on stereotypes and perceptions

This article has been moved to respectfullyconnected.com

http://www.respectfullyconnected.com/2015/11/on-stereotypes-perceptions-and-how-easy.html

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.

Tips for getting through the holiday season

Holiday season can be really demanding. Lots of events to attend that are noisy, bright and crowded. In Australia, the Christmas season is at the end of our school year, which is also a stressful time as school classes are out of routine, everyone is tired, and the weather is heating up. In the past for us this has meant an increase in stress and overload related meltdowns (and not just for the Autistic family members!) as we all struggle to keep up. 

Over the years we have learned some strategies in our family, purely by trial and error (my error, usually!) in most cases, that help us all during the holiday season. So this post is all about telling you the strategies we use to manage the challenges of holiday season events, in the hopes that some of the things we find work will be helpful for you too.

Strategy 1:  Say no to stuff

There is a lot on at this time of year. You do not have to do it all. If an event is something you know you or your child will not enjoy, it can't be adapted to help accommodate yours or your child's needs or if it presents safety concerns- say no and don't go. 

Strategy 2: Make your needs clear to those you will be spending time with

There is no need to apologise for this to your host or tread softly when telling them what you and your children need to be present and enjoy your time there. Everyone has a right to have their needs met, even if a little more effort is required for some than others. For us, one thing that really helps is to have all the essential activities of the visit over with early on in the event, so that if we need to go we can and we won't have missed out on things. In practical terms for our family this meant that when we went to my parents place for a Christmas celebration we asked to have the main meal served immediately when we arrived and the presents to be opened straight after that.  Those two things done early in the visit meant that we were free to go whenever we needed to. 

Strategy 3: Ask your host for a schedule of what will be happening so you can let your kids know what to expect

A lot of the anxiety my kids feel about going to events is not knowing to expect. If I can tell them what to expect and they know the venue a large part of their stress is removed. It also serves to help me know when I need to be most available to support them because I have advance warning of when things are likely to be loud or busy or otherwise challenging. 

Strategy 4: Set up a designated quiet place at the venue and show your child where it is so they can escape if they need to

This needn't be a big deal. A quiet corner in a bedroom is enough, as long as your child will be comfortable there and as long as others know that if your child is there it means they need some time alone and should not be disturbed. Make sure you show your child where it is and tell them they can go there if they need to be alone. Doing this has helped my daughter attend 3 recent events meltdown free, event though they were things she would usually find overwhelming. At one of those there was no room available for a quiet spot, but we took a very small pop up play tent and set it up for her in a quiet-ish corner of her choosing and it was enough- she could go in there and no one could see her and she couldn't see them. She used it a few times through out the evening and avoided becoming overwhelmed by deciding for herself when and for how long she spent time in there. 

Strategy 5: Bring your child's favourite soothing item and favourite food and let them have access to it

For us, this is often the iPad. Sometimes it is a fidget toy. Very occasionally it is a soft toy or a plastic dinosaur or horse. Whatever works. If your child has an item with them they find soothing and distracting it can help them recanter when they feel stressed. It can also be a good idea to bring some of your childs favourite foods. Trying new food can be stressful, so having something familiar to eat can reduce stress. When my daughter was younger I took her favourite crackers, dip and cheese everywhere with us so she would always have something to eat. We also found that chewing really crunchy foods and sipping through a straw helped relieve anxiety for her. 

Strategy 6:Leave "early" if you need to

My kids have some definite "tells" that they have had enough. I bet your kids do too. My experience is that if someone has had enough, they become less tolerant, more likely to become rude and difficult to be around. I know I do, and if you are honest, I think you'd say you do too. For an Autistic person "enough" can happen sooner than for a non-Autistic person, simply because of the work they are doing to process the sensory input and social interactions. And that is OK. If you've had enough in a social situation you remove yourself from it, right? So, do that for your kids too. If you can see they've had enough, leave. Take them home, let them relax. If it is impossible to leave immediately, make a plan to leave, tell your child what the plan is and stick to it. Let them stay in their designated quiet place until you can leave if that helps them. 
Edit: Alyssa left a comment (you can read it below) and made a really good point..... make sure the kids know they can tell you they need to leave. Scroll down to read her full comment. 


What do you think? Will any of these be helpful for you and your family? I'd love to hear from you if you try these strategies for the first time.... let me know how you go. You can also get in touch to tell me about strategies you already use that help your kids- someone else is bound to find them helpful too. 

Happy holidays! 

This is why I advocate

This. This is why I advocate. This is why I go on and on and on about the right supports. This is why I get all worked up about accepting people who are different than us. 

click here to watch the video

My kids have another difference than these kids, but they live in the same society- one that holds such strong prejudices that these kids see themselves as different and therefore less and bad and ugly simply because that is what society tells them. This is horrifying. 

This is why I advocate.  Because when I fight for "disability rights" I am really fighting for human rights. Because when I stand up for justice for my kids I am also working towards making a change that will support all kids who are treated unjustly simply for not fitting the "norm". 

This is why I advocate. This is why I will never stop.




*this blog entry is a copy of one I published originally at different kinds of normal

Things I didn't know

This post has been moved to the Respectfully Connected blog

http://respectfullyconnected.blogspot.com.au/2015/11/things-i-didnt-know.html

What does "Awareness" get us?

***I live in Australia. There are things that are common knowledge in The USA, where some of my readers, and a lot of my online friends live, that are little known here, even in the Autism Community. This post may contain information that a lot of my Northern Hemishpere readers already know, or even know more about than I do. If I have anything wrong, please let me know! I am trying to help my Australian friends discover some of the issues that exist so we can try to learn from others experiences and guard against replicating undesirable situations.

Since 2007, April 7 has been the United Nations sanctioned World Autism Awareness Day. This year, UN Secretary General Ban Ki-moon said, "This international attention is essential to address stigma, lack of awareness and inadequate support structures. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential. "

There are many large organisations that have joined the bandwagon, so to speak, and now acknowledge and even celebrate Autism Awareness Day. Some of them now run Autism Awareness Month activities, and use the time as their major fundraising event for the year. But there is a problem. You might wonder what on earth can be wrong with raising awareness about Autism and raising money to support families affected by it. On face value, the answer would have to be "nothing". But unfortunately, not everything is what is seems on the surface. To show you what I mean, we need to talk about Autism Speaks. Autism Speaks is a large "not for profit" organisation in the U.S. that instigated the "Light it up blue" campaign that many people associate with World Autism Awareness Day. In fact- the campaign has been so successful, that most people don't realise WAAD is a UN initiative. A.S uses "light it up blue" as a major fundraiser. I'll start with a quote from Nick Walker, an Autistic adult,

"Don't "light it up blue" in April!

"Light It Up Blue" is an "awareness" campaign by Autism Speaks, an anti-autistic hate group dedicated to preventing the existence of people like me.

If you take part in the "Light It Up Blue" campaign by displaying blue lights in April, or promoting the campaign with "Light It Up Blue" images and profile pics on Facebook, you're not doing anything to help or support Autistic people. Instead, you're showing support for a corrupt and bigoted organization that has a history of maligning us, silencing us, excluding us, and harming us. An organization that openly declares that its goal is to "prevent" us."

Huh? What is he talking about? A while back, I did some reading to find out what the fuss is in the Autistic community. I'm not going to spend a lot of time explaining all the reasons why I would never support AS. If you want to learn more google the phrase "what is wrong with Autism Speaks?" and see what comes up. Here are a couple of things I found when I did that search-




I found this flyer here on the Autistic Self Advocacy Network website. It's hard to read in this image, so here is the pie graph summary of who AS spends their money. .......

4% of their funds are spent on Family Services- that is the part that supports Autistic people.

44% is spent on research.... that is a worry for an organisation that openly says they are " dedicated to funding research into the causes, prevention, treatments and a cure for autism" because when Autism is a part of who you are and how your brain works, the idea of the organisation claiming to be there to support you actually wanting to prevent or cure you is pretty scary really!

Here is another link for those of you who have some time on your hands and want to do some more reading on this... https://en.wikipedia.org/wiki/Talk:Autism_Speaks/Controversy_links. There are some fantastic articles linked here that explain the controversy better than I could ever hope to.

If you would like to know what many Autistic Adults think of the organisation that claims to speak for them and claims to be there for them, read this by Alyssa of Yes, That Too.

Lastly, on Autism Speaks, if you want a really good, but short summary, The Caffeinated Autistic can help! Click here.

Now, in Australia we don't have Autism Speaks (although they are conducting research here, and did happily back up and promote the Australian organisation Autism Awareness' efforts to "Light it up blue" this year), but we do have governments that are taking away disability support funding from schools, and we suffer our fair share of what I now think of as "tragedy talk" (examples?... Autism is a Tragedy.... 1 in 88 *suffer* from Autism..... Autism is an epidemic.... etc.) Daily newspapers report sensationalist stories, fuelled by newly announced statistics, and media statements by organisations like AS. On April 2 major newspapers ran stories written by parents of "children with Autism" about how hard life is living with Autism and how little support there is for Autistic people in our country. Some of these stories I found depressing as thy just talked about the hard stuff. A couple of them were good, and it was clear the parents were attempting to put out a positive message.

But here is the problem with "Awareness": the media wants to tell the story so they can sell the story. They make people aware that Autism is hard by calling it a Tragedy, a Burden, a Struggle, and label it Heartbreaking. People will read that. The result of this is when I tell someone who doesn't actually know me or my family that 2 of my kids are Autistic they say [pause to put on compassionate face] "oh, I'm sorry. That must be hard" (or something similar). Which, although the person is responding in a way they feel is appropriate due to the information they have, is annoying because in our house Autism is not something to be apologised about.

More important to acknowledge than my irritation as a parent when people apologise to me that my kids are Autistic is this- When Autism is presented as a burden, a problem, and a tragedy the result is that Autistic people suffer.

Here is an example. On World Autism Awareness Day this year, ironically, an Autistic lady named Amanda was in hospital. She was being actively encouraged to consider NOT having a lifesaving medical procedure. You see Amanda is non-verbal and requires support to manage some of the tasks she needs to do daily so it was assumed that her life must be miserable and she would be better of considering allowing her life to end. Yes... really! Read here for more information about this situation. THAT is what "Autism Awareness" gets us.

This is not an isolated incident, either. Last year an Autistic man called Paul was denied the right to go on a heart transplant waiting list because he is Autistic. You can read his story here. THAT is what "Autism Awareness" gets us.

But that’s America you say. That wouldn’t happen here in Australia.

Really? In 2012 an English family was denied entry into Australia to take a job that had been offered because their daughter is Autistic which you can read about here. THAT is what "Autism Awareness" gets us.

In 2012 the NSW State Government removed Disability Support Funding from public schools resulting in most Autistic children in mainstream classes losing the support that was helping them succeed at school. You can read about these changes here. This change has impacted my family with both of my Autistic children now unable to receive funding toward providing them the support they found so helpful. THAT is what "Autism Awareness" gets us.

As Genral Ban Ki-moon says, "Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential. "

Here is another quote for you: ".......autism isn’t just a hole in the floor that people are tripping over, autism is a part of who we are!" That Autistic that Newtown Forgot

Autism is a neurology. It is not an illness. It is not a disorder. It is a part of who a person is. You cannot cure Autism. You can use genocide against it. You can eradicate it. But you can't cure it.

It is a horrifying thought to me that one of my Autistic children could be denied medical care that would be standard procedure for a person without a disability! It should be a horrifying thought to all of us that it could happen to anyone!

Autistic people do not need more awareness. They need people to accept them as they are, as valuable people with the same rights as everyone else.

We need to move towards acceptance of everyone, regardless of their neurology, so that all people receive the support, validation and recognition they need and deserve.

You might say that I am just arguing semantics here. I would reply that I believe there is a very important difference between awareness and acceptance because of the behaviour that results from each. Awareness results in all sorts of knowledge, whether it be fact or fiction, that doesn't actually help Autistic people. Awareness is a good start, but not a solution.

image from ASAN

This is Autism Acceptance

You might not have realised it if I hadn't pointed it out, but these photos are of Autism Acceptance.

Acceptance- the process or fact of being received as adequate, valid, or suitable

My MissG started Kindergarten this year. We did a lot of preparation for this, because MissG is Autistic and has Sensory Processing Disorder. We worked with the school to help MissG get used to the routines of the school, gave her practice being in the classroom, and moving around the school in a group, playing in the playground with lots of other kids darting around..... things like that. We focussed on her own safety by teaching her a procedure she could use when she is feeling stressed or experiencing sensory overload so she could go to a "hiding place" where she felt safe and could wind down a bit. We made sure she knew the ladies who work in the office because they are the ones who look after kids who need first aid. We made sure she was totally comfortable with The Principal because he would be the person who would intervene in an emergency. We made sure she knew who her classroom teacher would be and got to know her, so there would be no anxiety about who she would be with. [search "transition to school" using the search function at the top right of the blog if you want to read about the preparation we did]

We did all this with the willing help of the school, who showed us by their actions that they accepted MissG just as she is and are happy to welcome her into their school and do whatever she needs them to do to make school work for her.

And the school has continued to show that they accept MissG and do not expect her to change to suit them. I know this because of the conversations I have with her Lovely Teacher when we check in with each other to make sure everything is going well. I know that when MissG is struggling her Lovely Teacher makes sure she has extra time to process things, and that she is teaching the other kids in the class to do the same. I know that MissG's Lovely Teacher makes an effort to give MissG plenty of warning for transitions and when the usual routine has to be changed. MissG has her own special drawer in the classroom where she keeps some fidget toys and comfort items she can go to if she needs to do something to calm herself.

MissG's Lovely Teacher, The Principal, the Office Ladies and all the other staff in the school value my daughters uniqueness. They let her be who she is. They encourage her. They are proud of her achievements. The see her as adequate. They *accept* her.

I know this because of what happened at the Easter Parade. I posted the above photos so you can see it too.

That is MissG. Dancing. With a partner. In the middle of a group of about 80 children. To loud music. Without her ear defenders on. With a huge smile on her face.

See her? My Autistic daughter? Dancing! With a partner! In the middle of a group of about 80 children! To loud music! Without her ear defenders on! With a huge smile on her face!!

The same girl who 12 months ago could not go shopping with me without having to run away and hide to get away from the overwhelming sensory input. I stood and watched her in that huge group of kids, enjoying herself. Feeling safe. Being confident. And I cried. Happy tears.

I know that the school staff accept my MissG just the way she is because I stood next to one of the Office Ladies during the parade and she said she had been looking for MissG and was so happy to see her enjoying herself even in the middle of the bustle and the noise. I know that her Lovely Teacher values MissG just how she is because she was almost as teary as I was about how well MissG did during the parade. I know that the community we live in accepts my MissG just the way she is because a few people saw me with tears in my eyes and when I told them what they were for they cried happy tears too. They put their arms around this Autism mum and they shared my joy.

My daughter has found a place where she feels safe enough to just be herself and dance.

This is Autism Acceptance.  

Q&A 6: What would you change?

Time for the next question in my Autism Awareness/ Acceptance Month series. "If you could change one thing about the world your ASD child lives in, what would it be?" I asked this question because I have heard so many parents say that one of the hard things for Autistic kids is dealing with the world around them. Part of this I have put down to the fact that kids with ASD struggle to learn and understand social interactions and conventions. Part of it I have put down to other peoples reactions to Autistic type behaviours. So I was interested to see what parents would change for their kids. Here are the answers people gave-

The more weird the merrier- follow up on the Weird Movement

A while back I posted The Weirder The Better, in response to a movement I'd seen online encouraging people to be open about their differences as a way to help others realise they are not alone in feeling different and that it is OK. It's been exciting to see how far that movement has gone.

Racism and Autism... and Vulnerability.

How are Racism, Autism and Vulnerability related, you might be wondering. Let me explain my train of thought. I'll get to Vulnerability in a minute, but first Racism and Autism.....