Friday, April 17, 2015

on funding and brick walls

News headline in The Australian, 25 March 2015: "Disabled students suffer as funds dry up" (unfortunately the link displayed in my browser when I view the article seems to redirect to a subscriber only page! To read the article it seems to work if you search the title on The Australian home page)

It doesn't give me any pleasure to say that this is not news to me.

In 2012 I wrote numerous blog posts about the ironically named "Every Student Every School" funding model and the impact it would have on disabled students in public schools. I wrote to the Minister for Education, the Premier, the Opposition Leader and I went and spoke to our local Member of Parliament. I went to a protest and was interviewed on TV (which was quite the anticlimax!)! I got nothing but shrugs and form letter replies.

There is indeed now a crisis.

There is not enough funding to provide adequate support for children who are expected to just cope in classrooms that simply cannot support the physical, emotional, sensory, social or academic needs. That is what happens when individual support funding is taken away and replaced with a"bucket" of funds smaller than the total amount previously supplied.

Many, many parents of Autistic children are choosing to homeschool their kids because of this crisis. And our government doesn't care.

I read the Gonski Report. I don't know if Mr Abbott or Mr Baird did. If they did, I can't understand what their problem is. The report was very clear...... real needs-based funding for students with a disability is essential in our schools if we want to include them in a meaningful way in our education system.

But perhaps that is the issue? Perhaps our politicians don't see inclusion as a valuable goal. Perhaps they just want disabled kids shut away where no one has to see them. 

image: a brick wall and the words "another brick in the wall?"

It seems very much like our government is happy to be another brick in the wall, helping add to the isolation of disabled people from the rest of society.      

Well, they will get what they want, and it will be to the detriment of everyone.

Diversity is good, valuable and normal. Every child in our society has something to offer. In fact, I know a few primary school aged children who already understand better than our Prime Minister the value of inclusion, advocacy for human rights and being kind to those we share this planet with. Our current government shows none of these qualities, and even though people are starting to talk about these issues more openly I fear things will get much worse before they get better.

Wednesday, April 15, 2015

The dangers of looking Autistic in front of police

A while back I felt it was time to have a serious discussion with my son.

It was just after an incident involving a young lady who had an Aspergers diagnosis. From what I can tell she was in the middle of a meltdown. She was holding a knife, and had threatened self harm. In their efforts to resolve the situation, apparently a police officer felt threatened, and the young lady was shot. She died. (I apologise if I do not have all the details of this story right, it is my understanding from the news reports I saw. If I am incorrect, please let me know) I believe that if the police had known better how to help an Autistic person experiencing a meltdown she would still be alive. But they don't.

So I had a chat with my son.

I told him that no matter what, if he is confronted by police he must do what they say. If they say put your hands up, you put your hands. If they say put your hands behind your back, you put your hands behind your back. If they put handcuffs on you, you let them. If they say get in their car, you get in their car. Even if you don't know why.

I told him that no matter what, if he is confronted by police he must do his best to speak aloud, even if he feels like he can't.

I told him that no matter what, if he is confronted by police he must try not to stim.

I told him that no matter what, if he is confronted by police he must try to point his face in the direction of their face.

I told him that no matter what, if he is confronted by police he must not yell.

I told him that if he could not do those things the only safe thing for him to say is "I am Autistic. I need help."

I told him it might be a good idea if we make a card for him to keep in his wallet that explains he needs help with communication and they should call me immediately.

He listened. He took it in. He didn't remember it. We had to have the discussion again.

He asked, "is it OK to ask what I did wrong?" I had to say, "probably not".

I told him that probably the only safe thing for him to say is "I am Autistic. I need help."

You might think this is an over reaction. But Autistic people are way too often hurt by police who do not understand how to help someone who does not have the ability to advocate for themselves in the way the police are expecting.

My son is about to turn 16. He is tall. He moves awkwardly. He speaks atypically, more so when upset, and can lose the ability to speak if particularly stressed.  To a police officer who doesn't know what they are looking at he could seem threatening.

image: red brick wall under the wordsWhile usually I would advocate
for my sons right to be his genuine
Autistic self in all situations,
I would rather my son alive
than misunderstood by police.
I know not all police offers are "bad". But I also know of many many instances in which Autistic people have been tasered or shot because the police assumed they were dangerous when they did not react "normally".

While usually I would advocate for my sons right to be his genuine Autistic self in all situations, I would rather my son alive than misunderstood by police.

So I had a chat with my son.

And it felt like betrayal to tell him that it is probably not safe to be himself in front of people we should be able to trust to protect him.

At least I didn't have to tell him that his skin colour was working against him as well.

There are many others who have discussed the intersectionality around Autism and skin colour much better than I can.

"I had "the talk" with my kids this morning in the car. Not the "birds and the bees" talk. The "how to stay alive because you're black and therefore a threat" talk." 
(click here for the full article)


"In the aftermath of events in Ferguson, many Black autism moms are giving voice to their fears for their sons." 
(click here for the full article)

On the Intersected blog 

"Tario Anderson, 34 Black, nonspeaking autistic, was walking down his street to visit family on the evening of Christmas day. He was placed in the glare of police spotlights, yelled at, at which point having done nothing wrong, he placed his hands in his pockets and continued walking. When police spotlighted and threatened to tase him, Tario ran. Neighbors tried shouting and warning police that Tario was autistic but they wouldn’t listen. His mother came running and repeatedly asked them to stop, even demanding they arrest her instead, shouting if anyone was at fault, she was. They used a taser on him, multiple officers fell on him while he was face down writhing from the taser shocks. Video shows Tario crying out in pain and calling for his mother." 

(click here for the full article)

And just this week, there is the need for a petition supporting an Autistic boy of colour who at 11 years old 

"was charged this fall by a police officer who worked on campus and convicted of a misdeamonor for "disorderly conduct"  for the mere act of kicking a trash can during a meltdown at school. When the same officer grabbed Kayleb to forcibly bring him to the principal's office after a minor infraction a few weeks later, Kayleb resisted by pushing the officer away- and was arrested. “He grabbed me and tried to take me to the office,” said Kayleb in an article written by the Center for Public Integrity (CPI). “I started pushing him away. He slammed me down, and then he handcuffed me.”" 

(to see and sign the petition, click here)

My son knows of the privilege he has as a white person. He knows the discrimination he faces as an Autistic person.

Now he knows the dangers of looking Autistic in front of police.

And all I can think is that it is all so very wrong.

Monday, April 6, 2015

Things about my Autistic kids you should be aware of this April

I'm not a big fan of the lists of things you should know posts. But I have seen a few upsetting and unsettling things being said around the place this week, and want to quickly address them. So here is a list to tell you some things about my kids that I wish more people were aware of. 

My kids are not sick, broken, tragic, contagious or burdensome.
Autism is not an illness, defect, tragedy, epidemic or burden. 
Autism is a variation in the way a persons brain works that has a genetic basis. My kids process emotional, social and environmental information differently than non Autistic kids and this can be disabling for them. This is not inherently bad or negative. 

There is nothing wrong with my kids. 
Yes, they have some significant challenges navigating a world that is designed for people who are not Autistic, but that does not make them wrong. 

My kids do not need to be changed. 
They do not “fit in” and that is OK. The do not need to appear normal to be accepted or valued. They are Autistic, will always be Autistic and should never be expected to appear anything different. 

My kids are individuals. 
They are not like all other Autistic kids.  
Just like non Autistic people, Autistic people have a variety of interests, strengths and challenges. Just because they are Autistic does not mean you can assume they like horses, are drawn to water, spend lots of time lining things up or have no empathy. Stereotypes are just as misleading when applied to Autistic people as when applied to anyone. 

My kids do not give me a hard time because they are Autistic. 

Being a parent is tough going, no matter who your child is. When my kids are struggling with something they are not doing it to inconvenience me- they are the ones having a tough experience. It is up to me to support them the best I can, with compassion and graciousness. 

Monday, March 23, 2015

Autism Acceptance 2015

If Autistic people were accepted we would not need Autism Awareness Month.

Yes. That is what I said. 

If Autistic people were accepted we would not need Autism Awareness Month.

We live in a  society that does not value diversity. 

We live in a society that disables people with its intolerance of difference.

We live in a society that honestly believes the best thing to do for an Autistic child is to make them look not Autistic so that they do not get teased or bullied.

Conform. Fit in. Submit. Perform. 

These are the messages my children receive day after day. One month of awareness talk is not going to change that. In fact, it reinforces it. 

"We are aware you are here and you are different, and we see you as a burden to be endured, problem to be dealt with and a puzzle to be solved."  

That is the message Autism Awareness Month sends to Autistic people. 

If our society valued diversity Autistic people would not be seen as a burden. 

If our society encouraged and celebrated difference Autistic people would not be treated like a problem. 

If our society would condemn bullying instead of encouraging the disabling of people in minority groups more people would be willing to speak against the rhetoric of puzzle pieces and mystery. 

If Autistic people were accepted we would not need Autism Awareness Month.

The tricky part of this conversation is that there are people who really do believe that awareness helps. They have very good intentions. They want to do what is right. I can understand why they feel defensive when they first hear someone say that awareness is neither helpful or enough. To be honest, I did a bit of a double take the first time I saw the idea too. My response was to read the dictionary! I love words.... and am always interested in defining and understanding (call it a special interest, if you will). Reading the definitions of awareness and acceptance showed me clearly why awareness is not helping Autistic people. 

awareness |əˈwɛːnəsnoun [ mass noun ] knowledge or perception of a situation or fact
acceptance |əkˈsɛpt(ə)nsnoun [ mass noun ] the action of consenting to receive or undertake something offeredthe process or fact of being received as adequate, valid, or suitable

Autistic people are here with us in our shared society. They are offering themselves unreservedly and in all their diversity and beauty. They are asking us to look at them and receive them as adequate, valid and suitable, and that we do that without condition or expectation that they will change to suit our whims. It is not a big thing they are asking. Just acceptance. Just exactly what you and I are privileged to receive already. 

And I say yes. I am not happy to merely have knowledge of this situation. I choose to accept what I am being offered. It is after all a gift when someone offers themselves to you. They are making themselves vulnerable and open to hurt. So far our society has dished out a lot of hurt to Autistic people.

I say yes. I choose acceptance. And I say to my Autistic children: You are adequate. You are valuable. You are suitable. You are wonderful just as you are. I love you.

I do say yes. I choose acceptance. And I say to my Autistic friends: You are adequate. You are valuable. You are suitable. You are wonderful just as you are. I am glad you are here. 

And I say again,  If Autistic people were accepted we would not need Autism Awareness Month.

Will you celebrate Autism Acceptance Month with me? 

image: a yellow rectangle with a black line border.
On the right of the rectangle is a photo of a fair skinned, blond haired and blue eyed child in front of a tree trunk.
On the left of the rectangle are the words-
If you would ACCEPT ME as I am there would be no need for all this "Autism Awareness"

Sunday, March 22, 2015

A letter to my Autistic son

Dear Son,

It is almost April again.

Almost that time of year when it is cool and trendy to be *aware* of Autism and to support that awful Autism Speaks driven money grabbing "light it up blue" campaign.

Almost time to brace ourselves for the inspiration porn filled social media feeds telling us how amazing "people with Autism" are despite all their suffering, and the equally icky opposite message about how Autism is a puzzle that causes so much desperation in the lives of the entire families it damages.

And I am cringing because those are not messages I want you to hear.

I do not want you to hear that people think of you as a puzzle or problem to be solved.

I do not want you to feel that to get where you want to be in life people will need to be "aware" of you.

I do not want you hear that you have ruined my life.

I do not want you to feel like you are a burden to society that needs to be addressed.

Because you are none of those things.

You are not a problem, a puzzle, a cause, a disaster or a burden.

You are a person. A valuable and valued human being.

You are my child, who I love unconditionally.  You are the child I longed for, the baby I wanted, the toddler I cherished, the growing person I enjoy being with, the young adult I happily advocate for and am so very proud of.

If I could protect you from the world that would see you as anything other than wonderful, I would. But I can't. It is there.... big and ugly and unwilling to hear the message of acceptance. They prefer to categorise and distance and fear. I can't protect you from that. All I have are my words and my actions to tell you that to me you are amazing just as you are. I hope you hear me. And I hope it is enough to overcome all the damage those other messages can cause.

I love you.

image is a green leaf with the words of the last paragraph of this post over the top of it 

Wednesday, March 18, 2015

The autism community and the Autistic community

In the ongoing dialogue around the needs of Autistic people, I see a pretty consistent divide. 

There is a group of people saying that Autistic people need to be put in therapy or treatment to ease their symptoms, and that it would be good if there was a way to cure or prevent Autism.

And there is a group saying they don't and it wouldn't.

There are also two phrases I see consistently.

autism Community.  Autistic community.

Generally speaking, those who say Autistic people need to be put in therapy or treatment to ease their symptoms, and that it would be good if there was a way to cure or prevent Autism are part of the autism community.

Generally speaking, those who disagree are part of the Autistic community. 

This next bit is important.

Parents, please realise that you are part of the autism community.
Your child is part of the Autistic community. 

I mention this because I keep seeing people who are part of the autism community speaking out as if they have the right to say what the Autistic community needs. I wish they would stop. You don't get to say what a group of people needs unless you are part of that group. The only time it is alright to speak on behalf of a group of people is if they have told you what they want and asked you to speak with them. There are allies who speak with the Autistic community, but they are still not part of the Autistic community because they are not Autistic. They are allies, yes, but they are still part of the autism community. 

I am part of the autism community.

Last I asked my Autistic kids and my Autistic friends they do not want to be cured. They do not want to be fixed. They do not want to be expected to appear "normal". They do not want large organisations who don't listen to them to speak for them. They do not want parents who agree with said large organisations to speak for them. 

So, as part of your community, Parents, I have something to say to  you. 

There is a pretty good chance that your child will agree with the adults of the Autistic community when they grow up. 

So before you go around spouting the truth of what the autism community thinks,  and patting each other on the back for your advocacy, you might be wise to first listen to what the Autistic community wants. 

Your child is a part of that community. 

As they get older they will know you have actively stood against their community. 
They will know you stubbornly refused to listen.
They will know you were part of what causes the problems they face. 

Parents, as part of your community, I have something to ask you. Please, stop framing what you believe the autism community wants as what is right for the Autistic community. 

Autistic people can do that for themselves. 

Sunday, February 22, 2015

Measures of Success

There are a lot of definitions of success, and consensus over what is successful seems elusive. As a society, at least from where I sit, it looks like while we consistently see some things as signs of success, we do acknowledge that different things are regarded as measures of success in different situations. But I also see evidence that there are some things that are definitely not considered to be signs of success. 

For example, I'm pretty sure that no one sees it as a sign of success if you rely on Centrelink payments as the large part of your income. I'm reasonably sure that people who have managed to acquire a mortgage to buy a house are considered more successful than those who rent by many.  A lot of people seem to think that if a child struggles at school they are not seen as being successful. There are levels of stigma applied all over the place in our society that determine how successful a person is perceived as being by those around them. And then there is the whole commentary around success and effort.... "you worked so hard- you deserve every success"..... well meaning, but loaded with assumptions and implications. 

I've been thinking about this sort of thing lately, as I stay home - in our rented house - educating two of my children who just don't manage well at school, relying on Centrelink payments to get by. Perhaps my reflections are based on incorrect assumptions on my part. Maybe the way I think people perceive me is not accurate. Maybe people just don't know things about me as they form their opinions. Sometimes I am aware of this as I am told by someone that they think people on welfare should be assessed more harshly.... and I realise that person doesn't realise I am "on welfare". Or I hear conversations about how irresponsible people who have large families are. Or my least favourite combination of judgement, which goes something like.... people who have heaps of kids with disabilities and can't even afford to buy their own home are raising kids who don't have a hope of amounting to anything. 

Ironically, at the same time as there are others who would judge me as unsuccessful, there are some who look at my writing and think I am successful in some ways. I am sometimes told I am a great parent, when- to be completely honest- I hardly ever feel like what I think a successful parent is! 

So much hinges on our perceptions, our values, our ideals. What we use to measure success becomes such a subjective issue. Yet we still persist in doing our best to classify, clarify and categorise ourselves and each other.

Being aware of this, as I stay home - in our rented house - educating two of my children who just don't manage well at school, relying on Centrelink payments to get by, I find myself asking some tough questions. 

Are we as parents defining success the right way? Are we expecting the wrong things from our kids?

See, I don't see my kids who do attend school as any more successful than my kids who are being educated at home. And I don't perceive that they have any more or less chance of being happy, productive and decent human beings than anyone else. But is that success? 

I don't perceive myself as being any less successful than those I know who are paying off their own homes simply because we made a decision early on in our lives not to commit to home ownership. But is that success? 

I don't see myself as being more successful than my husband because I have completed more tertiary education than he has. But is that success? 

I don't see my Autistic kids who use verbal language to communicate (most of the time) as more successful than an Autistic person who uses typing or picture boards to communicate. But is that success? 

What is a good measure of success? 

Having something? Being something? Doing something? Being perceived as something? Giving up something? Not doing something? Not being something? Not having something? 

Or are we simply successful if we set out to achieve something .... anything...  and we manage to achieve it? 

Or......  maybe success is not any of that. Maybe success is not even a thing! In the grand scheme of things who is to say "success" is even important? 

Maybe instead of seeking success we should be striving for progress, or growth, or change, or simply contentment. 

Might we be wise to stop looking for things like speech and other developmental milestones as measures of our childrens- and our- success? 

Might we be wise to stop looking at things like conformity of behaviour and appearance of "normality" as measures of our childrens- and our- success? 

Might we be wise to stop looking at other peoples opinions about our families as measures of our childrens- and our- success?

This image is an ageing and flaking yellow painted fence with words printed over the top of it.
The words are taken from the paragraph below the image. 

Our Autistic children are not the same as other people. There is nothing wrong with that. They are not the same, and they should not be expected to appear as being the same. No one should be attempting to apply the same measures of success to our Autistic kids as they do to non-Autisitc kids, unless their idea of success is to be alive and to be growing and happy. As parents it is our job to realise this, and to advocate for our children accordingly. Just the same as I reject others opinions of my success, I must stand up for my children and show others I reject their expectations and the measures of success they try to impose on my kids. No one should spend their life trying to meet other peoples arbitrarily determined unrealistic and unreasonable expectations of them. 

By advocating for a change in the measures of success applied to Autistic people I hope I am empowering my children to do the same, and in some way making their lives easier.