Laura Nagle is an self advocate on the autistic spectrum. She has given various presentations on autism over the past five years, particularly on topics related to educating others about autism and promoting the civil rights aspects of neurodiversity.
Elesia: Tell us more about how this film came to be. Were you approached with an idea for this project, or did you envision this project and seek out the necessary folks to make it happen?
Laura: I discovered that I am on the autism spectrum when I was 53. I found the Northern Arizona chapter of Autism Society of America and got involved. Soon I was doing panels and presentations. My mentor, Susan Marks, eventually asked me if I would be interested in doing a documentary. I agreed! Lots of people were involved with the production, and filming took over a year to complete.
Elesia: You did a thorough job of summing up sensory sensitivities in the movie. Please share with us again how clothes can feel like sandpaper or broken bits of glass, yet a gash or a deep cut could go unregistered by someone on the autistic spectrum.
Laura: One of autism’s hallmarks is that of sensory differences. To adequately describe our differences is not even possible, as the differences would have to be experienced to be understood. Nonetheless, I will use hearing, even though hearing is not the only sense in which we are different from others.
We can have extreme hearing sensitivity. An audiologist once tested me, and she found that my hearing extended into high frequencies well beyond that of anyone she had even read of.
On the other hand, my hearing is better suited for identifying and tracking sound than for understanding human speech. I have a hard time with comprehension, and the huge amount of data I process can be fatiguing.
Autistic people can have reduced sensitivities, even in a sense in which we have heightened sensitivities. While my clothing can be akin to the wearing of sandpaper and tourniquets, I can have my teeth drilled without anesthetic.
Elesia: It’s extremely important for policymakers, clinicians, parents, etc. to know how something so “seemingly easy” like applying for Social Security or Disability benefits can cause some autistic people stress to the point of both physical and emotional trauma. If you were explaining this to someone who was either discounting that this could happen or misunderstanding how this could be, what would you say to make this very real challenge crystal clear?
Laura: I have trouble with such matters as applying for government benefits for several reasons. To start, I can misunderstand language spoken or written by others, and I am autistic, which means my mind operates in spectacularly different ways.
When forms are governmental and include phrases such as “perjury,” I worry that a failure to understand the form in exactly the way that an army of government workers do might create some terrible trouble for me. Whether teachers or principals or parents or whomever, people tend to misunderstand me, and those with power frequently assign to me all sorts of guilt. Authority figures frighten me because any misunderstanding simply will be my fault.
Elesia: Many autistic people struggle with having to pick one thing to succeed at over another, for example, holding down a job and putting mental and physical effort toward that verses keeping a clean home or keeping in touch with family or friends. How can we explain this concept to people who do not quite understand that it can be extremely difficult for some autistic people to devote “brain bandwidth”—if you will—to more than one significant task?
Laura: I tend to use analogies a lot, and will use one here. Within aviation there is a concept labeled “placard engineering,” wherein the manufacturer knows that some issue exists, but cannot resolve that issue. So, the builder places a placard notice on the aircraft telling of something not to do. A Mooney aircraft loaded to aft center of gravity must not be stalled! Stall it and it will spin, the spin goes flat, it is not recoverable: you die. The answer is so simple and easy: fly the airplane fast and level. Then you don’t stall, you don’t spin, and you stay alive and fly an amazingly fast and fuel efficient airplane.
Just as there are no perfect airplanes, there are no perfect humans. In general we who are autistic have but so much energy as we begin a day. One who uses all that up in coping with work and its social issues might not have the reserves remaining at end of a workday to devote toward housework.
Elesia: In the film, it was mentioned that you seem to become a different person when you work with a client. This is something that many autistic people do in order to survive and create successful communication transactions. How would you explain this concept further?
Laura: I long for the day in which PDA (Public Display of Autism) will be accepted. It is not entirely acceptable, and I take this as a matter of human rights, and ours are being violated. Nonetheless, I have found that my success within the world is heightened by me not boldly advertising my differences. I have learned across the span of several decades of life to act nearly “normal,” and my technique works for me. I must admit that there are subsequent issues, but still I do fit into society better due to my efforts.
Elesia: I applaud how you touched on the importance of having a positive community experience. Autistic people can be much more successful when they live in inclusive accommodating communities. What are the top 3 to 5 things you think make a community inviting, and even wonderful, for autistic people?
Laura: Many sorts of communities are good for autistic people. We are all so different, even within the vast similarity of autism. I know that many autistics like large cities for their convenience; not having to own and drive a car can be a large positive. Personally, I like small towns. I find that the nearness of things in a small town obviate much of the lack of public transportation (though I must admit that I do drive – or ride. I have a motor scooter.).
Elesia: There are many parents of kids on the autistic spectrum in your community who are delighted to have you and your wisdom. Tell us more about how autistic adults can help parents of autistic children view things they might see as traumatic about their autistic child in a different light?
Laura: The answer to this question begs another question: What is autism awareness? Simply knowing that autism exists is autism awareness, and I suspect that very few people have no opinion of what autism is; I would also suspect that few of those people’s opinions is at all congruent with the true nature of autism. True autism awareness is to be aware of more than a word: it is to be aware of truths. One major problem with any potential autism awareness is that so much is being said, and wrongly!
Autism awareness can be real. I know the effects of not having autism awareness. I know that autism awareness can blossom into disability awareness and then even into human awareness. This is my job, whether speaking to an audience or adding some small bit of insight to a parent whose child is currently incomprehensible to them. We need the voices of autistic people. We must take ownership of the condition that defines us! We must define that condition! No one else can. We need autistic culture, and I am happy to be one of the people founding it.
Elesia: You’ve invented the word “snarfly”. And you used it to describe how you feel in the presence of other autistic people. Matter of fact, for the first time in your life, being around other autistic people led you to a feeling of snarfly. What is it about being around each other that can be so snarfly for us autistics?
Laura: So there was I, part of a get together called, “Autism in the Pines”. I had some sort of feeling happening, something wonderful and probably intrinsically autistic. Figuring out what I was feeling and why I should have been feeling it was more difficult.
I find that in normal, that is to say non-autistic defined situations, I must be constantly self aware so that I might actively adjust myself to the situation. This was not the case at “Autism in the Pines,” and thankfully it is not the case with some of the wonderful and supportive people that I know and call friends. Not only could I exhibit PDA (Public Display of Autism), but that I could also let down my guard, my internal awareness. To be not obviously self-conscious of every little detail was wonderful. I was comfortable, and to the point of that comfort being the spark of joy.
Elesia: It’s often hurtful and painful for autistic people when we’re accused of not having empathy or emotion. And here we are, at times, feeling events and experiences even more deeply than some non-autistic people. Please provide a few examples of how either you or autistic people in general might be processing something like death or trauma, yet showing it in unexpected or seemingly absent mannerisms?
Laura: I am pained by the oft made by outsiders statement that autistic people have no emotions. The simple fact is that a person—no matter what sort of person—cannot be uncommunicative! Everything we do that is emotionally communicative has both an inner use, such as self-identification of the emotion felt and deepening of the emotional experience, and an outer use, which is communication. When non-autistic people see us as unemotional, it is probably because that person fails to see the attempts to communicate. Of course autistic people have emotions.
Elesia: It’s extremely important for the passionate interests of autistic children and adults to be supported. Tell us more about important steps parents can take with their autistic children when it comes to encouraging and supporting their children’s interests.
Laura: Let’s say an autistic child comes home from school (possibly a day of veritable torture), and the child seeks some time in a comfortable place. Let’s say that what is comfortable for this child is mathematics. The child finds math to be comfortable and interesting, and mostly because it is a realm where everything makes sense. For this child, math is a great brain exercise, as well as a pathway to calmness. The child has sporadic breakthroughs in understanding of math concepts and often understands far greater than the math book explains.
This child has few victories in life. But she is a budding intellectual, she loves math, and she wants to share the beauty of her world and the joys of her discoveries. Does anyone around her study math so that they can keep up with her and share her world? Probably not. As you can see, non-reciprocation goes both ways, and the world places the onus upon the child.
Elesia: How can being treated “normally” can be a help or a hindrance?
Laura: Sometimes being treated normally feels pretty good. Other times it is a hindrance indeed. If I am successful at being seen as normal, then at some point when I truly need some accommodation I may receive this response: “But you really aren’t that autistic.” Well, yes I am! And that I have put a unilateral effort into fitting in, now I have to pay by really having to fit in! Fitting in can be counterproductive. It can also lead to misunderstandings.
Elesia: Like you, I find it much easier to keep things clean when they’re already organized and in order. For example, everything in my house has a designated spot and purpose. In your experience, how does having things organized make it easier to keep things clean?
Laura: I find housework a difficult thing to do. I think this is largely because by the time that I am engaged in housecleaning, I have usually done a whole day’s work. Sometimes I come home from work in tears, in shock, or in meltdown. I usually shower as soon as I am home. I shower not to wash the sweat and dust from my body but as ablution; I wash the day off my soul.
I might be able to cook something. I might be able to wash the dishes. But I am ready not for more work, but for total shutdown. Then I see that a mere five minutes could clean up some mess in the house, and I feel so lazy if I don’t. But I am in a “soft melt,” and my very coordination fails me. I drop things. Forty minutes later I have cleaned up the five pounds of flour that I have dropped, along with the glass shards of its container. I have destroyed a vacuum cleaner with the excess of powdery substance taken into it. I have asthma from flour in the air. I have screamed at the sky and have broken things.
What really allows me to keep a clean house? Being able to do housework as my job, not following it. The real world is hard on me.
Elesia: A lot of people, autistic and non-autistic, have been touched and educated by your film. When you sit back and ponder the magic of it all and how everything has come together, how do you feel?
Laura: I love the film, Vectors of Autism. I love it because it is a continuation of the center of my life. I think that I am lucky. I spent most of my life being autistic but not knowing of that simple fact. I have lived with all the effects of autism, but without the legitimacy of having the concept and label available to me. Then, quite suddenly I found myself within autism and then people around me found that I have an ability to put autism into usable words.
I have a purpose! For so long there was a drought, and for so long, I went without water! It is strange to see myself on film, and I must admit discomfort as I watch. But people love the film! The film gets a message across! The film is part of our attempt to improve the world, and when it is well received then I know that my years in Hell have paid off.
About the author, Elesia Ashkenazy.