Autism Interview #101: Elizabeth Crawford on Listening, Marriage, and Autistic Identity

Elizabeth Crawford is an autistic freelance book editor and writer who blogs at Return to Innocence. She’s on a mission to support other women with Asperger’s Syndrome by writing about her life experiences. She has a new book Chameleon: An Asperger’s Memoir that released this month. This week she shared her experience as a former teacher in a school for autistic children as well as her experience navigating social life and the learning curve of personal relationship development.

What inspired you to write your new book Chameleon: An Asperger’s Memoir? When will it be available for purchase and who is the intended audience?

Four years ago, I began working at a school for kids with autism. I was 28. During that time, I began investigating autism, and it gradually began to dawn on me that I demonstrated many of the factors associated with Asperger’s Syndrome. Eventually I was diagnosed, after having undergone several months of therapy for depression and anxiety and asking for a referral to a psychologist familiar with autism in adults. At that point, I was devouring everything I could about autism and Asperger’s Syndrome. I was already a fanatic about documentaries, and I began reading every book on the topic that I could find. I specifically wanted to read something that I could relate to on a personal level; something written by a woman with Asperger’s that was not simply a list of “tips” for dealing with autism. I wanted a story. I wanted feelings, emotions, anxieties, and honest communication. This is why I wrote Chameleon. It is a narrative nonfiction work that invites readers to experience the key points in my life right alongside me. It covers childhood obsessions, first love, sex and relationships, and how inauthentic friendships present potential dangers for young women entering college.

The memoir will be published on Amazon as a paperback and eBook. The target audience includes people with a personal interest in women on the spectrum as well as anyone wishing to more clearly understand how these individuals might present in society. I think the book would resonate with a lot of people who have autistic women in their lives who do not even know it yet. It is also written in a style that, I hope, is engaging on a wider level. It’s quite relatable and understandable on a neurotypical level as well. It will be available on Amazon by the end of July 2019.

Based on your brief experience working in a school for autistic children (before your diagnosis), what attitudes or behaviors did you see from other teachers who worked with autistic children that were positive and helpful? Is there anything you saw that you didn’t like?

I was incredibly impressed by the teachers and my coworkers there. Most of them exhibited a near inexhaustible level of patience and compassion. At the same time, I saw a lot of exasperation and high stress levels simply because there were a lot of students assigned to each teacher, sometimes as many as 12 or 13 in a classroom. It is very difficult to attend to the needs and deal with situations with that many kids, all of whom are unique. There was a team of dedicated “behavior technicians” who were on call, but nowhere near enough to attend to everyone’s needs 100 percent of the time.

The school employed a zero punishment and practiced Applied Behavioral Analysis strategies schoolwide and for all age groups. The teachers and staff spoke of much success in these endeavors, but I’ve since read a lot of opinions about the questionable ethics of ABA therapy, specifically from those who underwent the therapy as children and adolescents and then spoke about their experiences later. But the staff and teachers at this school were nothing but dedicated, hardworking, and compassionate people trying to do what was best for the kids. Because of such polar opposite views, and having never underwent ABA therapy personally, I don’t feel like I can make a strong statement either way. If anything, I would say that I don’t think the training period for new staff was adequate, and it is so important in something like ABA therapy to be consistent and not make mistakes.

You recently wrote a post suggesting that people on the spectrum may have better listening skills than NTs, and that NT violation of these rules is more accepted than an autistic breech. What behaviors do you expect from people who are listening to you speak? Additionally, how do you show other people you are listening to them? 

There are some interesting observations to consider here, at least from my point of view. It’s a difference between what people see and perceive and what they are conscious of conveying to others. I tend to be listening at all times and on a deep level, but my behavior doesn’t really broadcast that at all unless I’m putting considerable effort into showing that I’m listening, which doesn’t become fully activated until someone is talking to me directly. When this happens, I know I need to make some eye contact and react in some way throughout their time speaking. These gestures include nods and smiles, I also giggle a whole lot in reaction to just about anything during social interaction (unless I can tell it’s inappropriate). This is because I’ve learned that people are receptive to smiles, and it also helps one not to stick out. If I don’t smile and giggle like (my) normal, I inevitably get comments like, “are you okay?” and “what are you thinking about?”

On the other hand, neurotypicals, in my experience, tend to not exert near the level of effort into showing people that they are listening, yet there seems to be this unstated understanding that everyone is listening to each other, and it is mindboggling. People texting or doing whatever on their phones is the most common. I’ve watched people have entire conversations with each other in person while both spend the entire time with their noses in their phones. Yet, I get called out for looking displeased or inattentive when I’m giving everything I got to look interested (even when I’m not, which is often!). It is fascinating, lol.

Has attaining an autism diagnosis changed your marriage in any way? Please explain.

I went through a strange period right after my diagnosis that I still don’t quite understand. I think this is definitely around the time when my depression started to really show up, but it was not a constant thing. It was an occasional cycle with specific triggers. But my husband and I already had an understanding of my anxiety and how this could affect my moods and behavior. My husband has always been incredibly supportive, and he’s always assured me that my diagnosis never changed a thing about how he felt about me or how much he cared for me. He doesn’t make me feel like a freak or that he has to act differently around me.

Describe something challenging about marriage. Describe something beneficial.

The hardest thing about marriage for me to deal with has been coming to terms with the fact that love and marriage are nothing like what I thought they would be growing up as a naïve, autistic woman. There is a level of limited emotional intelligence that comes along with my autism, and I hadn’t realized when I got married the extent to which I’d carried around this concept that love and marriage meant that your spouse was infinitely and inexhaustibly interested in spending all of their time with you, that he would never ever look at another woman, especially sexually, because you are all he needs, and that there is an unconditional nature to your relationship that will never be tested. These things only happen in the movies and fairytales, which are, unfortunately, one of the big influences in how I “learned” about human behavior. Realizing and coming to terms with reality and human nature and all the things that go along with that is a real challenge, and sometimes acceptance of these truths is devastating.

One of the tenets of depression in the experience of a writer and speaker named Andrew Solomon is “the absence of perfect love.” I held onto that phrase because it describes one of my triggers for depression very well. It is an umbrella category that involves many different things that sometimes make me sad or upset when I think on them too much. Solomon describes the nature of depression in an incredibly enlightening way. Other mental conditions, like schizophrenia, tend to be handled as an ailment in which there is something harmful in the mind that should not be there. But depression is different because the problem is that all those veils and protections we put up between our conscious minds and reality to put space between us and the realization of such truths as inevitable death, pain, losing loved ones, absence of perfect love, purpose, meaning, etc., completely fall away. And in that way, depression is an ailment of simply living too closely to the reality we all spend our lives cushioning ourselves from.

I’m sorry… I’ve wandered off topic. The point is, my husband knows that when I need him emotionally, he should be there for me. But the most important piece of advice I would give in terms of marriage is to always remember that you should have ultimate control over your happiness and your life satisfaction and fulfillment. If you can’t be happy and fulfilled on your own, you can’t live life trying to make someone else do it for you.

What mistakes do you see well-intentioned neurotypical autism advocates make?

Well…and this might be a bit controversial, over the last few years that I’ve researched autism, it’s been made abundantly clear that there are a lot of people who are very outspoken about Autism Speaks in that they believe the organization has spread a harmful message about autism, and they do not support the organization—people with autism in particular. I remember watching an ad in which autism in children was represented as a “demon” that was “taking away” people’s kids. Parents are interviewed where they complain about their experiences and their struggles while their children with autism are standing right beside them. I really don’t like this portrayal of autism because it takes away agency from the individuals themselves. Yes, many individuals on the spectrum do not communicate the way neurotypicals do, but that doesn’t mean they don’t communicate.

With that said, I haven’t exactly kept up to date on the goings on of the organization and the atmosphere around it, and if things have changed in recent years to move away from this perception, then that is great. This is just the first thing that came to mind in answer to your question.

Specifically, talking about people with autism as if they are not around, when they are standing right there, is kind of insulting, I think. And I also think that, though it can be incredibly difficult to deal with sometimes, we should work with autism and the associated behaviors rather than concretely against them. What is she trying to say? What is the pattern here? What is everything like when she is comfortable and able to work on communication strategies? Paying attention and listening can go a long way. Don’t spend years trying to get him to stop flapping his hands in public just because it embarrasses you. This isn’t progress.

What are the most important factors to helping you develop a positive autistic identity?

Getting to know other women on the spectrum and seeing how incredibly creative and intelligent and innovative women are within this population, specifically through Facebook groups, has been very encouraging. It is very powerful to be able to communicate with other people who struggle with the same things you are, and this has been very helpful for me. However, I would say that it is possible to become so inundated with struggles and challenges shared by others that it shifts your own mood and life experiences. For instance, reading about others’ struggles in the news for several hours out of they day would probably work to bring down your mood a little and begin to formulate in you a pessimistic view of life in general over time. For this reason, and many others, I would suggest people try to use social media sparingly, as it seems to be taking over everyone’s lives! (The irony of this online interview is not lost on me) Lol

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2 Comments

  1. Lynn

    Reply

    Where and what material did you read that discusses the “questionable ethics of Applied Behavior Analysis”. Like any therapy, but especially in ABA, we strive to meet the highest ethical standards. It is our to continually monitor and question our own ethical behavior. Please read this -BACB Professional and Ethical Compliance Code for Behavior Analysts. It’s available on-line. Also ABA, can be used with any person or animal that has behavior. ABA works well with Autism and it is considered a medically necessary treatment. One of the reasons is because behavior analysts tailor each intervention to each person. Essentially, we learn the way that you learn. If you find behavior of yourself and others fascinating, then I recommend learning more about the science of ABA.

  2. Jenna

    Reply

    Hi Lynn, Thanks for the comment! There is a plenty of information about the questionable ethics of ABA available in a simple Google search. Despite the ethical compliance code you referenced, I think some of the criticism for ABA may come because the code is so often ignored or not adhered to. In the collection Loud Hands, Autistic Speaking, one autistic contributor mentions that she always defended ABA because she didn’t find anything wrong with the therapy if it was implemented respectfully. However, she notes that after seeing so many instances of misuse and abuse, it was hard to endorse. If you are looking for some general information outlining the general ethical issues with ABA, this Atlantic article summarizes a bit about both sides: https://www.theatlantic.com/health/archive/2016/08/aba-autism-controversy/495272/. Another article worth reading is “The Misbehaviour of Behaviourists” by Michelle Dawson. http://www.sentex.net/~nexus23/naa_aba.html . Thanks for your interest!

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