Travelling while Autistic

I am back in my university town, after a long trip spanning the Pacific Ocean. Having now returned, I plan to resume blogging at a regular pace, and continuing with my feature on critiquing portrayals of autism in film, literature, and other media.

First though, I want to note something about travelling while autistic, especially across international borders. It is not easy. These days, flying is difficult enough for neurotypical travellers, but for those of us who are disabled, it takes on a whole new level of struggle, humiliation, and anxiety. My own experience is negligible, but others go through sheer terror in their effort to get from point A to point B.

During this particular trip, I left the United States to enter Canada, which led to me being exceedingly worried. I am honest to a fault when talking with strangers, but I manage to give off an air of insecurity and slyness, owing to my unwillingness/inability to make and maintain eye contact, my monotone, mumbling voice, and the shaky, jerky way that I move, even when standing still. This time went without a hitch, but other times I have not been so lucky. I've been thinking of buying an enamel pin with a phrase like "I have autism" on it, just so I have a clear indicator to them, provided they take notice.

Other things which overwhelmed me included the constant noise interference from various announcements, being in close proximity with other people, and the one I remember with the most discomfort is the fact that during one plane ride, I sat next to a fellow who was eating a sandwich that had mustard and mayonnaise on them, causing a sensory overload to my nose that left me in tears, and would have escalated if I had not come prepared: I had bought a bag of bliss chocolates at the airport, and made sure, every time the stench began to overwhelm me, to stuff a chocolate into my mouth and let it melt slowly on my tongue. The chocolate's smell in my mouth drifted up to my nose and blocked further offences to my delicate olfactory system, one every five minutes.

I know these seem minor to neurotypicals, but to someone with autism, sensory overload and worrying about public discomfort that may or may not result in a loss of control are an every day reality. Or wanting special food to fit with sensory issues, and being told you cannot take food or drink past a certain point. Or having your medicine scrutinized and your privacy invaded. Being told you need to submit to a random security check when you have issues with other people trying to touch you or invade your personal space. Being asked questions in a rapid fire fashion with no clue how to answer, especially if you are nonverbal or have difficulty communicating. I could go on and on.

Normally, on these types of entries, I try and end with a note to my fellows on the spectrum on how to best deal with the situation. The chocolate, for instance, or bringing along a comforting object, or a weighted blanket. But this time I want to stress something else, something that is often neglected: While these small comforts and steps are a good way of avoiding such trouble, we should not HAVE to go through the worries about whether our steps will be enough. Public spaces, even ones like airports, where security theatre seems to take priority over comfort and accommodation, should be held responsible to, to make their spaces welcoming to all people with disabilities. Ramps for wheelchair users and doorways wide enough for accessibility are good, but what a world it would be if ways of making people with both mental and physical disabilities feel welcome wasn't a nuisance to be ignored or begrudgingly followed, but carefully considered and applied as such! An environment where people with disabilities are comfortable is an environment where everyone is more at ease and content.

For now, it is good to be home. I consider myself lucky (and TAB privileged) that I was able to navigate my way home with such ease. Others are not so lucky though.

Early Intervention: My two cents and my many apprehensions

Often, stories of early diagnosis and early intervention will be the most popular in mainstream news about autism. There will be triumphant headlines announcing that you can now detect it earlier and earlier, even showing signs in babies.

The way I see it, early detection is the ultimate Pandora's Box for people on the spectrum. Those of us who are a bit more aged certainly remember the nearly unimaginable loneliness of living without a diagnosis, I myself was fortunate enough to be diagnosed at age 14, but some older ones did not obtain a diagnosis until adulthood, and many autistic adults today may be living without an official diagnosis.

It is not just a deeply crushing personal crisis, wondering why you are different and what makes certain aspects of life so painful compared to how others seem to experience it, but it is one that denies people the chance to seek assistance, accommodations, medical help, and, perhaps the most overlooked, a sense of belonging and peace of mind that comes with knowing. I now cannot comprehend not knowing I am autistic, the thought of being stripped of this knowledge makes me quake in the knees.

So some aspects of early intervention I look upon with envy. I think about all that I could have accomplished and how far I could have progressed, if only they had known the reason for my difficulties in school and socializing. How my deficiencies in mathematics could have been addressed, proper motivation given, educated in a language that was not alien to me. I can't help but feel elated knowing that my own future children, should they be autistic like their mum, end up with so much more potential and support than I could have ever dreamed of.

The dark side to early detection though, strikes me each time a story about it is announced. Under that hope for making the world of people on the spectrum seem a brighter place, there lies a dark glimmering hint of unscrupulous, anti-neurodiverse applications. The earlier the detection gets, the closer we seem to get to the Holy Grail of organizations like Autism Speaks: A prenatal test for autism.

Let it be known that I am pro-choice. If a woman decided she was not up to the task of raising a child with autism, I would not object if she opted to choose an abortion.

But I still shudder at the possibility of a prenatal test for autism, because I am certain it would spell doom for neurodiversity. If a prenatal test were developed, and entered the standard battery of tests run on foetuses, it's quite possible that the standard response to a positive autism detection would be abortion. With autism being so widely misunderstood, and the mainstream disablist view seeing autism as a tragedy that can only be dealt with through years of ABA and pain for the parents, teachers and doctors, not a thought would be given to the potential for a thriving, healthy existence a child with autism could possess.

It is not because I am against abortion. I am against the disablist notion that it is more 'merciful' to abort children with disabilities, rather than letting them 'suffer' through life. A lot of lip service is given to what a financial burden disabled children are to their parents. Very little is mentioned of what we as a society could do in the form of how we spend our tax dollars to ease this burden. In a society where all contribute to a better quality of life for all, disablist attitudes will no longer prevail out of a love for money more than quality of life for the vulnerable.

My other apprehension about early detection and intervention lies in the fear that too much emphasis will be placed on making the child "pass" as neurotypical as often as possible, without a regard to whether that is best for them emotionally or psychologically. I also worry that early detection may serve as a justification to isolate children on the spectrum from their neurotypical peers. Nothing worse can be done for both parties than to separate them. Neurotypical children who are not exposed to children with disabilities at a young age grow up to be adults who fear and pity people with disabilities, not understanding them and seeing them as less than human. If they learn from an early age though, that classmate Suzanne is different, not less, because she's autistic, or has ADD, or is blind, or a wheelchair user, their whole perception of what it means to be normal and worthy of respect and friendship will be permanently offered.

That is one of the advantages of early detection, it will give children a sense of pride in being themselves early on, when applied scrupulously and properly. With the right minds and the right intentions, you don't have to make sure a child "passes". You can ensure however, that she will thrive, that something will capture her heart and her passion will lead her on a great path, that difference is celebrated rather than talked about in hushed tones.

It's up to us. Early detection will not go away. The science has great power to change our lives, and our children's lives. If you are autistic, or love and know someone with autism, it is your best interest to see to it that it results not in our demise, but a new flowering of neurodiversity that will bridge us all to the rainbow connection.

Anxiety ≠ vulnerability, weakness, or incorrect thoughts

“I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood.”

- Audre Lorde

One of the more difficult parts of expressing myself stems from my inability to communicate my thoughts fully when faced with hostile opposition. A lot of people, my own family included, seem to think that I thrive off of drama and near-theatrical displays of emotion, but nothing could be further from the truth. Confrontation, particularly that of the face-to-face variety, terrifies me. When I am faced with a person who is hostile to me or my ideas, I've been pushed to the point of an anxiety attack, being temporarily blinded, and having difficulty breathing. I don't find it fun or pleasurable to do so, it's a horrific experience I would not wish upon my worst enemy.

And yet, I keep at it. When faced with belligerent trolls or antagonistic souls, I type up my rebuttal, even as my fingers shake and my heart rate speeds. In the event of someone doing something similar face to face, I try and keep a sturdy, even voice, and continue making my point even if I am reduced to tears or end up involuntarily stimming to get rid of all the stress it causes. If I lose the ability to speak coherently, I type, or write down my opinion.

I've come to both derive great pride from this endurance, and a sense of curiosity as to why I keep at it. In many of the cases, my tears and anxiety are taken as signs that my opinion is subjective and not worth considering, even on subjects which I have the most informed opinion on in the group, such as, surprise, autism. I'm told that I'm "weak" and "hysterical", told that I need to consider things more objectively, and addressed with condescending pet names like "Sweetie" or "my dear". At points like that, I wonder why I do not stay silent, fearing that my words my hinder my position more than they would help.

Such thoughts are, however, poison to progress. If I were to remain silent, it would be assumed that I have nothing to say, or worse, that my opinion doesn't matter. One of the core mottoes of disability advocacy that I have absorbed is the ever-profound "Nothing about us without us." In a world where the majority of the international conversation about autism happens without the input of autistic individuals, this thought is downright revolutionary. I'm not as eloquent of a speaker as a neurotypical doctor or a neurotypical parent of a child with autism. I don't have the charisma and stage presence that is usually demanded of public speakers, and since I am completely immersed in autism, rather than being one or two degrees removed from it, I am bound to have an emotional reaction when that part of me is so fundamentally misunderstood, skewed, or abused. Contrary to popular reports, I am, after all, only human.

This idea that we cannot get involved in the debate because it is too personal to us, or that we "can't look at it objectively" or because our emotions are too strong, is ridiculous and hurtful. It implies that there is such a thing as an objective observer, when, regardless of the subject, that's near impossible to achieve. Humans are flawed, biased beings, and in the conversation about autism, you cannot be objective. Objectivity is simply a better sounding alternative buzz-phrase to "ignorant" or "uninterested in the repercussions these decisions will have for people."

My tears and my panic attacks are not weakness or a sign that my opinion is not valuable. They indicate that I have a long history with this discussion, and I have opted to continue the dialogue, even at the cost of my emotional control, because it matters to me that much. That's all.

Picky Eating and Autism

In TIME magazine, a small article discussed a connection between picky eating as a young child and autism.
The science involved in the article strikes me as particularly solid, and as I read on, I couldn't help but smile:

"But Emmett and her team say changes in feeding patterns, which can materialize as soon as several months after birth, could signal the presence of early autism. In some children with autism, their dietary choosiness is related to physical symptoms of the disorder — if they are unable to chew or swallow properly, eating becomes a frustrating challenge. For other children, the issue is sensory, which makes certain textures and smells of food unpleasant; some children eat only crunchy foods, for instance, while others will stick to a white-foods-only diet."

My dear sainted mother probably has many (un)fond memories of getting me to try new foods. Between the ages of 3 and... let's say very recently *cough* I was an obscenely picky eater. My favourite foods were pizza, pickles, frozen blueberries, and frozen peas, and I would often turn up my nose at the meals my mother cooked, and then, to her exasperation, I would switch my interest to raw flour or kool-aid powder. With that in mind, I think the only thing that this article missed the target on was a chance to mention that pica can also be a sign of autism at an early age. Pica and picky eating for me went hand-in-hand, so I believe it warrants a mention in an article about the connection between food, nourishment, and autism.

The article makes a note on how this can affect the overall health of autistic individuals. Of particular concern seems to be a possible lack of nutrients due to a picky eater's distaste for certain foods:

"Hyman is now conducting a more detailed study of the dietary habits of autistic children, and is planning to take the British study one step further in order to understand the longer term health effects of an unvaried diet in childhood in autistic adolescents and adults. Already there is evidence that children with autism tend to have thinner bones, and the current study confirms that kids with ASD consumed slightly less vitamin D than non-autistic children. "Taking in adequate energy doesn't mean you are taking in adequate nutrients," says Hyman."

The vitamin D consumption is new to me. I synthesized a lot of vitamin D as a child, being fortunate enough to live in a tropical climate where sunshine, and therefore vitamin D, was abundant. But I think consuming slightly less than non-autistic children isn't of much concern, because vitamin D is a fat soluble rather than water soluble vitamin, meaning it stays in your body rather than getting excreted out. A bit of sunshine a day during the sunny season, a bit of fortified milk in the winter...*

As for adequate nutrition, there are in fact several ways of working around my sensory issues with certain foods. Some of these are tricks I learned from my mother after I was an adult and she confessed how she got me to eat certain foods, others I picked up on my own trying to figure out how to make foods that were nutrient rich but tactile-displeasing to me palatable. People with autism of all ages, or, their parents/guardians, try these suggestions, or add your own in the comments. If anyone has a way of making tofu more palatable than dousing it with relatively large quantities of soy sauce, please, let me know!

Before we begin, I'd like to note that what displeasures I get from certain foods may not apply to all people with autism, and therefore my advice should be taken with a grain of salt. I'm not a doctor or a nutritionist, just an autistic girl concerned with eating healthy and not gagging.

+ In my personal case, foods that I cannot personally stand are foods with a moist, crumbly texture, like bananas. Bananas are an abundant source of potassium, vitamin B6, and vitamin C, so my mother was determined to get me to eat them. The way she accomplished this was by mashing the banana, and then putting it in the blender with ice cream, blueberries, and other sweet fruits I was fond of, so that I would not be bothered by the texture of the banana. Why not try and sneak the offending foods into a blender with some favourite foods, so the texture is eliminated and the taste subdued? This also, apparently, works with eggs, but I won't recommend that, because of salmonella concerns.

+ Another thing that really bothered me is temperature. I hated food that was room temperature and lukewarm, preferring frozen food, or food that was microwaved. If a food is refused at a certain temperature, try putting it in the freezer or the microwave to see if that elicits a more positive reaction to your taste buds?

+ Another offender could be the way foods sometimes merge, or "touch" on the plate. I refused to eat foods that touched each other and had to have separate plates for everything. It could have just been my Jewish ancestry asserting itself, but my real reason for doing it was my aesthetic displeasure, which elicited an undesirable reaction on my taste buds. Separate plates and silverware may seem like a chore, but it does make a difference. It also encourages more colourful, and therefore nutrient-rich, eating if you have multiple plates with multiple dishes. Take the chance of not having to deal with food bleeding into each other and looking disgusting to see if you can find an arrangement of colours that pleases you. I personally, after living in Japan, like to abide by the "five colours" rule, eating five foods of different colours at every meal. If you have some distaste for foods of certain colours, like yellow, or blue (My own personal colours of dislike in food) this rule can help you get creative in finding foods that do not violate your own sensory disgust, but are nutritionally dense.

+ Smell and sound can often spoil a meal for me. Not even the smell of my meal, which is inoffensive enough, but the smells of other people's meals at the table. That's why restaurants used to be a huge problem for me, I would get sickened by the smell of someone's quivering, disgusting scrambled eggs, the -squirt- of a ketchup or mustard bottle (I hate almost all condiments) or the smell and squeak of someone eating a rubbery fish. Try to avoid offending sounds from the table; If the sound of ketchup or mustard excreting from the tube or bottle poses a problem, serve them in dishes on the table. If you are cooking fish, then put some cinnamon in the oven on a cookie sheet, which cancels out the odour.

+ And finally, when dining out to eat, I recommend earplugs, earplugs, a favourite blanket, a handkerchief to cover the nose, and a favourite book. It will make the setting more comfortable, and make issues with anxiety less likely. Don't be afraid to ask for special modifications to a meal, including switching meats, asking for sauces on the side, or other custom instructions. Just make your request polite, and leave an excellent tip if you are at an institution where tipping is expected, in a country where tipping is the custom.

I'm certainly no expert on the eating habits of every autistic on the planet. But I hope my own experience sharing proves helpful.

Edited to add: As for the issue of pica (this is more directed towards parents of younger children) as long as the stuff is close to foodstuffs, like flour, or kool-aid powder, it shouldn't be a problem. If it is something that has potential to cause illness, like play-doh, sand, or grass, then try and find out what is pleasing about the texture of the object consumed, and try and replicate it through foodstuffs that are edible. Instead of sand, try making crumbly dough made of flour, sugars, and cubes of butter chopped finely. It will mimic the pleasing texture, but there won't be any issues related to consumption of nonedibles.

* However, some people with autism, the most notable being Donna Williams, have reported that as children, they had difficulty synthesizing enough vitamin D, even with the aid of sunshine, fish oil tablets, D-fortified milk, and vitamin therapy. If this is the case, talk to a doctor, becuase difficulty absorbing vitamin D can lead to weak, brittle bones, and if you are like me and stim a lot, weak, brittle bones can get broken during a calming session of stimming, or even just from day to day activities and movement. It's of top priority that you get enough vitamins and minerals, and that you are synthesizing them properly. A blood test at the doctor can determine if you are getting enough vitamin D.

Memories of admissions and that odious "Extracurricular activities" box

When I was in high school, I was a lousy student. I will be the first to admit it. I had a mediocre GPA, no extracurriculars that would make a good impression, and did not volunteer for any charitable organizations or events. I think I got into college purely because UM had low standards and because I can write one hell of an essay when the mood strikes me.

I was often asked, by admissions officers and other people taking an interest in my college future why I was so reluctant to sign up for charity work. My more ambitious classmates were devoting all their free hours to beach clean ups, volunteering at literacy programs, all the usual activities that look good on a resume or a college application. And that was exactly why I was not spending any of my time alongside them in those activities. Because that's all they were to them, activities to impress board rooms full of college admissions officers looking for "well-rounded" students who were active in their communities, but in activities that could be happily considered uncontroversial and non-rebellious. Very few of them really were passionate about the activities they were connected to, and very few of them had little more than a cursory knowledge of the charities they were working for. Just ask any high school student I blasted for supporting Autism Speaks, hahaha.

And I wanted none of that. I saw it as the ultimate hypocrisy. Miming an interest in the welfares of others for the sole purpose of forwarding your own ambitions. These able-bodied, neurotypical, mainly white, cisgendered, straight students were cashing in on the system of handing bread crumbs to the poor and the disabled so that they could one day cozy up into sky-high offices and never bother to look back down again. I was adamant that I would do my own activism on my own terms, and none of it would be user-friendly to rooms full of old white academics who were out of touch with the true struggles of those who were on the force-fed end of this system of photo ops and references on applications.

Now I am in college, and my attitude is considerably less harsh towards charitable work done by high school students. I know that many organizations are forced out of scrimping and pinching in order to survive and continue their operations, and I am glad that they have them to count on, even if their motives are less than 100% altruistic.

But my personal feelings towards my own credentials in that field remains the same. I am not your typical "March for Autism" charity walker. Autism is my life. I cannot put on a blue t-shirt, do a song and dance for some cameras, and then jot it down on an application and forget all about it. I wake up autistic, I go through my day autistic, and every night I go to bed as an autistic. My passion for seeing my own people be treated with respect and my crusade to end dog-and-pony shows that treat autism as something to be pitied will not gain me entrance to universities or private clubs.

My outspoken resistance to the efforts to bottle us up and use as as props to show off their giving spirit has been met with misunderstanding, open hostility, and outright accusations of being a self-hating autistic who doesn't know what's good for me. My truth makes people who do faux-charity gigs uncomfortable, because it forces them to question their own goodness in their empty gestures when they hand over their latte money to Autism Speaks after shopping at Toys R Us, unaware or perhaps not caring that it will go either towards posh New York suite offices or developing a method of wiping autism off the planet. It's about giving themselves a reassuring pat on the back and looking good to each other.

But I do not require the approval of admissions officers, an ink-soaked resume, or a spot at Harvard as a token Autie destined to change the world of calculus or chemistry to reassure myself that my activism means something. I can look inside my own mind and see that what I am doing is helping myself come to terms with a world that reviles me and my voice, my very existence.

Film Review: Mary & Max

This film was recommended to me by an ex boyfriend who was aware of my Asperger Syndrome/Autism. I went into the task of watching it with some apprehension, namely because a lot of depictions of autism in the media are downright embarrassing in their ignorance and prejudice against the idea of neurodiversity. But I trusted my ex's opinion, and watched Mary & Max tonight.

I think we have a new winner for the most sensitive portrayal of autism in film. Ever.

Mary & Max is only partially about Asperger Syndrome, which the character of Max has. It is more about the unique friendship struck up between himself and Mary, a lonely girl from Australia who writes to him on a whim after picking his address out of a New York phone book. The two form a bond that may seem unorthodox to neurotypicals, but to me, it made perfect sense. For people with AS, the task of friendships, particularly friendships with people in your own age group, can be daunting. It seemed natural to me that Max would more readily accept a friendship with someone who was younger than him, since children tend to be more forgiving of autism's special package of quirks.

Max, voiced by Philip Seymour Hoffman (Whom I think is neurotypical, correct me if I'm wrong) is matter of fact, well-rehearsed in many facts, and has difficulty with certain situations that can lead to a need for anti-anxiety medication... Just like me. The only time he's mentioned as having savant-like abilities is when he notes casually that he taught himself to read with both eyes, left page for left eye, right page for right eye. This is actually an attribute he shares with Kim Peek, one of the most frequently non-autistic people to be labelled as autistic. But the fact that Max's mind, while having many autistic qualities and having several special talents and an affinity with numbers, was depicted as not being in the super-genius range, was a welcome relief for me. Finally, someone I could relate to, whose intelligence didn't pose an intimidating challenge or make people with autism ask "Why can't I do that?"

What was most interesting to me was Max's attitude towards his Asperger Syndrome. He did not display any self-pity, loathing, or wishes for neurotypical life. He was proud to be autistic, and can even be seen in one part of the film posing in an "Aspies for Freedom" shirt! When Mary makes a faux pas that a lot of aspies would recognize as common curebie tendencies, Max acts as I would act in the same situation. He remarks that changing his Asperger Syndrome would be like trying to change his eye colour.

The film takes place over two decades, and it is, as I said before, a very accurate, touching portrait of what real life with autism is like. There's no pity for Max, only a love expressed for him and his bond with Mary. I wholeheartedly recommend it. I hope that even though it's no Oscar-grabbing prize winner, it plants the seeds of neurodiverse thought and autism acceptance in film festival goer's brains, and gets them to think twice before slapping a "Let's cure you!" attitude on.

Dr. Barrett of Quackwatch faces legal thuggery from Doctor's Data

http://scienceblogs.com/insolence/2010/06/more_legal_thuggery.php

I don't have much more to add to this story. But I would like to say that the silencing and bullying tactics that are being used against Barrett are the same ones that people with autism face when confronting lies about the origins of autism and the snipe chase of a cure.

I have been criticized before for letting my identity as a skeptic get in the way of my autism blogging, but I say that being both a skeptic and autistic, the issues that the two deal with are equal in importance to me, and I feel that it is important that people with autism collaborate with members of the skeptic community to create the best income for people with autism. Truth is the root of the skeptical movement, and what's good for truth is good for autism.

Donate to Barrett's legal defense here through his website, Quackwatch: http://www.quackwatch.org/00AboutQuackwatch/donations.html

And while you're there, check out the website. It's an invaluable tool for science based medicine and making reasonable, educated decisions.