Dear Allies of the Autistic Community

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***This post was initially written as part of an educational series for a Facebook group called Autistic Allies, a group about gently teaching allistic (non-autistic) people how to be good allies to the autistic community. I’ve adapted it a little for my blog***

On the Internet I often see parents (and others) shut down autistic people in the face of anger, frustration and perceived rudeness.  I want to touch on why this upset happens and how to handle it and still be a good ally. I do note that not all parents of autistic children ally themselves with us, many set themselves against us, however this post is not about them, it’s about our allies –  allistic and/or neurotypical people who wish to see the autistic community flourish because their children will one day be a part of it.

As you all know it’s April, so autism awareness is at fever pitch everywhere we turn currently. For those of us who are autistic it can be a month of constantly having to manage our emotions in the face of some pretty extreme opinions about us, freely bandied around on articles, in Facebook feeds, on Twitter – everywhere. Many autistic adults in the online community see April as an assault rather than a time of bolstering support and the reasons are many and published variously in excellent blogs across the Internet. Here is a fantastic curation of many links for further information on this topic.

However even during the rest of the year the world is busy dumping their opinions on us, so we still have to manage this most of the time. Those of us who are autistic advocates put ourselves out there at great cost to our personal energy reserves. We do this to try and counter the ignorance and negative rhetoric and bring parents into the fold so that we can help them navigate their child’s autism in positive and healthy ways, but we also genuinely care about the future of all autistic children because they are a part of our tribe.

Very commonly when interacting with people who aren’t autistic but have a stake in the life of someone who is, we are told we can’t possibly understand, that we have no idea, that we are “too high functioning” (aka not autistic enough) to get it, that we are arrogant and rude, and we are pretty much constantly told to shut up and sit down because our input is worthless.

Some people even treat us like we are children because we are autistic, and can be extremely patronising. They demand respect of us as though they are in a position of authority over us. This is not generally a conscious thing, it’s an implicit bias because they are used to being in charge of the person with the disability and don’t consider us as peers. The most common times I see this unfortunate attitude is when caregivers and people who work within the disability sector engage in dialogue with us.

This, of course, all takes its toll and autistic adults are also trying to manage the very things that define parts of our autism – huge emotions, quite blunt and “to the point” delivery, massive disadvantages in social exchanges such as missing out on info “between the lines” and being able to modulate our tone correctly (yes, this is a thing even in text – I’m frequently told by people that I sound angry even when I think I’m typing something very neutral or even friendly).

Many of us have also endured a lot of abuse in our lifetimes and this can feed into our emotional states when interacting with people. We are often accused of bullying which is not the intention we have when we express our impassioned pleas for people to listen to us. We are used to being kicked to the bottom rung of the social ladder and our raw emotion at being tread on constantly can be misinterpreted (or deliberately used against us) as wielding an oppressive power that we simply don’t have.

Then add to this allistic people who are used to there being information “between the lines” and so infer things we have not said, and who seem to forget we have the very same condition as their children, and it ends up a perfect storm where we can lose our equilibrium. I rather think that anyone of any neurotype would lose their cool when faced with the same conditions.

Meltdowns are also not uncommon for us in the face of high emotion and sensory overload, even as adults, though they can sometimes look a bit different to children’s meltdowns. I.e. mine are not usually explosive, I turn into a teary mess and can’t think properly or speak much – however during a meltdown I’m still often able to type even if my ability to speak has deserted me entirely.  A mid-meltdown attempt to communicate can be my least tactful and diplomatic effort because I simply don’t have the resources available to think properly or modulate anything at all.

So as our allies, I’m asking you to please consider all of this the next time you are feeling confronted by an autistic adult who you feel is being too rude/angry/etc around advocacy efforts. Of course it’s never pleasant to be in the firing line, but if you can develop the ability to handle your defensive emotional reaction, there is generally going to be something of value that can be learned that will help you and your autistic child (or relative) on your journey and will help your ally efforts to the autistic community.

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In which I learn I have Savant Syndrome

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I recently wrote an article for Thinking Person’s Guide to Autism about the imposter syndrome I have been experiencing since my autism spectrum diagnosis. In the article I also explain how it has affected me since my art ability suddenly re-appeared several years ago.

In this post I’m going to go into the savant thing a little more because I think what most people picture when you say ‘savant’ is an individual with an intellectual disability being able to calculate hard math problems or count a pile of toothpicks on the floor in an instant. I don’t measure up when held to that stereotype so I’m going to discuss how it all came about for me.

It all began when my art abilities re-manifested 10 years after losing them thanks to the side effects of an SSRI medication I was on for anxiety. As I’ve detailed in previous blog posts I was very confused because, although I hadn’t practiced at all in that time, I was suddenly able to draw and paint incredibly detailed artworks and learn how to use different art mediums in a snap.

The story is kind of amusing, at least to me. A friend of mine kept insisting that I was a savant which I thought was patently absurd and I told them so. They kept insisting so I decided to find the most expertiest expert that ever experted on savant syndrome and straight up ask them if that’s what I had. I wanted them to say “no, it’s not savant syndrome” so I could tell my friend to shush once and for all.

I trawled the net and came across the website of Darold A Treffert. 50 years experience in studying savant syndrome – I figured he of all people would know for sure. I composed an email detailing my diagnosis, my history with art and the way it disappeared and came back transformed, and asked for his verdict.

Thanks for your message.  To me your artwork is exceptional and stunning.  The story behind it is also very interesting.  Savant syndrome by definition is a rare but remarkable condition in which persons with some underlying developmental disability such as autism or asperger’s has some extraordinary ability accompanying the disability and superimposed on that underlying disability.  With a formal diagnosis of asperger’s, and with your exceptional artwork, you would meet the definition of savant syndrome.

…Of equal interest is the ‘sudden’ return (literally overnight) since in my work I describe some ‘sudden savants or sudden geniuses’ where an abrupt epiphany occurs bringing forth musical, math or art skills.

… oh.

I was equal parts mystified at this new information about myself and aggrieved that I didn’t get to tell my friend to shush after all. It’s been a very difficult thing to mull over because I truly don’t consider myself anything of worth or in any way above average. I guess a lifetime of screwing up and failing at things will do that to someone.

I wanted very much to talk about it with people because that helps me process things mentally and I enjoy discussing all the facets of my place on the spectrum because it turned into an obsessive interest from diagnosis. I discovered, however,  that most people either measured me up to the ‘idiot savant’ stereotype and dismissed me as making things up or thought I was being arrogant and above myself.

I don’t think my savant ability means I am better than everyone else at art – there are tons of incredible artists out there who I look up to. All it really means to me is that I can pick up my art materials and do decent things without a bunch of practice and that it exists alongside my inability to do a bunch of other things that most would find easy.

Before I was able to give it a name, it fueled my imposter syndrome because I didn’t have to put in all the effort that others do. I felt like it wasn’t really mine and that I couldn’t feel any sense of accomplishment in what I was doing as I hadn’t paid my dues. With help from my psychologist I’ve been able to overcome a good portion of this feeling and I’ve discovered along the way that it’s great to have an interesting story about myself to fill in the blanks. Previously when people asked me about my art, my only script was “I just… do it” along with an awkward shuffle and the intense desire to disappear into the ground.

Since contacting Darold, I have been put in touch with Strokes of Genius, Inc who act as agents for select artists on the spectrum. They have since signed me and with their help my work will now be exhibited and sold in the USA!

 

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“A Gentle Touch” Two Asian elephants being affectionate. 11.5″ × 16.5″ graphite. Visit here for prints and gifts featuring this art.

Lost and found, or how my art ability came back again and again

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Continuing on from my previous blog post, after regaining my art abilities and then scooting off and hiding under a rock at the flood of anxiety that ensued, I lost motivation and I lost that obsessive interest that allows me to effortlessly hyper-focus and overcome my awful executive function to complete art projects. I was sure that my brief moment of art was over and done with and life was returning to status quo.

However one evening, about a year later, a friend of mine showed me a free open source digital art program called Krita. I was no stranger to digital art, having used Photoshop since 1997 and having done a multimedia diploma and graphic art diploma, but Photoshop did not inspire me to paint. Krita was something else again – the brushes felt amazing to use and my obsessive focus latched onto it like a bulldog. My motivation returned and once again my art evolved over a short period of time from sketchy to complex.

In addition, not only did my motivation return, so did my imagination! After being unable to mentally visualise/imagine properly since taking that fateful medication, it returned in force and I was able to return to the fantasy artworks that I enjoyed when younger. I have no idea what happened up there in my grey matter to cause me to lose my ability and regain it fully 13 years later, but I felt whole again at long last. I felt like everything I had lost had returned to me in a better form, like a caterpillar disappearing into a cocoon to return as a butterfly.

Butterflies and butterfly wings actually became a recurring visitor in my artworks, which I didn’t really notice for a time. When I became aware of it, it felt apt and I decided it was probably a subconscious metaphor for the whole experience.

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“Transfixed” Painted digitally with Krita in 2014. Visit here for prints and gifts featuring this art.

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“Little Forest Guardian” Painted digitally in Krita. Visit here for prints and gifts featuring this art.

I began to take commissions for my digital artworks and this continued well for a while until I started to butt up against the same problems that had plagued my earlier foray into art. Once more I withdrew when the weight of it became overwhelming. I was beginning to feel a bit like a yo-yo at this point, despairing of being able able to ever turn my artistic abilities into something that could work for me.

All was not lost however! Several people are now working with me to help me gain a stable basis from which to work. With expert help and some at-home support I’ve been able to start gaining confidence at the ‘people’ side of being an artist. I’ve also had help with scheduling and tactics to keep my executive function at heel. To top it all off, I now also have an agent who deals with a number of artists on the spectrum. An organisation called Strokes of Genius have signed me and will exhibit and sell my traditional art in the USA. So – onward and upwards!

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“Anticipation” My third acrylic painting, which is shortly heading to the USA.

The 10 year art block

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As I mentioned in my previous blog post, I grew up drawing constantly. I was as obsessive as about art as I was about horses and no blank surface was safe from me, including my bedroom walls (sorry mum). I used to carry art materials everywhere, even sleeping curled around piles of books and art things like a dragon with it’s hoard of treasure.

The subject of my art was almost always the same – horses. I recall the exasperated queries of “don’t you ever draw anything else?!” on many occasions from peers and family members. Proudly showing off my latest magnum opus often netted the disappointing response of “oh, another horse”. In my teenage years dragons joined the horses for some variety.

All was bowling along quite well with my art despite setbacks with mental health starting to crop up in my teenage years. With medication I managed to finish high school, complete a diploma in multimedia and then a diploma in graphic art. Partway through the graphic design course, my doctor switched me from my no-longer functioning medication to a new one and everything came to a crashing halt. I no longer seemed able to create anything without a lot of effort and it slipped away more and more until one day in my early 20s I looked back and wondered what had happened.

The next ten years were a desert wasteland as far as art was concerned, even though I only took that medication for a few of those years. I recall many hours spent in frustration with a pencil and a blank pad, just willing anything to come to mind so I could draw it. Even drawing from references seemed to go wrong most of the time. I couldn’t form mental images properly anymore and whatever magical connection I’d once had between my brain and my drawing hand seemed to have been severed. On a very few occasions I managed to do something of worth, but they were years apart.

On the plus side I was able to gain employment and keep it for a short time, but it became apparent that the medication was only useful to a point. Once the descent into anxiety began to uncontrollably snowball, I would have to quit and recuperate and start the process anew. Eventually I sunk into a kind of ennui – unable to find any self worth and plagued by everything in life presenting a massive battle, no longer able to find identity in my art or find a foothold in living an “adult” life. I just gave up. I had no other options at this point as I had no idea what was wrong with me. Depression became a constant friend alongside anxiety

In 2011, after ten long years of this, I had resigned myself to shelving “artist” as part of my identity. I was sure it was never going to return so you can imagine my shock when one evening I was suddenly moved to pick up a pencil and draw a picture from a coffee table book and not only was it suddenly easy to do again,  it was also exciting! I relished every moment of it and I wanted to keep going. Suddenly my motivation and ability roared back to life and I was consumed with the desire to draw once more!

Initially things were quite sketchy. Realism with not a whole lot of detail, similar to what I used to do before my art skills deserted me. However it quickly morphed into something else again. It was as though I hadn’t lost that 10 years at all and I had spent all my time practicing instead! Below are three of my artworks from 2011/2012. The first two show my rapid progression in handling graphite. In the third image I decided to try my hand at painting in acrylics and researched what to do online, producing this as my first attempt.

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A portrait of Danny, my horse, drawn in late 2011.

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“Black Caviar: Intensity”, drawn from a photo by Michelle Terlato in 2012. Visit here for prints and gifts featuring this art.

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“Eclipse” Acrylic on canvas in 2012, painted from a photo by Sarah Bailey. My first ever acrylic painting. Visit here for giftware featuring this art. Limited edition prints (run of 50) are available by contacting me.

I went on to try coloured pencil, scratchboard and various other art mediums, finding them all relatively easy to pick up with minimal practice. This is not how things used to be when I was younger – new skills came along very slowly with much practice back then. In fact it was so weird to me that I had a lot of trouble accepting that it was “real”, that it was my own art and not somehow some trick life was playing on me. I started exhibiting and winning awards and the weight of feeling like a giant fraud began to press on me so heavily that I dissolved into debilitating anxiety again.

I had immense trouble accepting compliments and talking to people about my art. At exhibitions I learnt to say “thank you” instead of doing a rabbit in headlights impersonation, however I was (and still am) at a complete loss over how to respond if they continued heaping praise on me. One of my pencil works “Black Caviar: Intensity” (pictured above) was accepted into the Inglis Equine Art Prize, a big deal thoroughbred art competition run by the racing industry in Australia. It went on tour around the country, but I hadn’t reckoned on the press suddenly taking an interest. One interview later and I disappeared into total panic, shut up shop completely, withdrew from the public and stopped doing art for a time. I was not at all equipped to deal with any of it.

What I had was “Imposter Syndrome“. Combined with major social anxiety and generalised anxiety, which I have since learned are related to challenges I have being on the autism spectrum, it was just too much for me to deal with. Once more I thought my art had deserted me. My motivation was gone, my ability to find any joy in any of it was shredded to ribbons. In my next blog post I’ll write about how it came back again and how it had changed – again!

So about that diagnosis

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The first thing I want to cover is my autism diagnosis. I know people can be cagey about this sort of thing as it covers sensitive medical information and whatnot, but me being me I’d rather just be upfront with people over what I deal with. I was diagnosed on the spectrum at age 33 after searching for answers as to why I was essentially failing at life and slipping into a deeper and deeper mental health crisis. The DSM V had just come out so I was diagnosed with Autism Spectrum Disorder Level 1 as I have no accompanying intellectual challenges. Prior to 2013 this was Asperger’s Syndrome. I tend to use Asperger’s and autism/autistic fairly interchangeably.

I was a highly verbal, gifted and annoyingly precocious child who could read well above my years and soaked up information on my interests (ok, obsessions) like a sponge. I was great at schoolwork but in the schoolyard I didn’t have a clue and was bullied from pillar to post until I was removed for home schooling. I was frequently confused and anxious about what was expected of me all through my childhood and teenage years with less and less clue as the social behaviour of the kids around me became more and more complex. I started observing and copying other people to try and get by, in effect becoming a social chameleon, all while feeling this underlying sense of terror that at any moment I was going to get things horribly wrong. I felt different and out of place from a very young age. As I obsessively kept practically everything I’ve drawn since childhood, I still have a drawing I did as an 11 year old of myself as a little anthropomorphic animal of some sort trapped in a glass box. I didn’t feel fully human and I felt like there was these invisible walls stopping me from fully participating in my own life.

I had, and still have, sensory problems – clothing tags, sock seams, showers, hair brushing, tooth brushing etc was all a constant barrage of discomfort as a kid. In fact I got around stark naked at home for as long as I could get away with it because clothing was awful and restrictive. The older I’ve become and the more anxiety I’ve fielded, the worse the sensory challenges have become. Things that were more or less ok as a child, like loud noises and listening to music, have become incredibly hard for me to deal with now and can easily trigger shutdowns and meltdowns.

As to meltdowns, I rarely explode outwards when everything becomes too much, I implode instead and run off to be alone and cry/stim (yes, including self-injurious stuff if the meltdown is bad enough). I was so anxious about upsetting people with my behaviour as a child that I developed a strong ability to bottle everything up and go on autopilot until I could get somewhere private to lose it. I have had several mammoth meltdowns where I haven’t been able to do this, but in general it’s a very useful mechanism. It has, however, had the side effect of people giving me the side-eye when they learn I’m on the spectrum – I don’t act like the stereotypical small boy melting down in public. In short, I’m a textbook case for a female on the spectrum.

School was easy for me due to above average intelligence, so the extent of my executive function issues didn’t show up until high school when essays and a heavy workload began to place more demands on me. As it turns out, I had no idea how to study and no way of figuring out how to organise myself properly. Everyone just assumed I should be able to keep sailing through because I always had, and I put an intense amount of pressure on myself to try and keep up.

My first breakdown was in high school when I stopped being able to cope with the stress and vomited for weeks on end until diagnosed with extreme anxiety and put on a medication to control it. This got me through high school and through two diplomas until it stopped working. My medication was changed and with the help of that one I gained and held a job… for a short time. I repeated this pattern of gaining and quitting jobs into my mid 20s – I was an excellent worker, honest and responsible and always striving to do my best but I couldn’t sustain it. My mental health would crash every time and the longest stretch I ever managed was one year. The shortest was a couple of weeks.

Unfortunately this medication also had the side effect of destroying my ability to do art. I grew up with art materials as my constant friend and there was not a blank surface that was safe. While my art skill was generally above that of my peers, it was a pretty normal trajectory of practice a whole lot and improve in tiny increments. I was not a child prodigy but I had some talent. Art was a huge part of my identity and it just evaporated. It was gone for 10 whole years (apart from a few very lonely exceptions), long after I’d stopped taking the medication. When it came back it was completely different and this is part of why I was identified as having savant syndrome, however that’s for another post.

In my mid-20s chronic depression was also added to my growing list of mental health complications. I tried to do university and managed 6 weeks before crashing and burning. I was put on another medication which not only didn’t help all that much, it started causing rapid cycling mood swings. It has been years since I’ve taken this medication and I still have them, though not as viciously as when taking it. A constantly growing list of failures, the constant companions of anxiety and depression, and increasingly more issues with sensory overload accompanied me into my 30s. I became a ‘frequent flyer’ of what’s known in Australia as the Mental Health Plan, a government scheme to help offset the costs of seeing mental health professionals. Psychologists were not able to offer me a whole lot – though I did learn the basics of cognitive behavioural therapy which has made some difference in my ability to manage my severe anxiety.

Finally I was diagnosed with ASD by a psychologist who knew what she was looking at. I have since been seeing another psychologist who also has many years experience with people on the spectrum and her professional opinion backs up the initial diagnosis. With her help, and with the vast amount of reading and researching I’ve done since diagnosis I’ve been able to pinpoint many of the things that make up my specific spot on the spectrum along with the social challenges, depression and anxiety. Among these are sensory processing disorder, auditory processing disorder, prosopagnosia (faceblindness), executive dysfunction and synesthesia.

Since I have a history of long-term side effects from medications, professionals are now loathe to try any more with me so I am learning to cope through a variety of other means – mindfulness, meditation, breathing techniques, diet, exercise and so forth. Now that I know exactly what I’m up against I’ve been able to put a face to a lot of my anxieties which gives me hope that I can confront them over time and work out ways to ‘be’ that don’t put myself under a crazy amount of stress.

Since my art ability came back in 2011, I’ve tried several times to get it going as an income-generator as I’m unable to hold a job. Each time I started off well, taking commissions, entering exhibitions, even winning a few awards. Unfortunately, I would hit a point where the terror of social anxiety and my lack of decent executive function skills would break me and I would stop doing art and disappear. This time I have the help of several people, including professionals, and a fiery determination to not let things get the better of me again.

 

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A digitally-painted self portrait

Once more, with feeling…

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Well here I am again. I think this is my third attempt at keeping a blog in the last few years. Now I know what the problem is, this is me trying again, hopefully with some staying power this time.

So originally I began a blog for my art. There’s an interesting story about that – one I’ll save for another blog post. Then I was diagnosed with autism spectrum disorder (ASD) – that’ll also be another blog post. And then the two were married together when I was identified last year (2015) by Darold Treffert, a leading expert in savant syndrome, as having a savant skill in art. This also has its own amusing story that I’ll get to.

Now here I am attempting to try again. This time I know what I’m up against. I’m not lazy, useless and forgetful – I have some pretty serious executive function issues! I want this blog to be a wonderful mix of my experiences with being on the autism spectrum and my identity as an artist. I hope you’ll come along for the ride (between you and me, I could use the encouragement!)

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Django of Cacharel, a Friesian stallion in graphite. Visit here for prints and gifts featuring this art.