Autism is for Life, part two!

This is the second video in my Autism is for Life series - it features children, teenagers and adults who have all been diagnosed with Autism Spectrum Disorder. April world wide is Autism Awareness and Acceptance month.

There are many myths and stereotypes floating around about Autism. In this video I wanted to show that Autism is for life - children, teenagers and adults all live with Autism. 

Autism is for Life.

Autism does not miraculously disappear when an individual turns eighteen years of age. Individuals may learn different strategies that they can use in different situations and environments. Some individuals may learn how to appear "normal," whatever that may be, so that they don't stand out from the crowd. But the Autism is always there.

Children who are diagnosed with Autism, grow into adults who are living with Autism. All individuals need support and love. They all want to be accepted for who they are.

Enjoy!

Theory of Mind and Autism

Over the past few years since we received L's and then O's ASD diagnosis, I have heard a lot about and have read a lot of articles that focus on the idea that individuals diagnosed with autism lack Theory of Mind.

I've very briefly touched on Theory of Mind in a previous post so I thought that it was time for a more detailed post on this subject.

Theory of Mind, or ToM as it is often written, can be briefly defined as having an understanding that the minds of others are different from our own. In particular the understanding that other individuals have different thoughts, feelings and perspectives than our own. Theory of Mind provides us with the ability to put ourselves in the place of others to try and figure out what or how they may be feeling or thinking at any particular moment in time.

Theory of Mind is crucial for us all as we navigate through social interactions. We use Theory of Mind when analyzing, judging, and making calls on the behaviour of others. We use Theory of Mind to predict the behaviours of others based on what we think that they might be thinking. For example Theory of Mind assists us when we are empathising with someone who is having a tough time, even though we may be having a great day.

Every time I hear or read about Theory of Mind, the same example is shown or spoken about. It is called the Sally-Anne task. In the Sally-Anne task, a child must determine what another child's response would be as to the location of an object. One of the examples that I have seen is that Sally places an object into a hiding spot and then leaves the room. Anne then moves the object to another hiding spot. When Sally returns to the room, the child (who is observing this) must indicate when Sally WILL look for the object.

If the child's Theory of Mind has developed, the child usually answers that Sally will look in the original hiding spot as she is not aware that the object was moved after she left the room. In terms of a developing Theory of Mind, this is the response that researchers are looking for.

If a child's Theory of Mind has not developed, the child will usually answer that Sally will look in the other hiding spot. That's the last spot that THEY spotted the object in so therefore they think that Sally will know that is where the object is hidden. 

In typically developing children, Theory of Mind usually begins to emerge between the ages of 4 and 5. During this period, children typically start to think about other children's thoughts and feelings. In the Sally-Anne task, researchers have shown that the responses of children under the age of four years, is inconsistent. Whereas the responses of children aged 4 to 5 years, become more consistent in that they understand that while they have seen where the object was moved to, Sally didn't.

Theory of Mind continues to further develop as a child grows older. For the next few years, they learn to predict that what one person feels/thinks about a topic is not necessarily the same as the next person. As Theory of Mind further develops, children begin to understand complex language that relies heavily on Theory of Mind such as lies, sarcasm and figurative language.

There is a train of thought that our Theory of Mind is constantly developing even as adults as we have more opportunities to experience life, and observe people and their behaviour. I tend to agree with this.

So how does Theory of Mind relate to Autism?

It is thought and has been shown that Theory of Mind doesn't develop fully in individuals diagnosed with ASD until much later in childhood. In some cases, Theory of Mind doesn't begin to fully develop until individuals reach adulthood.

The reason behind this thought is that most individuals who have been diagnosed with autism, lack the awareness that others can have different thoughts, beliefs, opinions and so on from themselves. Individuals diagnosed with autism need to work much harder to develop their own Theory of Mind.

Well, O and L are both examples of individuals whose Theory of Mind is still developing. Yes they are only 9 and 6, but compared to typically developing children O and L's Theory of Mind is still in the developmental stages.

At the age of 9 O is well aware that she thinks differently from others in that she thinks in pictures and sounds, but she struggles to put herself in others shoes in relation to the idea that not everyone thinks and feels the same as her. She is developing more skills in this but she also still struggles.

Both O and L struggle to interpret particular social cues especially the non-verbal cues that we all take for granted that are scattered throughout social interactions.

As a young child, L exhibited inappropriate reactions and responses to others emotions. He often would not respond to us or to O when we were sad or angry. He wouldn't respond when we were happy. And if he did respond, it would be a totally inappropriate response. He still occasionally struggles with his responses. The look on his face now is that he knows he should respond in some way, he just isn't sure how to respond.

For a time O also struggled with this. One example that I can recall vividly is when I took her to watch the movie "The Good Dinosaur" at the cinemas. All throughout the movie, particularly in scenes that I thought were quite sad, O was laughing her backside off. In fact she thought that the entire movie was quite hilarious. Meanwhile other movie goers were crying during different scenes in the movie. Although they did end up laughing due to how loud O was laughing!

O struggles in responding the social expected way when someone says hello, good morning or good afternoon to her. If you are in the place where you are meant to be, ie: at home, she often won't respond. You're where you are meant to be, in her mind, she shouldn't need to greet you. However if she spots you in a setting where she doesn't expect you to be, then you can expect a completely different response.

O struggles to understand why children her age say one thing and yet they mean another.

L still struggles to show empathy towards others. And yet O on the other hand can be over-empathetic at times. She lacks the understanding that at times there is such a thing as too much cuddles. I've lost count of the number of times when we've had to remind her that the child she is cuddling, really doesn't want to be cuddled anymore, which is why they are struggling to get away from her!

Both O and L regularly cause frustration in each other and in us when they say "Do you know where the thing is?" or "Did you see that?" What thing?????? At times they simply do not comprehend that we either didn't see something happen or that we haven't seen the toy/book/object that they're referring to. We constantly have to remind them that they need to describe said object or toy or movie scene that they're referring to so that we know what they are talking about! Although I have a feeling that this is all children in general but it does relate back to a child's Theory of Mind!

All of the above examples can be indicators that a childs's Theory of Mind is still developing.

So how can we assist a child's theory of mind to develop? How can we help a child to tune into the thoughts and feelings of others as well as tune into their own thoughts and feelings?

When talking with O and L, we talk about how we feel or what we are thinking in particular situations. This gives O and L a different perspective on what they might be feeling or thinking at that particular time. It begins to embed the idea that others DO think and feel differently than them.

When we see other people experiencing different emotions, we talk about why they might be feeling happy or sad. We provide O and L with the language that they may need to describe how they are feeling.

When we read books we talk about how and why the different characters in the story might be feeling or what the characters might be seeing in the story. Doing this helps my little superheroes to put themselves into the shoes of others. We'll then often relate how the characters are feeling back to a time that O and/or L were feeling that same way so that they begin to understand that other people have the same thoughts and feelings as they do.

We encourage both O and L to engage in role play games and if we are included in the game, we step out of the parent role and into the role that we're playing in the game. Role playing in itself assists in developing a child's Theory of Mind as it encourages the child to think and act out the role of the person that they are playing. They have to actively think like the other person.

Just simply talking with O and L about how we all feel and think provides the opportunity for them both to think deeper about their own thoughts and feelings. Talking embeds the idea that others have different thoughts and feelings from their own. It also begins to embed the idea that the way we all act is often based on what we think and feel.

All of these strategies assist in the development of O and L's Theory of Mind.

But one of the most important strategies that we keep in mind at all times is that the emotional perplexing behaviours that O and L often show are not done deliberately. They're done to communicate the difficulties that they are both having in understanding Theory of Mind.

My Mummy IEP reviewed.

In April of 2017 I published a blog post titled "My Mummy IEP!"

If you haven't heard of an IEP previously, an IEP or an Individualised Education Plan is a document that is developed by teachers and other education professionals in consultation with the parents for children with special needs.

The IEP outlines goals for the child to work on at school in the areas of education, social, physical and/or behavioural difficulties. It is an in depth document and really is vital for a child's academic success at school.

IEP's are meant to be evaluated, reviewed and updated on a 6 month basis so the time  for my IEP review is well and truly overdue!

Objective 1: To complete the household laundry in a timely manner.

Goal 1: Minimum progress is still being shown in regards to taking the wet washing out of the washing machine once the cycle has finished. The latest load has been washed three times this week thus far and it is currently sitting in the dryer waiting to be hung on the line!

A Behaviour Intervention Plan has been implemented with little success! It is suggested that the Behaviour Intervention Plan be modified to include hot coffee, a glass of wine or a chocolate or two.

It is suggested that a Shared Responsibility Plan be implemented so that all members of Superhero Headquarters can assist in clearing the washing machine.

Goal 2: Progress has been shown in regards to hanging the washing out on the washing line in a timely manner. Although there has been some improvement, a little more effort could be shown.

Goal 3: Progress has been shown in regards to bringing the washing in from the line once it is dry. This has been helped with the fact that if the washing is not brought in, the bats flying around at night will poop on the washing! Not a pleasant sight or smell!

Goal 4: Minimum progress has been shown in regards to folding the washing. Many a times the little superheroes  have been observed embarking on a mountain trek to retrieve their clothes!!

A Behaviour Intervention Plan has been implemented with little success! It is suggested that the Behaviour Intervention Plan be modified to include hot coffee, a glass of wine or a chocolate or two. It is suggested that a Shared Responsibility Plan be implemented so that all members of Superhero Headquarters can assist in folding the washing.

Objective 2: To sleep in own bed.

Goal 1: Minimum progress has been shown in regards to sleeping in my own bed. Numerous behaviour intervention  plans have been implemented for all members of superhero headquarters to no avail. It is suggested that a team meeting is held so that this goal can be re-evaluated and a new goal be set because this Mummy really needs to achieve the sleep level that she requires to be a fully functioning member of society instead of the Mummy zombie that she currently feels like! Although this goal of sleeping in my own bed may be a bit too ambitious so perhaps it should be omitted completely and substituted with a goal of simply getting some sleep!

Objective 3: To check the little superheroes school bags on a daily basis.

Goal 1: Progress was being made in regards to this goal until a week ago when a nasty surprise was located in a certain little superheroes school bag. Luckily the surprise was contained within a lunch container. However the smell was gag inducing and as such the container was thrown out! It is suggested that a team meeting be held to remind the youngest members of Superhero Headquarters that stashing food in their school bags does not make for a pleasant surprise!

A new objective needs to be added to my Mummy IEP, please see below.

Objective 4: To remain calm instead going bat poo crazy!

Goal 1: To remain calm and level headed when the little superheroes are doing their very best to make my head spin around. This needs to be achieved a minimum of 4 out of 5 times with 75% accuracy.

Date Started: Too many years ago to mention.

Date Mastered: Minimum progress has been shown thus far. A Behaviour Intervention Plan is recommended that consists of deep breathing exercises and counting to ten. A reward system is also recommended to be put in place to earn rewards such as a hot coffee, chocolate or a glass of wine.

Shared Responsibilities: All members of superhero headquarters need to be accountable for their actions in spinning Mummies head around! It is recommended that a visual board with prompts  be established and then scale back the prompts as progress is shown because to be perfectly honest, this may be a bit too ambitious.

What would be in your IEP if you were to compose one?

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.

Why we don't keep secrets ....

Parenting can be a difficult gig with all the decisions that you need to make to ensure the safety and well being of your children. Being a parent means big responsibilities.

One of the decisions that we made very early on in our parenting journey was that in our family we wouldn't keep secrets no matter how big or small they were. We decided that we would instead keep surprises.

This may sound like a silly decision but there is logical reasoning behind it.

Surprises, generally, make children feel excited or happy. Surprises are usually filled with joy. Surprises are usually short lived, as they're not kept for long periods of time. When you hear surprises think special outings, birthday presents or treats, think fun, think making another person happy!

Secrets on the other hand can have the opposite effect on children. Secrets may cause a child to feel sad, unhappy, worried or scared. When it comes to keeping secrets, children may be bribed or blackmailed or be coerced into not telling the secret by their friends. And if you examine secrets in general, they are usually kept for a long time.

We noticed very early on that every time O was told that she had to keep something a secret, she would become a mess. In her mind, secrets were kept forever and this is something that has never sat well with her. There have been many times when O has been in tears as she has been told a "secret" by one of her friends at school. When O is told "keep it a secret" or "do you want to hear a secret," her anxiety starts creeping up on her.

With O being so very literal whenever she is told to keep something a secret, she thinks that because it needs to be kept a secret forever this means that she can't tell a soul. Now keep in mind that the secrets that she is being told are from peers at school and, usually, these secrets involve a child doing or saying something that they really shouldn't be doing.

In the past O has been bullied at school and has been told by the child/ren doing the bullying that if O tells anyone she'll be in a lot of trouble.

No child, regardless of age, should be made to feel this way. No child should feel the burden of having to keep a secret, regardless of whether it is a good secret or a bad secret.

By telling O and L that we don't keep secrets in our family, even the small and seemingly harmless things like buying a gift for someone or having an ice cream treat, we are also instilling in them that we don't keep big secrets that could potentially be unsafe or not very nice.

We explain this concept to O and L by saying that a surprise is something that we want others to find out about eventually. A secret on the other hand, people may not want others to find out about because the secret might not be a very nice thing to do or say.

We also encourage both O and L to talk to us at any time that they feel uncomfortable when someone tells them to keep something a secret. And when they do come to us with secrets that they've been told, we praise them and let them know that they have done the right thing by talking to us.

We're  quite fortunate, depending on how you look at it, in that at this point in time neither O nor L are very good at keeping surprises or secrets. But in the future this may change and we want to set them up now with the skills so that they will feel comfortable in telling others about the secrets that they've been told to keep.

I am also very happy to say that the concept of not keeping secrets is making sense to both O and L. On numerous occasions, I have heard both O and L exclaim "but we don't keep secrets in our house!" And when I hear them say that, I think to myself, they get it and they're not afraid to tell others!

And to O and L's credit, whenever someone tells them a secret, they come straight to one of us!

Go my little superheroes!

Autism Is For Life.

It is astonishing the number of people who say to us "oh, they'll grow out of it, won't they?"

No, no they won't. This statement really shows just how little understanding there is about Autism by society.

Autism is for life.

Children who are diagnosed with Autism grow up to become adults living with Autism.

Autism is not something that you miraculously grow out of the minute you turn eighteen years of age.

Individuals may develop or learn strategies that they can use when in sensory overload or to manage anxiety or when they are in other situations. But Autism is not something that you grow out of.

And due to the misconception that Autism is something that an individual will grow out of, the supports are often not in place after an individual turns eighteen years old.

Autistic individuals need support, no matter how old or young they are.

So here is my little bit towards spreading a little more Autism Awareness and Acceptance!

Enjoy!

Navigating Sensory Aversions

Sensory aversions are an extremely tricky facet of Autism to both navigate and explain to others. Both O and L are sensory seekers and sensory avoiders depending on the sensory input. And they can be both sensory seekers and avoiders at the same time for a single sensory input.

A sensory aversion, or sensory processing difficulties as they are more commonly known as, is often first recognised by parents during a child's toddler years when the child has an unusual aversion to noise or bright lights or clothing that is too tight or irritating or to another sensory input.

Sensory aversions have been described to us by our pediatrician and by the little superheroes occupational therapists as if O and L's skin is literally crawling when they feel, taste, hear or see a particular sensory input. The reason for this is that the taste, texture or sound of the sensory input is processed in their brain as being extremely dis-pleasurable in a skin-crawling-type-of-feeling.

Individuals who have sensory aversions to particular sensory inputs will quite often become anxious, irritable or fearful when they come into contact with said input, hence entering into a state of meltdown or needing to physically run away from the input. They're often mistakenly called fussy eaters or are told that they are over sensitive to particular sensory inputs. And if they do need to run away from the input they can be labelled as impulsive.

With O we didn't really notice any sensory aversions until she was much older but as a toddler she was a definite sensory seeker. As she has grown older we've noticed that she has aversions to loud noises. O also has aversions to particular smells, especially with different foods, either raw or when they at being cooked. We've had to trial different types of hair brushes to find one that she will tolerate.

L on the other hand from a very young age has always had aversions to various sensory inputs. He never liked anyone, including us, touching his head or even his hair. Brushing the knots out of his curls was a nightmare. Finding a hair dresser that L would allow to touch his hair, let alone cut it, was a very long process.

L has always disliked loud noisy busy places. He is becoming much better in being able to tolerate these places, but this has taken a lot of work on his and our behalf.

L didn't like to be held or cuddled for long as a baby and yet he constantly craved physical touch from us.

L has never liked wearing clothes. If he had his way he would run around naked every day of the year, even in the dead of winter. And if there are internal pockets, tags or cord on the clothing, then he will not stay in the clothing for very long. It took us over a year of constant encouragement to get L to wear shoes to school. At home and when we're out and about, he will still often go barefoot.

Now imagine trying to navigate sensory aversions when you do not have the verbal language skills to communicate what the issue is.

There were many a times prior to L's speech developing that we would be tearing our hair trying to figure out what was going on that was causing our little boy to explode. It was a case of working through and eliminating one issue at a time until we'd figured out the cause of his distress.

And trying to explain to outsiders that yes O and L don't like loud noises but they will be fine at a school disco without their block out ear protectors, well, we get some very odd looks.

Both O and L dislike loud noises - they will often wear block out ear protectors to block out the over whelming noise so that they can concentrate. And yet they both love loud music!

L loves to play with dirt, mud, paint and he also loves to eat with his hands. And yet he will become quite distressed with the feeling of what ever is on his hands once he has finished the activity!

Recently O was given a make-your-own slime kit for her birthday and a few weekends ago, O and L wanted to make their own slime.

I was prepared for L to have a meltdown but low and behold he loved it and didn't become one bit anxious when the slime stuck to his hands.

Depending on which child I asked, the slime either felt like unicorn snot or unicorn poop! In their defence, it was very sparkly!

But neither of the little superheroes complained about how sticky the slime was and they've both asked to play with it again.

So how do you navigate sensory aversions when you may or may not be aware of the underlying issue?

One of the first things that you need to do is work out what your child's triggers are. This can be time consuming and energy draining but it is well worth it in the end. To figure out what a trigger may be we will often remove one source at a time until we come to the conclusion about the issue. At times we will actively avoid known triggers but on the off chance that we're not able to avoid the trigger, we take a sensory tool kit with us - block out ear protectors and the tablet are a must!

You do need to be patient and understanding as well give your child plenty of reassurance and encouragement. I will never feel, see and hear the way that my little superheroes do but when they are able to tackle and overcome a sensory obstacle that has held them back, we celebrate. And when they are distressed, all I can do is be there for them.

We also ensure that both of the little superheroes are able to take sensory breaks at school, at home and when we're on outings to keep them focused on the task or activity at hand. Sensory breaks are also known as sensory diets.

The term "sensory diet" is thought to have been coined by an innovative occupational therapist named Patricia Wilbarger in 1984. We all need a balanced amount of sensory input in our bodies every day to allow us to work well. We may exercise, drink coffee, listen to music or retreat to a quiet place when the environment around us becomes overwhelming. Some individuals may need more or less sensory input than others.

A sensory diet is often a specialised sensory input activity plan that is carefully designed and personalised to provide a child or adult with the input that they need to stay focused throughout the day. They're often created for children who are on the spectrum or for those with Sensory Processing Difficulties. I've since learnt that individuals with dementia and Alzheimer's can also benefit from a sensory diet!

There is no easy fix to sensory aversions, you simply need to be patient and understanding of the individuals distress. And remember, they're not misbehaving, they're simply struggling in that moment with the sensory input.