Sunday, 29 July 2018

Neurotypical, Neurodiverse, Atypical ..... What does it all mean?

When talking about Autism Spectrum Disorder, there are generally a lot of terms thrown around. Neurotypical, Neurodiverse, Atypical and Neurodiversity being some of them.

The term Neurodiverse was first coined in the late 1990's by two individuals - by an Autism advocate and sociologist, Judy Singer, and by a journalist, Harvey Blume.

Judy Singer first used the term in her not well read sociology thesis that she presented in Australia (go you good thing!) in 1998. As Judy states in her book, "Neurodiversity: The Birth of an Idea," 

"I am generally credited with coining the word and Harvey for being the first in print."

Harvey Blume is credited with popularizing the word! In the September 1st 1998 issue of The Atlantic, Blume wrote -

"Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general."

But what do all these terms mean?

In the Autism world, Neurotypical refers to those individuals who have not been diagnosed with Autism Spectrum Disorder.

Atypical refers to those who have a different way of thinking, feeling and being. Those who have been diagnosed with Autism Spectrum Disorder.

Now let's talk Neurodiversity!

Neurodiversity is short for Neurological Diversity and it refers to the diversity that is present among us all in regards to our brains and minds.

To me, Neurodiversity is the idea that having differences in the way that we think and process the world around us is natural and this diversity is a valuable asset to the world in which we live.

When you think about it, there is a great deal of variation among human brains and human minds. No two people think alike. We all process the world around us in a different way. We all learn differently.

The way in which we think and process things is in part due to the differences in our cultural backgrounds and our personal life experiences. But it is also due to the fact that our brains are wired to work differently from individual to individual.

Neurodiversity should be considered as a natural form of diversity in much the same way that there are diversities among us in the forms of our ethnicity, our race, our cultural backgrounds, our gender and so on. And just like other forms of diversity, Neurodiversity can enrich societies and communities all over the world.

But unfortunately, just like other forms of diversity, individuals who are Neurodiverse are often met by hostility by those who think that there is a right and a wrong way to think, act or feel.

But and here is the kicker for all those who think that being Neurodiverse is a bad thing, Neurodiversity, just like Autism Spectrum Disorder, can be viewed as a spectrum. We're all Neurodiverse, regardless of an ASD diagnosis or not, as we all think differently from the next person.

It is important to recognise and remember that Neurodiversity doesn't only refer to Neurotypical and Autistic. There is a lot of different ways of thinking and being between Neurotypical and Autistic as well as on either side of both. 

Neurodiverse simply means that everyone's neurology is different and unique. No one person is more important or less important than the next due to the way that they think.

Let's embrace Neurodiveristy. It can only make the world a better place.

Monday, 16 July 2018

What I want YOUR children to know about MY children.

I was talking to a friend recently about explaining autism to children and it got me thinking - what do you tell children who want to more about autism? How do you explain what autism is?

As you are all aware, if you've been following my blog, autism is considered a hidden disability. You can't see how autism affects individuals and as such it can be incredibly difficult for others to understand what autism is. For children it can be even more difficult to understand what autism is when they can't physically see it.

We've been incredibly fortunate in that both O and L have friends who just accept them for who they are. They don't see the differences between themselves and my children, they just see O and L for who they are.

There are several brilliant books for children that explain autism in an easy to understand format but they are usually a generalisation about autism. And as you know, every individual with autism is different from the next.

So for those of you who want to know how to explain autism to your own children, here is what I would like YOUR children to know about MY children. And most of this is straight from O! This is what she would like YOUR children to know about her autism.

First up, you can't catch autism - you are born with it. No matter how much time you spend with an autistic person, you won't end up with autism. The reason for this is that autism is a neurological disorder that affects the brain and how it works.

Now because there are more people without autism than there are people with autism, sometimes people think that having autism means that there is something wrong. But this is not the case. Autism is a different way of thinking and feeling.

Put very simply, autism causes my children to think differently than you. Their brains are wired differently than your brain. In a brain there are pathways that the information you take in is stored and that the information travels along. In some parts of my children's brains, there are more pathways for the information to travel along and in other parts of their brains there are less pathways than your brain.

Autism causes O and L to see, hear and feel things much more intensely than their friends. Sounds and textures can be amplified to uncomfortable levels - imagine having thousands of ants crawling all over your body. That's how it can feel to O and L when their clothes feel itchy and scratchy. Imagine being in a football stadium with a capacity crowd closing in on you, that's how it can feel when they are in a shopping centre with people all around them.

When O and L start to run away from loud noises or busy places, they are doing it because they need to escape from the overwhelming sensation around them at that moment in time. At times, O and L may wear headphones over their ears. They're not wearing them because they want to stand out, they are wearing them so that they can concentrate on the task at hand. It may be to concentrate in class at school. It may be that they need to concentrate at a school assembly. The headphones simply block out the annoying background noise and they can still hear you through the headphones.

At times you might notice that O and L will flap their arms and hands or they will bounce on the spot or spin around. Some individuals may make different noises. This is called a stim or stimming. Stimming is their way of calming down or regulating their own emotions. It's a bit crazy but lots of movement actually helps them to calm down and to even concentrate! Everyone has a stim - you might tap your foot constantly when you're sitting at your school desk. You might fiddle with a pencil. O has a fabric band that goes around the front two legs of her school chair - she will bounce her feet on this in class to help her concentrate. L needs to do lots of running, jumping and climbing. Different people have different stims. L has a stim for when he is anxious or worried and a different stim for when he is excited. 

The more time that you spend with O or L or any other autistic individual, you may come to work out what their stims mean and YOU will be able to work out what emotion they are feeling at particular times. This can be useful as you'll be able to assist them before they enter into meltdown mode!

You might notice at times, that O and L enter into meltdown mode. Meltdown mode looks a little look them having a tantrum but it is the complete opposite of a tantrum. You might have a tantrum if things aren't going your way, and O and L also have tantrums. Usually you can stop a tantrum if you want to or if you get your own way. When you're having a tantrum you may have a conversation or make demands of your parents. When O and L enter into meltdown mode, they can't enter out of it whenever they like and they certainly can't have a conversation with anyone.

O and L will enter into meltdown mode for many reasons. It could be that they are overwhelmed by how busy a place is. It could be that the noise becomes too much for them to handle. It could be that something is out of place in their classroom, or that something has been changed in the classroom or in their daily routine. It could be that there is too much information going on for their brain to take in at that moment in time. It could be that teachers are giving them too much information or that they don't understand what has been asked of them so their brain becomes confused.

When O and L enter into meltdown mode, they are no longer in control of their body. Their brain takes over and shuts down the logical reasoning thinking part of their brain - the new brain. Their old brain, the cave man part of the brain, takes over and they want to run away or fight whatever their brain sees as a threat. It is called the flight, fight or freeze response and we all have this ability. 

When O and L are in meltdown mode, they may yell or scream or lash out at those around them, they may throw things or they may just sit and cry. They don't mean to lash out or to yell rudely at people, it is just the fight response taking over. When the meltdown has finished, neither O or L has any memory of what they just did.

But entering into meltdown mode doesn't excuse their behaviour. They still need to learn right from wrong and they are slowly learning what they can and can't do. They are learning what is acceptable and what is not.

What they DO need you to understand is that a meltdown is their brains way of saying "something is not right and I don't know how to tell you." They need you to be understanding - they're not entering into meltdown mode deliberately, it is a response to something going on around them. My role as their mum is to work out what is causing them to become distressed. Sometimes it is easy to figure out, sometimes it is very difficult to figure out.

What you can do is just be there for them - not too close but not too far away. Just be there so that they know that you are there for them. You could try talking to O and L calmly and tell them that everything will be okay. You could try asking O and L if they wanted to go to a quiet place in the classroom. They may not always respond but it may help them to calm down.

But know this - they will always be there for you. Once you become a friend of O and L, you have a friend for life. Both O and L find it difficult to make friends, so the fact that they call you a friend is a huge deal.

The thing is, sometimes when you say "hello" or "good morning" to them, they may not respond or say anything back. They're not doing this to be rude, it just doesn't occur to them that they should respond back. 

Social interactions, or friendships, are really tricky for both O and L to understand for many reasons. Some people say one thing but mean another. There are all the gestures and facial expressions that people use - these are all non-verbal cues. There are un-written rules in social interactions that they need to understand - like saying good morning to people. All of these and many more, make social interactions really tricky for anyone but when your brain thinks differently, it can be even tricker.

O and L just want you to be patient. They may take a little longer to respond to questions that you ask. If they don't want to talk to you straight away, give them a little time. They may not want to talk because their shoe feels uncomfortable or there is a new person in the classroom that they haven't seen before.

Individuals with autism generally like doing things in the same way all of the time. O tells me that if everything is the same then she knows exactly what is going to happen. When something changes, it causes O, L and many other individuals to become anxious. This is why they like to be told in advance as it helps them to prepare for the change.

You also might notice that O and L seem to be obsessed by particular topics. L loves anything and everything to do with superheroes. O loves anything to do with space - stars, moons, planets and everything in between. This is quite common with people who have been diagnosed with autism. They are called obsessions or special interests. Quite often an individual's special interest is what assists them to open up to new people.

The best thing to do if you want to more about autism, is ask. O can usually tell you why and how she thinks. L is still finding the words to explain his autism.

If it is another friend of yours that you want to know more about, ask them or their parents.

As a parent, I want everyone to understand autism. I want people to ask questions. When you ask questions, you find out the truth. With more understanding, there is more acceptance. I would take a bet that you just want to be accepted for who you are. O and L, and every other child and adult with autism, want the same thing. They want to be accepted for who they are, autism and all.

Autism doesn't mean that an individual is any less important or any more important than you, they're just different.

And the world needs different minds to make it a great place.

Sunday, 15 July 2018

A Short Story by O - The Five Amazing Friends - Transformation!

The Five Amazing Friends - Transformation!

One school day, five friends were playing around the trees. Their names were Livy, Jemima, Harry, Xavier and Maximus. As Livy and Jemima ran around the trees, one of the biggest trees began to glow a bright iridescent blue so they yelled out to the others, "Guys, you HAVE to come and see this!"

Maximus, as always, he was the first one to come running over. Next was Xavier and last came Harry. Maximus asked "Whoa! What is it?"

Livy replied "I think it is a portal!"

Everyone nodded in agreeance and with a burst of light, they all got sucked into the tree!

When they came out, they were in a strange land. It looked nothing like their school playground. They also looked nothing like themselves. They realised that they had all transformed into a different animal. Livy had transformed into a tiger. Jemima had transformed into a unicorn, Harry into a hedgehog, Xavier an Owl and Maximus was a cheetah.

Harry with a hint of excitement in his voice yelled "Hedgehog, yes! I wonder, can I run as fast as Sonic?"

Everyone loved their new forms, and spent sometime exploring what they could do but they all wondered why they were in this new foreign land.

Time in this land seemed to fly by and before they knew it, night had come and gone and a new day had started.

The next day as they were exploring their new surrounds, they met a lone wolf standing at the entrance to a cave. The wolf begged them to help her. She told the five friends that she needed help to regain control of her kingdom from Draco, a terrible evil dragon.

Without any hesitation, Livy told her that the five friends would be happy to help.

Harry cupped his little paws in front of his mouth and went "Pfffttttt!"

As one, Livy, Jemima, Xavier and Maximus yelled, "Not the time Harry!"

In a small voice Harry murmured "Sorry, I was trying to get into the spirit!"

The five friends huddled together and thought of a plan. Harry said "We need a name! We should be the Furious Five Animorphs!"

Jemima said "Oh my gosh, that's a great name."

So it was decided, they would be known as The Furious Five Animorphs.

Harry and the wolf were to be the bait, they would wait at the throne in the castle. Xavier and Maximus would pretend to be guards at the entrance to the castle. Livy and Jemima would hide out of sight and do hand signals to the others - they would warn the others when Draco was at the castle and when they should attack.

Somehow Draco found out about their plans and he with his army of guards snuck up on the five friends and the wolf.

When Jemina spotted Draco and his guards, she dabbed and out of her horn came the most amazing rainbow which knocked the guards off balance. Livy touched one of her stripes and she suddenly had a sword in her hands which she used to send the guards back to the evil palace with one swipe. Xavier yelled "Owww, my eyes hurt," and at the moment laser beams shot out of his eyes. Xavier started shooting the remaining guards, knocking them to the ground.

Harry started zipping around Draco yelling "Fast not slow, fast not slow," causing Draco to become dazed and confused. Maximus became super strong and started to punch the ground yelling "Kapow, kapow!"

The five friends and the wolf fought and fought until Draco was sent back to the evil palace.

After Draco disappeared, the wolf turned back into the Queen and gave each of the five friends a badge of honour.

Then before they could celebrate their success, the five friends found themselves standing back in the school ground looking like themselves - five school kids dressed in their school uniforms.

Harry, with a hint of dismay, said "Oh man!"

At that moment they heard the school bell ring for third session, so they all wandered off to their next class whispering, "What will be our next adventure!"

A Short Story Series by O!

Where is this year going? We're midway through the year and the school holidays have come to end. O has been a very busy, creative little superhero this school holidays with writing a series of short stories as well as doing some research on various topics.

I had no idea that she'd been writing and the fist short story that she showed to me, blew me away.

Whoever said that individuals with autism have a limited imagination and no creativity, needs to meet O!

When I asked if she wanted to publish them on the blog, she jumped at the opportunity. Within seconds of mentioning about publishing them on the blog, the pencils and paper came out and she was drawing pictures to go with her first short story.

So, keep an eye out for them on the blog, I have a feeling that there will be more than one short story being written in the near future! I'll be adding links to each story as O adds them!

The Five Amazing Friends - Transformation!

Sunday, 1 July 2018

Dear Ms Shanahan

Recently I read an absurd article in a major Australian newspaper in which the author states that autism should be removed from the NDIS. In essence, the author states that individuals with autism shouldn't be able to access funding, that autism shouldn't be classed as a disability and that disability funding should be given to those that really need it.


But before I get onto my open letter, I'll give you a little background on the NDIS.

The NDIS is the National Disability Insurance Scheme that is slowly rolling out Australia wide. The scheme has been in the trial stage in many parts of Australia over the last number of years and is gradually replacing other funding schemes Australia wide. In the last figures that were released about the participants that are currently in the scheme, it was stated that there are 142,000 individuals in the scheme. Of those 142,000 individuals, 29% of them are listed as being ASD. This is quite a large percentage and the scheme is yet to be rolled out nationally.

It would appear that the sheer number of individuals diagnosed with autism wanting to access the NDIS was grossly underestimated and the administrators are scrambling to "fix" the issue.

There have been several reports leaked to the media over the last month in regards to the NDIS changing the eligibility of Autistic individuals in being able to access the NDIS. If the proposed changes are put in place, it would mean that autistic individuals with a level 1 or level 2 diagnosis may find it much more difficult to access the scheme.

From a personal level, the NDIS has been instrumental for our family over the last three years in enabling L and O to access services such as multi-disciplinary therapy services and support services. Without the NDIS we would not have been able to pay for the level of support that both O and L have been receiving. And without the level of support that they have and still are both receiving, I doubt that they would be making the progress that they currently are.

I stumbled onto the most recent article quite by accident and as I was reading it, I could feel steam coming out of my ears. So here is my response to the author.

Dear Ms Shanahan,

For someone who has three adult children with health and subsequent disability issues, you are not showing any compassion towards others nor are you showing any knowledge about autism.

I am in a quandary as to which if your misguided, incorrect and downright offensive statements to address first.

There is no such thing as "mild autism." End of story. You either have autism or you don't. Mild autism is like saying someone is slightly pregnant. You either are or aren't. Autism presents differently from individual to individual. Yes the diagnosis of ASD is presented as a scale, but Autism itself is a spectrum. Individuals diagnosed with level 1 ASD still have struggles. The struggles may differ from those who have been diagnosed with level 3 ASD, but the struggles are still present.

We too sought and are receiving "practical help" for my children, as you put it, in the form of occupational therapy, speech therapy and child psychology sessions. Both of which are assisting my children to flourish both socially and in the education system. It's called early intervention therapy and the idea is that if a child receives therapy services early on in life, then they should not need as much support as adults. We are giving O and L the skills now that they will need as adults. We're setting them up to succeed as adults.

Both of my children were diagnosed in Western Australia and I can guarantee that we did NOT doctor shop for their diagnosis of ASD. We didn't choose to spend thousands of dollars on specialist appointments and assessments. It was a necessity and none of which we could claim through Medicare or through our private health fund. The assessment process took a good six months, three separate assessments and a lot of heartache. Times two. Why anyone would doctor shop to go through an assessment process amazes me.

And at no point during either of my children's assessment was "the parents level of stress," i.e. mine, taken into account. This does not form part of an ASD assessment. Period.

I have an idea Ms Shanahan, how about you sit in on an ASD assessment (from start to finish, so you may want to clear the next six months in your work schedule) just so that you can personally see what an assessment details. Keep in mind that most specialists are booked out for up to six months so you will be waiting in limbo until an appointment becomes available. You may also need to cancel plans with very short notice if an earlier appointment is made available. You will also need to factor in travel time, not all specialists are located in the same area so an hour appointment session may, in fact, take an entire day due to having to travel to and from the specialist.

You would have children like O and L go through a community education program instead of receiving vital funding and therapy. Pray, do tell, like what?????? And who will pay for such programs???? Who will run such programs???? Specialist sessions are not cheap. Where would community education programs gain the level of funding required to conduct intense therapy similar to early intervention programs for high numbers of children?

Without our amazing OTs and Speech therapists over the last three years, I highly doubt that my children would be making the progress that they are and continue to make. And without an ASD diagnosis, neither of my children would receive the support in school that they need.

You are incredibly fortunate that you received all the services that you did for your children. We receive very little financial assistance from the government. And many families that I have come to befriend through the therapy that my children attend, are in the same boat as my family. The small allowance that we receive, pays for fuel to and from therapy. I'd love assistance to pay for their various medications, very few of which are on the PBS list. We had to fight tooth and nail to receive the small amount of financial assistance that we currently receive.

Please educate yourself on autism before you next write an article on why Autism should be removed from the NDIS.

Yours Sincerely,
This very angry parent.