Sunday, August 10, 2014

I'd like to be able to shop at Build a Bear in Australia

The #boycottAutismSpeaks movement appears to have had a victory this week, as Build a Bear Workshop in the USA has announced it has ended its support of Autism Speaks.

This is very exciting news!! 

I'd be even more excited if it meant I could go buy bears for my kids.

Unfortunately, Build a Bear Workshop in Australia supports Autism Awareness Australia, who are responsible for spreading the same message Autism Speaks does. Their video 'Autism Awareness' is full of fear speech and tells the world that my kids minds and personalities have been stolen by Autism, and compares Autism to caner diabetes and AIDS. You can view the video here- but be warned, it is a horrible video. 

So, until I know Build a Bear is no longer supporting Autism Awareness Australia, I won't be shopping there. 

You can read an article I wrote on this topic during April this year here. This article was picked up by The Huffington Post, and can be read here.

Wednesday, August 6, 2014

What if I told you I am Autistic?

Let's play devils advocate.

If I said I was Autistic, would that change the way you think of me?

Be honest. 

Would it? 

Right now, you think I am a non Autistic parent of Autistic children. So when I talk about my children's needs you think I know what I am talking about, because I look at things from the perspective of someone who is not disabled, can communicate and understand communication the same way you do, and who is capable of determining what is the best course of action. 

When I go in to my kids school to advocate for my kids I do so without fear of being told I am misunderstanding the situation. I can talk to the teachers as a peer. I don't get told I am over-reacting because of my own experiences and "issues" the way my Autistic friends do. 

When I write here on my blog, or for the Huffington Post, I don't have to deal with the same kind of dismissive comments my Autistic friends face when they write. I am afforded the privilege of being regarded as someone who knows what they are talking about and has a right to speak out because I have experience as a parent. 

If I was having trouble with some aspect of parenting my kids and I went to a professional for help, I do not have to worry that the professional will see a diagnosis I have as a reason to suspect I am not capable of looking after my kids and have me investigated by child protection authorities. Some of my friends do have to worry about that. 

I would like to think that all people are given the same respect. Unfortunately, the experiences of my friends tell me differently. 

So, if I told you I was Autistic, would that change how you see me and what I write?  Would my words still have the same credibility? Would my experience still be valid? 

I know you think the answer is that your opinion of me wouldn't change...... but, go on, be honest. Think about how you have reacted in the past to people you consider different than you, less capable than you, disabled in some way.....  think about it for a while...... take a few weeks to observe your own reactions. 

Can you honestly say that if I told you I was Autistic your opinion of me wouldn't change, not even just a little bit? 

Saturday, July 26, 2014

The letter I wish I had read when my children were diagnosed with Autism

From time to time, I notice a resurgence of the "letter to the new 'autism parent' from the experienced one" sort of articles in the blog/facebook world. 

I get why these posts are popular. When your child is diagnosed with autism, most people go through a period of feeling sad and overwhelmed. These letters tend to focus on that and give strategies to deal with the "awfulness" that life is with an Autistic child. 

However, I do not find the information in those articles fits my experience with my kids, or contains any particularly helpful advice for me. They never did. When I saw articles like these, even in the days soon after my first Autistic childs diagnosis, they left me feeling more unsettled.... definitely not encouraged or comforted. I figure there are others out there like me, so it is to you I am writing today. 

Dear Parent,

So, your child has just been diagnosed with Autism.

You might be feeling a bit stunned. You might be feeling overwhelmed. You might have known for ages but just had it confirmed. You might be relieved. You might be concerned. You might feel sad.

So, what do you do now? 

Well, you could go looking for a list of things to do. You could join every Facebook group you can find with "Autism" in its name. You could ask around and see what therapies everyone enrolled their kids in. You could seek the advice of other parents of Autistic kids. 

I did all those things. They seemed like the most sensible things to do given my child had just been diagnosed with Autism. After all, everything I knew about Autism was framed by the dominant belief that Autism is something that needs to be fixed in order for the Autistic person and their family to be happy. 

In hindsight, though, I'm convinced there were other - more helpful - things I could have done instead. Here is what I now think it would have been helpful for me to hear.

Autism is not a tragedy that requires immediate action. Nothing has really changed for you and your child with this diagnosis. They are the same child as they were yesterday. 

There is no rush. Despite what the professionals will tell  you, you have lots of options to choose from now. So, take your time. Have a look around and check out what is on offer, then choose what fits best for your child and your family. 

You know your child better than any one and you are capable of making decisions in their best interest.

Some people might be telling you that you have to act quickly to get services and therapies in place. They might be telling you there is no time to waste because the younger you treat Autism the better off your child will be and the more chance you have of them growing up to be normal. 

I would encourage you to slow down. Breathe. Think. And read.

Do some research. Don't just accept the dominant story you hear about Autism. When you are looking into therapies and strategies hold them up to a high standard, compare them to what you would find acceptable for a "typical" child and if the thought of subjecting a "typical" child to those therapies seems wrong, don't choose that for your Autistic child either. 

Research throughly. Read widely.

Most importantly read what Autistic adults have to say. I cannot stress this enough. Listening to Autistic adults changed everything for me. 

Listening to Autistic adults changed everything for me. 

And consequently improved my children's lives. Yes, you heard me right. 

Me choosing to listen to Autistic adults has improved my children's lives. 

There are plenty of Autistic adults out there writing things you will find helpful. 

Read Nick's essay What is Autism?
Read Landon's book I love being my own Autistic self

Read the words of AlyssaCynthiaIbbySparrowAmyNeurodivergent KHenry, and Michael.  

Seek out communities run by Autistic people. Communities like "We are like your child" and "Parenting Autistic Children with Love and Acceptance" (jointly run by Autistic people and parents of Autistic people). 

These people are your childs tribe and their words are your opportunity to truly understand your childs experience of the world. 

Listen. Read. Learn.

And hope. In the face of all the negative talk, all the tragedy rhetoric, all the despairing messages from "autism parents".... hope. HOPE. 

Things may be hard right now, but they will not always be. You will find your way. Your child will find their way. Spend just a little time with the sadness that follows a change of plans if you must, but move on to hope. You will be happier for it and so will your child.

With you on the journey,

Saturday, July 19, 2014


It's no secret that I do not like Autism Speaks

There is a virtual protest against Autism Speaks on at the moment....  you can find out more about it on the Boycott Autism Speaks Facebook page, twitter account, and website.

If you do not like the message of fear Autism Speaks spreads, you might like to join in too. Write a message and send in a photo- easy!!

Here are the photos my family and I have contributed.

Image is L, a smiling teenaged boy in a red shirt,  holding two signs. The sign on the left reads "There are things about me that would change if I wasn't Autistic and I like myself the way I am  #boycottAutismSpeaks.  The sign on the right reads " Autism Speaks, my life isn't miserable. My sisters life isn't miserable. My family's life isn't miserable, or, I guess they are only as miserable as any other family. Maybe you should ask Autistic people if they are miserable before you tell everybody that they are.  #boycottAutismSpeaks "
Image is of a sign on a wooden table. It reads "I told my 7 year old Autistic daughter that there was a group of people trying to stop Autistic people from begin Autistic. She gasped. I asked her if that would be good. She frowned and said "no". "Why?", I asked.  "Because I like being Autistic"  She doesn't want to be in this photo, but told me I should share this sign with all the people who want to stop AS from trying to change them.  #boycottAutismSpeaks "

Image is of K, a young girl with shoulder length straight hair and pink framed glasses looking at the camera with a feint smile, holding a sign that says "I love my brother and sister just the way they are.  #boycottAutismSpeaks "

Image is of me, a light skinned brown haired woman wearing black framed glasses and looking at the camera. I am  holding a sign that reads "My Autistic children are HAPPY and HEALTHY, SMART and FUNNY,  RESOURCEFUL, PERSISTENT and CAPABLE OF SPEAKING FOR THEMSELVES  They are not missing, merely existing, a burden, tragedy, epidemic, health crisis, or a national emergency. I am not in despair. Please do not believe Autism Speaks when they try to tell you otherwise.  #boycottAutismSpeaks "

Wednesday, July 16, 2014

When the mouth says something different than the mind is thinking

Tonight MissG was having a really tough time coping with the noise in the house, and was barely "holding it together" when a ball accidentally bumped her on the head. It wasn't a big bump to cause physical pain, but she was very upset. A outburst followed, and MissG took herself off to her room to be alone for a while. 

After a few minutes I went to her and asked if she would like a hug, as she often appreciates some deep pressure squeezes when she is stressed. She replied "leave me alone". So I quietly left. 

When she came out she wanted to talk to me. She asked me to sit with her, and she told me that when she said "leave me alone" she had meant to say "I do want a hug".  

I asked her if she often found herself saying things that weren't what she wanted to say. She said "no" and then she said "but when I yelled 'I hate you' to E when the ball bumped me I meant to say 'I am OK'." 

We talked about this for a while, and I told her I knew of other Autistic people who who find it hard to get their mouths to say what they want to say when they are stressed. I told her about writing to communicate. She asked what to do if you can't write yet. I told her some people use pictures to communicate. She thought about that for a while, then said she wanted to tell E she didn't mean to say "I hate you". 

After she went to explain to E and she felt things were restored between them, she asked to draw pictures of her feelings. 

We got out some coloured paper and she drew some feelings. I asked her if she wanted to use her pictures to help let people know what she wants to say if she gets stressed. 

She loved the idea, so we set about putting together a book of feelings for MissG to use when she has trouble making her mouth say the same thing her mind is thinking. 

 The images in this post are the pictures MissG drew of how she feels at different times. Each has a caption written by me so that the people MissG shows the picture to knows what she means by them. There is a "title page" that says "MY FEELINGS" and has a few different pictures of faces on it. There is a yellow page with a smiling face that says 'I am happy'. Then a green page that has a face with a small smile that says 'I am OK'. Next is a pink page that has a picture of a person with their mouth open and hands on their cheeks that says 'I'm so surprised'. Following that is a light brown page with a face with an open mouth and eyebrows raised that says 'I wasn't expecting that!'. Next is a purple page picturing a face with downturned mouth and two tears under each eye that says 'I am sad'. A grey page follows showing a face with a downturned mouth and eyebrows close to the eyes that says 'I'm feeling cross'. The next picture is on dark brown paper, there is a picture of two people and a cat standing next to a fish tank, one person looks happy and one looks sad, the caption says 'I'm feeling a little disappointed'. The last picture is on blue paper and is of a person with wide eyes and a flat line mouth, the person has big ears and is holding their hands over their ears, it says 'That was too LOUD'.

The pictures and information in this post are all shared with MissG's permission.

Sunday, July 6, 2014

Lack of services does not cause child abuse

This post carries a trigger warning for discussion about abuse of disabled children and people sympathising with their abusers.

Apparently lots of people think it is ok to feel sorry for people who abuse their Autistic children because there is a "lack of services" available. 

Let me be clear: I wholeheartedly disagree.

I am aware that my stance on this sounds judgemental to many, and that when I say what I think on this matter people are going to accuse me of not advocating for more services and tell me I don't understand how hard their lives are. I'm not going to get drawn into arguments, here. Unless you know me personally you don't know what I spend my time doing, or how "hard" my life is, so let's try to keep those kind of comments out of the discussion please. 

I honestly don't want to get into arguments on this either. I'm simply trying to let people know how their words sound, and present the idea that there are those of us here who do not agree with the dominant conversation surround these stories. Sadly, when people hear a view point that brings into question their opinions, and ultimately their privilege they usually get cranky. So I am prepared for the fact that as I speak about this topic, people will be angry with me. Unfortunately, I don't know any other way to say what I think than this. 

I do not think that lack of services causes child abuse.

In this post I am going to explain my reasoning. I am going to be as clear as I can, so there are (hopefully) no misunderstandings.

Abuse of a child is not excusable, justifiable, or more understandable when the child is 'aggressive', 'difficult', 'challenging', Autistic or otherwise disabled.

When an Autistic child is behaving in a way that most consider to be 'aggressive', 'difficult' or 'challenging' it is usually because of a communication difficulty or sensory challenge that needs understanding and support, not a 'behavioural issue' that needs to be controlled. 

Lack of services does not cause child abuse, a parents individual choice does. 

When an individual parent chooses to harm their child that is not solely a failing of the system, it is a failure of the parent to fulfil their role of loving parent. 

When people choose to use a breaking story about the abuse of an Autistic child as the platform to say more services to support parents are needed, it sounds like they are saying the abuse is justified by the lack of support they receive. 

When people choose to use a breaking story about the abuse of an Autistic child as the platform to say more services to support parents are needed, it sounds like they think the child is in some way to blame for their own abuse because they are 'aggressive', 'difficult', 'challenging' or disabled. 

When Autistic people hear others using a breaking story about the abuse of an Autistic child as the platform to say more services to support parents are needed, they hear the message that their parents would have been (or in some cases were) justified in abusing them, and that people would (or in some cases do) feel sympathy for their parents.

When I, as a parent to Autistic children, hear people using a breaking story about the abuse of an Autistic child as the platform to say more services to support parents are needed, I hear the message that if I abuse my children you will feel sorry for me, and I am deeply uncomfortable with that. If I ever wilfully harm my child I would hope people would speak out against my actions, not support them by saying it was because I didn't receive enough support. 

There is definitely a need for more support services for both Autistic people and their families, but in the wake of the reporting of a crime against an Autistic child is not the time to begin advocating for that to happen. The appropriate thing to do when a parent harms their child is to condemn their actions. If people believe more services are called for they need to advocate for that all the time and separately from stories of parental abuse. 

To finish, I am going to quote Zoe Gross, an Autistic adult.

"We should talk about supports that families need. We should talk about it when there are cuts. We should talk about it when lack of services makes it difficult for us to work, to go out in the community, to perform ADLs, etc. We should talk about supports and services until our faces turn blue - but NOT in connection to murders.

When someone kills their disabled child/children and our response is "this shows that we need more services," we as a community are taking people with disabilities hostage. The implicit threat is "give us more help or the kids die." Saying that parents are forced to kill their children by lack of services also destigmatizes child murder and excuses the parents' actions. The truth is that plenty of parents raise children with disabilities under all kinds of circumstances, without killing or abusing them.

Service provision is so so very important but we CANNOT use child killing as a launching platform for advocacy on this issue. It will do more harm than good."

Thursday, July 3, 2014

Sometimes I just want to cry

Can I be honest for a minute? Well, I'm always honest with you guys, but I want to tell you some honest hard sort of stuff. 

I love blogging. I really do. I usually don't care if a post gets lots of likes and lots of comments, because I work on the knowledge that it's worth writing if it makes a difference to just one person. 

I like begin an "activist"- pushing against the status quo. I think it is worth the effort to try to help people see things differently, maybe think about things in a way they haven't before. 

I saw a quote today- (sourced here)

Krishnamurti: “It is no measure of health to be well adjusted to a profoundly sick society.” 

and I hope that in some small way what I do when I write is to help people realise where society is sick and how they might be able to change that a bit in their part of the world. Most days I go to bed feeling like it is possible. 

But lately, I'm just feeling discouraged. Writing can be hard work. I put a lot of myself into what I write. I check with the kids to make sure they are comfortable with me sharing when I write about them.  I get a "bee in my bonnet" about things, and I try really hard to stand on the right side of justice and to support the Autistic community well. 

Then I look around the internet, and you know whose blogs and pages are the most popular? The ones with a feel good story every single day (whose life is actually like that???). The ones with lots of swearing. The ones that are funny or witty or just plain smartypantses (yes, that is a word).  Or worse, the ones who don't show much respect for their kids, and who would rather see their beautiful unique children be changed or 'cured'. 

When I see that, I get angry. I get a bit jealous, too. I start to want to see more likes, more comments, more people agreeing with me. 

Because I want to be heard. Because I want to know that all my effort standing up and saying something different than that message of tragedy and fear is making a difference. Because I want to be reassured that the world will be different for my kids than it has been for my adult Autistic friends. 

I can't guarantee that my efforts will lead to any of that. 

Lots of nights lately, I just want to cry.