Triad of Impairments Part Three - Restricted and Repetitive Behaviours, Activities and Interests.

Earlier this year, I was asked to present at a professional development session for early childhood educators. The presentation? All about Autism and Sensory Processing Difficulties.

The presentation was received so well that I thought that I would use part of my presentation on my blog as I'm often asked questions about Autism and O and L. So here goes!! 

This is Part Three in which I'll focus on Restricted and Repetitive Behaviours, Activities and Interests.

You can access Part One - Communication Impairment here and Part Two - Impairment in Social Interaction here!

Individuals diagnosed with Autism have difficulties in three main areas. These areas are known as the Triad of Impairments.

1. Communication Impairment

2. Impairment in Social Interaction

3. Restricted and Repetitive Behaviours, activities and interests.

Before I begin to discuss the third area, Restricted and Repetitive Behaviours, Activities and Interests, please keep in mind that many of these traits are present in typically developing children. The difference in those diagnosed with ASD is the intensity in which these traits present. In a child with ASD, the traits are much, much more intense and they are ongoing. I’m going to refer to children with Autism but all of these traits may be present in Autistic adults as well.

Individuals diagnosed with Autism often have a restricted and repetitive range of behaviours. Again this can be present in typically developing children, the difference is the intensity.

Children may play with objects in an unusual way. Children may show repetitive interest in spinning the wheels of a toy car, rather than playing with it in an imaginative way or pushing it along the ground. They may line objects up or arrange objects in groups – L likes to line objects up, O likes to group objects which makes life very interesting and very loud at times when they’re lining and grouping the same set of objects.

Children diagnosed with Autism may not play “pretend” games, they may not imitate others or use toys in creative ways, however, be mindful as these traits can also be seen in children without Autism. They may prefer to stack objects rather than play with them in a more traditional way. They may prefer to play with toys that are not necessarily age appropriate.

They may only play with a few toys – for example, L’s interest has always been all things superheroes. Almost any game that he plays will always be with his superhero figurines, toys and cars. And if he starts off playing a game that doesn’t involve superheroes L will invariably be turned into a superhero game. Individuals may have a restricted interest in a very narrow topic area - O’s interest is all things space – she can tell me anything and everything about moons, planets, stars, asteroids and so on, yet will struggle to tell me about her day at school.

Children diagnosed with Autism may repeat the same actions or movements over and over again, such as flapping hands, rocking, twirling, they may wriggle their fingers, stroke their hair over and over, walk on tippy toes, bounce on the spot, spin on the spot and so on. This is known as stimming and it is a self-regulatory behaviour. Stimming is how individuals manage their own emotions and quite often an individual will present with different stims for different emotions.

Children diagnosed with Autism may have repetitive speech patterns or echolalia. Individuals may say particular phrases or words that they’ve heard over and over. When answering a question they may repeat the question back to you before answering the question. They may be able to echo back to you or mimic words that you ask them to say. Below is a clip of L and his echolalia.

L was non-verbal up until the age of three. At the age of three when he was diagnosed with ASD he voluntarily could speak a grand total of 20 words however if you asked him to say a word like “dog,” he could usually repeat it back, however, these words were never used in his day to day vocabulary. Even now he will revert to using echolalia when stressed. 

Keep in mind that echolalia is developmentally appropriate for young children – think of babies babbling. Babies will babble mimicking their parent's tone of voice and sounds that they hear. This is echolalia. When a child echoes back to you what you’ve just said, they are recalling a memory in their brain on how to reply to you. Echolalia gives a child time to process what you have asked of them. 

A child with Autism may also use Scripted Speech – they may recite lines from movies or television shows word for word and they’ll often recite particular phrases at particular times. Scripted Speech is often associated with emotions – if they’ve heard something when they are sad, they may repeat the phrase each time that they are sad.

Many prefer routine and will do the same thing the same way each and every time. They may have difficulty in flexibility with these routines. Children with Autism have a strong preference for routine and predictability. They may resist an activity that they are not familiar with. Many children with ASD thrive in environments that have routine, schedules and structure as they are predictable. If their world operates the same way every day, they feel safe.

Individuals may display unusual distress or unusual reactions to everyday sights, sounds and movements - which is Sensory Processing Difficulties!

Sensory Souls Event - Paddle Boarding

Wednesday's at Superhero Headquarters is therapy day for both O and L. Therapy usually involves a one on one session with either an Occupational Therapist or a Speech Therapist for both O and L either at Autism Queensland or at school. However because it is school holidays, we put therapy on hold for the two weeks to give my little superheroes a break and instead we've been doing therapy of a different kind.

Last Wednesday O and L had the opportunity to try paddle boarding at an event that was run by Sensory Souls.

Sensory Souls is a Queensland based organisation that organises, coordinates and conducts sensory friendly events for individuals with special needs both in Queensland and in other states of Australia.

Individuals, both children and adults, with special needs often have sensory processing difficulties and as such they may find it difficult to participant in outings such as going to the movies or to other special events. Sensory Souls evolved from Sensory Santa sessions to sensory friendly movie days to other events such as paddle boarding.

A sensory friendly event typically looks like an outing in which the number of participants is kept to a low number or the noise is low and the lights are dimmed in the venue. By minimising these sensory inputs, the likelihood of a meltdown occurring due to an individual entering into sensory overload is lower.

We've participated in a number of sensory friendly events in Western Australia and every time O and L have had a ball.

During the first week of the school holidays, a paddle boarding event was run not far from where we now live. When I saw the event advertised I thought that it would be the perfect activity for both O and L to participate in.

Not only would they get to try something that neither of them had done before but it would also serve as a therapy activity. Paddle boarding would work on their core strength or their proximal stability, it would be an opportunity for them to work on their gross motor skills and balance or provide some vestibular input. The event would also give both O and L the opportunity to practice their social interaction skills as well! Remember, I can turn any activity into a therapy activity!!

I am so glad that I registered O and L for the paddle boarding because it was a huge hit with the both of them. They had a blast and they've both requested that we find somewhere where they can do paddle boarding again!

Thanks to the generous sponsors of the event, every participant received a back pack prior to the start that contained a beach towel, a cap and a bright blue rashie! O and L were just as excited about the backpack and goodies as they were about the paddle boarding. L thought the rashie was just the best - "I real surfer dude now!" 

The rashie's also assisted the volunteers to identify the children and young adults who were participating in the paddle boarding. The event was closed to those who had registered and the rashie's just helped them to stand out!

Both O and L were very eager to get into the water, despite the grey sky and looming rain clouds! When the instructors told all of the participants to stand by a board, it was a race between O and L as to who could get to the boards first!

It was wonderful to see such a huge range in ages of children and young adults enjoying being out on the boards. Every participant was assigned a volunteer so there was full supervision of everyone throughout the event. This also meant that the parents and care givers could stand back and marvel in what their children were doing! I was well prepared that I may have to get into the water with one or both of my little superheroes, so I was pleasantly surprised when I was able to stay dry!!

The volunteers were all wonderful with the children. They were all so very patient and understanding. The children and young adults were setting the pace as to what they wanted to do. There was no pressure whatsoever put onto the participants that they had to stand up or had to get into the water.

O took to paddle boarding like a duck to water. She found her balance very early on and spent most of the session standing on her board.

At one point O paddled over towards me and shouted "Mummy, Mummy! I can stand, I can steer, I can change directions, I can stop. I'm an awesome grommet!!"

L had a fun as well - he mostly wanted to sit or lay on his board! He also showed off his diving and swimming skills to his very patient supervisor!

All in all, the paddle boarding was brilliant. I can honestly recommend the events that Sensory Souls organises to all families who have children or young adults with special needs. There is a lot of thought and effort put into the events.

So thank you Sensory Souls and all of your volunteers for an amazing opportunity. Both O and L loved paddle boarding and want to try it again. Also a huge thank you to Surfing Australia, Rip Curl, Sunshine Coast Surf Schools, Weetbix and Macquarie Sports for your support of Sensory Souls in running these paddle boarding events. I can only speak on behalf of my two children, but we really appreciate the opportunity to participate in these types of events.

Siblings and Autism.

Myself and my husband Scott, a.k.a. Daddy Superhero, have always been very conscious of the fact that at times O misses out on participating in activities that she loves due to the fact that L simply doesn't cope well in certain environments.

O has always been a sociable child - at times she may have taken a while to warm up to those around her, but there has rarely been an activity that she hasn't wanted to participate in. She does struggle participating in activities that require her to be social with children but she will usually just get on with the activity by staying by herself.

L on the other hand, from a very young age, struggled in over crowded, noisy and busy places. His go to method to get away from the busyness was, and still is, is to physically run away from the area, or he enters into meltdown mode due to being over stimulated.

In the past prior to receiving L's diagnosis of ASD, as a family we would put off going pretty much anywhere so that we would avoid a meltdown. And if ever there was a change in routine or if we had to change the activity that we were going to be going to, cue a meltdown from L.

But to O's credit, not once has she ever complained that she has missed out an activity because of her little brother not coping. She simply accepted that the reason we didn't go is so that L wouldn't become distressed.

When we received L's diagnosis everything made sense. The saying "behaviour is not done on purpose, it is done for a purpose" rang very true.

The more that we examined the reasons for L's behaviour, the more we began to understand what he was trying desperately to tell us.

After receiving L's ASD diagnosis, we sat down with O and explained to her, using a story book, that L had autism and that was why he did what he did but that his autism did not excuse his behaviour if he was misbehaving.

After this O showed just how caring, compassionate and tolerant that she really was towards L. She has always been this way, but her compassion increased ten fold. She became even more protective of L - god forbid if anyone picked on her little brother. And when L was in meltdown mode in public, she would explain to complete strangers why L was melting down.

But she has never shown any resentment towards L, and for this I am so very proud of her and very grateful.

It makes my heart sing very happy tunes that O is the child that she is. But there have been many a time when I have felt incredibly guilty as I've felt as though I've been devoting so much time to L and yet I feel as though O misses out. I felt, and still do at times, as though I was spending very little time with O.

At the beginning of last year Daddy Superhero and I decided that we would make a conscious effort to ensure that O, and at times L, didn't miss out on doing what they wanted to do because of their sibling.

Just like it is important for us parents to have "me" time, every child in the family needs "their" time with Mummy and Daddy.

So what can we do as parents to ensure that siblings don't miss out on their own special time?

As a family we ensure that we make time with both O and L. This time is just for them, their one on one time with myself or with Daddy Superhero. Juggling the demands and individual needs of all family members can be challenging for all families - the lack of hours in the day and some times the lack of energy can both cause challenges. But for us it is incredibly important that both O and L have their own time where we are able to focus just on them eve when we are exhausted. Sometimes it is as simple as a coffee date with Mum or Dad, sometimes it is an outing to the movies. For L he just loves going to a playground. But what is important in every one of the outings is that it is one on one time devoted to O or L. Phones are ignored and we devote all of our attention to O or L.

We ensure that we go on family outings on a regular basis, but at times and depending on what the outing is, O will go on an outing with one of us while the other stays home with L. And surprising L is incredibly happy to stay at home - he has the full attention of whoever stays home with him, he has all of his beloved superhero toys and he doesn't have to share with his sister!

If L knows that a particular outing is going to be noisy or busy, he will happily choose to stay at home. And if he is aware in advance that our plans have changed, then again he is happy to stay at home! L is my little homebody!

There are activities that should be shared by the whole family so as to create those precious family memories but then there are activities that don't necessarily have to be attended by the entire family.

If we are on a family outing and one of my little superheroes enters into meltdown mode - one of us will stay with the little superhero who is in meltdown mode to help them to calm and the other will participate in the outing with the happy little superhero. This way, we don't all miss out. It is incredibly difficult to walk away from a child melting down and I always have to remind myself that the other little superhero needn't miss out. In saying this, most of the time the happy little superhero will want to go back to check on their sibling! They really don't like seeing each other in distress.

We ensure that we are fair with both O and L. As I have said many times on previous occasions, autism does explain O and L's behaviour at times, but it certainly doesn't excuse their behaviour if they are misbehaving. In our house, rules are rules and there are consequences for breaking those rules. If either O or L are particularly rough with one another, we will sit down and talk with them as to why they behaved the way that they did. Nine times out of ten there is an underlying cause for the behaviour but they certainly don't get away with it. We will talk with both of them about what they could have done instead of lashing out at the other and then O or L have to deal with the consequence of their actions. This way neither O or L can complain that we're favouring one child over the other.

And if O or L are having a particularly tough day, we'll sit down with both of them separately and explain to them that maybe, just maybe, we need to give the other a little slack for the day. They both understand when the other is having a tough day and are happy to occasionally let the rules slide for each other. At times, they know that the other is having a tough time before we have realised so they will remind Daddy Superhero and myself that we need to let the rules go for the day.

We openly acknowledge and celebrate the relationship that O and L have. We foster their sibling relationship and point out all of the positive aspects that we love. They may argue and bicker like every other brother and sister but deep down, the love that they have for each other is magnificent. We want them to see the positives in their sibling relationship.

We encourage both O and L to participate in activities in which they are able to make connections with other children. They both need their own time to participate in activities that they love without having to "share" their friends with each other.

There are times in which the focus of the entire family should just be on one child, rather than on both. When one of my little superheroes achieves something great, like receiving an honour certificate at school, we celebrate their efforts. The number of honour certificates that O received at school last year far outnumbered the number that L received and when L realised this he did become quite despondent in his own abilities. When this occurred, we pointed out all the great things that he had achieved through the early intervention centre that he was attending or we'd highlight a new skill that he had mastered so that L could see that he too was doing great things.

A family tradition that we started in 2017 centers around telling each other about the favourite part of our day or telling each other one good thing that happened that day as we were eating dinner. This serves several purposes - it assists O and L to focus on the positive parts of their day instead of dwelling on the negative. Telling each other about our favourite parts of the day also means that O and L could see that even though at times we may have all been on the same outing, everyone can have a different perspective on what they thought was the best part. Both O and L love this part of our day - quite often after the other has finished talking, they will chime in with "wow, that sounded like fun" or "next time, can I come too!" And quite often, if it is an outing that one of the little superheroes didn't want to participate in, they can hear just how great it actually was and they will want to participate next time.

We've found that by doing all of these things, touch wood, neither O nor L are showing any resentment to the each other. They understand that, at times, they need all of the attention of either myself or their Daddy, but that in the long run, neither is missing out on one on one attention from us.

What do you do to foster the relationship with all of your children? I would love to hear your thoughts and ideas.

Our first Kidslfix event.

This weekend just gone, we had the privilege of being able to attend a Kidsflix event that was conducted by the Arthritis and Osteoporosis Foundation of Western Australia.

The Kidsflix event was a free morning of entertainment for children with disabilities and their families. The event was held at our local cinema prior to normal operating hours. 

I had heard of these events prior to the weekend but had no idea of what to expect other than some entertainment for the little superheroes and that we were going to watch an advance screening of Paddington 2.

What I did not know is that Kidsflix events are held Australia wide. The program is designed to enable children with Juvenile Idiopathic Arthritis, as well as children with other disabilities, to have an "out of the ordinary day" with their families. All of the Kidsflix events are supported by local businesses so that the families who attend do not have to pay a cent.

When we arrived at the cinema the band of volunteers were bustling about ensuring that everything was ready for the sea of children that were about to descend upon the cinema.

There were face painters, balloon artists, a colouring in station, a Bricks 4 Kidz Lego station as well as numerous Cosplayers wandering around dressed as characters from Star Wars, Alice in Wonderland and one of O's favourite movies, Guardians of the Galaxy!

Once the event started it was wonderful to see children of all ages and abilities enjoying themselves. They mingled and played together, swapped stories on why they there and just generally had fun.

For some of the children, I have no doubt that the event was a way of distracting them from the tough times that they were enduring.

O had a ball, L went into overload almost immediately and just wanted to stim. The great thing about the event and L stimming was that no one looked twice at him. He was accepted for who he was. There was no judgement what so ever from anyone at the event.

There were many parents who looked like us - tired, very tired, but happy to watch their children being able to have fun without a care in the world. The children were able to forget their worries and just be kids for a few hours.

I am grateful to the organisers for the opportunity to attend the event - it was great morning out for us as a family.

If you ask L, the highlight of the event was seeing his friend R from school and being able to sit next to R in the cinema - not that they did a lot of sitting still!

O, well she was in her element. New children to meet and play with, babies and toddlers to look after and she was able to make a pretty cool aeroplane out of Lego.

And the movie? Well it was fantastic. It is definitely one to go and see when it officially opens in December!