April is Autism Awareness Month, and today, April 2nd, is Autism Awareness Day. You might be aware already that my 5-year-old, Gage, was diagnosed as autistic at age 2.5. He wasn’t talking, wasn’t gesturing, wasn’t great at eye contact, and would sit in his room and look at books for hours. I googled “toddler not talking” and started to get worried when all kinds of autism links came up. Our pediatrician blew us off when we told him these things. “Wait until he is 3,” he said. “He is a late bloomer.” But I was afraid he was wrong. I called Gage in to early intervention when he was 26 months old to get him evaluated. A 4 month waiting list later, it turned out I wasn’t just a paranoid mom. I was right. It hurt to find out. All that Gordon and I knew about autism was Rainman, and a distant memory of a news segment featuring a kid rocking in the corner and banging his head. Was that was Gage was going to be like? Would he be institutionalized or live with us forever? We had no idea. He was such a lovely child. No trouble really, just no language and a few things that were quirky. Suddenly, we were the parents of a… disabled child. An autistic child. What did that even mean? We felt like we had just been told that we had to climb Mt. Everest, and we had zero mountain climbing experience, and we were not even anywhere near the base camp.
Since then, we have read a lot, listened a lot, learned a lot. Autism is not what we thought it would be. It is different that having a typical child, not better or worse. Just different. We appreciate everything more, take less for granted, and celebrate the small victories. It is scarier, though, because we do not know what the future will hold for Gage, and there is shocking discrimination against autistics. For instance, if Gage needed a heart transplant, there is a good chance he would not even be put on a waiting list. Someone, somewhere, has decided that autistic people are not worth saving, that their lives are not as valuable because they are different and (according to these deciders) they must not have a very high quality of life.
And so we fight. We fight to make the world better for Gage. We fight to educate people. We fight for equal treatment. 1 in 88 people are now estimated to be on the autism spectrum, maybe 1 in 50 according to newer research. We are not going away. We are not a fad. Adult autistics, who 20 years ago might have been silent, unnoticed, or shut away, are communicating with the world like never before. We are so grateful to them, because they open up windows of understanding and are slowly letting the light in on this often misunderstood diagnosis.
Autistics are different. There brains are wired differently from the majority and differently from each other. They are as unique as we all are, and when you have you brain wired differently from “neurotypicals” (people who typically wired), you never know what your different wires are going to touch. Some autistics can’t stand being touched, some are sensitive to light, some are intellectually disabled, some are geniuses. I am not an autism expert, but I can tell you about Gage, and how his autism affects him. I hope that by trying to understand Gage, you will understand all autistics better, even though Gage is just one bird in the flock.
Gage is mellow. I often refer to him as “the best one” (out of my 3 children) because he is so easygoing. I have seen him get angry once in my life (He was 3 and Griffin The Older was bugging him). He has never hit, sworn, pulled hair, or shown any other violent behavior. He has never lied and has never talked back. (He started talking when he was 3.5 and is not a huge talker, but communicates what he needs.) He is the only one who does chores without fuss. He is the easiest to get up in the morning and is so cute when he swaggers to the shower naked and sticks his hand in to see if it is warm yet.
He is a hugger. Gage seeks pressure and likes to be “strapped in to the world”. When I am riding in a car, if I don’t have my seatbelt on, I feel like a marble in a jar and I need to get my seatbelt on as fast as possible. I think Gage feels like this — like a “marble in a jar” — all of the time, because of the way he is wired. This is why he seeks hugs, and likes to lean on you, or a couch, or a floor, or a wall. He will use you as a seatbelt to strap himself to the world. He gives hugs freely, and will stop what he is doing to come give me a smooch most of the time when I ask. When he gives me a kiss, he grabs the back of my head and brings me to him. It is sweet and contemplated and one of the best things about him.
Gage is active. He is a mover. He is a jumper. He used to jump in his crib for hours. He will pogo around the playground, again, we think to help him feel more stable in the world. He loves the rope swing in the backyard, roller coasters, trampolines and airplane rides from his dad. He loves the movement and the pressure that gravity provides. Sometimes he tenses his whole body and balls up like a skier going downhill, we think to reset his place on the earth.
He still likes to play alone sometimes, and sometimes he plays with Griffin, who is 7, and Gibson, who is 3. I am impressed daily by my children, who are so kind to each other. Gibson doesn’t yet realize that Gage might be a little different. He is totally normal to her. He is just Gage. Griffin is wise beyond his years when he talks about Gage and autism. They are good kids. They love each other, and they like being together — all 3 of them. I am thankful every day that they will all be here for each other when Gordon and I are gone.
Gage is a great eater. He is the only one who will finish his plate without coaxing, and then finish anyone else’s plate who needs help. He is a tall kid, too — 99th percentile for height and 50th for weight. Gage is a full head taller than some of the kids in his class, even though his June 26th birthday makes him one of the youngest. We are grateful that he is so gentle. He is extremely healthy and strong and has only been sick twice in his life. If he had been born into my grandfather’s farming family in 1903, I can picture him being the best farm hand of all of my great-uncles, because he is so strong and he’s going to be so big. According to the height charts, he might be 6’ 7”.
Gage makes a little noise sometimes. I don’t know how to describe it except to say that it is not a scream or a yell, but he makes a syllable and hangs onto it. He does it when he is excited and happy. It is part of who Gage is, part of his autism, and it doesn’t bother us. It bothers some people though. Sometimes they are rude enough to let us know, and I wonder if these same people would tell someone in a wheelchair to “just walk” the way they say Gage needs to “just be quiet”. He also laughs easily, at appropriate funny things, but he laughs longer and more exuberantly than most people do. That bothers some people, too. I see it as a gift.
He loves play areas — Chuck E Cheese, kids’ gyms, bounce places. He loves to run around and jump and look at the video games. He has an amazing sense of direction. He tries to direct me to go to Chuck E. Cheese if we are within a few miles of it by saying “Turn left here! Chuck E. Cheese’s!” from the back seat. He asks to go to play areas a lot. He knows which freeway exits we need to take to get to them, and gets irritated when we don’t exit at the right place.
Gage’s communication skills are still developing. He will tell us when he wants something, when he is hurt, what he is sad about. He is not a conversationalist yet. He uses language as a tool. There is a reason for everything he says. He does not always answer when we ask him questions, but he is getting better at it. He understands everything we say. Despite not talking so much, he has a large vocabulary,
He is still not great at eye contact. We are used to it, but it bothers some people. They think he is not paying attention since he is not looking at them or speaking to them. He is, but he is also paying attention to 20 other things, and his brain isn’t wired to filter down to one channel yet — remember he is just 5. I explain it to people like this: Imagine you walk into a television store and every television on display is on a different channel, and all are very loud. ONE of the televisions is asking a question, but all of them are at the same volume, AND there is also an air conditioner blowing cold air, a shiny object gleaming in the corner, a shag carpet between your toes, brightly colored walls, the smell of a garbage dump, the smell of cupcakes, the smell of pizza. And the television asking the question gets frustrated because you don’t answer it, or look at it…. and decides that you don’t belong in that television store anymore. Gage is working on filtering things, on answering and looking at just one set of input. He can do it with practice, but he needs opportunities to practice. We are fighting to give him those opportunities.
Gage is smart. All of those hours looking at books? He was teaching himself to read. He knows his colors, shapes, numbers, phonics. He can navigate our computer easily, and if he can’t find what he wants, he will google it. He likes design programs and looking at graphic logos. He loves the iPad — “Where’s My Water” is his favorite thing on it right now — it is all about spatial logic and Gage is good at it. His spelling is great, too, and if we can’t understand what he is saying (his diction is not great) we have him type it out for us. His favorite book is “Pinkalicious” which I find sweet. He loves letters and patterns, and will play with puzzle letters for fun — spelling words and mimicking logos.
We have a Stanford tee shirt for him. It’s my hometown college, and we don’t dress him in it to be ironic. We think he has it in him to go there, or M.I.T., or UNLV or wherever he wants to go. if he is only given the opportunity to learn what comes naturally to typically wired people. If he is taught in the way that his autism requires. Gage is not being taught the kindergarten curriculum this year, because one of his teachers says it is not her job. (edited to add: We have since found out that it WAS her job, and that she was just refusing to do it. And that she then went into other kids’ IEPs and campaigned for kids with learning disabilities to be excluded from gen-ed. Sadly she is still teaching and spreading her bigotry and ignorance.) The other one is a long-term sub. Gage’s teacher in the autism program — his teacher of record — is gone. As of yesterday, his new teacher of record teaches a different group 3 to 6 year olds in a different classroom. She is good. She is in another classroom, though. We like the sub, but she is not an autism specialist, and she now is in charge of 11 kids from 3 to 6 who are all completely different and have different needs. Gage keeps coming home with the same two worksheets — which I am sure are good for the 3 and 4 year olds, but not for Gage, who deserves to be taught the k curriculum. For months now, one worksheet where he traces his name, and one worksheet where he draws lines. By the way, he can write his name without tracing it, and has been able to do so for a while. It’s not neat, but it is readable. His fine motor skills are lacking. It’s part of his autism. There are good teachers at his school. A good speech therapist. A good OT. There is compassion from the staff. The principal cares. Can they change the way Gage is being warehoused? No. Can they just say, “You are right, Gage can be included like he would be if you lived an hour away in California.” They cannot. It is a system error. Their hands are tied and they can only do their job according to the rules. The system needs to be changed.
Is Gage being prepared for 1st grade? No, because he is autistic, and they can just send him to the next special class, where he will be segregated even more (no typical peers in that special class). He can go from special class to special class, culminating in the high school special class, where this year, the autistic kids are busy making greeting cards and picking up trash from the classrooms where typical kids get to learn physics, Shakespeare, and computers.
Gage has 3 hours of tutoring every day. Usually from 3 to 6, every day but Sunday. He is learning skills to help him communicate better and fit in to our typical world. It is based on “applied behavioral analysis” therapy and as of last year it is covered by insurance, thank goodness. It is frustrating for him sometimes to have 3 more hours of school, and we are careful to listen to the way he is being spoken to by the tutors, to be sure they are kind to him. They always are. We are lucky. Some autism therapists are not nice. I am sure it is easy to forget that these are not bad kids, they are just kids with different operating systems. Some autism therapy centers still use shock therapy though, and people think it’s ok because “that’s the way it has always been done”. It terrifies us that places like that still exist. We will never send Gage to a place like that.
So what do we have here — a mild mannered and gentle kid who loves to hug and seeks out touch to feel more in place in the world, an active boy who has copious amounts of energy and is often in motion, a smart child who has so much potential. If he is only given a chance.
And what are we being told? When we ask for Gage to be educated to his full potential? For Gage to get the support he needs because he has a bona fide disability? We are told no. We are told that the best thing for Gage is to be segregated. That his kind of people have a place, and it is not near the majority. It is shut away in a class with others like him only in label, not necessarily wired like him. Maybe they are afraid of light, or loud noises, or maybe it hurts them to wear clothes. Maybe they scream all day because it is the only thing in their life that they can control, or maybe they have never said a word at all. They are all so different, and they are all segregated, because they are autistic. Because they are disabled in that way. And they have no chance to learn how to be in our society from the children who are one day going to run it.
Right now, Gage is allowed to be with 25 amazing, compassionate, impressive typical peers for 90 minutes a day. 25 chances to learn the way that society expects him to act, 25 chances to build bridges to the neurotypical world. And they, in turn, are given a chance to start building their bridge to Gage, and other people like him, who are different. They are given a chance to learn what cannot be taught with a worksheet or a book — that in our American society, we all deserve an equal chance and that we all have potential, and that different does not mean less. 40 minutes at the start of the day. 20 minutes at lunch. 30 minutes at the end of the day, for art or PE or whatever the special of the day is. That’s it. That’s all. The rest of the day he is shut away with a loving teacher, two nice aides, and eight other children, aged 3 to 6, who share his label, and two pre-school aged peers too.
If I were over 100 years old, I would remember when women couldn’t vote in this country, because we were considered different and less equal than men.
If I were over 80, I would remember the way Jews were treated all over the world, and how millions of Jews were exterminated for the crime of being a different religion.
If I were over 70, I might remember when African-American children were not allowed to go to school with whites. I would remember the “separate but equal” water fountains and “whites only” clubs. I would remember how abhorrently they were treated, because they had different skin color.
I am over 40, and I will remember when gay people did not have equal rights. And I will witness that inequality finally being made right. It is happening now.
And I will remember when the last equal right is afforded. I will remember when, finally, all people are treated as equal, no matter how different they are. No matter what sex, or race, or religion, no matter who they love and no matter if they are disabled. Different is not less. It is time for that idea to become universal. Segregation is not ok.
Gage needs to be with us in our world in order to learn to succeed in it. The time for Gage (and other autistics like him) to be shut away is over. The time for just being aware is over. It is time for equality. It is time to accept Gage for the awesome kid that he is, and realize that as much as he has to adapt to living in our world, we need to meet him halfway and start to adapt to living in his. It is time to include everyone.