Thursday, November 26, 2015

New website!!

I have a new website!!  

I will not be posting any new articles here, and will be moving many of the articles from this blog to my new website.

You can follow along at

Wednesday, August 26, 2015


My fellow non-Autistic Parents to Autistic Children,

image: brick wall behind the
words from the paragraph to the left

We need to have a talk about something important. Words. We need to talk about the words we use and how we use them. We need to talk about the impact our words have on our Autistic children. We need to talk about how our words affect Autistic adults, because one day our kids will be adults too. 

Let's talk about words:

Words have strength.
We can use words to hide truths.

When we use our words to hide truths we enter dangerous territory. This is an argument used by many who want to say negative things about Autism- which is actually saying negative things about Autistic people. They say that we need to be “honest” and talk about the difficult things so parents don’t feel isolated and so they can get support. The problem here is that help and support are available without compromising the privacy and dignity of other people. The truth here is that parents who use this argument are mostly looking for sympathy and validation of their feelings of frustration, and are giving a different reason because they think it is more acceptable to others. They are hiding truth. 

Words have strength.
We can use words to create truths.

When a person feels something and they are not sure if it will be acceptable to others they are likely to keep it to themselves. Occasionally someone will be brave enough to speak that feeling to test if it will be acceptable. If they find sympathy for their thoughts and feelings they will repeat them. The more those thoughts and feelings are repeated, the more strength they gain. They are said to someone else who so far has not been willing to say them. That person realises someone else has said them, so they say them too. It goes on. Dialogues and scripts are formed and begin to grow and gather momentum. 

At the same time as hiding truths, the argument that “honesty” (negativity) is crucial to getting support helps to create truths. When parents prioritise telling their stories of hardship over maintaining the dignity of their Autistic children we see trends in conversations emerge.

There are now an easily predictable set of responses to every news story involving an Autistic person that is published. 

Autistic child bullied at school? They need to have social skills training so they don’t stand out as different. Autistic person goes missing? Must be in their own world and drawn to water. Person goes on a shooting spree? Bet they were Autistic to have been so socially isolated, weird and aggressive. Autistic person killed by their parent? Oh, poor parent, they must have had it so hard. 

We've all seen these conversations. They are hard to miss. 

By using negativity as the dominant theme in conversations about Autism a truth has been created. People are now scared of Autism. People are scared to know an Autistic person. People are scared to birth an Autistic child.

Words have strength.
Words give strength. 
We can use words to expose truths. 

It is true that people are scared of Autism. It is true that negative stories from parents of Autistic children, along with dramatic fundraising drives and alarmist awareness raising campaigns, have contributed to that fear. It is true that making people afraid of Autism erodes the rights of Autistic people and endangers their lives. 

It is possible to use our words to tell this story, just as it has been possible for people to create the truth of fear of Autism. In the same way as a parent speaking those first tentative words of negativity contributes to creating truths, we can use words to boldly expose the truth of damages caused and the need for change. 

When Autistic people speak up and say “that hurts me” we have an opportunity to give those words strength. We do this by repeating them. We can say, “Hey! That hurts Autistic people! I know, because I heard, or read, them say it.”

Words have strength.
When we make an effort to give words strength 
We can use words to uphold truths. 

Coming back to the words of Autistic people, and telling them to other people, is a way to uphold truth. When we want to know about Autism and we ask an Autistic person, visit a blog written by an Autistic person, read a book authored by an Autistic person we are upholding truths about Autism and the experience of Autistic people. 

When someone asks us about Autism and we send them to ask an Autistic person, visit a blog written by an Autistic person, read a book authored by an Autistic person we give strength to the words of truth and help new dialogues and scripts form, grow and gather momentum. 

And this is where using words to create truths is a good thing. We can work toward creating a new truth that once people were scared of Autism but now they aren’t. We help create the truth that Autistic people are recognised as the true experts on Autism instead of the professionals trying to get peoples money. 

I want my children to live in a world where that is truth.

Monday, July 13, 2015

the sensory friendly birthday party

image is a light blue curtain with some purple and white striped
and polka dotted triangular flags strung in front of it
and some white decorative party lights mixed in as well;
at the bottom of the image is a dark box with words in white
reading 'the sensory friendly birthday party'

Does anyone else find the Birthday Party hard? I do!! Some of my sensory challenges are around balloons, large groups of people and unpredictability. 

My MissG has similar challenges, but she loves balloons. This has made birthday parties hard for her whole life though. Party games are awful for her. Large groups of excited children are fun and completely overwhelming at the same time. 

MissG is Autistic, but Autistic children are not the only ones who can have sensory challenges. As many as one in twenty kids are believed to have "Sensory Processing Disorders" in Australia. The little ones who cover their ears and cry when a balloon pops (this was me.... still is me....) could very well be some of them. The kids who hide in a corner after half an hour and just want to play by themselves could be some of them too. 

Although MissG finds parties hard she still loves them, being the social person she is, and she wants to have her own party each year. In the past I have tried to give her a party that mimics the "normal" birthday party experience, because she has wanted to have games and lots of friends over, and the whole shebang. This has meant that I have spent most of the party at her side, supporting her back from the brink of meltdown after meltdown. It is so hard for her. 

During the past 12 months something new has been happening for MissG around meltdowns. She has started to feel embarrassed by her own meltdowns, especially when people outside her immediate family witness them. Having noticed this, I have become unwilling to put her in situations where she is guaranteed to have a meltdown. I know that as she gets older her tolerances will shift, and she will be able to do some of the things that she can't do now with out melting down. We will work on pushing boundaries and learning tolerances as she grows older and gains skills. 

For now though, so that MissG can have a birthday party she enjoys without experiencing embarrassment, I decided to take a different approach. We did almost nothing in the way a "normal" birthday party would. 
We had no set schedule. 
We had no party games.
We had no loud music. 
We had only 2 guests. 
We kept it short (2 hours was plenty of time).
There were no surprises. MissG chose everything that was going to happen from a set of options I provided her, she saw everything before the party and helped set everything up. 
Every activity had a sensory purpose for MissG. 
All the activities were set up for the whole party at our large dining table, so everyone shared space but could move to a defined section of that space if they needed to. 
Nothing was cleaned up along the way. 
It was more like a "play date" with birthday cake than a birthday party. 
And it was perfect for MissG. 

image: a set of 5 pictures titled 'party activities with a sensory purpose'; activities are explained in the body of text below

We had 5 activities, each chosen because MissG likes them. Drawing and colouring in are relaxing for her, play dough and juggling balls (or stress balls, thinking putty and other similar things) provide an opportunity for stress release as they are squished and manipulated, blowing up balloons and blowing bubbles are good for stress release, the bubbles are just pretty and fun, the little puzzles were bought to fit in with the mermaid theme and for a simple fun game and the small spinning tops are excellent spinny stimmy goodness for anyone!! 

two pictures: on the left a chocolate cake with a 'happy birthday' candle on top
and on the right MissG, smiling slightly and her cake with candles lit
Birthday cake time was approached sensitively. The cake was chosen by MissG, to her exact specifications... a double layer chocolate cake with chocolate icing and jam in the middle. She helped assemble it and placed the candle on top. We had the cake early on in the party, so that it was not something waiting to happen that could cause stress. MissG lit her own candles. I asked if she wanted us to sing to her, and I asked if she wanted us to "hip hip hooray" for her. She blew out the candles, and went back to playing. 

Hunger can be a sensory trigger, so I made sure there was food available during the whole party. MissG chose the food she would like to have, so there were no surprises there either and I knew she would enjoy anything offered.

This party was no more difficult to organise than any other party we've had for any of our kids. It was quiet and simple. MissG enjoyed herself, it was her first meltdown free birthday party, and she had energy and coping skills left over afterward to make a trip to the shops to make a purchase with money she was given for her birthday. Win!

Today, when I asked MissG about her party she said "I had a really fun time" and then instructed me to put it on the blog! So, there you go, with MissG's approval- her sensory friendly birthday party. 

Monday, June 29, 2015

Continuing the discussion on inclusion in the classroom

Inclusion is a bit of a buzz word, I guess. It is thrown around to assure everyone that schools are supportive and understanding of students with extra support needs. But the reality of attending school as a Neurodivergent person is a bit more complicated than being told you are included.

A persons physical presence in an environment is not actually an indication that they are included in a meaningful way. It is possible for a persons presence in an environment to be treated in such a tokenistic way that being “included” actually makes them more of a victim, and no one notices because it is called “inclusion” and words like “positive” and “support” are used.

Let’s talk about school again for a bit.
image: purple box over a light grey shadow,
with the words "Is that real inclusion?"

The way the school system is set up relies on compliance to work.

Everything is on a schedule, even eating, drinking and bathroom use.

Read for 15 mins, spelling for 15 mins, write for 30 mins. Be quiet, concentrate, keep up. If you don’t, you are “falling behind”. If the pace set is too slow, too bad. Even unstructured time has a structure….. sit here to eat, walk in lines, no running on concrete, only play on the equipment on Tuesday, etc. etc. etc.

If you are a person who finds it difficult or undesirable to comply it is likely that you will do things that will be labelled as “problems” or “defiant” or “troublesome”. You are likely to be subject to a behaviour management technique known as “Positive Behaviour Support”.

PBS is there to encourage compliance.

The teachers track and log “problem behaviours”. They look for patterns, then devise solutions for the kids to comply with. They do sometimes change the environment or schedule (this is when it can work well), by my experience is usually that they “teach” the kids a strategy.

There is a strong emphasis on rewards, which sounds good….. unless what happens in reality is this: The high achieving, already compliant kids get lots of rewards, the kids who draw attention to themselves with “problem behaviour” get lots of rewards for doing little things that everyone else is just expected to do with no reward, and the kids who are “average” or manage to hold it together at school and achieve surface compliance get overlooked.

How does this impact students? Well, high achievers love it, unless they are singled out by other kids and labelled as ‘teachers pets’ or ‘favourites’ and experience shaming or bullying, or unless they just prefer to not be the centre of attention. The “problem behaviour kids” get lots of attention and rewards, leaving other kids (because kids are smart) realising the “problem kids” are being coerced with rewards to do very basic stuff - this often leads to resentment and frustration (eg “Mrs Sutton, I’ve been finishing my spelling test properly every single week, and I find them really hard, but I’ve *never* had a reward for it like {child} does” and “Mrs Sutton, can I please have a turn on the iPad this week, I haven’t had one yet this term because {child} always gets them in free time for not being noisy in maths”- both said to me when working as a relief teacher). The kids in the middle somewhere ….. they start to think that it doesn’t matter what they do they will never be good enough or get noticed. They are probably right.

There are other issues that contribute to the creating of victims within a system of “inclusion”.

If you ask for environmental accommodations, the school is limited in what they can do because of the availability/willingness of staff to supervise and the physical constraints of the existing buildings.

Teachers are not trained to support children with a variety of needs, learning styles, challenges, disabilities, or even really at different stages on the learning continuum. By this I don’t mean that all this is not mentioned at Uni or in classrooms. I mean that it is mentioned…. given lip service to… but ultimately teachers are neither properly trained or properly supported to do these things well.

The assessment system still requires teachers to measure against a standard, so they teach to that standard. Teaching to that standard requires a certain amount of time and paperwork, leaving the teacher tired, stretched beyond one persons mental, emotional and physical resources, and relying on compliance from the kids to get through it all.

So, back to PBS. Evidence based it may be…. just like ABA….. but I’m not convinced it is a good approach in schools because unless the school staff are unusual they are still applying a one solution fits all style of thinking to it. I often say to people…. “yes, ABA works. It does what it says it will do. It eliminates unwanted behaviours, but at what cost? And who gets to decide what behaviours are unwanted?”

PBS identifies unwanted behaviours, and looks at when they are occurring, and tries to look at why. Problem is, what if, for example, the behaviour identified is a coping behaviour? What if it is lashing out at kids in the playground, when usually the child is quiet and “well behaved” in class? The teachers might see that and think because it occurs in the playground it is being caused by something in the playground (reasonably logical assumption for a lot of kids). But what if the real cause is in the classroom and the child involved has been holding it together in the classroom because the rule there is ‘be quiet and concentrate on your work’? The teachers might be insisting on the wrong change. Then when that doesn’t work they slowly but surely revert to strategies like shaming and punishment without looking further. The child becomes overwhelmed then and shuts down. The behaviour stops. The PBS is deemed effective. The child is traumatised, but now there is no behaviour to track, so no one notices or cares. Backs are patted and outcomes are achieved. Inclusion and mainstreaming are deemed successful. Celebrations all around, but what really happened was a child was broken.

Then, because it “worked” for some kids, when it doesn’t work for others (remember the “problem behaviour kids”?) they are labelled as “just disruptive” and the goals for them become condescending things like “doesn’t disrupt others learning”. Their presence is tolerated, but the teachers pretty much give up on them and just want them to not interfere. These are the kids who later on it will be recognised “slipped through the cracks”. We aren’t told the system failed them, because admitting that would mean we’d have to look at the system, and besides…. it worked for everyone else, didn’t it?

The other thing PBS fails to take into account is effort. Teachers assume high achievement equals high effort and low achievement equals low effort. We know this not to be true. In my family I have one son who barely tries and archives top marks, and one who tries so hard he exhausts himself, but still an’t “keep up” with his age peers. PBS requires effort from the kids, but does not acknowledge that high effort can still result in not meeting goals set for you by other people who do not understand the real problem.

One thing I have found over the years is that consistently, when I presented my document about my son to the new years teacher/s, the ones who choose to implement my suggestions have without fail commented to me at some stage in the year that the whole class was benefitting from the changes they made for L. Simple strategies, like those mentioned here, can prevent the “need” for behaviour modification programs.

I also want to say that my Autistic kids aren’t the only ones I feel are failed by PBS. 9 yr old K is happy at school, involved in many extra creative and performing arts activities, and achieving well academically. Last week she said to me “I just don’t get chosen for awards, Mum. I try and try, and I think I’m doing well, but the teachers don’t notice”. I for one would love to see some research done on how kids find PBS, as it is done to them.

I think that is probably the key to why I object to it, actually. It is done *to* the kids and for the benefit of the teachers. Learning should not be done to someone. Teachers are seen as gatekeepers, not partners. If the student does’t do it the teachers way they are “wrong”. The teacher is not seen as having an obligation to figure out how to do it differently to support the child, the child is expected to respond to being shown how to do it the teachers way, then become “successful” using the strategies imposed on them.

In my sons years in school he had one teacher who really understood that. My son flourished in that class. He loved it. It was the best year ever for him, and every year at school after that was a slide further into frustration until we pulled him out last year in favour of homeschooling.

The rub for me is I am a big supporter of both public education and inclusion, but I cannot wait for things to change while my kids attend. It is not safe for them. They are at home, and I continue to advocate for change while people look at me incredulously because "why should you care? your Autistic kids aren't even at school!!" 

The fact is, I care because all children miss out when we fail to approach education from a mindset of inclusion. I have non-Autistic children attending school (because they want to). I want them to be able to attend a school that accepts their siblings and supports them well. That is not going to happen in the next 10 years. The system as it stands is too broken.

For inclusion to be real, and successful, it requires measures to be put in place in the planning phase. Those things need to be physical, structural, environmental, and taken into account when drawing up plans for buildings. They need consider the social, emotional and academic needs of students and be taught to teachers while they are training. They need to be included in policy document and curriculum. 

While inclusion continues to be an afterthought to satisfy policy makers and quiet those who celebrate diversity but are seen as dissenters, the education system will remain a dangerous place for my Autistic children to be. But I will keep speaking out in support of real inclusion and real acceptance of diversity.