And you didn’t even notice/When the sky turned blue/And you couldn’t tell the difference/Between me and you

Last night after the sun went down, multiple buildings at the University of Rochester, down the street from my house, were bathed in blue light. Buildings across the country, across the globe, followed suit. Strategically placed bulbs behind Niagara Falls illuminated the cascading water. Everything lit up, blue.


April is widely acknowledged as Autism Awareness Month. The UN designated April 2nd as World Autism Awareness Day back in 2008, and Autism Speaks began their Light It Up Blue campaign in 2010, urging people to dress in blue and put blue bulbs in their front porch lights, in an effort to spread awareness of how widespread autism is. For most people in the autism community in the US, World Autism Awareness Day and Light It Up Blue are inextricably linked, and both are clearly associated with Autism Speaks.


A year before the Light It Up Blue Campaign was inaugurated, Autism Speaks hired Alfonso Cuaron to direct a four minute long video called “I Am Autism”. Given that Cuaron was in the midst of an ugly divorce following his son’s diagnosis with autism, procuring his services to make a film about the effects autism can have on a family had somewhat predictable but no less distressing results.

Over ominous music and grainy home videos of children stimming or staring blankly into space, a chilling voice intones, “I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too… I know no color barrier, no religion, no morality… I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry…I am still winning, and you are scared. And you should be.”

And then the music modulates ever so slightly, to a major key, to a triumphant rebuttal. “And to autism I say: I am a father, a mother, a grandparent, a brother, a sister. We will spend every waking hour trying to weaken you…We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated…We speak the only language that matters: love for our children…You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak, we cannot hear them?…When you came for my child, you forgot: you came for me.”

The message of the video could not be clearer: autism is an insidious force that steals your children, and Autism Speaks is an organization that represents the parents fighting back. It’s a game of telephone — parents presume to speak on behalf of their children, and Autism Speaks presumes to speak for the parents. But given how much inevitably gets lost in translation in any given game of telephone…


…let’s be honest — Autism Speaks is really just speaking for parents. Their public relations campaigns promote the challenges faced by “warrior moms”. Light It Up Blue spreads awareness, yes. It spreads awareness of how much “autism parents” have to struggle. I have two autistic kids, so basically Autism Speaks is speaking for me. Um…thanks? I guess?


Autism Speaks was founded in 2005 by Bob and Suzanne Wright. Bob Wright was the chairman and CEO of NBC Universal when his grandson, Christian, was diagnosed with autism. With an essentially infinite rolodex of connections and gobs and gobs of cash, Wright must have found it unfathomable that this might be an unfixable situation. And because of those connections and that cash, Autism Speaks swiftly became the 800 pound gorilla of autism charities. (I mean, people in Buffalo bought a lot of Flutie Flakes, but let’s be honest, Doug Flutie was never going to be able to make the sort of dent that the head of one of the world’s largest entertainment monoliths could. He sure did make a great pass that one time, though, as I understand it.)


Autism Speaks was steering the ship, and the course was clear: wide-release, big name PR would bring in the donations, and the donations would fund research into the cause of and potential treatments for autism.

The Wrights’ daughter, Katie, was convinced of the then-still-vaguely-plausible theory that her son’s autism was caused by vaccinations, so a lot of money went in that direction at first. When no studies could find a connection, Autism Speaks officially repudiated any link to a possible danger from vaccines. In doing so, they caused a rift between Katie and her parents that has yet to heal. Katie now often writes for Age of Autism, the pre-eminent anti-vaccine blog, and is a vocal critic of the research Autism Speaks has chosen to fund.

Katie Wright and her pals in the anti-vaccine movement are far from the only critics of Autism Speaks, however. Because the louder Autism Speaks’ voice became, the more blue puzzle piece bumper stickers dotted the interstates, the more dollars got tacked on to the tail end of Toys R Us purchases…the more glaring a particular aspect of the organization became to those who were paying attention. Namely, there were no actual autistic people involved in any sort of leadership position at Autism Speaks.


Autism Speaks was eager to trumpet each new autism prevalence statistic that any study bore out, for the sake of their bottom line — one in 100, one in 66, possibly even 1 in 50 children in America would be diagnosed with an autism spectrum disorder. (Side note: As cited in an utterly execrable Washington Post op-ed yesterday by noted anti-vax “warrior mom” Kim Stagliano, MIT scientist and noted moron Stephanie Seneff believes that soon half of all children will be autistic if current trends continue — but she is indeed a noted moron whose limited grasp of statistical analysis and odd predilection for talking about subjects far outside her own field of expertise [which is robotics, not autism, for the record] makes me strongly doubt the wisdom of the university tenure system — and I’m the wife of a college professor!) But what Autism Speaks chronically neglected to disclose when doom-and-glooming about rising rates was that a great deal of that increase was clearly due to a broadening of the diagnostic criteria and a subsequent boom in the number of autistic people with the capacity, in whatever form, to speak for themselves. And when they began to speak, their voice was almost unanimousAutism Speaks does not speak for them.

This was problematic for Autism Speaks. So much of their program is built around PR that a bunch of adult autistics undermining their message could be truly damaging to their business model. When President Obama named Ari Ne’eman, the head of the Autistic Self- Advocacy Network, to an advisory position in his administration, what had previously been a relatively quiet rumble mainly confined to particularly dusty and nerdy corners of the internet became a clear public dissent. And what resulted was truly unseemly. Autism Speaks was happy to use stats that included so-called “high functioning” autistics to fuel their fundraising efforts, but as soon as those people began to talk back, they were told they were too high-functioning to really count.

But that’s because Autism Speaks really has only ever spoken for parents to begin with. The only autism that is REAL autism, remember, is the kind that needs to be fought ceaselessly with “technology and voodoo and prayer and herbs and genetic studies and growing awareness.” I don’t know how voodoo and prayer fit into their accounting scheme, but I assume some of the technology in question might be the electroshock behavior modification practiced at the Judge Rotenberg Center, an organization that Autism Speaks featured at a resource fair during their national policy and action summit in 2013. By herbs they’re almost certainly talking about the types of biomedical treatments Katie Wright swears by — they may have disavowed any anti-vaccine stance, but they still fund plenty of studies of complementary and alternative medicine, much of which is harmless or even legitimately beneficial but when taken to extremes can basically bankrupt desperate parents pumping their children full of B12 injections and high-dose anti-parasite medications and synthetic castrating hormones and even bleach enemas. Because autism is winning, and parents should be scared. What horrifies many adult autistics most is the newer focus on genetic studies. Personally, as a person with multiple autistic kids I find genetic studies to be of interest on a “The More You Know!” level, but to people who view autism as an integral, inseparable aspect of their humanity, this all sounds like fancy code for eugenics. If there was a genetic test for autism, the way there is for Down syndrome, would most expectant parents abort?

That’s where the last part of Autism Speak’ battle cry becomes vitally important — growing awareness. That’s what this month is supposedly about, what Light It Up Blue is meant to accomplish: making the public aware of autism. But if Autism Speaks is the one defining what people need to be aware of, is that the sort of awareness we really want to spread? Are we spreading awareness of how hard “autism parents” have it, how much we have to cope with that other parents don’t, how terrible autism has made our lives? That seems to be the message of awareness they presented in “I Am Autism” and the message Suzanne Wright voiced in her “call to action” in the fall of 2013 where she once again described autistic children as “missing” and their families as “not living. They are existing. Breathing — yes. Eating — yes. Sleeping — maybe…Life lived moment-to-moment. In despair.”


I don’t live in despair.


No, really, I don’t.

I can’t speak for the parents of children who need more support than my kids, or who have other issues that seem woven inextricably into their autism lattice like seizures or gastrointestinal issues or violence or allergies. But for me, with two kids on the spectrum — my life is tough. But THEIR lives are tougher. This should be awareness of THEM, not of ME. I want to raise awareness about the ways they struggle — but also the ways they succeed and the ways they excel. I want to raise awareness of the fact that their lives have value, whether they have fluent spoken language or not. They shouldn’t have to speak to be heard, and until Autism Speaks does a better job of listening, they should stop hogging the megaphone.


The hard thing is, Autism Speaks DOES do some work that truly directly benefits families affected by autism and autistic people themselves. Whenever an anti-Autism Speaks thread starts in any of the autism-related internet forums I frequent, inevitably people chime in with, “But my kid got an iPad because of Autism Speaks” or “our local organization got a grant from Autism Speaks that has allowed us to create such-and-such fantastic service for adults on the spectrum.” Awesome! I myself have found some of the text resources on their website to be useful, including one about medications that was developed by a nurse practitioner at our local university hospital. But SUCH a small percentage of their HUGE income goes to those sorts of efforts, and so much goes towards questionable research and unfortunate rhetoric that I simply cannot stand behind the organization and will not Light It Up Blue until they make some large systematic changes in their mission statement.

One of my very favorite bloggers, Jess Wilson of A Diary of a Mom, used to actively fundraise for Autism Speaks, participate publicly in their walks, function as one of the largest parental voices for them in the Boston area. But then something happened, an encounter with Suzanne Wright that made her head spin, and soon she could no longer stand behind the organization.

Someone walks over to our step to say hello. She bends at the waist, looming over Brooke.

Brooke doesn’t look up. She doesn’t stop stripping her stick.

Dig. Pull. Dig. Pull.

Our visitor reaches out a hand and cups it below Brooke’s chin.

I freeze. Oh God.

She uses the hand to pull Brooke’s head up by the jaw.

A thin line of panic starts somewhere deep. I know that Brooke is going to scream. 5,4,3,2 …

She does scream, but not in the way that I expect.

“I HATE BEING TOUCHED!!” she shouts.

I am flabbergasted.

Words. Self-awareness. Communication. Self-advocacy.

I know the sentence will need to be reformatted. But I am drenched in pride.

I turn to Brooke. “Great job telling us how you feel, Brooke. Really great job.” I hope that my words send a message to both of them. I stand with my girl.

Our visitor is undaunted.

“I just want to see that beautiful face,” she says. “Lift up for me.”

I am stymied by etiquette. By deference to our host. By generational difference. By convention.

Brooke is not.

She lifts her head as instructed. And growls.


A woman with so little respect for the physical autonomy of an autistic child, let alone so little regard for the sensory sensitivities common to autistic people, simply SHOULD NOT be dictating the way we raise awareness about autism in this country. And she clearly doesn’t need to act as anyone’s voice. If we bothered to listen, we would find that autistic people truly can speak for themselves, even if it’s just lifting their head and growling. As a parent, I want to open doors for my children, and I will fight to get them the supports they need to succeed in whatever will make them happy. But I’m not a warrior. My kids are warriors, and they’re not fighting against autism, they’re fighting against a world that is unforgiving of any deviation form the norm. I don’t want the world to be aware my children exist. I want the world to accept my children as they are.


Awareness can be the first step, certainly, although not the sort of awareness Autism Speaks spreads. But acceptance and understanding is what we need to shoot for. And sadly, that’s not what the world’s largest autism charity is all about.

There were no lights at my house last night. Autism has not robbed me of my children or my dreams. They were in bed beside me, dreaming dreams of their own.


“‘I feel all sleepy,’ she said.”

I didn’t want to write this post. And there are a couple of reasons for that.

First of all is the obvious, which is that I’m only writing it because there is a large scale outbreak of a preventable childhood disease that was on the brink of total extinction in this country fifteen years ago. I would prefer that was not the case, and if it was not the case, I wouldn’t feel the need to write this post. Second is more personal, which is that I know some people who do not vaccinate. I know people who are passionate about not vaccinating. I actually know at least one person who believes their child developed autism as a result of vaccinations. I like all of these people. I do not want to offend or upset those people. Some of you who knew me when I was younger and more volatile might not believe this, but I really am a pretty “live and let live” kind of person. My blood pressure benefits from taking a very Wooderson-style approach to life. For the most part, I do not give a shit about the choices people make with regards to their personal lives. You do you, man. Just keep L-I-V-I-N. Alright, alright, alright.


So let’s not look at it that way. I’m not writing this to try and sway anyone who has already made up their minds. That’s probably not going to happen. People who are committed to the idea that vaccination is harmful, is a scam, is a tragedy…those people aren’t going to change their minds. So, fine. Instead, I’m writing this for two other groups of people. I’m writing this for people who haven’t made up their minds. I’m writing this for people who don’t have kids yet, so they haven’t been bombarded from information on both sides. I’m writing this for people who have a natural skepticism towards anything that comes from Big PHRMA (I totally get that!) or who don’t like the idea of the government forcing you to make certain choices about your body (please refer back to my Wendy Davis post for confirmation that I totally get that, too!). I’m writing for people who just aren’t sure, who don’t know what to think.

But I’m mostly writing it for people who, like myself, are passionate about vaccination in this country, for whatever reason. People who want to wade into the muck of the internet to shout loudly at stubborn douchebags, or, hopefully more likely, to calmly rebut information being disseminated by the antivax crowd. Because they have a lot to say, and I would like to give you some things you can say back. You can’t go into a knife fight armed with a spatula, and you can’t argue with antivaxxers without knowing who they are, how they think, and what they’re going to throw at you.


The backlash to inoculation began basically five minutes after someone thought up the idea of inoculation. Jezebel has actually recently published a great post about the older history of the topic, including a lot of stuff I didn’t know. My knowledge of and interest in the subject doesn’t go back quite that far. But I’m pretty well versed in the last thirty years of the anti-vaccine movement. I think the best way to approach this is to write out a Who’s Who, because that’s the fastest way for you to check sources — if you see any of the following names, be skeptical, because these are not people speaking from a position of neutrality. And any Who’s Who of the antivaccine movement has to start with…no, not who you’re all thinking of. Honestly, she’s almost a footnote. No, not him either. We’ll get to them, don’t worry. Instead, we’ll start off delicately, with the grande dame of last 20th century antivax activism. Her name is Barbara Loe Fisher.

•Barbara Loe Fisher: Fisher founded the National Vaccine Information Center (NVIC) after her son had a seizure “within hours of his fourth DPT shot…when he was two and a half years old.” This was the old whole-cell pertussis shot, which legitimately did have a worse record of adverse reactions than the current acellular pertussis (DTaP) shot which children now receive, although those adverse reactions were still rare. Fisher wrote a book in 1985 called DTP: A Shot In The Dark. According to Fisher, she saw linguistic regression in her son immediately following the seizure, as well as “chronic infections, constant diarrhea, new allergies, failure to thrive,” and he ended up with “multiple learning disabilities and attention deficit disorder”. Another website I found claimed he has ADHD, asthma, dyslexia, and diabetes. As far as I can tell, no doctor has ever decisively linked any of those things to the vaccine, and I don’t believe she ever took a case to the Vaccine Court. Her son is now a videographer and competitive power lifter, so apparently he started thriving at some point.

OK, herein lies the inherent problem with criticizing many of the people in the antivaccine movement — I don’t want to talk shit on people’s firsthand experience with their child. What Barbara Loe Fisher went through with her son was certainly extremely difficult and emotionally trying. She believes wholeheartedly that her son’s learning disabilities and autoimmune issues were caused by a vaccine reaction. It is impossible to disprove that, in any single individual case. I’m actually shocked she never took her case to the vaccine court as far as I can tell, because I would guess “convulsion following DTP” would be considered a table injury and pretty quickly compensated just to get it off the docket. (We’ll talk more about “table injuries” in my next post, and just as a heads up, IANAL.) But instead of focusing her attention solely on her son, she became an activist. And that’s where I become critical, because now you’re having an impact on public health. But as a rule, I find it harder to pile on to parents, because I am a parent, and I understand how terrifying it is when your child is sick and how frustrating it can be to not know the cause.

I do not have a similar problem piling on to this next asshole.

•Andrew Wakefield: Hoo boy, THIS GUY. I will try to limit my discussion of Andrew Wakefield to absolutely necessary information and not just shout obscenities. In 1998, Wakefield was the lead author on a paper in The Lancet, generally considered one of the foremost medical journals in the world, that asserted a link between the MMR (measles, mumps, and rubella) vaccine and what he later dubbed “autistic enterocolitis”.


Basically, to boil it down, he suggested to the world that autism was likely caused by the MMR vaccine and was really developmental regression caused by inflammatory bowel disease.

People went batshit. Vaccination rates in England, where Wakefield is from and The Lancet is published, dropped precipitously! Congressional hearings were held! (We’ll also get to those in a later post.) Suddenly, even though we were talking about a totally different vaccine, Barbara Loe Fisher’s crusade was vindicated!

And then, a guy named Brian Deer looked a little closer at this study. It was problematic. I use that word because it is a hilarious understatement.


To begin with, the article was a case study that used only 12 children, all self-selected, hardly a large scale study with a random sampling of autistic kids. So the scientific impact of the paper, based on the evidence presented by the paper itself, by all rights should have been very limited. But wait, it gets more interesting.


Two years before the paper was published, Wakefield was hired by a lawyer named Richard Barr who wanted to start a class action lawsuit against the pharmaceutical companies that manufactured the MMR vaccine. Not only that, but Barr paid Wakefield out of the UK LEGAL AID FUND, and Wakefield made around $750K, not including expenses, which was laundered through his wife’s personal company! Oh! Oh! AAAAAND! A year before the paper was published, Wakefield secretly filed for a patent for a single measles vaccine! So, here we go, on top of the grant he personally received from the Legal Aid Board to do the research, he also made $750K (also public money, meant to help the poor and disabled) from a lawyer who wanted to sue the pharmaceutical companies, AND he stood to financially profit from his own proposed vaccine if he could cast doubt on the safety of the triple shot. You got that? That’s Wakefield’s financial shadiness.


BUT THE STUDY ITSELF WAS EVEN BULLSHIT. Most of the children were referred by the lawyer who wanted to sue Merck, their medical histories were repeatedly changed and falsified, Wakefield gave the kids spinal taps and colonoscopies without getting approval from the Royal Free Hospital’s ethics board, and later tests showed that the intestinal biopsy results stated in the study were incorrect.


Oh, and also he got his study controls by paying the parents of kids at his son’s birthday party five quid each for their blood. Jesus christ, THIS ASSHOLE.


So, you know, he’s been stripped of his medical license. The paper’s been retracted. The dude is dodgy in every single way shape and form and anyone with an ounce of sense knows that. But he is still actively celebrated by the antivaccine community. He is their martyr. He founded an organization in Texas called Happiness House where desperate parents could take their kids to be tested and treated for so-called autistic enterocolitis, and more shady research could be done. After he lost his license, Happiness House changed its name and Wakefield and his cohort disappeared from their research masthead. Wakefield now mostly hangs around conferences lapping up speaking fees and doing propaganda videos for various antivax media outlets.


It’s worth also mentioning his buddy Arthur Krigsman, who basically has built an entire career around diagnosing autistic enterocolitis. Storytime: About a year and a half ago, a woman named Dorothy Spourdalakis killed her son, Alex, who had been hospitalized for apparent gastrointestinal illness and who was non-verbal and autistic. Wakefield showed up at his bedside in the hospital to make a short movie (with the help of Polly Tommey from the Autism Media Network, and disseminated with the help of then-CBS reporter Sheryl Attkisson, who can reliably be counted on to take the conspiracy theory stance on basically everything and who also believes that Obama bugged her laptop because Benghazi)


…about how the hospital was treating this boy horribly and refusing to entertain the notion of using any alternative protocols. Wakefield and Tommey’s video, which I am not going to link to because it is too upsetting, revealed that an independently obtained gastroenterologist had been flown into Chicago and discovered that Alex was almost certainly suffering from measles enterocolitis. Guess who that gastroenterologist was? Hi, Arthur Krigsman! Wakefield has recently put out a documentary called “Who Killed Alex Spourdalakis?” The answer is apparently NOT “his mother and godmother who tried to overdose him and then stabbed him to death when the overdose failed.” No, according to Andrew Wakefield, Alex Spourdalakis was killed by mainstream medicine, Big PHRMA, and everyone who had refused to listen to him, Saint Andrew Wakefield, who has only ever had the needs of the children at heart.


I hate Andrew Wakefield, and you should too.

•Jenny McCarthy: Jenny falls into the same category as Barbara Loe Fisher for me, to a certain extent, in that I don’t doubt her sincere belief that her child’s medical challenges were due to vaccines. But man alive, did throwing her hat into the antivax ring during that Oprah special ever revitalize her career in a creepy way.


Jenny has written three books about autism and vaccines since her son Evan was diagnosed with autism. Her first book deals specifically with Evan’s story. According to Jenny, after Evan’s MMR he started showing behavioral and language regression, bloating, eczema, and then eventually seizures. She tried every biomedical treatment under the sun and now, as a preteen, Evan barely shows any signs of autism and doesn’t qualify for special ed services through the school district. Evan also recently called the cops on Jenny for texting while driving. I like Evan. He sounds like my kind of kid.

Jenny’s second book is basically a compilation of stories by other “autism moms” who subscribe to a biomedical approach to treating autism. (One of the moms in the book is Katie Wright, who believes her son Christian developed autism after his MMR shot. Katie Wright’s parents subsequently founded Autism Speaks, which I don’t even have the time to get into here other than to say that Autism Speaks does a lot of great stuff and a lot of messed up stuff and her dad Bob Wright seems to have his head generally in the right place and her mom Suzanne Wright seems to be a horrible narcissist and neither of them believe Katie’s “mommy instinct” about vaccinations is correct and it has been incredibly damaging to their family and I am sorry for Christian and I hope he’s doing OK. Would you like to add one dollar to your Toys R Us purchase today to Light It Up Blue with Autism Speaks?) They tell their stories and then Jenny butts in with parenthetical or italicized asides, because she’s your cool funny friend with big boobs who likes to fart and also talk to you about chelation. This book is not very good.


Jenny’s third book is nearly unreadable. I’ve tried a few times but I have to jump around because I just keep going “urrrrrrrgh” or “bleeeeeggghhh” or “you have to be kiiiiidding me” and rolling my eyes and banging my head on the back of the chair in the library and generally libraries frown on that sort of behavior. She co-wrote it with a guy named Jerry Kartzinel, who is a DAN! doctor. DAN! stands for Defeat Autism Now! and was a list of doctors endorsed by the Autism Research Institute (which I think would have really befitted from an exclamation point of its own: the Autism Research Institute!) who would treat autistic kids with a variety of biomedical approaches, all of which Jenny and Jerry discuss AT LENGTH in this book. Ranging from relatively uncontroversial and harmless (gluten free/casein free diets, probiotics and vitamin supplements) to nutty and dangerous (chelation, hyperbaric oxygen chambers, chemical castration), DAN! doctors like Jerry Kartzinel made their living by telling desperate parents that their children could be cured if only they tried these very expensive and totally overwhelming treatments to undo the heavy metal poisoning they had been exposed to through vaccination, heavy metal poisoning which of course can only be confirmed by these specific blood tests that they run at this one lab in Kansas, because that’s not suspicious at all and is totally how blood tests work.


The book is literally just these two people talking about all the interesting things that come out in kids’ poop once they start flushing out toxins. It’s EXHAUSTING, and one of only two books I have ever been tempted to buy simply so I could scribble fact-checky tirades in the margins. (The other book was Liberal Fascism by Jonah Goldberg. Both times I managed to keep my wallet in my pocket, my pen in my purse, and my brain from actually melting out of my ears…but only just barely.)

The Autism Research Institute is now defunct, the official DAN! doctor list has disappeared, Jerry Kartzinel has a Wellness Center where you can buy his own line of supplements and enzymes for only $150 a month, and Jenny McCarthy isn’t showing up much at Generation Rescue or SafeMinds rallies now that she has a place at the table on The View where she wears smart lady glasses and talks about how much she likes to make out with the New Kid she married. (What’s truly horrifying most days on The View is that Jenny McCarthy is almost always the voice of reason. Don’t watch The View, people.) Jenny has walked back pretty much every previous statement she has ever made about vaccines, claiming she’s not ANTI VACCINE per se, she is simply pro SAFE vaccines and pro PARENTS MAKING THEIR OWN CHOICES AND DOING THEIR OWN RESEARCH about vaccines. I think that Jenny McCarthy death calculator website took the wind out of her sails a little bit. But let’s talk a little about parents doing their own research about vaccines. Because that brings us to a guy that I used to give the benefit of the doubt, but who recently has me seeing red.

•Bob Sears: Most expectant parents of the last decade, when they first found out they were pregnant and went to the bookstore to flip through books that would either give them heart attacks about everything they were doing wrong (NO CHEESE OR MEAT OR WINE! COFFEE? ARE YOU EVEN SERIOUSLY ASKING ME THIS? NO YOU CAN’T HAVE COFFEE DON’T YOU LOVE YOUR BABY?) or teach them that everything would go perfectly because Mother Earth Gaia Perineal Massage Evening Primrose Oil, ran across the books in the Sears Library. The Baby Book, The Pregnancy Book, The Birth Book, etc etc etc. Those books were written by Dr. William Sears and his wife Martha, who is a nurse. Bill Sears is known as the primary proponent of “Attachment Parenting” which advocates natural vaginal childbirth and extended breastfeeding if you can swing it, baby wearing, co-sleeping, and basically trying to be as in tune and responsive to your baby’s needs as possible. I read all these books and did a lot of attachment parent-y stuff, and it’s great but it is also EXHAUSTING, as you can pick up from the paragraphs Martha contributes here and there throughout the books that try to sound perky but have a definite undertone of “I have been a stay at home breastfeeding baby wearing cosleeping mom to eight children I am so tired haaaaaalp.”

Appearances to the contrary, Bob Sears is not Bill Sears. Bob Sears is in fact the second oldest child in the Sears brood. He has contributed a few books to the Sears Library, and the one he is best known for is The Vaccine Book. Yes, Bob Sears is a) not his father as much as his books make it kinda look seem like he is, and b) the guy who came up with the much vaunted Alternative Schedule. All hail Dr Bob and his sensible alternative schedule.

I have read The Vaccine Book. I think he does a good job at explaining the different shots, mostly, and having an alternative schedule to suggest to wary parents is certainly better than ending up with parents who don’t vaccinate at all. I would like to take Dr Bob at his word that he believes in the importance of vaccination and isn’t an “antivaxxer” per se and is really just trying to find a middle path through all the sturm und drang on either side. Unfortunately, I have also read another one of his books. It’s called The Autism Book: What Every Parent Needs To Know About Early Detection, Treatment, Recovery, and Prevention.


I’m going to give you a hint, as a parent who has tried to read basically everything about autism I can get my hands on. If you see the word “recovery” anywhere in the title, you’re dealing with an antivaxxer, or at the very least someone who is deeply entrenched in a biomedical treatment model of autism. Dr. Bob brings up the Wakefieldian measles enterocolitis theory as a possible cause of autism. This book was published in 2010, the same year that The Lancet completely retracted Wakefield’s study. I talked a little bit earlier when DAN! came up about what biomedical treatments consist of. Dr Bob talks about all of them in The Autism Book. Megadose vitamins, chelation, hyperbaric oxygen chambers, enzymes and yeast treatments and GFCF and on and on and on. I don’t remember if secretin (i.e. chemical castration) was discussed, to be fair, but if MMS treatment was around in 2010 when the book came out, I bet he would have made room for that in his book, too. (For those reading this who don’t know, MMS stands for Miracle Mineral Solution, which is basically giving your child ever-increasing doses of bleach both orally and rectally to clear them of all their toxins. Wheeeee!)

princeDr. Bob likes to claim he’s not antivaccine. But anyone who has read The Autism Book knows that Dr. Bob is on Team Biomed, all the way. He’s made that increasingly clear over the last couple years as more and more clusters of vaccine-preventable illness have popped up. Pouting over whooping cough. Tut-tutting about rotavirus. But man, this Disneyland measles thing has just blown his cover wide open. His initial reaction to the outbreak was telling people that they’re overreacting and measles is nothing to fear, and then when people called him out about it he posted a petulant reply on Facebook saying that OF COURSE people should get their measles vaccines but meanwhile, “just to be complete, since I mentioned the ‘S’ disease as well, let me remind you that there is a vaccine to prevent stupid. If you haven’t gotten it already, you should.”


I’m pretty sure the vaccine against stupid is reading Bob Sears’ Facebook page on the regular. That way you will be exposed to his idiocy in small doses so when he totally loses it, like he did the other day with his satirical piece about how Disneyland should require all parents of kids with ADHD to medicate their children, you will have built up an immunity to that astonishing level of asshattery. Also good to know that Dr Bob not only thinks my kids are vaccine-injured, but that one of them has another disorder that’s super funny and shouldn’t be medicated without ridicule. Isn’t watching kids suffer from ADHD hilarious? Almost as hilarious as kids going blind from measles! Dr. Bob’s Orange Country pediatric practice is most assuredly a non-stop laugh riot, and also a geographically super convenient petri dish for communicable childhood disease. It’s a small world, after all.


I’m going to stop there for now, because this got way way way longer than I intended it to — and we haven’t even gotten to Age of Autism! Or the Congressional Hearings! Or the Vaccine Court! Or Deuce Bigalow Male Gigolo! Give me some time to regroup and I’ll come back with more. In the meantime, remember to spay or neuter your pets! Wait, that’s not it…

“It’s the sound of the unlocking and the lift away / Your love will be / Safe with me”

He recognizes my footfall. He can be awake in his crib for an hour, resting peacefully through absolute cacophony upstairs, but the moment he hears me walk across the floorboards in the living room above his head, he cries out.

I once remarked that he hugs me like he’s Princess Leia and I’m Han Solo and I’m about to be frozen in carbonite and he doesn’t know if he’ll ever see me alive again. On more than one occasion I have joked, when he grabs me by the legs or snuggles into my lap, that he needs to learn he can’t climb back inside me.

About a month and a half ago, he broke my glasses. He’d gotten into the annoying habit of slapping them off my face as I loaded him into his car seat. He really wanted those glasses off of me. He would then look at me fondly and caress my cheek, as though he hadn’t seen my face, my real face, in ages. I think it was a weaning thing. When he nursed, even when he was a very small baby, he wanted to make constant eye contact. Gazing at me in wonder.

I don’t think anyone in the world has ever loved me as much as he does.

I am constantly afraid that something horrible is going to happen to him. A freak accident, when he’s just out of my sight. Awful scenarios, running through my head, all the time. I read the Phillippa Gregory book “The White Queen” last week, and the closer I got to the ending I knew was inevitable, that the queen’s sons would be taken to the Tower of London and never come back out, the more white-knuckled my grasp of the library binding became. My New Year’s resolution this year (and I never make resolutions, so this was big for me) was to stop reading things on the internet that would upset me. True crime, houses burning down with children inside them, longreads about child pornography sting operations. And yet somehow last night I found myself reading the Ted Bundy wikipedia page, half-convinced that there was a serial killer downstairs silently strangling my children and on his way to kill me too. I don’t know if this is normal. I kinda assume that it is and it isn’t. All I know is that I love my children far more than I love myself and I live in constant terror of something horrible happening to them.

So I just don’t understand.

I understand why people, in the comments of some articles I have been unable to pull myself away from of late, want to offer up some small bit of empathy or sympathy to a mother who feels pushed to the breaking point, who feels alone, without support, without hope. I get why people want desperately to create some sort of context, to help prevent, to try to understand.

But I will never understand.

I will never understand how someone could try to kill their child.

I can empathize with Dorothy Spourdalakis right up until she gave her son sleeping pills and then stabbed him in the heart.

I can empathize with Kelli Stapleton right up until she lights the grills in the back of her van.

And then my empathy is gone. And then my compassion disappears.

My son is not autistic, but my daughter is. The emotional abundance I receive from E is not as readily accessible from D a lot of the time. But I have no doubt she loves me. She is able to show me that, through words and deeds. She always has. I don’t know enough about Alex Spourdalakis or Issy Stapleton to speak to their capacity to express connection with their parents. All I know is what the media narratives tell me. They were large, and violent. They were locked in, in their own worlds, a burden. Nevermind reports, firsthand reports I’ve read, from people who have met these kids, seen them talk, seen them play. I do not doubt that these children were more difficult to deal with, on many levels, than my own. But they are your children. They trust you, completely, inherently, from birth. Your job as a parent, more than anything else, is to love and protect your children. Their lives are not yours to dictate. You have no right to decide when and how they will die. When the language we, as a society, use to describe autistic people is language that is othering, dehumanizing, we set up a stage for this to keep happening. When you see your children as a burden, as a curse, as people trapped inside a shell of an illness, as props in your play…that’s the only way I can understand such acts. And with that I cannot, will not, empathize.

When D was a baby, I was shellshocked. I felt an immediate connection with her when she was first placed on my chest, but in the weeks that followed I felt that connection crumble. She was a voracious nurser, wanted to eat constantly, wouldn’t sleep anywhere that wasn’t a lap or a shoulder or a busom. But she wouldn’t tolerate a wrap or a carrier. When I tried to strap her to me so I could accomplish something, anything, she wrestled against me and screamed. Once we got her on some reflux medicine, things got better. But there was still a constant struggle within her that I could perpetually see — her desire to be close to me, so I could nourish her, but simultaneously shuddering and clawing away from confinement. The fervent and almost obsequious love that my son showers me with…it’s not the same as what D and I have. The summer before he was born was a nonstop struggle to come to some sort of detente with her. We screamed. We cried. We hurt each other. I didn’t know what was wrong between us, but despite our epic rows I clung to her. A few days before E’s birth I crawled into bed next to her and we held each other close. I knew it was the last time it would be just me and her together, alone together, as we had been so often for so long. She is my first child. She frustrates me endlessly. She makes me proud every day. A phrase I have seen very often on autism self-advocacy blogs is “Behavior Is Communication”. When D does things that are violent or aggravating or disruptive, I need to stop myself from simply responding to the behavior and instead try to deduce what has led her to that behavior.

Why was Alex Spourdalakis violent? Was it because his mother was subjecting him to biomedical “cure” treatments recommended by her friends Andrew Wakefield and Polly Tommey? Was his gastrointestinal pain a result of bleach enemas? Chelation? I expect we will find out at the trial. But he was trying to tell his mother something.

I will never understand.

Why was Issy Stapleton violent? Was it her reaction against endless behavioral therapies aimed at stopping problematic behaviors rather than understanding what she was trying to communicate? Was it a reaction against a mother that clearly had some need for drama, a mother who posted videos on YouTube of herself weeping and screaming as her daughter comes at her? Trying to tell her mother something.

I will never understand.

Your child is not a bit player in your own personal psychodrama. Your child is not a puzzle waiting to be solved. Your child is a gift, a miracle in every cell of his or her body, even if that body is in some way different from what you expected, what you always thought you wanted in a child. Your child is new and unfinished and essentially defenseless against you. Yes, even a 14-year-old autistic child who outweighs you. You are the parent. You always have options — not always good options, but options. Options better than killing your child who trusts you, who needs you, who is struggling and needs your love and your guidance, not your disappointment and disdain and despair.

I think it is an insult to my friends who are parents to autistic children who fall on the more “severe” end of the spectrum to express sympathy for these women. Thousands of parents are raising children who are very similar to Issy Stapleton and Alex Spourdalakis and would never dream of murdering their kids. We can and should have a discussion as a society about lack of services, lack of supports — but can we please do it independently of the conversation about murdering children? Kelli Stapleton had total strangers on the internet donate money, enough money to send Issy to a residential therapy program for six months. Dorothy Spourdalakis had people from Age of Autism filming in her kid’s hospital room; Andrew fucking Wakefield at his bedside. These were NOT women who were toiling away anonymously, penniless, without any resources or supports.

As a parent, it has been relatively easy for me to find blogs of other parents where we can offer each other support, to find accounts in the media that promote sympathy and understanding towards parents of children with autism. I agree that in our day to day, non-internet life, it can be hard to find the support we need. But the overall narrative in the media is one that gives parents a voice. Conversely, I have found it is extremely rare to find blogs or articles that are written from the point of view of autistic adults. Really. It wasn’t until I found Shannon Des Roches Rosa’s blog (through a search about iPad apps, of all things) that I was introduced to the voices of autistic adults from all points along the spectrum, from Ari Ne’eman at the “high-functioning” end to Amy Sequenzia at the so-called “low-functioning” end. So many parents of autistic children believe that organizations like the Autistic Self-Advocacy Network are made up solely of Aspies who don’t represent their non-verbal or aggressive child. They are WRONG, and the reason they are wrong is because they simply haven’t seen it, seen what their children are possibly capable of as adults. People like Kelli Stapleton and Dorothy Spourdalakis see their children’s autism as a life sentence, not only for their children but for themselves. Of course that makes them depressed and anxious, and in some cases, in people who already have their own issues to deal with, personality disorders, whatever it may be…they snap. And what ASAN and other adult autistic advocates and even many parents like myself are trying to express is that we cannot offer our sympathies to those people who snap, because their actions do nothing but perpetuate the currently rampant idea that autism is an unbearable curse for parents and children. That devalues and dehumanizes autistic people. The most common response to these tragedies, it seems, is to focus on the experience of the parent, try to find what possibly triggers their murderous behaviors. I think it’s more important to change the focus from the parents to the children, emphasizing how our society’s general perspective on autistic children is a dehumanizing gaze that is so pervasive that it warps how many parents view their own children. As a parent, I struggle, every day. But I have to always keep in mind that my daughter is struggling more than I am, and do everything I can to help her through. And part of that is refusing to support a media narrative that says I deserve a voice but my child doesn’t.

My son just turned two, and he doesn’t talk much. It’s frustrating, and ironic, to have had a daughter who is autistic and couldn’t stop talking for a million dollars, and a son who, from all available evidence, is not autistic but is just a big ol’ mushmouth. But one of the things he can say is, “I love you”. It doesn’t sound like “I love you.” It sounds kinda like, “N’doo.” But he says it to me every morning when I get him out of his crib. I speak his language. I hear his voice.

“This is the fear, this is the dread, these are the contents of my head.”

For the last year or so, I’ve seen lots of lighthearted Facebook updates from my mom cohort jokingly complaining about how their kids won’t stop asking questions.  At around 3, most kids hit the infamous “why” stage, memorably reinacted by Louis CK in the clip below:

So, my friends would post examples of the endless questions their preschoolers were bombarding them with, and I would laugh and reply with “shut up and eat your fries!” because it’s funny, it really is.  But every time, a little part of me would deflate and wither, because my preschooler had never asked a “why” question in her life.  There would occasionally be other questions (“are you” “is that” “can i” etc. etc.) but very few “wh” questions and literally no “why” questions.  I looked online and found that this was very common in kids with high-functioning autism, even kids who were highly verbal, like D.  This was heartbreaking for me, both from an obvious developmental standpoint and a…well, look.  You’re dealing here with two parents who have an absolutely silly number of post-secondary academic semesters between us.  Asking questions is the foundation of learning.  Inquiry is so important to both of us.  It was hard to wrap my brain around the idea that my child might lack the ability to question.  How do you learn without that curiosity?  Was she just innately incurious?  Or was she dying to learn more but had no idea to even go about pursuing such a thing?  The whole concept was anathema to me.  She is clearly very intelligent, but without the ability to question, she would lack the necessary motivation to pursue knowledege.

Back in the winter, we started D in private speech therapy.  Just one session a week, alongside her occupational therapist, in what they call a “co-treat”.  The goal was to work on pragmatic, or social, language.  We also made “wh” questions one of her measurable goals in behavioral therapy, so her line therapists would actively model question-asking in an effort to encourage her to follow their lead.  I had gotten so frustrated with her inability to understand the logic behind question-asking and -answering.  If/then, why/because…it was all topsy turvy. Imagine this conversation, over and over again, for two years, trying to “parent with love and logic”:

Me: “Do you understand why I’m upset with you?”

D: “Because you yelled!”

Which of course just made me want to yell more.

It came slowly, and it took me a while to notice.  There were little things, just moments where she would show interest in others.  One day she pointed (pointing was also a big challenge — non-verbal communication skills are almost universally delayed in kids on the spectrum) out the window at her therapist’s van parked on the curb.  “Is that your car?” she asked.  It wasn’t a “wh” question, but it was a question that she had clearly constructed from scratch on a topic that had nothing to do with her.  She was randomly curious about someone else’s life.

Then there were more and more.  “Where are we going?” “Who is Kat?” (about my friend who she knows as Katherine but who I almost always call Kat) “When can we (x)?” “What is (x)?”

And then the Whys came.

I can’t even remember the first why, but they’re here now.  They started out as “Why can’t I (x)?” but moved on to “Why is (x)?” “Why does (x)?”…they still haven’t reached “shut up and eat your fries” territory, but more and more she wants to KNOW, she wants to UNDERSTAND.  And even though her fundamental comprehension of big ideas like time and space are still more delayed than other kids her age, she’s suddenly more eager to learn.

And it hit me a couple days ago that parenting is about to get so much more complicated.

I was spoiled by the fact that I could talk about things in broad terms and she would never ask for more specifics.  I tried my hardest not to talk about her like she wasn’t there any more than any parent has to; I presumed that she was listening even if she didn’t seem engaged.  I presumed she understood.  I presumed competence.  But I totally took for granted the lack of follow-up questions.

Suddenly I’m realizing that I will have to have all the big confusing conversations with her that most parents have with their kids.  Conversations about death, about sex, about how things work in this world.  Part of me honestly thought she might just never want to know, or at least she would accept what I told her and not push me to explain at more depth, or debate my assertions.

One day, one day much sooner than I was prepared for, I will have to explain to her why she takes her pills.

One day, I will have to explain to her what autism is.

I am split between ecstatic joy at seeing my child exceed our expectations and abject terror in the face of having to explain something like that to a little girl.

“Your brain works differently.”

Yes, but how?

“Certain things in life will be more challenging for you.”

Yes, but WHY?

“There are things not in your book. There are paths outside this garden.”

My husband expressed some reservations about my recent posts about my daughter. He worries that someday D will be able to read this and will be hurt by things I have said. So I think I need to clarify the point I wanted to make. D is difficult to handle a lot of the time. So are all small children, but her particular set of clinical peculiarities makes her slightly more challenging than most. But I love her wholeheartedly, for who she is and always has been. The therapies D does are not an attempt to “cure” her. I understand why other parents of autistic children (or “children with autism”, as some parents prefer; I don’t, for reasons I hope will soon be made clear) choose a different path. It would be unfair for me, as someone who is able to have a relatively linear conversation with my daughter, to judge parents with non-verbal kids, or kids who had a distinct regression, for seeing autism as far more insidious than I do, and for thus taking a more aggressive approach to helping their children. Parents who try different diets, different vitamin supplements, even things like hyperbaric oxygen chamber treatments — these things aren’t harmful, and if they help certain children make gains in social communication or reducing the frequency and duration of meltdowns, that’s awesome. We have dabbled in a few supplements, and I try to pay close attention to any dietary triggers D might have…but overall we have chosen a behavioral approach rather than a biomedical one, because I don’t see any evidence, in D’s case at least, that autism is a “disease” that needs curing.

We wanted to give D treatments that would help her adapt better to a world that isn’t made for people whose brains work the way hers does. We do a ton of play-based therapy, which, among other things, has helped her learn how to play in a way that looks familiar to other kids, so she doesn’t become isolated due to her more esoteric interests. We have done occupational therapy, to help her learn fine motor skills that are important both in academic/social environments and in self-care. We have done speech therapy that focused mainly on pragmatic speech, so that she would become more confident in her ability to express her own thoughts rather than recite scripts, and so she could begin to communicate in a reciprocal way with her family and her peers. All of those things simultaneously help her better regulate her moods, identify her emotions, and cope with frustration. She does a lot. Play is her work, and she works hard.

Many people would look at that paragraph and ask how we can possibly say we aren’t trying to change our child if we’re making her do all that. But the thing is, D herself, who she is and how she works and what she loves, is fundamental and unchangeable. And that fundamental, unchangeable part of her is inherently autistic. It’s not something that can be separated out and cured. She has been so clearly and entirely herself since the day she was born that it is impossible for me to imagine a D who is not autistic. We do these therapies as an early intervention so that she learns the skills she needs to integrate herself into society. But there is an even larger part of this equation that is about learning, as parents, how to nurture this particular “square peg”. Probably the best possible example of how these two aspects come together happened yesterday: We went strawberry picking.



Almost exactly two years ago, I took D strawberry picking for the first time. She was two years and three months old. I was about 6 months pregnant, maybe 7. I had been looking at adorable pictures on various friends’ Facebook pages of their two-year-olds strawberry picking for the previous couple weeks, and I was totally psyched for this field trip. We were planning to meet some other kids there. We read Blueberries For Sal that morning, and D walked around the house throwing a variety of foodstuffs into a beach pail and announcing, “Kerplink, kerplank, kerplunk!” We were ready.

We got to the farm and almost immediately the whole thing started to collapse like a shoddy toothpick castle. D refused to pick any strawberries. She refused to even try any that I picked, declaring, and I quote, “Strawberries are yucky.”

“What are you even TALKING about, strawberries are yucky??” I spluttered. “You LOVE strawberries.”

She ignored me. I looked around, desperately, to see if any of my friends had arrived and missed me, wandered off to a separate patch. If only she could see other kids picking strawberries, I thought, she would see how much fun it could be. There was no one. At a farm 15 miles from our apartment, I had suddenly never felt more alone in my life.

D pulled heaping handfuls of soil from under the strawberry plants and let it float to the ground through her fingertips. I ignored her and merrily trilled, “Kerplink, kerplank, kerplunk!” through gritted teeth. Modeling behavior. Modeling behavior.

She jabbered in the nonsense language she often lapsed into as she sprinkled the dirt onto her head. “Honey, no,” I said, sternly.

“Honey, noooooo,” she repeated as she began to rip up the leaves of the strawberry plants.

“Seriously, I mean it. Do NOT rip the plants. NO.” And then she threw dirt over my head. As it settled on my eyelashes, I stood up, dusted myself off, and said, “OK. That’s it. We’re done.”

That’s when she ran.

D bolted at top speed through the rows of strawberry plants, crushing fruit beneath her sandals. I tried to chase her, with 25 pounds of extra pregnancy weight hanging off me, under the broiling summer sun, for just a moment, before I gave up. FUCK THIS, I thought to myself. I stomped as quickly as I could in petulant fury across the fields, screeching, “COULD SOMEBODY PLEASE GRAB HER BEFORE SHE HITS THE PARKING LOT??” at all the strawberry farm attendants who were staring, mouths agape, at the spectacle.

Someone did eventually stop her, and I actually managed to bring a partially-filled flat of berries up to the front of the field — I had picked enough that I felt obligated to pay. As we stood at the checkout stand, I held D’s wrist so tightly, I’m ashamed to say, that I’m pretty sure I bruised her, since she was trying to wrench herself, screaming bloody murder, out of my grasp to dart away again. I ran into a friend and her child in the parking lot, but I have literally no recollection of what we said to one another. All I remember is seeing red. Have you ever literally seen red? I think it happens when the rage in your brain pushes all the blood vessels in your eyeballs closer to the surface. That’s how science works, yes? My field of vision was the color of blood. It wasn’t the obstinance, or the destructiveness, or the wanton disregard for her personal safety. It was the unavoidable sensation that she had not even been on the same planet as I was. This was not a fun outing gone wrong. This was simply a set of perpendicular lines. D and I did not intersect, emotionally or functionally, at any point during that entire activity.

In the car I began to yell, but I couldn’t even come up with words to describe how I felt. I simply started wailing, huge heaving sobs. And in the backseat, D began to laugh hysterically. She didn’t realize I was crying. She thought I was laughing.

It was a real low point in our relationship, let’s just say. My friends eventually arrived at the farm long after we left. The pictures they posted on Facebook were adorable and made me want to stab myself in the chest.

Yesterday, I took D strawberry picking. Different farm, brother now extant, and accompanied by the same friends that we had crossed paths with in the parking lot two years ago. We walked up to the patch that the proprietors said would be most bountiful; I figured if D didn’t have to dig too deep to find good berries she might find the process more engaging. She picked about 5 berries, and very calmly said, “OK, I’m done.” I tried momentarily to cajole her back, but she said, “No thanks.” So I let her run off, because we’ve reached a point where I can now actually trust her to stop if I say stop…mostly. There were goats on the farm, and she wanted to pet the goats. It was understandable. I know she prefers fauna to flora, as a rule. I tried a bit harder to get her brother, who is about 6 months younger than she had been on that first outing, to participate in the activity at hand, but he just wanted to eat the berries I picked and tromp through the rows of a muddy cornfield. And then he joined his sister and her friend by the goats. There was also a young calf that they all loved. An older child pointed out that they could feed strawberries from a nearby patch to the animals, so D and her friend proceeded to do just that. My friend and I then moved our picking operation to the opposite side of the same patch. I literally met her halfway.

D is always going to be a little bit in her own world. But we, as a team, have come so far in two years that it makes my heart feel like it’s going to burst some days. My love for her is overflowing. I don’t want her to change who she is. I love who she is. I just wanted to find a way for us to meet halfway.


Recently, a boy named Alex Spourdalakis was brutally stabbed to death by his mother. He is only the most recent in a line of similar murders. As I said earlier, my experiences simply cannot compare to those of parents who have non-verbal, non-toilet-trained, violent and unpredictable autistic children. But this woman apparently, based on the support she received prior to the murder from Andrew Wakefield and the anti-vaccine activists from Age of Autism, subscribed to the idea that autism was this THING that afflicted her child, that had somehow stolen her real son from her, that needed to be cured at all costs. I’m willing to bet that at trial we’ll hear about things like chelation and bleach enemas, all these awful treatments that desperate parents try when it is too hard to accept that autism is part of who their child is, down to their very core. Behaviors can be changed, both on the part of the child and the parent. But Alex Spourdalakis was not a “child with autism”. He was an autistic child. And now he is dead. I know his mother was overwhelmed in a way that I couldn’t even presume to imagine. But I truly believe that the only way to keep more awful tragedies like Alex’s from happening is to fight for autism ACCEPTANCE rather than autism AWARENESS. Awareness is the first step. But it’s not enough. Alex Spourdalakis’ mother may have loved her son, but she never accepted him.

I love my daughter. I became aware that she is autistic; I accepted that she is autistic. And now I’m on the next stage, which is EMBRACING that my daughter is autistic, recognizing the challenges but still loving every inch of her. She works so hard, but she’s working to change and improve BEHAVIORS, not who she innately is. As a parent, I try to do the same…so we can continue to meet each other halfway.

I don’t have a problem with D reading this someday; I actually hope she does. Because I want her to know that despite any sadness and frustration I have as a parent, it doesn’t affect how I feel about her as my child. She’s the best. I can’t imagine having a different daughter. She’s the best.


“When the wheels cease to spin, the walls and the fences will grow higher than redwood trees.”


I came across a post on Tumblr yesterday that was written by a preschool teacher and had gone somewhat viral. The list was great, overall. It had awesome points about respecting your children as autonomous individuals, talking to them with the presumption that they understand you, and not forcing them to do things without explaining why. As someone who has always spoken to my kids as if they understand me, even when they were newborns (because if you’re alone with a baby all day, if you don’t talk to them you’ll probably have a total breakdown), I liked a lot of what she had to say. But there was an item on the list that literally made my body go stiff. “Children will copy you, MODEL FOR THEM.” Suddenly I remembered why I don’t like lists of Things Parents Must Do. It’s because all they really do is make you feel like a failure if a) you are unable to do something on the list (breastfeed, cloth diaper, homemade baby food) or b) you do something on the list and it doesn’t work with your kid (basically anything involving getting your child to eat vegetables/sleep through the night/crap on the can/so on and so forth).

I know from firsthand experience that every list that positions itself as the definitive Way To Parent is going to be completely the WRONG way to parent some children. When this woman said, “Children will copy you, MODEL FOR THEM,” all I could think was, “Well, no.” I modeled for my child. I modeled my ass off. And she didn’t copy me. Because she’s autistic, and I didn’t know it, because autism doesn’t look like what I thought it looked like, even though I considered myself knowledgeable about the topic. I was not. I remember multiple conversations I had with a good friend of mine whose son had a pretty severe speech delay where I said, “Well at least you know he’s not AUTISTIC. He’s so affectionate!” My daughter was perfectly affectionate. And she talked. Talked and talked and talked. Although she’s never had this as part of her official diagnosis, she would seem to fit the criteria for what is called hyperlexia. She talked earlier and more than any of her peers. During one of her first speech and language evaluations, the therapist looked at me wide-eyed and said, “I don’t think I’ve ever met a more well-spoken two year old.” And then when she went home to write up her notes, she listened to the tape-recorded speech sample she had taken and heard the same thing that we had recently noticed — all of her language was scripted. She would say the same exact phrase with the same exact intonation every time. That’s called echolalia, and it’s a very important stage in language development, but one that she should have pushed past by then. She should have been using language to communicate in a way that she simply wasn’t. She was a parrot. We had always thought it was so cool and funny that she would hear these long complex phrases once and then be able to spit them back whole; that she could hear us read a book once and recite it back to us the next day. But it was a parlor trick, at best.

Language-wise, she was a perfect mirror. She was an aural xerox machine. But behavior-wise, the kid just didn’t learn things the way I had expected, the way all the other kids did. I was under the impression that you just had to expose kids to things, let them see you do something enough times and pretty soon they would try to do it themselves. I’ve now had that experience with my son. He sees us eating with a fork; he tries to eat with a fork. He sees us brushing our hair; he tries to brush his hair. When he wants to go outside, he grabs his shoes and tries futilely to put them on his feet. D never did any of that stuff, never had any of that “I can do it myself!” mentality. Things that were on all the lists as motivating suggestions were utter failures. Other kids absorbed the world like a sponge. D just ran in circles, watching but not learning. I would see children pretending to cook with play food. D banged the food together to see how loud a sound they would make. Other children would build with Duplo blocks or run trains around tracks. D knocked towers down and scattered the blocks, ripped tracks apart and threw them around the room. Other children would sit and happily color with markers. D would draw a few cursory lines, then suck out the ink and run away with a marker clutched in each hand, like she had power buttons in her palms that revved her engines, and the tighter she squeezed those cylinders the faster her wheels would spin, go go go. You would call her name to no response; the word “stop” made her laugh and run faster. There was a period early on when she thought her name meant “no” because she heard us yell it angrily so often.

I had become the yelling mom. I never wanted to be the yelling mom. I wanted to be the mom in all those “peaceful parenting” blogs who appreciated every moment with her child because they grow up so fast, you know, and before you can even blink this precious time will be gone, etc. etc. etc. But instead of cherishing it, I wanted this time to be gone. I wanted the seconds to disappear. I kept holding out hope that the next day would be better, that something would click, that I would be firm and consistent for the 500th day in a row and it would finally make a difference. I followed all the suggestions on this list, all the suggestions on all the lists, all the suggestions from parents and aunts and uncles and friends and friends of friends, and nothing worked. She just didn’t respond. And I would spend my few free moments in tears, not understanding what I was doing wrong, how I had failed so abjectly at parenting.

Then one day I went to a hastily arranged meeting at D’s new preschool, no more than six weeks into the school year, convinced they were going to inform me that my daughter was no longer welcome there…and instead they handed me a checklist of “red flags” that she was exhibiting. That day changed my life — for the worse, at first, because obviously it felt like a karate kick to the solar plexus to hear that something was “wrong” with my kid. But then, in the long run, for the better, because honestly, part of me already KNEW there was something wrong with my kid; either that or something was seriously wrong with me. What I needed, and what I finally got, was for someone to take my hand and say, “You are not a bad parent. You’re not irreparably fucking this up. Your child needs help. You need help.” I had spent the better part of two years ramming my skull into a brick wall day after day. I needed someone to help me find a way around the wall, because not every child fits into a box that allows for the list of The Definitive Things a parent should do. And every author of every book or article or blog or list like this one who clearly means well, that has the best intentions for advising you, is just another brick in that wall when you’re dealing with an out-of-the-box kid.