Monday, February 13, 2006


In the last week, the internet world of autism has gone a little crazy reacting to comments made at a film festival in Berlin. The comments were made by the people responsible for making a new movie called Snow Cake. Apparently the main character is an autistic adult (played by Sigourney Weaver) whose daughter is killed in an accident after hitching a ride with an ex-convict (played by Alan Rickman). It sounds like an interesting little movie with two of my favorite actors.

Most of the present controversy stems from comments made in Berlin by Ms. Weaver, who reportedly spent several months researching her role:
“I think we have to begin to see it as a gift,” she told a news conference. “We may not understand what it's there for, but if you're in the presence of someone with autism you learn so much. You learn how to play, you learn how to see things, you learn how to experience things and how jarring the world is.”

The reference to autism as a “gift” seemed to push a button for a lot of people, but to a limited degree, I can agree with that characterization. Responding to my little one’s autism has made me learn to exercise patience beyond what is required of other parents. It has opened my eyes and made me a better father to all my children. Part of the “gift” is being able to celebrate little milestones each day that other parents take for granted: for example, that first three-word sentence, years after other children of similar age.

But sometimes a gift comes with a catch. The “gift” of autism has a lot of catches. It not only keeps on giving; it keeps on taking. There are the countless trips to doctors and therapists, the endless fights with the health insurer to get even some of the “mainstream” treatments covered, the constant fights with the local school board to get services for your child that are needed for a “free and appropriate public education,” and the sleepless nights spent worrying about what’s to become of a child that might never be able to function independently.

Most of all, though, watching one’s child grow progressively frustrated over the years as he grows intellectually but not emotionally, and as he can’t find the words to express what he is feeling, makes it a gift that one wishes could be returned.

I think the part of Ms. Weaver’s quote that caught me most off guard was the reference to learning ‘how to play.” One of the challenges that face most autistic children is that they really don’t know how to play; her comment seemed incongruous at best. Then I came upon other comments Ms. Weaver made in Berlin, and it started to make a little sense. In another interview, the actress said, “It took me a long time to even understand how to prepare for this part because every person with autism is so unique, and to find someone like Linda [her character in the movie] took a long time.”

Even the realization that autism is unique for every person, however, does not seem to have completely kept Ms. Weaver from overgeneralizing our world. The following is from an interview in the ABC online site called Articulate:
Q. . . . what’s been your most challenging film part?

A. I have to say maybe this one because I so felt a responsibility to get it right: the physical behaviour, the sense of when you have and don’t have control. I felt a big responsibility not to do anything general and that’s really what I was thinking about ⎯ that and how to interact with the other actors without interacting with them, without any eye contact at all.

Q. For a lot of people, Rain Man is the classic film about autism. Was that an obstacle for you in making Snow Cake?

A. Our story is so different. I think they made a wonderful movie but one of the frustrations I heard expressed very often from anyone on the spectrum [of autism] was they’re tired of Rain Man being the definitive expression of what it is to be an autistic person since every autistic person is so unique… I just think it’s such a big subject. There can certainly be plenty of different stories that reflect on that and there’s time for there to be more. I don’t think it intimidated us because it’s not about autism and that’s not our focus. But I did want to be as accurate as I could be and I was lucky to have a lot of people help me and to find a couple of people who were very like the character.

Q. In the film, your character seems at first to completely lack a sense of grief for her dead daughter. How did you deal with that?

A. I think there’s a real lack of sentimentality about death in the autistic community… it’s not a lack of feeling but it is a kind of acceptance of it as a fact. It’s not something get, I can’t really understand it, but I tried to play it as accurately as I could. I can’t really get it because in my experience, people with autism do make connections. I have a couple of autistic friends and I talked to one of them yesterday and she said, ‘It’d be really great to get together for a weekend or something,’ and I said, ‘yeah it really would,’ and she said, ‘yeah, and do some serious playing’. And I thought that was so cool because I miss playing ⎯ you don’t get a chance to play, you have to really consciously play. That has to be a priority and that isn’t for most neuro-typical people.

Although Ms. Weaver understands how unique and individual each autistic person is, she bases her perceptions of autism on people she met who are most like the role she played in this movie: high-functioning adults. Unfortunately, not all autistic children grow up to be like that.

I suppose I should be happy that the entertainment industry is beginning to learn that all autistics are not like the little boy who dreamed up several seasons worth of St. Elsewhere or Dustin Hoffman’s character in Rain Man. That those stereotypes are harmfully ingrained in the public’s consciousness is shown in an early review of Snow Cake, in which the character’s autism is dismissed as being “the kind of literary autism that allows her to make sagacious observations and funny remarks.” Obviously, that critic’s exposure to high-functioning adults with autism or Asperger’s has been limited.

So yes, I’m happy that we’re starting to see characters that show another side of autism. My concern is that we may replace old negative stereotypes with new but equally unrealistic ones if statements like those attributed to Ms. Weaver are taken as showing the whole picture.

It certainly doesn’t help that the film’s writer, Angela Pell, has a particular viewpoint that seems to exclude any other experience of autism:
Pell was inspired by her own autistic son Johnny, who like Weaver’s character in the film loves to eat snow and bounce up and down on a trampoline.

“I wanted to write a film that showed that sometimes living with autism can be harrowing but that actually most of the time it’s really good fun,” Pell told reporters.

Did she really say “good fun????” I’m not sure if Ms. Pell is referring to living as an autistic or living as the parent of an autistic child. But my experience is that the joy in life I see my son express is too often overshadowed by the frustration of trying to deal with everyday life. Likewise, my own joy of being around my little boy ⎯ and it is great joy indeed ⎯ is tempered by the pain of witnessing his frustration. I would never say that “most of the time it’s really good fun.”

In the end, what might make this film palatable for me is the viewpoint of the film’s director, Marc Evans, as stated in the Articulate article:
You know, I don’t think Rain Man was solely about autism. It was about the 80s, it was about Tom Cruise’s character and his greed. Although, in the same way, autism plays an important part in Snow Cake, it’s not about autism. It does seem to be about grief and dislocation, which seems to be a sort of theme that penetrates a lot of films now. I think it’s to do with our generation not being so hopeful or not having things to hang on to which get you through life, so when something like grief or depression or divorce or any social problems come up, there seems to be less of a network, either social or familial, to get you through it … I think in our end of the world, where you’re not dealing with more visceral problems like poverty or war at the moment, these are concerns of the way that we live our life right now.

. . .

. . . this film is really off the radar for an American studio ⎯ it’s about somebody with a mental illness, it’s about somebody who’s grieving, it’s not satisfyingly redemptive at the end . . .

Maybe Mr. Evans’ outlook on autism is not as upbeat as Ms. Weaver or Ms. Pell, but he seems to be telling us that autism is not the be all and end all of the movie or of life itself. That view does not really comport with the reality my family lives with on a daily basis: a life where autism does dominate our lives. Still, I still find Mr. Evan’s words more comfortingly positive than the stereotype of a happy and playful autistic that is too far divorced from reality.

I want to see Snow Cake before I judge its worth. As for Ms. Weaver, I plan to go on enjoying her work regardless of my opinion of her comments or the film itself. I just won’t be referring to her as an expert on autism. I’m reminded of what our friend, Mary Webster, wrote in talking about the absurd notion that the autism world, and the biomedical community in particular, needed a celebrity to tout the cause: “Do we want to live in a society where an issue MUST be addressed on a certain talk show or touted by a celebrity to facilitate social change? Gads!”

I really don’t believe that many people let celebrities form opinions for them. The most that might happen is that a celebrity’s words or presence may draw attention to an issue. As wrong as any of the particular statements are that have been made by the film’s principals, this film may draw attention to our world so that we (meaning parents and autistics of various opinions) can help better inform those that just don’t know. At least, that’s what I hope.


Anonymous DaveSeidel said...

Wade, thanks for the thoughtful article. I was amused to see the somewhat frenzied reactions on the EOHarm list, all of which ignored the facts that the movie was written by a fellow parent, and that Weaver had spent a considerable amount of time with autistic people in researching the role. It's amazing that some folks are so dead-set against looking at autism in anything approaching a positive light, and seem to be so incapable of admitting the possibility that anyone else's experiences are valid. Thank you (again) for providing some nuance.

As for the movie itself, I will withhold judgement until I've seen it myself.

2/14/06, 8:23 AM  
Blogger Wade Rankin said...

Nice to hear from you Dave. Frankly, I understand all too well why my fellow members of the EoH list got so agitated by the comments. When one spends so much time dealing with the everyday difficulties that often come with the autism package, one does not particularly like to hear words like “gift” and “fun.” For many of us ⎯ and more importantly, for our children ⎯ autism just ain’t a whole barrel of laughs.

Having been misquoted by the press myself in the past, I decided to look for the “nuance” in that first story that came out. I understand that the principals in this movie were speaking from their own experience in the autism world, and I can accept that. My problem is the presentation of their apparent views (and I use the word “apparent” because there can always be room for doubt when it comes to accuracy in the media) as THE autism experience.

Ms. Weaver and Ms. Pell can no more describe the autism experience for my family than I could for you, Kathleen and your child. I love the use of the word “nuance” in your comment, because it is so perfectly suited to the world of autism. Every autistic’s life has different nuances to it.

I suspect that Ms. Weaver’s portrayal in this movie will have an underlying truth for that character. For that matter, so did Dustin Hoffman’s character in Rain Man and the character of Tommy Westphall in St. Elsewhere. Despite that honesty of portrayal, however, I would not want any of those characters defining the public’s consciousness of autism. I will be happy if this film spurs a public discussion in which we can all explain the impact of autism as we know it.

2/14/06, 2:39 PM  
Anonymous DaveSeidel said...

It's certainly true that no movie can ever reflect the full range of autism, from either a subjective or objective point of view. Movies can only provide a view that is narrow and filtered compared to actual experience. But I think people tend to take what they see in a movie and accept it as representing reality, and that's a problem.

We need to remember that a movie, like an interview, is just a reflection of a particular point of view, and any subject as complex as autism can only be considered through multiple points of view. It would be just as bad to embrace this movie (or the other examples you cited) as representing autism as it would be to completely reject it simply because it doesn't happen to match one's own personal experience. That's why people (not referring to you, Wade) need to calm down a little sometimes and consider that they don't have a monopoly on the truth.

2/14/06, 2:59 PM  
Blogger Kristina Chew said...

"Gift" means poison in German. It's a lopsided exchange and a bit of a starlet's attention is the icing on the snowcake.

Froth that melts under candles.

2/14/06, 3:11 PM  
Blogger Kristina Chew said...

This comment has been removed by a blog administrator.

2/14/06, 3:12 PM  
Anonymous shawn said...

Wade, this comment struck a chord with me:

My problem is the presentation of their apparent views as THE autism experience.

I think the problem is that there's only been two mainstream presentations of autism and most people forget about the one on St. Elsewhere (great show!!) anyway. Rain Man was a very narrow depiction of autism. This depiction will also be off for a lot of people. If Mozart and the Whale ever finds a distributor, it will also not be the right depiction for a lot of people.

We need more and more of these depictions, even if they only present a narrow view. Collectively they should paint a broad picture that shows many aspects of the autistic spectrum. Individually they are not much more than single brush strokes in that bigger picture.

2/14/06, 9:25 PM  
Anonymous Terri Lewis said...

Hi, I'm a fairly new reader and mother of three, including a boy who is emerging from a place of really disabling autism.

One comment struck me, and I had to respond:

"Most of all, though, watching one's child grow progressively frustrated over the years as he grows intellectually but not emotionally. . ."

I wondered if you are familiar with RDI (Relationship Development Intervention)? This is something (among many, many other things) we are doing with our son. After about a year, we are seeing some emotional and social growth we had almost given up on ever seeing.

We are not in any other way affiliated with RDI -- only as parents who have used it to help their son's emotional growth -- so I hope it's okay to simply mention the website here:

I'll have to look over your archives to get a better handle on your thoughts and what's going on here; but I felt moved to share this little bit of info.

Thanks for sharing your experiences!

Terri Lewis

2/18/06, 5:26 PM  
Blogger Wade Rankin said...


Thanks for stopping by and leaving a comment. I hope you find the other discussions on this site interesting.

In general, I try to avoid discussing too many specifics of what we are doing for our son -- and that goes for both biomedical and behavioral interventions -- because I feel the answers are different for every autistic child. That being said, RDI has proven to be helpful for many families.

Please let me hear more from you.

2/18/06, 10:35 PM  
Anonymous kyra said...

wow, wade, what an amazing post. thank you for that.

2/19/06, 10:11 PM  
Anonymous John Johnson said...

Wade, your respect for individual differences far exceeds that I've seen just about anywhere else. Thank you for that.

2/20/06, 8:41 PM  

Post a Comment

Links to this post:

Create a Link

<< Home