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 parents 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 parents 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. 

Tuesday, January 27, 2015

on stereotypes and perceptions

You know the stereotype......  Autistic kids like lining things up. 

Well, one of my Autistic kids does, but this post is only partly about that. 

In my experience, the lining objects up stereotype is one of those things lots of people use to categorise Autistic kids as different, then either make light of it ( "he's so Autistic LOL! #youmightbeanautismparentwhen ") or complain about it ( " I'm so tired of tripping on all these lined up toys, will she *ever* grow out of this? " ). It's a form of othering. 

In my house, we break that stereotype. One of my Autistic kids doesn't line things up- never has. One of my non Autistic kids used to love lining up all the dinosaurs, in groups of same kind, and did so every day for about a year. So there's that. 

We find lots of the broadly accepted stereotypes don't fit in our house at all. 

I don't really like stereotypes. I don't really like othering, either. All they do is separate people from each other. I don't really like separating people based on perceived differences.

This post is about not being separated by our differences. 

This is a game set up by my daughters. One of them is Autistic and the other isn't. You can see there is a lot of lining up going on here.  MissG, who is Autistic, does like to line things up, and MissK, who is not Autistic, doesn't especially. Today MissK took MissG's lead and this is how the game went. They had a great time. They don't always play like this, sometimes they play in an array of things that look randomly placed and all over the room. Whatever works! 

Now, I'm not going to claim that MissK was purposefully accommodating MissG's preferences as an act of self sacrifice or anything like that. I don't know that it was a deliberate decisions. And this isn't a post about the stereotype of siblings putting up with so much, either. 

But it got me thinking how simple it is to just be. 

You see, so often people get caught up in the whole 'Autism is bad and needs to be fixed' dialogue. There is a perception that things like lining objects up is a sign that something is wrong and they get all worked up and worried that their child isn't progressing like they should or playing the right way. But, why?  What is wrong with a bit of object organising? Really? Why does it matter? Can we not just let our kids be? Can we not just let them play, and process and organise the way they want to? It's what we do as adults, and we get upset if someone disrespects us by saying we shouldn't. Our kids are people, just as we are, so why can't they have the same privilege? Why can't we drop the stereotypes and perceptions and just let our Autistic kids be, in their own unique ways?

this image is just a copy of the words in the last paragraph of this article, over a purple background

Friday, January 2, 2015

Autism and inclusion in the classroom

I was chatting online with an old high school friend a few weeks ago and he asked me about my thoughts on inclusion in the classroom. I responded that answering that would take me some time and I would get back to him. I've been thinking a lot about this in recent days, as during 2014 we took both MasterL and MissG out of mainstream schooling, opting for them to do their learning at home. The decision was made for different reasons for each of them, and the exact solution is different as well, with MasterL now enrolled in Distance Education and MissG about to be registered for Home Schooling (I will write more about the differences between those arrangements at a later time).

The short answer to the question of what I think inclusion in classrooms would look like is..... I have an idea, but I don't completely know. 

I can, however, tell you what it is not. 

It is not the current system we have in public schools in New South Wales, Australia. Both our Federal and State governments seem determined to remove funding and support for kids with extra support needs from the mainstream schooling system in our state. They have removed general funding from schools and specific funding for kids who are disabled. The result of this for our family was the removal of 3 of our 5 school aged kids from the public school system in one year. Those who did and would have qualified for individual support under the system that existed pre 2012 no longer receive it or are eligible to even apply because they are not "disabled enough", but the school system and the teachers in it are so stretched that they cannot provide adequate or appropriate supports for my kids.

To try to answer the question of what I think inclusion would look like I have been asking myself, How could this have been avoided? There is no simple answer.

The school staff did try. They, for the most part, were truly wonderful. They did their best to support my kids and make things easier for them. I understand how hard it is for them. I am a teacher myself. 
I know what it is like to have a student not coping. The room is not right, the environment is too much, the day is too long, the breaks are not frequent or long enough, the number of students in the room is just too many and the number of staff on the floor is way too few. Controlling, rather than empowering, becomes the focus necessary for survival and very few children can thrive under those circumstances. I know the feeling of helplessness and inadequacy when you just cannot help a child from within the constraints the system places on you as a teacher.  

Solving the issues I can see requires a change from the very core of the education system all the way out to the edges. It means new policy, new procedure, new minds to work on it and new funding to build it. It requires new research, new ways of thinking and new methods of training. It requires more teachers with better pay instead of funding cuts and pay deals that won't even keep up with inflation. It requires an investment that reflects the true value of society caring well for its most vulnerable. It requires an investment politicians seem unwilling to make.

Now, none of what I am saying is new to this discussion. Many others have said what I am saying. David Gonski and a team of people spent a number of years investigation and putting together a report of recommendations to the Federal Government. I read the report, and I hope Mr Gonski and those who worked with him will forgive my gross simplification of their work, but essentially what the report said was that there are some students who require more support than others and the schools those students attend need to be funded better if they have any hope of providing that support. Our current government wants us to believe they agree and so have promised to fund the first few years of the roll out of the suggested strategies hoping, I think, that no one will notice that all the really essential stuff that would make the implementation of the Gonski Report recommendations worthwhile won't happen within the timeframe they are willing to commit to.

But let's move away from the political and look at the idealistic stuff. What would a classroom that could successfully support my kids look like?

  • It would be well lit by natural light rather than fluorescent lighting. 
  • There would be numerous chill out zones that the students could access as they felt the need to. 
  • There would be minimal large group instruction time, with enough teachers and resources to provide small group and individual assistance for all learning experiences. 
  • There would be minimal bookwork expected, and an awareness of the difficulty many students have with text heavy learning leading to facilitation of hands on and interactive learning experiences provided as a supplement or alternative to text based learning as appropriate to meet individual needs.
  • It would look unorganised to an outsider, but be structured in a way that each students needs for routine were met and communicated in a way they understand.
  • It would involve mess and noise and play and laughter, even for older students.
  • It would involve teachers who are prepared to learn to be partners in education rather than leaders who must teach to the outcomes of standardised testing.
  • It would require out of the box thinking.
  • It would include students as planners and decision makers, with teachers as facilitators and collaborators whose goal is to assist rather than enforce compliance.
  • It would recognise that much of the value of schooling is not the actual academics, but rather the process of learning to learn and be confident and follow your instincts and advocate for yourself.
  • It would be flexible and responsive to students leadings and interests and ever changing needs.
  • It would be indoors and outdoors and real life hands on practical learning as much a possible.
  • It would allow for screen time as a coping strategy that is not frowned on.
  • It would allow for communication methods that do not require vocalising.
  • It would be gentle and encouraging and never coercive or manipulating.
  • It would assume children know themselves and their needs and would listen carefully.
  • It would value diversity in all its forms and would encourage children to genuinely be themselves, to confidently ask questions and explore answers, to see themselves as both learners and teachers, and it would hold sacred the right of each child to say no when they need to.

Those things in place in a classroom would begin to make public education more accessible to my kids and would be a start at making inclusive education available to all. You can call me unrealistic if you like, you can say I am asking too much. But I do think that it is pretty obvious that the current system is not working for many of our kids and if we aren't prepared to think differently about education we are only going to see things get worse. If we say we value education, and we want to serve all students well, the approach we are taking must change.

Inclusion is not something we can pull off by adding ramps and rails and lunch time library clubs and sticking kids in support units and saying we are trying our best. Real inclusion requires a complete change of approach that aims to not just add disabled peoples needs as an extra at the end of our planning, but incorporating them from the beginning. 

Diversity is valuable and failing to plan to include all students is short sighted and narrow minded. Until the policymakers and funding providers realise this and are prepared to act on it, we will continue to see children like mine failed by the system that is supposed to exist to prepare them to be their best. And that is something we should all be ashamed of.

Thursday, November 6, 2014

.... I dare you

Before you read this article, please be aware it contains a description of the murder of an Autistic child, discussion about murder of Autistic children and discussion about sympathising with the murderers. It also references the AS video "Autism Every Day". Some readers will find this article very triggering. 

Three years ago a mother wrote a blog post in which she explained all the ways in which she could relate to a video called "Autism every day".  In this video, a group of mothers explained how hard their lives are, how they grieve, how they have had to give up their dreams. One of them, while her daughter listened, told the viewers that she had seriously considered killing her daughter by driving her off a bridge in a car. 

And we are told to feel sorry for these mothers because their children are Autistic. 

Today the mother who identified with this video went for a walk with her Autistic son, and threw him off a bridge to his death. 

His name is London. He is 6. He has blonde hair and blue eyes. He reminded me of my son in the video I saw of him, with his serious smile and the tilt of his head. 

And we are told to feel sorry for this mother because London is Autistic. Was Autistic. 

Only I can't feel sorry for her. 

I can see him bewildered and screaming as he left his mothers arms and fell. I can feel his pain as he hit the water. I can see him floundering in the water, confused and dying.   

I can imagine you sympathising with me if I did the same to one of my children. 

But I cannot feel sorry for her.

So, tell me again how important it is to tell "the reality" about Autism far and wide so parents don't feel alone, and I will show you a mother who murdered her son after finding she wasn't alone in her desire to be free of her Autistic child.

So, tell me again how it is alright that she ended his life so he didn't have to grow up disabled. And I will show you my son, who I saw in London at the same age but who 10 years on is doing so well.... becoming an insightful and confident young man despite the world refusing to accommodate him. 

So, tell me again how raising "awareness" helps my children, and I will explain to you the ways I have to protect my children from the news so they don't have to see you all sympathising with parents who murder kids just like them. 

Go on. Tell me how hard her life is and how much she needed help because her blog said this and that and all the other excuses you can come up with to justify her horrendous actions against her son. Her precious son. Her little boy, so much like mine. 

Please do tell me again how I should walk in her shoes before I criticise and I will ask you- how do you know that I don't? 

Tell me you understand how she feels. And I will tell you that you will never know for sure whether I know how she feels, because even when I do have a tough day or week or month I will not put that information out there for my kids to read when they are older. I will not add to the popular story that kids like mine are a tragedy, are worth less than others, make my life difficult and stressful and something to be endured. 

Tell me that I must not understand because my child must not be as "severe", and I will tell you to just shut up and listen to me when I say that with all this talk you carry on with every single time one of my children's tribe is murdered by their caregiver you put my children's lives at risk. 

Go on..... tell me. I dare you.