My Letter to an Autistic Adult

*I decided to write this letter after reading a comment written by a self-identified autistic adult advocate.  According to the comment that she left on the forum, her mission is to educate, but lately she feels like giving up because so many people attack her words rather than taking her message to heart.  I want to her to know that, as a parent of an autistic child, I hear her and I appreciate her words and insight.  Now, more than ever, the autistic perspective is needed.

Dear Autistic Adult*,

We have never met before in person, but I want to thank you.

First, allow me to introduce myself.

I am a mom of an amazing seven-year-old named Ben.  I’ve changed his name to protect his right to privacy. 

Ben is autistic.  I am not.

When Ben was first received his autism diagnosis, I became shamefully aware of how little I really understood about autism.  I was a novice in the world of disability, but I quickly dove into researching anything I could find on the subject.  I quickly realized that there is a lot of conflicting information out there.  For a short while, I let the so-called experts scare me with their doom and gloom prognosis.  During that time, I allowed myself to give in to worry and doubts about my child’s future.

Somewhere early into my journey, I discovered you.  I came across your blog.   I read your comment in an autism forum.  I met you through a Facebook page devoted to autism acceptance.

Even though it was hard to hear, I listened to your words.

I realized that, even if you and my son come from different points on the autism spectrum, you understand his neurology in a way that I never can or will.  You have lived his journey and are speaking from a place of experience.  You are the true expert- more than any doctor with a PHD ever can be.

I listened and realized how much I still needed to learn.

I realized my perspective was off. 

I realized I was busy feeling sorry for myself, but it wasn’t about me at all.

This was about him.

I listened and began seeing my son’s autism in a brand new light.

You taught me that autism is not a disease and therefore does not need a cure.

You taught me to steer clear of those promising cures and to be wary of organizations without any autistic representation on their governing boards.  Read more about why I won't support organizations such as Autism Speaks here.  

You taught me to love the child who I have rather than mourning the loss of the child I had expected him to be.  Read Jim Sinclair's eloquent post called "Don't Mourn for Us" here.  

You taught me that his autism permeates every aspect of who he is.  It is as much a part of him as his gender or his eye color.  You cannot separate autism from the person- nor would you want to, because even though autism brings its challenges, it also brings amazing strengths.  And all of us have challenges, whether we are autistic or not. 

You taught me about ableism  and inspiration porn  and the dangers of therapies that seek to make a child indistinguishable from his peers.  I learned about the insidious nature of quiet hands. 

You taught me that no one “grows out” of their autism and the price the body pays when it tries to “pass” as normal for too long. 

You taught…and I learned.

I learned about identity-first language versus person-first language and why most prefer the term "autistic" to "person with autism".  I changed the way I used those words and explained my reasons to my colleagues when they asked why. 

I’ve learned to ask for consent when writing about my son’s experiences.  I’ve realized that they are his stories to tell more so than my own.  My son is not an object to serve as a teachable moment, an inspiration, or something to pity.  He is a child who will someday grow into an adult.  I have to respect his privacy first and foremost.  

I realize that, for too long, parents like me have controlled the narrative about autism, and the autistic perspective was missing entirely.  I hope this continues to change.

I know it hasn’t been easy for you to share your perspective.  I know that parents have said harsh and hurtful things to you.   I’ve seen so many online forums become battlegrounds rather than safe spaces.  I know it must be tiring to seek to educate- to explain the same message over and over- as you meet new parents who don’t “get it”, as I once didn’t.  Sadly, I do not see an end to the great divide in our community any time soon.

But I’m here to tell you that it is worth it. 

Because, by educating me, you are making me a better parent for my child.

You are making me a better teacher for the children I educate.

You are making me a better writer, advocate, and human.

There is so much work to do. 

Please don’t give up just because the divide seems insurmountable.

Please know that there are other parents like me who are quietly listening and learning.

You have the power to change perspective. 

Because, though I may not share your neurology, I share your mission. 

I share your desire for respect and equal access to education, employment, and opportunity. 

No exceptions. 

Respectfully Yours,

Jessica

The Part About Bullying I Never Considered

This quote comes from the book "Sadako and the Thousand Paper Cranes."  The quote reads, "This is our cry, this is our prayer, to build peace in the world."  Sadako's mission of peace resonates me as I consider the need for kindness on our world.

It is bedtime in our house.  Teeth have been brushed, books have been read, and it’s time to turn off the lights and tuck Ben into bed.  Ben prepares to say his nightly prayers.  For the past few weeks, his prayers have taken on a new fervor.  Tonight is no exception.  “God, please help tomorrow be a good day.  Please help me be good.  And please keep the bucket dippers away,” he pleads.

            Bucket dippers are his word for the kids at school who dip into his metaphorical bucket.  His class read a story called, “How Full is Your Bucket ” by Tom Rath.  The story talks about filling people’s buckets by doing nice words and deeds, and how doing mean things and saying unkind words dips into someone’s bucket.

            Ben encountered a group of older kids, aka the "bucket dippers," at school during the after care program.  It’s the time in the day when kids from different grade levels mingle in the gymnasium.  Due to the loudness of the gym, Ben wears noise cancelling headsets to help him deal with the sound.  On this particular day, they pushed him down and tried to take the headsets.  And when he started to cry, they called him a baby.

            When Ben told me what happened,  I immediately talked to the teacher and the principal.  The adults intervened right away.  The boys had consequences.  We created safe spaces and new options for Ben in the gym.  And, to the best of my knowledge, these “bucket dippers” haven’t physically or verbally bothered Ben in weeks.  And yet, every night Ben still prays to God to keep the bucket dippers away.

            As a classroom teacher I’ve certainly dealt with situations like this in the past with my own students.  I’ve mediated in cases of bullying and have dealt out consequences to the bullies while counseling the victims.  And yet, it hasn’t been until my own child has been on the receiving end that I have realized just how deep the psychological wounds can scar.

            I never considered until recently just how much a child, such as mine, who tends to perseverate and focus on something over and over, will relive the hurt and pain again and again, to the point where even if the actual bullying has stopped, it is still alive and real in the person’s mind.  This is the part of bullying that I never considered.  I’ve spent lots of time talking to kids about how to handle the actual event, but not nearly enough time thinking about the after-effects.  The part where trust is rebuilt.  And this was a one-time incident (I think...I hope...).  I can only imagine how bullying impacts the child who deals with this every single day.  

            The situation with the bucket dippers has opened up many conversations about how Ben can stand up for himself in a strong but respectful way.  We read the book, “A Bug and a Wish” by Karen Scheuer.  The book was recommended by my friend who happens to be a school psychologist.  The book talks about telling the bullies what “bugs” you and what you “wish” they’d do instead.  We practice saying those words so that, if the situation arises again, Ben will be ready.  We’ve talked about going to the grown-ups for help when necessary.  We’ve talked about walking away.  We’ve talked about all of those things, and yet he still worries and he prays.

            As I snuggle next to my little boy, I wish that I could shield him from this world, a world is not always a friendly and welcoming place and getting scarier and more uncertain by the day.  Unfortunately, the road for him is even more challenging because his differences are magnified, both in the way he speaks, the way he reacts to difficult situations, and the tools he uses to cope with his world.  Even though as a society we preach embracing differences, the hard fact is that many people are scared by differences.  People don’t know how to handle different, and so they keep it at an arm’s length or poke fun of it.

            I naively hoped that my son would be spared from the harshness of bullying.  I hoped that his differences wouldn’t set him apart- that his sweet nature and amazing personality would be enough.  

            And so, as I plant a goodnight kiss on his forehead, I say a prayer of my own.  I pray for strength to guide him through the days ahead.  I pray for the wisdom to know the right words to say to him on those days when his heart feels broken.  But, most of all, I pray for a world filled with way too many bucket dippers and not nearly enough kindness.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

Active Listening Reimagined

This is a typical representation of how we teach children in school to listen.  Is this the only way listening can look?

What does listening look like for a child in school? 

Is it “criss-cross applesauce, hands in your lap?”

Is it “one two three, eyes on me?”

In school there is little debate about how listening should look. 

We teach children to practice “whole body listening” and ask them to listen with “your eyes, ears, and heart.”

We explain that when we listen, our bodies should be facing the person speaking and we should be looking with our eyes.

When a child fails to comply with this request, we tell the child that we will wait until they give us their full attention.  We insist they “look into our eyes.”

We think that these are the behaviors we should expect from our learners.

And yet....for some listening looks very different.

Ben’s OT once said something that has stuck with me. 

She said that this idea of eye contact is a social construct.

She taught me that our eyes are not our ears.

She explained that for some children, like my son, struggling to maintain eye contact takes so much energy and attention that focusing on the directions or the task at hand becomes nearly impossible.

I learned that the kid who falls out of the chair in class was most likely listening because he couldn’t focus on listening and sitting in the chair at the same time.

I have learned that for some children, movement actually enhances listening and learning, and forcing stillness actually causes learning to diminish.

I have heard autistic adults explain that looking into someone eye’s feels roughly the same as being pricked in the eyes with hot needles.

Philip, a young boy with sensory needs and autism, explains it this way.  Philip is nonverbal, and communicates through typing.  “I am letting you know about eye contact. My eyes see very well, but each day I see too many little petty details. I look away to not get overwhelmed by a lot of little bits of information. I watch things that a teacher or person I listen to tells me to watch. This helps me concentrate on what I should be focusing on. I can search for a teacher’s voice to try to focus on. I am academically learning best when I sit side-by-side with a teacher. A seat on the side keeps me focused on your voice and not on visual distractions. I am assessing many sounds too. I have to erase some stimuli to access my answers to people’s questions and meet their demands. That is why I don’t make eye contact. I am always listening. I listen a lot to voices. I so love when people talk to me and are not talking like I am not there. I am active because I am unable to feel my body well. People think I am being rude but I can’t help it. I need to move to feel my body.”  You can read more of Philip’s words here.

And yet, so many of us insist on eye contact because we believe it helps the child listen. 

We believe that eye contact is an essential life skill.  After all, in our western culture, those with shifty eyes are viewed as untrustworthy.

My ultimate goal is for my son to be an independent, capable adult who makes a worthwhile and satisfying contribution to this world.

And so I grapple with things like eye contact.

Is it important to insist on eye contact from my son so that he can better “fit in”, even if it is distracting to his ability to listen at best and painful to him at worst?

Forcing a child’s body to comply, even if that body part is the eyes, just doesn’t seem right to me.

And so, what does listening look like for my son?

Every year I explain to his teacher that Ben probably won’t look like he’s listening when he is sitting on the carpet for a read aloud, or when he’s seated at the table at small group time.  He may not always make eye contact or sit perfectly straight in the style of criss-cross applesauce.  Even though he appears to be disengaged, I ask them not to assume that he is not paying attention.  Ask him a question and see if he can answer.  Most likely he can.

Ben is a sensory kid.  The environment around him can often be over-stimulating and, at times, overwhelming.  It’s hard for his brain to filter out the extraneous sights, sounds, and smells.  Sometimes the only way he can focus on the teacher’s voice is to look down so as not to see all the extra distractions around him. 

Please don’t be fooled because listening looks different for my child and those like them. 

I am blessed that Ben has had teachers and therapists in his life who get it.

Ben sits on a wiggle seat in class.  He uses a white board during turn and talk to visually record his thinking and his conversations.  He has the opportunity to sit on a T stool or a regular chair during group time.  In short, he is allowed to learn in the ways that fit him best.

The other day, Ben’s teacher told me that he is a great self-advocate.

I can think of no higher praise.

I am grateful that my son is finding appropriate ways to ask for what he needs as a learner.

There are many ways to listen and to learn.

Our eyes are not our ears.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

Why I'm Not Worried About My Autistic Kid's Latest Passion

 

“If a child with autism has voluminous knowledge about a single subject, why is that an ‘obsessive interest’ rather than ‘expertise’?”  -Ellen Notbohm 

Today our family attended a rare coin show for the first time ever.  It was a chance encounter.  We decided to take Ben to a coin store and the dealer mentioned that we should check the event out.  It was only a few miles down the road, and so we did.  Ben has been collecting coins religiously for the past few months.  Not just any coins- state quarters.  The passion started this summer while we were in Indiana visiting family.  We took a road trip to Ohio, and the moment we crossed over the state line and Ben saw the huge “Welcome to Ohio” sign, his new passion was born.  It suddenly clicked in his mind that our country is made up of states, and these states are connected through their borders.  He was hungry to learn more.  And so, he has joyfully delved into learning everything there is to know about the states.  This love has extended to out of state license plates, US landmarks (think Mount Rushmore and the St. Louis arch), with his pride and joy being his state quarter collection.

            
Some might say that Ben is obsessed with the United States.  Autism experts often point to “rigid obsessions” as one of the hallmarks of the spectrum.  Some believe that an autistic obsession is harmful and should be stopped so that the person can move on to other, more “socially-appropriate” or “age-appropriate” subjects.  I tend to disagree. 

And here are some reasons why I think that becoming an expert on a subject is a cause for celebration rather than concern.

1)   It opens doors to learning

I’m a teacher, and over the years I’ve read lots of school mission statements.  Usually a school’s mission talks about inspiring kids to have a “passion for learning.”  It’s no secret that when kids are motivated to learn, their engagement increases, as does their achievement.  In Ben’s case, his love of learning about the United States has launched us into a joyful study of US geography.  I would wager that he now knows more about US geography than most adults.  He can build a US puzzle in under a minute.  He spends hours on Google Earth navigating and studying landmarks.  One day he discovered Washington DC on Google Earth, which led to conversations about our United States presidents.  He is convinced that we need to take a trip to DC when he becomes a second grader (and how can I argue with that logic?).  His explorations of Google Earth has led to discussions about other countries in the world, oceans, deserts, islands, cardinal directions, travel time between states, and so much more.  His love of state quarters has spurred many talks about money, currency, and the value of common versus rare coins.  We have watched videos on how currency is made and he has contemplated future careers for himself.  We have talked about vocabulary terms such as mint condition, borders, and currency.  All terms I would not normally discuss with a six year old, but they naturally progress in our everyday conversations through his questions and his zeal to learn more.

2)   It connects him with the community

It’s not every day that you see a six year old with a passion for coin collecting.  It’s fun to watch the reactions of grown-ups in public.  On one particularly memorable trip to Subway, Ben received the change from the teenage girl and he jumped into the air with glee.  “A MISSOURI quarter.  Thank you SO much!!”  The girl could not stop smiling.

The deal we’ve struck with Ben is that when we use cash in a store or a restaurant, he gets to keep our state quarters.  Of course, now he wants us to pay with cash everywhere we go.    He handles all of the money transactions for the family.  He’s getting good at asking politely if the cashier has any state quarters in their tills.  They are always happy to look for him, and he’s learning to handle the disappointment when they don’t have it.  He takes it in stride.

Finding a state quarter on a trip to the store is fun, but it was nothing compared to the joy he felt today when he entered the coin convention and spotted rows and rows of rare, gleaming coins.  His eyes lit up like a kid at Christmas.  As I looked around the crowded convention hall, it was clear that he was the only kid in the building.  As he approached each table, studying the cases carefully, the vendors would look up in surprise, especially as he started naming the coins he recognized from the Internet.  Many would over and talk to him and were amazed that he could carry on a conversation about their coins.  They were clearly pleased to see a young person taking such an interest in their collection.  Many passed on tips and advice.  Some would even take coins out of the case and let him hold them.  One asked when his birthday was and dug until he found a coin from his birth year, giving it to him at no charge.  He would not accept our money, instead making Ben “pay” by promising to “do what Mom and Dad say”.  My heart warmed as I watched my little boy become accepted into a community as their apprentice.  He left with his pockets jingling and a huge smile on his face.

                                                                                                

3)  It makes him happy

This is perhaps the most important reason of all.  How many of us still find the time for the things in life that bring us true happiness?  When Ben finds a new quarter, his whole face lights up.  He may not be interested in Teenage Mutant Ninja Turtles or Avengers or other things that six-year-old boys typically enjoy, but his interests are no less valid.  And, by cultivating his interests rather than pushing him towards something that is more “socially typical”, we are allowing him to express his true self, and, by extension, teaching him to be happy in his own skin. 

I have no desire to change my son.  If anything, I want to be more like him when I grow up. 

How He Learns

        

Ben is practicing his writing using the stop light letter technique invented by his OT.  

            This year Ben has started first grade at yet another new school.  This is the third new school he’s attended in as many years.  I know how important stability is for a child, and I never imagined I would have moved him as many times as we have already.  However, it was more important to find a school that has the flexibility to teach in a way that Ben learns best.  We are thrilled to report that it looks like we have finally found that place.  This meant a move to a private school, which wasn't an easy choice since I'm a public school teacher.  You can read more about the reasons behind our decisions here.

            From the first week of school it was clear that Ben felt comfortable at his new school.  On Friday of the first week of school, he told me that I had found a school that is a perfect match for him.  After the second week of school he told me that he wants to stay at his new school forever. 

            These comments comfort and reassure me, but I still find that I can’t completely relax.  Ben’s new school is not without its challenges. The indoor gym at the school makes the children’s voices “loud and echoey” and Ben must wear noise cancelling headsets to tolerate the amplified sounds.  “I hate when the boys and girls scream,” he tells me.  His after school teacher came up with a plan that allowed him to play just outside the gym in the lobby with a friend or two, and that has helped enormously. 

            Situations like these that make me realize that he has grown old enough for the talk.   There is much debate in the special needs community about the proper time to let your child know about his or her disability.  Some argue against telling the child at all, while others tell their child from the moment of his or her diagnosis.  I have read articles written by special needs adults who were not told about their disability until they were much older (or- worse yet- they discovered it on their own by coming across the paperwork), and they describe the resentment that they feel because they knew that they were different but didn’t know why.  They believed that there was something wrong with themselves because of these differences. 

            I never want Ben to have to feel that something is wrong with him just because he has different needs.  I want Ben to understand how his unique brain works and both the strengths and challenges that it brings him.   I want to talk about it in a kid-friendly way.  I’m not ready to put a label on these differences yet and call it autism or sensory processing disorder.  I will use these terms when the time is right, but for now I plan to have the conversation in a way that makes sense to him.  It will no doubt become multiple conversations that unfold over time.  I have patiently waited until the time when he was ready.

            I found the perfect moment one Saturday morning when he and I were out running errands.  I decided to stop off at our neighborhood Starbucks.  I bought him his favorite special drink- a vanilla bean Frappuccino (a caffeine-free treat) and we headed outside to sit at an umbrella table and watch the cars drive by. 

            After we settled into our spots, a long comfortable silence filled the space between us.  I learned long ago to respect the silence.  I could tell that it wasn’t just any silence.  Inside my son’s head, his thoughts were swirling and he was searching for just the right words to shape his deep thoughts.

             “I don’t go to my old schools anymore,” he mused, beginning the conversation in the middle as he so often does.  Or, more accurately, picking up on a conversation that we had begun days before.  “Those schools were not a match for me.”

            I paused, considering his words, and deciding that this was the moment I had been waiting for.  “And your new school is a match for you?”

            “Uh-huh,” he agreed.

            “Do you want to know why it feels like a match?” I asked.

            Ben met my gaze with a piercing stare of fierce concentration.  He nodded.

            I proceeded to explain how our brains are like machines.  Every person’s brain is different.  Each of us has things that we are good at and things that are hard for us.  I told Ben that his brain is excellent at remembering numbers and facts like his states and capitals.  However, his brain can sometimes get stuck and stop working well, such as when a room gets too busy or filled with noise.  It’s also hard for his brain to work when someone is telling him things to quickly.  This can make his brain shut down.

            “It’s like a traffic jam in my mind,” he agreed.  “I don’t like traffic jams.”

            I told him that his brain remembers things better when he sees pictures of what he is learning or when he can try things out with his hands.  However, his brain forgets easily if he only hears words.

           “I love stations,” he piped up.  “They help me learn.  My new school has lots of stations.   And I love science too.  Especially the experiments.”

            We talked about how every brain is different.  One is not better than the other.  We also talked about how every school is different, and some schools that may be a match for some boys and girls may not be the best match for him.  Ben has many friends who still attend these schools, and I wanted him to understand that there was nothing wrong with these places.  Lots of great learning is happening there, but his new school teaches in a way that his brain learns best.  Ben nodded.  He understood. 

            We talked for awhile longer about his sensory needs.  We talked about how things seem louder to him than they might seem to others.  We talked about how he is bothered more easily by noises and what to do when things become too much for him. 

             Ben and I talked like this for ten magical minutes.  It was the longest conversation that he and I have ever had.  As I think back on it now, I’m amazed at how easily the conversation flowed.  I didn’t have to steer the talk, nor did I have to probe him for information, which often causes him to shut down and turn off the conversation immediately.   In the past Ben hasn’t wanted to talk about school but on that sunny Saturday morning he shared details about his class with me that gave me a glimpse into his academic world.
             I am grateful that we have found a school that is so suited to his needs.  I wish every child could find such a place to learn and grow.  Ben is fortunate to be surrounded with so much love.  He has left his imprint on the hearts of those who have worked with him, and we appreciate each and every person who has helped him grow into the amazing boy who is is today.  

            I know that I cannot predict what the future will hold.  I know that I cannot make myself stop worrying completely, but what I can do is to teach Ben to know himself well enough to be his own advocate.  The more he can articulate his needs in a respectful way to the adults in his life, the more chances he will have for success.  And I know he is well on his way.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up