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

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

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

  • “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. A
n 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), 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

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

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

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:

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

“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.

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. 

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.