“I do not ask the wounded person how he feels, I myself become the wounded person.”
― Walt Whitman,
Almost all my friends are autistic: this wasn’t deliberate choosing on my part. No, there’s a deeper reason. Read more
How old am I? There’s a simple, short answer, but if I was going to go with that I’d not be writing a blog post about it, would I? Read more
Earlier today I interviewed autistic writer and artist Samantha Craft whose recently completed book, Everyday Aspergers, brings together her reflections and experiences of life on the Autism Spectrum.
Alex Forshaw To begin, your book grew from your blog posts on Everyday Asperger’s. What first inspired you to write about autism?
Samantha Craft My middle son, who is now 17, was diagnosed with Asperger’s Syndrome when he was 5 years of age. I’d learned a lot about Asperger’s through him and literature. When I started a second Masters Degree (which I didn’t finish) in Counseling, I was required to seek out a therapist as part of course work expectation. I asked the therapist I found if she thought I might have ASD. She was adamant that she thought so. From there, I had an abundance of emotions about the ideas of me being autistic, and needed a place to process what was going on inside my head.
AF I’m guessing that you suspected you had ASD based on what you saw in your son? Similarities between the two of you?
SC I’d always felt out of sorts, different from my peers and even from adults. I’d sought out answers for years from people in authority, such as therapists, priests, psychologists, teachers, and so forth. I didn’t know why I was the way I was. I didn’t connect the dots that I had Asperger’s when my son was diagnosed because very little was known then and what was shared was very stereotypical and didn’t make sense to me, such as: no empathy, no imagination, no creativity, etc. It took me a long time to connect the dots between my son and myself. He manifested his autistic traits differently as he was a child and a male and in a very stable home. In comparing our childhoods, there were a lot of environmental factors that influenced how I behaved. Similarities, now, are numerous and profound. Especially our need for time alone, limited expectation on others, keen interest in creative writing, deep philosophical thinking and discussion, ability to think outside of the box, and confusion over certain societal hierarchies and cultural standards. But these are not common things you find in an ordinary text book or article on ASD. These are things you find in real autistics leading real lives.
AF You mention the stereotypical nature of much of the literature about autism, and that it is removed from everyday life. Can you give me some examples where your book covers topics that you’d have found most helpful at that stage in your life?
SC Yes, and let me point out first, please, that I would add the word “falsehoods” or “false” to those stereotypes. I have corresponded with many people who are on the autism spectrum or believe themselves to be, and they are for the majority, let’s say 95%, extremely empathetic, kind, compassionate, passionate, insightful, and highly creative and imaginative. These stereotypes are largely based on the observation of autistics—largely on how others who don’t have autism think about autistics and not on the real voices of autistic people.
AF That’s a very good point.
SC It is hard to think of my book in “topics” as I don’t generally write that way. My blog was largely inspired by how I was feeling during that day, and what I felt needed to come out of me in order that I might be able to breathe. Typically I began writing my posts without knowing what I would say or even truly how I was feeling. The writing was my way of getting out my thoughts and ideas. Interestingly, at least a thousand people have written to me to say that I have read their minds. When in actuality, I tend to think they all jump in my head and I have to spill out what’s going on in there. Like a Jungian Collective Unconscious of Aspies swimming in my head. But back to your question, the whole book works as a whole. I cannot separate it into parts of most useful or least. For me, it depends on the given day, how I might be feeling, how I might have been triggered. It’s 150 posts ranging vastly in subject matter. Mostly, for me, it is about community and connecting. For others to be able to see their self in me and for me to continue to see myself in them. For others to know we are in this life and this journey together.
AF I find it interesting that the way you describe your writing sounds a lot like the way I write myself, with the act of writing itself being the catalyst that teases the thoughts into some kind of shape.
You say you see your book working as a whole, and that it is about others seeing themselves in what you have written about your own life and experiences. I know that my big “Aha!” moment was on reading some posts on a blog and realizing that the author could have been talking about my own life.
SC Yes, what you said; that’s it exactly. The act of writing itself is a catalyst. I often just type what I hear in my head. I can hear a still, calm peaceful voice whispering the words to type. It’s a very healing process. I am glad you had that Aha moment. I actually use that phrase “Aha!” in my book a couple times, at least. It’s amazing when we find a collective that understands us and sees us, especially after many of us have felt either entirely too visible in a way in which we were misrepresenting our own selves or misinterpreted by others, or entirely invisible, with thoughts of being isolated and misunderstood.
AF My own experience tells me what other autistic readers can get from your book, but how do people who are not on the spectrum respond, and what can they gain from reading it?
SC I like to say, or rather giggle when I say, “Most of my best friends are neurotypical.” And that’s the truth. I have been fortunate to know some very kind people in my life, especially in the field of teaching. I tend to keep my friends for life, if they’ll have me. Since I have some friends that are not autistic some read my writings. A few I sent my completed manuscript to. And their feedback has been that they feel a lot of what I feel. The primary difference being that I tend to experience life “turned up” or on heightened degree—I mean everything about life, from my thoughts, ideas, emotions, theories, and so forth. So, for the people reading my works that perhaps are not autistic, I would say I write in a way that is accepting of all my self, all my emotions and experiences, and in a manner that invites others to look at their own self and heart. In that, the book could easily be called “Everyday Human,” not just “Everyday Aspergers.” This is not to say that autism isn’t challenging, because clearly being autistic is very hard at times, but it is to say that I, as an autistic, have much in common with others that might not be neurodiverse. Also, interestingly enough, there have been quite a few folks, including some relatives, who ended up discovering they were likely autistic from reading my works, having not ever given it thought before or even known enough to give it thought.
I would add, too, that there are of course other major differences between my non-autistic friends and me, including the constant voice in my head monitoring social interactions, sensory challenges with all my senses, difficulty processing my emotions until time has passed, much stimming, high anxiety, and I could likely list 100 other things as well. Still, there is enough of me that is essentially human in the book that speaks to the human experience.
AF I love that response. Yes, I think it can be very easy sometimes to become so immersed in autistic culture that we forget we have more in common with neurotypical people than we realize. Though our differences, being autistic, are significant enough to affect how we experience life, we are all human and that should count for more than our differences.
Before I wrap this up, I’d like to say that one blog post of yours that I will always remember was your list of Asperger’s traits for women and girls. I particularly enjoyed the way you didn’t just present a checklist of attributes, but instead gave in-depth descriptions of living with those traits. I find your approach very accessible because it’s much easier to draw parallels with my own life when reading how it feels and the effects it has day-to-day.
SC I am pleased to hear you appreciated the Ten Traits post. That is the post that brought 1000s of us (meaning those of us who are autistic and those who support an autistic loved one) together. I recently did a YouTube reciting that post because after four years and with the coming of the book, I wished to put my tone and inflection to the words, to bring it even more life. Thank you for the kind words about my approach. I try to release all expectations, and thoughts of future, when I write. I write to write. I have a faith. I hesitate to say strong, as it wavers, that is uniquely mine and that I don’t ever intend to push on anyone, but this faith, my connectedness to source, helps me to write in a form that feels free of judgment, strong opinions, or want of anything. There is a definite freedom in my writing that others have reported, and I believe, allows for a person to be as they are without expectation of change.
AF Speaking of autism in females, do you think that we need stronger focus on how it affects women and girls differently?
SC In answer to your question, you likely know that answer.
I believe a wave has begun of autistic teachers, activists, advocates, authors, artists, professionals, and leaders and with this wave is a secondary wave of neurodiverse supporters who don’t necessarily identify with being autistic. I believe this wave will continue to build and in doing so bring increased awareness to the autism community and the neurodiverse community at large. This wave will bring to light many of our struggles, those of the autistic community, but also of the struggles of living life on this earth. It will bring connection, community, support, and a sense of purpose. It will encourage service and acceptance of differences.
This wave will naturally in its current expose the world to the autistic nature of an autistic individual. I no longer think it is about gender. As the false stereotypical traits are being eradicated by the true voices of autistics and we are seeing whether male, female, or an individual who doesn’t identify with a gender, we are alike in the way we experience autism; and in the same way we are also uniquely individualized.
I do understand what you mean by differently, with aspects to genetics and social expectations, and how girls naturally try to fit in, but in my experience, most of the men I speak with identify almost entirely to my female traits list.
AF Well put. I see this comes back to the principles of accepting differences while celebrating all that we have in common, building communities on those strong foundations. After all we are all stronger together.
Thank you very much for your time.
Everyday Aspergers by Samantha Craft is due to be released in June 2016. Please visit her website Spectrum Suite to find out more about her, her book, and a range of autism-related resources, events and links.
Empathy. Everyone knows what it is, right? It’s that sixth sense, a kind of ESP that picks up the vibes of what somebody else is feeling. Except that telepathy doesn’t exist, and given the lack of Betazoids on Earth there is nobody who can genuinely “hear” emotions broadcast by your brain.
So what is empathy and how does it work? It turns out that it’s based on observation. Minutiae of expression–body language–signal emotions at a subconscious level.
Humans being social animals, we have evolved to be sensitive to these signals from others around us. They provide hints for how we should approach others, how we should adapt our behavior to their moods so that they will be more receptive to our interactions.
But since we cannot actually read the thoughts of another, cannot infallibly know what they are thinking, we rely on projecting what we can observe onto our own psyche. We predict their responses based on what we ourselves would do in their situation.
There’s an elephant in the room of this analysis of empathy: it relies completely on an assumed similarity of thought. To be able to mirror the thought processes and mind state of another person requires a certain degree of equivalence of culture, environment and neurology.
Among the mostly homogeneous communities around the world this works well enough for the majority of people that they take its universal applicability for granted. But that is not the case.
Those of us who have a different neurology, or were raised in different culture, think differently. When we try to imagine another’s thoughts we predict them based on our own minds. We use the knowledge we have gained through our own experiences.
But, when those experiences are sufficiently different from those of the person whose mind we are trying to model we find that the conclusions we reach are different from those that they would arrive at.
The converse is also true: neurotypical people are equally bad at imagining what autistic people (and also people from different cultures) are thinking and feeling.
Empathy is not some magical ability. It is nothing more than considering the question, “What would I do/feel in their situation?” It’s simply a forecast based on what we can see of them.
For accuracy forecasting relies on both knowledge of the initial conditions (what we observe of their situation and mood) and an accurate model of their behavior (how they think). It is this second part that explains the disconnect for autistic people.
We simply do not think in the same way. We respond differently to the same stimuli. And so when we try to imagine their thoughts we imagine them responding as we would. And that is different to how they would respond.
The result is that we are assumed not to have any significant capacity for empathy, for putting ourselves in the place of others. But my view is that the very definition of empathy means the odds are stacked against us even before we begin.
Over the past year, and especially since the publication of Switched On by John Elder Robison, there has been a lot of attention around a therapy called TMS (or rTMS–Repetitive Transcranial Stimulation).
It’s something I have deep reservations about but others have written passionately and eloquently on the subject. What I want to consider is why somebody would choose to undergo such a therapy that literally changes their mind.
I’m no stranger to the negative feelings that arise when considering the gap between how I perceive myself and what I see when I look in the mirror: that’s a big factor in my gender dysphoria.
I also know first-hand how it feels to be teased and ridiculed for hand flapping, physical clumsiness, social awkwardness, unusual speech patterns and eclectic interests. I’ve had life-long difficulty making and maintaining interpersonal relationships, and I have times where I feel keenly the lack of people with whom I feel comfortable opening up about my problems and feelings.
I understand the drive to make physical changes to one’s body. After all, I’m in the process of seeking treatment to modify my own body, bringing it into closer alignment with what I see in my mind by erasing or concealing male characteristics and developing female ones.
There are two parts to my gender dysphoria. First there is my need to have other people respond to me as a woman, reinforcing my gender identity. Second there is my need to see my own body physically match the mental image I hold.
So as a trans woman I am actively seeking treatment to make changes to my body. This is in contrast to my feelings about my autism. Both my gender identity and my autistic identity go to the very heart of who I am.
The thing is, although I will happily modify the physical characteristics of my body I wouldn’t consider altering my mind. My neurology is inextricably tied to my identity: I feel that changing my mind would make me into a different person.
There’s a line there. I’ve put a foot over that line a few times, testing the water so to speak. I’ve experienced the effects of drugs that affect the workings of the brain: alcohol, marijuana, amphetamines, SSRIs (anti-depressant).
Some of them have positive aspects. For example, alcohol reduces my social anxiety. But there are negatives too: I make poor decisions under the influence of alcohol because it inhibits my self-control and risk-aversion: I’ve gotten myself into some dangerous situations as a result.
Speed (amphetamine) left me unable to concentrate, marijuana was relaxing but caused mild hallucinations and a degree of paranoia. The SSRIs reduced the intensity of my emotions, leaving me feeling numb: in the end I had trouble focusing and engaging with things in my life.
These were all temporary effects: my mind returned to its usual functioning state in time for which I was grateful. You see, I wasn’t myself when under the influence of any of these drugs.
I guess my point is that given the complexity of the human brain and the way its many regions interact it is not possible to adjust one aspect without affecting others. Just as a particular drug affects a small number of electro-chemical interactions in the brain with wider-reaching side-effects, so a therapy like rTMS that alters a small region must cause knock-on changes across the entire organ.
My opinion is that it is not like tuning an engine, a relatively simple system with a limited degree of interconnection and feedback between its components. It’s more like introducing a foreign species into an existing ecosystem. The effects can be slow to manifest, and predictions are error-prone due to the complexity and chaotic nature of the system.
There is no way to know what other effects rTMS would have. It might reduce my social anxiety, but even if that was all it did it would make me respond differently to people I interact with (like alcohol). And if my thoughts and behavior are changed then I’m no longer the same person.
I don’t want to change who I am: I’m comfortable with my identity as an autistic trans woman with all that entails. Changing my body doesn’t affect my personality, my thoughts: I remain me. Changing my mind makes me into somebody else. I would lose the essence of what makes me this particular unique individual, and the thought of that fills me with dread.
This leads me to suppose that for somebody to even contemplate such a thing they must not like who they are. Internalized self-hatred, blaming their neurology for what they see as their failings. It’s like body dysmorphia projected onto the ego, the sense of self. The antithesis of neurodiversity’s principles; an inability or refusal to accept one’s differences.
I see this as a result of thinking colored by the medical model of autism that sees it in terms of pathological deficits, as opposed to the social model which instead looks to society’s failures to provide suitable accommodations and acceptance as the causes of disability.
There’s nothing wrong with my mind: I have no reason to change it. I can’t say the same for the society I live in.
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