Friday, October 18, 2013

Why It Hurts Your Child to Be an Autism Cure Chaser

Susan Walton

This week in a local parent forum, a member spoke up about MMS, a “treatment” that TPGA has examined (with horror) in the past. (See TPGA science editor Emily Willingham’s Dangerous Interventions: MMS and Autism.) A TPGA Editor was present during the MMS forum discussion and suggested we are reprint the conversation, with permission from that forum's Moderator.

Maybe there should be a 12 step program for autism parents who have fallen for misguided and misdirected "hope."

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I am the father of a 5.5 year old ASD kid. He was diagnosed with autism three years ago. For the last three years, we tried many "treatments" including Andy Cutler protocol [chelation], multi-vitamins, Methyl-B12 shots, GFCFSF diets and various therapies. At one point in time, we were giving around 35 supplements and medicines per day. We saw some improvements for each of the above therapies. But they were MINOR.

My wife wanted to try MMS 8 months ago. But being a pessimist about autism therapies, I did not allow her to do MMS. I told her that it was too "dangerous." But four months ago, we decided to give it a try. The results are truly remarkable. My son is behaving like a normal kid. There are many improvements. We stopped all those supplements. Just MMS. He is doing great.

Being an Engineer, I tried to understand how MMS works on ASD kids. But after seeing the results, I don’t think of that any more. I have confidence now that we can completely recover my son soon. Before MMS, I had little hope.


-Now Hopeful Dad



Dear Now Hopeful Dad,

As an observer of the Cure Community over the last decade or so, I have seen a fair amount of things come and go. Some so-called treatments disappear, others just fall lower down in the noise level. But the most damaging of all the interventions I see touted is the one that starts, "Never Give Up Hope" and continues with "Try Everything."

If what you hope for is a cure, then my advice is to give that shit up. It is one of the most addicting and dangerous drugs I've ever seen. It leaves other dependencies in the dust. Parents who get their first high off it chase that feeling for years to come. They crash back to earth time and time again, but it doesn't matter. The euphoria it produced the first few times and the lure it dangles is so powerful that it trumps everything else.

Of course there are dealers out there who are glad to help. Like every other drug, it is trailed by both business and other junkies at every step. Fellow chasers encourage new parents to go farther, try harder, dig deeper. They trade stories of their best jags and convince new parents to try ever more bizarre things. The sad part is they think they are helping.

I don't know what has happened with your five year old son in the last few months. I do know that developmental bursts happen all the time. Natural growth and forward momentum and love and therapy all play a role. I also know that the time correlation between when you started using bleach on your child and the start of a period of improvement is so powerful that anything I say will be lost. The rush that comes from thinking your child may not have to have it so hard after all, that autism (and all that comes with it) is in your rear view mirror is an unmatchable high. What can I say to compete with that?

I will say it anyway, though. Our children need us to love them the way they are. We can find paths to the best possible lives for them. We do endless and indeed painful trial and error to find the right tools to help them access the world in a way that works. This may not feel as rapturous as the promise of a cure, but long term it is the real deal.

When a child is pronounced cured or “completely recovered” I have to wonder, why are their parents still in this group? Over the years I have heard from a variety of parents who tell me they have found "It." But they are still here because "It" wasn't "It" after all.

For me, "It" is education. How can I tailor my son's education to teach him what he needs to know, in a way he can access the knowledge? How can I teach others to be helpful to him in that effort? How can I help my community and the world to accept him, autism and all? And how can I educate myself to be his ally and his champion, but to step back when the path to excess beckons?

I'm not a Cure Chaser. You'll find plenty of those on the Internet, but I'm a Coper. And a mom in love. My son is brave, fun, surprising, and amazing as is. I bet yours is too.

-Susan Walton

Monday, October 14, 2013

Disability-Friendly Museum Days Are the Best!

Shannon Des Roches Rosa

I've written about disability-friendly museum days before -- at the San Jose Children's Discovery Museum, Palo Alto Junior Museum and Zoo, and San Francisco's Exploratorium, specifically -- and how awesome they are. I will be frank: my son does not go to children's museums except for during these special events in which the museums are open to a limited number of guests with disabilities and their families, the staff are trained to accommodate, there are quiet rooms to retreat to, social stories are prepared ahead of time to introduce attendees to the space, and he can focus on fun.

So I am grateful to San Mateo's CuriOdyssey (formerly Coyote Point Museum) for hosting a Super Families event last weekend, and hope they will continue to host these events periodically. My son, his little sister, and her friend got to have the best time ever. I'll let our event pictures speak for themselves, below.

Does your area have disability friendly museum days? If they don't, and you want to encourage them, send the staff our way -- we can put them in touch with some of the wonderful folks who have orchestrated these events.

And for museums and science centers that are not just for kids, well, we have some easy ideas about how to make such places more disability-friendly, too. :)

Enjoying exploring caves.
Making the biggest bubbles.
Free water and sand play is THE BEST.
Very very friendly river otters!
And ... quiet places to chill with one's iPad.
Always helpful.

Wednesday, October 9, 2013

Fish Out of Water

Lydia Wayman
autisticspeaks.wordpress.com

I take in a gulp of air and shut my eyes tight before I plunge beneath the surface.

One, two, three…

It starts to feel like my brain is tingling from the inside.

Four, five, six…

I’m not counting in seconds, not in minutes, but in hours.

Seven, eight, nine…

I search for anyone, anything who will ground me through my ever-increasing internal chaos.

Ten!

When given the cue, I cannot break the surface fast enough, gasping for breath. I’ve done this thousands of times, and yet, after twenty-five years of daily descents, I am no more sure that I will survive the next one.

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I’m really not a writer.  Writers have readers.  I write because it’s the only way for me to get from one day to the next without semi-spontaneous internal combustion taking effect.

I’m not a writer.  I’m a processor of the world, an organizer of experience, and, certainly, a weaver of words. Much like typical people have no need of the world to tune into their every thought as they learn and grow by connecting this neuron to that one and forming new pathways, it matters little to me whether others read the ways in which I develop my sense of myself and the world.

My memory goes back to before my first birthday. Prior to sometime much later, though, my memories are only sensory; I remember smells, tastes, and sounds … the painting on the end of my crib, my sister’s writing on the chalkboard, and smell of the air sanitizer at my daycare … but I really cannot remember almost any my thoughts and opinions. Without a way of processing the world and my place in it, I had no means of forming these memories.

I was an early and voracious reader. I had sight words in my second year and devoured The Hobbit in third grade. Yet, my language development was uneven; I asked my mom several years ago when I began to ask “how are you?” to other people, and she responded, “Lyd, we’re still waiting.”

I taught myself to type in fourth grade and took to instant messaging much like I take to cats and pink and Diet Mountain Dew. In middle and high school, I would form rather close friendships with kids in my grade online, but when we met in the hall or in class, I was absolutely silent. I didn’t understand why I had so much language ability … and yet, simple conversation evaded me entirely. I could lecture, for certain, and at home, my mom was either asking me to say something, anything, to anyone, or, conversely, for-the-love-of-all-that-is-good please stop chattering. My sister (to this day) answers my every conversational volley with either, “I can’t hear you! Speak up!” or, “Geez, Lydia, I’m right here!”

I kept no friends from high school and made none in college until my senior year. I met Leigh in late August, and one rainy evening in mid-September during which I had dragged her to the gym with me, she asked, “Hey, have you heard of Asperger’s?”

“Yeah,” I said. “We learned about it in one of my education classes; I think I have it.”

“Um, I know you do.”

Several months later, I met with a clinical psychologist who had oddly-perfect teeth and a heavily-gelled comb over. I left with a diagnosis of Autism Spectrum Disorder. It was January 7, 2009. I was 21.

My final semester of college began just a week later, and with it, so did the crumbling of my world. I had pushed so hard and tried to just be normal for so long that I simply, one day, could not do it another minute. The social and communicative demands of student teaching put so much stress on my atypical neurology that I became violently ill. After two weeks, I dropped student teaching in order to take an “alternative assignment” with more support, but upon doing so, I had to forego any hopes of a teaching license. My plans for the future had burst.

I stumbled and staggered through the months until graduation, every moment ready to fall over the edge and into total burnout. Rather than all at once, it came on gradually, and by the time I went home in May of 2009, I was a vacuum. Everything went in; I heard, I thought, I felt. Nothing, nothing came out.

Nothing came out … unless my hands were on the keyboard. It became my lifeline. I used it to communicate anything more complicated than simple questions-and-answers for over two years.  During that time, I also began to blog, and I was surprised when more than a few parents of children with autism were interested in my writing. I was able to articulate why autistic people do the things we do that strike typical people as downright odd. “Just as a newsflash,” I would say, “I think you’re odd.”

During the last two years, I have read dozens of books about autism and connected with others (mostly online, of course) who have it. As I learned how my mind worked and how I could make myself more comfortable in this world, I slowly came out of my shadowed state. My typing, mostly in the forms of blog posts but also in books comprised of short essays, emails, conversations, and texts, has been the lifeline that connects my brain to this world.  Every moment I don’t spend at my computer is like holding my breath under water.

I take in a gulp of air and shut my eyes tight before I go out for the day.

One, two, three…

I run errands with my mom.  Grocery store, Target, post office.

Four, five, six

Doctor appointment and drop off the dry-cleaning.

Seven, eight, nine…

The light, the noise is so overwhelming, it’s become unintelligible.

Ten!

Breathe.  I’m settled in my comfortable spot with my favorite blanket, with my fingers at home on their keys.

----

Previously published at autisticspeaks.wordpress.com.

Friday, October 4, 2013

Autistics, Media, and Misrepresentation

Paula Durbin-Westby is an Autistic advocate and an autism parent. She and her son recently appeared in the PBS P.O.V. documentary Neurotypical, a film meant to challenge public perceptions of Autistic people as well as allow Autistics to represent themselves. Paula’s portrayal in the final version of the film, however, was not at all what she was expecting. We talked with her about the distress of being publicly misrepresented as an Autistic, as well as her recommendations for filmmakers and other media types hoping to accurately portray Autistic experiences.

What was your goal in agreeing to be interviewed for Neurotypical?

My point was to counter pernicious media assertions that Autistics (and other people with neurobiological disabilities) are incapable of parenting and relationships. Unfortunately, I think the film’s portrayal of me has actually reinforced some of those assertions. 
I don’t have any problem with being shown as disabled, or as Autistic. I would be perfectly happy looking, sounding, and being disabled. Unfortunately, my disability is not shown in any substantive way, except for the fact that I am wearing headphones and I rock a little bit. 
I do have a problem with the focus on my marriage being so out of proportion to the amount of filming done, the things we had talked about, and the interests and goals I had brought to the film making process.
Ironically, I had actually asked the filmmaker to show some not-so-great things about autism, quipping “maybe an argument,” but I had no idea that my relationship problems would become the focus of my part in the film and that my marriage would be used as a vehicle for hooking interest in it. 
I had told the filmmaker, in an email the night before the filming with my husband, that I did not want to talk about my finances, though I ended up being the one to bring them up when my husband tried to blame our relationship problems on my diagnosis). Part of why I trailed off and did not comment after a while was that I did not want to continue the conversation or the filming of it.
I also thought that, if anything, those topics would be a little bit of my part, given that the filmmaker had told me that I would have a somewhat significant part in the film – and as my image figures significantly in its marketing materials. I never expected my part to be so hyperfocused on the marriage.
What are some of your other concerns about the way you’ve been featured in Neurotypical?
This film is not really about my life; it is the filmmaker’s creation. Since it does not have aspects of my life that I want in the film, since it implies things about my life that are not true for me, it is not about me. It’s not my story. It’s not about my life as an Autistic person. It is about the filmmaker’s vision for the film itself. He has been clear about that through both interviews with him as a filmmaker and the marketing material -- I have been assigned a storyline by the filmmaker: 
  • “Newly diagnosed” (not true at the time of the filming) 
  •  “Coming to terms with her diagnosis” (not true at the time of the filming)
  • “Disintegrating marriage,” (true, but featured disproportionately)
  • Bubblydaydreamer forced to deal with financial anxiety” (where on earth do they get “bubbly daydreamer?!” and why do they use it in marketing material?)
  • The “success of my marriage” hinging on the agenda-laden question of whether or not Autistics and neurotypicals can have fulfilling relationships” rather than also including the facts and my point of view about the finances (which the filmmaker did have access to, via my emails to him, and through what I actually said in the film).
  • Using what my husband said as “my” story! He actually has more words than I do in the movie, the marketing materials, and the “lesson plan” questions. The “lesson plan” is materials based on the film that are to be used in middle schools, high schools, library discussions, etc. 
So, my part of the film is not the “point of view of Autistics” after all. All of that storyline about the marriage was made up by the filmmaker and PBS, and I think made all the more harmful by using just that bit of the actual footage.

And why does Jonathan Mooney, who wrote “The Short Bus,” who is not even Autistic, get to talk over me in the film? Why don’t I get to talk about neurodiversity and my own neurology? I realize that it’s a film technique, a voiceover thing, but I really do not appreciate it, given the fact that I don’t, for example, do a voiceover over someone else. 
Mooney is held up as the expert, whereas my own voice about neurodiversity and disability rights activism is effectively erased. So the film does me no good in the “disability job market sphere,” either. The only people who know what a good public speaker I am at this point are people at Autreat and a few other venues at which I have given presentations. I will say that the hosts at various places I have spoken have commented that I am a good speaker and engage well with the audience. 
Also, in the film I don’t talk about autism. I talk about my diagnosis, which is something I am not interested in talking about, but which is the one thing that non-autistics always want to know, so they filmed me explaining that to them. “When did I get a diagnosis, am I self-diagnosed?” Autistics meeting each other or getting to know each other typically don’t even ask about a diagnosis. It’s not that interesting, actually. Talking about when one got a diagnosis is not the same as talking about autism.
It did not help after all to mention that my problems with my husband were financial, because now film viewers get to weigh in on whether or not they believe me. An autism expert was invited to an online screening by PBS. This is what she had to say: 
“This scene is interesting in that once autism is labeled, they have an ahha [sic] moment, the person isn't just odd. And with this couple it took a turn for the worse.”
Nothing I have ever said about my financial situation has been a lie. But now, everyone who sees the film gets to decide whether or not my relationship issues were due to autism or finances. I am trying to raise a child and pay a steep debt, and it only damages my situation further for people to be commenting about it. In order to make sense of what I mean by steep debt, the cost to me is about $280 per week for the next 14 years, and I will have been paying that for a total of 21 years. This is $280 a week for a disabled person who works two part-time jobs with no benefits.

What would you change about your participation in the film?
In earlier correspondence with the filmmaker’s production team, I got responses saying they were not going make some of the changes I had requested at that time, so I stopped corresponding with them about the film. I stopped trying to get the filmmaker to take out the blurbs about my marriage because I did not think I could -- which was obviously a mistake. So the misinformation on the filmmaker’s website went on for several years, and also appeared in reviews, which I did not catch until I started looking for them. Certainly no one sent those to me; I think they might have been hoping I would not notice them.
PBS and the filmmaker finally did make some of the changes I requested. But this was only after I got through to someone at PBS, only six days before the film aired, after a couple of years of the film’s being marketed using damaging material.
The material PBS finally removed was exceptionally objectionable. It directly implied autism in the “success” of relationships with non-autistics. The film was aired on July 29. On July 22, some of that egregious material still remained, and I had to contact PBS and the filmmaker several times to get it all removed.
After the film aired, I continued to look for mentions of it online. I found that on the resources page, PBS had listed an anti-Autistic group, and had NOT listed the Autistic Self Advocacy Network (ASAN), www.autisticadvocacy.org. I wrote the following to PBS:
“One of the reasons I wanted to participate in this film in the first place was to promote the Autistic Self Advocacy Network, because I was working extensively with the organization at that time. It is a bit odd that this important organization did not make it onto your list of resources. I guess I should not be surprised, but I am. Ari Ne'eman, the founder of ASAN, has been on the Interagency Autism Coordinating Committee (IACC) and was the first Autistic person to be appointed to the National Council on Disability. People need to know our history, and you can't talk about our history without talking about ASAN.”
I do want to say that PBS and the filmmaker have worked with me, but it feels like too little, too late, plus their link fact-checking has been sloppy or nonexistent, so I am the one who constantly searches to find the bad stuff and report it to them. I know that they did not want to make me uncomfortable, but the film was already out there, with the marketing, and the links, and they were not able to think through or understand the negative impact it would have on me.
Some people might think I am insisting on too much, but as long as I have to be in the film and have my image all over the place, I am going to have a say in what they put on their site.
How has being mischaracterized affected you personally?
Heightened anxiety and stress. Some people might think I am this stressed out because, well, Autistic people just get stressed out. But my anxiety about this film goes FAR beyond my typical level of stress. It is almost as bad as the stress I had when my husband pressured me into refinancing the house when I did not want to. 
I experienced anxiety when I first saw the PBS promotional material that singled out my husband’s comment about “Where’s the accountability?” and did not include anything I said, the Autistic person’s point of view that the film purports to show. The marketing material has constantly focused on my husband’s feelings about my diagnosis, claiming that I am unaccountable, that I have a new sense of “entitlement” that threatens the marriage, and other unsubstantiated misinformation. 
I experienced a great deal of anxiety when I saw an “interview” I had not actually done, and finally figured out how it happened. I did not interview at all, but something I sent to the filmmaker was copied and pasted into an interview I knew nothing about. The interviewer claims she “got a chance to speak with me” but I never did communicate with her at all, nor was I asked by anyone to be interviewed. 
And, I experienced such anxiety that I stayed up for 27 hours the day I found that PBS had linked me to one of the anti-Autistic groups I have spent significant time countering over the years. PBS subsequently removed the link.
This is not my typical anxiety, which is at a much lower level (although fairly constant because of the permanent money problems). 
If I start thinking about how one of the autism hate groups might use the film, I become extremely anxious and so I am trying to not think about that possibility but to make plans to methodically do searches for instances of this, if they ever exist, and to quit blaming myself, which I can’t seem to do yet.
If this sounds like I am being “ungrateful,” do remember that I do consider most of the footage of me to not be doing me any favors, but to be causing me problems, some perhaps unforeseen, like what will happen now that the film has attracted the attention of people whose “work” against people with disabilities I have countered for years. After the film was aired on PBS, I checked every few days to see what was being said about it (and me, unfortunately). During this time I found things like the “interview” I never did, links to opinions about autism and about me and my family that made me cringe, and this kept me up a lot of nights being very anxious. 
As an aside, the irony of my husband asking where the accountability was … I was being accountable by working overtime to pay bills. That’s why I learned I was Autistic. I was taking on so much extra work after the refinance that I was working as fast as I could on an extra book about psychology, which is where I saw the term PDD-NOS and almost did not even look it up as it did not need to go in the index, and I was working against the clock to get the “extra” work done so I could pay bills.
How were you expecting to be characterized in the film? What did the film miss about you and your work?
I was expecting more about parenting. I even sent an email to people the day after the filming, saying how excited I was that positive aspects of Autistic parenting would be shown. And I do like the footage of me with my child, but my parenting is not even broached in the film other than seeing me with my son a couple of times. Why wasn’t my being an Autistic used in marketing materials? (Or anything other than that marriage stuff?) I don’t get to say anything about autism or neurodiversity much, except for that bit about Ari telling me, in the first email I ever sent to a group of Autistics, that he did not hide his neurology and he let his actions speak for themselves. That’s a nice bit.
I was also hoping to see some of my autism and disability advocacy work. Jim Sinclair, founder of Autism Network International (ANI) and Autreat viewed the film and told me, in private correspondence, but they interviewed you and had nothing about any of your other advocacy work at all!
Some people have said, in response, “Well, it’s not a film about advocacy.” But since advocacy work is a big part of my life, and this is purportedly “my point of view,” you would think that at least some of that material would be used. And, it is a film about advocacy. Of course it is. It does not go into details about specific advocacy initiatives, but other people in the film comment extensively about the neurodiversity movement, which is about advocacy. 
At the end, the credits do say that I am on the Board of the Autistic Self Advocacy Network and that I advocate tirelessly for disability rights. But nothing of that comes across in the film. Hopefully people are reading the credits and not getting up to get snacks at that point.
Because I smiled, and did not look serious, one reviewer interpreted that as me not being able to deal with reality. That’s the guy who called me a “bubbly daydreamer.” I realize that the film was made for neurotypicals, not Autistics, but really, there’s a lot more that could be said about autism, and I think I must have said something about it in all that filming, something that might be geared toward Autistic people. To code my smiling (which neurotypicals often complain that we don’t do enough of!) as “airheadedness” ensures that I won’t be taken seriously by anyone reading that review. That’s the blurb that was used to make the promotional material, by the way. 
I was also expecting to be in the film more, given that I was told that the film followed three people, one of which was me. In the original 88-minute version, I did not come into the film until over 2/3 of the way through, and then it was to primarily focus on my marriage. Because I am not in much of the film, I don’t know how it can be said to “follow” me. I would think that a person who does not come in until most of the film is over really should not be the focus of marketing, but it’s fairly clear why that happened. The story of a failing marriage where autism is called into question sells films. It sold this one to PBS.
What are your hopes for how the film will be received, given how upset you are about your characterization?
The best thing I can hope for from this film is that it does not have much of an impact and that people forget it. I really hope that at some point I will forget it. I try to already; it makes me feel so anxious that I try to put it out of my mind except when I am checking to see what new things have been written about it (which makes me more anxious, but I do want to see what is being said). I have not been able to promote it at all. Why would I do that to myself?!
I am even hoping that some day the filmmaker and PBS will decide that, since they can’t market it using my marriage any more, there is really not that much of a point of having me in it, and do a version that takes me out completely. Since I did not come in to the original until more than 2/3 of the way through, I imagine they can just remove my section, leaving most of the film intact.
What do you want other Autistic or autism community interviewees to learn from your experience? What do you want interviewers to learn?
Autistics (and parents) are a vulnerable and inexperienced source and need to be safe when being interviewed for movies, magazines, etc. We need to change the paradigm about how people talk about us and use our lives to make their livings. 
Solutions include having the right to view and decide about material used up until final editing of the work. This “takes power away” from journalists and filmmakers, but it is more honest. Sacrifice a bit of your power over your informants/subjects in order to achieve an outcome that will be desirable for all.
I do not think that the Filmmaker Knows Best, just because that is the person who was making the film. I think the filmmaker did not think through all of the implications of me being presented in this way, any more than I was able to. Other people, including other filmmakers, have tried to tell me that this filmmaker is my ally. I don’t think so. Too much has gone wrong. He is a nice person, but he does not know how to represent me or my point of view, and some of what he has said about me in interviews is questionable at the very least.
I am also concerned that people too easily confuse the idea of filmmaker as an artist with that of being an expert on the material being filmed. A horrifying example is notorious autism pseudoscience proponent Andrew Wakefield’s partially completed documentary ”Who Killed Alex Spourdalakis?,” which is titled as though Alex’s murder is some sort of conspiracy, even though his murderers -- his mother and godmother -- are well-known and in jail with no bond.

--> Seeing people take filmmaker’s versions of stories as truth is especially distressing because of the recent spate of murders and attempted murders of Autistics and disabled people. Very shortly after Wakefield’s film’s claims that Alex Spourdalakis died due to lack of Wakefield-approved “supports” was promoted via an “investigative journalist” at CBS News, another parent attempted to kill her child, prompting speculation that the attempted murder was a copycat crime.

I am not the only Autistic person distressed by a filmmaker’s misrepresentation. Sharon daVanport, a fellow Autistic advocate and activist, had this to say about non-autistics interviewing Autistics:

Paula and I have discussed our disappointing film experiences in detail and we've been a source of encouragement to one another – it’s good to know you’re not alone when you’re feeling traumatized. As she already explained, filmmakers have a responsibility to represent their film subjects with accuracy. When filming people with disabilities, that responsibility means extra care and consideration -- especially with respect to communication challenges that might very well be discovered after the filming. Neither Paula nor I were offered such consideration.
"Like Paula, I found that the director of the film my children and I participated in did not take my concerns about accurately representing neurodiversity seriously, and he went so far as to use shaming-language in an email after I shared my concerns, he said, ‘You should listen to yourself. You're pinning yourself into a corner by trying to live up to these standards of what neurodiversity is in your mind.’

"That’s right, he attempted to tell me how I should think about neurodiversity -- even correcting my own thoughts about neurodiversity. I'm still in shock at his audacity about that one.

"So this is what I have learned, this is my takeaway: I will only participate in interviews where questions and an outline are presented to me ahead of time. Though not a guarantee against future edits, this option at least has a better chance of ensuring accuracy. I don’t naturally process spoken language in real-time, so any answers I provide to someone in an interview, will, in all likelihood, require editing in order for the truth of my thoughts to be conveyed in the final product. Working with a director who honors that access need and is willing to put it in a signed agreement is imperative to a project’s integrity.

"I learned this lesson the hard way: our words are immortalized when recorded, and anything less than our true experiences should not be preserved. If directors and filmmakers are not willing to provide individual access needs to people with disabilities, and they don't further ensure it in writing before filming, then I recommend reconsidering participation.”

Yet people say “You should have thought of that” and place all the responsibility on you.

The filmmaker or PBS or the marketing people who were hired by the filmmaker to come up with materials should have considered my precarious financial situation and the fact that I am disabled.
Even if some of my worst fears about the film’s potential for damage to my community never materialize, the negative effects on me personally have been profound. Even without one more disturbing thing happening.

People have told me that I am in this for the long haul -- the film is out there. Negative things will be said or implied about Autistic/non-autistic marriages/relationships. Even PBS and the filmmaker did that before I put a stop to it. 


I can envision having to live with the fallout from this for a long time; and even if I don’t personally, other than how it is affecting me now, it might be used against some other Autistic person and I will never know it. That (and the financial concerns, of course) is what keeps me from sleeping well, or at all. 

I want to apologize to anyone and everyone who might be negatively affected by my participation in the film. I have publicly apologized to Autistic people on my blog, and in person at Autreat (which was both a heartfelt and a symbolic, in-person apology to ALL Autistics), for anything negative about autism and marriage that might come out of this film. This apology is not intended to excuse myself for anything that might make it harder for other people but to acknowledge and take full responsibility for my part in it.