Every day I read my “autism” Google Alerts and hear about the troubling stories going on in our community. Between teachers who allegedly lock their students in cages to try to control them, to other teachers who allegedly show up hungover to school where they can get away with it because they have only nonverbal students, it’s clear to me that we need to do a better job of weeding out teachers who have no excuse being in our loved ones’ schools (it also takes attention away from the amazing teachers out there).
And then there’s you. The teacher who told a student that only white children could have autism so “you don’t have to worry.” You may have thought to yourself, “What was the harm?” No other adult was around when you said it.
However, I was there. I was 26 and working at an after school program. And I heard you.
For the longest time, I wanted to say nothing — to let it go like I misheard the conversation you had with the boy completely. Truth be told, I’m not sure what your intentions were, but what I want to tell you today, if you ever read this message is this:
Today, African-American and Hispanic children are diagnosed far later than Caucasian children, according to the Centers for Disease Control and Prevention. Still, I continue to hear the stereotype that autism is a “white person disorder.” As we continue to break barriers in our community, I hope this is one we can break as well. I want you to understand that in our society, so many students are falling through the cracks because of a lack of a proper diagnosis, and saying things like this will not help our community moving forward.
So, the next time you think of possibly stereotyping autism in this way I hope you can think of the person instead of their race. Could autism be more prevalent in white children than others? Absolutely. However, take a minute to think about our community. Take a minute to think about the autism awareness we’re building right now. Don’t let this ignorance lead another to think the same way. Today, I know children with autism who are Caucasian, African-American, Asian, Hispanic, etc. With 1 in 68 children affected by autism, it hits all of us in someway.
Even if you were trying to make this student feel better, you also did a huge injustice to a community that, more than ever, wants to be accepted for who they are as individuals. Trying to scapegoat a tired stereotype to comfort the needs of a student shows why we need to always be acknowledging autism as a difference, not a deficiency.
I hope the next time a conversation like this comes up with a student, you can instead encourage them to learn the signs of autism and help them understand how wide the spectrum of actually is. We need people today to see autism as what it is, which is simply…
“People with autism should eat more strawberries.”
“Too much automotive exhaust is a leading cause of autism.”
“Chemicals found on non-stick cookware may trigger autism.”
The one about maternal bonding is sort of painful for me. The truth is, I did have a hard time bonding with infant Jack. The little guy shrieked and whined and cried for a solid year. He started sleeping through the night at 6 weeks and stopped at 3 months.
I was exhausted, and my husband, Joe, and I were fighting constantly — bickering and arguing and long screaming matches. For the first time, I could feel my marriage slipping away from me like sand through my fingers.
And my first child, Joey— sweet, uncomplicated, good-natured Joey — was a year old at the time. His easy nature only highlighted his new brother’s fussiness.
But I’m certain there is no one on Earth more bonded to this boy now, and guess what? He still has autism.
I am happy to announce that I do know what caused Jack’s autism, and without further ado, I’d like to tell you.
Wait for it.
It’s kind of a big deal.
Drum roll, please.
Jack has autism because, as his 5-year old brother Henry says, he was “bornd-ed” with it.
Yes, I believe autism is a genetic condition. I believe that somehow Joe’s DNA mixed up with my DNA, and together we had a child who thinks Wednesday is orange. Perhaps his unique genetic coding makes him more sensitive to things in our environment like lead and mercury and plastic.
I don’t know about the strawberry thing though.
(For years I blamed Joe’s side of the family for the autism gene. But a few years ago I went to a funeral for someone on my side of the family, and I looked around the room and was all like, hmm.)
I was in a coffee shop last week, and a woman came up and introduced herself to me. She said her daughter, Lily, is in Jack’s fifth grade class. I nodded and smiled, took my cup of coffee — OK, OK, and my cupcake —from the counter and turned to leave.
“Wait,” she touched my arm. “I just wanted to tell you something. Lily told me that a boy called Jack ‘weird’ the other day in class.”
I cringed. “Oh, well, yes. That happens.”
“Lily said she told the boy that Jack isn’t weird. She told him he’s exactly the way he’s supposed to be.”
You can see my dilemma. If I start running around declaring autism an epidemic and screeching about how we need to find out where it’s coming from and who started it and how to cure it, well, that sort of contradicts the whole message of acceptance and tolerance and open-mindedness.
This fragile glass house we’ve been working so hard to build over the past decade will explode into a thousand tiny pieces.
But on the other hand, it sort of is an epidemic. Other families are going to have babies and maybe they would like to have some idea of how to prevent this tricky spectrum disorder from striking. My own children will have their children, and if autism is indeed caused by automotive exhaust, it would be good to know so we could all buy electric cars.
At the same time, I don’t want to focus so much on the “what” and “when” and “where” and “how” that I forget about the “who.”
Because I don’t care where it came from.
But I am kind of curious.
It doesn’t matter to me why Jack has autism.
But it might be good information to have.
There’s nothing wrong with him.
Maybe there’s a little something wrong with him because he just spent the last 45 minutes talking about all the different kinds of gum that Wal-Mart sells.
I wouldn’t change a thing.
I might change a few things.
I celebrate autism and all of its spectacular wonder.
I hate autism because it makes my son talk about gum and Wal-Mart so much.
He is broken.
He is whole.
Autism is no one’s fault.
Maybe I should stop using Tupperware and make him eat strawberries even though he hates them and re-paint the house to make sure there’s no lead on the walls or the windowsills.
Maybe I should throw away our frying pan.
Maybe I should have loved him harder, deeper, more when he was a tiny swaddled baby squirming in my arms.
Maybe this is my fault.
As you can see, my feelings about Jack’s autism diagnosis are as complicated as a prism with a thousand colors and angles and light. Some days, my doubts are soft whispers within my heart, other times it’s as though someone is shouting in my ear.
I am not a scientist. I am not smart enough for that. But I am a mother. And although I am not really smart enough for that either, I do know autism from that angle. I know the rigidity and the obsessiveness and the rage over having an aide in school. I know the disappointment and the fear. I know the quiet longing that comes with being different or weird, because I see it every single day.
When you live with someone who has autism, you say the phrase for now a lot.
So, for now, I’m going to believe Jack’s autism is because of DNA and RNA and heredity.
For now, I will try to add broad splashes of green and blue and purple and orange to science’s black and white brush strokes. Together, we will fill in autism’s canvas until a clearer picture comes forward.
I don’t know exactly what that picture looks like yet, but I like to imagine it’s a utopia of sorts — the perfect intersection of science and people. There are strawberries and puppies and lots of peppermint gum in Wal-Mart (the kind in the blue container).
There are tall, blond girls named Lily and boys with glasses named Jack.
And if you look hard enough, you can see a glass house in the distance — almost on the horizon. It glints and sparkles in the sunlight, and it is breathtaking.
If you look closer, you will see a sentence etched into the front door. This one sentence — this collection of eight words — well, they are very, very big.
They are a shored wall against a flood of uncertainty.
They are a million bright stars in an otherwise long, dark night.
They are peace and forgiveness, power and pride. They are everlasting absolution.
The first time I heard them, I was in a coffee shop buying a cupcake.
My first job in disability support was as a physical education teacher for teenage boys with autism. The program was run at a prestigious private school, and we were given access to the school’s private swimming pool. This was always at the end of our fitness sessions and most of the parents would come into the pool area to watch before picking their children up.
This always made me nervous; I was new to this kind of work, and I was always a little on edge having parents watch me with their children. One day I walked the boys over to the change rooms before realizing I’d left one of their bags on the other side of the pool. I asked them to wait for me in the change rooms while I went to get it.
When I came back I saw one of my students casually chatting to an all girls swimming squad — completely naked! I sprinted over and ushered him back into the change rooms as quickly as I could. I felt terrible, realizing I’d let him down and caused an extremely embarrassing moment for him, as well as his father, who was watching on.
I was relieved when my student brushed it off as a simple mistake, but when I walked him back to his dad, my heart sank. He was holding his head in his hands and crying; I could see his whole body shaking. I began apologizing profusely. But suddenly, I realized he wasn’t crying. He was laughing.
He looked at his son and continued to laugh, shaking his head with a smile. He grinned at my panicked face and told me this kind of thing was a fairly common occurrence for them and not to worry about it.
I’m sure part of his amusement was derived from watching my frantic reaction, but the thing that stuck with me was the fact that he’d fully accepted this kind of thing as an honest mistake, which then allowed his son to do likewise, preventing any real embarrassment.
I’ve continued working in various disability support jobs over the past few years, and I have always tried to remember it’s not my job to make my clients behave in a way that will make others comfortable but to teach others how to react in a way that will make my clients comfortable. Just like that dad taught me.
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We’re quickly approaching the one-year anniversary of my son’s autism diagnosis. This has been a busy year filled with change and learning. I think that out of our little family, I may have been the one who changed and learned the most. Some of these lesson have been painful. I want to share some of it with you. Hopefully you can learn from my mistakes. Or at least find comfort knowing that you aren’t alone. Because you need to…
1. Be kind to yourself
Yes, I did think at a year old that my son might be autistic. Instead, he was almost 6 when he was diagnosed, making him ineligible for all of the early childhood interventions. I have felt way too much guilt over it. I have had to let it go. The only thing the guilt was doing was sapping my much-needed energy from the here and now. I did the best I could with what I knew. That, my friends, is the only thing that we can do.
This leads us to…
2. Listen to your gut
I can’t stress this enough. I’ve learned this the hard way. If you feel these’s something up with your child, then push for an evaluation. The worst case is that you can be wrong. Best case is that you are saving everyone from unnecessary misery. You bypass number one. It’s a win/win. There will be times that you will be the unpopular voice. Everyone may doubt you. We as the parent some times pick up on stuff that no one else may see. The last piece that led me to seek an evaluation for my son was another blogger’s journey. I found my self saying far too often, “Wow her daughter is just like my son, and she is autistic.”
3. You are your child’s best advocate
If you see your child struggling, speak up. If you see a big change in behavior, find out why. Don’t be afraid to ask questions. They need you to. Many of our children have a hard time communicating with words. You have to become a professional at understanding their form of communication. Verbal and nonverbal. I always think of Grover from Sesame Street: ” I will unleash my powers of observation!” Be quiet and watch. They will tell you what is wrong even if it isn’t with words.
4.You are not alone
One wonderful thing about the internet is that you’re able to connect to a whole world of people who have been there, done that. No judgment, no questions, just love and acceptance. If you look and are patient, you will find your tribe. I had spent six years of not knowing why. I was doing everything right. Why was my son so different? Why was our family so different? It turned out we/he isn’t/weren’t; I was just looking in the wrong place.
5.The Golden Rule is not for the weak
Treating others the way that you want to be treated includes folks with a different opinion. That includes on the internet. Yes, you have arrived at your opinion through research and careful thought. That doesn’t mean that people with opposing views haven’t gone through the same means to form their opinion. I am not saying there aren’t absolute truths. What I am saying is that the other person deserves respect, just like you. Walk away if necessary. If you don’t want people using hurtful words towards you, then don’t use hurtful words towards others.
This is a big one, so hear me out…
6. Autism is not the worst that could happen
My initial response to my son’s diagnoses was, What can I do to fix him? After spending time reading the writings of adults with autism and families living with autism, my paradigm has shifted. I realized he is who he is and it is OK. He isn’t broken. He just needed new ways to navigate the world around him. I am always telling my children that everyone is different, and that it is good. I want to be clear. If your child needs speech therapy, get them into speech therapy. If they need help to learn how to deal with sensory overload, then get them occupational therapy. Yes, you should help them be the best them they can be. Just like you would do with any child. Autism, however, is not an affliction.
Yesterday I was told how much my son’s classmate loves my son. I was told it’s because my son is always kind to him. Of all of his accomplishments, I am the most proud of the kindness and love in his heart. When I was pregnant with my son, my husband and I used to talk. We decided that out of all of our hopes and dreams for him, there were two supreme things. He would always know we love him unconditionally and he would be able to love others. I feel like in its own way, things have gone full circle. How can that apply to you?
7. No matter the path, the goal is still the same
You may have just been told your child is autistic. Maybe you are a year in, like me. Or you may be the seasoned, warrior mom who is smiling at my naivety. Whoever you are and where ever you are on your journey, my goals,(yours, ours) as a mom don’t change with a diagnosis. I still want the same things for my son. The path has just changed.
More than seven years ago we sat down in your office so you could tell us what we instinctively already knew. You confirmed that our son’s developmental delays and lack of meaningful social connections were caused by autism.
During our meeting, just days before Evan’s 2nd birthday, all we could think to ask you was what you thought he would be like when he grew up.
You immediately answered us by telling us about a boy you knew who went to a community college and had a girlfriend. (But, you added she won all their arguments.)
Seeing the multiple degrees hanging on your walls and all the scholarly books lining your bookshelves, we left your office at a prestigious hospital thinking the best we could hope for was community college and a girlfriend who is always right.
In retrospect, our question was not a fair one. You are not God. You do not have magical powers, and you do not have the ability to see into the future. A friend best described you when she compared doctors to meteorologists. You can take all your knowledge, she said, and give us your best guess. But, she said, every storm is different and every storm can take an unexpected path.
How often do you have to look across your desk at an anxious set of parents and tell them their child has autism? Based on the most recent statistics of 1 in 68, I’m guessing these conversations are quite frequent. I’m also guessing it doesn’t get any easier, no matter how many times you have to do it.
I would like to give you a suggestion on how to answer the question we asked so many years ago because this is what I needed to hear from you on October 29, 2007:
No one knows what the future will hold for any child. Yes, the journey would probably be easier and perhaps more predictable if you child did not have autism. Your job as a parent is to continue to love your child as I know you will and never ever lose hope. But, when you do, because it’s bound to happen on many occasions, don’t forget to find it again. It’s still out there and always will be. Just be realistic and focus on the journey and not the destination. Enjoy your child. Advocate for your child. Work hard for him. Push him to work hard for himself. The sky is the limit. But also know that he may not reach the sky. He may barely get his feet off the ground and that’s OK too.
So please, Dr. Aaron, instead of telling your story of community college and a girlfriend, please consider telling parents what I needed to hear at the start of my journey. You have my permission to take my words verbatim. Claim them as your own or alter them as you see fit. Just spread the message of realistic hope.
Please, share this advice with your colleagues as well because every parent of a child with special needs has had an adverse experience with a doctor or other specialist along the way, particularly when that doctor or specialist does not know how to answer a parent’s question.
You have a tough job. I don’t envy you. When parents ask you these difficult questions, answering is a hard balancing act. We parents need hope because hope gives us a reason to push forward. But while hope can be so powerful, false hope is so devastating so please, be careful.
Two days after our nation was devastated by the 9/11 attacks, I was still on edge, distraught and trying to cope with all that had happened. My son, Alex, who has autism, was 4. September 11th was a day he wouldn’t come to understand for some time.
We headed to the bank for our usual errand. Alex, like most children, can’t get enough of those ropes that guides us through the waiting line. That morning, I came in to find quite a line. I’d have chosen the drive-thru, but it was packed and I figured at least the line might move faster with so many open windows. The group that day was quiet — most people lost in their thoughts of what was going on in the world and on the news. My son, quick as a puppy on the loose, took off under one of those ropes and headed for the back office area where one could conduct loan business apart from the teller area. Before I could even excuse myself from the line, he turned off all the lights in the bank. There was a large wall plate with six or so switches, and he just swooshed them all off.
The bank plunged into darkness, and I demanded he come back to my side. A quick-thinking teller turned on the switches and marched my son over to me, lamenting that children have done that so many times. I could feel the stares. Some people mumbled quietly, making side glances and “tsk-tsking” the mother who couldn’t control her child.
Suddenly, an older woman behind me gently put her hand on my shoulder and spoke quietly to me.
“I don’t mean to bother you,” she said, “but I wanted you to know that I understand. Many years ago, I had a little boy like you have now. He’s grown now, but I went through so many times like you’re going through right now. I just wanted you to know it’s OK. Things will get better. They might get worse before they get better, but just give it time and keep doing what you’re doing.”
Then, just like that, she pulled her hand away. Hot tears fell down my cheeks, as I stood, grateful for the sunglasses I still wore. My son calmed down after a stern talking to, and the line moved. I cried when I got to the car, the relief of getting out of there and the kindness of that woman washing over me.
I never saw her again, but I never forgot what she said to me that day. It did get worse before it got better, but I wish I knew who she was. I’d like to tell her myself.
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