Friday, May 22, 2015

Barriers to learning for Autistic people and how you can help

Autistic people process information differently than non-Autistic people. This can cause barriers for them in many environments. Today I have been thinking about how this works in classroom learning environments. I have made up a couple of images that I hope will help people think about this and understand how difficult school (and other places) are for Autistic people to navigate.

I am happy for people to share the images, but please credit and link back to this article, or to my Facebook page when you do. If you wish to print the images or otherwise reproduce them for your own use, please email me (michellesuttonwrites@gmail.com) and request permission. I will be able to provide you with a PDF to use. Thanks. 

Following are the images, a full version of the text in the images is below each one. The brain image I used was sourced on Freepik.com. 

You can click on the images for a better look at them. 





Barriers to learning for Autistic people in classroom settings

I hear:
the sound of my pencil scratching on paper,
people moving,
people writing,
people breathing,
people opening pencil cases,
people chewing,
clocks ticking
noises from outside the classroom,
noises from the classroom next door,
students talking,
teachers talking,
teachers talking lots of words all at once,
fans spinning, heaters blowing,
other people laughing- sometimes at me,
and I can’t selectively filter what I hear to hone in on what you think I should be attending to


I feel:
my clothes,
my shoes,
the rough desk,
the hard chair,
the contrast of textures on my desk- book,
papers, pens, pencils,
small variations in temperature,
bumps of other students on my body as we move around
my hungry tummy and full bladder
and I can’t simply ignore things that I feel that bother me


I see:
posters,
art work,
things on desks and shelves,
people moving around,
flickering of fluorescent lighting,
contrast between light and shadow,
what is happening through windows and open doors,
and I find it very difficult to concentrate on just one thing when all these other things are present


I smell:
cleaning products,
other peoples food,
other peoples perfume,
other peoples deodorant,
other peoples hair products,
other peoples make up,
markers, glue, paint, paper, pencil shavings
and these things can make me feel physically ill


You expect me to:
sit still, be quiet, stay “on task”, concentrate, be polite, speak when spoken to, make eye contact, not stim, only eat drink and use the bathroom when you say I can, be engaged all day with minimal breaks, use socially appropriate words and gestures, get the answers right, laugh at jokes, not cry or look upset, fit in, figure out what you expect of me when you don’t explain it in a way I understand, play the way the other kids play, look normal, be neat
and I am already overwhelmed trying to process what I hear, see, smell and feel





You can help Autistic students learn by
Providing audio support:
*reducing the overall noise from machinery and appliances in the classroom and school
*asking other students to be considerate with volume
*providing ear defenders
*providing opportunities for students to listen to music via headphones if they find it helpful
*and always asking the student what accommodations they would like provided to help with audio overload

Providing tactile support:
*allow students to remove shoes and outer layers of clothing if they want to
*provide alternatives to traditional table and chair learning stations
*ensure the learning station is uncluttered and give students a choice of implements to use for learning activities
*keep the classroom environment at a steady temperature as much as possible
*ask students to be aware of personal space and teach them how to move around considerately
*provide frequent bathroom and snack breaks
*and always asking the student what accommodations they would like provided to help with tactile overload
Providing visual support:
*keeping the classroom environment simple and uncluttered with resources not in use away in cupboards/ drawers and minimal visual distraction
*keep the room well lit by light sources that do not flash, flicker or strobe
*provide sunglasses for use in the class room
*shut doors when possible
*minimise movement of people walking around when students are expected to be concentrating
*and always asking the student what accommodations they would like provided to help with visual overload

Minimising smells:
*find cleaning products that do not have a strong smell
*make sure rooms are well ventilated
*ask people to be considerate of others when applying products to their bodies
*use equipment that does not have a strong smell
*do not expect a student who has smell sensitivities to sit close to other people if they are uncomfortable doing so
*and always asking the student what accommodations they would like provided to help with smell overload

Adjusting your expectations:
Making changes to the physical environment will help, but getting to know your student, asking them what help they need and really listening to them is what will make the most difference. Autistic students can benefit from moving around, fidgeting and doodling while engaged in learning tasks. Accommodation like a visual schedule and extra lead time before transitions can also be helpful. And above all always ask the student what accommodations they would like provided.

Autistic students are not the only ones who can experience sensory processing challenges. Providing these kinds of supports in your classroom will benefit many, if not all, students.



Thursday, May 14, 2015

[Amazing Adventures] Acceptance, Love, and Self-care: #AutismPositivity2015


Acceptance. Love, and Self-care: #AutismPositivity2015





An interview with MissG, an Autistic 7 year old... sort of

Do you think it is important to look after yourself?  
Yes

Why?
I'm not answering

Can you tell me some ways you look after yourself? 
Ugh.... I'm not answering your questions. 

Are you feeling stressed right now? 
mmm hmmm

So, is not answering my questions a way of looking after yourself because you feel stressed?
mmmmmm

Is it ok if I just write down some things I know you do to look after yourself, and put that in the blog?
yeah


For the record, MissG had agreed to answer some questions for this article when I asked her yesterday, but when it came to doing it today didn't want to. She is a bit out of sorts lately, we've had a really busy schedule for a few weeks, she is tired, overwhelmed and stressed.  I'm glad she agreed to let me share some things about how she looks after herself, though, because it is something we focus on a lot in our house and she has some great strategies! Everything I have written below I have her permission to share.



Caring for herself by not talking

MissG does speak to communicate. Most of the time. Sometimes she refuses, as you saw above. She is learning to recognise when conversation, and the associated mental processing energy, is too much for her. Unless it is an issue of safety for some reason, we do not discourage her from retreating. As she gets older we will explore whether typing to communicate when speech is difficult is an alternative for her. Right now she finds writing very difficult, so sometimes we use the feelings book she made herself. 


Caring for herself by stimming

MissG stims by licking her lips and the skin around her mouth when she is stressed. We have never discouraged her. Sometimes however her stimming can cause damage to her skin, so we have talked about looking after her skin. MissG initially chose to do that by applying a soothing barrier cream to her skin when it felt sore. More recently she expressed a desire not to lick all the time because people had started to comment on her skin looking dry and red. She had her own suggestion for a replacement behaviour. She said,"When I don't lick I feel bitey. I know I can't bite other people, so I can bite my finger. But that can hurt, so can you get me some gum to chew?" And a few days later, on the way to the hair dresser, "Can we get some mints? I will need to sit still, but it will be hard because she will touch my head. Some mints will help me feel better." Gum and mints are now always in my bag, along with the cream she uses. MissG still stims by licking, but now there are alternatives that  she has chosen when she wants to use them. 


Caring for herself by getting help with sleeping

MissG does not sleep well. She has a lot of trouble getting to sleep and usually wakes at least twice a night. Not sleeping well adds to stress. When I asked the Paediatrician about this, he called it "Sleep Initiation Disorder" (meh!) and said some Melatonin might help. MissG's sleep disturbances are only really a problem when external things impose their routines on her, for example when she needs to be at swimming lessons earlier in the morning than she would usually wake, or if we have an appointment to keep, but because she is homeschooled she can usually keep her own sleep schedule. I have noticed though that after a few months of going to sleep "late" and waking "late" that MissG begins to feel stressed and overwhelmed more frequently. So, we have talked about it, and come up with a system that works well for her. Usually MissG chooses when to take Melatonin to help initiate sleep. She will usually choose to take it 2 or 3 nights a week. If she or I notice that she is going to sleep very late regularly, or if she is experiencing overwhelm more often than usual and we can't see any other obvious reason for it, she will take Melatonin every night for a 2 to 3 month period to help her body reset its circadian rhythms. Generally about 2 weeks into this period of nightly use both she and I can see she is feeling better overall. After about 6 weeks I notice MissG begins to tell me she doesn't want to take it anymore, because she feels she sleeps differently with the Melatonin and once she is not overtired all the time that feeling is not nice, so we negotiate how much longer she needs it to complete the reset period. She is never forced to take it.


Caring for herself by being in control of decisions about her body.

This is the key. I hope you noticed it in all the above points. 

"she refuses" "we do not discourage" "her own suggestion" "alternatives that  she has chosen" "come up with a system that works well for her" "is never forced"

MissG's body is hers and hers alone. She makes the choices about her self care. She is in control. So, while this blog post has not turned out anywhere near the way I had planned, I am not concerned at all. My role as a parent is to present options for her consideration when her 7 years do not give her the experience to know what all the possibilities are. My role is not to impose my desires on her. I guide, I recommend, I support, but I do not choose. This is so important in helping MissG become her own best advocate. 


Having control over the choices made in the care of her own body is the most important thing for MissG to become confident in as she grows up. She will be a disabled adult, and my advocating for acceptance, love and self-care, with her right to be in control and make her own choices, is one of the most powerful gifts I can give her. 



image: An expanse of grass with large leafed plants in the background at the top of the image. In the top right corner is a fair skinned child wearing black pants and a dark pink shirt, who is running toward the camera and flapping their hands. In the top left corner are the words "fb / amazing adventures autism". At the bottom of the image are the words "She will be a disabled adult, and my advocating for acceptance, love and self-care, with her right to be in control and make her own choices, is one of the most powerful gifts I can give her.  Michelle Sutton"





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.


Morénike:
"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)

Kerima:
"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.
Mum.

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