Saturday, April 30, 2011

The Stories We Shared

On March 24, the editors issued this invitation: TPGA would like to share an autism perspective: yours.
As members of the autism community, we know that awareness is only a first step. Increased awareness brings opportunities to share our experiences and strive for what people with autism deserve: understanding, and acceptance.

...Please send us a short essay on one thing you want readers to know about autism -- as it relates to you. Share what you’ve experienced or witnessed. Tell readers about a formative experience; something joyful, or a brief moment of despair. Share your hopes, dreams, past, or future. Anecdotes laced with humor -- however dark though not mean-spirited -- are especially appreciated.
We published 22 stories, vignettes, and interviews.

Six personal stories from people with autism
  • Corina Lynn Becker, Why I Am Wearing Black For this young adult with autism, April "is month of reflection, of remembrance. It is a reminder of how deeply events can affect mental health, even for Autistic people. It is a reminder of how far I've come, what I've gotten through, and how I've become stronger. And it is a reminder of my loved ones and support network, with whom I am never alone."
  • Carol Greenburg, An Interview with Carol Greenburg TPGA's editor represents many aspects of the autism community, being herself autistic, a special education advocate for parents and students, and the parent of a child with autism. This wide-ranging interview covers all the bases.
  • Leah Jane, Autism Acceptance for Autism Awareness Month Leah Jane is an adult with autism, and calls for throwing away Autism Awareness, and replace it with Autism Acceptance, lead by autistic people themselves.
  • Kristen, My Fights with Autism and the Need for More Awareness An 18 year old high school student's memories of her childhood, and her dreams for a better world: for real autism awareness and acceptance.
  • John Elder Robison, An Interview with John Elder Robison Mr. Robison has recently published his second book, "Be Different: Adventures of a Free-Range Aspergian". In this interview with TPGA editor Jennifer Byde Myers, he discusses being diagnosed will into adulthood, the need for both research and support, and practical tips for people with autism.
  • Zoe, About Stimming An adult with autism discusses the reasons for and benefits of stimming: "..that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim. "
Three posts on autism in the media; autism and public policy
  • On Autism and Wandering This month, the proposal for a diagnostic code for wandering became a hot topic of debate. TPGA editors interviewed two people: a mother whose son has autism and for whom wandering is a serious safety issue; and Dr. Paul Law, Director of the Interactive Autism Network (IAN) at Kennedy Krieger Institute, which undertook a pioneering survey of wandering (elopement) and autism: in childhood and adulthood.
  • Emily Willingham What is it About Autism Meditation on the meaning & magnetism of autism, in the media and personally.
  • Zoe Headlines: Abuse and Empathy This post reviewed recent popular stories and ended with the call: "Let's take a moment to remember the connection between people who speak about us as though we are not human and people who treat us inhumanely."
Three Stories of Autism Acceptance and Inclusion from the Neurotypical Point of View
  • Liz Ditz What Am I Doing Here? One person's road to becoming an advocate for autism inclusion and acceptance
  • Rob Gorski, My Broken Heart: The Bare-Handed Man An autism parent meets an older man, possibly with autism, and is profoundly moved. "All I can think about is that the bare-handed man could be one or more of my kids in the future."
  • Kris Robin, Little Songbird An accidental encounter becomes a touching joy for two families.
Ten posts from Parents

  • Alysia K.Butler Wonder On the occasion of her son's fifth birthday, a mother enumerates her son's wonderful aspects and how parenting him has changed her heart.

  • Dawn Comer, Purple Sucker Reflections in poetry about the younger sister of a boy with autism

  • Christa Dahlstrom, Seven Years Old A Mother's reflections on her son's growth and his challenges and strengths

  • Kim Dull, The "A" Word When a diagnosis, a label, actually improves opportunities for a child.

  • Rivka Iakullo, Randomness A mother, three years after diagnosis, reflects on the path up to and after her son's diagnosis. "That’s right, randomness. Not just a word, not just a long word, but a word that was a comment on itself."

  • Sarah MacLeod, Patience, Awareness, and Justice The mother of an older child with autism meditates on the meaning of "awareness", for her son and for those who meet him.

  • Spectrummy Mummy, My Fight "My fight might not be the same as another mother's, but we still fight together, and our fight will always begin with awareness. "I'm buying the light for awareness. My fight is for understanding and acceptance.""

  • Kristen Spina, All I Have to Say "I don't have any answers, I simply have this boy. This funny, fantastic, exasperating, infuriating, wonderful, wild, quirky, sweet and fabulous boy."

  • Amy Spurway, Mother of a Child with Autism A mother notices that not only are all people with autism unique, but so are mothers of children with autism. "I've learned something very important about labels: It is just as useless and irritating to stitch them on people as it is to stitch them on clothes. Sometimes it's better to rip them off before they drive you nuts."

  • Squillo, Two Steps Forward, One Step Back "It seems the steps forward happen, not just for Squidboy, but for us, and for everyone else who has been learning to deal with his differences."

  • Alphabetical list by author's surname:
    1. Corina Lynn Becker Why I Am Wearing Black
    2. Alysia K. Butler Wonder
    3. Dawn Comer Purple Sucker
    4. Christa Dahlstrom Seven Years Old
    5. Liz Ditz What Am I Doing Here?
    6. Kim Dull The "A" Word
    7. TPGA Editors On Autism and Wandering
    8. Rob Gorski My Broken Heart: The Bare-Handed Man
    9. Carol Greenburg An Interview with Carol Greenburg
    10. Rivka Iakullo Randomness
    11. Leah Jane Autism Acceptance for Autism Awareness Month
    12. Kristen My Fights with Autism and the need for
    13. Sarah MacLeod Patience, Awareness, and Justice
    14. Spectrummy Mummy My Fight
    15. Kris Robin Little Songbird
    16. John Elder Robinson An Interview with John Elder Robinson
    17. Kristen Spina All I Have to Say
    18. Amy Spurway Mother of a Child with Autism
    19. Squillo Two Steps Forward, One Step Back
    20. Emily Willingham What is it About Autism
    21. Zoe Headlines: Abuse and Empathy
    22. Zoe About Stimming

    Friday, April 29, 2011

    My Fights With Autism and The Need for More Awareness


    Kristen is eighteen years old and currently in her third year of high school.

    A statement I have always found confounding is, “I wouldn’t wish it on anyone.”

    Let me explain: I find this confusing because what if "it" could be beneficial or insightful for the whole of society? What if perspectives widen because of "it"?

    Who am I? I am an unknown Aspergian. I was diagnosed at the age of three, but with no follow up afterward. My childhood consisted largely of unwanted (probably neurologist) doctor visits where doctors would run test after test, and force me to look them in the eyes. I grew up with a degrading “you’re not normal” mentality. Needless to say, my childhood, like me, wasn’t "normal." The doctors finally concluded that I had ADD and gave me Ritalin, which was useless.

    If that wasn’t cruel enough, in second grade I finally realized how “different” I was from the rest of my peers. I was friendless and lonely in my elementary school, save the occasional nice kid. The realization came in spring, when my school was in full standardized testing mode. I was probably in some independent learning program full of kids who were nearly "normal," but not quite. But I’d made a friend, woohoo! The problem was that my friend, along with the rest of that friends' class, would be testing in one classroom while we the “resource room kids” would test in another.

    I was devastated. I was already sad when I had to leave my class during math to go to the resource classroom. The separate testing took those feelings to a whole new level. I had been looking forward to testing with the entire class! I wanted to prove to my parent that I too fit in! So, when testing came, I was so distraught that I gave absolute minimum effort. I didn't care how “fun” the teachers made the test sound. All I cared about was that I was once again kicked to the curb.

    Luckily, in my little genius mind, a plan began to brew. It finally developed and burst with magnificent ingenuity. Until then I had stimmed and murmured to myself with reckless abandon. But what if I acted like everyone else? It was a brilliant plan then, all brand new. With this idea in hand, I began to observe and parrot. With difficulty, I pushed myself to stop stimming and kept my murmuring to an absolute minimum. I stared into the eyes of my peers. Most importantly, I acted sociable and "nice."

    My plan had grand success in third grade because I gained three close amigas! One moved away, and the other and I grew apart, but then I made five friends in fourth grade. Fast forward to the eighth grade -- one of the dreaded middle school years -- and I had a full lunch table of four good friends and four extremely close ones. I was excelling in my subjects and had plans for high school. Life couldn’t get any better.

    Except I was forced to leave those friends behind to be dragged into an alien state where I didn’t know anybody! Fast forward, once more, to tenth grade, also known as sophomore year. I’d switched from the public high school, as this state happens to have, in all honesty, crappy public schools. My new school was private and small, like my old elementary school -- but without the warmth. As in second grade, my closest friend became the air. Oh, and the next year wasn’t better -- I developed the precious skill of dodging paper balls.

    So, as Autism Awareness Month wanes -- I see no change. I was not even aware of AAM until I read the blogs of my favorite Aspies and autistics. Most awareness months kick off to something spectacular, but as I see it Autism Awareness Month only whispers its arrival from the shadows. At my school, nobody -- not an exaggeration -- knows or show interest in AAM, including some of the faculty. With all the media coverage we see about autism, it really needs to make itself heard on April.

    Thus, a harsh idea would be: let autism affect everyone. In my perfect world, every family would be impacted by autism in some way, shape, or form. I’m not saying that every family would have an autistic child. I’m saying that neighbors, parents, siblings, friends, bosses, or employees could give their neurotypical pals insight. In my perfect world, autistic adults and teens -- not doctors or the latest “cure” fad -- would get airtime on the news. In my perfect world, autistics like me would be given the respect and dignity that we deserve.

    Every autistic would be given the greatest therapeutic and medical support from day one. We would not become lab rats for the latest diet or cleanse. Our medicinal needs would be aimed solely at improving our lives. New facilities that support us would be created in every town and city. Most importantly, insurance would finally listen to our parents and/or us and stop denying us therapies that would vastly improve our quality of life.

    Thirdly, we would not need to hide our disorder. I would be able to announce to my entire school the important lessons of autistic life. Families would not burn with shame, regret, or humiliation over their autistic children. We would hold nationally acclaimed events in the name of our disorder. A real autism expert, not a self-righteous doctor, would find a permanent place on our news. Our entertainment programs will feature more and more autistic individuals. With enough determination, we may even get our own television channel! Imagine the sight of seeing an Autism Network Channel (or something similarly named) on our TV! We would declare to every critic that if we were cured, if every piece of neurodiversity were snuffed, then society would come to resemble a nation of similar-minded clones found in science fiction novels.

    Finally, my greatest desire, these outspoken autistic adults and teens would travel the country and talk to schools. They would travel to every crevice and corner of the USA and educate teens on life with autism, and dispel harmful myths. This is the best and most educational form of awareness I know of.

    But we have yet to gain our rightful power of speech. Instant experts; careless, attention-greedy parents; and the token celebrity have stolen our stories and perspectives. Many of our youths are being trained to stay silent and let others guide them through life. We need to gather, and catch society’s fickle interest and make people want to listen to us.

    We must also grow more motivated. We need not just to demand, but also to create more and more changes. My perfect world may be a fantasy, but if everyone, neurotypical and autistic, brought their ideas to the table and took steps to make them reality, then we would end up with a society that is perfectly win-win.

    With the help of the media and our own hard work, we can create not only a more powerful Autism Awareness Month, but also a true neodiverse celebration.

    Wednesday, April 27, 2011

    Patience, Awareness, and Justice

    Sarah MacLeod

    During announcements, my heart dropped.

    The service leader announced, "Remember that at noon, we have our congregational meeting about the accessibility improvements to the church."

    To be clear, I completely support the church's improvements plan and the capital campaign required to bring them about.  Armed with my knitting, I knew I'd get through the potentially too-long meeting to put these issues up for congregational vote.  While the meeting may be tedious, it's truly democracy in action, and the improvements are necessary. Our church is built on four different levels, connected only by stairs.  We're without an elevator (action item number one on the list), accessible bathrooms (item number two), and many other amenities that would make our facility the accessible building it should be.  It's an old building (the meeting-house is 160 years old) with numerous additions made over many years, resulting in a markedly unwelcome building for those with disabilities for a church that prides itself on being a welcoming congregation.

    So it wasn't the subject of the meeting, or even the meeting process itself that caused my apprehension. It was the dread of my younger son's reaction to the news that we'd be at church, a place he usually likes, for an extra hour or more. That part would be a surprise, which he doesn't like.  My older child was likely to groan a bit, then join his similarly trapped peers. He would complain just enough to let me know that he'd rather head home.  But my younger child, recently diagnosed with an autistic spectrum disorder, was likely to revolt.  Loudly.

    "We're not staying for that, are we?" he stage-whispered to me.

    I started with an apology, attempting to curry some good will from my son, and added that I'd forgotten the meeting myself.  Briefly, I contemplated a quick escape after a cup of coffee in the hard-to-get-to-if-you-have-difficulty-walking-down-stairs gathering area.  But, as much as I wrinkle my nose at the thought of a long back-and-forth (or whatever it is when Robert's Rules of Order are followed) about the accessibility  project, I delight in the democratic process of my church and the earnest, honest way it plays out.  I took at deep breath before replying, "Yes, we'll be staying.  It's like election day.  I have to be there to participate."

    My younger is apparently more enamoured with dictatorship than democracy (unless the vote goes his way) and was unmoved.  He was caught unawares. He had no template on which to draw for how the time would play out while I was in a meeting, and he had had enough of people.  Somehow, he dropped the issue for the rest of the service, although I knew I wasn't in the clear.

    Sure enough, as soon as the service ended, he started back on the issue. Why did we have to stay? How long would the meeting be?  Where would he be during the meeting? When could we go home?  Did we really have to stay?  We were staying, I calmly told his panicked visage. We'd stayed before for these meetings (albeit with mental preparation, for a few days ahead), and he'd be fine.  He went on for a while then galloped off, not happy but no longer looking panicked.  Before heading into the meeting, I noticed he'd made his way into the room where the younger children would be supervised during the meeting.  I didn't dare make additional contact, and seeing that he looked content and busy, I headed into the meeting.

    An hour later, the vote for the needed changes secured, I gathered my knitting and went to find my boys.  My younger dodged the crowd to get to me, with no telling expression to let me know how it went.  He made up for his impassive face with the first sentence. He was full of indigent anger, "They kept me prisoner in there!  I told them I wanted my freedom, and they told me I couldn't leave!"  Tears came to his eyes as he gestured wildly to punctuate his take on the injustice.  As we wound our way to the coats, then to the car, gathering his (older and therefore free) brother, his tirade continued, fury mounting.  I attempted to get an accurate picture of the situation, doubting an hour under the care of some middle and high school youth that conditions were quite as desperate as he stated, but reason had long departed him.  On our way out of the building, we ran into one of the "bratty high-schoolers"  who had kept him from "escaping."  The youth raised his eyebrows as he listened to my son's tirade, then turned to me and said, "He is really persistent when he wants something."

    Tell me about it.  I stumbled over a quick response, acknowledging my young son's tendency to get a bit stuck.  My son screeched again, and out the door we flew.  As we walked through the parking lot, my older son pointed out a magnet on the back of the car next to us:  Autism Awareness. "Hey, look!  They have the same magnet we do!"  His effort to distract his younger brother was unsuccessful, but the irony struck me.  Autism Awareness. Yeah, I've got that.

    On the way home, I tried to ferret out more details, but he was so wrapped up in his perspective that little came forth.  Knowing him as I do, I'd venture that he had indeed asked to leave (loudly, and with references to prison) but hadn't asked to be reunited with me in the meeting, as this request would have been met.  I explained again about safety and the need for the younger children to have some supervision while the meeting was in progress, but he remained stuck.  After all, he maintained, usually after church, while the adults had coffee and conversation, he ran around the playground or hung out in the church without being "imprisoned."  I got nowhere, and, fortunately, he ran out of steam by the time we arrived home.

    Autism Awareness. Awareness that the unexpected is his enemy and predictability his ally.  Awareness that justice for him means adults and children (and even "bratty teenagers") should all have the same privileges.  Awareness that while his words flow freely and his ideas are complex beyond his years, his understanding of how to navigate the neurotypical world he inhabits is relatively underdeveloped.  Awareness that he can learn, with patience and support, how to navigate this world with, I hope, relative comfort.   

    Autism Awareness?  Yeah, we've got that.

    Tuesday, April 26, 2011

    The "A" Word

    Kim Dull (Coming Soon!)

    I’m a mom to three kids. I have a daughter, who’s almost seven. (I was going to refer to her here as Princess BossyMcBossypants since she thinks she's in charge of the household, but that seemed a little excessive. So we'll go with Princess.) I have a son, who’s five and a half (heretofore referred to as Monkey Man). And I have another son, who’s almost four (let's call him Bubs).

    Princess is what you'd call "neurotypical," or "typically developing." In other words, she's a normal stubborn, bossy, temperamental, yet ultimately very sweet and caring little girl.

    Bubs has some slight developmental delays. He receives therapy for speech, fine motor, and social concerns. But we've been very lucky that he's pretty much caught up with his peers thanks to early intervention and the services provided by our local school system.

    But this story is about Monkey Man. He developmental delays and sensory processing disorder. And he was diagnosed with autism.

    *GASP*! She said the “A” word!

    Yes, I did. He’s very recently diagnosed, in fact. We’re still processing this and it oddly resembles the stages of grief.
    1. Denial. I wonder if the diagnosis is accurate. After all, he doesn’t behave like what we expect from an autistic child. He’s loving and happy. He plays games with his siblings and loves his trains and cars. We went to a facility based out of a well-known university’s school of medicine. Are they in the business of tagging kids with this label because it’ll help get research?
    No. He likes his trains a little too much. For as long as I can remember he’s been interested in spinning wheels on trains, cars and baby strollers to the point of obsession. That’s not to say he doesn’t play with his trains the “right” way. Of course he does. But he gets down on eye-level with the trains so he can see where they’re going. He squooshes his face against the TV screen for no discernible reason other than to be close to the action. He has no sense of personal danger and likes to jump off very tall things, scale any surface that’s not completely vertical and flat, and run smack into anything handy. He loves snuggles and “alligator rolls” in my lap. You know how an alligator rolls and rolls and rolls their catch underwater to drown and eat it? Monkey Man does that in my lap. Awesome, right?

    There are so many other behaviors that we took to be normal but are actually not. And the thought that the evaluating facility would label a child as autistic just for kicks and giggles is asinine. That’s Denial at work, I guess.
    2. Anger. Well clearly we’re still living in the land of denial. I don’t foresee getting angry, though. Unless you count anger at myself. Of course as a parent -- and as his mother in particular, who had the sole responsibility of caring for and nurturing him during nine months in the womb -- I can’t help but wonder what I did wrong. Did I drink too much coffee while I was pregnant? (I drank coffee, but it was at most a cup a day, which is perfectly safe.) Did I drink alcohol? (Uh, no. And believe me, I could have used a glass of wine a time or two during that pregnancy.) Did I ... Did I ... Did I ... ??? The questions I can ask myself are endless.
    I’ve been struggling with these questions since he first started early intervention for speech and developmental delays at 19 months. Truthfully, I think it started even earlier. At 13 months of age Monkey wasn’t growing and they didn’t know why. He’d gained all of nine ounces in four months. Clearly this was a concern. He was diagnosed Failure to Thrive and we then spend the next six weeks going through countless doctor appointments, specialists, and tests. He was checked for Cystic Fibrosis, Renal Tubular Acidosis, growth hormone deficiencies, and even Celiac disease. All came back negative. In that six weeks I think our son had more blood drawn and tested than his father and I have had in our entire lives. It was six weeks of anguish, worry, fear, and sadness at seeing our baby put through so much with absolutely no results. In the end they basically said we just needed to increase his calorie intake. Really, docs? Really?? We vowed then and there that if we ever had any more children we would never put them through such an ordeal.

    But you know what? When I feel guilt and anger at the situation, and I start blaming myself, I just need to remember that most likely there is nothing I could have done to prevent this. At least that’s what I have to tell myself so I don’t descend into a sadness and guilt spiral.
    3. Bargaining. Yeah, I can see this happening. It probably already is. “Just let him do well at school.” “Please let the OT and feeding therapy work so he doesn’t spend his life living off peanut butter sandwiches.” “Please please please let him be potty trained by the time he turns six.” (I know, that last one is a doozy.)

    4. Depression. If you think I haven’t gone through bouts of depression with this then you’re smoking crack. Of course I’ve been depressed. I’m sad that he’ll probably be “different” his entire life. I’m mourning the fact that we’ll never have the little boy we thought we’d have. By now he should be chatting up a storm the way his sister did. He should be driving us insane by asking “Why? Why? Why?” all the time. He should be dressing himself and even probably choosing what he wants to wear. He should be using the potty and learning how to stand and pee like a man.
    But he’s not.

    And then the guilt creeps in. Why do I feel this way? He’s happy and healthy. He doesn’t care that he’s different. He doesn’t even realize it. Why should it matter to us?

    I don’t know. It shouldn’t. But it does.
    5. Acceptance. I’ve accepted this on paper but it’ll be a while before I can accept it in my heart. Every friend or family member I’ve told has heard the same thing:

    Yeah, we had him evaluated intending to rule out autism. Instead it was confirmed. But it’s okay. Now he’ll have a world of resources available to him that weren’t there before. No one likes a label, but if that label is going to open doors for him that would otherwise be closed, then I'm okay with it.
    All of the above is 100% true. Well, except the “it’s okay” part. Because it’s not okay. It should be. But it’s not.

    Will it ever be? Eventually. When I finally reach #5.

    Monday, April 25, 2011

    An Interview with Carol Greenburg, Autism Women’s Network Regional Director

    I met Carol Greenburg last summer at the BlogHer conference in New York. Her confidence, humor, and commentary made her instantly appealing, but her kindness, fierce intelligence, and advocacy skills make knowing her both a luxury and a necessity. She is the executive director of Brooklyn Special Needs Consulting, and serves as the East Coast Regional Director of the Autism Women's Network. She joined the Thinking Person’s Guide to Autism’s editorial board in January, where she adds her depth of knowledge as an advocate, parent of a special needs child, and an adult on the spectrum. ~Jennifer

    I’ve joked with you before that you really “have it all.” You’re an adult with Asperger’s syndrome, the mother of an autistic child, and an advocate in the autism community. Do you have trouble switching hats? Do you compartmentalize? 

    I try to compartmentalize. I think that’s the only way to really do it. It can be really hard because sometimes I feel like I over-identify with my son, and his experience is very different from mine. He’s language delayed, and I’m not. That makes a world of difference, and honoring that difference and frankly how much more difficult his life is day-to-day because he’s more obviously autistic, and I “can pass,” while still saying I have a sense of what he’s going through. That’s a difficult balance.

    Which role challenges you the most?

    Advocacy is kind of a breeze; it comes naturally to me. Being autistic, I don’t have any other frame of reference, though I do have a sense that it must be nice not to have to deal with some of the things I deal with every day. But then again, I have access to a lot that non-autistic people don’t, so that sort of balances out.

    I think being a parent is hardest, just because being a parent is harder than anything else in the world.

    Is it harder to advocate for your son?

    I have to keep a cool head; go to the IEP meeting and listen to what they have to offer and not talk too much. That’s hard for me under any circumstance, but it’s particularly hard when it’s my son. And it’s interesting when they don’t know I’m an advocate. It’s not going to last forever, but some places still haven’t figured it out after all this time. When they did at one agency, after they looked me up on the web to find a phone number, all of a sudden it was more like, “What can we do for you?”

    How did you move into advocacy work? Was it a crisis? A calling?

    It started in crisis. About a week after her son was diagnosed with “somewhere on the spectrum,” one of my best friends was diagnosed with an aggressive form of breast cancer. She called me up, and she said, “I can’t do both.” So I said, “Okay. You fight cancer, and I’ll fight for his schooling.” And that’s the day I started.

    When I became an advocate, when I decided to turn pro, it was because my husband and that child’s father talked me into it. I was able to get that child some services that other people didn’t seem to be able to get for him.

    Is that because you’re scary? Or talented? Is it that you use the right language?

    It’s mostly because I’m scary. No, I really studied a lot about diplomacy and conflict resolution when I worked on my masters degree. I also come from a long line of women who complained about customer service. My husband reminded me that I was born for this job. It really is customer service.

    The child I was advocating for was not getting transportation. No bus. My friend was going to MRIs and chemo and had no regular access to a car anyway, and her kid was not being picked up by the bus. So I had arranged for a car pool, and one day the other person in the carpool just couldn’t do it anymore, and my friend had an emergency scan, so I took my son and went to the other school, and there I was standing in the yard, holding the hands of two little autistic boys talking to the Assistant Principal who had been promising the parents transportation for so long. He was trying to bond with me. “Oh, isn’t it horrible we can't get transportation for this family?” As if I would sympathize with him because he had made a few phone calls. So I said, "Yes, it really is awful that you can’t get transportation, and I’ll tell you why. You are in violation of federal and state law every time you fail to provide this child access to this school. You are denying him free and appropriate public education. And someone is going to need to answer to that, and that’s not going to be the district, I think it’s going to be you. So yes, it really is a shame that you don’t have any power to do something about this.” And I said it very loudly, and in front of his entire staff. I left with the two boys, and I thought I’d really stepped over the line. Then I got a call from the dad “We’re getting a bus tomorrow on the condition that we never send you back to that school again. I don’t know what you said, but it worked.” So we laughed and laughed, and he was saying that I really ought to turn professional, and my husband was saying why are you laughing? So I started applying for Wrights law courses to learn, but a lot of it does come naturally to me because I have a way of threatening people without sounding threatening.

    What’s that one piece of advice you give to parents who have a child in the school system?

    I think that the relationship with the district and the school is every bit as important as getting the services, because you are going to need to go back to those people the next year. That’s why you have to be able to take a strong stance for your child without coming off as a crazy person. You have to find common ground.

    And sometimes those teachers are just as frustrated; in fact it is not the teacher’s role to be the advocate. Teachers who advocate for their individual students often get fired. It’s the role of the teacher and the district to be the resource for good information, who to go to, and then it’s the parent who is the advocate with the back-up of those organizations.

    The teachers, the principals, they are in a terrible bind, the federal government says “You have this mandate but we don’t owe you any money to do it. So good luck.” And they constantly have to make an impossible choice; they have to ration. The parent who advocates get services for their kid and the ones who don’t know their rights, they don’t get those resources.

    So what is that one piece of advice?

    “Think about your rights but talk about your responsibility”

    So if you walk in and you say, “I know my rights, and his needs dictate that he gets speech 3x a week, and need dictates everything, so you have to give it to him.” You’re not going to get as far as the parent who says, “We’ve been told by an independent authority that he needs speech 3x a week, and we understand that the school has been offering 2x a week. How do we work together, to partner, so that he gets his needs met?”

    If you’re bringing up the law in an IEP meeting you are probably going off course. Remind them of their responsibility, but phrase it in terms of your responsibility, “I am responsible for my kid turning out to be an educated person. Help me fulfill my obligations by helping me with resources.” Rather than “You better do this.”

    You spoke about parents who know their rights, and I realize I have guilt because I know how privileged I am, and I have an expectation to speak with someone who can make decisions, and there are only so many resources…

    The language gap aside, in many countries one does not ask the authorities for anything, and there are a lot of people who are coming from cultures where they wouldn’t dream of asking. There are an enormous number of reasons why someone might hesitate to ask for services. Also, quite often it is women asking, and women have more trouble asking. Men have less trouble asking for what they want, which is just cultural conditioning.

    I get calls about these awful cases asking for help, but there are resources for free advocacy. So I have to tell them up front, that my organization is for profit, it is my living, so if you can pay me, hire me, and if you can’t, here’s a list of organizations who do it for free. Private is going to get further, but there are places that will help for free. It is my policy that no one walks away without a phone number or an address or something. And I try to give them some tips on how to get that advocacy.

    But if I lived in that place of guilt I would not be able to get anything done for anybody. And one thing we’re doing, as parent-advocates or professional advocates, we’re setting precedent which lays groundwork for other children.

    You are successful, accomplished, and employed, but there are many adults with autism who are struggling, what support systems are missing?

    Having lost most of the jobs I ever held, because I was one of those unemployable, very highly-educated and perfectly capable autistic adults for most of my life, I have found that working free lance was the only way to go. And you will find a lot of autistic entrepreneurs for this reason.

    When autistic people have control over their environment, when they are physically, emotionally and socially in control, they can be more successful. You’ve got to have the chutzpa to say, “Here’s what I need in order to succeed.” And that chutzpa is something that can be very hard to get. Self-advocacy is the single-most important skill any parent can teach any child; being able to stand up for yourself and say here’s what I need without insulting other people. And for autistics, acknowledging to yourself that there’s nothing wrong with you because you can’t use your abilities in the way that other people do. I will never be able to hold a “regular” 9-5 job and really succeed in a big corporate environment. Once I let go of the notion of a regular job, that really freed me up a lot. And freelance in this economy, that’s not such a horrible thing.

    Of course then you have to figure out health care.

    Well, there’s another area of advocacy that needs more people. Hey, there’s a good place for autistic people to look for work.

    One of the things we’ve talked about at TPGA is that information about the transition from autistic child to young adult is missing. Do you think job skills training or life skills training would have helped you?

    If I had some of the skills most people have by the time they finish high school, I might have been able to survive in an office environment. But what I found most difficult was not being able to participate in office politics. I have a real disability. If you are really bad at subtle facial expressions, or if people are saying one thing and meaning the opposite I can’t tell, and if I can’t do office politics I can’t be in an office.

    Social skills are really very important. All of those little skills that make people say,  “She’s such a nice person, ” or, “She’s great to hang out with,” those are often more important that job skills per se.

    Talk to me about humor. You said once that you don’t expect to get every joke, and you really don’t want to have them all explained to you. I love your humor, it seems to be dark like mine.

    I do have a very dark sense of humor. I have a very good sense of humor, but what I think happens, and I think this happens with a lot of autistic adults, if there is any disequilibrium, it puts us at a different level of functionality. Disequilibrium, even for a few seconds, and my ability to joke around and understand sarcasm, for example, is gone. I become tone deaf to it when I am in a particularly autistic state, and I really don’t know if people mean things literally. And that can happen at any time, if an alarm goes off, or a light is too bright. One of the hard things about being autistic is that you never know when you are going to be more or less autistic. I think that’s hard for all of us with autism. That’s why the notion of functionality is not offensive, it’s meaningless. I’m talking to you now and making some sort of sense, but if something happened, and the light bulb blew out, I might lose language completely. You never know when it’s going to happen. You never know when you are going to find yourself standing in the middle of the street not knowing how to dodge the cars, or where you are in relation to them. You never know.

    Does that make you scared? Or panicky?

    I haven’t met many autistic people who don’t suffer from significant anxiety and depression. So yes, I’ve always had anxiety problems. What I hadn’t realized was that I thought I was having anxiety attacks, but I was really having autistic meltdowns. I only came to this conclusion after reading a book by Deborah Lipsky (and Will Richards),  “Managing Meltdowns.” She’s an autistic adult with a MA in Education. She's a very highly-educated, articulate woman who found herself wading in a river and almost drowning because she became dysregulated. She became agoraphobic, it was really hard, but once she understood these episodes as meltdowns; they became much more manageable.

    So if you put it in terms of dysregulation and encapsulate it into periods of time, you don’t think you're like that all the time which could make someone feel so out of control and depressed.

    Most autistic adults do feel depressed because they feel out of control--because they don’t know when it’s coming.

    So maybe a little like epilepsy? So do you know afterwords that you are in control again?

    Yes. I’ve always had an interest in epilepsy because of that sort of connection. Science is starting to draw a lot of connections between autism and seizures. Also that autism, in and of itself may have a seizure disorder component. Now that I know that it’s an autistic meltdown, I’ve learned the signs; I can see it coming on. Part of it may be because I’m the parent of an autistic child so I can see it coming on with my son and I can translate that. I can see I am entering a very autistic mindset because I’m obsessing over one thing, or there's more rigidity, or there’s fear that is not in proportion to the cause of the fear. So then I think to myself it’s time to find a safe place or go have some tea. I will always have meltdowns. It’s a question of how I deal with them.

    And how you take care of yourself, and how you seek accommodation?

    I feel like the more often I have to encounter the need for accommodation the more empowered I am. Recently I traveled on a plane, and while the TSA is much more sensitive to these issues, I get stopped more often because my face has lower affect. (That is what profiling is supposed to be about by the way. That’s appropriate. You should profile on the basis of behavior not race- I probably do look different.) I was thinking, I can pass as neuro-typical. I can make it through an airport security line, but that would be really stressful for me. So I thought, why don’t I try not to pass? Why don’t I call them and say I’m autistic, and I will probably be okay, but can you do this or do that. It was really hard for me to do because it meant outing myself, making myself vulnerable, but ultimately it made me feel very empowered because I was able to ask for what I needed. No one made fun of me. No one told me I didn’t need it.

    And you were in control of “outing yourself.

    Yes. There is a big difference between a secret and something that is kept private. I used to have to hide my difficulties. I no longer have to hide them. So for the first time in my life I played the “autism card” on a plane, and said I needed to pre-board, I have a disability. And the only thing they asked me was, “Do you require a wheelchair?” which is perfectly reasonable. They didn’t question me. No one said “No you don’t.” I preloaded and it was so much easier. I take forever to get myself organized, so I know what I have within reach. Previously, I was always getting in people’s way, and my proprioceptive awareness is so poor that I never know when I’m in someone’s way. Then they get annoyed with me, and I always get yelled at. So this time, I took it upon myself to ask for help. I have the right not to get yelled at, and if this is what it takes, it’s what I’m going to do. I also decided I was a hypocrite if I didn’t do it. If I’m going to be @AspieAdvocate, and preach self-advocacy, I have to walk the walk.

    And you didn’t use all of that emotional energy to deal with just getting on the plane.

    Right! I sat next to two young children. Now, I would like to think I would have been gracious otherwise, but I know it was a lot easier for me to be understanding of them and their needs because someone had understood my needs.

    So this touches on real autism awareness. Real autism awareness is that, this really is invisible, but you really can listen to people and they can tell you, and you really can accommodate. It doesn’t take that damn much.

    I’m proud of you for asking for that accommodation. There is no shame in having autism, but I’m guessing that admitting you weren’t good at something, that didn’t sit well with you.

    It’s a huge thing for me. Not that I’m not all out there about being autistic, but having to admit that I’m not so good at this...

    It made me feel vulnerable, but tough on me. Life’s not fair. And it’s the only way my son is going to get through life, and if I am going to raise him properly, I will need to model that.

    Saturday, April 23, 2011

    Headlines: Abuse and Empathy


    WARNING: this post discusses child abuse

    We are two weeks into Autism Awareness Month and I count three casualties so far. Two stories in the news this week, of three autistic children murdered or abused by their parents and caretakers.

    In Washington, two autistic boys (ages 5 and 7) were discovered locked in a cage, where their father and his fiancee kept them every day, in unsanitary conditions. They weren't allowed to walk around the house or to go to school. I don't know their names. Their father, John Eckhart, told police, "What am I supposed to do? Let them run around the house? They're autistic."

    In Massachusetts, Kristin LaBrie was found guilty of "attempted murder, assault and battery on a disabled person and a child, and child endangerment," after she withheld chemotherapy drugs from her 9-year-old autistic son, Jeremy Fraser. This actually happened years ago, but was in the news again this week because of the sentencing. Jeremy was non-verbal and had lymphoma (blood cancer). He had been getting treatment at a local hospital, and his cancer was in remission. When he was moved home from the hospital, doctors gave his mother medication to give to him, and predicted that he would recover. But LaBrie did not administer the drugs, and Jeremy's cancer recurred, this time as leukemia. Jeremy died in March 2009. This week, LaBrie was sentenced to 8-10 years in jail, and 5 years on probation.

    These are only the cases which have made it into the news this week. There are many more autistic people out there, right now, facing abuse and neglect in their homes, in their schools, in institutions. Their suffering is being permitted, hidden, or ignored.

    Autism "experts" have already spoken up, defending the parents involved in these two cases. Neatha Lefevre, of the Autism Society of Washington, presented a stunningly sunny picture of the Oregon case. She told reporters: “The behaviors [of an autistic child] can be very challenging." Referring to Eckhart, who kept his sons in a dirty cage, she said, "When [parents] do this extreme, they feel this is the safest way to keep their children. The family will choose extremes because they don’t have good information.”

    As for the Massachusetts case, apparently even the prosecutor "[expressed] sympathy for the challenges of caring for a sick, disabled child." TIME Magazine ran an article which began by asking readers to place themselves in Kristin LaBrie's shoes: "Imagine you are a single mother suffering from depression, overwhelmed with caring for an autistic, nonverbal and developmentally disabled son. If he were diagnosed with cancer, what would you do?" The article quotes a Boston-area attorney as saying:
    "It can be so overwhelming for a single parent to deal with a child who is autistic, nonverbal, and developmentally delayed. It is cruel to add to that burden a diagnosis of cancer and a requirement that the mom administer medicine that will cause the child even more pain."
    TIME also quotes medical ethicist Cynthia Rushton, whose take on a mother withholding life-saving drugs was: "I suspect this mother was really trying to do the best she could for him ... what does it mean to be a good parent in this circumstance?" The article's author writes, "Was justice done? It's hard to know. Certainly, disabled children have rights. But moms do too, and it appears that LaBrie did not have adequate support."

    As with most cases in which a parent abuses or murders a disabled child, there are a lot of voices urging us to feel empathy for the parent, to imagine how hard it is to have an autistic child. As far as I know, these "experts" have yet feel empathy for the child, to imagine how hard it is to be an autistic child with abusive or murderous parents.

    Meanwhile, former PBS news anchor Robert MacNeil is returning to television with a special report called Autism Now. In a promotional interview, MacNeil described autism this way:
    "It delays the most -- delays or impairs for life -- the most human thing we have, which is our ability to look into each others eyes and feel that other person's existence and what might be going on in their mind, and to empathize with them. That is denied -- largely denied -- to children with autism."
    Rachel Cohen-Rottenberg addresses this claim with an open letter, posted here.

    Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care. And every day, people tell each other that autistic people are the ones who lack empathy, never pointing out that often, it is neurotypical people who do not have empathy for us.

    Let's take a moment to remember the connection between people who speak about us as though we are not human and people who treat us inhumanely.


    A version of this essay was previously published on, on April 16, 2011.

    Friday, April 22, 2011


    Rivka Iacullo

    My son CJ is now five years old, coming up on six. He’s a bright boy who loves reading (though he doesn’t like demonstrating his skill on command), tow trucks, playing outside, and the color orange. He spends hours on the weekends enacting strange and elaborate imaginative scenarios with his younger sister Claire, who functions as his trusty sidekick. (One of their favorite games is “Princess and Customer,” something I could not make up myself if I tried.)

    CJ was diagnosed with autistic disorder at the age of three. He is sufficiently high-functioning that it took me a while to wrap my mind around the possibility of autism. This is, I believe, at least partially because of the incompleteness of the short autism awareness blurbs that show up in parenting magazines, pamphlets in the doctor’s office, and the like. They recommend action when children don’t talk, never make eye contact and spurn hugs and physical contact. They don’t tell you what to do when your child talks but uses language in unusual ways, makes eye contact (though intermittently) and begs for tickles and tight hugs. Plus ... my kid? The one who met all of his early gross motor milestones on time? Who makes sure my husband and I are looking before doing things to make us laugh? Who started talking on cue right around his first birthday? (His first word was “that.” It was a command for me to identify whatever he saw. He would point to objects and demand, “That!”) Who learned the alphabet before his second birthday?

    But there came the day not long after he turned three when I felt like I could no longer avoid certain questions, and I finally allowed myself to read the DSM-IV criteria for autism. Upon seeing those words, I felt like I was going to faint or throw up. Nearly everything I had been secretly wondering about was there: lack of conversational language, pronoun reversal, never asking questions or requesting things, pointing out objects of interest for his own reference but never to draw someone else’s attention, constant quoting of cartoons or overheard conversations, intermittent (and decreasing) eye contact, difficulty connecting to kids his age, limited imaginative play, obsessions with certain routines and things (especially trucks, and more particularly their wheels), toe walking, hand- and arm-flailing, extreme resistance to toilet training.

    Initially, I felt like the shock and fright would drown me, and I spent the better part of a week yelling at G-d whenever I had a moment to myself. But it didn’t last. There were a few thoughts that took hold in my mind very quickly:
    • This is the same child I have cared for and loved for more than three years. The word “autism” doesn’t change that. It just gives me a name for this situation.
    • Speaking of which, I am secretly relieved. I wasn’t off base when I kept wondering why parenting him seemed so much more confusing and tiring than it “should.”
    • He doesn’t need to be fixed; he needs help in ways I didn’t anticipate.
    Even before we got a diagnosis, we set about looking for that help. And thank goodness, we were lucky enough to find a succession of kind, dedicated, patient, and skilled therapists and teachers who offered practical help and not snake oil. I credit these fine people for engaging with him in ways that motivated him to work on his language, sensory, and fine motor challenges, and I credit him for his persistence (and frequent joy) in working on the same things.

    So here we are, coming up on three years since I let myself read that section of the DSM-IV and two years since the delivery of an official diagnosis of autistic disorder. And yet one of the best examples I can come up of what autism has meant to us comes from a time before we started down this path -- before we knew it existed, really.

    Shortly after CJ turned two (I think), he started lining toys and other things up, laying them out in sinuous, curving streams. His favorite subjects for this were his toy cars and the magnetic letters on his closet door. Not long after that, he started fashioning more complex structures. He’d pile toys up into elaborate three-dimensional stacks and carefully position magnetic letters into clusters that I thought of as “jumbles.” This happened before I was in a position to read anything into his behavior, so I just marveled at the weird and wonderful things he came up with, such as the time he moved most of his possessions into a couple of large concentric rings that my husband Walt and I dubbed “Toyhenge.” (That was really something to behold. It took him two or three hours to arrange, and we both agreed that there were patterns at work that we could sense but not quite define.)

    Walt got into the habit of peeking into CJ’s room when he first got home from work in order to see whether any words had appeared. We did spot a few three-letter words here and there, and on one occasion we found a four-letter word, “kiss,” at the beginning of one long, snaking line. We figured the words were random. CJ had learned the letters of the alphabet shortly before his second birthday but hadn’t, so far as we could tell, progressed to putting them together.

    One day, Walt came home and as usual popped into CJ’s room. I didn’t think anything of it until he called out to me, saying that there was something in the room I needed to see. He had an odd, vaguely worried note in his voice. I figured it was something involving a soiled diaper and went in.

    Walt pointed at the closet door to a jumble of letters. “Do you see that?” he asked. His face had gone pale.

    I looked. I started at the top left and looked across. R-A-N-D, I thought. Hmmm. Oh, there’s O-M, down and then to the side. R-A-N-D-O-M. Oh wow, that’s – wait. Is that ... ? Yeah, it is. N-E-S-S, down under the M. Randomness. How in the world did he do that?

    I narrowed my eyes at Walt. “Did you do this?” I asked.

    “No,” he said. “If it had been me, I would have written something dirty.”

    We both stared at the closet door, feeling unsettled and awed and confused all at once. Randomness.

    That’s right, randomness. Not just a word, not just a long word, but a word that was a comment on itself.

    And that is what living with CJ is like sometimes.

    Thursday, April 21, 2011

    Why I'm Wearing Black

    Corina Lynn Becker

    April is an emotionally charged month for me, April 1st especially. Up to grade six, it was because I dreaded April Fool's Day, a day dedicated to pulling pranks I did not enjoy. However, in grade seven, I was given more reason to not like the day.

    On his 77th birthday, my Grandpa had a massive stroke. The damage was severe enough that any operation would just leave him in a vegetative state. It was decided that Grandpa, a man dedicated to his work as a minister, would not be happy in such a state. So we just sat there for three days, waiting for him to die.

    On April 1st, at 8:30 AM, Grandpa passed away.

    It was the first time I experienced the loss of close relative. To me, it was losing a huge chunk of my foundational support. I had always assumed he would be there, and had based a lot of how I interpreted and defined reality on him. The result was devastating. I plunged head first into depression and Anxiety. Within a year, I started to contemplate suicide.

    It was a dark time of my life, and I've spent many years fighting daily battles against despair and hysterical panic. In the beginning, my parents and friends had no idea what I was going through, and when my mental state became apparent, were not sure how to help. They didn't know I am autistic, and so didn't know how to support me in ways that would actually help.

    However, through tireless effort, I have gotten this far. I am no longer tormented by constant depression and anxiety, and have learned how to deal with relapses, none of which are as bad as before. I'm certain that part of my progress has been my autism diagnosis, understanding how autism affects me, accepting the newly found parts of myself, and figuring out how to accommodate my limitations.

    It has been a journey of self-discovery, and as I've come to be aware of parts of myself that I like and are valuable, the outbreaks of depression and anxiety bothers me less and less. I am not completely free of them, but like my grief, I can manage it -- especially with the support of my family, friends, and support workers.

    So, for me April is month of reflection, of remembrance. It is a reminder of how deeply events can affect mental health, even for Autistic people. It is a reminder of how far I've come, what I've gotten through, and how I've become stronger. And it is a reminder of my loved ones and support network, with whom I am never alone.

    And that is why I'm wearing black this month.

    Wednesday, April 20, 2011

    My Fight

    Spectrummy Mummy

    Pudding hates DIY stores.

    The ceilings are too high, the lights too bright, the smells too noxious, the noises too loud, the people too many; we just can't go there with her. It is unbearable, and nothing makes it better.  So we just avoid going, easy as that.

    So most often Spectrummy Daddy goes alone, but this time he was ill, and though my Mondays are crammed, there was no putting it off.  Pudding was in school for the morning, so I took Cubby right after his music class.  He is more sensitive than she is, so I wasn't sure how he'd do, but apart from a lot of questions about the various noises, he did okay.  Phew.

    I only had a brief amount of time before I had to collect Pudding to take her to speech therapy, so I found a sales associate to ask where I might find the first item on my list.  She helpfully pointed me in the right direction. We admired the fork lift truck(!) for a while and then continued to source the rest of the items.

    I'd almost finished, when I walked by the stand for the "Light It Up Blue" campaign for Autism Speaks.  I'd been intending to pick one up before April first, so I walked purposefully over to the display.  Before I got there, I was intercepted by the salesperson who had initially helped me.  She asked if I wanted to buy a blue light bulb to support Autism Speaks, and I said I did.  She placed one in my hands, then thanked me for "helping to fight autism."

    It stopped me in my tracks. Fight.

    We hear about the fight against cancer, and diabetes, and in her mind, autism is just another disease that needs to be eradicated.  That autism epidemic, stealing away our children. Pudding is the kind of kid who just would have been missed in the past, she didn't change.  I believe there is an "epidemic" of kids who went undiagnosed in the past.  Some of her symptoms became more noticeable, but she is the same person.  She wasn't stolen away. She is right before my eyes.  She is the freest spirit I know, who revels in the things that bring her pleasure, who really lives in her every moment.  She has no artifice; she is real.

    I'm not sure she'd want to fight who she is.  I know I don't.

    I also know adults with autism, and they are proud of who they are, and the unique contribution they bring to the world. I wouldn't dream of telling them they were diseased. But I also know that I have only experienced parenting a child who is verbal, who is considered to be "high-functioning." And for all her differences and difficulties, she really has less of a disability.  I know there are many parents who are living a battle.  They have never heard their child speak, and witness only aggression and injurious behaviors.  That is their autism.  They would do anything to take away all the barriers to their child's ability.  That is their fight, and they are right to fight it.

    Don't get me wrong, there are many things I would like to fight.  Pudding's anxiety. Her difficulty with language.  Her daily struggles with her senses. But I find that when I get into a fighting stance against those things, it is Pudding who backs away. She needs to be coaxed and comforted to move forward.

    My fight is about accepting that I can't do everything for her.  She will struggle, and I will have to witness it.

    My fight is about getting her to the point where she could go to this very DIY store, or any other place that overwhelms her.  Or work to get those places to adapt for her.

    My fight is about ensuring my girl is included: in school, the wider community, or in a magazine.  It is through advocacy where our punches seem to hit the hardest.

    My fight is accepting that our lives are different from the way I thought they would be.  It is acceptance, not an act of violence: submission that is gentle and tough at the same time, and perhaps the hardest fight of all.

    My fight might not be the same as another mother's, but we still fight together, and our fight will always begin with awareness.

    I smiled at the assistant.
    "I'm buying the light for awareness.  My fight is for understanding and acceptance."

    Tuesday, April 19, 2011

    Mother of A Child With Autism

    Amy Spurway

    I am many things. I’ve got lots of labels. Mother. Writer. Wife. Gen Xer. Self-obsessed panic-prone neurotic with duck feet. But today, the one that is bouncing around my brain like a four-year old with a face full of neon blue icing from a Little Mermaid birthday cake is “Mother of a Child With Autism.” Maybe it’s because April is Autism Awareness month. Of which I am all too aware, thank you very much. Or maybe it’s because I spent the better part of last evening at a mom-blogger workshop talking to another woman with an autistic kid. Or maybe it’s because I spent 20 minutes this morning standing in the school hallway with my daughter Roo’s kindergarten teacher and Special Needs Assistant, discussing her refusal to follow instructions, and her “violent outburst.” Or maybe it’s because it’s just my reality, my most significant label. I am the Mother of A Child With Autism.

    But what does that even mean, to actually be the Mother Of A Child With Autism? That depends. Depends on you, depends on your kid, depends on the day, the moment, the position of the moon in relation to Neptune's wind for all I know. Right now, for me, it means that we can’t go to a movie theatre because the ambient noise and sensory overload might make Roo go ballistic. It means that I expect her to eat sand and playdoh whenever it’s in reach, even though she is almost five. It means I know how to execute “the hold” that keeps her from hurting herself or someone else when her meltdowns get out of control. It means playdates aren’t really an option. It means I am a pro at deciphering her echolalia, the repeated lines from TV shows she uses to represent emotions she can’t otherwise express. It means I can do the Wilbarger Protocol with my eyes closed. It means that I actually know what the Wilbarger Protocol is.

    But for someone else, being the Mother of a Child with Autism might mean something totally different. If you know one kid with autism, then ... well ... you know one kid with autism. And that’s it. The same goes for us Autism Mothers. We’re like snowflakes. Some of us are fun and sloppy and unexpected, and some of us are sparkling and icy and driven, and sometimes we change in mid-air. Made of the same stuff, each falling to earth on a trajectory we can’t control. No two exactly alike.

    Human beings, even the non-autistic ones, like predictability, patterns, and for everyone and everything to fit into neat little clearly labeled boxes. And therein lies the problem. Even though I call myself the Mother of a Child With Autism, applying the label does not make me or my family any easier to understand, or to define. I’m not a tragic hero-mom who sacrifices herself and devotes her life to battling all things Autistic, desperate for a cause and a cure. And I’m not an over-anxious hover-mother who spent too much time reading shit on the Internet and not enough time playing with my kid. I didn’t push doctors to pathologize my kid’s brattiness so I could play martyr or victim. I'm not a grieving wreck or a blindly blissful neurodiversity cheerleader. But I’m sure I’ve been pegged as each of these things, and squished into the compartment of every other phony archetype in the minds of people who only hear that I’m a Mother of a Child With Autism, who can’t grasp the complexity of the situation, who can’t see the many shades of grey that inhabit the space between black and white.

    Being the Mother of a Child With Autism is hard. Some days, my heart breaks a dozen times before breakfast. Some days I get bitten and scratched and screamed at. I go weeks and months without the spontaneous hugs or an 'I love you mommy's that other mothers take for granted. But I don’t feel sorry for myself or my family, and I don’t think my child needs to be “fixed” because she is not broken. She needs a different level of support and understanding from me and from the rest of the world, but she is who she is – weird and wild and wonderful – and that has played a role in making me who I am. The mother I am. I am stronger, tougher, more determined as a result. But I am also more patient, more flexible, more compassionate, and more grateful for the little things than I ever could have imagined.

    I am, among many things, the Mother of a Child With Autism. And although the average person might nod knowingly when they hear that because they saw an episode of Parenthood or Doctor Oz, no one except me really knows what that means to me and my life.

    Whatever. It’s just another label. And as the Mother of a Child with Autism I've learned something very important about labels: It is just as useless and irritating to stitch them on people as it is to stitch them on clothes. Sometimes it's better to rip them off before they drive you nuts.


    A version of this essay originally appeared on Amy's now defunct blog, Domestic Blister.

    Monday, April 18, 2011

    Little Songbird

    Kris Robin

    Today we went by the dress store to pick up my daughter Emily’s pageant dress. I had chosen a dress shop close to where we lived, though to call it a shop would have been a bit of a stretch. It was a storage building attached to the side of a trailer. Off to the side stood the Woodrow Wedding Chapel – yet another storage building where happy couples could walk down the aisle after renting a wedding dress. An orange tabby was asleep on a bale of hay by the front door. A little girl’s white dress was draped over the bushes in the sunshine. It really didn’t look like the place to rent a pageant dress, but I had been lucky enough to find one for Emily there last week. With shoes, however, I had no luck anywhere.

    I had to wonder at my rotten luck in not being able to find any shoes within a thirty mile radius of where we lived. Too big, too small, wrong color, nothing was working out for me this week. I really didn’t have time to look, especially with all three kids in tow, so I reluctantly had called the shop back earlier to see if they had shoes for sale. Having been assured they did, we drove the twenty miles over back roads and potholes to the Woodrow Wedding Chapel and Dress Rental. I was having a bit of a pity party as I drove. My oldest daughter, Sarah, was having some very trying behaviors. Sarah has autism and some days are worse than others. But I couldn’t let Sarah’s behaviors interfere with Emily’s pageant. Still, I was wishing I had taken something for my headache as I listened to my youngest, Sophie, enthusiastically sing Old McDonald from her booster seat. Repeatedly.

    As we walked inside, I could tell that Debra (owner of the Woodrow Wedding Chapel) was neck deep in the rush of altering dresses before the pageants of this weekend. Sequins and beads were scattered on the table near a floral curtained room that served as a changing area. Rows of dresses with pieces of paper carefully pinned to them were hung across the ceiling, clothesline style, waiting to be picked up. Yet more racks of dresses, unrented, filled the rest of the building with bright sparkling fabrics.

    Debra looked up at us and smiled tiredly, gesturing to the shoes in the corner. “Start looking for a size that fits, darlin’, and we’ll see what we can do about coloring 'em.” She started a bit when she saw my oldest, Sarah, rocking side to side, hands over her ears and eyes wide at all the bright colors and sparkling beads.  I was quick to assure Debra, “She has autism but I’m going to hold tight to her so she won’t touch anything.” Knowing my luck, I figured Sarah was good for about a thousand dollars of damage if she darted away and grabbed something.

    Debra came over to us and knelt down beside her and said, “Hello sweetheart, do you like the pretty dresses?”

    I replied, “Sarah is non-verbal, she doesn’t talk.” And then, as Sarah began to sing Achy Breaky Heart, I added, “She does, however, love to sing.”

    Debra touched Sarah lightly on the shoulder and said, “She’s a little songbird, ain’t she?” I agreed and turned my attention to Emily, to veto the high heeled glass slippers she was trying on. When I glanced back my heart almost stopped. Debra had taken two of the dresses off the hangers and handed them to Sarah to play with. Considering that the dresses rented for $75 up and most had a value of several hundred dollars, I thought it prudent to intervene.

    “Please don’t let her play with those,” I told Debra, “she’ll tear them up and I can promise you that I can’t afford to replace them.”

    Debra looked up from the rhinestone butterfly she was showing Sarah. “I am the oldest of ten children,” she told me. “My youngest sister wasn’t expected to live past one year. They told my mother to put her somewhere but she brought her home. She stayed with us, and she was sixteen years old before she passed. She never talked but she loved to sing. And look at sparkly things. And rock. We musta wore out fourteen rockin' chairs in those sixteen years. She was so happy.”

    I didn’t know what to say, but I told her what I personally believe to be true. “People are the way that God meant for them to be. There are worse things in life than living your life happy and content, surrounded by those who love and care for you.” I could tell she agreed.

    She asked me if I minded if she brought her mother in to meet Sarah, and went next door to the trailer. A few minutes later an older lady came in and her eyes locked onto Sarah and softened. She knelt down beside her, touched her on the head, saying, “Hello sweetheart.” Sarah didn’t reply but started humming Rockin Robin. The lady smiled and turned to me. “Do you mind if I sit near her for a minute?”

    Of course I didn’t mind but had to watch. It is so interesting to see how people interact with Sarah. Regardless of how well they know her, there is usually a hesitancy or a pause when they get close, as if they worry she will dart away or push or do any of the unexpected things that she is known to do. But this lady melted next to her as if she’d known her all her life. She put both arms around her and pressed her face into Sarah’s hair, inhaling deeply. Any mother, anywhere would recognize this hug. She smiled into Sarah’s hair and whispered, “Little songbird, what a sweet girl you are!”

    Meanwhile Debra had gone to get her daughters to come meet Sarah. I could tell that the teenagers were a bit confused about the fuss being made, but they smiled politely and said hello to Sarah and the rest of us. Debra pulled down three more dresses and handed them to her Mother who showed them to Sarah. By now I had given up counting the dollars of damage that Sarah could do and indeed Sarah was running her fingers over beads and sequins, fabrics and stones. She would squeal with excitement every couple of minutes, prompting another hug and smiles of delight from Debra and her Mom.

    They tossed pink and purple pageant dresses into the air with abandon laughing as they floated down. They played peek-a-boo with a turquoise and silver dress with more layers than I could count. A stone studded blue formal was spread on the floor for them to run their hands over. Crushed brown velvet rubbed across their cheeks, arms and hands. I closed my eyes to the potential damage that could occur and instead looked at the absolute joy emanating from the two ladies whose sole attention was focused on Sarah.

    I was suddenly glad that I hadn’t found the shoes I needed somewhere else. My day, which had been quite crappy, had become a bit more beautiful. When it came time to leave, Debra’s Mom walked us out, past the bale of hay with the sleeping tabby and hugged Sarah one last time. “Bye little songbird,” she whispered, “come back and visit me again.”

    Friday, April 15, 2011

    Be Different: An Interview with John Elder Robison

    John Elder Robison is as fascinating as you might imagine; bright, articulate and thoughtful. His first book Look Me in the Eye: My Life with Asperger's became one of the most popular works to introduce people to autism. He thought he would write a second book because he realized that people had such a strong desire for insight. Be Different: Adventures of a Free-Range Aspergian With Practical Advice for Aspergians, Misfits, Families & Teachers is filled with stories he says “show how every component of autism that you find in the DSM manual affects my life. Some of those things help me to be successful, and some of those things hold me back, so it’s a mix, all those different traits.”

    Your new book is Be Different, then you use the term "Free Range" in the subtitle. Are you describing a time before diagnosis?

    I grew up without being constrained by any kind of diagnostic label. On the one hand, it’s good that kids get diagnosed and they get special assistance in school. But for me, it was also good that I did get held to the same standard as everyone else, and I had to just make my way in the world.

    Did you feel a sense of relief when you got the diagnosis?

    Well, it was tremendously liberating and empowering because people had called me names, and I had always perceived myself as defective ... I didn’t know what was different about me but I could see that there was something the matter with me because other people had all these social success and I didn’t.

    So for me to read about Asperger’s and to realize that I wasn’t defective and I was a part of this community ... I had a poor self-image all these years and then to take the knowledge of how Asperger people are different than other people, gave me insights for the first time, as to how I might change my behavior to make myself more acceptable to other people. And it worked, and that was a really big deal for me.

    You say, “I am a person with Asperger’s, or you are an Aspergian or an Aspie. I say my son has autism, or he is autistic, interchangeably, but is there a way you think we should talk about it? Is that language important to you?

    I think you have to sort of careful of that when you say “He has autism." Careful that people don’t get the impression that it’s like saying that he’s caught the flu or that it’s a temporary condition that is going to go away. Because, of course it isn’t going to go away. It’s a state of being more than a disease you have.

    Like when people say my son is “so much better” from the last time they saw him?

    Yes, because he’s really developing. Most people with any kind of autism learn coping strategies that work progressively better as we get older. So you will always have the same autistic differences in your brain that you were born with, but people will emerge from disability to varying degrees. Some people will always have a significant degree of disability and will require services, whereas other people who were pretty disabled as children might not be disabled at all as adults. I’m an example of that.

    The label autism describes you, an accomplished author, family man, and entrepreneur; and also my son who is non-verbal and has very few self-help skills -- and all those in between. How do parents like me keep looking for answers, solutions, and ways to help our children without offending adults with autism? How does a parent occasionally grieve a missed milestone because our child is disabled without somehow implying that your part of the spectrum is defective and not just different?

    I think that the really big issue in the world of autism comes down to one of the principal components of autism: our diminished ability to put ourselves in the other person’s shoes, or recognize other points of view as valid. So any person who is personally touched by autism is going to have a greater predisposition to think that autism for everyone is the way autism is for him. The result is that people who are highly verbal tend to think “Well, people in the autism world don’t need any kind of research or medical assistance, they just need society to accept us."

    And then they make the leap to the idea that anyone who does do medical research is just engaged in trying to get rid of us; which is not true. Then the people who have kids with pretty severe disability they tend to dismiss those with less visible disabilities.

    When the truth is that both groups of people need support and services?

    One of the leading causes of death in those people who can’t care for themselves is neglect, misadventure, and accident; those are all preventable deaths. The CDC is advocating a diagnostic code for people who wander as a result of severe disability so we can get services to keep those people from going out in the street and getting killed by cars. Now there’s opposition to a notion like that by people who think that it would just be a tool to restrain an individual who just don’t do what others say. But it’s really a concept to address a significant cause of death.

    And then if we look at those people who are supposedly high-functioning and verbal, they’re the ones who commit suicide. They’re the really bright kids, who couldn’t seem to fit in, and no one understands why they would do it.

    The truth is that autism can be deadly at the two extremes, and I hope that people recognize that both ends of the spectrum are equally deserving of services -- but the services they need are very different.

    I was fascinated by your appearance in the Discovery Channel's Ingenious Minds documentary. Tell us about your experience with Repetitive Transcranial Magnetic Stimulation, or RTMS. Were you scared?

    It isn’t scary at all. They did a number of stimulations where they delivered electromagnetic energy to different small areas of my brain in an attempt to temporarily rebalance those areas, and see if the changed balance will allow me to see non-verbal signals from other people more effectively. We did twenty stimulations and of those twenty, three had powerful transformative effects.

    Was the effect lasting?

    The effects of the stimulation were temporary, but it’s as if you grow up color blind and all you see is the world in black and white. And all your life people have been saying to you, “Her shirt is red.” and, “He’s got a green coat on.” And you know those two people look exactly the same in your black and white vision, so when everyone keeps saying “that’s red” or “that’s green”, eventually it just makes you mad.

    And when you start to become angry hearing that, it’s what you might call a maladaptive behavior because you are using the incorrect evidence of your eyes to draw a wrong conclusion.

    Then, imagine you go into a lab, they do something and it flips a switch in your mind. And you walk out of that lab and you can see red and blue, and all of a sudden you know that what you been told all your life was true and that it was your perception that was the lie.< And that ability fades away, and you go back to seeing in black and white but your world is changed forever because you know that the configuration exists in your mind to see color, and you know color is the true story not black and white. That’s sort of what’s happened to me. The stimulation had an effect that was temporary, but it showed me that my mind has the ability to perceive these things. I’m teaching myself to do it. You might say that I’m willing myself to use those pathways. The TMS didn’t make new paths but illuminated what was there.  

    Do you visualize it like that?

    I sort of visualize like that and people say that I have this extraordinary ability to reflect upon things, so it’s possible that it allows me to get a value from TMS that someone that doesn’t have that self-reflective power might miss.

    Do you recommend it to perhaps the other end of the spectrum?

    I don’t recommend it for anyone right now because it’s not a therapy, it’s scientific research, which I believe will ultimately lead to therapies. What the TMS is showing, is that the wiring in the brain to “fix” some of these components of disability may already exist. For example, your son may already have wiring in his brain to talk, so if we have the ability to suppress what was holding that back we might be able to then give him more ordinary power of speech. That’s potentially a very powerful thing, and that’s the ultimate goal of this research -- but they have a long way to go before it moves from experimentation to therapy.

    The word “fix”, or “cure” can be a little dangerous to use, no matter who you’re talking to. Do you think there might be a backlash? Or would it be hard to deny that this is a positive benefit?

    Backlash? I am fully aware of the difference between what someone might call a cure for autism, which in my opinion, is not a realistic thing to think about. If you have a difference in your brain, and you grow up with that difference, your brain has wired itself in the image of what it has experienced. You can’t just take a part of that out. But we could change your son's life if we had a tool that could help him talk. It doesn’t mean we cure autism, we would just be helping your son to talk, and he would have a better quality of life.< When you look at this as having the goal to develop tools and therapies to remediate or fix certain components of disability, I can’t imagine how any reasonable person would be opposed to that. If we develop a tool that helps an autistic child to talk. If you’re a person with autism who does speak, than that tool is irrelevant to you, but it doesn’t mean you shouldn’t be able to recognize the enormous value it has.  

    One of the many quotable phrases from Be Different is “Competence excuses strangeness.” Do you think employers provide enough accommodation for people who think differently?

    I think one thing we can do is have employment screening that looks at alternatives to traditional college credentials. For example, in the world of engineering I have demonstrated by my accomplishments that I would be a good person to hire in a lot of technical companies, and I don’t have a diploma. One thing that would be a major step would be for employers to become more open to accepting alternate credentials from potential employees in the same way that colleges give life experience towards a degree.

    The screening process doesn’t really catch those people now?

    There are some technology companies who recognize this. I hear, “A person like you would be an ideal employee. How would you have gotten in the door if you were twenty-five today?" They recognize that their screening tools are potentially screening out good workers. There’s an awareness. The next step would be a desire to change.

    Thirty years ago you couldn’t demonstrate how you could make a contribution to a company if you didn’t already have access to that company’s proprietary software, but we’re moving towards an “Open Source” world. Right now a sixteen year old who is brilliant at software but failing at school can go out there and code, and can bring himself to the attention of an engineering team at a company like Google.

    What other advice would you give Aspergian teens about relationships?

    My advice in Be Different is to make yourself choosable. For a guy to go out and on the offensive trying to select people and befriending them, that requires a level of social understanding that we may not have. It’s much easier to choose to just act in ways that makes us choosable, instead of ways that makes us repellent.

    Sounds like good advice for most people.

    If I am polite, open doors, and am considerate, people will talk to me. People will appreciate me and I will not have a bad outcome. This is perfectly typified in the movie Being There with Peter Sellers: if you are just quiet and polite, a lot of opportunity will come your way.

    So are you saying to squash your personality?

    People ask if I am proposing that we become false, and I’m not saying that. If someone walks into the room and you think she looks pretty, then by all means tell her, she’ll be happy. But if you think she looks ridiculous in that striped shirt, don’t say that. You need to teach yourself which comments will get a good response and which will generate a bad response and you need to think before you say things. I’m not saying make up a lie, or tell her she looks beautiful when she doesn't.

    So it’s almost just using a filter? You decide which observations you share?

    Yes. It’s fine to have those thoughts, you just need to learn which thoughts you can articulate to a wider audience without bringing disaster upon yourself.

    It’s a logic filter, and these are things that do not depend upon subtle abilities to interact with or read people. It is a rule- and logic-based system. Before I make a comment, does it pass this test? And if the answer is “no,” I don’t say it. That’s not being untrue; that’s learning how to conduct yourself in a way that will work. Sometimes by keeping your mouth shut, you stay friends with that person, and then you have a chance for positive interaction in the future. If you alienate the person, you’ve failed, because your future opportunity for interaction came to an end.

    Ideally, you’re only being neutral or positive. I think that it’s a significant piece of advice for anyone, but especially appropriate for people on the spectrum because we don’t naturally possess a filter. Nyptical people very often lie and say “oh don’t you look sweet today.” when they don't mean it. That’s false behavior in order to take advantage of someone for something. I don’t advocate that at all.

    It’s Autism Awareness Month. What does that mean to you? If there was one thing you want people to know about autism, or take away, or feel, what would it be?

    I don’t have a “one thing” I want people to know. No one sentence answer.

    Autism Awareness Month is sort of like Black History Month I suppose, where people who would not otherwise have any connection are made aware that the topic exists. And I think for many, many people who are not connected to autism it’s not something they think about at all. So if by having Autism Awareness Month we make some people aware in some way, then that’s a constructive and good thing.

    We want to make people aware. Autism is an important part of our culture. We want people to find out more. In the last decade we have created a general awareness, so that if you just stopped someone on the street and asked, “What is autism?” most people could give you some answer that was sort of close to correct. That’s a major accomplishment.


    Mr. Robison is currently on a book tour. Those of you in the SF Bay area can see him:
    April 18, 2011, in Sebastapol at Copperfield's 138 North Main Street at 7pm. Call Copperfields at 707-823-8991 for more information.

    April 19, 2011, in San Francisco at 7pm for a free public event at Books Inc.- Opera Plaza in San Francisco. For more information, contact Margie Scott-Tucker 415.643.3400 x11 

    For more book tour information, please see John's blog