Update Monday, Jan. 25:On Monday morning, the blogger who created the hashtag in this article, updated her blog to say she will no longer promote its use because she does not want to add to the stigma around autism. We have updated the story accordingly.
A New Yorker article has sparked outrage in the autism community.
The article, called “Seeing the Spectrum,” published online and in the January 25 issue of the New Yorker, was written by Steven Shapin and attempts to trace the history of autism spectrum disorder and how it has been shaped by activism. One passage in particular has upset many in the autism community.
The passage reads:
For parents of autistic kids, awareness is desperately important. It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.
The phrase “black mirrors” offended many and inspired the hashtag #NotBlackMirrors on Twitter on Saturday, Jan. 23.
People have since been tweeting photos of their eyes or the eyes of loved ones on the spectrum to show that they are not black mirrors and to try and get the publication’s attention.
Let me just start with, I know how you feel.No seriously. In this past year, I have had not one but two of the most special little guys receive a whole slew of diagnoses. My life now consists of alphabet soup.ASD, GAD, SPD, EoE, OCD, ST, OT, FT, ABA, ECA, Hab, I could go on but I won’t.Besides, I’m sure you’ve heard all that in the random papers you were handed. You may not know what they all mean right now, but you will.
That’s not why I’m writing this for you, though. There are lots of wonderful materials that can help you in your first few minutes, days and weeks in the special needs parenting club.For now I’m not going to bother with that.Let’s just take a step back from the “what do I do now.” You are going to figure that out. That will come as it comes, and you’re going to do your best. That’s just how it is.
What I want to know is, have you wondered what autism feels like to your child?
What about how it feels like to an anxious little boy, one who only a year ago was nonverbal? I have. When I can stop planning, calling, scheduling (doctor’s, therapists, support coordinators, teachers, pharmacies, you name it), I stop and think. How are they really feeling? Are they as overwhelmed right now as I feel?
Today started out as one of the bad ones. You’ll hear about these; our kids have ups and downs, good days and bad days. He had meltdowns before school, his first meltdown during school, and even one with his favorite therapist.After his second therapy, his wonderful speech therapist came out to have the summary talk.
Let me just take a step back and say my son was barely talking at this time last year. He now does speech at home and school , and works on things like disfluent speech (stuttering because the words come out faster than he can manage), pronouns (he versus she) and increasing his sentence length. He is a smart boy, but he goes into his own place sometimes. She told me she knew he was having a hard time today, so she played a game. What makes me mad or sad? She went first and they had to take turns (to work on conversation skills, too).These are the four things he told her:
Sometimes I get mad when “sun gets in my eyes. It hurts. It’s too much.”
Sometimes I get mad when “it’s too loud. Noises hurt my ears. I don’t like it.”
Sometimes I get mad when “Mandy and Steph (his habilitators) make me do things that are too hard.”
Sometimes I get sad when “Boy (from his school). He’s not nice when he doesn’t listen (Listen to what). That he’s my friend. To stop being mean.”
You may think, wow, that’s sad.Yes, I wish everything was perfect and my son couldn’t name anything that made him mad or sad. But you know what, I’ll take him being able to express his feelings. Mad and sad are two prominent feelings in our house between both of our boys. There was a time not that long ago that he had hour-long sensory meltdowns because he couldn’t tell me what was wrong. I learned to read him when he couldn’t express anything. You will, too.
You know what, though, he pretty much hit the nail on the head. A boy who only a year ago could say just a few words told a non-family member how he feels. And it’s a pretty good summary if you ask me. His senses feel out of whack, he’s overwhelmed, he doesn’t always like learning new things that are hard and he is having a hard time with peers.
So new parents, please take a step back from the running around, scrambling to do this or that. We all know we have to do these things to get the help they need, but there’s another side you need to remember.Think about how your child is feeling. Ask them.
And new parent, from a parent not even that much further down the road than you, please have hope.
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Ahhh… the family road trip. When everyone gathers their devices, snacks, blankets and any other necessary items to keep us all sane while we spend 2.5 hours together… in a closed space… all of us… with no escape. Within 10 miles, the complaints begin: “Turn the heat down!” “Turn the heat up!” “Stop crunching so loudly!” “How much longer?” “Who stinks?” God help me, I hope I packed a bottle of wine and it’s easily accessible.
As we drove along, I kept watching the mile markers along the side of the road, the number increasing with each and every mile we drove. I have often seen these little green signs along the road, ticking off the miles of our journey, and wondered in this day and age, with all of our devices and gizmos like GPS, Google Maps, etc., would a time come when mile markers are no longer necessary? Would they go by the wayside with the 8-track player and the horse and buggy?
Mile markers serve several purposes:
They tell you where you are on your journey, which can especially come in handy when a squeal of “I need to pee and it’s an emergency!” is shrieked in your ear so you can quickly Google the closest rest stop near mile marker 44. Mile markers may also be necessary in a “true emergency” when someone is in actual distress and in need of assistance, by pinpointing the approximate location so assistance can arrive in a timely manner.
Mile markers typically coordinate with exit numbers. So if you pass mile marker 67, you know that exit 67 is right around the bend. You also know you saw a sign that at exit 77 there is a Sheetz, so you then can pray that the “emergency” in the back seat does not become a “true emergency” for another 10 miles.
Mile markers also tell you which direction you are heading. On most interstates, mile markers increase as you head north, or if you are traveling east to west, the mile markers increase as you travel east. Mile markers are a good reminder, in case you find yourself day-dreaming while singing to Adele, that you are heading in the right direction on your journey.
I have often described my son Ryan’s autism diagnosis as a “journey.” A journey that our entire family is taking to a place none of us have ever traveled before. On this road trip, I often find myself in the driver’s seat traveling on a road I am unfamiliar with. When I was cruising down the road with only my oldest son in the back seat (who is neurotypical), I don’t think I paid much attention to the mile markers as we traveled along, because I had nothing to compare that first journey to. But with Ryan, it seemed that at every corner we rounded, every hill we ascended, every exit we passed, I was constantly monitoring how far we had gone and how far we still had to go.
“Oh, we just passed mile marker 10, we should be quickly approaching the exit that will lead to eye contact.” Yet, when we sailed passed exit 10 and eye contact was nowhere in sight, I just held my breath for exit 11, assuming that mile marker was off by a mile or two. Exit 11 came and went, and I didn’t see behind those beautiful blue eyes.
The next mile marker assured me it would only be another 20 miles or so until echolalia got dropped off at exit 30 and more pragmatic language would join us on our road trip. Wrong again. Echolalia hung around for another 100 miles or so, and I tried hard not to look in the rearview mirror at the exit I felt certain we missed.
The pediatrician and all the childcare books assured me that around exit 52, there would be friends waiting to greet Ryan. As I slowed down to finally pull off the exit ramp, I looked up and exit 52 was as empty as the last 51 exits. There was not a friend in sight. I tried to assure myself that these friends must have taken the wrong exit and we would pass them up the road at exit 53, but exit 53 was as isolated as all the others.
As we continued down the road, I reminded myself that kids traveled at their own pace, their own speed and that not every child reached a particular exit at the exact same time as other kids their age. But when so many mile markers passed by with so few exit stops and little progress was being made, I felt terribly lost. Where was that Waze app 10 years ago when I really, truly needed it?
Looking back, it’s funny how many mile markers and exits we flew by that I have tried to forget over the years. Parts of this journey that were unfamiliar to me were scary and confusing. It was like looking at a map upside down. I was terrified that every exit we missed meant it was going to be harder and harder for Ryan to reach his destination. There were so many mile markers that pointed to exits that looked scary and abandoned because I had never taken those exits before.
It’s a lot easier to remember the many, many mile markers on this journey that assured me that my son and I were both heading in the right direction.
There was the mile marker where he wrapped his arms around me for the first time and I knew, without a doubt, that the love and sympathy exit had not been missed. In fact, I was so taken back by this sight on our journey that I wanted to take the emergency personnel exit so I could turn around and relive that moment over and over again and risk getting that fine that the sign warned me about.
Even though we missed the pragmatic speech mile marker at exit 30, we found another route to get there that just took us a little longer. To this day, I am amazed at how far Ryan has come at his own pace and the beauty I have seen by taking this detour. There is nothing I love more than hearing words come out of his mouth that I need to look up the meaning of on Wikipedia. I am so grateful for the sights I would have missed had I taken the quick route.
As we passed the soccer and baseball exits where some other boys got off, we kept going until one day Ryan found the music exit and told me to take this exit. The music exit was part of Ryan’s journey, and thankfully he knew it and has never looked back. Ryan has no regrets that he missed those other exits because he was never meant to take them.
Of course as with any journey, there were road hazards, blind spots, construction delays, detours and drivers that tried to reroute me from helping my son on his journey. But there were also beautiful roadside vistas, funny road trip stories, one-of-a-kind sights not to be seen anywhere else and amazing people we encountered along the way. People that pointed us in the right direction when we felt lost. All of these bumps in the road acted as reminders of where we were and where we were heading, without relying solely on those mile markers.
Ironically, I have been the driver on this journey and Ryan was my navigator, but, like any driver who thinks they know where they are going, I put more stock in those mile markers, in signs that were placed along the road by strangers, than I did my son. Unfortunately, more often than not, I got more caught up in those mile markers and exits I thought we should have taken than I did the person holding the map to his journey.
Ryan knew where we were all along. He knew where we were headed, and he knew how we needed to get there. I just didn’t see the signs. Not because I wasn’t looking, but because I was looking the wrong way. I spent too much time looking in the rearview mirror worried about what he missed, rather than looking at the expansive road in front of us on this journey to see what was lying ahead.
Fortunately, Ryan wasn’t keeping track of the mile markers or the exits. He has always had his eyes ahead, on the destination, and no one knows better than him exactly where he wants to go and how he wants to get there. I guess it’s time to let him drive.
The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Throughout elementary school and middle school, I experienced severe bullying due to my sensory issues and social awkwardness from autism. One of my favorite TV characters was Screech from the comedy show “Saved by the Bell.” I could relate to the goofy character, portrayed by Dustin Diamond, who like me was a target for bullies.
1. Teach your child to recognize and understand bullying.
Many children with autism may fail to realize that they are being bullied. Anthony Ianni, who has autism and played Division 1 college basketball at Michigan State University, told me during a phone interview that when he was a child, a bully he thought was a friend tricked him into sticking his tongue on a frozen, metal pole.
A bully may harass your child by manipulating him to do things he does not want to do. He can even get him in legal trouble or expelled from school. This type of bullying uses conditional friendship. The bully tells your child, “I won’t be your friend anymore unless you steal this video game.” Educate your child to know the difference between a friend and a bully.
You can help prevent your child from being a human target by teaching him or her not to react to bullying and instead tell an adult. Bullies feed on reaction. If your child does not react, the bully will quickly lose interest and search for another helpless victim. As Richard Maguire, who has Asperger’s syndrome, wrote, “Bullies are inadequate people; they cannot deal with confident people who will not be controlled by them.”
3. Teach your child the danger of cyberbullying.
An example of cyberbullying is a bully emailing a message to your son pretending to be a girl he likes and asking him on a date. When he arrives at the movie theater, the bullies are waiting for him. You can help prevent cyberbullying by monitoring your child’s use of the computer.
5. Educate teachers, parents and students on disabilities and acceptance.
Bullies tend to make fun of children they perceive as different. An understanding of disabilities and autism can help create acceptance. If teachers and administration confront bullying, students will do the same. Awareness and acceptance helps students to have the courage to speak up against bullying.
Katie Mecham Celis, whose son has autism, wrote in a post on Facebook, “[Children with special needs] face being pushed away by kids at school, at church and in their own neighborhoods. I know from vast experience with these children and with typical children that when parents constantly teach acceptance and love toward those who are different, bullying happens considerably less.”
The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list.If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
When I lost my daughter many years ago to congenital heart defects (CHD), it never occurred to me to write. She was so medically fragile that I don’t think I had time to think about much more than keeping her alive from day to day. With my son, Drake, things have been different. Drake, who has autism, is so healthy and full of life. Despite anything we have faced or will face, he has brought such healing to my husband and me. When you’ve lost a child and survived, it takes quite a bit to rattle your cage in the future.
My instinct has always been spot-on when it comes to my children. Drake was no exception. I knew before Drake was a year old that something was different. I think after the initial shock of an autism diagnosis and all the “what ifs” that come with it, most parents just get into a groove and do what they need to do for their kid.
Someone said to me several months ago: “You are self-absorbed.” “I understand why Drake is the way he is.” “Thankfully, he will never be able to learn from your example.”
Typing those words gives me an accelerated heart rate.
These words have popped in my head on a regular basis. The words were thrown out in a complete rage, but they were unforgettable words nonetheless. Words can be powerfully binding.
Since that moment, I have pondered many things. When people are angry, they often speak the truth. I believe this person truly believes I am self-absorbed and have somehow caused Drake’s autism. I assume this person also has no understanding of autism and believes Drake will not have the awareness to understand what a horribly selfish person I am. It all makes me laugh and breaks my heart at the same time.
So, the last several months, I have reflected on many things. Am I self-absorbed? Why do I write and have a Facebook page about Drake?
I do it for me. I’m doing something to make me feel better.
Is that selfish? Does that make me self-absorbed? I certainly hope not. I do it because it helps me connect with a community of others like me. It helps me continue to understand my son and how he learns and understands the complicated world around him. I do it to stop the mind-numbing fear that grips me from time to time. Writing helps me heal, but there is more to it than that.
I want people to see this little boy is more than a diagnosis. People must understand that Drake is aware of much more than they realize. He doesn’t talk, but he understands. He doesn’t always look at you when you speak to him, but he hears you. I want people to share in our joy when he makes progress. Why? Because Drake making progress gives other parents hope. I was once a parent of a newly diagnosed child. I wanted desperately to read about hope and good futures. I want people to see how being a special needs parent can be hard, but it’s also humbling, inspiring, joyous and extraordinary.
I am doing everything humanly possible to help Drake gain independence, be self-sufficient and understand this complex world. Sometimes writing helps me make sense of it all. When I write, I am exposing my feelings, something I have trouble doing verbally. It leaves me feeling naked, raw, humble and at peace.
Being Drake’s mama is part of my calling. My calling throughout life has been difficult, but it has also been beautifully blessed. If being an advocate for Drake, sharing our journey and fighting with everything I have to make this world a more accepting place for him makes me a self-absorbed person, then I am — and I’m proud of it. My prayer is that one day Drake will know I did all I could to make sure his future was full of nothing but happiness. Somehow I don’t think my mama-lovin’ little guy will ever think I am a horrible person.
As a fellow blogger reminded me: “Don’t dim your light just because it’s shining in someone else’s eyes.”
It’s hard not to notice when a child is screaming and crying in a store.
I’ll admit it: Before I had kids, I would see or hear that in a store and cringe. Many thoughts went through my mind…
“Why do they have him out so late?”
“Why can’t she quiet her down?”
“Looks like somebody is tired, he obviously needs a nap.”
“It’s obvious they indulge her too much.”
I was totally that person!
I don’t believe in karma or “what goes around comes around.” I believe in lessons, life lessons, and I’ve learned and been taught many of them.
I’m that mom now, the one a younger version or an older, childless version of me is silently judging, or quietly and sometimes not-so-quietly talking about in the grocery store.
My child is the one screaming and crying and, yes, sometimes kicking, hitting and thrashing.
I know I’m being silently judged. I feel your eyes on me and on my child, and I have all kinds of feelings in that moment.
First, I’m thinking, Make sure you catch her if she throws herself to the floor or the parking lot, and be ready to chase her if she bolts off, and if she bolts off, Make sure you grab her older sister and keep her safe, too.
Second, I’m thinking, Where is the closest exit and where is a good place to leave this shopping cart if it comes to that, oh and Don’t forget to have the car keys ready in case you have to carry your 35-pound toddler out the door… you need to be ready, and make sure you have a tight grip on her slightly older sister… safety first!
Third, I’m thinking of the map I made in my head of the parking lot and how to get both of my children safely into my vehicle, while carrying my visibly, physically, emotionally upset autistic 3-year-old who in that moment is stronger than me, while holding onto the hand of her 4-year-old sister.
Lastly, I’m thinking, How am I going to get groceries now?
So no, I’m not thinking about you and what you are saying about me, my child and my parenting skills.