Richard and I finished up our “staycation” by watching the Oscar nominated short documentaries at the IFC Center (Independent Film Channel) yesterday. As I watched them I thought about the documentary I would most like to see. It would be about Autism and Autistic people. It would go back to Lovaas and Hans Aspergers, then Bettelheim, the evolution of what we thought we knew about Autism and those who are autistic and the ways in which we thought to “treat” it. It would cover the move away from institutionalization to the current, though still negative thinking regarding the neurology we call Autism. The documentary would have dozens and dozens of Autistic people of all ages, non-speaking, speaking, sometimes speaking, those who have careers, to those who are unable to work to those who work for themselves. It would look at functioning labels and address why those labels work against everyone, it would cover the various myths surrounding autism and why those myths are ultimately destructive and limiting. It would be a collaborative effort of Autistic and non-Autistic people. It would be an example of what we can create if we work together, regardless of our neurology. That’s the documentary I would like to see made.
Short of making such a documentary myself, I won’t hold my breath, though. The whole idea of neurodiversity is considered radical and even threatening by many. I understand that. I understand that it is not a popular or particularly good way for organizations to raise money, especially those whose main goal is to fund research for treatments and cures. I understand that change happens slowly. I understand that any movement involving the rights of a minority moves slowly before it is embraced by more than a radical few. But I also understand the power of good film making and that it can reach many more than any written piece could…
If you could see a documentary about Autism and Autistic people, what would it cover?
Em – 2003
I like this idea. I’d make sure the formation of ANI, Autreat, and eventually ASAN/Loud Hands gets covered in there.
Absolutely! Am putting out feelers…
It would be good to see Autistic people talking about how they experience autism to counter the whole “locked inside”/regression/trapped/not self-aware stereotype. Also, a balanced presentation of the strengths and challenges people experience and how autism both changes and persists as we grow older. Something about how learning to cope/learning to pass/adapting is different from being cured and how that comes at a cost (not necessarily in an entirely negative way, but it still costs us). Also touching on the idea that autism is not linear in terms of getting better or worse – we have better/worse days or periods in our lives, just like everyone else.
Love all these ideas. Yes, that idea of autism being fluid and how things change and a balanced view with a look at the achievements, because now even when the focus is on strengths it is clouded by the perceived “deficits”. I don’t think I’ve seen anything about the concept of “passing” and what that really means. That’s important to discuss as well.
Hmmm, I might write something passing. It’s something I have lots of experience with–I was going to say doing, but it’s probably more like trying to do.
I would really love to read whatever you write about it. It isn’t something people spend much time discussing at any length. I don’t know that most non Autistic people even really understand why that might be a problem. Again they are viewing this from their specific neurology and aren’t considering what the repercussions are.
I’ll add it to my list of topics to tackle. 🙂
Laura Nagle’s file Vectors of Autism is showing at the Sedona Film Festival this week! I realize it doesn’t cover all of the things you listed above, but it is a start. http://www.lauranagle.net/Film.htm
Love Vectors and Laura. I’ve blogged about it and her a number of times. So glad it’s playing at the Sedona Film Festival!!
oops I meant film, not file
I like your idea for a documentary, but in the history of autism, I would like to include more than those who were labeled “autistic.” Autism was 1/10th what it was today, which means that 90% of people-who-would-be-called-autistic-today people were called something else. Eccentric or retarded or schizophrenic or hysterical. Some passed for normal… how did their lives go? Many did not… what about theirs?
That’s such a great idea. It would be really incredible to find some of them and learn what happened.
All great ideas!
Agree…I really think the researchers and “experts” have it all wrong.
I’d love to see this come to life. I’d also love to see it include how people with Aspbergers and Autism function in society. My partner was diagnosed with Aspbergers as an adult, and knows all about the history of treatment from a personal perspective.
While much of what he went through wouldn’t happen now, I think the autism spectrum is still very misunderstood. I’d totally agree with Musings of an Aspie’s comments btw, I don’t believe it is about cures and treatment.
We (my partner and I) function quite well even if there are challenges, and frankly, I wouldn’t trade him, or CHANGE him for the world 🙂
It’s interesting that this really hasn’t been addressed much, this idea of what are the ramifications to the person who has spent their life trying to “pass”.
I would love to make that documentary. Working on Vectors of Autism with Laura Nagle and Susan Marks was a wonderful collaborative process. The three of us always had an open dialogue about what our message was going to be and what themes we wanted to address. It’s really not “a documentary about Laura Nagle” but a documentary with Laura Nagle.
In the movie we wanted to show more of the broader spectrum of autism and we are very thankful that the Andersons (and Turrell) and Kyle and Eric agreed to be in it. I would have liked to have a more expanded perspective on their lives, but time and budget (and length of movie (it turns out it’s kind of long for a short and too short for a feature)) didn’t allow that.
Wild Asperagus Productions definitely wants to build on the advocacy and success of Vectors and make even more ambitious movies, with a higher production value (and budget) which can reach a larger audience. This will take collaborating with some other very talented people and different neurotypes. There are so many more stories to be told…
John, the documentary you made is wonderful! I hope you didn’t think this post was directed at you! I love Vectors, as you know, I’ve written about it on this blog several times. Congratulations on getting it to the Sedona Film Festival. Many, many documentaries can and will be made regarding Autism. These are just my ideas for the one I’d like to make or see made one day!
I’d like it to show how famillies like ours are living in joy with kids like ours. I mean, there are days that challenge each of us, as Musing… expresses, but I wouldn’t trade Mackie for all the tea in China. He genuinely saved me at a time in my life that was difficult and bleak – he forced me to plunge in headfirst and try to trust my instincts over what other people keep trying to tell us to do. We still struggle with that curve, but reading your blog has helped remind me of the fumbling beginnings…I think that the heart of any parents’ desire to do things for their kids is centered on wanting their lives to be the very best they can be. Sometimes that results in incredibly skewed outcomes, or passionate belief in miracles, or grasping at any therapy that seems to hold promise. Sometimes we “NT” parents make big mistakes – sometimes we get sucked in by interventionists and school systems making promises that nobody knows the real implications of – that’s the heart of where I think we need to get at, and yes, destroy the “disease” model, along with “cure” – I can honestly swear with all my being that I have neverr believed that. Not one day. I saw Mackie showing signs of his autism by about 7 months of age – and probably would have seen it earlier if I’d known more – he was born the way he is, made this way by some amazing tweak of…whatever it is. I could go on forever, I guess, so I’ll stop myself, because I should be editing and finishing a book….but I feel passionate about this. I’m trying to get my husband on board completely (because he despairingly falls into the “he’s getting worse” trap) – so please, everyone keep commenting – you’re all amazing, and give such insights, and hope that we can find the right means for our kiddo to express himself.
Oh thank you so much for this comment. Whew! That’s it. What you wrote here, I feel the same. My daughter is indescribable and yes, she “saved” me. It’s such a different way to express love and admiration and adoration, but it’s what I too have felt. It is what I too believe.
BOOK? I want to know about the book you are writing! If you are comfortable saying something about it, do, I’d love to hear!!
I have one I’ve finished, and self-pub’ed on amazon first of a series, and the next one is the first in its own series. I write fiction, a little bit in fantasy, a little in history, a little in the future…I’m hoping that it will eventually subsidize me being home (well, I’m home now, but maybe it will make up for me not having worked in 11 years, lol)…love writing…I’m way more comfortable doing that than talking! I’m not shy about sharing the link to the amazon book, but I wouldn’t do it unless you gave your approval 🙂
Please share the link!
I didn’t think you were directing it to me nor do I think you were suggesting we didn’t do enough with Vectors. We are already considering our next project and looking for good ideas and collaborators. I read your post and thought, you don’t have to hold your breath, there are filmmakers like me, and lots of others, willing and ready to make such a documentary.
Love the idea!!!
Jill! We will talk! What did you think of the documentary shorts? Really interested to know which you liked best and any prediction on which will end up winning?
I just scanned these comments, so if this was already addressed, apologies for the repetition. I would suggest that some attention be given to non-autistic siblings of autistic family members. The shift in family dynamics to accommodate the special needs of an autistic child is certainly warranted, but it is also necessary to support the sibs. As a sibling of a low functioning, profoundly retarded, autistic, nonverbal brother, I know this to be true. My parents were alert to this fact and did their best to address my concerns, even though it was the 1950s. During those times, there was very little support available and the psychiatric establishment blamed the ‘refrigerator mother’ for the plight of their children. Thank goodness there is more support today, but don’t forget the siblings.