Bringing Autistic People onto the Board of Amaze (APAC 2017 presentation)

This was a co-presentation. Jane’s part of the talk, relating to logistics, has not been included.

Today Jane and I are going to talk to you about the process that Amaze followed to bring autistic people onto the Amaze Board, and our personal experiences of that journey. We, and Amaze, believe that Autistic people should have key decision-making roles in the organisations that support them, and we want to share what we have learned about how to make this happen effectively.

I will begin by giving some brief background information about Amaze and then Jane will talk about the process that the Amaze Board went through when introducing Autistic people onto the Board and the Board Committees. Finally, I will conclude our presentation with some observations from my experience as an Autistic Board Director of AMAZE and some personal perspectives on accessibility.

[SLIDE Who is Amaze]

Who is Amaze

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Amaze, Sub-heading: Who is Amaze? Body of text (in bulllet point format): Peak body for Autistic people, their families and supporters, in Victoria; Build understanding and acceptance; Influencing positive systemic change through advice to governments and media exposure; Build capacity in the wider community.

AMAZE is the peak body in Victoria for autistic people, their families and carers. We are not a service provider.  We want every autistic person to have the opportunity to exercise their own choice to participate meaningfully in, and make a valued contribution to, our society. We build understanding, engagement and acceptance of autism. We develop community capacity by working with others to help them value and support autistic people and their families.

(Hand over to Jane)

Thank you Jane

I was first introduced to AMAZE like many Victorians are, to access funding for my children. I then became a member of AMAZE and followed AMAZE on social media.

After sometime, I became known to Amaze because I expressed my opinions on various topics on their social media posts. Amaze was interested in my opinions as an Autistic person.

It was the strategic plan that made me want to be further involved with AMAZE. I was excited that Amaze wanted to centre our voices as Autistic people. The potential for progressive socio-political change, as outlined in the strategic plan, was promising because Amaze has a lot of influence.

So after a couple of meetings, I had been offered and accepted the casual vacancy of Board Director with Amaze and was elected at the end of last year for another 3 years.

That is not the end of the story. It’s just the beginning. It is challenging to be an autistic board member for an organisation that aims to support us. There are lots of reasons for this.

[SLIDE Ableist language]

Ableist Language

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Ableist Language, Sub-heading: Impact Body of text: a) is part of an entire system of ableism, and doesn’t exist simply by itself, b) signifies how deeply ableist our societies and cultures are by how common and accepted ableism is in language, c) reinforces and perpetuates ableist social norms that normalize violence and abuse against disabled people, d) actively creates less safe spaces by re-traumatizing disabled people, e) uses ableism to perpetuate other forms of oppression, – from Autistic Hoya’s Violence in Language: Circling back to Linguistic Ableism.

First, staff and other board directors were very committed to ensuring my needs were being met but those same board directors were also not autistic and generally less sensitive to everyday ableism and its detrimental impact on us. I and the other Autistic Board Observers identified, very early on, that some proactive education was required to help the non-autistic directors, and others working in Amaze, to become more aware of how their choice of words could unintentionally offend or harm us as autistic people. Jane and I gave presentations to the Board and to the staff of Amaze about what constitutes ableist language, it’s impact and how to avoid it. This was very helpful.

Another area that I found challenging was in adjusting to being a Board Director having not had prior experience in that area. During my first few Board meetings, I was very anxious and tried to guess when and what to say based on what I thought might be expected of me. I was trying to do what we in the Autistic community refer to as ‘passing’.

[SLIDE Passing]

Passing

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Passing, Sub-heading: Definition, Body of text: Passing is the ability of a person to be regarded as a member of an identity group or category different from their own, which may include racial identity, ethnicity, caste, social class, sexual orientation, gender, religion, age and/or disability status – from Wikipedia

Although, I wasn’t trying to pass for neurotypical specifically, because I was there for my Autistic identity, the culturally-expected behaviour of a professional fits that of elite neurotypical – like behaviour (something that will hopefully change). Passing is a survival strategy that is hard to stop using due to habit. It is also anxiety-provoking. I was in awe of the other Board directors who all had very impressive qualifications and experience but I have what is called ‘lived experience’ and it really is necessary to have that in all facets of the organisation including the Board.

Any kind of organisation that attempts to help people can also inadvertently harm people. Lived experience means that you have the added advantage of directly feeling the emotional, physical and social impact of any words and actions that are incorrectly assumed to be supportive, so you know if something is actually harmful rather than helpful.

[SLIDE Lived experience]

Lived Experience

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Lived Experience, Sub-heading: Advantages, Body of text (in bulllet point format): Feel the impact of words and actions that may be incorrectly assumed to be supportive, Access to discussions within the autistic community that are different to those that non-autistic people have about us, which should be considered in decision-making, Creative solutions.

It’s not just our individual innate feeling that is useful. If you are a member of the autistic community, and for me this is via social media, you are involved in discussions about disability rights, ableism, what supports and research are helpful and what’s harmful. These discussions often vary greatly from the discussions that non-autistic people are having about us. Our collective innate feelings lead us to the most relevant, helpful ideas. Only autistic people can bring this lived experience to the Board and it is for this reason that our contributions greatly improve the quality of Board discussion and, as a direct result, Board decisions.

Support for autistic people on Boards must be established from the beginning, but it’s important to be aware that support needs vary between autistic people, are dependent on context and may change over time.

I remember my first support meeting with Jane. Jane had suggested that we catch up for coffee on a regular basis to debrief. I thought that was a great idea. Jane asked where I would like to meet but me not being a very social person nor aware of social places, preferred for her to choose. It became obvious from that first meeting that I was not a ‘meet for coffee’ kind of person. I was so distracted by the noise and movement of café patrons and staff that I couldn’t reflect on my experiences or make conversation in even the most basic form. From that day, we established that email contact was better and only for when I needed it because that is what worked for me best and therefore my preference.

If I was to anticipate where your processes and environments may not be accessible to Autistic people, it would cover several main areas that I will speak briefly about now:

[SLIDE The sensory environment]

Accessibility

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Accessibility, Sub-heading: Sensory environment considerations, Body of text (in bulllet point format): Background noise and activity, Distractions / Interruptions, Lighting, Personal space, Breaks to move or eat or stim etc.

The sensory environment of the Amaze meeting room was not ideally accessible. The main thing that I remember was that there was not enough room around the table for everyone and there was constant low-level background noise. I feel very uncomfortable sitting too close to people and find it hard sitting at an awkward angle away from the presentation screen (because I rely heavily on visuals). This impacted on my ability to concentrate on and contribute to Board meetings. After identifying this as an accessibility issue, an alternative room was sourced with input from the Board Observers and I, and it has made a substantial difference for us.

[SLIDE The social environment]

Social Environment

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Accessibility, Sub-heading: Social environment considerations, Body of text (in bulllet point format): Be flexible with social etiquette where possible and provide clear instruction about what is expected, Keep social demands to a minimum if needed, Provide support with social conversations if needed, Use preferred communication methods for socialising and communicating generally

The social environment. Socialising adds an extra level of difficulty so supports should be provided around that. Making sure that we can hear conversation is important because background noise makes it very difficult to isolate and hear speech if we have auditory processing difficulties. I often find that I forget people (a facial recognition issue, which is not uncommon among Autistic people) and forget details about people lives and social conventions generally. It can be helpful if I am re-introduced to people, in a casual way, as if you have forgotten that you ever introduced them to me in the first place.

[SLIDE New experiences]

New experiences

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Accessibility, Sub-heading: New experiences, Body of text (in bulllet point format): Anxiety greater for new experiences, May require more assistance then expected when doing things for the first time, Scripts, examples, visuals, In-person support if helpful

New experiences. I find doing things for the first time anxiety-provoking. A new experience could be hosting a new event (which also involves a social component) or taking on a new project. I felt that I should volunteer to do something one day, so I offered to implement an evaluative survey without thinking it about it first. I had never done anything like it before and really didn’t know how to begin. Fortunately, an intuitive Board director went through the software with me in person, provided me with contacts when they couldn’t help and gave advice and feedback on how to present the data. It is important that we are not overly-nurtured generally, as that could be patronising, but for new things it can be invaluable to have extra instruction, in-person support and even example scripts (such as in the case of hosting events).

[SLIDE The emotional environment and ableism]

Ableism

Purple poly-sided shape protruding from top right corner of the slide. Yellow poly-sided shape of smaller size protruding from the bottom left corner of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: Heading: Accessibility, Sub-heading: Emotions and ableism, Body of text (in bulllet point format): Trigger warnings and sensitivity, Ensure all directors and staff understand disability rights and ableism to avoid unintentional (or otherwise) discrimination, Pair with a sensitive, confident non-autistic director / mentorship for support

The emotional environment and ableism. As Autistic people, we are used to people arguing with us in person or on social media that our support needs, including for acceptance, are irrelevant, unnecessary or too hard and that we are being too sensitive or too demanding. Debate about issues that impact us can therefore be challenging. We’ve refined our arguments through practise but constantly having to argue, advocate and debate for our lives to be valued and supported, combined with past abuse or trauma, can become triggering after some time. A lot of unintentional ableism and conflict around sensitive topics could be avoided if non-autistic board directors had a good understanding of disability rights and autistic culture and I would strongly recommend considering this as a preferred criteria in your position descriptions when recruiting new directors and staff and/ or making it an induction and training priority.

Having a trusted and sensitive non-autistic Board director to provide support when bringing up sensitive issues is also very helpful. I don’t want to always have to be the one to explain everything when something is problematic because I don’t want to be associated with “problems”. I’m also not really that great at explaining things without a prepared script (the right words aren’t easy to think of quickly) so support during a meeting with explaining important concepts can also be helpful.

[SLIDE Quote]

Quote

Light green poly-sided shape protruding from top right corner of the slide. orange poly-sided shape  protruding from the bottom right of the slide. Amaze logo in bottom right corner (around the first part of the word ‘amaze’ is a tiny blue lop-sided hexagon, under the second part of the word ‘amaze’ in very small print are the words ‘Shaping the Future for Autism’. Text description: “Autistic people are leaders (too).”

If I was to sum up my experiences at Amaze for the past 18 months, it would be by listing a range of intense emotions: excitement, fear, disappointment, anger, confusion, pride and hope. I do have high hopes for what Amaze is capable of achieving and I want other autistic people to join me on Amaze’s board and the board of other autism and disability organisations so that we can lead the change for our futures.

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I’m a Board Director!

Yes, it’s true.

I’m on the Board of Governance of AMAZE.

And I wonder if I am experiencing internalised ableism or imposter syndrome or both because part of me thinks it’s funny. Although, I take the position very seriously and it fills me with trepidation (because I now represent autistic people on the board of an autism organisation) part of me finds the appointment of ME to the position amusing.

Don’t misunderstand me, I am very knowledgeable about autism and being autistic (just check out my old blog posts and follow me on twitter and you’ll see that disability and social justice are my special interests) but I still feel like a child on the inside (that’s the internalised ableism bit).

Although, my overall skills have improved due to practice and life experience, I still have the same essence of me that feels child-like. I still daydream, I giggle at my sons jokes and unexpected observations, I like games (board games, kicking a football or shooting hoops) and watching our pet chickens roam around our backyard simply being chickens. Sometimes, I still jump off a swing or climb an obstacle with my nieces and nephews, at a park, in fact often I do. When I visit my nan, I want to lie on the floor instead of sit in the chair while she talks and on long car trips I put my feet up on the front passenger dashboard. I forget that I’m forty and that’s unexpected behaviour at forty although, more-and-more, I am aware of what’s expected but I just disregard it because I’d much rather do what I like. I think to refer to those characteristics as child-like is prejudiced. It’s not child-like, it’s being carefree and my sense of what’s comfortable and fun is different and uncomplicated. I am not a child, I am an adult who doesn’t conform to adult culture.

Then, there is the fact that I need more guidance to accomplish tasks successfully. A perfect example is how I almost always get lost (with the exception of routes I take daily because they can be completed without conscious thought). I watched the movie ‘Finding Dory’ with my children, a few days ago, after reading this piece on how the movie covered the themes of disability surprisingly well. After watching it, I realised that Dory and I, although having different disabilities, had a similar need for a lot of support with following and remembering directions. Children need more help than adults usually, so there is the risk that I could be thought of as child-like (which would be ableist) because it is not acknowledging the fact that adults require supports too. Disabled adults need more support in an environment that does not follow the guidelines of Universal Design.

After writing this (which has served as self -exploration), I realise that laughing in disbelief, over my appointment to a Board Director position, is actually very ableist and when you are ableist against yourself (internalised ableism) it automatically has flow on effects to others. I apologize for that.

So now it’s time to redefine what it means to be a Board Director and all those other titles that have long been held by primarily privileged non-disabled adults so that people like me, don’t think that positions like those, are not for people like us and that they do accommodate our needs.

 

Disability and Australian Politics

I was shaking from the cold. Trish* told me to put my jacket on and I wondered if she was trying to get me to cover up my bright green shirt and logo and the oversized ‘Vote Greens’ badge but she was twice my age and appeared to suffer worse from the cold than I did and was probably just looking out for me. She told me that she likes to “mother” people. As I handed out flyers for the ‘Australian Greens Party’ she handed out flyers for her political party of choice and chatted to me about her family and the dramas in their campaign.

The whole situation amused me. This was the first time I had ever handed out flyers at an election and the experience was a unique one. Here I was standing next to and chatting to a seasoned ‘Liberal Party’ (a conservative party in Australia) supporter when I would never in my life vote Liberal.

Usually, I was the one dodging the people handing out flyers, avoiding eye-contact with the party volunteers and saying “No thanks” and now I strongly felt the discomfort of others approaching as their eyes darted side-to-side for the quickest and least confrontational route to the end of the queue. I was feeling equally uncomfortable as a result and not sure when to make eye contact either, if at all, but they say some people are undecided when they arrive and they are not likely to vote Green if they don’t have the flyer in their hand while making the decision. I wish they had signs on their foreheads saying ‘undecided voter’. I just tried to be as friendly as possible without exposing my weak conversational skills.

Earlier that morning, when I had been standing alone, I was approached by an anxious looking woman who told me that it was not the Government that was running the country but that it was her family that ruled the world. While she talked she kept asking if I understood. I nodded my head politely and tried to understand what she was saying but her conversation was erratic and I have auditory processing difficulties. She was talking a lot and I didn’t know if she would stop if I couldn’t find a way to end it. She mentioned something about Judaism and said that religion ruled the world. I thought about mentioning that I wasn’t religious but I wasn’t sure if that was the right approach. I said “What can I do for you?” Eventually, she mentioned how literacy has changed the world for the better and how important health and education were. Bingo! She’s right. I said “I agree that health and education are very important and see here on our flyer where we make it a priority”. She smiled at me for the first time because that was the message that she was so desperate to impart. I thanked her for talking to me about it and wished her on her way.

After being stuck in some glare from the sun (I have sensory processing difficulties), I had asked to swap spots with Cath (the other Greens volunteer) and I had found a safety net in Trish who was on my left. Next to me on the right were two extreme right-wing party volunteers. I couldn’t bring myself to make eye- contact with them because of the hate and division they create in our communities. One of their right-wing signs said ‘Multi-ethnic. One culture’ and something about making ‘Australia more Australian’. I wasn’t listening to what they were saying because I didn’t want to feel sad right then but I had no plans to move. They were the first to hand out flyers to voters coming from one of the carparks and I wanted to follow that up with a Greens flyer for those people like me who get upset by the cruelty and racism of right-wing politics. It’s ok, I’m here and I don’t hate. At one point, I overheard one of the right-wing volunteers say to the other “People think our party is racist but we have people from different nationalities in it” as if the presence of people of different nationalities means that it must not be racist.

Trish had greeted an unhappy looking guy in a flannel shirt with “You don’t look very impressed to vote today” in a joking manner and he was ready to let us have it.

“Well, none of the parties are any good!” he said “I’m an environmentalist but the Greens keep contradicting themselves on that (I made an assumption that he was a hunter/ fisher kind of guy) and the Liberals are only interested in putting money in the pockets of the rich.”

He turned to the right-wing volunteers beside me and said “You are more like it! At least you are looking out for Australians!” Trish tried to settle him down by talking about democracy generally but I strategically spotted some people in the distance and moved away to hand out flyers to them. When I came back Trish apologized to me and said “I’m sometimes too friendly and I didn’t mean for that to happen”. I told her it was fine. I liked her friendliness, it prevented me from having to stand alone wondering when to make eye contact with people. Next to her, she could talk and I would just hand out my flyer as if it was a second thought to passers-by, which seemed much less confronting for me and them.

At one point, Trish disappointed me. A women was pushing the wheelchair of a young man who appeared to be quadriplegic. She rejected all of our flyers. Trish said “Probably a donkey vote.” She didn’t say that about anyone else. It seemed like she made an assumption based on the disabled man. I acted as though I didn’t understand what she meant although deep down I suspected she had wanted me to laugh about it or accept the statement as likely, which would make it an ableist joke at worst and an ableist assumption at least. People who are quadriplegic can vote too.

Disability rights is one of the reasons I decided to hand out flyers for ‘The Greens’ today. I’m autistic, disabled and proud. Here’s what the Greens have to say about disability: Parties respond to **ACDA election platform

*Trish: Not her real name.

**ACDA: Australian Cross Disability Alliance

Talking to kids in the classroom about Autism

I had an awesome day today. My son Damian has been very anxious attending school recently for a number of reasons, which we are seeking appropriate help for. It occurred to me that it might help him to feel more understood by his classmates if I had a chat to them during class about Autism, diversity, difference and disability.

Initially, Damian was concerned that I would be telling the class all about him. He is very conscious (and rightly so) about people talking about his vulnerabilities. So I asked Damian if I could talk about my Autism (I am Autistic) and Autism generally and then mention him briefly at the end. He was much more keen on that idea. I let Damian read what I was going to talk about and he was very happy for the talk to go ahead. I will paste the talk below (and the kids’ answers and questions in brackets – at least the ones I can remember).

When the day of the talk finally came, Damian was as excited as I was to be talking about my favourite topic, only his reason for being excited was because I was his mum (he is only 7 years old; his classmates are 8 years old) and I was going to be talking about how being different was cool.

After the talk finished, Damian told me he loved it. He had sat wide-eyed at my feet and completely focused for the entire talk and this is a boy who was also recently diagnosed with ADHD. When I asked if he thought the other kids had liked the talk too he said that they might have been more interested in the toys and books* that I shared around.

I think the talk was well-received by both the teacher and the kids in the classroom. There was lots of interest in what I had to say and I was very interested in what they had to say too. There were some great discussions. The kids of tomorrow are going to rock this world!

Good morning everyone,

Some of you may already know me but for those of you who don’t, I am Damian’s mum. I have come to visit you today to talk to you about being different especially one type of difference called Autism. Can you say the word ‘Autism’ with me? Saying it out loud will help you remember it. Try it now. 1, 2, 3, “Autism”.

Before I start talking to you about difference, I am going to hand around some books about being different and you can flip through the pages quietly while I am talking and look at the pictures. I will leave the books in the classroom for the week, if you want to read the books but for now I just want you to look at the pictures and share the books around to others in your class.

A word some people use to mean difference is ‘diversity’. Can you say it with me? 1, 2, 3, “Diversity”. What does that word mean again? Can anyone tell me? (No-one could guess except Damian who said “Black people who aren’t treated well by white people!” I said that skin colour was one example of diversity and gave a few more examples. Some of the books I had shared around had themes of racism in them.)

Diversity, which means being different, makes the world a better place. Imagine if everyone was exactly like you, looked like you, liked the same things as you, wanted to borrow the same library books as you and brought the same things to ‘show and tell’ every week. Imagine how boring and even frustrating it would be.

In this world, there are lots of different people working and playing in different ways to make things more interesting, fun and better for all of us. We are pretty lucky that there are so many different, interesting and exciting people and things for us to do in the world.

You will notice in some of those books that some differences are differences that we can see. Some of the people in those books wear glasses like me, some have guide dogs, some use wheelchairs to get around, some people have brown skin and some people have white skin, some people are young and some people are old, some people live in different houses and some people wear different clothes.

But some differences cannot be seen. Can anyone guess what difference I might have that you cannot see? (One child guessed different blood-type, which I told him was a great guess because you can’t see blood- type. Another few children guessed other things that could be seen. Finally, I let my son answer because he already knew the answer.) That’s right, I am Autistic.

Even though I am different because I am Autistic, I am also a lot like you and I was even more like you when I was younger. I used to like playing with friends, swimming in our own swimming pool, climbing trees, riding bikes and reading books. Sometimes I was happy like on my birthday and when I played with my younger cousins and sometimes I was sad like when other kids teased me or I fell over.

In fact, everyone in this room has some things the same as each one of us and other things that are different.

But because I am Autistic, I am even more different to you in some ways. Kids and adults who are Autistic may sometimes do or say things that are a lot different to most other people their age because our brains work differently sometimes. Soon I am going to read you a book that will explain how our brains work and think differently.

Some things about Autism are really great and those things are different for each Autistic person. I like that Autism helps me to say and spell lots of really big words like ‘Autism’ and ‘Diversity’. Autism also helped me to be great at maths at school, whereas other Autistic kids found maths hard but found that Autism helped them with art or music or writing or certain sports.

People with Autism can sometimes be just as different to each other as you are from each other but there are some things we have in common and this is explained in this book ‘Inside Asperger’s Looking Out’.

‘Asperger’s’ is just another word people used to mean Autism. People don’t use the word ‘Asperger’s’ much anymore so I am just going to use the word ‘Autism’ instead of ‘Asperger’s’, wherever it is written in the book.

While I read the book to you, I’d like you to put your books upside down on your lap or on the floor and pass around these squishy toys to squeeze and stretch gently while I read. Kids and adults who are Autistic often use toys like these to help keep them calm when things are getting difficult for them because sometimes it can be hard being different. Many other people find the squishy toys relaxing too.

(I read the book but skipped a few pages because it’s very long. I asked the kids about what the ‘senses’ were before reading the pages about how our senses can be different and one very smart girl answered the question better than I could. I also paused on other pages to clarify.)

Does anyone have any questions about the book? (A couple of great questions were asked like “How do you know if you have Autism?” and “Where does Autism come from?” Of course, I answered relating it to my own experience.)

You know, I am not the only one in this room that is Autistic. Autism is something that you are born with that is passed down from your parents or grandparents or other relatives. So Damian, who is my son, is also Autistic. You might notice that sometimes he finds things easy that you don’t and sometimes he finds things harder than you. It is important for anyone who is different to be understood and treated well especially when they are finding things hard.

Our school classrooms and playgrounds can sometimes be difficult for kids who are different because they are not made in ways that suit them best. They often have too much noise for us, too many bright lights or too much movement and this can stress us out. It is called ‘disability’ when our classrooms, where we work and live and the rest of the world is not built to support our different abilities.

Can you say the word ‘disability’ with me? 1, 2, 3 “Disability”. Our buildings and the way we do things is built for most people but not all of us and we need people to make our schools and lives easier by changing things to make it easier for all of us. It’s only fair.

Can you think of ways we could change the classroom or the playground to make things better for kids with disabilities like Autism or any other disabilities that you can think of, so that it is better for all of us? (There were some great answers to this question. Some about not teasing or bullying kids who are different and some about having quiet areas that kids can go to.)

Now you can understand why some people and kids look or act differently and you can just be cool about it. It’s cool, it’s Ok to be different and we need different people in our lives and in the world and we need to remember that even though Autistic kids can be different they are also kids just like you who want to play, learn and be treated well.

(Then the classroom teacher asked the class if they found squeezing the squishy toys helpful for listening. Many of the kids did. The teacher said that he finds that if he draws patterns while listening he finds it helpful to listen and learn and he asked the children if anything helped them to learn better. A couple of kids answered.)

*These were books that I bought for my boys to read at home to increase the diversity of their bookshelves. I have reviewed many of them in previous blog posts here and here.

More diverse books for kids

If you are passionate about diversity and you have children, you might be interested in these children’s books. I have written about other diverse books that I bought for my children here.

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A photo of the front cover of the book ‘Ugly’ by Robert Hoge. Background is light-greenish yellow. A rough sketch (as if done in black texta on white background) of a young man’s face. He has thick ears, short straight black scruffy-looking hair, big bushy eyebrows and small black eyes set wide apart. There is an uneven line drawn down the middle of his face (suggesting an uneven bone structure) passing through a wide asymmetrical-shaped nose. The word ‘Ugly’ is at the bottom of the page, slightly to the left, obscuring the chin of the sketched face. The word appears written with crooked block letters and looks as if it is coloured-in poorly with red pen.

It is a true story written for children probably from around ages 8 and up, although I found this book captivating to read myself. The blurb at the accurately refers to the book as “engaging” for readers but it was a bit disappointing to see it also refer to it as inspiring given that ‘inspiration porn’ is considered problematic by many people with disabilities. Regardless, this book gives some great general and specific life lessons about the stigma of disability, the unnecessary and cruel nature of teasing, about how dedication and practise can lead to success and about believing in the competence of people with disabilities. A must read!

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Photo of the front cover of the book ‘I Love Being My Own Autistic Self!’ by London Bryce. Background  colours are bold yellow, black and red. A blue cartoon character is situated near the centre of the red part of the background, from the chest up. The character has no hair, thin long dark blue eyebrows, thin closed dark blue eyes, small almost egg-shaped dark blue nose and an open wide mouth in the shape of a smile with two white bottom front teeth slightly visible. There is a speech bubble leading to the characters mouth (which is white fading to grey at the edges with black print) with the words ‘I Love Being My Own Autistic Self!’ in black. Across the bottom of the front page on a light grey background are the words ‘A thAutoons Book by Landon Bryce’.

This book is written for autistic children to help them make sense of their own identity and the contradictory messages they receive about autism from others. It is unique from other children’s books about autism in that it uses identity-first language, the preferred language of many autistic people.

This book is written from the perspective of a fictional autistic boy called Vector who introduces us to other characters in the story such as his autistic friends, neurotypical friends and family. All the characters appear as simple cartoon characters.

Vector explains the differing thoughts and feelings about autism of himself and each of the characters, including what Vector considers to be the “good” and “bad” parts of his own autism.

I actually scribbled out the words “good” and “bad” because it didn’t sit well with me and instead I wrote ‘strengths’ and ‘vulnerabilities’ above where those words are. Everybody has there own preferred language and I’ve never been a big fan of ‘good’ and ‘bad’.

What is best about this book is that it puts Vector’s thoughts and feelings about others’ perspectives at the forefront of the story and would probably help neurotypical readers to be less ableist and more supportive (if they were open-minded, which if they purchased the book, they probably are).

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Photo of the front cover of ‘If the World Were a Village’ Third Edition. By David J. Smith. The front cover has a mottled dark blue background. A fuzzy circle approximately 15cm in diameter representing the world is in the centre of the page. Dark green colour represents the land mass and dark blue the sea. On the upper right hand side of the largest section of land mass there is a forest of lush green trees interspersed with groups of buildings of differing sizes with red roofs, white walls and blue windows. Outside the circle in the upper right-hand side and lower left-hand side is a large (2cm) yellow star with 5 points. The star on the bottom of the page has a triangular strip of yellow leading to it from the right- hand corner of the page. The title of the book ‘If the World Were a Village’ is at the top of the page in large yellow print. At the bottom of the page in slightly smaller yellow print is the text ‘A Book about the World’s People’.

Quoting directly from the book:

“This book is about “world-mindedness,” which is an attitude, an approach to life. It is the sense that our planet is actually a village, and we share this small, precious village with our neighbours. Knowing who our neighbours are, where they live and how they live, will help us live in peace.”

It condenses the world into a small village of 100 people in order to make comparisons between people in the world easier for children to comprehend. Each person in the village represents 71 million people from the world. The comparisons range from nationality and language to money and food security. For instance, only 9 out of the 100 villagers speak English; 21 speak a Chinese dialect.

The illustrations are quite stunning with bold colours and show a diversity of able-bodied adults and children throughout the book (although I might have seen a couple of walking canes- the pictures do not focus heavily on detail) as indicated by skin colour and clothing.

I found the facts very interesting myself and think this book would have to be one of the best ways to help children to understand that their experiences are just one of many ways that people are living in the world. There is not one way to be.

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Photo of the front cover of ‘Sex is a Funny Word. A book about bodies, feelings and you’ by Cory Silverberg and Fiona Smyth.The background is purple with a brick pattern representing the wall of a house. In the top half is the title of the book ‘Sex is a Funny Word’ in yellow block print, outlined in black, on a rounded square-shaped sign with red background. The sign is flush with the wall and directly above a rectangular window (with green background and pink curtains drawn to the sides). Four children are reaching up out of the window smiling. On the left-hand side, in the open window, is a child with an orange shirt, blue hair and light purple coloured skin (Omar). Omar’s right arm is raised in the air, his crutch is leaning against him and his left hand is resting on the window sill. To Omar’s left is a child with blue skin and shoulder-length straight black hair (Mimi). Mimi is wearing a red shirt and her left arm is raised in the air. To Mimi’s left is Zai, Zai has dark purple skin and hair. Zai is wearing a striped red and orange shirt with a green cardigan. Zai is resting both hands on the window sill. To Zai’s left is Cooper, Cooper is wearing a yellow shirt with a cat print. Cooper is wearing glasses and has red curly hair and freckles. Both Cooper’s arms are raised in the air. Omar, Mimi, Zai and Cooper are all smiling. In the bottom right-hand corner of the page are the words ‘A BOOK ABOUT BODIES, FEELINGS, AND YOU’ in white print on a red background. In the top right-hand corner of the page are the right side of two windows, one on top of the other with green backgrounds. On the window sill of the lower window is a pot plant containing two pink flowers and the upper window has green curtains.

This book takes four main characters (Omar, Mimi, Zai and Cooper) on a journey of discovery about their bodies, their rights, their preferred gender expression and their gender identity. The characters are diverse in appearance, gender and opinions. The only sexual activity covered in this book is masturbation, mostly referred to as “Touching Yourself.”

‘Sex is a Funny Word’ is LGBTIQ inclusive.

“Most boys are born with a penis and scrotum, and most girls are born with a vulva, vagina, and clitoris. But having a penis isn’t what makes you a boy. Having a vulva isn’t what makes you a girl. The truth is much more interesting than that!”

This book is also inclusive of people with disabilities. One of the four main characters has a visible disability and other characters pictured in the book also have visible disabilities.

What is also good about this book is that it also shows a variety of pictures of different looking “middle parts”. We don’t all look the same and the appearance of our “middle parts” changes with age. This is likely to be reassuring to some children or at least prepares them for change.

This is an excellent book to help children be accepting of differences in bodies, gender expression and gender identity. It also encourages further discussion by posing age -appropriate questions to the reader.

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Photo of the front cover of ‘Our World Bardi Jaawi, Life at Ardiyooloon’. One Arm Point Remote Community School. The background colour is bright yellow, on which are painted simple dark yellow flowers.Taking up most of the centre of the front cover is a rough- edged circle of dark blue with a continuation of the painted flowers but in a lighter blue colour. In the centre of the circle, in large capital letters of yellow are the words ‘OUR WORLD’. On a line underneath in smaller more creative print (black print with thick yellow line containing black dots down the straight length of each letter) is the text ‘BARDI JAAWI’. Underneath this in smaller print again but the same style as the line above are the words ‘LIFE AT ARDIYOOLOON’. Finally, underneath this line in plain black capital letters of much smaller print is ‘ONE ARM POINT REMOTE COMMUNITY SCHOOL’. Various sea creatures inclusive of crabs, fish and turtles are simply sketched in a child-like way, in black, at the bottom of the circle under the text. At the top of the circle, above the text, partly extending into the yellow background, is a simply sketched boat with a motor. In the boat are three characters, in black and grey, fishing with fishing rods. Fish are attached to oversized hooks on two of the lines at least. A bird perches on the edge of the boat. In the top right hand corner of the page is a brown circular sticker with the words ‘THE CHILDREN’S BOOK COUNCIL OF AUSTRALIA, SHORT-LISTED BOOK’

This book documents activities undertaken by the children of One Arm Point Remote Community School (Western Australia) as part of the One Arm Point Culture Program. The program was initiated in 2008 to “find ways to pass on their knowledge and ensure that Bardi Jaawi traditional culture and language was kept alive for future generations”.

This book is beautifully designed by Tracey Gibbs. It includes photographs, drawings and recounts by the children of their experiences participating in various cultural activities from fishing and crabbing to looking for bush onions.

Clear, step-by-step directions with accompanying photos are provided throughout the book for some of the activities such as ‘Cooking Pandanus’ and ‘How to make a bough shelter’ in a recipe-like format. However, it is recommended that the reader does not repeat these activities without adult supervision and checking that they do not contravene local law (the Bardi Jaawi have Native Title over their land, sea, reef and islands).

Traditional stories and words (along with guidelines for pronunciation) are also shared in this very thorough book for children on the Bardi Jaawi culture.

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Photo of the front page of the book ‘How Many Days to America? A Thanksgiving Story’ by Eve Bunting. The front cover has a pale yellow border about 1cm thick. At the top of the page are the words ‘How Many Days to America?’ in large black print. Underneath are the words ‘A Thanksgiving Story’ in smaller black print. The text is justified to the right. To the left of the text are several pale yellow ropes extending up next to a light brown mast of a small wooden boat. Part of one end of the boat is seen below the text, containing people all standing closely together. They look as if they could topple over the side of the boat easily in poor weather. There are two children nearest the edge of the boat, central to the front page. The girl in a pale pink dress, with a white shirt underneath, looks up at the boy in the collared white shirt. Behind the children stands a man and a woman both with serious expressions. The woman is wearing a bright pink long-sleeve top, blue shall and green skirt. The man is holding onto one of the ropes and is carrying a small sack on his left shoulder with the other arm. He is wearing a white-collared shirt, brown trousers and brown wide-brimmed hat. The sky is pale blue and the water appears choppy in shades of blue, purple and white.

Although it was published in 1988, this book is very relevant today. The story is narrated by a child, who’s family, after being visited by soldiers, needs to flee their home country so quickly that they take no possessions besides the clothes on their backs and jewellery to be traded for safety.

Their journey on a small, dilapidated boat, with other people seeking asylum, is harrowing. As each obstacle confronts them, the child’s parents reassure their children that they will soon reach freedom. Eventually, they reach the shores of America and are warmly welcomed with a feast to celebrate Thanksgiving.

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Photo of the front cover of the book ‘My Brother Martin: A sister remembers. Growing up with the Rev. Dr. Martin Luther King JR.’ By Christine King Farris. The background of the book is pale grey. The words ‘My Brother’ are in the top right corner, in lower case, in such a way that each letter appears as a product of rough colouring-in (in black) of a small uneven square and the uncoloured part forms each letter. Underneath ‘My Brother’ is the name ‘Martin’ in red block capital letters outlined in black. To the left of the page is a large head portrait of the Rev. Dr. Martin Luther King JR. The head portrait is a side profile and it is a slightly darker grey colour than the background and appears almost as a shadow. He is looking slightly upwards with his hand in a fist against his chin, which he holds between his thumb and forefinger. He has a neat moustache and the top of his white collar can be seen at the bottom of the page. To the left of the head portrait is a small blue square with rough edges, inside of which can be seen a young girl with her hair in a plait, tied up with a long, thick bright pink bow. The girl is wearing a bright yellow top. She is smiling and looking up into the eyes of the Rev. Dr. Martin Luther King JR. side profile. Below the girl are the words ‘A sister remembers’ in blue and below that in smaller print is ‘Growing up with the Rev. Dr. Martin Luther King JR.’ At the very bottom of the front cover, justified to the right, in red print, is the text ‘NAACP IMAGE AWARD WINNER. A CHILD MAGAZINE BEST BOOK OF THE YEAR’

This book is beautiful. It is beautiful for it’s illustrations, it’s message and it’s celebration of family.

It is narrated by Christine, Dr Martin Luther King JR.’s (M.L.) older sister. Christine recounts innocent childhood pranks, which are beautifully illustrated including the priceless expressions on the faces of their adult targets. However, their innocence is tainted when neighbourhood friends tell them they are not allowed to play with them because they are “negroes”.

The realities of racism to which they had been mostly shielded from were described and explained that day by their mother (Mother Dear). Christine and their siblings were given an excellent education on how to speak up for themselves, with the examples that their father gave when regaling them of tales of his day over the evening meal. On the day of rejection by the neighbourhood children, M.L. was heard by Christine to say to his mother “Mother Dear, one day I’m going to turn this world upside down.”

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Photo of the front cover of the book ‘Nelson Mandela’ by Kadir Nelson. A head portrait of Nelson Mandela covers the entire front page, which has a reddish black background. He has short thick white hair perhaps an inch long all over and cleanly shaven face. His brown skin has warm orange red undertones. His face is illuminated by bright light, which reflects mostly down the centre line of his face. Several deep, long wrinkles line his forehead. Fine and feathery wrinkles are under his eyes. His thick red lips as neither turned up nor down. However, deep crevices either side of his mouth and nose may indicate an expression that relies on slightly raised cheeks. His shirt collar is bright white with straight edges with the top of his black jacket difficult to see against the dark background.

I find it hard to appreciate this book with a fresh perspective because I have read ‘Nelson Mandela: The Long Walk to Freedom’. This children’s book manages to simplify his very eventful life into a story suitable for children. However, you don’t really get to know the man like you do in ‘The Long Walk to Freedom’. His character has to be imagined from his deeds, which were exceptional.

Mandela’s childhood and his experiences with the chief and elders are a wonderful introduction to the book. This book briefly covers his studies and work as a lawyer defending people who had been unjustly treated, his life as an organised activist, in subterfuge, during imprisonment and finally when he was released from prison a free man and true leader. It’s a fair introduction to apartheid and one of the key figures in it’s dismantling.

 

 

 

 

Autistic voices

Our state autism organisation is called AMAZE. According to their website “Amaze is a member-based not-for-profit organisation and is the peak organisation for Autism Spectrum Disorder (ASD) in the state of Victoria. Amaze represents around 55,000 Victorians who have ASD and work for the benefit of all individuals and their families and to promote better understanding of ASD in the general community.”

To promote a better understanding of autism in the general community is a massive task when there is so much misinformation about it. The AMAZE Facebook Page posts are often followed with passionate comments about the sorts of ‘awareness’ articles they should and shouldn’t post from neurotypical parents of autistic children versus autistic people. A lot of the comments reflect ignorance and fear. The debates are predictable and painful.

Some neurotypical people, such as parents of autistic children, believe that autism is the worst thing that has ever happened to them or that it creates undue stress on their children so they wish their child didn’t have it and they would embrace a cure. Meanwhile, autistic people who embrace their autistic identity, both their strengths and vulnerabilities, feel that their disability arises from a lack of acceptance and inclusion. Not only do autistic people feel that they are undervalued and therefore discriminated against but that they are a likely target for eugenics through the search for a “cure”.

AMAZE will never please everyone but it should be clear which path favours social justice. Unfortunately, social justice has never been an easy path to take. If AMAZE chose to please the majority (a numbers game) they will be catering to neurotypical narratives of autism, which can often be ableist and unintentionally harmful to autistic people through stigma. If they chose to please the minority they are doing right by disability advocacy guidelines “Nothing about us without us” but they will lose popularity and likely donations to further “promote a better understanding of autism” (ironic).

We can support autistic people AND their families while being respectful to autistic people but the task of helping the neurotypical majority to see that seems enormous. It’s almost as though you need to give people a degree in autistic experiences to understand why this is necessary.

Perhaps AMAZE has decided to tackle the difficult path with their recent attempt at doing something different for the World Autism Awareness Day (autistic advocates would prefer the day to be called ‘Autism Acceptance Day’). Instead of the usual march, sporting blue shirts with the latest prevalence numbers printed on them (we are not a number), AMAZE chose to call for autistic people to video record their stories and send them in. The stories were edited and condensed into a 17 minute movie shown at cinemas in Victoria, on the 2nd of April and available to be watched online or by purchased CD.

The initial call was for autistic people to contribute but a few family members chose to speak on behalf of their child/children from their neurotypical perspective and how it affected them as carers, which was particularly unfortunate in the cases where the children were portrayed as a burden. However, the broader message of acceptance was clear enough for those willing to listen.

I chose to watch the movie online, in the comfort of home, with my autistic sons so that I could expand on different concepts that were raised. Much to my surprise and my boys delight, part of my video recording featured in it (at 14:03 min)*. You can view the edited movie and the individual videos at www.spectrospective.com.au. I’m curious to know if you found that it helped you to understand autism from the lived experience and made you question the common narratives of burden, numbers and cure.

*Although my boys were keen to contribute a video recording of their own, my husband was concerned about their privacy, which I respected, so they did not contribute.

Fairness, anxiety and disability

After the annual ‘Ride to School Day’ (where I fell off my scooter) our school introduced a monthly ‘Ride to School Day’. Jeremy, Damian and I have participated in it several times since (with me on a bike not a scooter). Each time that we have done it has been somewhat stressful for me (and my boys but they still insist on doing it) not because of the risk of injury but because of the risk of meltdowns. What usually happens is that one boy insists he wants to turn around and go home and the other boy insists he must and will go on.

Although, my boys have many strengths they also have some challenges due to their unique autistic traits. Traits that make participating in events that test their endurance more challenging than for many other children. Jeremy has anxieties around order, routine and doing things the ‘right way’. Damian has many anxieties about things he perceives to be dangerous and has greater sensitivity to touch, pain and internal discomfort. Regardless, of how their challenges affect them on these events they insist on doing the ‘Ride to School Day’ anyway.

This morning, Damian initially said he didn’t want to do the ride, which was fine by me. I said reassuring “That’s fine your Dad can drive you to school with the school bags”. Of course, as soon as he realised that he had the choice he changed his mind and with a sharp intake of breath I said “Are you sure? I don’t want you to come if you are going to complain the whole way.” He was sure.

So off we went and the usual challenges ensued. Damian scratched his leg on the bike pedal (no broken skin) and stopped to whine about it, both boys kept trying to overtake one another and got upset about whose turn it was to lead and Jeremy complained about tired legs but ten seconds later was riding too close to Damian saying he was going too slow. I had offered 3 tokens (to add to their reward charts) for a ride without complaints and reminded them to good effect until…

50 metres before the bridge Damian stopped and refused to go any further. It was a very well-built wooden bridge with thick wooden pylons and planks. I’ve never seen a more sturdy looking wooden bridge before but it was high up over a body of water (an inlet) and from a distance may have looked imposing. We had all crossed this bridge many times before. In fact, before, it had been Jeremy and not Damian who was nervous about it.

Damian insisted he wanted to go home. I offered another token for crossing but to no avail. I explained how safe it was and how he had crossed it many times before but fear was resolutely setting in. I recognised that Damian had passed the limits of effective coaxing and external motivators. I could have offered him 20 tokens and scientific evidence from a construction engineer and it wouldn’t have made any difference.

I tried going on ahead without him. I thought, if he sees Jeremy and I on the bridge he might realise it is safe. I even jumped up and down to illustrate the point that it was safe. It didn’t work. I called Andrew on my mobile phone and he suggested I carry him across. However, the idea of it only intensified his feelings (I guess carrying him would make him even higher off the ground). I thought if we go back home we will be very late for school and Jeremy will refuse to go back anyway and become just as upset as Damian so I had no other option.

I told Damian that I was going to have to carry him against his will because we had to go to school and that he would never have to cross that bridge again after that. I picked him up and carried him to the bridge. Once on the bridge, I put him down knowing that finding that nothing awful was happening it would reassure him a little. He was still very anxious but I held his hand and he walked with me while I constantly reassured him until we got to the other side.

Jeremy had been so helpful just by being understanding and patient and I told him as much and how much easier it made things for me. However, when we got to the school and I confirmed that they’d both be getting their full quota of tokens, Jeremy was less understanding. Jeremy didn’t think it was fair that Damian could complain so much about the bridge but still get just as many tokens as him. Jeremy is very insistent upon what he considers as fairness.

Fortunately, I had explained to Jeremy before about Damian’s anxieties and how it made things harder for him and how we had to be understanding of his disability (not penalize him for it). Crossing that bridge was extremely difficult for him but he did it, so he gets the tokens. His complaints were expressions of great distress in this case and therefore didn’t count. Jeremy knew how distressed he was. In the future, it would just be Jeremy and I doing the ‘Ride to School Day’*.

Anyhow, now it is clear to me that I need to have a bigger discussion with Jeremy (and Damian) of what it means to be privileged (not just disability) and the social model of disability so that he can challenge his perception of fairness. Wish me luck. I’ll let you know how it goes.

*we can’t avoid a bridge on the way to school, the alternative way includes a road bridge and Damian is equally terrified of riding on the road.