There’s a recurring pattern that can be seen in countless organisations and government committees that have a focus on autism. Being autistic myself I’m fairly adept at recognising patterns, but this is one I wish I didn’t keep seeing. Read more
Tag: Advocacy
Understanding Autism
This is based on a presentation I gave to colleagues where I work today titled Understanding Autism. Although not a transcript, the text here is based on my detailed speaker’s notes. Read more
A Letter To Autism Parents
Too many parents of autistic children look at actually-autistic advocates and dismiss us. “Not like my child.” Maybe not on the surface, not today, but we were all children once. And you don’t know what we experienced growing up.
That’s the point, you see. If you’re not autistic you can’t put yourself in the place of someone who is. Empathy doesn’t work with people whose brains behave in different ways. Who experience the world so differently from you.
We who are autistic know this. How could we not? It’s been our daily experience throughout our whole lives. We understand your child because so many autistic experiences are relatable to us all.
What you see in us, the ones who step up and try to educate you about autism, is the culmination of years of practice and learning. Years of experience of simply existing as autistic in a neurotypical world. We weren’t born fully-formed as advocates. We have taken on that role because we feel a kinship with other autistic people. We know how it feels to grow up autistic. We remember the things that would have made our lives better and we try to provide them for those who are growing up autistic today.
We’re not in it for ourselves. And we’re not here for you so much as for your child. Our aim is not necessarily to make your life easier (although that can be a welcome side-effect). No, we share our hard-won experience and insight so that your child can have a better life through being better understood and accepted.
So when you as a parent see advice from actually-autistic people, instead of thinking that your child could never hope to achieve what you see in us and dismissing what we say, start believing that the potential exists inside them.
Because when you stop thinking of your child as a tragedy, as lost opportunities, as damaged, and start thinking of them as a whole person, complete, you will lift them to greater things than you imagined when you first heard that diagnosis.
Autism is not a curse, it is not a blessing. It simply is. We’re different but we’re all human beings with similar feelings, hopes, fears, dreams and desires. As autistic people we don’t get as many opportunities in life. You can help change that, you can help us gain acceptance. You can help us achieve our full potential.
We advocate. We do what we can so that the experiences and challenges of being autistic are explained and can be more widely recognised and understood. The rest is up to you. If you want your child to be understood and accepted, that starts with you. Please don’t let us down. Don’t let your child down.
Advocacy Is Not A Popularity Contest
If I mention free speech I bet some of you will run away screaming. So I’d better not mention it. You know. Free speech.
Some people mention free speech as if it’s some magical incantation that protects them from any consequences, whatever they say. This is the “Freeze Peach” described by the fantastic Paris Lees in her article for Vice where she challenges Germaine Greer’s transphobic hate speech. It’s the free speech that Milo Yiannopoulos cries about when he’s rightly no-platformed.
Because these people with their bigotry try to use this idealised free speech to claim they have a right to push their messages of intolerance. They don’t. They most certainly don’t. If they are given a platform they use it to incite hatred that leads to violence against their targets. They are bullies, trying to recruit and stir up other bullies. Trying to build a cycle of hatred and violence. They are evil.
Hate speech must always be denied a platform. It must be quashed. It’s imperative to come down hard and fast to stop it spreading. Giving a platform to hate speech says that it is acceptable. Allowing it is the same as accepting and condoning it. If you’re not against it, you’re complicit in the attacks.
I saw something ugly last night. Something disturbing. Something that unfortunately happens far too often. But last night it happened to my dear friend Emma Dalmayne. So that makes this personal.
There was an unambiguous incident of anti-autistic hate speech in a Autism Facebook group. Emma quite rightly tried to stop it: she was the one that got slapped down by the Admins. Yes, the group Admins ganged up on her and bullied her into leaving the group. They protected the perpetrator of the hate speech.
That’s so very wrong. That’s saying that hate speech is acceptable, but opposing it isn’t. What the hell kind of example is that to be setting? These people call themselves allies to the autistic community? Yeah, well don’t do me any favours! I’ll do without that kind of “support”, thank you very much.
I know what support is. I know what allies are. And I know who my friends are. There’s a lot of hate out there, a lot of people who would attack us simply for being autistic. Who would deny us our rights. Who are actively engaged in trying to harm us, even eradicate us. Who see us as a disease. “An epidemic”, “a plague” is how they refer to us.
My friends stand up against that. I stand with them.
No More Injustice: #JusticeForKayleb
I’m wondering why
They don’t value young lives.
Citations get written
Cos you just don’t fit in
To society’s round hole
You wind up on parole
Through no fault of your own
Your disabled “behavior” —
I’ll give you a flavor:
Kicking a trash can,
School called the lawman,
Up in front of the big man
For expressing your feeling,
The marked cards he’s dealing:
It’s your life they’re stealing.
Your life they’ll shatter
They don’t think you matter
They don’t really know you
They just try to show you
It’s they who are strong
So you must be wrong.
You’re eleven years old
Gotta do what you’re told,
Your life’s bought and sold,
The authorities are cold.
Their response was so drastic,
Charged with being autistic:
So these guys are tellin’ me
Your expression’s a felony?!!
Ignorant and lazy,
These guys drive me crazy;
They don’t care enough
To learn about this stuff,
And providing support
Just isn’t import-
ant to them.
So,
We’re rounding up friends
To make sure this all ends,
The state must make amends,
That school gotta learn,
Their ways gotta turn,
From the bad to the good.
Accept that they should
Support all their kids,
Not just shut the lids
Of the boxes they use
To excuse their abuse
By assigning some label
To say you ain’t able.
Please sign the petition.
Pride Positive
I’m proud and I’m not ashamed of it. Pride attracts a lot of negative responses: it’s named as one of the seven mortal sins in the Christian faith and it’s all too often conflated with egoism and hubris. I will argue that feeling pride is a good thing, a positive response to positive actions and circumstances.
To begin we need to define what pride is, and the first part of that will be to remove any confusion by identifying what it is not. Pride is not the excessive, self-absorbed arrogance of hubris. It is not the over-estimation of one’s own abilities, nor is it the egoistic self-congratulation of the narcissist.
Pride is a recognition of one’s own worth, that deep satisfaction which results from a job well done, an uplifting feeling of self-esteem. Pride is the natural step beyond simple self-acceptance: once you have learned to accept yourself as you are then it follows that you may begin to like yourself, to derive pleasure from aspects of your identity. I put it to you that being proud of who you are, of what you have achieved and what you may be capable of, is an act of love: to love yourself is to feel pride in yourself.
Pride is entirely a positive emotion. It arises when you feel good about yourself, when you feel worthy. It is empowering. In many ways pride is opposite to embarrassment; where embarrassment is the acknowledgment of failure, pride comes from success. Being proud is a celebration.
So when I say I am proud to be autistic, proud to be a trans woman, proud to be Lancastrian and proud to be married to Anne it is an indication of the high value I place on these things and the degree to which they form part of my identity. My pride is my internal celebration of them, my recognition that they shape me and make me the person I am. My pride gives me self-belief and the strength to deny any who would put me down. They cannot belittle me because I know who and what I am and where I come from: I know I’m worth something.
I Support @Sonnolenta
The story so far: this open letter on a friend’s blog calmly and rationally asked a number of the chefs from TV’s Iron Chef and Chopped to consider alternatives to Autism Speaks (AS) when supporting autism charities and autistic people. It sets out the well-publicized issues with AS’s repeated negative portrayals of autism and autistic people as tragic, broken and a burden on the rest of society. Portrayals that strongly suggest the lives of autistic children are defined by suffering; that carry the unspoken presumption that it would have been better if autistic people like me and many of my friends had never been born.
Please take the time to read Cristiana’s letter. It was written in response to her autistic son’s reaction to discovering that chef Michael Symon was to donate $50,000 to AS. She pleads from the heart as well as the head for autism organizations such as ASAN and AWN to receive the recognition they deserve. Let me be clear: she is not demanding that anybody cease their support for AS just on her say-so. Rather, she sets out the evidence to support her case, and asks that the reader makes an informed decision based on that.I’m posting this to signal boost because she could use all the support she can get in this. If you agree, please add your voice to hers and show that we are not just a few isolated individuals but an active community.
Thank you.
Righteous Anger
There is a time and place for reasoned debate, for putting a point across politely but firmly. Such as when your meal at a restaurant isn’t what you ordered, or when you’re comparing favorite bands with a friend. Situations that really don’t affect your life very much: maybe a temporary disappointment at most.
But there are other times, other places, where the stakes are higher.
A matter of life or death.
There are many hate groups. They target individuals and groups that they perceive as different, as lesser people — sometimes not even people at all. They will spread disinformation, try to sow doubt and fear to stir up feelings against their targets. Ignorance breeds fear, which can lead to hatred and persecution. The purpose of these hate groups is simple: to drive out or eradicate their targets.
Who do they target? It might be you, your family, people like you, friends, neighbors, people a couple of blocks over, people in the next town, state, country. Where do you draw the line and say that somebody is no longer your concern? At what point do their differences make them undeserving of your support and compassion?
If you are the target of persecution, injustice, hate, are you going to respond calmly? Some might. I probably would. At first. But when that doesn’t work, what then? You have two choices: run away or stand and fight.
If somebody else is the target, what then? Do you walk on by, leaving them to their fate? What if it was a woman walking along the street and getting hassled by some guy? What if she was your daughter? Well, she is somebody’s daughter. Probably somebody a lot like you.
Does the thought of this happening to somebody close to you anger you? I know it angers me.
Those people on the receiving end of persecution: they’re a lot like you and me. They can try to run away or they can try to fight. If they run the haters win. If they fight the haters are likely to win: like most bullies they pick on the weak.
But if you and I stand with them… If we bring our friends… If we harness our righteous anger and direct it at the oppressors…
All of us standing together become strong. Stronger than those who would destroy others.
Be angry! Be passionate! Fight for what is right. Stand up against those who would harm the innocent and helpless. Because if you don’t, who will? And when your turn comes, who will stand by you?
Those people who are being targeted right now by various hate groups bent on their destruction are your brothers and sisters, your fellow people. And like these Muslims in Pakistan who banded together to protect Christians while they prayed, you can show that being fellow human beings gives a connexion that transcends any difference.
You can always recognize hate speech. Whenever a group is being singled out, portrayed as different to the speaker, as less than the speaker, that is hate speech. Whenever a group is denied a voice so you only hear one side, that is hate speech.
And when members of that group express their anger, instead of ignoring them or telling them to be quiet, think about why they feel angry. How they are being treated to provoke such a reaction. And listen to their voices. Understand them. And stand with them.
This post was inspired by the ongoing activism in the Autistic community against the hate speech of Autism Speaks, their tactics of portraying Autism as a disease to be feared and eradicated. But what I wrote applies everywhere there is hatred and fear. Please make the effort to reach out to those who are the targets of such hatred. Understand them. Support them. Be for what is right by standing and fighting against wrong.
Thank you.
Being #posAutive: Supporting All Friends of Autistic People
EDITED to include ischemgeek‘s words (underlined below) which explained things more clearly and succinctly than my own.
EDITED to improve the focus of this post on my main point by removing the direct reference to a tweet by JRE.
During yesterday’s #boycottAutismSpeaks Twitterbomb I read a tweet that criticized the action for being against a target. Now, I support the criticism and boycott of Autism Speaks for a number of reasons which I explained in my previous post. But it started me thinking about the many individuals and organizations who work hard in support of Autistic people by providing information and assistance, and what a positive force they are.
My idea is to have a day where we shout out about all the great work these people do on our behalf. A “Thanks for being allies/thanks for speaking out/thanks for your voice/these are people you should be reading” thing.
I realize I’m not going to be able to put something together without help, so I’m asking. If you want to help me put together an event to celebrate all the many people who work to improve the lives of Autistic people then please get in touch.
Together I hope we can broadcast our message loud enough to drown out the likes of Autism Speaks. Who’s with me?
I Support #BoycottAutismSpeaks
Autism Speaks is a high profile US charity. Their website describes their mission as “funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families”. So why do I have a problem with them? Allow me to explain…
My Autistic Dance 