There is no one look to Autism.

On a fairly regular basis I have the pleasure of speaking with people who have very little clue about autism and all that it entails.

Some times it is a pleasure, other times not so much.

Some of these people are simply ill informed about autism, some are people who have no connection what so ever with autism and are genuinely curious and want to know more and some people are just down right rude.

Over the last 2 years I've found that people who genuinely want to know more about autism, will ask questions. And people who aren't interested, well they are just rude.

This morning after O and L's swimming lessons was one such occasion.

Prior to swimming and after his lesson L was doing a lot of sensory seeking. I'm talking bouncing, spinning and just being boisterous in general. But he wasn't hurting anyone as we walked to the change rooms.

As it was just myself and the two little superheroes, I headed to the family change rooms but unfortunately they were both occupied, so we went into the female change rooms.

After entering the change rooms and getting both little superheroes into a shower, an elderly lady who should know better when it comes to using manners towards others, approached me and told me that I needed to control my child.

I very politely told her that L was doing lots of sensory seeking this morning due to his autism.

Before I could continue, she responded with "He doesn't look autistic, they look ........" and I will not repeat the word that she said. No one should ever say that word about others. The R word should be removed from the dictionary.

Now normally I would have taken this opportunity to spread a little autism awareness but she was just down right rude.

I've stopped taking comments like these to heart and I've become quite skilled at reading faces as to whether or not people are interested in learning more about autism.

When I get the inkling that learning is not possible, and sometimes it just isn't possible to enlighten members of society, I fall back onto one of my sarcastic comments like the one below from my good friend over at It's A Tink Thing.

But each encounter with someone who utters the phrase "but they don't look autistic" gets me thinking - what do you say to someone who doesn't think that your child looks autistic?

What is the look of Autism?

The thing is autism doesn't have a look.

No I'll take that back, autism does have a look.

At superhero headquarters autism looks like a child with red curly hair and bright blue eyes. Autism in our place looks like a child with a wide smile on his face whenever he is engaging in his most favourite pastime - playing with his superhero figures.

Autism looks like a child who loves green apples and strawberries but who will not touch a red apple.

Autism looks like a child who spoke a grand total of 20 words up until his third birthday.

Autism also looks like a child with strawberry blonde hair that goes super frizzy when the air is humid. Autism looks like a child whose eyes change from the brightest of blue to grey when she is confused, sad, frightened or tired.

Autism looks like a child who loves to read The Complete Works of Shakespeare for fun.

Autism looks like a child who taught herself the three times table when she was three years old.

Have you figured out where I am heading with this?

There is no one look to autism.

Each encounter also leaves me feeling either grateful that I have been able to spread a little autism awareness OR feeling incredibly angry due to the rudeness of the other person.

When someone says "they don't look autistic" I don't think that they consider how hurtful the comment is to parents or to individuals with autism.

The comment invalidates all of my efforts as a parent to assist my children to understand the world around them. 

The comment invalidates all of the battles that we have gone through as a family and all of the triumphs that we've celebrated so far on our autism journey.

The comment invalidates all of the hours that have gone into taking L to therapy so that he can learn new skills.

When someone says the comment to be rude, I take it that they are implying that we have wasted our time over the last two years first in gaining L's autism diagnosis and also in seeking therapy for him, because to them he "just looks normal." But then what does normal look like?

And by them comparing their experience with autism, which let's face it may have been watching the movie Rainman, they have made an error. 

They have forgotten that autism is in fact a spectrum, and a very wide spectrum at that. 

And because autism is a spectrum, there is no one look.

The look of autism is L and it is also O. It also every other individual that you may meet who is on the spectrum.

Autism is a very beautiful thing!

Why do my little superheroes show their vulnerable side to me?

Have you ever been told comments like the following by complete strangers?

"Your children are so well behaved and so well mannered."

 "It is wonderful to see such polite children, you're doing such a great job with them."

"O is so well behaved in class, she's a pleasure to teach."

What????? My little monsters, I mean, my children????? Good golly no, you must be mistaken! Are you sure you not talking about other children?

Both of my little superheroes are often complimented on their manners when we are in public. I usually smile graciously, thank the stranger profusely and then make a hasty exit in the opposite direction and hope that they don't stumble upon us when the little superheroes are in the midst of a meltdown!

And as we're walking away my mind will flash to earlier in the day when I could have sworn that my little superheroes were trying to kill each other while they were waiting to see who could cause my head to start spinning first.

At home it feels as though both of my little superheroes are at each others throats constantly. They do play nicely with each other, but the majority of the time they are arguing or antagonising one another. I may be over exaggerating the amount of time, but some days I feel as though I am just a ring side referee.

However when we are in public, my little superheroes turn into polite and well mannered children. They say please, thank you and excuse me. They are polite to each other, to us and to others and they are helpful.

And this is when we receive the compliments.

Compliments that cause me to feel like a complete fraud.

Compliments that cause me to become frustrated because I know that the minute we arrive home, the polite children will disappear and the arguing will begin, again.

And then I remember that my little superheroes show their vulnerable side to me because I am Mum, I am their safe place. I am predictable and I love them unconditionally. And they both know this.

Home is their safe haven where there is no judgement from others. Home is the place where they are accepted for who they are.

And that is when I sit back and think that yes I am doing a great job at raising my little superheroes to be polite and well mannered children.

I don't lose my s&*# all that often and in public may two are good, no great, kids.

I also figure that I would prefer my little superheroes to be little terrors at home and polite in public, rather than the other way round.

So the next time you are pulling your hair out as to where your polite children have disappeared to, keep this post in mind!

Thank you.....

Teacher aides play an important role in classrooms all across the country in assisting students and teachers.

So it is only fair that on the first Friday in September, teacher aides are recognised and thanked for all that they do to support students, special needs or not, in school classrooms and in the playground.

We have been incredibly fortunate to have had some fantastic teacher aides assisting L and O at school both this year and in previous years.

So to you all, I thank you.

The dedication of you all to both of my children brings tears to my eyes and reassures me that at school they are both in very capable hands. 

I know that when I leave my children at school in an emotional state, that you all know just what to do to calm and reassure them both. This makes leaving them in an emotional state just that little bit easier.

Thank you for stepping in and giving them an all reassuring "mum" hug when I am not able to be there for them.

Thank you for always being positive and enthusiastic when around my little superheroes. Both of my little superheroes regularly speak of you all at home. What you say is gospel! 

I regularly see the love and trust that both of my little superheroes have for you all and I truly hope that you can see it too. They may not express their gratitude to you on a daily basis, but they do appreciate everything that you do. And so do I.

My little superheroes can sense when others are showing them love and compassion. They can sense this from a mile away. They just know when people are truly invested in them. Thank you for working hard to gain their trust.

To you all I thank you for being their advocate at school. Thank you for being their voice when they struggle to find their own when they are in sensory overload. 

It warms my heart that you have learnt my little superheroes personalities, their little quirks, their strengths and their weaknesses. Thank you for being able to pick up on their cues when they require brain breaks or a little extra reassurance that everything is going to be okay.

Thank you for acknowledging and celebrating all the successes that L and O have achieved whilst at school, no matter how small the successes are.

I know that you have days which are exhausting and discouraging, but thank you for not giving up on my little superheroes. Thank you for throwing 100% of yourselves into loving, nurturing and caring for my little superheroes while they are in your care at school.

Mrs DC and Mrs S, I loving watching when L gives you hugs and kisses and I can see how relaxed he is when sitting with you. I see the gentle hand that you use to help guide L into the classroom and how you keep a watchful eye on him to make sure that he is always safe.

Mrs L thank you for your ever watchful eye on O as she learns to read others emotions. Thank you for being there when she struggles with her anxiety. Thank you for assisting her to participate in social activities with her peers.

If I was able to, I would give each and every one of you a pay raise. But alas I am not able to do this.

What I can do is offer you my heartfelt gratitude for everything that you all do for both O and L.

I am truly thankful for all that you do for O and L.

Why is support for Autism lacking?

I have often been asked the questions - "why is support for individuals with autism lacking?" and "why do you have to fight so hard for support services?"

There is no hard and fast answer to both of these questions but before I can attempt to answer them, there is a little background information about my little superheroes that you need to know, so bare with me ...........

On the mornings when we are having a rough time at home, I will rarely call the little superheroes school after I have completed the school drop off. I will write in the little superheroes communication books to their teachers prior to school drop off, but I will rarely call.

And the reason is that at school I know that both of my little superheroes will settle, they will conform to what is expected of them and they will both appear to be happy despite the turmoil at home prior to going to school. They both get on with their day despite what had occurred prior to arriving at school. They may need extra sensory breaks or brain breaks as L has taken to calling them, but they do get on with their day.

Prior to gaining L and O's autism diagnosis, we were often accused of providing a lack of discipline and a lack of structure at home. We were often told that L's behaviour was a result of our parenting style. We were regularly asked "are you sure that is how they are behaving?" We were accused of lying or of over exaggerating the behaviours. All of the behaviour was put back onto us as parents - it was all our fault.

I have had to resort to recording videos of my little superheroes when they are at their most vulnerable at home to PROVE what I am describing to professionals. I should not have had to do this and yet, at least once or twice a year, I have to.

And then when we received the final diagnostic reports for both L and O, we had to start proving that the behaviour was occurring all over again. This time to funding bodies.

According to the medical and education professionals that we spoke to, the common denominator for L's poor behaviour was us, his parents. When it comes to a child's poor behaviour it appears to be quite easy for professionals to jump to conclusions and place the blame directly on "poor parenting decisions."

Unfortunately for us, the poor behaviour was rarely seen outside of our home.  

The act of behaving one way at home and another outside the home has a name. It is known as Autism Masking or autism camouflaging and it is more common than you'd think among individuals with autism.

When a child acts differently at school, when they put on the mask, this makes it incredibly difficult to access the support that they desperately need. They are denied access to inclusion services due to their presentation outside of the family home.

Autism is a very complex and confusing (at times) disorder, and yet many individuals learn when they can and can't explode. O is a master of this! O knows that standing out in the crowd is not a great thing to do and L is slowly picking this habit up. They both know that they can show their vulnerable sides at home as there is no judgement from us. They will both internalise their anxieties and frustrations throughout the school day and explode when they walk through the door at home in the afternoon.

Many medical and education professionals have the mistaken assumptions that if a child truly had challenges, the challenges would manifest in all settings in exactly the same way. 

And as a result the consequence of these assumptions is that children are left with little support as they are unable to access the support services that they need and families are left to struggle.

So what needs to change so that our children can access the support services that they need? What needs to change so that the support is more readily available?

In my mind there are two areas in which changes need to be made and the changes more have to do with the thought processes of medical and education professionals than anything else.

The first change that needs to be made is that medical and education professionals need to be more understanding and be willing to listen to a parent when they are describing the way in which a child behaves at home. 

Just because you don't see the behaviour on a daily basis, does not mean that the behaviour doesn't occur.

I am yet to meet an adult who doesn't go home and moan to others to let off steam after a rough day at work. While adults generally don't arrive home and immediately enter into meltdown mode, there are days at work where I am sure that we all put on a mask and pretend that life is great. When we are put into a different environment than what we are used to, we will all change to suit the environment. When we are all put under stress, our coping mechanisms come into play.

Children are no different.

There are many stresses in the classroom that teachers, at times, are not aware of. There are sensory issues that will affect some students more than others. There are the stresses of needing or wanting to conform to the expected norm so that they blend in with the crowd. Then there are the academic pressures that are placed upon students throughout the school year.

All of these stresses alone are enough to cause anxiety to bubble to the surface in any child. If all of these stresses are combined, then you have a recipe for internalising anxiety and a behavioural explosion at home.

The second change that needs to occur is that medical and education professionals need to be much more aware of the many different ways in which autism can present. The saying "so you've met one person with autism" can not be more appropriate when it comes to support for individuals with autism.

When a child does not present autism traits in the manner in which professionals are familiar with, this causes confusion. It can't possibly be autism, can it?

Traits can be seen just as "quirky features" of a child and a parents concerns are dismissed.

A child who makes eye contact, they can't possibly have autism, can they?

Children with autism aren't social, are they?

Every individual with autism presents differently - no two individuals are alike. There are traits that are similar between all individuals and then there are traits that can present as though they are on opposite ends of the spectrum.

Girls will often present autism traits quite differently to that of their male counterparts and this in itself causes difficulty for students to access services and funding.

Girls are fantastic at copying or mimicking their peers and as such girls, generally speaking, are not diagnosed until after the age of 6 or 7 or until they hit their teenage years. Obtaining an autism diagnosis for a girl can be a very challenging process due to their innate ability to copy the behaviour of others.

All professionals need to remember that the autism is a spectrum - a very wide spectrum.

I have two children and both present completely differently to each other. They are alike in some ways but completely different in others.

If these two changes alone occurred then parents would begin to feel less alone and not belittled by the professionals who are meant to be there to support them.

If these changes occurred, then perhaps the support for individuals with autism would increase or be easier to access.

Music is the Universal language!

When I was a child I loved music. I started playing the Alto Saxophone at the age of 11 and by the age of 18, I was in numerous concert and Jazz bands. I'd travelled overseas with the Jazz band and I'd also performed as part of a concert band at numerous concerts, festivals and stage productions and at an international school sports competition.

Music was one of my escapes. I found that when I was playing music, my anxieties disappeared, I was able to think clearly and I was relaxed. My worries disappeared and I was able to be me.

And it would appear that O has inherited my love of music, in particular a love of singing. When O is singing, her anxiety completely disappears. Like Mother, like daughter!

I've known about the benefits of music due to my own experiences with music but it has only been since both O and L have been diagnosed with autism that I have begun to look into just how beneficial music is to children.

When children, special needs or not, engage in musical activities, their brain is changed for the better. 

Through music, children learn to communicate and cooperate with others, they learn to problem solve and begin to focus better on the task at hand. Children gain immense confidence by participating in musical experiences. Music also provides lessons in perseverance and discipline. All of these are essential skills that are needed by children to be happy and successful.

Playing a musical instrument can assist in the further development of fine motor skills and fine motor control. 

Instead of using words to communicate, children can use a range of musical activities to communicate with others - singing, playing a musical instrument, improvising to music to name a few. Through these activities, children learn to communicate with others, they participate in social interactions, they can practice eye contact and turn taking with others.

O has mentioned numerous times that she would like to learn to play the piano or the violin or the flute or the ........

The instrument keeps changing but she is adamant that she wants to learn to play an instrument of some description!

From a very young age, O has always loved singing. When O started at the school that she currently attends she found out that the school had a choir. And since that very first day she has been desperate to join the choir. On the first day of school this year, O said "I'm in year 3 now so I can try out for the choir!"

The day the choir try outs were on, she wanted to be at school nice and early so that she wouldn't miss it. O made the choir and she hasn't missed a single choir practice all year.

Just recently her school choir participated in the Schools Make Music 2017 Concert Series at the Crown Theatre here in Perth.

The choir has performed at school assemblies throughout the year, but the Crown Theatre was going to be the largest venue so far that they had performed at.

Prior to the concert O was an absolute mess. From the minute I collected her from school to the minute we arrived at the Crown, her anxiety was very visible.

However as soon as her teachers collected the choir in the foyer of the Crown, O became as cool and calm as a cucumber.

From where I was seated in the theatre, I had a clear view of O on stage and not once did her anxiety show through.

Her choir was one of the smallest in numbers to perform, but what they lacked in numbers they made up for in their combined voice. They sang beautifully and very loud!

Apart from O's school choir, there were two other performances that really stood out for me due to background of the students in the performances.

The first was a 5 piece all girl band who performed their own song with an underlying theme of depression. They looked and sounded incredibly nervous but the song was quite powerful and the fact that they got on stage in front of hundreds of people and performed was incredible.

The second act that I thoroughly enjoyed was a drum line of students from a special education unit. You could see the pure joy on the students faces as they performed on stage. It was wonderful that even though their act was quite simplistic, they were given the opportunity to perform at the concert. It was just a shame that others seated around me, could not see the performance for what it was. Students enjoying making music. I was horrified by some of the comments that were being made throughout their performance and I made sure that those making the comments knew that I wasn't impressed - lots of glaring occurred!

The concert really did show that music is a "universal language" and that it is something that everyone can participate in and enjoy.

There was a wide diversity of students involved in the concert and their abilities ranged from beginner students to students who were very obviously quite advanced in their music ability.

The concert showed that music is a beautiful way to open the door to a greater understanding of the world around us and of each other and to connect with others.

Behaviour is not done on purpose. Behaviour is done for a Purpose.

Just recently I read a comment on a social media site that disturbed me on so many levels. The comment was:

"Do you know what I can't stand? Children who hit their parents. It's absolutely disgraceful. You are the parent, where is the respect."

Now I don't know the background to this comment or the family involved, but the person who made it is an Early Childhood Educator and this alone worries me.

It appears to me that the person who made this comment did not take the psychology and development of children into consideration before passing judgement on the child and family involved and that is very disconcerting.

They haven't examined the actions of the child from another angle prior to passing judgement.

All children, regardless of whether they have autism, another special need or none at all, ALL children are still learning to recognise and manage their BIG emotions.

BIG emotions that can be incredibly overwhelming at times.

BIG emotions that do cause children to lash out in frustration.

When a child lashes out, there could be an array of reasons and possibilities as to why they have lashed out and quite often it is not due to a lack of respect towards their parents.

Children lash out when they are tired, when they are feeling unwell, when they haven't yet grasped the concept of sharing and turn taking......

Lashing out at others, including their parents, isn't an excusable action but there is generally a reason behind the child's actions.

I am constantly reminding myself that a child's behaviour is not done on purpose, it is done for a purpose.

My role as a Mum and as an Educator is to work out what that purpose is and to provide and equip the child, be it my own children or the children in my care at work, with the skills that they need to be able to communicate their needs and wants. 

O and L often lash out at myself and Daddy Superhero and when they do it is not due to disrespect on their part, it's often due to their frustration at being unable to convey their feelings at that point in time. They lash out when they enter into sensory overload. They lash out when they enter into meltdown mode.

And when there is an underlying reason as to why they have lashed out, I show O and L compassion and understanding. I get to the bottom of why they have lashed out. I end up with much happier children when I do this. I can only imagine what would occur if I jumped to conclusions and condemned their behaviour.......

When others who were following the thread started commenting about children with autism and how they struggle to understand their own emotions and that they do lash out at times, others started chiming in with comments such as:

"Even children with additional needs should not hit their parents."

"Parents still need to set boundaries for children with autism."

"Children with autism need to learn from an early age that hitting is not okay."

When I read these comments, the only thing that I could say was WTF??? Plus a few other expletives that I will not repeat.

Really? So much judgement from education professionals who should know better.

Individuals with autism will often lash out when they are in sensory overload, when they are in meltdown mode and when they are unable to communicate their needs and wishes. They mean no maliciousness, they are simply communicating in the only manner that they know how.

I would love to know how these people would get through to a non-verbal child with autism that "hitting is not okay." How do you explain this to a child whose executive functioning is still developing?

How do you explain this to a child who does not understand or recognise their own emotions, let alone the emotions of others? How do you explain this to a child whose sense of interoception ** is still developing?

Yes individuals with autism do need to understand that violence is not okay but when an individual is in meltdown mode, all sensibilities really do go out of the window. An individual in meltdown mode is not aware of their actions.

I have felt the judgemental stares and have heard the judgemental comments from others when O and L have been in such an emotional state that they've lashed out at me.

These stares and comments are not helpful in any way shape or form.

And when the comments and stares are from education and medical professionals, they hurt much more deeply.

Over time O and L will come to understand that hurting others is not an acceptable behaviour but in the meantime I will keep reminding myself that -

Behaviour is not done on purpose. Behaviour is done for a purpose.

Note:
** The sense of Interoception is a relatively unheard internal part of the sensory system in which the internal physical and emotional states of the body are detected, recognised and responded to. Interoception skills are required for a range of basic and advanced functions - functions such as breathing, hunger, going to the toilet, being aware of your own emotions which includes being able to manage your emotions proactively. When children have not yet developed interoception skills they will struggle with their own emotions. They will struggle with being able to respond appropriately to their own and others emotions and in social interactions.

Happy First Blogiversary to me!

Exactly one year ago today on the 27th of August 2016, I made the decision to start a blog about our autism journey.

At the time, I found that I was struggling to clear my mind of everything that we were experiencing along the way. I wanted to be able to write my thoughts down and I figured that having my own little space on the Internet would be a great way to go about it. My initial goal for my blog was to clear my head and share our experiences.

When I started this blog, it was very clear in my mind about what I wanted to write about. I wanted to share the highs and lows of our autism journey. Everyone likes to share the highs that they experience but not many people like to share the lows. Sharing lows seems to be somewhat of a taboo subject.

Along our journey thus far I have found that it is refreshing to hear the lows of other families as you begin to realise that EVERYONE experiences the lows. You don't feel as alone when you hear about the trials and tribulations of other families. You gain a sense of relief that we're not alone on this journey.

When I began my blog I honestly didn't think that anyone, perhaps other than my family and friends, would read the ramblings of an Autism Mum! But wouldn't you know it, word got out and the page views gradually started climbing upwards! And even better, it wasn't just family and friends who were reading my blog. This was a huge boost to my confidence!

After publishing several pieces, I received some incredibly positive feedback about both my writing style and the content of my posts. It was then that I realised that I had the opportunity to raise a greater awareness and acceptance of autism through sharing our families experience.

No two autism journeys are the same, autism is a spectrum after all. But the more awareness that there is on how autism can present, the more acceptance there will be.

I truly hope that going forward, my blog provides an insight into what life is like with two children with Autism as well as educating, inspiring and supporting others who are also on this journey.

From the bottom of my heart thank you for reading my ramblings and for joining us on our journey.

Happy First Blogiversary to me!