the white house part five – a spectrum of words

The White House saga continues … 

Part One

Part Two

Part Three

Part Four

**

We left off with me turning the floor over to Katie, the autistic young woman who had come to the White House to advocate for herself and her community. It was obvious that sitting in the room was beginning to take a toll on her, but she was keeping it together remarkably well. I looked again at the button she wore on her lapel. No Pity.

Katie spoke about words. She spoke about the demonization of autism in the public discourse and the irreparable damage that it can do to the psyche of those affected by it. She spoke of the environment that it creates for those who have autism – one of fear, of mistrust, of pity. She spoke of a public that views autism as a tragedy and her desperate need to change that perception.

She spoke of respect, of dignity, of recognition of humanity no matter one’s level of impact. She spoke of her difficulty with words like ‘disease’ and ‘disorder’ and ‘cure’ in reference to this thing that she believes is an integral – if not wonderful – part of who she is.

And I understood. Her words resonated on every level. I thought of my girl, of course. I thought of the day at the Autism Walk in October when the very well-intentioned man speaking into the microphone referred to autism as a ‘crippling disease.’ I thought of how desperately I’d hoped that Brooke hadn’t heard him, knowing of course that she, on some level, hears everything.

Our children are vulnerable. The words we use when we talk to them and about them matter. Depression runs rampant among teens and adults with Asperger’s and other so-called ‘high-functioning’ types of autism. These kids already grow up feeling like square pegs in round holes, like they live on the outside looking in on a world that they don’t understand and that clearly doesn’t understand them.

To then tell them that this thus far inextricable aspect of their being – what so many see as a basic difference in their wiring – is fundamentally evil, in need of eradication, makes them damaged or broken or somehow less than anything or anyone else, well, it’s no wonder so many of them struggle with low self-esteem, depression and worse.

My friend, John Robison wrote about this last year in a post called, I am Autism Too – Thoughts on Neurodiversity and the Cure. I thought of his words as Katie spoke.

For many of us on the spectrum, a parent’s stated quest to ‘cure’ autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad and half Mom. So when Mom tells me Dad is no good, what is she saying about me? 

If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.

He goes on to say,

There is nothing wrong with wanting to take away a disability. That’s a great goal and one that I fully support. What’s wrong is making something out to be ‘bad’ and then failing to take it away; leaving us with the ‘bad’ irrevocably bonded to us.

Moral judgement has no place in the world of remediating disability.

As Katie spoke, my heart ached for the adolescent that my child will soon become. For the teenager who will struggle with her differences. For the woman into which she will someday blossom. How will she put all of this together? How will she process these words? How will hearing that this fundamental part of her being is ‘a crippling disease’ affect who she will become and how she will feel – not just about her autism, but about herself as a human being?

But then what about Idil’s son? What about the eight year-old Somali-American boy, who like so many of his peers has no words? How does Katie’s No Pity campaign affect HIM?

What about all of the kids who have no voice? The ones who have no viable means to communicate their most basic needs to the world around them? Who live in a state of constant frustration? What about those with no sense of danger? Those whose constant melt-downs become unmanageable and unsafe? What about those whose self-injurious behaviors become so severe as to cause permanent damage to their homes, their bodies, their brains? What about those who don’t sleep? Whose diet is limited to the three things they can tolerate? What about those who paint the walls with their own feces well into their teens? What about those who run? Who drown in nearby ponds because no one could find the child who couldn’t respond to his name? What about those who are abused by people who know they can never report their crimes?

How does the public discourse affect THEM when it turns to talk about the gifts of autism? About the happy rainbow of neurological differences? How does it affect their parents’ desperate quest for help and resources and answers when the public is being told that autism is something to be celebrated? When they live a life in which the disability looms so large as to obliterate the hope of finding something – anything – to celebrate in their autism? What does No Pity mean then?

Above all others, this has been the topic that has haunted me since my time at the White House. I’ve been turning it over again and again, worrying it between my fingers, slowly pulling its threads to see how they are woven together, to see where they come apart.

Autism is one word, but there is no one autism.

The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.

I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.

Words matter.

For Katie.

For my daughter.

For Idil’s son.

For all of us.

To be continued .. 

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46 thoughts on “the white house part five – a spectrum of words

  1. Jess,

    Another great post on a deep and important topic.

    I don’t think the “happy rainbow of neurodiversity” is exclusive, but rather super inclusive. This is the debate that divides “special ed” from “gifted ed” and shouldn’t. Because when we stop evaluating everyone by the same measure, that really means we stop measuring everyone by the same standard. That every person deserves both respect and assistance. The agony and difficulty of some circumstances doesn’t reduce the challenge of others, just as what the world might deem the “higher functioning” of some doesn’t reduce the value and abilities of others. *Every person deserves both respect and assistance.* It’s good for them, and it’s good for all of us.

    Some people might think this is Pollyanna, but I don’t.

    Karin

  2. I think this post, the thoughts you express, speak so much to the heart of what divides the greater autism community-at-large. How do we reconcile the enormity and diversity of the range of autism’s effects? At this point, I cannot foresee a day when my son might be able to speak for himself as Katie was able to do. And yet, two years ago, I once could not envision a day when he could use a speech generating device to begin to tell me about his day, his needs and desires.

    I think the mantra of “No Pity” needs to be embraced by all families dealing with autism if only from the standpoint of being able to see beyond what may, in the moment at hand, feel like a forever and impossible situation. Without the ability to let go of the pity (and the victim mentality which some people, neurotypical or not, embrace), to envision POSSIBILITIES, it becomes next to impossible to fight for services, supports, education, assistive technology — for anything and everything which might help open up a new world for our loved ones with autism. I also think so much hinges on whether one holds a fundamental belief that people with autism are “present” regardless of their level of communication or participation.

    (Sorry for the rambling diatribe. This is a topic near and dear to the heart of this mama.)

  3. Also, I think it depends on how one interprets the word PITY. Tender sympathies versus contemptuous sorrow or regret. I have sympathy for my son and all he struggles with. I don’t have regrets or contempt.

    • i agree. when i originally wrote this, i didn’t really attribute a negative connotation to pity – i was lumping it in with empathy and compassion. your point is well taken.

  4. this is all so complicated, it makes my head hurt. i can see everyone’s point and i have no answers. :/

  5. Yes, I can see why this haunts you. It’s haunted me for years, too, and it’s beginning to cast a shadow on my 11-year old as he struggles mightily to figure out what his ASD/Asperger’s label means as far as his own identity.

    Words do matter. Goodness knows we tiptoe through a minefield of them all the time. And the words you used to articulate this heartbreaking, vexing divide are breathtakingly eloquent.

  6. Jess, this is so much the heart of the issue of getting everyone on board to actually make change. When the louder voices of people advocating are doing so with ‘agendas and catch-phrases’ we lose sight of the goals which are actually quite simple – to give people like Katie the right to feel equal and to contribute without feeling ‘less or labeled’ and the right for our children to be given the supports they need to be successful no matter what end of the spectrum they fall on or what ‘success’ will mean for them out in the world.

    Respect. Healthcare. Education. Housing. Employment. LOVE.

    Thank you, Jess, for your voice in support of ALL with autism.
    xo

  7. Words do matter, so much so that I am paralyzed by the weight of how much they matter at times. This topic haunts me deeply as I search for when and where and how to talk to my son about autism. Does he know anything is different? I don’t want him to feel bad about who he is, I fear the depression and angst that the words others use to describe his differences will cause.

  8. Pingback: Hocus Pocus « Welcome to StimCity…

  9. My son might be high-functioning, but he’s still miserable much of the time. He’s only 5, but if things are still as difficult for him as they are now when he’s older, he will not likely want pity, but he might wish his brain was more cooperative. I struggle with what to tell other children who are on the receiving end of his aggression and other idiosyncrasies. I have settled on saying “his brain works differently than yours, and he gets frustrated and angry easily.”
    So although he knows his ABCs and 123s and has many strengths, I still cringe at the metaphor of the shiny, happy rainbow of neurodiversity.
    Anyway, thanks, Jess, for putting all of this into yet more words. There is no single answer for anything with autism, which is what makes it so maddening for those of us trying to help our loved ones.

  10. At last week’s CTIA LADDERS conference, the presenters nearly universally were referring to ‘autisms’ to describe the spectrum of this community. One Powerpoint slide even illustrated this idea with a scrambled Rubic’s Cube. We may all be points on the same cube, but maintain very different (but connected and equal) vantage points.

    • so glad to hear it. there are SO many different types of autism, so many different ways to arrive at the diagnosis – so many different epidemiologies and then still – even more manifestations of the disorder itself. it’s mind boggling.

  11. I have a picture book coming out for young kids on the spectrum, and my publisher has given me the ok to approach you about contributing some sort of intro or back cover blurb; I would love to somehow include a shortened version of this post for that purpose. Please email me to discuss.

  12. So complex. So many ways to be pulled. You articulate it well.

    Karin’s comment on the rainbow imagery resonates very for me. The rainbow is such a natural image to use in conjunction with autism, given our language of autism “spectrum,” and I think it’s got some powerful things to say about human worth, no matter where on the spectrum one falls. (I spoke about this in a post on my own blog a couple years back, when my church was doing a series on “the spectrum of faith and doubt.”)

    Unfortunately, the rainbow image does also have that association with fantasy and unicorns and shiny happy la-la-land. Which is not at all what I have in mind when I talk about rainbows and the autism spectrum — having a kiddo of my own who is approaching age 7 un-potty-trained and not speaking more than a few recognizable words — but I do get into misunderstandings over it at times, alas.

    • My son’s doctor called the spectrum ‘an umbrella’ instead of a rainbow.

      Potty issues? Let me say that I feel your pain and frustration. Two years ago, I felt that my now almost 9 year old daughter would never be potty trained. Now, things are at least better. We and the school have her on a schedule because she still won’t initiate, but it works. And she mostly does her bm’s in the toilet. It wasn’t until last summer that she “got” “earning” a toy for going in the toilet. That was when she started making progress. Good Luck! You are not alone.

      • i use the umbrella metaphor all the time to try to explain this screwy spectrum of ours :). glad things have gotten better – always, always hope.

      • I love to hear that kind of story, Denise! Thank you!

        We’ve had a toilet-sitting routine in place for almost a year, and she sits without complaint (and sometimes passes gas deliberately, a hopeful sign!) but almost NEVER produces. One of these days, I’m betting it’s all gonna click, or at least, begin to click… but it’s hard sometimes to live life on her calendar instead of ours.

        Again, thanks for the hope and the good-luck wishes! And good luck wishes to you for initiation — one step at a time…

  13. I just spent 4 days at a meeting for a nonprofit that creates homes where adults with intellectual and developmental disabilities and their companion “assistants” share life together like a family. Included among the meeting attendees were several of our “family members” who have an intellectual disability. Having these voices and perspectives at the table was one of the most enriching experiences of my life. One man was so determined and passionate about his discomfort with the language we use to describe roles within the organization that we paused the meeting agenda and held an enlightening conversation about the words we use and how they are understood or felt by each member of our community. I am pleased to hear that the White House included some of these voices in their conversation about autism. And I am grateful to Katie for representing individuals on the spectrum. As a mother who can get caught up in the therapies that my son “needs,” this last week has been a powerful reminder that one of my most important roles is that of listener. There was a time when he didn’t have the words to tell me that a situation was both exciting and overwhelming for him, but his behavior communicated it. How many times did we attempt “important family events” like graduations only to spend the time outside the main event, creating a calm cocoon of comfort amidst chaos? And yet how excited he was to be close to the main event and included in something that was important to the family. As a society, I hope we can find new ways to respect and include these different voices in our daily lives and activities.

  14. “Autism is one word, but there is no one autism.

    The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.”

    Thank you, Jess. You have my love, gratitude and support.

    Jersy

  15. Hi Jess,
    Another great post! Really interesting points you made in it.
    Wanted to let you know that I ran into a neighbor who has a daughter on the spectrum and they took her to Ecuador for some sort of therapy. I told her all about you, your family, and your awesome blog. Told her to follow you on your blog and on Twitter. Her name is Heather and she is from Florida like me.
    Think that she would glean so much from you but thought that you would enjoy hearing about her experiences…her daughter went from being nonverbal to speaking over 200 words with this bone marrow therapy they are doing. Well, looking forward to hearing about Harvard.

    Enjoy your day and hope that all goes well with the Ivy League folks:)

    Colleen (am now following you on Twitter too, although I had to go with F5th instead of my blog name, Sunrise Learning Lab, b/c that was too long).

    • sounds interesting; i’ve never heard anything like that. do you have a link please? i’d be interested in reading about their experience. and as always, thx for bringing new friends!

  16. Wow. Thank you so much for advocating for all of us. Thank you for speaking up for those of us who can’t just “buy into it” too. My husband is a teacher. I used to be, but now stay home with Ryan, 5 and autistic, Richie, 2 and Maelynn, 15 months. We live in a small country town in central Texas, and it is so hard to do enough for Ryan. He is verbal, but not very communicative. We had SSI to help pay for therapy, but my husband did a drum camp last summer and that bumped us $300 over the limit, so now we’re back to cloth diapers and doing our best to pay for gas to drive to Waco and back to get Ryan to therapy. God provides, we don’t go without… but it does get challenging, mostly to find the right help for Ryan and know what we’re doing is best… but I feel like it’s never enough. Thank you so much for bridging the gaps between all of us, and giving us a place to share.

    • oh, crystal. your story kills me. $300 that eliminates SSI. it’s such a frustrating system. but yes, God does and will provide. hugs.

  17. I was so swept up in this post, Jess. No pity – yes, I see what Katie is saying. She can speak for herself. You spoke/speak for those who can’t. A huge hug being sent your way. Did you feel it? gail

  18. I realized long ago that I don’t want to “cure” my kids; I want life to be easier for them though. To “cure” my kids would be to narrow their thinking and perceptions of things. They don’t think outside the box, they think in another dimension. This type of thinking can solve problems and create art. Our school district PTA noticed that many of the “gifted” students also had special problems – social skills, anxiety, OCD, dyslexia. Their “gift” is in thinking differently.

    For my children, I want them to have the skills/ability to communicate and be comfortable living in this world.

    I think that we say we want a “cure” because a cure stops pain and suffering and allows you to get on with your life. THAT is want we want for our children and our families.

    • i couldn’t agree more. the way that john puts it really resonates with me. for him, it’s all about ‘remediating the disabling aspects of autism’.

      i believe that if we really could eliminate or at the very least mitigate the challenges of autism, we would see its gifts everywhere.

  19. Hi Jess. Do you ever review news stories that are sent to you? I am trying to draw statewide (NY) and national attention to the misuse of time-out rooms in our schools. This news story is from my own county. They can do this in schools, but if parents were to do the same at home they would be arrested. The condition of this room is shocking. Thank you for your consideration. I hope someday this will garner national attention. You seem to have a gift for that.
    http://www.cnycentral.com/news/story.aspx?id=613160#gotocomment

    • sarai, i don’t, but i’m glad you posted it here so that my readers will see it. good for you for speaking out even after getting your daughter out of there. so many wouldn’t have looked back.

  20. We go through this here, too, demonizing autism. My oldest reminds me daily that he hates being the only normal one in our house. I gently remind him that he took after his dad and if his dad were alive today we’d be even numbered, it gives him a little comfort. I have to push him not to refer to autism as bad, constantly explaining the affects that kind of statement can have on his little brother. I do the same to those around me and then I get on my soapbox, telling them that I am autistic too and if my son hadn’t been diagnosed I would have spent the rest of my life feeling guilty for a troubled childhood. I explain my symptoms and then his. I let them know that autism is like the trunk of a 100yr old tree and the many branches that sprout out from it are the variant forms, some of which we have yet to see. I won’t say it always helps, but having 2 live people in front of them and comparing the differences does get them thinking and for now that will just have to do.

    The problem with autism is that it comes in many forms and there is no catalog of symptoms under a seperate name to define what treatment can be used. I’m not going to complain about that though, because when I was young written off for my anti-social behavior, there was only one autism and it had been demonized so badly that like Lord Voldemort in Harry Potter, no parent would speak its name. This is the wall that we have to tear down; the wall that was put up 38+ years ago that defined autism as a death sentence. I tell those around me that there isn’t enough tape or glue in the world to fix Mason because he’s not broken, he’s just wired differently. Spending my life as an outcast, never fitting in, then finding out in my early 30s that I was autistic hasn’t changed me…much…I still stick out, but now I know why and I wear my autism like a badge. It is a part of me that cannot be changed and I honestly believe that it prepared me to be a widow with two little boys in adulthood, therefore I refuse to complain about it. We could have a multitude of crutches/pity parties here due to what we’ve been through, but I do not allow it. I want my son to grow up and be proud that he is different, not embarrassed. We need to educate the people around us; schools, states, government, things have to change and they have to change now. Autism numbers are growing, more and more children are being diagnosed each day, I think this qualifies as an epidemic, don’t you? Keep talking, Jess, and I promise someone will hear you. Proof is right here, thanks to you I have become a major advocate for my child, speaking to anyone that will listen. You lead the fight, girl, and I will follow you into battle anytime! Thanks.

  21. Wow! Somehow, I missed this post yesterday. What an enormous challenge there is for folks to be united and not divided with respect to what really is best for the community at large as well as well intended folks from outside the community. I have gotten such an education reading your blog posts from day to day, month to month. Looking forward to hearing about Harvard soon too!
    Hope that it went well for you,
    Colleen

  22. I would just love it if we could all gather in a room around coffee and discuss this back and forth. There is so much I want to say and hear/learn from others about this topic. My boys are both on the spectrum. My oldest on one end and my youngest at the complete opposite. Seeing the 2 polar ends day in and day out has taught me so much about what their disabilities and abilities really are.

  23. As a mom of a nonverbal little guy, I struggle with responding to posts written by verbal people with autism who resents efforts to find a cure. At the same time, I hear their pride in who they are and wish the same for my son. You present the issues so respectfully and with such sensitivity. You really are such a uniting voice for our community.

  24. Jess,
    I was very naive about the almost “war” between the two ends of the spectrum until a few months ago, so I appreciate your writing about this. I totally agree “there is no one autism.” Your prospective is always sincere and to the point. Thank you again for sharing your experiences at the White House and for sharing Katie’s, and Idil’s stories with us too.

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