Saturday, August 28, 2010

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.

Thursday, August 12, 2010

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.

Wednesday, August 4, 2010

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.