Why Autism Speaks Doesn't Speak for My Family

It has been about six months since Caroline was diagnosed with Autism.  My heart ached for what the diagnosis meant for Caroline, for our family, and for me.  I immediately went into the information seeker phase; since Caroline's diagnosis I have read Far From the the Tree, Carly's Voice, The Way I See It: A Personal Look at Autism and Aspergers, The Reason I Jump, Look Me in the Eye, The Spark, not to mention countless blogs on the subject of Autism.  And I have followed all of the major advocacy organizations on social media.

Recently, I became aware of a controversy regarding the largest and most influential of advocacy organizations for persons with Autism, Autism Speaks.  The deeper I dug, the more my heart sank. My family has only been on the journey with Autism for a short period of time, but we believe it is impossible to separate the essence of Caroline from autism. In other words, Caroline would not be the same person without autism and even if a cure were to be found, I am not sure how we would respond.  Don't get me wrong, Caroline's life is full of challenges and my heart aches for each of these challenges. However, some of the most defining characteristics of Caroline are those that are a result of autism: her obsessive love of frogs, her sensory seeking behavior, her wonderful laugh--frequently at inappropriate times- are all from autism. Our family's approach to autism is what Andrew Solomon, author of Far From the Tree, would consider the identity model, "Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources." As logic would follow we invest mightily in resources that will allow Caroline to live the most autonomous life possible (ABA therapy, OT, Speech, music therapy, and opportunities to engage with typical peers).

The more I learned about the mission and agenda of Autism Speaks the more I realized their agenda is based on the illness model. This is demonstrated by the fact that in 2010, Autism Speaks spent just 4% of their budget on providing services to persons with autism. Also, recent comments by their leadership have forced me to realize that Autism Speaks Does Not Speak for my Family.  Suzanne Wright, who co-founded Autism Speaks in 2005, posted a statement (the day before the launch of the Autism Speaks to Washington Summit). Her words were difficult to read.  She describes the 3 million children living in the United States with autism as "lost" and "missing". She then goes on to talk about the struggles endured by the parents of children with autism:

These families are not living.

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.

Later, she questions:

And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?

Three times in her commentary, she explains horrible situations that are followed in bold typeface by:

This is autism.

It saddens me that Ms. Wright failed to identify the amazing gifts those with autism share with the world. And further that she fails to realize that autism is part of my daughter's identity-not her whole identity but part of it. Finding a cure for autism is not the same as finding a cure for cancer it is much more complicated. As Jim Sinclair has explained autism is not an appendage:

"This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

"I wish my child did not have autism,"

what they're really saying is,

"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces" (Sinclair).

[caption id="attachment_1166" align="alignleft" width="300"] We want acceptance, not a cure.[/caption]

With autism comes challenges but Caroline comes with autism. During the tough times, I remind myself autism is tough, loving Caroline is easy. My job as Caroline's parent is to give her the tools to be as autonomous as she can be in this world; to allow her to unlock her potential, and to let her decide how how she will use that potential  It is surprisingly similar to my job as Vivian's parent - the only difference is that I need the help of trained OT, PT, Speech, Feeding, and ABA therapists to unlock Caroline's potential which requires tremendous resources.  Ms. Wright's words left me looking for an organization that was more closely aligned with our family's advocacy needs. But when I learned that the Judge Rotenberg Educational Center-- an organization with a documented history of abusing persons with disabilities--tabled at the Autism Speaks to Washington Summit, I almost lost my lunch.  Lydia Brown, an Autistic advocate, provides a complete and chilling history of the Judge Rotenberg Educational Center.  I just cannot conceive of supporting an autism advocacy organization that would endorse this group - a group that uses a form of electric shock aversion therapy -  as a trusted resource.

I want to be clear, I know that I have blogged about how trying it can be to be the parent of a child with autism but I hope that I have also shared the joys it brings. Part of the reason that parents of kids with autism have to work so hard and have such long days is because there is not adequate support or services for our children or families. Another major challenge is finding true resources that will help with autism, but when Autism Speaks considers an organization that has sued for the right to use electric shock aversion therapy on persons with autism as a resource, they demonstrate their true goal of eradicating autism, not supporting persons with autism.  For these reasons and many more, Autism Speaks does not speak for me. 

I Can See Clearly Now

The morning after accompanying Caroline to her sleep study, on a day when our only vehicle is in the shop, and when my to-do list is a mile long is the best day for "it" to happen.  "It" made me realize that the hustle of bustle of simply trying to keep up with my life often causes me not to stop and celebrate the truly wonderful moments in my life. I get caught in the minutia of the mundane, find myself focusing on what I believe has to get done (the SSI application, the medical history form for this appointment or that, applying for this grant, cleaning my bathroom so it doesn't get condemned by the health department) rather than getting done what I can and taking time to enjoy the splendor that surrounds me.

Flashback, at this time last week I was writing a blog about a bout with depression that has been particularly challenging.  I wanted to sit on the post of a while before sharing; sometimes I wonder if I share too much of myself online, the answer is, yes I do.  But I hope that other people benefit for my experiences and my honesty and at the end of the day if someone thinks less of me for sharing a real part of me, I guess that is more telling of them than me.  So here is the post I started writing last week...

There are days that I would rather not engage with the physical world but rather just watch the digital world float past me. On these days, I am most comfortable nestled in my bed, alone, behind a closed door.  I don't mind the sounds of my family enjoying life, they are somewhat comforting-but I have no desire to join in their fun. Despite the guilt, I cannot force myself to clean the house, fill out the mountain of paperwork, or do any of the other million things that are on my list. During the week,  I drag myself down to my office log on to my computer and force myself to respond to emails, write documents, and continue to stumble through my professional day.

I felt the perfect storm brewing so I went to my doctor and began anti-depressants and anti-anxiety medications at the beginning of the summer.  I started the meds just in time, my mood and energy level plummeted just as my stress level soared.  Perhaps the chemical imbalance is responsible for some level of clairvoyance.

I have an established history with depression and anxiety.  At times, when I don't have the energy to move, I wonder if the depression is caused by the many challenges in my life or if the challenges in my life seem greater because of the depression.  When the depression sets in, despite my best efforts, the only thing I can see is the injustice that surrounds me.

I laugh at my life whenever possible, I try to embrace the joy and wonder that surrounds me.  But there are days, days like today, when I can no longer muster the strength to try and convince myself that I am just tired or that I will get a break soon.  I am physically and emotionally exhausted.  Many activities I used to find enjoyable are now a chore.

[caption id="attachment_1157" align="alignright" width="300"] The ladies and I spent most of Saturday at Morgan's Wonderland. It was a great day--a day that allowed me to see the good the surrounds me. Including what an amazing big sister Vivian is.[/caption]Fast Forward.  I told John how I was feeling and as always he rose to the occasion. On Saturday, he suggested that I take the ladies on an adventure and that he would stay home and clean. And then on Saturday night, he told me to go see a movie by myself.  He allowed me enough space to wallow and escape while creating an opportunity to enjoy the wonderful things in my life.

On Sunday night, I was really tired. But Saturday was a good day and I decided that I was going "to fake it until I make it." So I mustered the energy to take Caroline to her sleep study.  It was an experience...Caroline was all over the place, kicking her legs like a mad woman (in her sleep) and took up most of the bed.  But she woke up so happy, so very happy. I hardly realized how little sleep I got because her joy was energizing.

When we got home, I put Caroline in her room to "rest" for awhile...it was only 7 am.  I crawled into my bed planning to sleep for about three hours or so.  When I woke up, I went out to the loft. Kristen was carrying Caroline to her room...so Caroline's back was to me.  I snuck up on her...and tapped her back.  Caroline looked directly at me and said "Momma."  I looked at Kristen--I was so overwhelmed....I loudly told Caroline how happy she made me...Apparently I was too loud because Caroline ran away from me.  But Caroline said "Momma."

The joy that comes with her sweet voice uttering "Momma" with perfect clarity is like no joy I have ever felt.  And perhaps the joy is amplified because it came just as I was emerging from a dark patch.  I write to remind myself how far we have come....this is not just Caroline's journey...it is our family's journey, we share her challenges and her accomplishments.  And despite how much I try to remind myself how much I have grown as a parent, spouse, professional and a person since welcoming Caroline in this world there are still tough days--tough days made harder by depression. But today, I celebrate Caroline's new word, "Momma" and I thank Caroline for giving me the last push I needed to step out of the darkness and back into my life.

Remember How Far You Come

There are days that I would rather not engage with the physical world but rather just watch the digital world float past me. On these days, I am most comfortable nestled in my bed, alone, behind a closed door.  I don't mind the sounds of my family enjoying life, they are somewhat comforting-but I have no desire to join in their fun. Despite the guilt, I cannot force myself to clean the house, fill out the mountain of paperwork, or do any of the other million things that are on my list. During the week,  I drag myself down to my office log on to my computer and force myself to respond to emails, write documents, and continue to stumble through my professional day.

I felt the perfect storm brewing so I went to my doctor and began anti-depressants and anti-anxiety medications at the beginning of the summer.  I started the meds just in time, my mood and energy level plummeted just as my stress level soared.  Perhaps the chemical imbalance is responsible for some level of clairvoyance.

I have a well established history with depression and anxiety.  At times, when I don't have the energy to move, I wonder if the depression is caused by the many challenges in my life or if the challenges in my life seem greater because of the depression.  When the depression sets in despite my best efforts the only thing I can see in the injustice that surrounds me. 

I laugh at my life whenever possible, I try to embrace the joy and wonder that surrounds me.  But there are days, days like today, when I can no longer muster the strength to try and convince myself that I am just tired or that I will get a break soon.  I am physically and emotionally exhausted.  Many activities I used to find enjoyable are now a chore.