The Horse Boy book review part II: The journey and aftermath of Mongolia

When I last left off reading and reviewing the Horse Boy, Rowan, Rupert Isaacson, and Kristin Neff were on their way to Mongolia via the UK, and were about to arrive in the capital city of Ulan Bator, which is, according to Rupert Isaacson, a depressing, ugly sight, "a carbuncle on the face of one of the most unspoiled, most intact ecosystems left on earth." My my.

But as it is, they're only staying a few days there, before they head off into the wilderness to meet various Mongolian shamans, and maybe establish contact with the enigmatic Deer People, that is, Northern Mongolian reindeer herders.

The "crew" consists of Tulga, a guide, his nephew/assistant Bodo, the film crew, Rowan and his parents. I must admit, I cocked an eyebrow at there not being a medical doctor present. Not just because of Rowan being autistic and possibly needing a doctor there in case of a major emergency, but for the sake of the rest of the crew. If someone were to break a leg, or be trampled by a horse, or get bitten by an insect or a snake, would there be a hospital available quickly in any way other than emergency airlift? It seemed like an oversight to me not to have a doctor on the team so that if something were to happen, something could be done by a medical professional.

But I digress. the next order of business was the first Shaman ritual,at the base of a sacred mountain, where nine Shamans would work on Rowan. But first, a trip to a museum and an amusement park. At the amusement park, Rowan was stared at, as any autistic five year old with a film crew of his own would in any country. But Isaacson noticed something different about the attention the Mongolian people gave Rowan from the attention he received from Britons and Americans:

They were curious about us- You'd have had to ad to be inhuman not to be, as a five year old whizzing about the crowds with a film crew close behind would attract attention anywhere. Yet, once the first surprise was over, everyone tolerated Rowan's pushing, yelping, and joyful rushing about with a good humor quite at odds with what we had come to expect in the United States and Britain, when Rowan was at his most autistic. Here, it was as if we- he- were somehow being accommodated, not merely tolerated, despite the spectacle we were making as we thundered about in his wake like photographers behind some diminutive model or movie star.

Previously, we had been told in America that when Rowan would act oddly or lose his temper in public, the common reaction was tut-tuts of shame at the parents not controlling him, or even coming up to Rowan's parents to inform them that they were failures as parents for not controlling their child's behaviour in public. Isaacson it had been a small comfort to snarl back, "He's autistic, what's your excuse?" and have the people retreat in embarrassment. This Mongolian mode of treatment of the parents seemed preferable to me, even though I don't know exactly what they were thinking. Causing stress and public humiliation to parents of a disabled child does a disservice to everyone. It stigmatizes the disability, hurts the parent-child interactions, and makes life more difficult for all.
The next day, Rowan & Co. set out to meet the Shamans for leg one of the journey. They gave thanks to Isaacson, explaining that under Communism's rule, Shamanism had been repressed, and he was assisting in the comeback of the old folk religion, not only by bringing Rowan, but I think the cameras and the eventual film would help shine a light on the significance of the religion to the shamans.

The ceremonies involved yak's milk, vodka, and elaborate, repetitive chanting and drumming. Honestly... While some parts of it didn't seem so bad, a few moments made me severely uncomfortable:

Still, once in the shaman's arms, to my great surprise, he went quiet and still. Until the assistant passed her spiritual mistress a bottle of vodka, from which the shaman took a hearty pull, then without warning spat the liquid over Rowan's face and body. The result was predictable:

"Gi-RAFFE! GOTTA GO HO-O-OME! FREY-ENCH FRY-YI-YI-YES!"

I'm twenty-one years old, mostly a placid person, and not much can surprise me. But someone spitting vodka all over me without warning would illicit some major screams and howls of pain and disgust. Especially if it got into my eyes, nose or mouth, which I suspect may have happened to Rowan: alcohol of all kinds, let alone straight up vodka, is very flammable and stings the skin upon contact, but in the eyes, nose or mouth, it downright burns.

I honestly think doing that, regardless of the cultural context, was cruel.

But that doesn't even begin to compare with the discomfort I felt for Kristin, Rowan's mother:

"Er.... the shaman says that when you were pregnant, black energy entered you womb. You must take this vodka and cleanse the, um, parts where Rowan came down."

Kristin looked at him a moment. "You're saying I have to take this bowl of vodka and wash my vagina out with it?"

Tulga looked at the grass. "Um... yes, the shaman says is (sic) very important.

Kristin took this all very well, joking about photoshopping out her cellulite and washing the C-section scar with the vodka while it was filmed. But I was mortified. Again, alcohol burns when it comes into contact with certain tissues, and I can't even imagine the horrible burn of having to douche out your vagina with vodka, let alone the consequences of the PH balance of the vagina being thrown off or drying it out.

At this point, the skeptic in me was inside screaming "How can you read about this! This makes ABA and refrigerator mothers seem tame in comparison!" And it's true. The idea of black energy causing autism was very anti-neurodiversity. Saying the womb was entry for this black energy was akin to autism's discovery and the coining of the refrigerator mother hypothesis. I just could not wrap my head around either Rowan being sprayed or this douching to be acceptable. I wasn't particularly expecting a neurodiverse view from the Shamans honestly, but having vodka spat onto Rowan took me aback.

It continued with Rowan's parents being whipped by the shaman painfully. Rowan, mercifully, received a more humane whipping, and he was described as being giggly and cooing throughout the whipping, so I was slightly relieved. But at this point I was seriously beginning to worry about this. It was not good that we were only two days into Mongolia and I was already getting sick to my stomach with horror at what was being done. I just hoped that future treatments would be more humane, and that this was just something akin to hazing from a sorority or fraternity at a university.

The next chapter detailed the shamans asking Rowan's mother Kristin if there had been anyone on her side of the family "like a shaman", who perhaps had been "oversensitive of the mind" and "not entirely stable". The shamans were alluding to a close relative, as a type of spirit, disrupting Rowan, and black energy related to water, that black energy had entered Kristin's womb while she had been in water, and this unhelpful ancestor and the black energy were part of Rowan's autism. Anyone familiar with cold reading can see that this isn't exactly a revelation. Most people have a female relative, and almost all families have a relative who has some type of mental disability or may be considered eccentric or unstable, and in many cultures, women are considered more susceptible to mental illness, or at least were more likely to be diagnosed as having something wrong with them if they deviated from the norm. So these small suggestions could have Rowan's parents overthinking and experiencing pattern recognition when there is none. Humans are absolute devils about seeing significant connections that don't actually exist.

At this point, they set off in a van for outer Mongolia to meet more shamans. There is, according to the narrating Isaacson, a decided improvement in Rowan's behaviour. He is speaking in more fluid sentences now, possesses a larger vocabulary, and says "please" and "I love you".

But then an unusual occurrence takes Isaacson by surprise: Rowan refuses to ride the Mongolian horse that he had fitted for them to ride together in the wilderness, opting to stay in the van. His father notes this ironically, but he seems heartbroken at Rowan's refusal to ride. After all, this book was called The Horse Boy. But I couldn't help but remember that Rowan had not necessarily had a natural rapport with all horses, just Betsy and her herd. Maybe this horse just wasn't one that Rowan felt a connection with, or he was just plain tired and wanted to ride. Whatever the case, I didn't particularly see it as a devastating blow.

But Isaacson admits that he makes a mistake, and forces Rowan to ride Blackie with him. The chapter ends with Rowan screaming "help me, help me!" and "retreating" due to his nervous system being overloaded with stimuli. Having experienced similar blackouts before, I was extremely pained to read this, it was down right triggering for me, and I had to pause to put the book down for a few moments and gather my bearings.

When I started up again, Isaacson was miserable and angry at himself for what he did to Rowan, angry that he hadn't considered all the possibilities and accommodations, and wondering if Rowan had been stripped of his connection with horses by this trauma.

Fortunately though, Rowan bonds with a horse named Blue, and they eventually make it to the Reindeer people without much incident, save some food poisoning, a few tantrums from Rowan, and numerous "Code Browns" (Rowan is incontinent, this is parent code for a wash-up and fresh change of pants) The shaman they were seeking, a man by the name of Ghoste, assures them that Rowan will be a shaman one day, unless they do anything to disrupt it. After a ritual and the sacrifice and consumption of a special reindeer, they head out to return to Ulan Bator, and by all accounts, Rowan begins to show decided improvement. His speech increases drastically, he expands his imagination, and, much to his parents' relief, Code Browns become a thing of the past. Everyone is joyous as Rowan learns to use the toilet, begins to tell stories, and seems to lose his neurological overloads.

Upon their return to Texas, after a meeting with Simon Baron Cohen (Many bloggers better than I have covered why Baron Cohen is problematic as a speaker about autism) the family begins to notice Rowan's improvements are not hiccups or confined only to Mongolia. He seems happier, less miserable, and less prone to tempestuous changes in his body due to sensory overload. He makes friends, rides horses, and continues to progress. I define "progress" here as this: Rowan is happier. He is more aware of his surroundings, yet less likely to be hurt by them through a sensory overload.

When Rowan benefits, his family benefits. His parents experience more freedom now that their son is happier and less attached to them. During one of these outings, Rupert Isaacson mused on Rowan's progress:

Rowan is still autistic- his essence, his many talents, are all tied up with it. He has been healed of the terrible dysfunctions that afflicted him- this physical and emotional incontinence, his neurological firestorms, his anxiety and hyperactivity. But he has not been cured. Nor would I want him to be. To "cure" him, in terms of trying to tear the autism out, now seems to be completely wrong. Why can't he exist in both worlds, with a foot in both, as many neurotypical people do? Think of immigrants in the United States, living with one foot in their home language and culture, the other in the West, walking in two worlds. It is a rich place to be. Can Rowan keep learning the skills necessary to swim in our world while retaining the magic of his own? It seems a tangible dream.

I am not ashamed to admit that when I read that, I started crying.

The book ends a few pages after, talking about a new charity that Isaacson set up to combine equine therapy with autism therapy, and that the proceeds from this book would benefit scholarships for families of children with autism who could not otherwise afford this luxury/necessity.

The epilogue from a year and a half later came, detailing Rowan's continued progress and the success of the equine therapy school. With it were acknowledgements and thank you's, sources (one of which was Autism Speaks, ugh) and reading group guide questions. The very last question:

17. In what ways might autism be considered a gift?

It couldn't have possibly ended in a better way.

Conclusion

I went through a lot of emotions when reading this book. I took a different approach to both reading and reviewing it than I did Unstrange Minds or Autism's False Prophets, because while the former two were written by doctors in medicine or anthropology, and Unstrange Minds took a few steps away from Grinker's daughter Isabel, this was completely about Rowan and his family, personal and up close. I knew I would have to take a different attitude besides my de facto analytical approach, and take it all with a little grain of salt. And if you document my shifting opinions throughout the review, you'll notice I went through quite the emotional roller coaster: Anger, confusion, sadness, happiness, relief, apprehension.... It was interesting.

I also knew when I started this project of new age perspectives on autism that I would frequently be challenged by assertions that would upset me as a skeptic and a science advocate. Such is the case in this book, being angered by giving Rowan homeopathic solvents, chelation elements, and Isaacson's uncritical assertion that scientists believed that autism was caused by environmental factors. In fact, a genetic view is much more common, and the main proponent of the environmental theory (I hesitate to even dub it that) is quacks at Age of Autism. The promotion for Autism Speaks though, made me angriest. To have it come at the end of the book made all of Isaacson's beautiful words about curing being an absurd idea to ring hollow to a degree. I'm guessing he's not familiar with Autism Speaks' motives and philosophy, but it was still a bad move in my book.

However, in spite of it all, I really enjoyed this book, and I was overjoyed by the message of embracing autism. I know not all parents can journey to Mongolia, and so this works better as a travel memoir or an anthropological study of shamanistic rituals in Mongolia than it does as a book about how to resolve your own child or your own neurological tempests and troubles. But the fact that it was such a popular book (and film) testifies to the power of these types of stories to educate. Knowing that thousands, if not millions, of people read that passage above about how curing is a fool's errand and were asked to consider autism's gifts made me feel hope like never before.

As I continue to delve into the world of new age thought and autism, I wonder if I will discover more examples of this, of autism being seen as something more, something special. Not just a series of sturm & drang in need of desperate curing.

In the meantime, pick up the Horse Boy for yourself if you desire. The profits towards the book go into this cause.

New Age & Autism Part One: The Horse Boy (Book review pt. 1)

My very first instalment in my series on New Age perspectives on autism begins with the book and movie of the same title, The Horse Boy, the book being written by Rupert Isaacson, the movie directed by Michael O. Scott. At the centre of both though is Rowan Isaacson, son of Rupert and Kristin. He is the titular "Horse Boy" and he has autism. The book and film both chronicle his parents taking him on a special trip to Mongolia to consult with traditional Mongolian shamans, in hopes of "healing" Rowan from his tantrums and incontinence, as well as helping him become more social and less agitated by overstimulation. The idea is that the combination of riding horses and shamanistic healing will benefit Rowan emotionally and physically.

For the purposes of this review, I will talk about the book only, and deal with the movie in a separate post.The book was written in collaboration with the movie, because the funding for the trip was made possible with the promise of a movie out of it, and the book deal accompanied it. I read the book first (A present from my boyfriend after a trip to our local Chapters) and saw the movie courtesy of Netflix Instant Watch.

The Book

Here's the good and bad about the beginning: I begged for my boyfriend to buy me this book because I saw a quote from Temple Grandin, arguably the most famous autistic person alive today, who endorsed it with hearty praise, citing it as a worthy book for those who wished to understand the connection between autistic humans and animals. Since I value Temple's opinion, I figured the book would be neurodiverse positive. However, in the back (I tend to read the backs of nonfiction books first, to see the sources used and acknowledgements) the very first "Recommended" place for more information was Autism Speaks. Normally I would reference exactly what they said, but I was so enraged by the endorsement of Autism Speaks that I tore out the page mentioning them and ate it, much to my boyfriend's shock and fright... *blush*

But other books on autism that I've cast my seal of approval upon had mentioned Autism Speaks in passing. It was certainly a major knockoff of points off their score for neurodiversity, but they made the cut, like Roy Richard Grinker's Unstrange Minds: Remapping the World of Autism.

So I persisted, and began reading. Immediately after Rowan was born and Rupert began describing him, I began to feel apprehensive. He said he felt "Grief, shame- this weird, irrational shame, as if I had somehow cursed this child by giving him my faulty genes, condemned him to a lifetime of living as an alien because of me." when it was discovered that his son was autistic.

I can understand how these feelings are relevant to a new parent who does not know much about autism. But the detailed description creeped me out- it fit the rhetoric of Autism Speaks perfectly: Autism steals, autism is shameful, autism is a curse, autism is no hope. Autistic genes are "faulty". It was not a good start. I suppose it is because I have yet to become a parent myself, but Isaacson's feelings were completely alien to me, and I could not at all sympathize to that sentiment upon his son's diagnosis.

But I do appreciate Isaacson's honesty. It continued when, upon bringing Rowan home from the hospital, he and his wife dreamed about their aspirations and hopes for the newborn: "Kristin... indulged her own fond images of someday engaging in long spiritual and philosophical discussions with her intelligent, spiritually and intellectually precocious son." or, "... already imagining how I'd teach him to ride, share adventures on horseback with him." perhaps I am reading into this incorrectly, but I gathered from the way that this memoir was set up was that this was foreshadowing to the fact that Rowan, as an autistic child, would NOT be fulfilling his parents' dreams and ambitions.

I'm going to deviate a little here and just mention that while it is understandable for parents to project dreams and ambitions of their own upon their children, the Isaacson's example serves as a perfect demonstration as to how flawed it really is, and only precipitates extreme disappointment. It's not just for autism either. Dream of your child becoming a star basketball player? What happens if an accident or disease physically disables them, or they're just not that interested, or their hand-eye coordination doesn't develop properly? Imagining troves of grandchildren and a beautiful white wedding for your daughter to a prince charming? What happens when your daughter comes out of the closet and/or gets her tubes tied? When we do these projections, we almost inevitably base it upon the assumption that our child will be able-bodied, neurotypical, straight, and cisgendered. They're also often based on the idea that the child will grow up sharing and adhering to our own values and morals. It starts from an early age, and continues until something "wrong" occurs. Rowan's autism is one example of this. But what a world it would be, if instead of considering their dreams crushed, parents everywhere took these revelations as a chance to open up new dreams and let their children take their own path in life. It would make a world of difference in the outlook not only of the parents, but of the child as well. Even children that are thought to be emotionally devoid or inattentive to the feelings of others, it can be sensed when one is considered a disappointment or a splotch on the perfect plans of our parents. The psychological effects of this realization are downright traumatizing.

When Rowan's autism begins to manifest itself, in tantrums, lack of pointing and eye contact, and delayed speech, Isaacson documents their attempts to understand why he is acting this way, seeking therapists, grandparents, and friends to offer advice or reassure them that it would pass in time. But as Rowan continues to show signs of autism, the damaging rhetoric begins to start up again, full throttle. "Our boy, our beautiful boy, was floating away from us, and there was nothing we could do." Chapter 2 opens with the words "We had a special needs kid. We had become one of those families."

Excuse me? One of those families?

It was then that I began to think, and was correct in thinking so, that this was all going to go downhill from here. It is one thing to document the struggles your family faces upon a new diagnosis of autism or any type of disability, and how it affects your life and the way people treat you. It is another thing to treat it like a scarlet letter affixed to your forehead which is cause for shame.

The rest of that opening entered much more familiar and sympathetic territory: A parent's search for the right information, and fighting back against the sea of red tape that has come to characterize seeking assistance from the government in America when it comes to therapy and medical assistance.

Even with two college-educated parents, one of whom held a PhD in Psychology, it was still a taxing, terrible uphill battle. ABA, the most commonly accepted treatment for autism, would cost them $50,000 a year. To give you an idea, in 2003, the median household income in Texas was $40,934 from 2001-2003. * Even two college-educated parents pulling a decent income would not be able to afford such an expense, and those that do are often reduced to extreme poverty to attempt to cope with the cost. It is something which perfectly displays the way our society has failed to assist families and individuals who need help managing with their disabilities.

During a talk about the costs of ABA, Isaacson and his wife talk about Rowan "recovering" from autism. At one point, Isaacson reminisces about two autistic boys that he knew while attending a Waldorf School in the UK, where he grew up:

One, Simon, used to regularly strangle the other kids and had to be pulled off of them by force now and then. He'd stand and flap and screech. He had once set fire to the school. The older one, an older boy called Robert, used to get his penis out in the middle of the crowded highways, masturbate wildly, and shout "Cock-a-doodle-do!" at the top of his voice.

Would that be Rowan?

As I read this, I felt nothing short of sorry for poor Rowan. Not because he may end up one day flapping and screeching or doing public exposure, but because his father had so little access to positive images of people with autism that he thought there could be no worse fate than being autistic and ending up like those two boys (Note, I don't believe in making autistic people act neurotypical in order to make neurotypicals uncomfortable. But I do believe that endangering other people or sexually harassing them is unacceptable)

As the book continued, I got treated to a detailed description of what they did to Rowan to treat his autism, and my most hated enemy, chelation, showed up. It was described in the book as rubbing on a sulphur-smelling gel onto Rowan with much resistance, and it was casually noted that chelation "took the good stuff out with the bad". I couldn't even imagine what terror and misery that being subject to chelation (Which can kill, by the way ) But it did not end there. Isaacson also fed Rowan Valaciclovir, more commonly known as Valtrax, a herpes medication, and a plethora of self-described sundry homeopathic supplements. To make Rowan agree to taking this foul concoction, they fed him extremely sugared chocolate milk, which of course worsened his hyperactivity and tantrums. Uh?

I'm already on record as to why I despise chelation, and homeopathy is downright quackery. I was trying really hard to forgive Rowan's parents for doing this, since they could not afford ABA and were unsure, but I do not see this as a parent. I see it as one of those people who, if I had been diagnosed at an early age, probably would have been subject to the chelation and pills. And the thought of choking down a variety of non-regulated supplements and herpes medication in an attempt to make me act more neurotypical gives me nightmares. What they did, even if it was out of a combination of misinformation and desperation, was unacceptable. The entire industry of autism cures is held responsible here, but Rowan is the one who suffers most.

I also took issue with Isaacson unquestioningly repeating claims about autism having an environmental cause, as well as looking to Simon Baron-Cohen, who is not particularly popular among the neurodiverse community, for answers to the "cause" of autism. He did not bother to dispute the claim that autism is linked to heavy metal poisoning or another environmental factor, not even a paragraph.

Considering how much press this book got, as a New York Times bestseller, this is extremely problematic. It aids the continuation of autism misinformation, and I believe something Isaacson could have done best to help not only his son, but all autistic people, was to include at least a paragraph admitted that the smelly solvents were not the solution, and that it is now common fact that chelation is dangerous and deadly.

I began to ease into the book more as it transitioned from bemoaning Rowan's autism to describing his great enjoyment of their backyard and the two zoos in Austin. This was something that brought me back to my own childhood, where I was comforted by outdoor adventures in Hawaii, Vancouver, and Montana with my parents. The quiet of the forests, the comforting rhythm of the ocean, and the smells, sounds, and sensations were the ultimate remedy to the over-stimulation of school and everyday life in a very busy town. One of my favourite things to do was to sit in the grass, look up, and admire the pleasing patterns of leaves and light breaking in through each other to form a type of mosaic, or else swing about on a rope swing. Being outdoors calmed me, and allowed me to collect my scattered thoughts.

These outdoor trips lead Rowan's parents, particularly his mother, to use his love of animals as a gateway to getting him to open up and excite him, to fantastic results. Coming home to see his room covered in animal posters, he was overjoyed, and was thought by parents to kick-start his imagination, using the posters as a springboard to tell stories about Rowan and his adventures with animals. I felt that this was the best part of the book so far, closer to what Roy Richard Grinker had done to help his autistic daughter flourish in Unstrange Minds, Remapping the World of Autism, through art and cello music.

It is during this episode that Rowan is discovered to have a rapport with a particular horse by the name of Betsy. Isaacson, having been raised around horses, believes that his son has a direct link to horses, and becomes determined to use Betsy to open him up and relax him in a way ABA failed to. This is also a time, during a Shaman's conference, where Rowan is exposed to Shamanistic medicine. Isaacson concludes that if Rowan is positively affected by both horses and Shamanism, the logical conclusion is to take him to Mongolia, where Shamanism and Horsemanship is combined in the local tradition. With the promise of a film deal (And this book) and after getting the consent of his wife, Isaacson, her, and Rowan set off via the UK to Mongolia.

In preparation for his journey, he meets with Temple Grandin, who offers an explanation for why the horse therapy has helped Rowan so much, and gives her his blessing for the journey to Mongolia. Just before they leave, Kristin Isaacson describes her son as "a born Buddhist", since he lives in the moment, doesn't take things personally, and doesn't suffer after the fact the way neurotypicals do. A rare deviation from the usual language of autism as a burden, turning to focus on Rowan's gifts and how his differing perspective can be a true blessing.

While on the way to Mongolia, Isaacson muses that he did not want to "cure" Rowan any longer:

Cured as in not being autistic anymore- for that was part of his essence. But I did want him healed. If there was anything Kristin and I wanted to say to the shamans, it was Please let him come back toilet-trained. Please let him no longer be held at the mercy of his tantrums, of his wild-storm nervous system. No longer hyperactive, with that incessant edge of anxiety that was like a fist around the heart, always ready to close suddenly and hard.

I'll be a bit honest here, deviate from the material, and just say this plain confused me. I have never really understood, as a skeptic with no real religious ties, the new-age obsession with healing. I've been offered multiple times by friends and acquaintances to be "healed" in some fashion or another. When I think of the word "healing", it seems to have the same properties as curing, only with a slightly less medical implication attached to it. I admit I can sympathize with the idea of putting Rowan in less pain, since I have many sensory issues that sometimes make it difficult to happily function in the everyday world. But I am still uncertain whether "healing" would be the word I would use, considering its baggage.

Part two of the review will detail the actual journey and aftermath in Mongolia.

* Source: http://www.census.gov/prod/2004pubs/p60-226.pdf Page 21, Money Income of Households by State Using 2- and 3-Year-Average Medians: 2001 to 2003

Post-Traumatic Stress Disorder & Me

Trigger warning for discussions of assault, sexual abuse and trauma

I forgot to mention in my previous post about Obsessive Compulsive Disorder that I was also diagnosed with Pica and Post-Traumatic Stress Disorder. At the time I did not point it out because while the diagnosis of OCD was new to me, I had already guessed that I had both pica and Post-Traumatic Stress Disorder. The news was just that I was now officially diagnosed, and therefore perhaps could be taken seriously when I voiced my concerns about how they manifested themselves.

In my adult years, I've learned to manage my Pica, and it is no longer pressing for me, apart from the occasional binge on kool-aid powder when things aren't exactly going my way.

However, my PTSD is relatively new to me. If I were to pinpoint the exact time in my life when it began to manifest itself, it would be around the age of fourteen, at a time where I was forced into a terrifying scenario where two different people in my life took advantage of their authority over me in different ways.

One used his status as a "friend of the family" to sexually assault me when we were alone together several times, leaving me frightened and unsure what to do. The only response I ever got to my obvious discomfort around him when others were present was being chastised for being "antisocial" and "rude". The other one took advantage of his position of authority in my life to terrorize me, frightening me by swinging a baseball bat over my head, manhandling me, screaming in my face, and threatening to hurt me or break my possessions, telling me I was worthless, ugly, stupid and fat, blaming me for my mother's alcoholism, and telling me that if I wasn't "careful" I would end up kicked out of my own house.

After going through that horror on a near daily basis, I began having nightmares, wetting my bed, withdrawing from being hugged or touched by people I love, and obsessively eating. I was getting, on average, about 5 hours of sleep per night, the rest being spent in terror and shaking.

It receded somewhat after I left my hometown to go to university. Towards the middle of university though, when I entered my junior year, a single incident made my PTSD come back full force, landing me in the hospital briefly for a strong anxiety attack.

Since then, it has managed to get worse and worse, but there was never a name for it to the doctors until now. It wasn't until I admitted the incidents described above that it became clear to the doctor what the cause was.

But having an official diagnosis has not alleviated the nightmares or the anxiety. I continue to have nightmares, I continue to resist being touched, and I continue to be fearful and mistrusting of people.

PTSD has affected my life in many ways, both subconsciously and consciously. One of the most obvious ways it affects my life intertwines with the way that autism impacts my life. Being as I am, I avoid eye contact and I have an obvious aversion to the social activities which seem to act as staples of life for people in my age group: Clubbing, partying, music concerts and drinking copious amounts of liquor are all activities which I steadfastly refuse to partake in, unless roped in reluctantly, which happens more often than I should like.

This is obvious to any other person with autism: Such venues are noisy, unpredictable, and often involve an unfamiliar environment chock-full of sensory overload. Vomit, sweat and liquor smells, loud music, flashing lights, sticky floors, and other people crowded against you are a sensory overload nightmare, and can end unpleasantly for all parties if it overwhelms you.

Another reason I avoid them though, is because I have a particularly strong aversion to being touched by anyone without my permission, and something as minute as a hand brushed against me could leave me panicking. The strongest factor in my avoidance though, is my concern for other people. When I am triggered, I get really violent. Screaming, scratching, and biting are beyond my control in such scenarios, and I fear not only my personal safety and mental health being compromised, but the safety of others.

This fact breaks my heart. In spite of my aversion to social events, I enjoy having friends and people I can connect with, and knowing that I pose a danger to them if I am triggered saddens me greatly.

Having an official diagnosis, I hope, will help me find a way to control my own mind and reactions to a degree, so that I can have independence over my life and emotions.

But the last barrier I feel I will have to cross over is not from my own disability, but rather, the public perception of disability. Once again, like OCD and autism, PTSD is a widely misunderstood and mis-characterized disability. And little sympathy is reserved for those who have it, even those who got it "honourably" in combat or a similar field. Regardless of what caused it to manifest though, I think it is important that I be vocal about the fact that I have PTSD. It will be less likely to be as radically misunderstood if a person you know, a person familiar to you, has it, rather than it being an abstract concept for television or a movie.

Nostalgia Critic's Apology: Nice effort, but....

Trigger Warning for Disablist Language

The Nostalgia Critic, one of the most popular, if not the most popular, incarnations of That Guy With The Glasses, a famous internet personality who does what most of us have been dreaming about since the age of 11 (Well, at least I have): Having a massive fan-base and millions of hits for the virtue of recording videos pointing out just how asinine/impractical/condescending some movies can be.

I admit it, in spite of the times that they gaffe with disablist language and other fails, I'm a huge fan of the Nostalgia Critic, and other personalities on the site, like Film Brain, The Nostalgia Chick, and especially Linkara, who won my heart with his feminist criticism of comic books.

The Nostalgia Critic angered me greatly though, when during his Earnest Saves Christmas video, he made a cheap joke at the expense of autism. Mercifully though, he was called out on this by autistic and neurotypical fans alike, and removed that segment from his review of Earnest Saves Christmas, and apologized in this video pointing out his "fuck ups": http://thatguywiththeglasses.com/videolinks/thatguywiththeglasses/nostalgia-critic/27822-the-next-top-11-nostalgia-critic-fuck-ups

It's the #1 mistake, and the fact that he apologized gladdened my heart.

However....

His apology had some major mistakes, and I think it is only fair that I address them honestly, as an autistic person and a fan of his.

I am glad that he apologized at all. Most people who insult autistics and autism never apologize, they just moan about political correctness gone mad. But it is not okay to have your apology framed around the idea that there are "high functioning" autistics, as well as "low functioning" autistics (For more on why the terms high functioning and low functioning are not appropriate, check the post I did at Womanist Musings: http://www.womanist-musings.com/2010/07/fully-funtional.html)

To suggest that "Oh, there are autistics who are smart, act their age, and can talk and aren't amused by puppet shows, therefore I shouldn't have made this joke" devalues people who do not "pass" as neurotypicals as easily as people with Asperger Syndrome do. It draws a false value upon intelligence and verbal ability, suggesting that only those who act just enough like neurotypicals are worthy of being treated with respect, dignity, and kindness. Maybe that's not what he meant, but that was the impression I got when he mentioned that. It felt really jarring and wrong, like "Sorry that you auties who were smart enough to figure out I was insulting you were hurt, from now on, I won't do that. But I still don't think too highly of the value of people like you who can't talk or live independently.

And then there's his mention of "I know autistic people". Without playing oppression Olympics, it's been debunked enough times when someone says "Oh I have gay friends, so it's okay if I espouse homophobia" or "I have black friends, I can't be racist." It's just as inexcusable here.

Once again, I could be wrong. He could be pointing out that he knows people with autism who are not amused by children's puppet shows, but once again, this is drawing that false value upon people with autism who can talk and "pass" as neurotypical, suggesting again that people who may be amused by puppet shows are in fact worthy of such mockery.

I'm sure he learned his lesson and will never make an autism joke again. But I am hoping that the next step will be respect for all people who are non neurotypical.

Like one disability that is radically misunderstood by the general public wasn't enough!

Today, during what I thought was going to be a routine examination, I had a big piece of news dropped upon me by the doctor. She diagnosed me as having Obsessive Compulsive Disorder, an anxiety disorder that is familiar enough to the general public by name, but remains as widely, if not more, misunderstood than ASDs.

I had actually before been diagnosed with OCD, at the age of five by a medical practitioner in my hometown, after I showed "strange" behaviour in school. But my mother didn't agree with the diagnosis, perhaps out of embarrassment, or out of a misunderstanding of OCD meaning that I should have kept my room spotlessly clean, and she didn't put any more thought into it. The last time it was mentioned was when I was diagnosed with Asperger Syndrome, and my mother was so embarrassed she didn't even mention it by name, and wrote down what the Doctor had diagnosed me with and passed it to the psychiatrist without giving me a chance to look at it. It was only by my own snooping and invoking my right to know my own medical history that I learned of this later.

So naturally, I was familiar with the possibility, but had not given it much thought. Much of my behaviour that is the criteria for diagnosis was behaviour I dismissed as being related purely to my Asperger Syndrome, rather than a signal of another disability. Nervous habits, highly ritualized behaviour, an aversion to mixing food on my plate, the need to knock the walls in a room with my knuckles before sleeping in it, clawing and kneading clothing, furniture, and wallpaper to calm down, sanitizing my doorknobs, and having to touch my laptop, bedpost, or toes before remembering something all sounded like something that a typical aspie experienced to me. I have many other ways of filling the criteria, but they're either extremely triggering, personal, or downright embarrassing, so I am opting out of sharing it on this blog. But with a bit of independent research from the library and going more into detail with the doctor, I decided that the diagnosis fit, and I've now accepted it. In addition, with no surprise to me, I received a diagnosis of PTSD and Pica, both of which I already knew or suspected I had, but had not obtained an official diagnosis for until now.

I'm anticipating many changes in my life owing to this diagnosis, mainly in my perception of myself, and how my disabilities will affect the way I am treated by society. I'm hesitant about fully "coming out" as being Obsessive Compulsive, because I worry not only about minute things like being jokingly called "Mr. Monk" and asked if I mind a lamp being moved three centimetres, but big things like being dismissed as a liar because I do not fill the common stereotypes of an obsessive compulsive, who are portrayed as being hygienic and orderly to a fault, which I certainly do not fulfil.

But every new thing I learn about my brain and the nature of disability is a door opening for me. This gives me a chance to learn why my brain works the way it does, how it works, and how I can best use that particular mode of functioning not only to lead an optimally happy life, but also to help others who may have multiple mental disabilities. Without looking up any of the numbers off-hand, I'd say we're probably more common than people give us credit for. And the more we speak out, the more difficult it becomes to continue to stigmatize and isolate us.

On living on my own, its challenges and joys

Last month, I moved into an apartment run by my university, as a way to get out of dormitory life and see if I could manage on my own effectively. I've always been really frightened, yet fascinated, by the prospect of living on my own. I am fully aware of my own limitations, but I've always had confidence in my ability manage, so long as I was given support.

Curiously enough, the biggest barrier thus far on my journey was not anything I was expecting. It was a simple matter of not getting the emotional support and encouragement that I craved as I set off to live here. I was told that I wouldn't be able to manage, that I would starve because I was a bad cook, that I would not be able to pay my bills on time or commute from my place to university. My mother often would send mocking emails to relatives, saying she was anticipating how many months I would last, knowing that I was so dependent and weak, and didn't know how to take care of myself.

That has been, quite honestly, the most crushing aspect. It led me to become extremely depressed and frightened, and for a while I thought about dropping out of university. It was only the encouragement of friends and loved ones that believed I could manage who pulled me out enough to permit myself to give it a try. But the difficulties continue, in other ways.

Two weeks ago, I lost my job, and I've been trying hard to find a new one. But no job means no money, and my bank accounts were of course drained by textbooks. So I've been living off of food from the food bank, donations from kind friends, and my lovely room-mate. It has been a lifesaver, but at the same time, it is exceptionally difficult to live off the kindness of other people. When I went to the food bank, the selection of fruits and vegetables was tiny and sad, and most of the fruit there had been rotted in several areas. So I stocked up on bread items and canned foods.

Had I been forced to do this when I was younger, I probably would have starved, because of my serious aversion to canned food, and my hatred of any bread that wasn't a particular brand of sourdough. For someone else with a disability involving eating sensitivities or certain intolerances, it would be an even worse situation. Someone with a gluten intolerance would have a hard time at the food bank, as would someone with diabetes, or a plethora of food related difficulties.

Had I still been living in the dorm, I would have had my meal plan to depend on upon losing my job. But now, I am compelled to make my own way in terms of food, and I'm very lucky I am managing. Other people do not have the same privileges that I do. 27 percent of the families in my town live below the poverty level, 34 percent of single women live below the poverty line. How many of them are disabled, or have children with disabilities? It would be astoundingly difficult for them to manage with the limited foods available.

Getting a job in and of itself is difficult for a person with autism. I am limited as to what kind of jobs I can take on. Several reasons are because I cannot drive and therefore need to stay within walking/biking distance of my house, I have difficulty dealing with "flexible" schedules, preferring a routine set in stone, and difficulties socializing. This rules out a lot of jobs in areas that require certain skill sets that are beyond my job grasp. I'm not the only one feeling this pain. According to the Center for outreach and Service for the Autism Community {COSAC} 90% of adults with autism are unemployed, compared with other disabled adults who have a 75% unemployment rate. These odds are not particularly optimistic for me, and the clock is ticking. I am hoping with the help of several disability organizations in my town, I can find a job, in a field where I can use my skill set without having to worry about my shortcomings.

Other difficulties are present in apartment life. I have difficulty navigating streets, so having to lay out a new mental grid as to where everything is relative to my location has been difficult. Sleep difficulties are plaguing me (I've entered in a raffle to win a weighted blanket for this reason) and my hermit-lifestyle is being interrupted by invitations to clubs and parties, which I accept to be polite, but I'm not too sure about how well I fit into that particular lifestyle either.

The joys though, are overwhelming. Having my own kitchen for making tea, not having to share a toilet with 40+ other girls, having a space of my own where I can stim and relax without disturbing my room-mate, and having a couch where I can nap has been a wonderful experience. I'm interested in seeing how it all unfolds in this last year of undergrad university here. But so far, the challenges have not out-weighed the wonders.

Scary Monsters, or New Angels of Promise: The New Age perspective on Autism, pt. 1

People who know me very well know that when it comes to my personal beliefs, I am a dyed-in-the-wool skeptic. I cast a critical eye over everything that comes to my attention, meticulously prying it apart until I can make an accurate assessment about its validity. Nothing escapes my criticism, and it is through this lugubrious system of trial and error that I came to many of my viewpoints today, such as neurodiversity, fat acceptance, antiracism, and my attitude towards religious fundamentalism.

A big part of my skepticism stems from the fact that I, as a person with autism, have been frequently targeted for a variety of false claims and promises of miracle cures. Everything from chelation to herbs was offered as a way to transform my grouchy, taciturn, stuttering persona into that of a bubbly neurotypical. But my skepticism is not always aimed at the usual targets. It's easy enough to see why I would rail against the likes of Andrew Wakefield and Jenny McCarthy, who have turned autism from being a hush-hush topic into an explosive debate surrounding, not the welfare of people with autism or how to improve their lives, but chasing haphazardly after something which isn't there, a single, definitive environmental cause which could, if identified, stop it in its tracks.

Doesn't work that way, folks. Plus, it's squandered endless airtime about autism on something which in the end, isn't even about autism. It's about the ego of celebrities getting out of control. But McCarthy and Wakefield found a comfortable audience in the first place amongst this society, which mainly understands autism through the Medical Model of Disability, or the belief that disability is inherently harmful and disadvantageous, which means much time is spent figuring out the two C's, cause and cure. Even when it would be cheaper and more convenient in the long term to simply modify attitude, behaviour, culture, disability awareness, and environment (My own ABCDE) the medical model dominates. That is why, in the less alt-med-soaked sectors, charities like Autism Speaks are still treated as the number one source of autism information. It's a problem that is not limited to advocates of chelation and oxygen chambers, the cause and cure attitude can be found in nearly every mainstream discussion of autism.

That is why I was curious and intrigued when I discovered that there is an entire subculture of New Age thinkers who believe that people with autism are not diseased, or even disabled. They consider them to be, depending on the interpretation, messengers of some type of God, psychics, people with special (read: beyond human, such as telekinetic or telepathic) abilities, or mind readers. Among those is self-diagnosed person with autism William Stillman, probably the most famous of the people promoting this alternative view of autism.

After years of dealing with the medical model, and endlessly being forced into a dunce cap for the sake of one charity or political cause or another, the tone of that seems downright seductive. Being told, after endless parades of doctors, discredited doctors, charities, and other organizations telling you that you are an empty husk, that you're "vaccine-sickened" or that only many years of ABA are your only hope to ever achieving happiness, that you are special, that you go beyond special into a category that's downright mystical and holy, can cloud a lot of people's judgements. Even the most cynical aspie like me softens at the idea of developing this new way of thinking that celebrates rather than vilifies autism and disability.

But I'm not going to leave this warm feeling unattended. For the next few months, or however long it takes me to do so in a thorough, honest manner, I am going to examine the literature and media surrounding this new age attitude towards autism. What can we learn from it, and how much of it is worth considering? Can elements of Stillman's philosophy replace the medical model of disability? Or are they both equally harmful in different ways.

If you have any recommendations on literature or media which reflects this type of thinking that you wish for me to review, please recommend it in a comment. I am going to try to look at this with complete honesty and as little bias as I can manage, while still maintaining a thorough and rigorous analysis.