This post started life as a cynical attempt at clickbait. I was intending to just make a bunch of stuff up in the hope you’d come here and, er, do what exactly? Read it, I guess. Didn’t really think this one through, did I? Continue reading
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.
I’m back at work now after a five day break over the Christmas holiday and I’ve managed to arrive before 9 am two days running! This might not sound like much but over the past few months I’d been regularly starting between 10 and 10:30.
I was finding it difficult to get moving in the mornings. The alarm would go off at 7:30 am and I’d need every minute of the two hours before I had to leave to stumble through my routines and get ready for work. Saturdays were usually spent in PJs, slippers and robe, often not being able to summon the energy to wash or dress.
The start of the holidays was like that. Whole days spent watching shows and movies on Netflix. But then, after two “lazy” days, something changed. After about nine hours sleep I woke up at 8 feeling refreshed. I might still not have done much, but what else are holidays for? The change was that I felt alert, like a fog had cleared from my head, like weights pulling down on my limbs had sloughed away in the night.
I guess I really needed the time off. Time to rest and rebuild my energy. Time to gather a stockpile of spoons. I’d had no idea how exhausted I had become, but looking back I can see how I was trudging zombie-like through the days, going through the motions without much conscious thought.
You see, this is one of the down sides of autism. Many of us really have no idea when we’ve pushed ourselves too far, too hard, and our bodies are at the point of collapse. The warning signs don’t get picked up in time, if at all. And then it takes time — days — to recover.
How did I get to that point? How could I just ignore the signs? Well, the answer is that I just didn’t notice. I suppose one of the effects of tiredness is that it reduces awareness of the state of the body. In my case this doesn’t have to drop far before it’s hovering around zero.
The way to prevent this would probably involve planning ahead and putting breaks in place before I get to the point of needing them. But when am I likely to need them? I don’t know. If anybody has any suggestions I’d love to hear them.
Being a carer is hard work at times. Don’t get me wrong: I’m not complaining. I do it through choice. But lately caring for Anne has become a whole lot harder. Her illnesses have gotten worse and she has become very depressed, frequently experiencing suicidal thoughts.
I can’t switch off from it. I’m receptive to her state of mind, and — believe me — when you’re prone to depression yourself it’s extremely stressful to feel the echoes of somebody else’s. It negatively affects my own emotional state and after a while, day after day, it builds up to the point at which I have to do my best to shut off. To lock myself away and wait for the overwhelming feelings to recede.
It is exhausting. I have found myself needing to take a break more and more often. And that is a cause of stress in itself because I feel guilty for failing to be there constantly. She relies on me, she needs my help, and I’m not always able to respond.
I’m aware that I’m not looking after myself as well as I would normally. I’m mostly subsisting on take-out food and candy. Things like washing are falling to a bare minimum. I’m becoming snappy far too often, my motivation is poor and I’m feeling low. Oh, and aspects of my gender dysphoria are increasingly intruding on my thoughts.
There is a feeling that I’m losing control, adrift and at the mercy of life’s currents. I know from past experience that this is a dangerous situation for me because it is a powerful trigger for self harm: cutting in my case. The thoughts and impulses are there, even as I write this. I sat for about an hour over the weekend holding a blade, just thinking about using it.
I haven’t yet because I do consider it something of a last resort. I’m just concerned that the time when I yield to my impulses is getting closer by the day: the time when I will regain the illusion of control over my life, at least for a while. The temptation is strong but so far my fear of falling into the cycle of dependency has stayed my hand.
I have Aspergers Syndrome, anxiety disorder and, right now, depression. These are disabling conditions: I am disabled. But I’m not broken.
Stimming is very important to me. I stim when I’m happy, when I’m nervous, when I’m thinking, and when my senses are overloaded.
Picture, if you will, the scene of a domestic argument between a 210 lb, 6″ man and his 90 lb, 5″ wife. One — call them A — has just come home from a night out drinking and is in a volatile mood; the other — call them B — is sitting quietly in front of a laptop.
Gender can be a tricky question, especially when you’re surrounded by people who have a very conventional view of such matters. (Note that this post is about gender identity, the subjective experience of gender. Not sexual orientation.)
I’ll admit I’m finding things difficult right now, what with stress, anxiety and a dash of depression throw in for good measure. And always there in the back of my mind, nagging at me like a hangnail, is the feeling that I’m letting people down.
I’m just going to say, before I start properly, that this is going to be a one-sided view of events. There are two sides to every story, as they say, and I’m sure this one is no exception. This is my side: