Why I Will Not Speak for #Autism Speaks

           

Ben is gently brushing his new bunny that he made at a recent trip to Build a Bear.  Build a Bear is one of the companies who have withdrawn their support of Autism Speaks.

             Recently a colleague of mine approached me about an opportunity that she had heard about.  She explained that there was an autism group getting ready to do an awareness walk, and they were looking for input from educators who were also parents with children on the spectrum.  My initial reaction was excitement, but then I paused and added, “I’d love to participate in this, but if the organization is Autism Speaks, I’m going to have to pass.”  She wasn’t sure of the name of the organization, so she said she’d find out more and get back to me.
             I know it must seem strange to those who are new to our autism community to think that I would dismiss a charitable organization devoted to the field of autism, so I thought it’s probably time that I post here about why I cannot support Autism Speaks.

            If you know me in the real world, you know that I’m a pretty even-keel person.  I am a moderator, a person who seeks multiple perspectives before making a decision, and I rarely dismiss any point of view.  I try to be thoughtful and reflective.  As my mother would say, “I seek the balance in life.”  But, on this matter, I feel I have to take a stand, and I’ll explain why.

            Autism Speaks is by far the largest charitable organization out there right now in the autism community.  Celebrities endorse it.  Companies sponsor it.  (Luckily Build a Bear recently withdrew their support!) Their annual walks attract millions of participants, many marching with T shirts that have puzzle piece signs (their signature logo). Places all over the world such as the White House and the Empire State Building turned on blue lights in April as part of their “light it up blue” campaign that sought to raise autism awareness. 

            Autism Speaks is so mainstream that their ideas are often the first ones that families who are new to the world of autism read about.  A quick Google search about autism will lead you directly to their site. 

            Please understand- I fully support autism acceptance.  Autism Speaks supports raising autism awareness.  This may seem like a small difference in terms, but, trust me, it is not.  Sadly, the approach that Autism Speaks uses to raise awareness has caused the autism community to become more polarized rather than bringing us together and valuing differences.

            On the website for Autism Speaks, you’ll find this description of the organization.  “Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we've been able to accomplish and look forward to continued successes in the years ahead.”

            So why am I against this organization that has such strong support across the country?  Others have written on this topic before, much more eloquently than me.  You can read some of these posts here and here.  

            When I first started learning about autism after my son’s diagnosis, I read many books and watched countless videos on the subject.  It quickly became clear that our community is a community divided.  Autism is a spectrum and autistic individuals have characteristics that range from completely nonverbal and requiring extensive support to meet their basic needs all that way to completely verbal and fully capable of independent functioning, but requiring extra support in the areas of communication, sensory processing, and/or emotional regulation.  Each individual is unique, much like a snowflake.  No other exceptionality has so much variance within it.  My son falls on the more verbal, independently functioning side of the spectrum.  I cannot speak for the experiences of others whose needs differ from those of my son’s. I certainly do not seek to minimize the challenges that come with meeting the daily demands of caring for a child who needs this round the clock support.  These children grow up to become adults who may continue to require this same level of care, and certainly services need to be in place to support these individuals.   

            But (and this is a very big BUT), even those individuals on the most, for lack of the better word, severe end of the spectrum require the same level of dignity and support as does my son.  Just because a person cannot talk does not mean that he has nothing to say.

            And while I cannot speak for the experiences of others, I also cannot speak to my son’s experiences.  Only he can truly explain what it is like to be Ben.  I am not autistic.  I simply live with a person who is.  Autism Speaks, as it says in their name, speaks with a great deal of authority for those on the autism spectrum every single day.  However, Autism Speaks is speaking on the behalf of autistic individuals without ever consulting them first.  I’m going to make a broad comparison here. This would be a little like me speaking for a men’s group (Let’s call the group Men Speak) because I live with my husband and therefore know all there is to know about men.  You can see the absurdity in that.  I’m a parent of an autistic child.  I care for Ben every day and I know him very, very well, but I’ll never truly know what it feels like to be Ben.  This is why Autism Speaks absolutely should have autistic adults as part of their counsel.  They did have one person, John Elder Robison (author of the book "Look Me in the Eye"), but he resigned for reasons that you can read about here.

            If Autism Speaks did bother to ask autistic adults how they feel about the organization’s message, I don’t think they would like what they have to say.  If you were to ask an autistic adult how Autism Speaks makes them feel, they would most likely tell you that hearing things like autism is a tragedy and they are a burden to society makes them feel like they are worthless too.  Words can be very, very damaging, and for those who often think on a very literal level, this has the power to be absolutely devastating. 

             Autism Speaks views autism as a tragedy.  They have said so in their marketing campaigns.  One very famous commercial published by Autism Speaks called “I am Autism” makes autism out to be the bad guy stealing away our children from us.  It was actually produced by the same person who directed third Harry Potter Movie.  In the film you hear a deep, ominous voice narrating, saying things like  “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”  Autism Speaks uses fear tactics and inflammatory words because they believe that they need to scare the community at large into supporting the cause.  They use terms such as “autism epidemic” and “devastating” to garner support.

            Autism Speaks believes that autism is a disease that needs a cure.  They spend the overwhelming majority of the millions of dollars that they receive on researching to find a cure for autism.  Only 4% of their budget goes to “family services” to support the autistic children, and especially adults, already in the community.  And this is a huge problem because, as I mentioned before, a growing number of children are becoming adults who will require community supports such as housing, care, and job-related training and skills as needed. 

             We have to watch what we say around our children.  The former vice-president of Autism Speaks said on a PR video “Autism Every Day” that she has contemplated driving her car off the bridge with her daughter in it because of the challenges that her daughter brings.  She said this with her daughter in the room.

            Suzanne Wright, on of the founders of Autism Speaks, recently spoke at the Vatican and, in her speech, compared autistic individuals to lepers and “the least of us”.  Jess from “A Diary of a Mom” writes about this particular speech here.

            Can you see how I would not want my son hearing any of this?  My handsome, amazing little guy is not a burden, nor a leper, nor a tragedy.  He does not need to be cured as he is not sick.  If he had cancer, I’d be looking for a cure, but his brain is simply wired differently than mine, which causes his approach to the world to be different than many are accustomed.  This does not make him “the least of us.”  If anything, I’d argue that he is “the best of us.”

            Suzanne Wright would tell me that her organization is not talking about my son when they speak of the tragic epidemic (though she would conveniently use his diagnosis in her calculations of the numbers of those on the spectrum).  She would tell me that the tragedy and the devastation are referring to those on the more severe end of the spectrum, those who require constant care, those who are nonverbal or extremely aggressive or completely unresponsive to others and lost in their own world.  To which I would say this- don’t those children deserve the same level of respect as my son does?  Those children are also not a tragedy.  They are precious children.  And, whether they show it or not, they are also listening to what we are saying about them.  As they are becoming adults, they are speaking up and we are realizing that they heard and internalized so much more than we ever could have imagined when they were children.  They don’t deserved to be driven (or thrown) off a bridge.  They need support.  Their parents need support.  When they become adults they may continue to need supports.  But, sadly, most of the conversation (and finances) are not centered around creating opportunities and services for those on the spectrum.  This is what scares me most.  We’re so busy trying to find a cure and scaring everyone that we’re not spending time nor nearly enough funds towards finding solutions to the very real needs that are here now.

            So that, my friends, is why I cannot and do not support Autism Speaks.  There are many, many more examples, sadly, of the damage that this organization has done and continues to do.  I know that they do good as well.  They do offer scholarships in communities and job opportunities.  But I cannot associate with an organization that looks at my son, and those like him, as lepers and tragedies.  If you choose to support Autism Speaks, I respect your decision, but I wanted you to be informed as to why I cannot support them.   
            
             If you are looking for an organization to support, I would recommend  The Autistic Self Advocacy Network.  They are run by autistic people, for autistic people and their families.

Ten Reasons Why I love family game night

Ben is looking awesome in his shades during Family Game Night.

This past month has been a busy one for me.  I started teaching night classes at the local college, and this is in addition to my regular day job at the elementary school.  This means that for three nights a week, I drop Ben off at school in the morning and don’t see him again until he wakes up the next day. 

While teaching at the college level has been a dream come true for me, it means that family time has been severely compromised.  I’m glad that Ben and his dad are having special bonding time, but I miss our evenings together.

And so we decided to start a tradition in our home that so many families enjoy.

We instituted family game night.

Ben loves his games so much that now, every night is family game night.

His current favorite games are Trouble, Hungry, Hungry Hippos, and Monopoly Junior.  Ben has always been a number nut and he has a special love for money, so he connected to Monopoly Junior right away.  He is proud that his skills have advanced to the point where he can play and also be the banker.

As I graded papers tonight, I listened to Ben and his dad playing Monopoly in the background.  They talked, laughed, groaned at times, and cheered each other on.  It got me thinking about the many benefits that I’m already noticing from game night.

So here they are (in no particular order)…

1)   Games promote family bonding

During the school year, our family has precious little time together during the week.  After homework and dinner, we have a couple hours max before bedtime.  Too often we spend this time on our electronic devices (the boys on their ipads, me on my laptop) rather than conversing with one another.  Game time gets us at the table, looking at each other, and talking to each other.  No cell phones allowed.  This screen-free time is something our whole family needs.

2)   Games encourage turn taking

Last year, Ben’s speech therapist told me that board games are a great way to practice turn taking, which is one of Ben’s goals.  I remember walking by during a therapy session last year at school and watching Ben’s small group playing a game.  During another player’s turn, he was completely disengaged, staring off into space or fidgeting impatiently.  Now during games Ben is very curious to watch other player’s turns, because he is learning that each player has a role in the game and that other players may make a move that could potentially help or hurt his play.  For example, when we play Trouble, I may roll a six and knock him back to start or I might land on his space in Monopoly and give him money.  Turn taking also encourages patience.  We always roll the dice to see who goes first.   Ben is becoming much better at waiting for his turn.  He knows the order of play and, while he might be excited, he rarely becomes agitated when another player takes his turn.

3)   Games teach critical thinking skills

I recently read a very thought-provoking article that talked about how we aren’t allowing children enough time for play.  We forget that play can be a form of work.  Even though I harbor a guilt that I’m not practicing sight words, reading, and math skills enough with Ben at home, playing games helps to build his academic skills in a fun and creative environment.  Monopoly is a great game for encouraging math skills.  He gets practice with counting money, dice reading (called subatizing), strategy, and literacy (reading those Chance cards).  Games like Scrabble Junior also encourage literacy and spelling, while the game Trouble fosters strategic planning while also teaching him to deal with unexpected setbacks (aka getting sent back to start by Mom).

4)   Games foster sportsmanship

When we first started game night, Ben (like so many children) had a difficult time losing.  He would become very upset and would want to play again immediately so he could win.  We’ve used game night as an opportunity to practice being good sports.  After each game, we shake hands with one another and say, “Good game.”  We talk about how sometimes we win and sometimes we lose, and this is okay.  I’ve seen a dramatic improvement in Ben’s ability to cope with loss during a game, and I hope this transfers to other areas of his life.

5)   Games lead to language and communication

There is a saying that “learning flows on the sea of talk”.  As we play games, conversations just seem to happen naturally.  There is the language and conversation that springs from the game (“Can you hand me the dice, please?”) but as we play, we also talk about school, work, and life.  Game time and talk time seem to go hand in hand.

6)   Games teach empathy

Ultimately, there may be a winner and a loser in a game, but that doesn’t mean that we can’t feel for the other person when challenges arise.  We feel bad for Dad when he gets the “Go to Jail” chance card.  We laugh but also say sorry to Mom when we send her back to Start in Trouble.  The struggles and pitfalls that arise in a game give kids an opportunity to not only practice handling these challenges but also to respond in caring ways when they happen to others.  All great preparation for the real world.

7)   Games promote risk taking

Games allow us to take risks in a safe environment.  We can spend our money to buy tons of properties in Monopoly and see if we can make our fortune, and if we lose it all, at least it's only Monopoly money.  We can sit in that precarious middle area in the game Trouble, the place where we may get knocked back to Start or potentially save tons of time get Home much more quickly.  Games provide opportunities to become characters and try out scenarios that we don't encounter every day.  It also gives kids practice with adult skills like managing money and making grown up decisions.

8)   Games teach us to follow a set of rules  

I come from an extremely competitive game playing family.  As a child, Monopoly games could last well into the night.  There were many occasions when someone would have to pull out the rulebook because of a dispute.  And then there were the house rules.  In Monopoly my family agrees to put the jail bail money and other “mad money” in the Free Parking space while playing Monopoly.  Learning to follow a set of rules is an important skill.  Ben not only follows the rules but he enthusiastically enforces him.  He's only beginning to try to "bend" the rules, which is quite humorous to watch.

9)   Games help to build fine motor skills

Whether it’s rolling the dice, moving the player around the board, or putting a card on the bottom of a pile, board games help hone fine motor skills, and in some cases, gross motor skills too.  (Ever tried to pop that bubble on the Trouble game?)

10) Games are just plain fun

Life can be filled with serious moments, but game time is fun time in our house.  Ben laughs with delight when he lands on a good space, squeals with glee as I give him money for landing on his property in Monopoly, and hoots when Daddy goes to jail.  Ben has even invented his own special rules, like singing the Happy Birthday song whenever anyone gets the birthday chance card.  No wonder he wants to play games over and over again!

Top 10 Posts of 2014

For my very first post of 2015, I thought I would start by looking back and remembering the posts of 2014.

It has been a busy and exciting first year for my blog, with close to 7,000 views this year from people all over the world!

These top 10 posts are based on those most often read by YOU.

So here they are, counting down from 10 to 1...

10.  A Kindergarten Dream Come True
Ben entered kindergarten for the first time this year, and, after worrying about finding right classroom environment for him, I hit the teacher lottery and found him an inclusion classroom where he is thriving!

9.  10 Ways I Parent Differently Because My Child Has Autism

So, what is it like to raise a child on the autism spectrum?  This parenting experience is as varied as the spectrum itself, but what follows is my top 10 list.

8.  An Open Letter to Ben's Soccer Coach
This year Ben tried soccer for the first time.  We told his coach that he would most likely act very differently from the other players on his team, but she never wavered from including him in every way that she could.  This post is a letter of thanks to her.

7.  Musings of a Soccer Mom

Another soccer post!  I wrote this during Ben's second soccer season, as I watched him out on the field and wondered about his future.

6.  Acceptance Comes in Five Stages

This post was a life-changer for me.  It describes the five stage grieving process I passed through during the past year as I came to terms with Ben's autism and entered a place of acceptance. It's important to understand that I did not grieve for my son.  Instead, I had to let go of the fantasy son I had held inside since he was born so that I could truly embrace the uniquely wonderful child that he is.  And when I was able to accept this new reality, my life truly changed for the better!

5.  How Does Your Garden Grow?

Ben has never been much of a fan of vegetables, but this summer, he discovered a love of gardening, and, amazingly, his eating habits started to change.

4.  My Favorite Time of the Day

This post is all about my favorite time of the day....snuggle time!  

3.  A Letter to a Special Needs Kindergarten Mom

I promised myself that on my son's first day of kindergarten, I was not going to be that mom who cried and worried about her child all day.  So, rather than focusing on my son that first day, I went off to work and kept watch over other people's children.  This is my letter to the mother of a little boy very much like mine.  

2.  The Diagnosis: One Year Later

This post has always been one of my most popular ones.  It was the first post I wrote, and it describes my thoughts and feelings a year after my son received his autism diagnosis.  It was the reason I started writing this blog.

And, last but not least, my most popular post of 2014 is...

1.  There's Something Rotten in the State of Florida

This post brings the expression "you can either laugh or cry" to mind.  Apparently many of you can relate to my...rotten..experience!

So that's the Top 10 list.  Thanks to all of my faithful readers who have encouraged me on this blogging journey.  Which posts were your favorites this year?  Did they make the final list?  Please comment and let us know!

Reflections on New Year’s Eve 2014

Ben and his Dad at Downtown Disney.  Ben likes to tell his Dad, "One day, I will be bigger than you!" 

There’s only a few hours left of 2014.

Overall, it’s been a good year for this family.

It has been a year of learning and year of growth. 

When Ben was first diagnosed with autism over a year ago, I read every book I could find on the subject.

But my greatest learning by far has come from the blogs and posts that I read from fellow autism parents and adults who are on the spectrum.   I have felt love and support from family, friends, and community, both in the real world and the virtual world. 

A year ago, I was frightened by the unknown, but I realize that I am no longer afraid.  I have all of you, and I realize that I am not alone in this.  We all face challenges of one sort or another, and even though each person’s story is different, we are here for each other, and that is a very comforting thing. 

This blog has been a wonderful way to connect with others.  I have heard from many of you that this blog has helped you to have a deeper understanding of Ben, and, by extension, of autism.  I am always grateful about how my blog has touched someone personally, often in ways I never could have anticipated.  For me, this blog has been a voice for my feelings and a time capsule for memories that would have otherwise disappeared. 

Time passes much to quickly. 

Every morning when Ben wakes up, he asks me if he looks bigger. 

He’s in a huge hurry to grow up. 

He talks about what he’ll do when he’s a grown up (which includes things like riding rollercoasters, buying a house down the street from my parents, owning a cat, a dog, and a bird, and having a little girl). 

Yes, Ben, you are getting bigger.  You have grown up in so many ways this year.

You started kindergarten at your very own school (away from me).

You played on a soccer team (for two seasons!)

You learned to play board games (and lose without crying).

You started taking showers and washing your hair on your own.

You started calling me Mom (not Mommy).

You learned to read, write, and color (mostly) in the lines.

You were able to stand in line for 45 minutes waiting to build that bear.

…and more….so much more!

Ben, I know you are in a hurry to get bigger, but don’t grow up too fast.

2014 flew by much too quickly.

I didn’t have nearly enough time to spend with each of you, but to all of my friends and family (both near and far), I would like to say this.

Thank you for your continued support this year. 

Thanks for always being ready to lend an ear, a kind word, or a chat over a cup of Starbucks. 

Thanks to the parents who invited Ben to birthday parties this year and over to swim.  Thanks for letting us tag along to backyard movie nights and to days at the beach.  Ben’s friendships with your children mean more to me then you can know. 

Thanks for writing to me, pulling me aside at family dinners, and sending me little texts telling me that I’m on the right path and doing a good job.  Because… even though I know it’s never enough, and that we’re all doing the best we can… it’s nice to hear that someone sees and someone cares. 

Thanks for being part of our journey, and we look forward to seeing you next year!

I can’t wait to see what 2015 will bring!

Small Acts of Kindness

                                               

In this picture, Ben is busily writing a letter to Santa.  In the letter he tells Santa that he's been a good, good boy this year.  

“Maybe Christmas,” the Grinch thought, “doesn’t come from a store.  Maybe Christmas, perhaps, means a little bit more…”  This is one of my favorite lines from one of my favorite movies, “How The Grinch Stole Christmas” by Dr. Seuss. 

Commercialism can easily overtake the Christmas spirit if we are not careful. 

This year, I vowed, will be different.

My son Ben is an only child, and the only grandchild on my side of the family, so he gets more than his share of presents. 

I want him to understand that Christmas is about more than just getting presents. 

I want him to care about helping others. 

Some might say that, because Ben is autistic, this is an unreasonable goal.  Those naysayers believe that autistic individuals lack something called theory of mind, or the ability to take on the perspective of others.  In other words, they believe that those on the spectrum lack empathy.   Click here to read more of my thoughts on this topic.

This year I’ve made a thoughtful effort to insert acts of kindness into our holiday merry-making.  Rather than focusing so much on what Ben wants for Christmas, our conversations have been much more centered around thinking about the needs and wants of others.

I didn’t intentionally set out to create a five-step plan, but these events seemed to have evolved nicely into five steps, and so here they are:

1)  Help him to think about his closest friends and the things that they like.

This year Ben has made a few close buddies at school who he talks about a lot.   He hangs out with them before school and plays with them every day on the playground.  In order to help him with the concept of giving gifts to others, we first spent time thinking about the toys his friends enjoy playing with, the things they enjoy doing, and what they talk about most at school.  From there, we matched these interests to gift ideas.  For Nikki, his best friend, it was easy.  Ben knows that Nikki loves cars, so anything with Hot Wheels or Lightning McQueen is a safe bet for him.  We talked about how Emily loves Frozen and he has lots of fun building Legos with Mason.

2)  Make homemade presents for close friends and family members.

Every year Ben makes homemade ornaments and gifts for his family, but this year we really spent time talking about what each relative would like and taking care when making the item, whether it is a homemade card for his teacher with a carefully written letter, or choosing pretty colors that he knows his Mimi and Papaw will enjoy.  I’m not going to give too many details about the presents since they haven’t been opened yet, but you get the idea!

3)  Shop with a purpose

This year at school, Ben got shop for presents at Santa’s Secret Shop.  We sent Ben with a certain amount of money to spend on each friend and he picked out a small gift for his four closest pals.  Then, we made goody bags for the entire class that he filled with little toys and trinkets.  We went to the Dollar Tree and talked about which items his friends would like most.  We chose a few toys to include in each bag, and Ben got to fill the bags for each child.  Then, he made a small card with his name on it and put it inside each bag.  He’s very excited to give his presents to his friends on the last day of school before the break.

4)  Talk about why helping others is important

After shopping for friends, the next step was talking about helping people he didn’t know.  This is a very abstract concept, but I decided to try anyway.  We discussed how some families don’t have as much money as we do.  Ben really understands money these days.  He gets a dollar every day that he feeds the dogs and cleans up his toys.  He uses his dollars to play the game machines at the local pizza place, or he saves them up to go to Toys R Us.  When we explained that some families wouldn’t have money to buy toys for Christmas, he truly felt for them.  And then when we explained that he could help Santa by buying toys for kids who wouldn’t have toys, he was all in.

5) Talk about how donating feels good to do

Ben was finally ready to donate.  My husband took Ben to the local toy store.  He explained to Ben that he could pick out one toy for himself with his money, but he needed to choose one toy to donate to a child in need.  Ben accepted this and went to the store, carefully looking up and down the aisles for the perfect gift to give.  Finally, he settled on a Frozen doll to donate, something he knew a girl like Emily would like.

When he got to the cash register, he eagerly presented the money to the cashier and promptly walked over to the donation box. As he placed the toy in the box, the line of customers erupted in applause and Ben grinned from ear to ear.  One lady even gave him a dollar to put towards his next donation.  This got his attention.  Donations weren’t so bad after all.

The next weekend he wanted to donate again.  We explained to him that donating didn’t always mean applause or little old ladies handing out money, but he had to see that for himself.  We went to Toys R Us, and this time he chose a Hot Wheels set to place in the box.  This time, as we predicted, there was no applause and no free money handouts.  Amazingly, however, Ben took this all in stride.  He looked at the toys in the box, his hands empty, and walked out the door to the next stop on our shopping journey.

Since the second Toys R Us trip, Ben has donated twice more, once at school to the Toys for Tots box and once putting some change into the Salvation Army bucket. 

I like to think that he’s learning that giving feels good. 

I know he likes it that Santa’s watching and it’s earning him points on the nice list. 

And I’m pleased as heck that all this coming from a kid who’s not supposed to have the capacity for empathy.

I hope you and your loved ones have a wonderfully giving holiday season!