I Am Sounding the Alarm (on Autism Propaganda, Everyday)

[CN: ableism, murder, violence]

puzzleownToday is the last day of “Autism Awareness Month” and a lot of the news stories featuring autism will be tucked away until next spring. I’m sure a certain organization has had quite a successful “Autism Speaks Fundraising Month,” I’m sorry, I mean, April. Much of my discussion this month revolved around Autism Speaks. I simply can’t get away from them this time of year. From chocolate bunnies to baseball games to toys, many of you have seen your fair share of blue puzzle pieces and have probably inadvertently donated to them. I wrote earlier this month why I do not support Autism Speaks. Believe it or not, I have even more reasons.

When people ask me why I don’t like Autism Speaks, I explain their lack of focus on true advocacy for autistic people, the bulk of their funding does not go toward creating support systems and programs, and that their campaigns are dehumanizing and harm people on the spectrum. When people ask for specific examples of this, I first point to Autism Everyday. Some say I’m too stuck in the past, that was almost 10 years ago. Okay, then I Am Autism. When people mention that Autism Speaks apologized for it, I point to Suzanne Wright’s 2013 Call for Action. Whether I’m looking to a decade ago or to this year and their Sounding the Alarm documentary, Autism Speaks hasn’t changed their message. Since the public isn’t typically familiar with all of their rhetoric, I decided to break it down here. After reading this, tell me how I’m supposed to give my support to Autism Speaks.

The following are quotes from the Autism Speaks’ 2006 documentary, Autism Everyday. The reactions to each are a compilation of thoughts I wrote in 2008 and today. The video is available for free online, I have chosen not to link to it.

“I so hope I won’t be changing diapers when he’s 6 ½.”

That quote is played against sad violin music (literally) as the mother changes her child’s diaper. He is 5 or 6, this scene was unnecessary. Self-care, whether we are seated on a toilet or having a diaper changed is not for public-viewing. Especially when the imagery is used only to show how awful it is—having to change the diaper of a child over the age of two is a horrid fate, it seems. I changed my daughter’s diapers up until a couple weeks before she began 1st grade. She was six and a half. I didn’t begrudge the act of doing what was, as her parent, part of my role. I don’t recall signing a contract when she was born that said I was done assisting with toileting needs at 18 months. What I did scoff at was the difficulty in finding diapers that fit as she got older, and that I could afford.

I resented the fact that my daughter’s school had no experience with a child who was mainstreamed and required diapering care. While still in the district’s special education preschool program, months before she’d be attending kindergarten, her teacher (without my permission and against my desires) put her in underwear. The thought was perhaps my daughter was being lazy and just needed motivation to use the toilet. She wet herself in the classroom. She had a meltdown. A cleaning person had to come into the classroom. All of this, from the sensory issues of the wetness on her clothes to the disruption when someone new came into the room (and with the smells of cleaning supplies) to the fear of thinking she’d be in trouble had a negative effect on my child. So much so, she withheld urine following the incident and ended up with a urinary tract infection. My daughter has a history of kidney dysfunction, this was the last thing she needed. So, did I have issues surrounding my child’s need to use diapers past toddlerhood? Yes. Were they against her or related to my torment of having to change her diapers at age 6? No.

I’m not sure if I could point to a better example of entitlement. To me, Autism Speaks was founded by, and initially supported by, parents who felt entitled to a neurotypical, or in their words “normal,” kid. When someone asks me about Autism Speaks, I explain it this way: people got pregnant, imagined how their child would be and pre-planned their future. Their child is born, and life becomes more than they bargained for. They can’t get a nanny to stay, they are now forced to schedule in doctor and therapy appointments instead of pedicures and tennis matches. They are unable to take their child to the country club, and that really pisses them off. Many of these parents needed something to blame, and something to fight. So they found vaccines or any number of things to claim caused their kids’ autism, and they decided to fight autism itself. They were entitled to an easy kid, dammit. They did not sign up for autism and they are eager to let the world know this.

“He will never get married.”

I’m sorry, but, who is to say this? The child she refers to is around kindergarten age. How can she predict this? I don’t think any of us can look at a 5 or 6-year-old and predict much about their future. That holds true for autistic children too. These parents promote the misconception that children with autism do not learn, grow, or change as they get older.

She speaks of seeing a mother dance with her son at a wedding, and how she’ll never get to experience that. What parent can guarantee their son is going to get married? I know plenty of adults who are not married, and a lot of them will tell you adamantly, they are never walking down the aisle. So, what makes her think if her child wasn’t autistic, that she’d get that dance? Aside from that, is your child, any child, not marrying really your definition of a depressing future?

“The $50,000.00 that we’re in debt…it’s all about the autism”

Raising any child who needs additional medical care or services, particularly if those are necessary and not covered by insurance, can lead to a financial hardship. No one would argue that. This idea that autism, and only autism, bankrupts a family has become a trope of Autism Speaks. I question this fifty grand, in what I assume was spent over two years, as the child looks around 5. The mother talked about a special therapy room they built. If you have the money to build a therapy room, go for it. If you don’t? It’s not necessary and certainly not worth taking a loan out for. I easily transformed our living room and playroom to fit my daughter’s needs. This meant putting foam mats down if we were doing Floortime or when her therapists came to the house for a session. It meant buying, borrowing, or making things like a balance board, an exercise ball, a swing, sensory toys, etc. I was sure to keep any purchases within our budget.

Out-of-pocket costs for therapy and doctors’ visits can be absurd. I always faulted the insurance companies and laws for this, not autism. I worked with our doctors and therapists, making sure that the choices I made were most appropriate for my daughter, and our budget. I consulted with other parents and read a ton of books. There is a point where, due to finances, you have to dedicate more of your own time to helping your child or opt out of certain therapies. For me, that meant finding a reasonable pre-K program for my oldest daughter. She attended school three days a week and those were the days I could give 100% of my time and attention to my youngest. I had the therapists teach me techniques and we always had “homework” to do outside of the therapy sessions. I learned how to engage my daughter in ways that felt safe to her. The professionals gave me insight on bridging communication between my daughter and I. My point is that you don’t have to lose all your money because your child is on the spectrum. If you work with your insurance company and providers, fight to get additional benefits through insurance, state programs, and the school, and dedicate time to your child, it is possible. Don’t buy into the misdirection of Autism Speaks.

I’m not sure it’s the case for this family, but one sure-fire way to get into debt with regard to autism is committing to a 40-hour ABA program or getting tricked into so-called cures. If you are tossing your salary into recovery, well, that’s not the autism draining your bank account. That is you. From saunas to chelation sessions, the costs to “recover” your autistic child is a crime. They are selling lies and preying on parents who are willing to do anything to help their child. I’m not saying parents who buy into this are evil. I think they are misled, confused, and being taken advantage of. Autism Speaks isn’t helping when their propaganda continually tells us how awful autism is and that a good parent will stop at nothing to end Autism.

“I had sat in the car for about fifteen minutes and actually contemplated putting [child’s name] in the car and driving off the George Washington Bridge.”

This is said while her child, the same one she is talking about considering killing, is walking around behind her. This mother continues on, explaining she did not follow through with this, because she thought of her neurotypical child. This is the part of the movie that upsets me the most. I can’t imagine having those thoughts, but I do allow for the fact that mental illness can make us think, and even do, things we might not otherwise. But Alison Singer, the mother who made those quotes never admitted to anything of the sort. In the absence of mental illness, I cannot even open the discussion of what makes one get to that point and why it’s appropriate to say you thought about murdering your child. It’s not okay, not about any child. She so easily uttered those words, in front of her daughter, in front of a camera.

When anyone discusses this part of the film with me, I see Katie McCarron. I think about Scarlet Chen, Casey Albury, and Daniel Corby. I think about all the faces and names I’ve seen, and the list that grows every year, of autistic children killed by their own mothers. I think of those who were killed by their mothers in murder-suicides. I think of all the autistic people killed by their mothers, fathers, relatives, teachers, aides, and other caretakers. My heart rips open for those autistic children and adults. I will never forget these words Katie McCarron’s grandfather, Mike, had to say about her. From pictures and all I heard about Katie, she reminded me of my daughter. She has been in my mind each time I discuss campaigns that pity the parents and applaud those for being so brave as to admit to wanting to kill their child. This is not something I take lightly and neither should Autism Speaks.

The links I include for the stories of the murders of these children are not necessarily perspectives or news companies I respect, but they are what the public is reading when it comes to these cases. Far too often, all sympathy is given for the killer and not the victim. I wish this would stop. Autism Speaks is not helping put an end to this when every awareness campaign of theirs is riddled with stigma.

Alison Singer addressed her statements from Autism Everyday in 2009. I was happy to see she was willing to discuss it. Her response wasn’t exactly what I’d hoped for, she explains it wasn’t her daughter but rather the lack of appropriate resources and frustration at that which led her to contemplate driving off a bridge. I wish she’d said outright what she said was wrong, instead of excusing it as an honest snapshot of that time period in her life. This part of Autism Everyday and this perspective will never sit well with me. I was glad to read that it appears Singer is engaging with autistic individuals and she seems to understand why what she said was so offensive to us. I wish Autism Speaks would do the same.

The following statements in bold are from Autism Speaks’ 2009 short film, I Am Autism.

I work faster than pediatric AIDS, cancer, and diabetes combined. And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.

Well, there it is right there. Autism Speaks’ favorite talking points. Comparing autism to diseases, ones that kill you? They love doing this. I’m not sure why such comparisons need to be made. Other than attempting to pull money from those charities…? Make autism seem much more dire than, you know, AIDS or cancer, well that will do the trick I suppose. I’ve seen my daughter connected to wires in the PICU, doctors unsure of what was going on and me fearing I would lose her. I don’t think I needed that perspective to conclude that autism is not worse than cancer, but sadly it seems others do. I know that the second I had to even consider a day without my child, every moment after, the hour-long screaming fits, the hitting, the frustration at the school, the doctors and therapy appointments, all of it were far better than the alternative. I’m offended that Autism Speaks continues to compare autism to fatal diseases.

The myth of autism destroying happy marriages can step barefoot on every Lego I have in my house. Guess what Autism Speaks? Happy marriages don’t get destroyed. I do not blame autism or my daughter’s health for my divorce. The reasons my marriage did not work is because of the two people involved. People get married for a myriad of reasons, unfortunately sometimes those reasons don’t make for a healthy coexistence. People change and sometimes that means you don’t want to be with the same person. Stress of any sort will fracture a relationship, if a bond isn’t strong enough, that fracture will lead to a break. That’s not autism’s fault and certainly, none of it is on the autistic child. None of it. I’ve already given my thoughts on blaming autism for bankrupting families above. Jeez, Autism Speaks, get some new material, would you?

I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain. 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, wondering who will take care of my child after I die? And the truth is, I am still winning, and you are scared. And you should be.

Shorter Autism Speaks: Your life will be hell. Don’t even bother having kids.

This narrative leads you to believe that no child on the spectrum develops coping skills and is ever able to attend a birthday party or go to the park. It also says you’ll be embarrassed to be seen in public with your child. Really? Do I even have to make a response to this? Disgusting. They’re not done yet. The idea that autism “robs” you, and takes your child? Whenever I hear this, all I can think of is a changeling, and how I thought we left such folklore behind in the 19th century.

I Am Autism flips halfway through to then be the voice of the families fighting autism.

We have a voice.

Because, you know, autistic people do not. The false idea that if someone is nonverbal, they don’t communicate and thereby don’t have a “voice” is awful. Even worse? Ableism in a campaign claiming to advocate. Makes you wonder, doesn’t it?

You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands? Autism, if you are not scared, you should be. When you came for my child, you forgot: you came for me. Autism, are you listening?

Dehumanizing the autistic child twice more for good measure. I’m not sure if the listening bit is also ableism, as people on the spectrum sometimes appear to not be listening, or to be distracted. At any rate, overall, this film left me wondering when Pennywise the Clown was going to show up. It’s not autism I’m afraid of, it’s Autism Speaks’ next campaign.

This year, Autism Speaks brings us Sounding the Alarm. Yes, I cringed too when I first heard the title. I have yet to view the film myself, though I have read detailed reviews by trusted sources. There are some silver linings to this film. Autism Speaks is finally discussing what happens to autistic children when they become autistic adults. This is something many of us have been shouting for years about. What programs are they creating for autistic adults to improve job outlook, living arrangements, long-term care?

This film also brings up the lack of universal health care coverage for autism-related treatments. Now, for many kids, they can receive (traditional) speech therapy under the diagnosis of aphasia or articulation disorder. Other therapies like occupational and physical are also often approved if their fine or gross motor skills are delayed. This has always been the case for my daughter. Autism is an umbrella label, often we need more specific diagnoses to explain what is actually going on and how it can be helped. ABA therapy is the treatment that is not always approved. This is a topic for another post. I am a proponent of Floortime, which can be easily incorporated into the traditional therapy sessions like OT & ST, and is much cheaper than ABA. Again, all of that for another post.

I’m thrilled that Autism Speaks is starting to discuss things like employment and insurance in recent years. People seem to listen when they speak. I hope to hear even more from them on those topics and I beg they begin funding programs for adult services more than they are today. I wish I could say I’m excited to see this film. Instead, I realize I will watch it, only so I can say I did. I’ve learned that much of the film carries the same talking points, about the financial burden of autism and comparing it to fatal diseases. I’m most disappointed to learn that, once again, Autism Speaks has yet to realize that mothers talking about killing their children is not advocacy.

“Most days I want to kill him. And I love him. How is someone else going to have the patience?”

This will never be okay.

I’ll continue to repeat myself: I’m not saying we can’t have discussions over the unique challenges and differences faced by each individual on the spectrum. Those needs vary greatly, and all must be respected and considered. It’s okay, parents, to say you are overwhelmed, but don’t make autism, and thereby your autistic child, the enemy. We can and must discuss the cost of things like therapy to help autistic people, just don’t blame autism. Blame healthcare companies and loopholes for why your son’s speech therapy isn’t getting covered. It’s imperative we talk about appropriate and least-restrictive education options for autistic students, from preschool to college, just don’t blame autism. Blame school districts and poor state-funding for why your daughter isn’t receiving enough services.

Let’s address a lack of early diagnosis and beneficial intervention. Let’s remedy the shortage of care providers, therapists, and resources from childhood to adulthood. Let’s continue to support one another and seek help when needed. It’s okay to talk about self-harm and dangerous behaviors, we need answers and solutions. We also need awareness that teaches the public, our families and friends and the strangers on the street, that people on the spectrum may exhibit those behaviors, and how to react. We must train law enforcement on how to communicate with and respond to autistic people. We must continue these discussions, but blaming autism for every bad thing that happens in our lives and dehumanizing autistic people must stop. We’ve been blaming autism for so long, it’s been cited as a motive for murder, and in more than one case. Applauding a parent and calling her brave for admitting murderous thoughts about her child in reprehensible. Sympathizing with a murderer because their child is autistic is unforgivable.

I’m still not sure who Autism Speaks is speaking for, or what good the last few years of Autism Awareness Months have actually done. What I do know, the message from Autism Speaks is still the loudest when it comes to any “awareness” of autism. Their roots are heavily laid in the idea that autism is nothing more than an abhorrence, which we must fight tirelessly to cure. We need a new face of autism. We need new representation. Autism Speaks is never going away, let’s face it. What I can do, and what you can do, is continue to tell them their message is harmful and their budget needs adjusting. They listened before, when they removed I Am Autism from their site. It is my hope that eventually, all our views will be heard.

I’m willing to support Autism Speaks once I see changes made in their organization. As autism itself is a spectrum, we need a spectrum of autistics (and their families) to be seen and heard. We need their lives to be seen as valued, not stolen. We need autism to not be sold to the public as a monster for the sake of donation dollars. We need people on the spectrum depicted as, well, people. People who should have a variety of education and support options from diagnosis to adulthood. People who have value in our society. People who are worthy of dignity and respect. People who deserve human rights.



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