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.
Amythest Schaber is quickly becoming one of my heros. She is incredible, Autistic, and well spoken. Even cooler, she is from my province and there is a remote chance that one day I might actually get to meet her and thank her. Yesterday I had the chance finally to watch her keynote address, The Celebration of Autism, at the Richmond Autism Resource Fair 2015. I knew it would be good. It’s long, 21 minutes, so I had to wait until I had time to watch and listen undisturbed, but it is incredible. If you would, if you could, please watch it.
I want especially to share some of what she said with you, as it resonated so strongly with me.
You have to watch out for tolerance. It’s not love or understanding that most of us learn for people who are different, it’s tolerance. Not how to accept, but how to put-up-with. There is no love in tolerance. Tolerance is inequality. Tolerance says, “Who you are is different and wrong, but I, as the right majority, will conditionally allow your unpleasant existence to go on”.
It’s important because I have been raised on tolerance. I have been educated with tolerance. Tolerance is so tricky and it is wrong. I have taught in classrooms where I worked with tolerance as part of my foundation. It was out of ignorance and misunderstanding, not because that is what I wanted to do. Tolerance looks at what is wrong with a person, their situation, their behaviours, their choices, and looks away. It doesn’t understand, care for, or love anyone.
For many, the concept of Autism acceptance is a stretch out of their bubble of privilege that they are not willing to make. The thought of accepting Autistic people exactly where we are, as we are, disabled and human, challenges and joys alike, is too much. They are too deeply entrenched in the culture of cure and its panic-perpetuating tragedy rhetoric. To these people, to these people who try in vain to separate the person from the neurotype, to cut out the Autism, to mould a non-autistic child from an autistic one- the idea of accepting Autistic people as we are is outlandish to them. To these people then, to celebrate Autistic people, and even Autism as a neurotype, is disturbing…
The celebration of Autism transcends the shadows of ableism and the silence of tolerance. Celebration pulls first-person autistic experience and joy into the limelight. The celebration of Autism is the most powerful tool we have to hold back the dark of indignity, and to spread our message. In a world dark with pity, fear, and hatred for people with disabilities, celebration gets people’s attention. Celebration is radical.
This is radical. And I can see it. Celebrating with Jake when he is celebrating is enough to convince me. There are a few things here that I haven’t written about on this blog before that I want to address quickly. First is ableism. This is the idea that being disabled or able-bodied is somehow a difference that should be exploited, the same way that sexism, racism, or ageism separate humans into classes that have different worth. It is a term that I had never encountered before I dove into Autistic culture and started reading. Certainly, I have been guilty of ableism. Learning about it is opening my eyes to the prejudice that exists, even within myself.
The other thing is this idea of changing an Autistic child into on that blends in, that is non-Autistic in any noticeable way. It is an idea that is entrenched, promoted, and wrestled with in Autistic writing. I am now firmly in the camp of ‘that’s a terrible idea,’ with the caveat that any strategies that help Jake cope and succeed are worth learning and fighting for. The motivation always needs to be his happiness, esteem, and personhood, not my comfort or embarrassment.
To many of us, our disabilities are vital and intrinsic parts of ourselves, of our identities, the importance and meaningfulness of which cannot be denied. For many of us, disability is as an important aspect of our self as our race, religion, nationality, gender, or sexual orientation. But for too many people, disability is the last holdout of shame, of intolerance, of outright hate. Some of those people are disabled themselves and have internalized a lifetime of ableism.
I do not, nor will I ever, expose Jake to the public as a disabled person. I do not want to hold him up as inspirational, nor do I want to embarrass him. However, his struggles are real and if or when he wants to share them, I will support and stand beside him. Right now, my motivation is to help change culture and tolerance into something more meaningful; acceptance and a truly inclusive culture. Difference and disabilities are real, and they continue to be a source of bullying and negative self esteem, as well as the scary list Schaber has put together. Dissolving these ideas in the public will make Jake’s future brighter and safer.
I am amazed, when I find people who should be like me, who are also parenting incredible Autistic children, they are quiet. We talk quietly, about things that are a struggle and things that we have in common. We don’t talk about ableism, about neurodivergence, or about acceptance. It is so strange to me and quite frustrating. There is a hesitance to say it out loud.
It is this hesitance that continues to hold up that last holdout Schaber mentions. We have to push through our fear, our cautious quiet, and actually use positive words to expose the shame, intolerance, and hate. I have a few friends who get it, who see what I’m seeing and hear what I’m saying. They are a good, safe sounding board for me. It’s a start.
I guess I am becoming a neurodiversity advocate. I am not reluctant, merely surprised. This wasn’t in my plans. I didn’t know I had it in me. I didn’t know I needed to.
I have come a long way this past year.
I have decided that I am ready to write about what I think I believe, now. That sentence is not meant to be wishy washy, but things are changing so fast that it is hard to keep up. A year ago I wrote about what I thought I believed then. A year from now I suspect that I will have continued to try to keep up and may have grown my beliefs some again.
Here it is for now, then.
I don’t want to change Jake. I don’t want to cure Jake. I don’t want to teach Jake to blend in or suffer through therapy where he works at becoming less obviously autistic. I want to help Jake learn how to thrive in situations that are not easy for him. I want to help Jake learn to navigate conversations so that he can maintain true friendships with people who value him for who he is. I want Jake to learn how to conquer his anxieties and fears so that he is not limited by them.
This may not seem revolutionary, if you have been following my progression on this blog. It is something that has been rolling around in my mind though, as I am reading Neurotribes and looking at the reactions from the autistic community. It is also something that has become more important to me as I am struggling to find the courage to explain autism to Jake. I also have been invited to speak to another class at my school about autism and how to relate to a friend with autism. I feel like it is so important to ground myself in my beliefs and to know where I am coming from. It impacts where I go, what I say, and how I act.
I believe that in our community, the ABA therapists who are working with our family are united with us in our goals and are compassionate, kind individuals who see Jake as a person and who have the time and resources to help him. Therefore, and because the government supports us with funding for the therapy, we are happy to have them be a part of his learning team.
Over the course of his maturation and growth, I am hopeful that he will learn tricks and tools to help him in situations where autism is a disability. Situations like job interviews, where shifting eyes suggest that he is untrustworthy, would be more successful for him if he could sustain eye contact or find another way to demonstrate his competence.
There is something about people who struggle. They are made stronger. The Bible says that it is easier for a wealthy man to fit through the eye of a needle than to enter the kingdom of heaven. When life is simple and easy, we don’t understand how much we need God, how much we need community, and how much we have to give. Jake is fortunate that he has us, faith, and a strong community to stand with him as he faces his struggles.
Rather than treating autism as something that needs to be corrected, advocates want it to be seen as something to be accommodated, and that disability is largely situational. If someone is in a wheelchair, you can either focus on curing the reason they’re in the wheelchair and let them wait at the bottom of the stairs until you’re done, or you can build a ramp. Neurodiversity advocates want ramps for our brains. What exactly that looks like is still a work in progress, but I encourage professionals to embrace it. Work with us so we can live our best lives.
I feel like sometimes I am the one who needs the therapy. I need someone to come in to my house and reward me for staying calm when Jake sings the same three notes at top volume for over 20 minutes. I need someone to reward me for realizing when he is feeling overwhelmed and when he is strategically driving his little brother insane with purpose. I would love to be coached on how to come up with things to help everyone stay cool and comfortable while I am making dinner. Unfortunately, there is no funding for that.
an active, consistent, and arduous practice of unlearning and re-evaluating, in which a person of privilege seeks to operate in solidarity with a marginalized group of people
I am that person of privilege. Social situations make sense to me. I thrive on conversation. I talk out my feelings. I excel in interviews, in group situations, and don’t notice when things are out of order. I can keep my train of thought for several days, or several minutes, keep two conversations going while cooking and keeping an eye on three kids.
But I love autistic people. I love people who are disabled. I will stand with them work with them.
I believe that autism is a disability.
The distinction people are making is between the medical model and social model of disability. The medical model of disability, for those who may be unfamiliar, puts an emphasis on a disability being something ‘wrong’ with a person. In that model, disability is something to be corrected. Disability itself is seen as a source of reduced quality of life. The social model of disability, on the other hand, focuses on negative attitudes and physical barriers imposed by society, rather than perceived “flaws” in the individual. Neurodiversity rejects the medical model. It does not reject the concept of disability or deny that impairments exist. The primary difference is how disability and impairments are considered and addressed.
I had a conversation last summer with my sister-in-law about disability. She said that it seems like being autistic is a disability mainly because we (society) don’t understand, don’t make it easy, and put up obstacles for people who do not belong to the neurotypical majority. She suggested that being autistic was almost like being evolutionarily advanced, in a sort of way, except that the society is restricting the advancement. It resonated with me and I am still chewing on the idea.
I believe that the goal of therapy is to support Jake and teach him how to manage being autistic. I hope that learning strategies that work for him will increase his confidence and abilities to negotiate within our world and not lose any of what makes him who he is.
I believe that I have a role to play in educating all those I can. Everyone who knows him, everyone who knows an autistic, everyone who knows someone who is different and who is a minority and is therefore marginalized by the way our society runs. I can’t tell those in human resources that when hiring, to hire every shifty eyed individual. However, I can increase acceptance and understanding of different ways of communicating.
Most importantly, I can have faith in Jake. I believe in him. I believe in his abilities to solve problems. I believe in his dreams. I believe in his heart, his gifts, and his growth. I believe that he is created by a fierce and loving God who knows what he is doing. I can wait, I can watch. I can hope and I can pray. And I can find what I believe and stand firm in it.
Recently a book was released that is making a huge impression and getting a lot of press for autism. It’s called Neurotribes, and it is written by Steve Silberman. I have not yet read the book, but I intend to. Actually, I can hardly wait. I have read incredible reviews and cannot wait to get my hands on a copy. The author, although not autistic himself, advocates for a reimagining and a major change in the way the public thinks about autistics. And it seems to be wonderfully positive.
The first myth he dispels is this: Autism used to be rare, but now it is common. I know from my experience teaching, that there were students when I started that I really struggled to help. I did not know how to teach them, to reach them. I feel like I failed them. However, I also know that some of them moved on and eventually received an autism spectrum diagnosis. In hindsight, these students were demonstrating what we now know are autistic traits, but even just a few years ago, we didn’t have the understanding to recognize them. It is clear that there are autistic traits going back for generations. People who were never diagnosed, but shared the same struggles.
Myth number two is this: People with autism lack empathy. I have written about some of my thoughts about this here and here. It is crystal clear to me that this is simply a lie, a misunderstanding of autistics that continually gets recycled. I know I struggle to be empathetic at times, and I can see every day that he doesn’t share this struggle. He is very in tune with how other people are feeling.
The third myth is this: The goal should be to make autistic children “indistinguishable from their peers.” I could and should probably devote some time to sorting out my feelings about this. It is wrong to me that anyone should have to completely change from who God has created them to be. However, being able to work within our society and to “fit in” are very useful skills. To me, Jake’s successes will be what they will be. It is my job to help him to find ways to cope, to thrive in the world he has been born into, and to know that who he is is wonderful. Being unaware of his autistic nature does not help other people to support or understand him. It would be so much better for him to make friends who appreciate and love him for who he is than for him to have to be “indistinguishable” in order to make friends.
The last myth is this: We’re just over-diagnosing quirky kids with a trendy disorder. This myth is hurtful to the families who don’t know how to help their children get through the day. It is hurtful to the families who are facing the difficult decisions about how to transition their autistic loved ones to adulthood or even senior citizen life. It’s hurtful to me, as I can see now just how incredible a diagnosis can be and what kinds of positive change can come from belonging to a community of support.
My husband and I had a conversation last night about last Christmas holidays. We took our kids sledding with their cousins. Jake had been regaling us with stories of sledding at school on his recesses, so we went there to see what he could do and have some fun. We had just discovered his autism two months prior. Well. Jake thought that sledding was the most fun when you climb up the hill and toss your sled down. Then you run around yelling.
We tried hard to get him on his sled. His cousins had a great time actually sledding. His dad felt like Jake was missing out on this chance for happy memories. I couldn’t believe I had been cheering for him daily over his sledding victories. I couldn’t believe I actually paid money for the sled.
Now, almost a year later, we have changed. We have learned and we have grown. This kid is quirky, yes. But he is also autistic. And that means that his way to have fun is fun. His memories will be happy when he is allowed to be happy. His brain is different. So of course sledding for him is different. It is not an over-diagnosis. It is a key to understanding, love, strategies, and hope.
Okay. So next summer, I need to remember to set my sights even lower. For some reason, I figured that all of the amazing growth, the incredible year we had in kindergarten, would just continue into and throughout summer. I was not completely mistaken, but I had forgotten just how busy life in summer can be.
And this year there were three of them.
Penny is learning to walk. She still scoots rather than crawls around on the floor, quite effectively and happily. But now she is also pulling up on everything and working on walking while leaning or holding onto whatever is nearby. It won’t be long now.
She is also learning how to talk. This is amazing, and she mimics sounds that she hears as well as trying to make her own sounds for things. The boys were never this vocal as babies. She said “Mum,” for hours the other day, and is very close to da-da. It’s so fun, so special.
And oh my goodness. It’s so loud.
Apparently she has learned that talking is loud.
We are so loud.
Jake is loud. He has no volume control despite years of us trying to coach him to be quieter, softer, use his indoor voice, turn down the volume, etc. He just can’t help it. Now we know that he has auditory sensory processing issues, he hears everything at the same volume, and he can’t hear the difference in his own voice. So he’s loud. Okay. He’s loud and autistic.
Aiden is loud. Aiden was not always loud. And certainly, in a crowd he’s often almost silent. But here at home, that kid is loud. He wakes up loud. He plays loud. When he’s happy or excited, he shrieks and screams.
I get it. Kids can be noisy. And kids can be loud. I love happy sounds.
We are loud happy.
We are also loud angry.
And loud tired. And loud hungry. Loud when we are trying to have a conversation and our kids are loud. Oh. My poor husband. He isn’t loud by nature. He’s quiet. If anything, he hears too clearly, too sensitively. Sometimes even he is loud.
And so, Penny is getting loud. She really just thinks that is how it is done. And I guess, in our family, it is.
So here we are, all together, the five of us, for the whole summer. The noise is a little insane sometimes. Okay, so the noise is a little insane almost all the time. I wasn’t prepared. How do you prepare for that? Try to take more two minute quiet breaks? Try to store up peaceful thoughts to prevent joining in with the screaming? I am naturally loud, I know, and I want to help bring down this noise. It’s difficult.
I whisper, hoping they come down to my level. I yell, hoping to show them how loud they are, or how loud I too can be. I use body language. Well, that’s just useless.
Maybe I need more signs that I can hold up. Something like a red light, green light, only I would only ever use the red light. I’d be waving my red light around, hoping the kids would pay attention and remember that it means they need to quiet down. Right.
I am so looking forward to the start of school. I need the quiet. Summer is nuts! I know my dear husband can’t wait to get back to his classroom full of teenagers, because there they are quieter than here! So funny.
I am trying to live in this moment. Love this noise and these kids and this insanity without wishing it were calmer, quieter, or September. I’m doing alright at it, most days. But I have found that my calm and my presence in the moment is short lived. I need to work on it so I can stay here and enjoy it, even when it drags on and on and on.
Jake loves to talk. Seriously loves to talk. This kid just will not stop talking. I am thankful and blessed that he is verbal; when he was two, I wondered if or when he would start to talk. By age three, I was relieved that he had a few favorite words and some very short sentences. I would never have called him expressive, however. Something happened though, between ages three and four. Jake really started talking, and he has not stopped since. There have been many, many nights when we have gone upstairs, late at night, to kiss his head while he slept, and marvel at how quiet he was, because it is never, never quiet here in the day.
I first wrote about his talking here. I have been looking into the idea that Jake is a verbal stimmer (see below for definition). I have watched him a lot. When kindergarten started, he was chewing on pencils constantly, but I have never seen that at home. I have never seen any other real stims of any kind, though (for example, hand flapping). After his diagnosis, I started looking for them, but most of the stereotypical, obvious stims have never been a part of our lives. I counted myself lucky, and moved on, but now I am taking another look.
He really just cannot shut up.
Not at all.
He is getting better at waiting until we are ‘available’ to talk to him. But he often just goes off talking anyways, whether we are paying attention or not. There are times every day when I ask him to just be quiet for a minute, just a second, so I can hear what his soft-spoken little brother is trying to tell me. Thankfully, Aiden is becoming less soft-spoken all the time. But the noise level in our house is insane. Penny could sleep through a rock concert, I am entirely confident. She is trained for it.
So what is verbal stimming? It is a couple of things. Jake finds joy in talking. I don’t know if it is the sound, the feel of the vibration in his throat, the movement of his lips, or some combination. But there are many times a day when he is just so happy to be talking. Often way louder than any situation in our little house could possibly require. This fits with what I have learned about stimming. It is something autistics do for happiness—apparently, an incredible happiness that is self-controlled and almost impossible to restrain from.
The other thing about verbal stimming is that it can be calming and soothing for Jake when he is upset. He could be upset by anything or everything, and he gets loud. If he is upset because he sees that Aiden is hurt, I get a run-on, loud, lengthy, cannot-be-stopped-or-interrupted explanation of the event in super detail on repeat. If he is upset because there is a noise that he is bothered by, he may cover his ears, but he will often also start singing loudly. If he is upset because he is hurt, angry, frustrated, annoyed, or impatient, he will whine or cry, often with words. He cries over things that seem like smallest problems and screams over scraped knees. I have tried all kinds of things to help him calm down, from deep breathing to deep pressure to movement to distractions. The most effective, and often the hardest for me to do, is to simply let him cry it out. The more I try to get him to stop crying, the more frustrated he gets.
I found this description of stimming really helpful.
Sometimes stimming releases pressure—especially the good kind of stimming. Sometimes a stim will help us focus to block out invasive and overwhelming sensory input, becoming an essential coping aide.
It’s a type of self-soothing, whether one needs to be soothed because something is just too cuteor because that ambulance siren is just way too loud, the root cause is essentially the same.
In my opinion, the question shouldn’t be why autistic people stim, it should be why do autistic people stim in such a specific way. Not every autistic stims, and not every autistic person shares all the typically autistic stims. I’m a finger waver, but I’m not often a hand flapper. I have a vast number of vocal stims, but I’m not usually a rocker or a bobber. I know hair-twirlers who rock back and forth. I know knuckle-crackers and foot-tappers who don’t wave fingers or flap hands. Every autistic is as unique as her own personal stimming lexicon.
Neurotypical people stim too! Some notable neurotypical stims include tapping fingers or feet to music, stroking the face when stressed, or rocking in a rocking chair.
A funny thing about that is that I totally get it. While I don’t cry over Lego that just won’t stay together in super elaborate creations, if I am actually crying, it’s incredibly difficult for me to stop. Once the emotions and sounds and tears start coming, the release is so powerful.
Autistics have been very helpful explaining stims and how important they are. One, Anabelle, says this,
I benefit greatly from vocal stimming. It keeps me more in more control of my physical body when I am overcome by miscommunications, anxiety, and too much of everything.
BUT it really does attract a lot of attention.
When I vocally stim, there isn’t much warning, and I have very little volume control. I try hard not to be too close to someone if I think I am going to be loud, for the sake of their hearing. But it’s difficult for me to control.
I watched this video called, “Ask an Autistic – What is Vocal/Verbal Stimming?” It was amazing. If you have a few minutes, please watch it. It’s well done, hopeful, encouraging, and so, so good! I loved so many things about this. One was how lovely this speaker is, Amythest Schaber, how sweet and autistic. Especially if you don’t know many autistic people, this is a nice example of how real and nice they are, not strange or scary!
She does a very good job explaining why it is important to allow verbal and vocal stimming, and how the real problem with it is when it is annoying for others who are around. She suggests that we need to change our perspective rather that stop the stimming.
I agree with her. Completely. On principle.
Jake’s non-stop talking does not hurt him, nor does it hurt anyone around him.
But there are so many times that we are all going crazy!
I know a few things that will help this situation, and the more I think about it, the more I realize they are powerful and possible. The first and most important thing is that we need to be less bothered by it. Truly, my husband and I can text each other if we really need to. But if I can recognize that it brings Jake joy, calms him and helps him, then I will be more patient, and I will be happy that he is doing well. If I can remind myself that it is okay, that all is fine and it is his way of coping with stress or creating and expressing joy, I will find peace and joy in that.
The other is creating some boundaries. I can build on the ‘not available’ idea by creating times when it’s not okay to talk constantly. I can make a social story about watching tv with dad and how he likes to hear what the tv says. I can create some practice situations where other people are trying to talk and the noise Jake is creating makes it difficult.
Finally, I have really noticed that Jake loves music. I hope to write more about that some time soon. But when there is music on, even softly, he listens, he sings, he dances, and he is calm. He does not talk nearly as much. I also love having music on in the house, so I can try to remember to use this when his constant babble becomes overwhelming. It may be time to just change the sound in the house to music rather than wish for a quiet that will never come.
Today we had our second IEP meeting with Jake’s school. I have read such heartbreaking stories of others’ anxiety about these meetings. How things can go so poorly, misunderstandings can happen, people don’t see eye to eye, and stress rules. It just is so different at our school and I am so thankful. I’ve also read some other stories like ours. We are those people with the amazing team who love our son, who get him, support him, love him, and listen to us.
I cannot believe what a gift this autism diagnosis has been to me. One year ago, I was so worried about Jake. I was so scared of kindergarten, but I was even more scared of more days of him being home. I didn’t know if I should hold him back a year, or put him in school. I felt selfish because I didn’t know how to handle him and I needed help. I felt hopeless because it was as though my relationship with Jake was based on rules, punishments, and not getting anywhere. Meltdowns were violent, heartbreaking, long-lasting, and often. I didn’t know if he was autistic or not, I didn’t know what that meant, I didn’t know what I was doing. I did know I needed help.
Now he is so successful. He is so happy. He rarely has a big meltdown. He knows how to calm himself down when he is upset, and I know how to help him. Jake can articulate what he needs and how he is feeling, and I know enough to listen. He is doing so well. I am doing so much better. I am able to stay calm when I talk to him. I am able to separate discipline and support, punishments that are important and effective and when all he really needs is time and help cooling off.
What a window.
Being officially autistic has given Jake such opportunities. He is pulled out of the kindergarten class with a small group for learning assistance twice a week. He is pulled out with another group for speech and language in social situations support once a week. He gets one on one time with his behavior consultant twice a week at school and twice a week at home. There are two educational assistants in his class who listen to him, support him, prep him for transitions, and make his day run smoothly. And of course, his teacher is incredible. She has encouraged him and listened to him. She has directed all of this. She is amazing. We are so, so blessed.
I know that there are other kids who have similar needs and need support in similar areas. But our diagnosis has given us access to so much extra support. There are times I wish they had a similar diagnosis so they could have all the good that we have too.
There are days I don’t know why Jake has to deal with this. I don’t know why this happened to my baby, to our family. Days like today, I don’t know why it happened but I am thankful. How complicated. I want to share this blessing. I want to share.
I am prayerful. I believe that God gives to us with responsibility. We are stewards of His blessings. Today I am resting in relief, soaking in the joy that came from this meeting with the people who make up our team. I am praying for direction, for keys to what to do in the future.
I do know that my desire to focus on the positive, my attitude about Jake being autistic, has been strengthened. There is nothing in the DSM-III, DSM-IV, or DSM-V that says autistic kids are anything less than incredible. Like Temple Grandin said, “Just different.” And he’s such a cute little kid.
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.
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 ispart 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.
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.
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.
I don’t know how autism works. How Jake can be so ‘high-functioning’ and someone else’s child can struggle just to talk. I don’t know how the violence that explodes in our home at times rates compared to other families. I don’t know how such a wide spectrum of symptoms and behaviours can all be related. I know that I have told people, hesitantly, that Jake has been diagnosed with autism, and heard them respond, “Well, he is so high-functioning.” Those words have brought me comfort, relief, and yet, always felt a little strange.
The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.
I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.
I know we are blessed. And I know that even though we are blessed, that Jake is so verbal, that we are all functioning alright most of the time, he is autistic. It is real. He struggles with the society around him. He struggles with the sensory input he receives. I can foresee him struggling with writing essays or abstract concepts that are hazy and hard to define.
He is my first and highest priority. I have to try to advocate for him the best way I can. He is going to grow up in this world, and meet people who are very much like him, who have no such diagnosis. He is going to meet people who speak using scripts, repeating familiar phrases that fit the situation. He is going to meet people who are completely non-verbal. And somehow he is going to try to fit himself into this situation.
I want to protect him from depression, from despair, from low-self esteem. That is more important than teaching him his letters, how to ride a bike, anything else at all. He needs to grow into himself, to know he is valuable, he is whole, in every way that truly matters, he is just like every other human.
It is comforting for me, for my parents, for those who deal with Jake often, to think of him as high-functioning. However, I am already struggling with this. There are days where we are not functioning very well at all, moments where I feel like everything slows right down and I am confronted with the reality of autism and the difficulties it presents. Then, there is the judgment that the label brings, that somehow my child is doing better, will be more successful, than your child with severe autism. And yet I have such high hopes for him! I imagine he will meet someone, get married and have a family. He most certainly will get a job and move out, living independently some day. Yet, there are many parents who feel like these are impossible dreams for their autistic children. How are we the same? Do we need a way to explain where on the autism spectrum our children fall?
Autism is one word, but there is no one autism.
Alas, for now that one word is all we have. So like it or not, we’re going to have to continue to figure out how to share this ill-fitting umbrella – this one name for all the myriad manifestations of this baffling disorder.
Some iterations desperately debilitating, some completely incapacitating, some mildly challenging, some no more than delightfully quirky – all with just one name.
We seek – no we demand! – tolerance, compassion, understanding. But how on God’s green earth can we expect those things from others when we cannot seem to show them to one another?
We’re in this together. And like it or not, that’s the only way we’re going to be able to move forward, get answers and make this world a better place for our children.
I know as the days get smoother, that we are in a good place right now. It is easy to forget, when Aiden and Jake spend not just moments but hours playing together, without major incident, that it was not always this way and it will not always be this way. It is easy to forget, as I go through the ritual of bathtime or bedtime, how many things we have tried, how many tears have fallen, and how hard these now basic routines used to be. Even school is going so well. I have to remind myself that before kindergarten started, even with no diagnosis, I spent about two weeks on just preparing Jake for the days that were to come.
Now on top of all that, we have more support, more information, more experts to talk to, more resources and tricks to pull out. We just received our package of therapy resources. I could never have imagined how quickly Jake would take to his visual schedule. That thing is super! So yes, we are functioning well, right now.
And the thought of school picture day coming up reminds me to prepare Jake. Knowing he still has not had a successful dental cleaning reminds me of how hard it can be. When I plan or imagine vacations, how Jake will handle it all is an important consideration in deciding where to go and what to do. Just having the three kids home for five days on my own while Jake was sick was a very in-my-face reminder of how challenging he can be. My days with only Penny and Aiden seem so simple by comparison.
Well, I’d say that as with most things, we attack the problem from both sides. We work on changing the language that reinforces the bifurcated [split in two groups] model of autism (not using it is a great way to start) and at the same time we educate the general public on why support and accommodation are vital across (around?) the spectrum. Changing language is a process. It’s not a quick fix…
People who are severely impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.
People who may appear to be more mildly impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.
The thing is, when we refer to someone as being high-functioning, we are saying that ‘other’ autistics aren’t as good. That one person’s diagnosis is somehow more valid than another’s. We are saying that autism is bad, and that thankfully, you don’t seem to be displaying very much of it. This is why I feel strange and uncomfortable with the term, even when it has brought me comfort to have it applied to my son. Because autism isn’t bad. I define autism. I define it as a neurological condition that brings struggles, requires compassion and support, and has nothing to do with the value of an individual.
I am going to stop using words to break autism’s vast spectrum into segments, I am going to stop using words that assign values where they have no place.