear-shaped, take a break and try again another time.

 

Helpful resources

Widgit Online offers a free 21 day trial that would be perfect for creating your own visual schedules for kids to use at home.

Five Minute Mum is a great blog offering lots of ideas for keeping children occupied during the day.

Recommended TomTag products

  • Early Years Home Toolkit

  • Early Years Sticker Pack

  • I Can Do It Learn At Home Kit

  • I Know What To Expect – Morning and Evening Mini Kit

  • I Know What To Expect At Home Kit

  • I Know What To Expect Early Years Kit

  • Learn At Home Sticker Pack

  • Primary Years Home Toolkit

Maybe you have a tip on how best to use visual schedules at home? Please get in touch or leave a comment below.

 

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Your TomTag guide to an autism-tastic Christmas

green square background with text "Your TomTag guide to an autism-tastic Christmas

Christmas. Love it or hate it, it’s coming our way again – sooner than you think!

Because we know that this can be such a difficult, fraught and stressful time of year for families like ours, we’re sharing our best Tom Tag tips for an autism-tastic Christmas. 

Follow these tips of planning, preparation and patience to get ready for an autism-friendly Christmas that’s just right for you and your family.

PART 1: Planning

#1: Project Christmas: Decide what’s the best way to ‘do’ Christmas for YOU and YOUR family

We love this idea from the Gina Davies Autism Centre. Grab a cuppa, a notebook and pen and start planning. Think about the whole upcoming Christmas period, not just the day itself. Reflecting on what was stressful last Christmas is a good starting point.

  • ✍Make a list with four columns headed up Achievable, Desirable, High Risk, Impossible!
  • 🤔Think about what is planned or expected over Christmas and place each activity under one of the four columns.
  • 🗞Keep your plan to hand and add to it as necessary.
  • 👏Don’t aim for 100% – if you can manage most of the achievable, one or two things in the desirable column and manage to come through everything in the risky column be proud of yourself – you’ve helped your family enjoy the bits of Christmas that work for them.

#2: Make a personalised ‘All about Christmas’ visual guide to show all the different things you might find or do at this time of year.

For example, a photo collage or Christmas scrapbook showing Christmas objects, Christmas food and activities that only happen at Christmas e.g. meeting Father Christmas or pulling Christmas crackers. You could also include pictures of your family celebrating Christmas.

Children with autism tend to forget social information so a permanent visual guide is a great way to remind them what Christmas looks like.

#3: Talk to your child’s school or support team so you know what different things they might be doing and when.

Ask them if they have a copy of this excellent autism advent calendar for schools from the National Autistic Society. If not, print a copy off for them to use to help your child manage during the Christmas period at school.

Have a meeting with your child’s teacher to plan together how you can help your child cope with the activities coming up. Keep communication going throughout the Christmas period with a ‘Home- School’ book such as the lovely one available from That Beautiful Mind.

#4: Take time to sit down with your child and talk through anything they might be finding confusing or unsettling about Christmastime and all its festivities.
It’s often the little things we don’t even notice that can seem so huge to them.

Look back at your Christmas plan (see Planning tip #2) and for each planned activity or event, make a two-column list headed ‘Concerns and Solutions’. Ask your child what concerns they may have and then together think about and write down a solution.

For example…

  • 🏘 a visit to family or friends
  • 😟 worry about what they will drink
  • 👍agree to take their favourite drink or ask the hosts whether they have it.

This think-say-do approach is a great way for dealing with uncertainties that occur throughout the year not just at Christmastime.

#5: Make realistic plans for your shopping needs.

Choose quieter times of day, take a list, use a babysitter, bring snacks, shop online.

Christmas shopping with a child who has autism is definitely a high-risk activity! Sounds, lights and the hustle and bustle of crowds – it’s easy to see why meltdowns occur and shopping trips are abandoned. There’s no need to be superhuman. Keep it simple, practical and do-able!

#6: Talk about social rules and different expectations that people might have around Christmastime.

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 going to parties, visiting family and friends. Roleplay and practise greeting visitors appropriately and saying please and thank you.

#7: If your child has little or no interest in typical toys, make a list of alternative gift ideas that you can suggest to relatives and friends when they ask what presents they can buy.

Sensory Direct have a wide range of sensory toys and equipment for autistic children. You could also suggest something small and inexpensive and ask that any money left over is put towards an activity that your child enjoys or time with a favourite babysitter.

#8: Make sure visual schedules are updated to show any changes to routine or special festive events.

Using a visual schedule, like TomTag, at home or school is a great way to make sure that children with autism (like ours) know about and can prepare themselves for anything different that’s going to happen.

In our experience, front-loading any changes to routine early on means that they can be coped with. Later changes to routine (however small) can cause distress and anxiety. Check out our I know what to expect at Christmas and birthdays kit for ideas.

#9: Let your children help to choose and put up the decorations in and around your home.

Christmas decorations can be disruptive to children with autism. Consider decorating gradually over a few days so they are not overwhelmed immediately. If inside decorations are too much then decorate outside the house only.

Twinkly, shiny, glittery Christmas lights whilst enjoyable to look at can lead to sensory overload. Consider limiting the number on display and choose lights that have different settings you can control.

PART 2: Preparation

#1: Keep sensory armour to hand for trips to the shop, parties and other festive events where sensory experiences can easily become overloads

Sensory armour could include:

  • 🎧 headphones to cut out some of the noise and sound
  • 🧢 a cap to help shut out some of the flashing lights or people
  • 🕶 dark glasses to reduce the light intensity
  • 🧸 a favourite comforter for reassurance
  • 🍪 small portions of snacks to help when things get tricky

#2: 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

A personalised visual checklist is a great way to show your child who all the family members are that they may be meeting and what an appropriate social contact might be for each group. You can find appropriate symbols in our Christmas & Birthdays sticker pack (links below).

#3: Leave some areas of the house undecorated so there’s always a quiet place for your child to retreat to if they need it

Flashing lights, glittery objects and jingling bells all around the house are natural triggers for sensory overload. Having a Christmas – free zone to escape to can help bring stress levels caused by sensory overload down to more manageable levels.

#4: Discuss the escape plans that it’s ok for your child to use if everything gets too much for them

Having a calm and quiet place to escape the noise and bustle of Christmas is crucial. Agree with your child how they will let you know that they need to use it. For us, Tom showing me a simple red card when he’d had enough worked well.

#5: Think and talk about the extra social demands that might trigger anxieties or sensory problems

Spending time with family and friends, the expectation to be ‘happy’ and join in can be stressful for all of us – particularly for children with autism.

Use a visual schedule to explain what is going to happen and try to avoid social visits on consecutive days to allow for some downtime.

#6: Advent calendars are a great way to prepare for and understand the count down to Christmas

We love this idea from The Autism Page for a Christmas Book Advent Calendar. It combines the excitement of unwrapping a new Christmas book each day with the benefit of using the books to build up an understanding of Christmas.

#7: Be prepared that your child might not be able to sit at the table for as long as you would like (or maybe not at all). Warn your host if you are not having Christmas dinner at home.

It can be stressful to have your child’s behaviour ‘on display’ to family and friends at shared meals. Be practical, realistic and upfront about it. If your child only sits at the table for say three minutes usually then Christmas day is unlikely to be any different. Take turns to supervise them or provide them with something to keep them occupied.

Keep working on mealtime skills at home and maybe next year will be different!

#8: For children who won’t eat a traditional Christmas dinner or the main meal you’re serving, prepare and freeze their meals in advance to reduce workload on the day

Just don’t forget to get them back out of the freezer in time! 

#9: Consider your child’s sensory needs when wrapping up presents. There’s lots of great alternatives to traditional Christmas paper such as foil or fabric.

The choice of alternatives will depend on whether the sensory issues relate to over or under sensitivities. Aluminium kitchen foil is brilliant for quickly wrapping all sorts of odd shapes and sizes as well as being shiny and noisy if your child likes that kind of sensory input. For something more gentle, calming and simple to open, try fabric tied with a ribbon where just a quick pull will reveal the gift. The bonus is that these options are eco-friendly too.

#10: If toys need assembling or batteries putting in before they can be used, do this before wrapping them up so that they can be played with straight away on Christmas day

It’s always worth checking inside boxes and packaging even if you’re not expecting there to be any assembly required as those pesky ties and tape seem to get everywhere!

PART 3: Patience

#1 In the build up to Christmas, remember to exercise some self care so that you can manage your energy levels and remain focused on what you and your child can realistically achieve

Play some relaxing music, burn some scented candles, take a relaxing hot bath to relax. Practise breathing!

#2 Take the time to read social stories with your child about what to expect at Christmas, including meeting with Santa.

Social stories are particularly helpful for activities that only happen at Christmas. You can make your own or check out the FREE printable Christmas social story about meeting Santa on the wonderful parenting blog And Next Comes L – Hyperlexia & Autism Resources

#3 Christmas is a time when sensory issues are greater than ever. To help prevent sensory sensitivities becoming overloads, allow your child to have some control over these experiences.

Where possible let your child have direct control of their sensory experience. For example, hand them control of buttons for the lights (if appropriate) or provide sensory defences like ear defenders or sunglasses.

#4 Many children with autism 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. If your child finds wrapping paper highly confusing, e.g. thinks that pictures on the paper show what’s inside, then using plain wrapping paper with a clear picture of the contents stuck on the outside will help.

#5 If your child has dietary restrictions, don’t despair. Accept where your chid is now with their food and be patient.

Preferences change so it might not be the same next year!

If you are eating with other people at their house and your child won’t eat any of the food or insists on a particular plate, cup, spoon etc. provide these things so your child can join the party briefly and tell the hosts in advance.

#6 Get some Christmas helpers! Be patient with yourself and ask for help with preparations from family and friends.

Encouraging the whole family to get involved makes everyone feel included and part of the Christmas build-up. Don’t feel like you have to power through on your own.

#7 Buy or make your child’s Christmas costume or party outfit early and let them wear it around the house for short periods of time to help them become comfortable with how it feels.

Costumes and new clothes can be challenging for children with sensory sensitivities. Encouraging them to wear these around the house helps them become more tolerant of the different fabrics against their skin.

#8 Playfully and patiently practise Christmas traditions such as receiving and unwrapping presents and pulling crackers so that your child knows what to expect and can join in.

Play wrapping games by wrapping up items so your child gets used to opening the paper and finding something inside. Buy some cheap crackers and show your child how to pull them and shout ‘bang’ so the noise doesn’t come as a surprise. Practise wearing hats and reading jokes.

#9 Some children may be overwhelmed by a large number of presents all at once.

It’s natural to want to spoil them but be patient and 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.

#10 Have the Christmas that suits your family as it is now. Forget about the perfect day, embrace the imperfections and enjoy your special moments

Remember that this is your Christmas too. Try and relax and enjoy the bits that work well. Recognise that some things are too hard at the moment but with patience and practise they may well be achievable next year.

Merry Christmas from your TomTag team!

Useful resources:

  • Christmas & Birthdays Sticker Pack

  • Christmas Survival Guide

  • I Know What To Expect At Christmas & Birthdays Kit

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Coping with a family Christmas for an anxious teen with autism


For my son, Tom, thinking about our family Christmas meal is causing him anxiety. Spending time together and creating memories over a shared meal – it’s what many people love about Christmas – but it’s not so easy for an anxious teen with autism. Continue reading Coping with a family Christmas for an anxious teen with autism

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TomTag: your stories – Elizabeth

We learn a great deal from listening to our customers about their experiences with TomTag. It’s always interesting to find out about the different ways they use our products and wonderful to hear how it often makes such a real difference to their lives.

We thought it might be helpful to share some of those experiences and ideas with you too so we’ve interviewed a number of our customers who have been kind enough to talk about their different stories and backgrounds with us.

First up is Elizabeth, a childminder from London, and mum to two girls aged 4 and 12. 

Why did you purchase TomTag?

I bought TomTag to use with my daughters as both girls are on the autistic spectrum. Although they are both verbal and relatively high functioning they still need some support with their daily life activities.

I’d describe my youngest daughter as being in a permanent ‘fight or flight’ mode, always needing reassurance about what to expect during the day. The eldest has executive functioning issues and needs support to help her sequence activities and with organisation.

Did you use any other type of visual supports before you tried TomTag?

I used to make my own picture timetables and sequences. It was very time consuming having to print off the pictures, laminate them and then attach them to Velcro. My youngest daughter really didn’t like the Velcro system so when I saw TomTag advertised in Aukids magazine I decided to give them a try.

So, how do you use it?

In lots of different ways! 

For my younger daughter I have set up:

 

 

  • daily timetables that I create by prominently displaying 3 tags on hooks on the fridge (and also in the other rooms where she needs to use them) to show her what her morning, afternoon and evening routines should be
  • a toilet routine reminder hanging in the bathroom which is a simple picture sequence checklist to break the routine down into small steps.
  • social story resources to help prepare for things like visits to the doctor and hairdresser. I explain what’s going to happen and the order of events whilst we look at the pictures together.

My elder daughter uses TomTag for: 

Younger child tag examples

How has TomTag helped your children?

My little one finds TomTag very comforting. She feels in control of her day now and is less anxious about what is going to happen next. Seeing her routine in pictures also helps with teaching her sequences and time concepts. She loves the ‘hands on’ system – she particularly enjoys clicking the buttons in and out!

My older daughter finds TomTag really helps with her organisational skills. She feels less anxious at school knowing she has all the right things with her. She also likes the ’hands on’ nature of TomTag and she’s now started taking responsibility for planning and organising her day. For example, when she started going to choir as an after school activity, she changed her tag by herself to show this change of routine.

I’ve also found the tips and advice for teaching life skills on your website very helpful.

Do you have any suggestions for how we could make TomTag even better?

The range of images supplied in the various sticker packs is generally good. I have used the blank stickers to draw some personalised images – an umbrella, keys and phone charger.

I think there could be some additional ‘days out’ type images e.g. summer fair, fun fair, adventure park or castle. Perhaps a jumbo version of the tags and buttons would be useful for children who have sight problems but I appreciate the product would not then be as portable!

Overall I think TomTag is a wonderful product and it has really made life easier for both my daughters.

Thank you Elizabeth for sharing your story and for giving us some insightful tips on how TomTag works in your home.

Follow the highlighted links in the interview to find out more details about all the products used by Elizabeth and her family.

Would you like to share your story with us?

All it takes is a short chat with us on the ‘phone, ideally send us a few pics of your TomTags in use then just leave the rest to us. It’s easy to get in touch with us, all the details are on our Contact Us page. 

 

 

 

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Interest or obsession – a matter of perspective

The recent 175th anniversary of the issue of the Penny Black postage stamp took me back to my childhood and the joys of stamp collecting. For me this was a hobby, a pleasant way to pass the time and a special interest I could share with my dad.

Interest or obsession?

eddies
Eddie Stobart collection

Most people have interests and hobbies. For children with autism however the term ‘special interest’ implies more than a run of the mill hobby – usually that they have an obsession with a particular object, topic or collection.

Having interests is generally a good thing for most people but when they become obsessions then they can interfere with quality of life.

Managing special interests

Over the course of his childhood my son Tom, who is autistic, has had a range of special interests, including:

RUBY GLOOM 6 023
Train spotting!

  • Thomas the Tank Engine
  • Traffic lights
  • Eddie Stobart lorries
  • TinTin
  • Number cards
  • Flags
  • Trains

As a family we’ve always engaged with Tom’s various interests and tried to view them as his way of expressing himself. We’ve used them as a stepping stone to expand activities, encourage his learning and promote his communication skills.

However, as many parents know from experience, managing special interests before they morph into all-consuming obsessions is one of the many balancing acts of parenting a child on the spectrum.

Obsessions – good or bad?

Unlike my interest in stamp collecting, Tom’s special interests fulfill a number of specific needs for him. His current interest is trains and the positive effects of this include:

  • Gives him enjoyment and makes him feel happy.
  • Acts as a comforter and a coping mechanism. When he is overwhelmed or anxious he likes to immerse himself in thoughts about trains.
  • Allows him to connect with other people in social situations as he uses his interest in trains to start conversations.

It is when Tom is anxious that we see the difficulties that his special interests can cause:

  • It’s difficult to communicate with him as all he wants to talk about is trains.
  • Undermines his ability to learn at school as all his thinking time is taken up with thoughts about trains.
  • Isolates him from peers who do not want to talk about or listen to a monologue about trains.
  • Can affect family relationships as he only wants to participate in activities which revolve around his special interest.

Tips for managing special interests

It’s not generally realistic (or necessarily desirable) to remove the special interest. The best approach is to try to manage the special interest so that it does not take over everyday life.

These are some of the strategies we’ve tried to follow:

Set limits

clockTom can talk about or view videos and pictures of trains on the computer at certain times of the day e.g. when he gets home from school but only after finishing his homework or between certain hours at the weekend.

Make it predictable

Making sure that Tom can clearly access what he needs during these limited times or preparing him well in advance if it’s not going to be possible help to significantly reduce anxiety levels (his and mine!).

Encourage communication

notebook & pencilReduce the dependence on the special interest as a comfort when there are worries or anxieties by encouraging other means of communication. We set up a feelings book so that Tom can record any worries he has and we have a designated adult at school that he knows he can talk to about any issues that arise during the school day.

{Using this idea with Tom sparked the design of our TomTag Feelings Notebook which has now been added to our range of products – see links below}

Teach conversation skills

With the help of Tom’s speech and language therapist, we’re working on developing conversation skills to support his understanding of topic management and how to read the signs that people have become bored or disinterested in his train talk!

If you’d like more information or advice about this topic, Ambitious about Autism have an informative article on managing obsessions and the National Autistic society also has some practical advice on understanding behaviour and obsessions.

In the meantime, I would love to hear your experiences of managing special interests and any tips you could share.

  • cover image feelings notebook extra stickers

    Extra sticker sheets for Feelings Notebook

  • Feelings & Emotions Sticker Pack

  • Feelings Bundle

  • Feelings Tag-O-Meter

  • I Can Do It Manage My Feelings Kit

  • I Can Do It Share How I Feel Mini Kit

  • cover image product feelings notebook

    My TomTag Feelings Notebook

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Choosing the right school for your child with autism

How do you choose the right school for your child? Not only do you want to find the school that will give them the best possible education but somewhere that they will be happy, make friends and discover new interests.Cheerful school boy

This is a difficult and challenging process for most parents but if your child has autism, making the right decision becomes even more important.

Do your research

Get as much advice as you can

Talk to family, friends, other parents and professionals who have knowledge of provision in your authority
e.g. Educational Psychologist, Parent Partnership or Parent Support group

Look at the school website and brochure

This should give you a general view of school policies & structure.
Under the new SEN Code all schools must now have details on their websites about their policy for children with SEN too.

Arrange a private visit to the school

Open days are useful but to get a real feel of a school arrange a private visit during school hours and preferably over a break or lunch time.
This gives you the chance to observe how pupils behave and interact with staff and their peers. You can also get a feel for the more practical issues – how busy are the corridors, how noisy is the school canteen, etc.

Boy and teacher

Important questions to ask when visiting schools

As well as general questions on issues such as uniform, opening hours and holiday dates, you will undoubtedly want to ask questions on autism specific issues.

Here are some ideas for important questions you might want to know the answers to.

Staff knowledge and training

What experience and knowledge do the staff have of autism? Have they had any specific training?

Are all staff aware of the associated difficulties of being autistic e.g. sensory issues, dietary needs?

Do teachers use autism-friendly communication strategies e.g. visual cues, key words, clear and unambiguous classroom language?

Individualised plans

Would the school be able to offer a tailored curriculum to take into account your child’s needs?

What resources does the school have to accommodate your child’s special interests?

Is one-to-one support available – how much and how often?

Is homework differentiated where appropriate and clarified for a child with autism?

Are there opportunities to learn life skills such as cooking and self care skills?

Pastoral care

How is bullying dealt with and what steps have the school taken to understand the particular vulnerability of children with autism?

What is the system for home-school communication? In my experience, good communication between staff and parents is the key to a successful school placement!

Is there a designated quiet area or room available that children can go to when necessary?

Are there any break time or lunch clubs where your child could go for support or that would match their interests?

Does the school have any system of peer support in place e.g. circle of friends or buddy schemes?

Useful links

The Autism Education Trust have just published a really useful guide that will help you in your search to find a new school, whether it be primary, secondary, mainstream or special school. There’s even plenty of room to make notes so why not print off a few copies to take with you on your school visits.

A parents and carers’ guide to finding a school for your child with autism

 

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