Michelle is an Australian writer and neurodiversity rights advocate, with a background in education and psychology. She lives in the Blue Mountains, NSW, with her neurodivergent and neurodiverse family- husband and 6 kids, dog, 2 cats and numerous chickens. Michelle writes about Autism, Bipolar, Depression, Human Rights, Injustice, Inclusion, Acceptance, Homeschooling, Parenting, Advocacy, and occasionally Chickens and Gardening. You can find Michelle's writing online by visiting
It’s been quite some time since I have managed to write anything for Aussie Mum Network. The main reason has been that I am trying to complete some study this year.
This article was originally published by Michelle Sutton on her blog “Amazing Adventures” and can be found here.
First some history from Wikipedia: "World Autism Awareness Day has been held every year since 9 September 1989. It was designated by the United Nations General Assembly resolution "62/139. World Autism Awareness Day," adopted on 18 December 2007, proposed by Qatar, and supported by all member states. The resolution had four main components:
• the establishment of 2 April as WAAD!
• participation of UN organizations, member states, NGOs and all private & public organizations in WAAD!
• raise awareness of autism on all levels in society!
• to ask the UN Secretary-General to deliver this message to member states and all other UN organs.
I suppose in 1989 a World Autism Awareness Day may have been useful in some ways. After all, at that time the diagnosis of Autism had only been available for about 40 years, and Autism was not something most people knew about. In fact, in the 1940's Donald Gray Triplett, now in his early 80's was the first person ever diagnosed Autistic. Although I can't speak on his behalf, I'm pretty sure that World Autism Awareness makes no difference to Donald in his everyday life.
I can, however, speak on the behalf of my children. And I can tell you with all certainty that World Autism Awareness Day does not stop students at my sons school calling him stupid when he has to seek clarification on work tasks because he didn't understand the way the teacher communicated.
World Autism Awareness Day does nothing to stop students at my sons school calling him rude when he tries to assertively explain his viewpoint in his somewhat monotone voice.
World Autism Awareness Day does not prevent people from staring at my daughter if she has a sensory overload triggered meltdown in a public place and making snide comments about her needing a good spanking.
World Autism Awareness Day doesn't stop a mother in my community referring to my children as c*#^s who have behaviour problems because of my parenting and insisting awareness. Those kind of situations can not be helped by awareness.
I would actually argue that awareness can in some instances can hurt my kids. Like when students at my sons school say to each other- "don't do that, it makes you look Autisitc". I'm not going to break down for you how many ways saying something like that is wrong (mostly because, to be completely honest, I can't stand the thought that you might have been reading my blog for a while and still not know why that statement is so offensive). But I will say that hearing his neurology referred to as an insult breaks my son just a little bit more each time it happens.
There are others who agree with me. They are Autistic adults. When I asked them if World Autism Awareness Day helps them they said:
Kassiane- "yeah it helps me by making the world more aware that I don't exist, but would if I was a 6 year old white boy. And then when it finds out I do exist it reacts in a way that's a really awful amalgamation of insisting on denying my existence and acting on every awful hyperbolic stereotype, thus resulting in me being invisible except when people are wiping their asses with me. Oh wait that's the opposite of helping."
Lei- "Awareness does not help me. I am aware of a great many things, but that does not mean I understand or accept them. Almost everyone I've ever met is "aware" of autism. That doesn't mean they accept me, or think it's okay to be like me. It just means they recognize my existence. That just seems weird to have a day set aside to say "Yay! You exist" and nothing else. I don't think it helps anyone to be tolerated once a year. I do plan on "celebrating" that day by reframing it as Acceptance Day and using it to open the library and hopefully, to change some minds about autism, acceptance and the value of human diversity.
Acceptance on the other hand...... true acceptance of Neurodiverstiy..... true acceptance of the idea that everyone is valuable just as they are and has something of worth to offer even if they are part of a minority group..... that would.
Acceptance of difference would stop students making value judgements on people needing communication clarified. Acceptance would make it inappropriate to make jokes and form insults based on someones perceived differences. No one wants that for their children. Acceptance of things we see but don't always understand would mean I and my children would not be subject to criticism and hurtful comments when things get hard for us in public.
Acceptance is the only way my kids are going to grow up and not have to face the societally induced struggles my Autistic friends have faced in their life times. And let's face it, no one wants to know their kids are going to grow up having to fight every day to be deemed worthy by their peers just because they process information differently and need more support than most people do.
No one wants to know their kids are going to be the butt of jokes and snide remarks because their voice doesn't have the same range of intonation as other people.
No one wants to know their kids are going to grow up knowing that one day a year they are celebrated but the rest of the year they are going to have to "tough it out", "suck it up" and "just do what you can not to draw attention to yourself and you'll do fine".
So World Autism Awareness Day does not help my children. Or my friends. I am asking you to please, please, please, help me spread the word that what Autistic people need is ACCEPTANCE not awareness.
For my kids. Please.
If your parents kept trying to make you act differently than came naturally to you...
if you kept getting the message from them that you are just not good enough the way you are.....
if you had to behave a certain way before you could have a hug.....
if you were ignored when you were trying to communicate the only way you could manage.....
if they sent you to therapy to make you less clumsy, red headed, tall, short, freckled, Autistic....
if you could tell your parents were afraid of you being you.....
what do you think that would do to you?
Meet Beth Ryan. Beth is the mother of two children: Evelyn (7) and Maxine (4). Beth blogs at Love Explosions, is heavily involved with the Boycott Autism Speaks movement, and is the founder of Parenting Autistic Children with Love & Acceptance.
It is important to Beth to promote a positive image of Autistic people and to acknowledge Autistic people as the true stakeholders and spokespeople for the Autistic community.
Beth is currently a stay at home mother but has a background in marketing and is a former small business owner. In her free time, Beth enjoys reading and spending time with her family.
Scorch the earth by Beth Ryan
(originally published here)
You are my child. You are the child that I have. And the very child that I wanted.
Your Autistic body is exquisite.
May it always respond to you. To your will alone.
You owe your gaze to no one.
May you rest it only on that which offers you contentment.
Your flapping hands express your joy.
May they laugh at those that seek to make them table ready.
Your Autistic spirit is on fire.
May it burn bright in sight of those who would extinguish it.
You owe compliance to no one.
May you incinerate the intentions of all those who would force it.
Your worthiness of humanity is infinite.
May it ignite the blazes of love and acceptance to which you are entitled.
Every part of you is Autistic.
And I love every part of you without qualification.
There will never be a “but” after my love.
May we scorch the earth of all that endangers your selfhood.
You can find Michelle at her wonderful blog Different Kinds of Normal or at her other blog Amazing Adventures Autism and you can find Beth Ryan at her blog Love Explosions.
This article has also been published by The Huffington Post here.
April. Autism Awareness Month. And another murder. Sixteen-year-old autistic boy Robert Robinson was murdered by his mother, who then killed herself. News reports say she couldn't cope with her son's allegedly violent behavior and the lack of support she had in caring for him. So they sympathise with her. They encourage us to feel sorry for the woman who murdered her son. They want us to pity her and justify her ending her child's life by blaming her stress on him being autistic and his "violent" behavior.
There have been other children murdered by their caregivers over the years. Too many to name.
How do we get to this point as a society? How is it OK to learn that a child has been murdered by their parent and then feel sorry for the murderer?
Are you familiar with the term "stigma"?
shame, disgrace, dishonor; stain, taint, blot, blot on one's escutcheon, blemish, brand, mark, slur
How about "stigmatise"?
condemn, denounce; brand, label, mark out; disparage, vilify, pillory, pour scorn on, cast a slur on, defame, discredit
There are lots of things that people can be stigmatised for. Some stigma is quite subtle, falling into the "label" category, some is more obvious and in the "denounce" category, and some really noticeable and easy to see as vilification.
Here's what someone said to me last year when I told them I have two autistic children:
"Oh, no! So what do you do? Are they like real members of the family?"
The reason people feel sorry for me when they find out my kids are autistic is that they don't know anything about autism except that it makes them hard to live with. They know this because the media tells them.
And this is what I'm talking about when I say "autism awareness" doesn't help autistic people, and that the media has no place blaming autistic children for their own murders.
So instead of listening to the facts being spoken by autistic people and their allies, people listen to the media tell them that autistic people are violent and difficult to live with. So society moves down the slippery slope of assumption until it reaches the point where vilifying children based on a diagnosis is acceptable.
Did you know there are autistic adults all around you? They are working as doctors and nurses, teachers, ambulance officers, cleaners, artists, writers, professors, journalists, pilots, executives, actors, sportspeople, good parents. But many of them don't tell you they are autistic because they don't want to be stigmatized.
When they were younger, they were kids who were just like Robert Robinson and all the other children who have been murdered by their parents for being autistic.
Some were nonverbal as children, some still are nonverbal as adults and are making significant and valuable contributions to society as writers and poets, and some were labeled "violent" as children and are now working with children like them as their mentors.
So why do the media report on murders of autistic children by blaming the children and sympathising with their killers?
Well, basically, they do it because it sells.
People want to hear that story. It gets ratings. They do it because the public wants to hear it. And for that we should all be ashamed. We are encouraging the media to help perpetuate the stigma against autistic people.
We accept these stories without batting an eyelid because we have already been primed to believe that disability is bad and we don't bother to question it.
When we sit quietly by and listen to this discourse, we are complicit in the murders of innocent people.
When we sit silently and fail to question the assumption that mental illness or disability is the cause of violence, we support the media in their continued assault against people like my children, who just want to do what they need to -- and receive the supports they require -- to live their lives as productive and happy members of society.
Are you happy to let Robert Robinson's death be blamed on him being autistic?
Are you happy to be part of the continued stigmatisation?
Many Autistic people struggle to communicate the way most of society communicates. It is a sad fact that a lot of the presumptions made about a persons intelligence are wrapped up in the way they communicate. In fact, the vast majority our conventional IQ testing tools rely on the person being tested communicating verbally. So, if a child does not communicate verbally it is often presumed the child is of below average intelligence.
Earlier this month you met Amy, an non-speaking Autistic adult who writes beautiful poetry and insightful essays as an activist for Autistic rights.
Today I would like you to meet Ariane and her daughter Emma. Ariane’s blog is “Emma’s Hope Book”. Of recent days Ariane’s daughter, Emma, has been contributing to the blog. Emma is sometimes verbal, sometimes non-verbal and has been learning to communicate by writing. Emma writes beautiful stories.
Today I am not going to share Emma’s stories with you, although if you have time you can look around the blog yourself and find them. Today I am going to share with you some of Ariane and Emma’s insights into learning to read and write as a non-speaking Autistic child and how a parent can support that process. I am sharing this with you in the hope that we can begin to break down some of the damaging stereotypes that are perpetuated by the myth of “severe” or “low functioning” Autism that so many non- speaking Autistic people are labelled with.
Talking by writing
by Ariane Zurcher
You can read the original post here.
*Emma gave me permission to write about the following...*Every Tuesday afternoon I go to Emma’s school where Emma and I do a sample lesson, or Emma answers questions from staff or sometimes someone wants to share what they worked on with her and what her answer was. As Emma “talks” by pointing with a pencil to the letters on a laminated letter board she twirls her string, and often, while she is “talking” by writing, she is also talking, as she describes it, “with my mouth” at the same time. When I mentioned this to her at our last training session she smiled and wrote, “It is hard for non autistic people to multitask as well as I can.” Which was one of those frequent – oh-my-gosh-Emma-you-are-so-fabulous – moments, because, really, not only does she have a wickedly wonderful sense of humor, but whoa(!) how right she is!
Later Emma wrote in answer to the question, “Is it problematic for you to switch from the letter board to a qwerty board, she wrote, “No. It’s not a problem. Is it hard for you?” I was so taken aback by her response, because, honestly I had not ever considered that it isn’t a problem for me, so why did I assume it would be for her? And yet, I have. This was yet another reminder to me of how I presume competence as best I can with all that I know and yet, am humbled by constant little nudges urging me to go farther. How beautiful is that? Seriously?
When I began witnessing people who use spoken language like my daughter does or who do not speak at all, but write, often poetically, often beautifully, I was astonished. It was unlike anything I had ever seen before. It’s been close to two years now since that first time I witnessed in real life someone communicating this way. At first I was so incredulous, all I could do was watch and try to take in what I was witnessing. After many encounters, repeated by so many people, men, women, teenagers, boys and girls as young as seven or eight I went from shocked amazement to a more calm feeling of excitement, but even now, having spent nearly every day watching my daughter write this way, I often still feel like I’m in a dream. It is as though I have been allowed into another dimension, and it is more beautiful than anything I ever believed possible.
How did you learn to read?
By Ariane Zurcher
You can read the original post here.
A few days ago someone asked Emma, “How did you learn to read and spell?” Last night, in response to this question Emma wrote, “I learned by watching the words my mom read to me.” She went on to write, “I was able to read many years ago and could write, but didn’t have any way to show it.” I asked, “Were you able to read as a very little girl?” Emma wrote, “Yes.” “As a toddler?” “Yes,” Emma wrote again.
What is interesting about this is that for years, when Emma was very young, I assumed she didn’t like being read to because when I tried she would grab the book, insist on flipping the pages faster than I could read them, and generally seemed (to me) uninterested. But from what she wrote last night, it suggests I was incorrect about these early assumptions or at least was partly incorrect. I am no longer shocked by all that I didn’t understand. It no longer surprises me to find out, even now, how wrong I was and continue to be about so much when it comes to my daughter.
Because Emma did not sit quietly while I read to her, I thought she didn’t like being read to. Because Emma preferred holding the book and would turn the page before I had time to finish reading the words I assumed she wasn’t interested in the story. Because Emma protested if I tried to take the book from her to continue reading, I assumed she wanted to be left alone. Because Emma seemed distracted while I read, I believed she didn’t like the story, didn’t care for the book, didn’t like books in general.
How would I have viewed her various therapies, preschool, and later grade school, had we understood that she already knew how to read at such a young age? Our decisions on how to proceed, our opinions regarding what others told us, so matter-of-fact, so sure of themselves... who knew how wrong they all were? How wrong we were?
People say things like – parents know their child better than anyone. In our case no one knew our child better than anyone. We didn’t. All those therapists who worked with Emma didn’t. All her teachers, everyone who came in contact with her, not a single person during those early years ever said, “I’m guessing she already knows how to read” or “maybe she already knows, but we haven’t found a way to help her show us all she knows.” Emma’s need to move, her inability to consistently say out loud what she intends, her deep need for sensory input, her attempts to regulate herself, none of that was understood by anyone, including us.
Had we not begun to find ways for Emma to communicate through the written word, had we insisted on her “speaking,” we would continue to be in the dark. All the things emphasized in school for a child like Emma who is physically capable of articulating words made us believe spoken language was what we needed to concentrate on. What we are seeing is that the less we focus on her speaking and the more we focus on her writing, the more she is speaking.
“Hey Em, do you want to put the smaller string in your backpack, just so you have it?” I asked as we headed down to meet her school bus this morning.
“N” “O” Emma said, as she bounded toward the elevator.
You can find Michelle at her wonderful blog Different Kinds of Normal or at her other blog Amazing Adventures Autism and you can find Ariane at her blog Emmashopebook.
World Autism Acceptance Day has been held since 1989. It was started by the United Nations General Assembly to help raise awareness of Autism. At the time it would have seemed a good idea as relatively few people in the general population knew about Autism, except what they had learned from “Rainman”.
20 years later, however, “awareness” is rife. It seems most people know about Autism, and have an opinion of some sort on it, even if their knowledge and opinions are based on not much more than very general information that is fuelling misunderstandings and negative stereotypes.
Sadly, a lot of the information available to people about Autism comes from organisations trying to make a living form providing therapies, or worse- trying to cure Autism. A google search will give someone searching for information, help or support a page full of links that will tell people Autism is a disorder, a tragedy, an epidemic that is stealing children form their families and ruining lives.
Parents of children newly diagnosed with Autism looking on the web, which is let’s face it where most of us go as a first point of call when we want to learn about something these days, are met with a barrage of horrific stories that tell them their lives are now destroyed and their is no hope for their children.
But there is other information out there. It may be harder to find, but it is there. There is a movement, that is gaining momentum, of Autistic adults and their allies who are spreading the word that the time for awareness is past, and that Autistic people need Acceptance.
The people spreading this information are not being paid to do it. They are motivated purely by their desire to see all people accepted and valued as having worth in society exactly as they are and without being expected to conform to some arbitrary standard of normalcy. They are Autistic adults- some who are parents and some who are not. They are non-Autistic people who are friends or partners of Autistic adults. They are non- Autistic parents who have Autistic children. They come from many backgrounds, many countries, many ethnicity's. They have varying levels of challenge in their lives. Some are quite well off financially, some are quite poor. Somecommunicate reasonably easily verbally, others communicate by writing or typing only. Some live mostly independently, some need 24 hour support. All agree that Autism is not inherently bad. All agree that Autism is not a tragedy. All agree that Autism does not need curing.
I would like to introduce you to some of these people over the next month. Much of what they have to say will be different than what you expect, because it is different than the mainstream messages about Autism that you will have heard in the past. Please listen with open minds and open hearts. The messages these people have for us give us valuable insights into the challenges our children face daily and will face as they grow up. We can also learn a lot from listening to these people as the tell us what kind of supports are truly appropriate for our children.
To kick off I’d like to share with you an article I published last year at the beginning of April on my blog “Amazing Adventures” amazingadventuresautism.blogspot.com.au.
Awareness vs Acceptance!
Awareness- knowledge or perception of a situation or fact
Being aware of something is quite different than being accepting of it.
Acceptance- the process or fact of being received as adequate, valid, or suitable "Awareness says the tragedy is that I exist as I am. Acceptance says that the tragedy would be trying to make me any other way",
Kassiane of Radical Neurodivergence Speaking wrote, in an article published by ASAN. You can read the whole article here (and you probably should read it as Kassiane has been thinking about, and living with, the issue of awareness vs acceptance a lot longer than I have). You may agree or disagree with her that her statement is true. But the fact is, that all Autism Awareness campaigns have achieved for Autistic Adults in many cases is to help them feel that "normal" people see them as wrong.
I have a 14 year old Autistic son, who is rapidly approaching adulthood. There are many things I want to help him achieve. There are also many things I want to avoid as I support him navigating life. One of the things I most want to avoid is him thinking that I believe he is not good enough just as he is. I am very aware that one day he might read everything I have written in this blog. If he does, he will see the
posts I wrote last year in April for #Autism Awareness month. They were a series of Question and Answer style posts. No doubt if I were to sit and write them again now they'd be a bit different, as I have learned a lot in the past year, and my attitudes have changed in some ways. Life is, after all, a journey.
He will also one day read the things I will write this April. He will probably notice that this year I will not be using the phrase #Autism Awareness. Along with many other bloggers, I will be calling April #Autism Acceptance Month.
If you have time, read this article by Steve Silberman at NeuroTribes for an explanation of why- it is long, but really, really worth it. Steve has written thoughtfully and insightfully on this topic, and includes interviews with many wonderful Autistic Advocates (some of whom I am immensely grateful to have been given the opportunity to get to know online recently). I could write pages of my developing thoughts on this topic, but it would still just be the thoughts of a parent of Autistic children, and what you really need to hear is what Autistic Adults think and feel about Awareness and Acceptance. So, please do read Steve's article. If you can't make time to read the whole article, just read the next bit here, which is taken from it:
"Two years ago, [Paula] Durbin-Westby proposed that autistic people and their families and friends recast April 2 as an occasion for promoting acceptance and understanding rather than vague “awareness,” and reclaim the day as an annual opportunity to celebrate their community’s diversity and vitality. ”I started Autism Acceptance Day as a corrective to the ubiquitous negative images we see every April,” she recalls. “The first World Autism Awareness Day referred to autism as an ‘equal destroyer.’ From videos that talk about autism as some sort of soul-sucking demonic persona, to 150 empty strollers signifying that autism has robbed parents of their toddlers, navigating April for many Autistics has been like walking through a field of (stroller-shaped) land mines. No more! Autism Acceptance Day takes back April and puts it where it belongs — into the hands of Autistic people, supportive family members, friends, and communities.”
Durbin-Westby’s notion of rebranding April 2 in a more positive and proactive light is catching on with local autism advocacy groups worldwide. The Autism Society of Northern Virginia recently declared April to be Autism Acceptance Month, and other groups are getting onboard via social networks like Facebook and Twitter.
Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults – now, starting today? That’s the question I posed to a group of self-advocates, parents, and teachers that included Nick Walker, an autistic aikido master who founded his own dojo in Berkeley; the first openly autistic White House appointee, Ari Ne’eman; Emily Willingham, one of the sharpest science writers in the blogosphere; Lydia Brown, a prolifically articulate and thoughtful 18-year-old self-advocate at Georgetown University; Todd Drezner, director of Loving
Lampposts, a groundbreaking documentary on autism and neurodiversity from a father’s perspective; and the editors of Thinking Person’s Guide to Autism, which is my personal recommendation for parents
to read after their son or daughter’s diagnosis.
Throughout April this year I will be posting stories about Autism Acceptance. Sometimes I will quote others who have much more experience in this than I do. Sometimes I will talk to you about my children. Always I will be celebrating Autistic people and their achievements. I will be talking about the
difference between awareness and acceptance, and the impact the two can have on Autistic people. I hope you will join
You can find Michelle at her wonderful blog Different Kinds of Normal or at her other blog Amazing Adventures Autism.
Having persevered through all these Autism Acceptance related posts in April, and having realised the importance of Acceptance, you might be wondering where to go from here.
We are very lucky to have access to so many online resources these days. I'm going to share with you the best ones I know of. These websites and blogs have been a lot of help to me in my journey as a parent, I hope you find them helpful too.
What is Autism? by Brenda of Mama Be Good
Don't Mourn For Us by Jim Sinclair
"Splinter skills" and other words we use by Ariane of Emma’s Hope Book
I love being my own Autistic self by Landon Bryce
Blogs and Facebook Pages by parents
Emmas Hope Book
Mama Be Good
Life his way
Parenting Autistic Children with Love and Acceptance
Small but kinda mighty
And, most importantly, you need to hear the voices of Autistic people.
Blogs by Autistic people
Paula C. Durbin-Westby
Elizabeth J Grace
Sparrow Rose Jones
Michael Scott Monje Jnr
We are like your child
One thing we need to be mindful of when deciding “what to do” when our child is diagnosed with Autism is what effect a therapy is going to have on our child. There are a lot of opinions about what therapies and how much of them Autistic children need.
As parents we want what is best for our children, and therapy is a great way to support our children and help them learn the skills they need to successfully navigate life, just as school, sport, music lessons etc. are (usually) a good way for all children to learn skills. We need to be careful, though, to choose therapy that gives our children skills and support that does not compromise their autonomy and that does not aim to make them something they aren’t.
Unfortunately, there are therapies out there designed to make our Autistic children less Autistic, or “indistinguishable from their peers”’ and it is not uncommon to hear parents celebrating their child being able to pass as not Autistic after completing therapy. This comes at great cost to the child, both to their self esteem and worth, and to their idea of what their place in society is expected to be.
I’d like you to meet Kassiane. Kassiane is a vintage 1982 Autistic who has been doing activism all century. K is the reluctant mastermind of We Are Like Your Child, the not so reluctant author of the hard hitting Radical Neurodivergence Speaking, accidental cofounder of Tone it Down Taupe, and
participant in too many projects and presentations to name. She mentors Autistic children & adolescents with fierce unconditional love.
One thing Kassiane does well is tell the story of what therapy and lack of acceptance has cost her. It is an important message for parents and for society in general to hear, even though painful. Please visit her blog here and have a look around. One post in particular you should look for is called “Here, try on some of my shoes”, and you can find it in her blog archive in September 2013.
But for today, I have Kassianes permission to share the following post with you. You can find the original here. I hope it will help you understand the importance of choosing therapies and therapists that honour your child’s value as an Autistic person.
Conditioned eye contact by Kassiane
Tw: forced eye contact, restraint & other abusive 'treatment' descriptions
I can remember the last few times I made true eye contact, as clear as a snapshot.
-I was too distressed to make words happen and no one around knew sign. Eyes wildly snapped from person to person, looking for someone who could read my mind.
-I was in the ER getting stitches on my finger, which I had accidentally locked in a car door. I told them to not tell me when they were sticking me with the needles. They told me. Eyes flew to those of the person with me.
-One of those folks who thinks boundaries don't apply to him was getting too close and too cozy on the bus. Again, probing for someone who could recognize my distress.
-Someone was threatening violence in my direction at a thing I used to do, and I was meeting with one of the folks who had authority. His words on the experience are "please stop trying to set me on fire with your mind."
The elements of these scenarios are the same. Something is happening. I do not like it. I do not like it at all, and want it to stop immediately. Yelling and swearing has not worked. I can't hit it or kick it or pretend it doesn't exist. Those strategies have failed or have a 99.9999% chance of failing based on pattern data from years of experiences.
But eye contact makes them stop doing the unpleasant thing.
This doesn't make sense, does it? You've heard that eye contact is about sharing and social referencing and subtle messages and cues being sent among communicative partners. That's not what this is at all! This is the sledgehammer. This is the safeword, if you will, the "this stops now it has to it has to it has to make it stop nownownownownow no matter what".
Where did I get this idea? Therapy. That's where.
When I was a very small little child, the first thing they tried to get me to do was "look at me". Now, if I was a small child now they'd be still coercing looking at them. The new and improved way of forcing eye contact is to hold a desirable item between the adult's eyes and then give it to the small child when they look at it. This is still gross.
Back in my day, however, it was all out war. They would grab your face, they'd hold your hands down, they'd pretty much sit on you. It was a full out wrestling match until you submitted and looked them in the eye. Then, they immediately stopped. They immediately let go of your face or your hands or stopped sitting on you or stopped holding your shoulders so hard that the bones ground or what have you.
I was small. Hitting didn't work (I tried). Kicking was a no. Headbutting only worked once, biting was iffy. Covering my face got my hands dragged into my lap and held there. Dumping the chair and running was only a few seconds reprieve and led to the least comfortable hold ever. They had no compunctions about prying my eyes open when I squeezed them shut as tight as I could. No boundary violations were out of bounds. The only way to make the awful stop was to look in their eyes.
Reality land does not, in fact work that way. Eye contact is not the way to make things stop. People who know me understand that it means "something that is happening needs to not be happening right. now." Most people don't know that. People who only sort of know me can grasp that it's bad (see: "stop trying to set me on fire with your mind") but they don't know what it means. Strangers take eye contact to mean the opposite of what it does. My brain knows that for most people a straight in the eyes stare is not the signal for "something needs to stop right. now." but it isn't that easy. One of the deepest conditioned things I have is "eye contact is giving in. If you do that, the bad will stop." This is irrational and untrue and the world doesn't work that way. It's deep, though, as the first and most consistent of the wrestling matches I had with adults as a small child. This isn't what they thought they were teaching me. They claimed to be teaching me all sorts of things about eye contact. They didn't though. They wrestled me to the ground over and over to grind a lie into my head.
You can find Michelle at her wonderful blog Different Kinds of Normal or at her other blog Amazing Adventures Autism and you can find Kassiane at her blog Time to Listen.
Today I’d like you to meet Amy. Amy is a non-speaking Autistic activist who communicates by typing. You can find all her writing linked on her blog Non Speaking Autistic Speaking. Amy has a lot to say on accepting people just as they are and on the way society tends to value non-disabled people as better than disabled people. During this month I will share two of Amy’s publications with you. The first is called “I am Autistic” and it talks about the importance of the words we use when talking about Autistic people, as well as the the impact allowing someone to self identify has on their sense of worth. You can read the original publication here.
I am Autistic by Amy Sequenzia!
It is my turn to talk about identity. I want to write about it because I know who I am and I am the one who decides how I identify myself. And I am Autistic. Many other Autistics wrote about why they prefer identity-first language. Autism is all-pervasive, it cannot be separated from me; I did not “get” autism and I cannot “lose” it; I am Autistic in the same way I am a white female. I was born with these identities and I was born Autistic. My neurology shapes my interaction with the world.As it was explained several times, no one can make a neurology go away. It is part of how my way of processing experiences shaped me. It is why I write this. It is why I have the friends I do. It is why
I communicate the way I do. It is why I live my life the way I do.
Nobody says I am a person with femaleness. Nobody calls me a person with whiteness. I do not say I am a person with autism and I expect to be respected. I don’t “have” autism. I AM Autistic. I respect other Autistics who prefer person-first language if it is THEIR choice (not a parent’s choice or an organization’s choice.)
People-first language proponents, the ones who demand the use of
this language, say we should always see the person before the “condition”. There are many flaws with this reasoning. Autism is not a “condition.” It is who we are. It is disrespectful if it is imposed on a group of people who identify as Autistic. I don’t need to be reminded that I am a person. This is pretty obvious. If the language is supposed to point out the personhood, does that mean the Deaf and the Blind are not “people enough?” The truth is that the Deaf and the Blind communities demanded to be referred to by their identities – with capital “D” and capital “B”. Why can’t Autistics – with capital “A” - be granted the same respect? Let us call ourselves what we want.
But the biggest flaw is that person-first language assumes that autism is inherently bad and that Autistics “suffer” so it must be pointed out that we are “people too” like, not “people like the neurotypicals, but still part of the human race.”
I heard a story once about a racist person who was trying to sound not racist by saying that black people are “people too” as in “not as good as us, white people, but still part of the human race.” It did not work. It is still racism. When a non-autistic person insists that Autistics use person-first
language or that everyone must use person-first language when talking about autism, this is what I hear:
You, or any Autistic, are not really whole, like we, the neurotypicals, but you are “still a person”.
How much a person am I, “despite” my autism? 3/5? No, I am not saying we are like slaves, but it feels very oppressive to be told I cannot identify as I see myself. And I am not saying that the supporters of person-first language are racists. I am saying that requiring that everyone uses this
language is oppressive and it feels like an attempt to silence us, ignoring our preferences.
If proponents of person-first language do so as a way to end the stigma faced by Autistics, as one of them told me once, they are failing. By using this language, the message that “autism is bad” is
loud. It sounds like we need to apologize for being Autistics, reminding the rest of the world that we are “people too.” The message is that, if we say that we ”have autism” we might look “a little better” not so “broken.” I am not broken and I look good being my Autistic self. Autism is not all good or all bad. Autistics are not better or worse than non-autistics. We are different, we have qualities, we have flaws, we have pain, we have joy.
I am whole, I am a person, I am human, the good and the bad. And I am Autistic.
You can find Michelle at her wonderful blog Different Kinds of Normal or at her other blog Amazing Adventures Autism and you can find Amy at her blog Non Speaking Autistic Speaking.
This article was originally published by Michelle Sutton on her blog “Amazing Adventures” and can be found here.
I will not “Light it up blue”
April 2, and my news feed is littered with calls for people to "Light it up blue for Autism Awareness". To be honest, it makes me cringe. There is heaps of "Autism Awareness" going around. It's what causes students at my kids school to "joke" and "tease" by saying things like.... 'don't do that, it makes you look Autistic'. No. My kids don't need #AutismAwareness- they need #AutismAcceptance.
Acceptance is different than awareness. Acceptance means that everyone is worthwhile, no-ones neurology is made fun of, and everyone gets the support they need without having to fight legislators to provide it. This April I'll be advocating for Acceptance. I won't be supporting the Autism Speaks driven light it up blue campaign that raises them money to research to find a cure.
I won't be buying a Build-a-bear blue bear so they can give money to Autism Speaks or Autism Awareness Australia either.
Here in Australia, many people have heard of Autism Speaks, but feel we are removed from their influence and do not need to weigh in on the stand against them.
I disagree. For two reasons.
1. I do not want AS to assume that because Australians are not speaking up against them that they are welcome here.
2. We already have our own Autism Speaks here, in the form of Autism Awareness Australia.
Australians, please do not be fooled into thinking that we are safe from the Autism Speaks message here. You only need to watch Autism Awareness Australia's awareness video to hear it....
.... use of pathologising language ("complex neurological disorder", comparing Autism to aids, diabetes and cancer,etc)
..... the "Autism is a tragedy" dialogue ("...improve the lives of families with Autism", "Autism is stealing the minds and personalities of a generation of Australian children", "30,000 Aussie kids have been kidnapped, by Autism", "don't let Autism have the last say in a families life")
I will not support an organisation that sends out the exact same message Autism Speaks does. I will not support an organisation that tells my family, friends and colleagues that my life is difficult because of my children and that their lives are hopeless unless people donate money to save them. I will not change my mind about supporting Autism Awareness Australia until this message from them changes. Not even if you point out that they are doing a few good things along the way. The harm their message does to my children is real. The damage their message causes to the possibility people will accept my children as valuable the way they are is immeasurable.
And this..... THIS ..... is why the "Autism as tragedy" message of Autism Speaks and Autism Awareness Australia is so damaging..... because it leads to this:
"When I am open about being Autistic, I am handing people a weapon to punish me with. This was not the first time that my autism has been invoked during a disagreement. I have ended up leaving so many communities because I was told that I was only disagreeing because my autism meant I didn’t really understand. I have been told I am having an unreasonable meltdown when I am calm and polite but the other person is agitated and using curse words. Anytime someone wants to dismiss my opinion or experience, they point out that I am Autistic, as if that trumps anything and everything. They remind everyone that I am not reliable, that my word means nothing, that I don’t understand anything.
"Telling people that I am Autistic gives them the opportunity to understand me better. It also gives
them the opportunity to dismiss anything and everything about me as irrelevant, deluded, pathological, unacceptable. No one has to provide a logical counter for anything I say because my words are Autistic words so they mean nothing. They are merely symptoms and can be disregarded."
Sparrow, from Unstrange Mind.
Is this what you want for your children? Really think about it- how would you feel if we took a month of the year to promote that everyone be aware of you and the fact you need fixing?
Then let's change the message. My kids don't need curing. They don't need fixing. They don't need changing. It is society that needs to change, and Acceptance of all is the key.
You can find Michelle at her wonderful blog Different Kinds of Normal or at her other blog Amazing Adventures Autism.