My Perspective on Autism

I have been working through a course on Autism training for EAs in an effort to collect a few, final credits and learn more about Autism and ways to support and help Jake.  As it is winding down, we were asked to write about our perspectives on autism and if they have changed.  Mine really hasn’t, but I enjoyed and appreciated the opportunity to write about what I feel so passionately about.  It is World Autism Awareness Day and it is Autism Acceptance Month, so I thought I would share it here.


 

My perspective on autism is shaded deeply due to my deep love for my son who is autistic.

I have come to have a deeper understanding of how difficult it is to negotiate the myriad of students with ASD and the other students with special needs and it has increased my appreciation of the teachers and EAs who work with my son.

Things that have not changed for me have become more clear.  I understand that my role in my son’s life is to be his advocate, support, safe place, and cheerleader.  I understand that the position I have as a teacher grants me a very special opportunity to teach inclusion, compassion, and acceptance.  I will be a person who treats disabled people with dignity.  I will teach my students that they are valued, valuable, and worthy of dignity.  I will model how I hope the world will be for people with disabilities and autism.  I will talk about ableism and how we think and view those with different needs.  I will talk about the social model of disability and ways we can be more accommodating.

I have come to a deeper appreciation of how many scientists, psychologists, and experts in the field of autism have been wrong.  Wrong assumptions and wrong science have left deep wounds in the Autistic community.  Vaccines, lack of empathy, inability to learn, refrigerator mothers, parenting mistakes, are just the tip of the iceberg.  Treatment in the past has included electroshocking children, removing them from loving families, and using food and hunger to force assimilation.  It’s no wonder that getting an autism spectrum diagnosis so often leaves parents terrified and in tears.

I will talk about the negative stigmas that follow autism and why they need to be left behind.  I will talk about fear and presuming competence even when people do not communicate traditionally.  I will model patience and explain how behaviour is communication.  I will advocate for employment opportunities for adults and youth with ASD and ways to include adults with autism in our schools.  I will listen to the Autistic community, carefully and attentively, so that I can be able to stand with them.  I will encourage my son to embrace who he is and to learn ways to be successful without pressuring him to pass as neurotypical.

I need to be an advocate for neurodiversity, and the more I understand about it, the more confident I become.  I need to listen in order to participate in discussions meaningfully.  I need to be a support to other parents and educators as they learn and discover how many of our previous understandings about autism were wrong.

My perspective on autism is that it is human and it is beautiful.  It is hard, and it can be painful.  However, it can also be joyful, passionate, compassionate, and smart.  It is incredibly valuable.

Projecting My Ideas of Fun

I struggle with what to post on this blog. Daily, there are so many things that I could tell you, that I would really love to write about. My husband recently referred to it as “blog fodder.” I think that’s hilarious. But really, I struggle. The thing is, this is public. I want to share our stories, encourage and educate, but the reality of it is, I don’t want to embarrass my kids. One day they might read this, and I would hate for them to think that I was sharing things about them with the world that they would really rather I did not. It’s a tough one for me.

I want to be open, and they are the most important people in my world, so I need to be able to be open with them. At times I feel like I might be censoring some of our harder moments in an effort to protect them. I am okay with that.

However, it really is hard sometimes. I think this is something that is worth sharing, because when they grow up and have kids of their own, I want them to know that I get it. I love them and support them no matter what, and parenting is hard. There is so much to learn. I feel like I am self-reflecting a lot lately.

Recently I have tried to do things I thought were simple and fun, only to have Jake fall apart. My attempts to provide easy happy activities have turned disastrous. We planned to go to a nearby provincial park and have a fire, roast some hot dogs, and play outside for dinner. I wanted to be away— from people, from my house and our mess, and just relax and enjoy my kids. We have done this so many times, it felt like a guarantee. Just go out, relax, have some fun.

Well, we had not done it with three kids before. And we had not done it yet this spring. But I wasn’t worried. Not at all. Jake was tired, but we went to church. It went well. I had to pick up some groceries and my husband had marking to do, and so the boys went to their grandparents’ house for an hour while Penny napped. The plan was beautiful. I picked them up after shopping and we went home to load up and head out.

I don’t have any idea what went wrong first. Jake didn’t want to play in the sand. He didn’t want to play in the water. He was hungry. We toughed it out another fifteen minutes, no, ten, no, five, then headed up to make our fire. I forgot the boys’ water bottles. There was lemon water but that tasted funny.  There were cans of carbonated water but that was weird. There was Penny’s water, and so Jake finally settled on that. After tears. Many tears. Then the fire was too smoky. Then the hot dogs weren’t right.  Then he was tired and ready to go home. We toughed it out again, trying to regain some feeling of fun, of relaxation, when he was so wound and not fun. Argh! Miserable.

We finally left, and made it home for a pretty early bedtime. It wasn’t all bad. Penny loved it. Aiden loved the sand and the lake and was sulky after we left that part. I promised him I’d take him back.  Being in the trees and the air was wonderful.

I just didn’t want to skip doing something that we all loved just because Jake was falling apart. Partially because this was something he loved so much last summer, I really missed that. But the whole day left me drained and emotional. I can see now that there was too much going on in one day. If I want to plan a beach picnic, that needs to be the only real event of the day.

May 2015 738

Another night I wanted to plant the seedlings in the garden. The boys have been caring for these little plants and helped me plant the seeds. I wanted them to be a part of the next stage. However, Jake was not really up for it. Everything was bothering him. The sun, the dirt, the brother who was in his way.

Again, there were tears and whining.

Eventually he was yelling, “I am tired! You are not listening to me!”

And so we cut and ran. We went inside, and got ready and put the boys to bed. I felt like it was the only thing to do. I finished the planting myself and tried to not be disappointed.  I want to listen to him. I want him to know that I am trying. It’s so hard, when I feel like saying, just have fun! But it isn’t fun. Not for him, and therefore, not for me. Of course, we were up later in the night with a fever and that totally explains it all. He wasn’t feeling well. I’m sad for him. I’m sad for all of us! This isn’t easy!

Last year, a mom of an autistic student of mine was describing her struggles when taking her son to Disney Land. She wanted him to go on rides with her, so that he wasn’t missing out on any of the fun.  Some of those rides he adamantly refused, and she was reflecting on this with me. She said that it wasn’t right that she was trying to project her idea of fun onto her son, that he needed to enjoy what she enjoyed. It makes so much sense to me. Her son had more fun watching parades, shopping, and on some of the easier rides.

And yet, I just want to enjoy these things together. I don’t want to stress him out, I just need to figure out how to make sure that I am listening, prepping, and, I guess, doing more to make situations work for Jake.

Get the Word right

I have been doing a lot of thinking and processing.  It is so hard, way more emotional than I thought it would be, this knowledge I am gaining about my boy.  I seriously thought, I’m a teacher.  My husband is a teacher.  We have seen beautiful, intelligent autistic children thrive and succeed.  Having one of our own is no big deal.  I was so proud of how I handled it.  I thought I had my self under control.  But it is harder to deal with than I thought it would be. I wrote about how autism is not a disease here. I have written about how I feel about autism here and here. I really believe that is it not a negative, not an illness to be cured, but a positive.

At the same time, I was also scared when Jake was diagnosed. I didn’t know what to think, to feel. I felt conflicted, negative about this word, this autism. But as I come to accept it, know it, believe it, and believe in Jake, I have come to see it as a good thing. However, I feel like I need to spread this idea. There are so many families facing this diagnosis. There are so many kids struggling to find their way with autism. There are so many teachers, classmates, siblings and grandparents affected. All of these people need to see autism as a good thing if autistics are going to find acceptance.

So I am going to use that word. Autistic.  It’s a reversal of what I have been trained to use. As a teacher, I’ve been taught to use person first language. Person first language is important and respectful. It says, “your disability is not your identity.”  For example, rather than saying to a special education teacher, “I have a physical disability, a epileptic, and an ADHD kid in my class,” I would say, “I have a student with epilepsy, a student with a physical disability, and a student with ADHD.”  This small change suggests that it is the students who are important, not their diagnosis.  This is such an important thing, and I truly believe in it, especially in contexts such as at school.  I always want to know my students as people, not as labels.


However, when it comes to autism, I feel differently.  Autism is not simply a disability.  Words are powerful.  I don’t want Jake to feel like he carries a burden, a negative, or a label.  I want him to feel like who he is is just perfect.

 These linguistic distinctions might seem trivial, but our language plays a key role in shaping our thoughts, our perceptions, our cultures, and our realities. In the long run, the sort of language that’s used to talk about Autistics has enormous influence on how society treats us, and on the messages we internalize about ourselves.

http://neurocosmopolitanism.com/throw-away-the-masters-tools-liberating-ourselves-from-the-pathology-paradigm/

Autistic writer Jim Sinclair explains,

Saying “person with autism” suggests that the autism can be separated from the person.  But this is not the case.  I can be separated from things that are not part of me, and I am still be the same person.  I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me.  But autism is part of me.  Autism is hard-wired into the ways my brain works.  I am autistic because I cannot be separated from how my brain works.

http://www.cafemom.com/journals/read/436505/

So, when discussing a serious negative, I will say, someone has Crohn’s and Colitis, or someone has Cancer.  I will not say such a person IS Crohn’s and Colitic or Cancerous.  That would be ridiculous and insulting.  Yet, when discussing attributes that contribute to someone’s personality or identity, I will say someone is Christian, or someone is tall.  I would not say that they are a person with Christian beliefs, or that they have a strong height.  That would be equally ridiculous.  The difference is meaningful.  Therefore, I will say that Jake is Autistic, not that Jake is a person with autism.  He is Autistic, it is a part of his personality and identity that is neither his choice, like being tall, nor a negative, like having a disease.

Lydia Brown, another autistic advocate wrote,

 When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

http://autisticadvocacy.org/identity-first-language/

This is why it is important to me to get it right.  We are talking about autism at home.  I have books with autism in the title all over the house.  Jake is brilliant and learning to read.  He is going to ask me, he is going to see them, and I am going to be ready for him.  Autistic here, means something beautiful.

There is a key difference here for me, between saying someone is a person with Down’s Syndrome, for example, and a person with Autism.  The difference is in how the culture, the kids, the teachers, and the community mean it.  Years ago, it was common to use the word ‘retarded,’ which is hurtful, judgmental, and insulting.  Now, we carefully avoid this negative word, preferring to appreciate individuals, including individuals with Down’s Syndrome.  However, Autistic has become the new insult.  It is viewed as a negative, as an insult, and as something to be avoided.  I have heard it being used in schools and by public figures as a very negative thing.  Unfortunately, saying person with autism doesn’t help in this situation.  It is the same root word and association.  When I say that Jake is Autistic, I am saying that being Autistic is not an insult.  I am taking ownership of that word, that trait, and the right to decide the connotations it brings.

Jess, at Diary of a Mom talks about how she envisions her autistic daughter,

When someone spits ‘autism’ at her as a dirty word, I want her to turn it back on them, framed as her own. “Yes, I’m autistic. So? I’m damned proud of it.’” Heck, she could even throw in, ‘I’m sorry that you’re not, but that’s not my problem,” for good measure. And so too, she can use it to connect with others like herself, to be a part of a community of understanding and support and pride. And thank God that community exists and awaits her – forged and fostered by adults – adults who, in my experience, choose to be called autistic.

https://adiaryofamom.wordpress.com/2012/07/07/person-first/

Authentic Community

The pastor at our church has been working hard with all of us faithful churchgoers, trying to coach us into an authentic intergenerational community.  He has spoken about how we need to share our stories with each other in order to develop this authenticity and community.  Time and time again I have seen the power in this simple process.  When we share our stories, we share what God has done in our lives.  We share our hopes, our fears, our sins, our redemption.  We begin to appreciate other people for who they are, and how they inspire us.  We end up joining our journeys together, becoming stronger, more resilient, and more alive in the process.

God did not create us to live alone.  We are designed for community.

April is Autism Awareness Month.  Our first Autism Awareness Month as an official autism family.  As such, I have struggled with what to do.  I am interested and excited to view Autism Awareness Month from an “inside” position, from a place of more knowledge and more curiosity.

I also feel called to share something of our story.  This isn’t so easy.  We are connected to real people here in our real lives, friends and family who know us and our story, who have been supporting us all along.  And we have other people in our real lives, those acquaintances and facebook friends that don’t know all the gritty details.  Finally, we have the extended family and distant friends, separated by distance and busy lives and yet connected through history and love.  Who do I share our story with?  How?  What do I say?

This year I have decided to start small.  I don’t feel comfortable explaining Jake’s diagnosis on facebook, and I don’t feel like all the people I am loosely connected to online need to know all about it yet.  I am not ashamed of him or the diagnosis, rather I want to protect him, allow him to form his identity before I go about creating one for him online.  Also, the way information travels through facebook troubles me.  People he hasn’t yet met could hear about him and form opinions about him without meeting him in person.

However, our there are some people who are different in a few interesting ways.  One, they will probably never spend much time with my kids.  Life is just too busy, we are separated by so many miles.  People who I spent so much of my childhood with are creating childhoods for their children and the only way we are currently related is online.

And yet, this is a good way to connect and form an authentic community.  I can share our journey so far, be open about what we are going through, and create a deeper connection between us.  I know when I get an email, a phone call, or even a Christmas card, it thrills me.  I feel like we are still related, connected, on different paths but still journeying together.

The reason we don’t have authentic community is often fear.  Fear of being misunderstood, of being judged, or of bringing up something that will offend.  There is a huge desire in my generation to be heard, to tell our story, to share what is going on with my life.  This partially comes out of living a life saturated with social media.  I don’t think that all we crave is our fifteen minutes of fame, however.  I think we are craving a community, a support, a sense that we are not alone in our journey.  I know how much I’ve changed in the last six years.  I feel like I am a completely different person.  One with more sympathy, more empathy, more real friends, and much less judgment and fear in my life.  This is because I have been on a journey, and I have had people to share it with me.  People to cry with me, encourage me, pray for me, and inspire me.  Some of these people are very close to me and others have never heard of me.

It comes from sharing our stories.  Being authentic with people.  I don’t invite shame.  I don’t invite judgment.  Not happening here.

Bruce Springsteen wrote in his song “Into the Fire,”

May your strength give us strength

May your faith give us faith

May your hope give us hope

May your love give us love

This prompted me to send an email explaining Jake’s diagnosis, autism, and the blog a little to some treasured, more distant, people.  I am so happy about it.  I know they can relate to some of the parenting stuff that we are all going through.  I know they can relate to caring so much about our kids that we are diving in without a thought.  I know that they don’t know what to say, don’t know how to respond.  It’s all good.  I feel like I am spreading awareness, I am hoping I am spreading hope.  Thank you for being a part of my community.

A Complicated Calling

I feel inclined to write.  It’s hard for me, and the reasons are layered.  However, I have been so inspired by reading the voices of others like me.  Moms and Dads who are on journeys like mine, who have been where I’m going, and who penned words that lift me up.

I didn’t want to tell anyone about Jake’s autism.  I didn’t want anyone who didn’t know him well, personally, to know that first.  Because he’s a person first.  He’s complicated.  Autism isn’t how I know him.  Or at least, it wasn’t.  I knew him only as my baby.  Only he isn’t.  He’s grown up so fast and so much.  Being five and going to kindergarten is not only not a baby anymore, it’s the best thing in the world.

You see, it’s complicated.

More and more, however, I am learning to know him better, and I am learning that he is autistic, and that is a huge part of him.  Whether it is labelled or not, it is how I know him, how I treat him, and how others interpret him.  I am also learning about autism education.  Not his education as an autistic student, but my education about autism.  I am learning so much.  And I feel quite convicted to share some of this with you.  It’s a kind of autism awareness, I guess, only those terms are confusing and bothersome to me.

Even that is complicated.

It turns out a lot about autism is complicated.  The individuals themselves, the community surrounding them, the treatments, the diagnosis process, the causes.  I have learned so much already.  And my curiosity is piqued.  My brain is wired for curiosity.  I love science.  I love discovery.  I love learning.  This is what I am called to, this is my gift.  One of my gifts.  It turns out I have many.  Other gifts God has showered upon me include my incredible children, Jake, Aiden, and Penny.  I am called to use my gifts.

I have heard God’s call clearly on my life twice.  The first time He called me to teach at a local Christian school.  I decided I would teach there, become a teacher/mom until I had a calling to do something else.  This was inspired by a story a friend told me about Mother Teresa.

Someone interviewing Mother Teresa asked her about hearing God.  She answered that she had heard God only once, clearly, in her life.  He called her to work with the desolate in India.  So she did.  And continued to, whether she heard Him clearly like that again or not.  And as it turned out, she did not hear Him again like that, ever.  She said that she would continue to do what He called her to do until He called her to do something else.

What a beautiful story.  And now I have heard a new calling.  Autism Mama.  So here I go.