Wednesday, August 24, 2016

Colorblindness: Its Ineffectiveness and Its Impact

Around this time last month, a Black therapist by the name of Charles Kinsey was shot in an attempt to defend his twenty-three-year-old autistic Latino client, Arnaldo Rios Soto, from being harmed by a Miami police officer.  A "concerned" local had reported Rios Soto to the police department out of a belief that his toy truck was a handgun.  This event had left Rios Soto traumatized. 

Some of the comments in the above link are quite perturbing to me, from presuming that a twenty-three-year-old disabled man was inherently at the cognitive level of a small child, that society should return to the days where autistic people and others with developmental and psychiatric disabilities should be warehoused in institutions "for their own good," and that all autistic people are born in pain.  All of those comments are subject to excellent criticism, and have been so previously, by so many individuals.  My own criticisms of such beliefs will arise when I can find the words to do so.

However, this post is not about such criticisms.  This post is about how colorblindness is ineffective, how we can pretend all that we might that race is not a determinant in the outcome of one's life, and that race and autism are not inexorably linked.  

Not only is the shooting of Charles Kinsey another shining example of the fact that more nonviolent Black people are shot by police in America, but that the race and ethnicity of Arnaldo Rios Soto is effectively being ignored.  It is the lack of response to the needs of specific racial and ethnic demographics by autism and by broader cross-disability organizations that have prompted for disabled people of color to create the #DisabilitySoWhite hashtag, and for Black disabled people to prompt the hashtags #BlackAutisticLivesMatter and #BlackDisabledLivesMatter.  

Being a white woman, I do not feel that I am in a position to comment on how various communities of color view disability, autism in particular.  Alas, coming from a position of privilege, I am cognizant of the fact that socioeconomic and language barriers persist in preventing people of color from accessing the care and treatments that they need, and that a lack of cultural competency persists in disciplines such as psychiatry and psychology-- in the medical field in general.  I am also aware of the fact that the typical poster child for autism fundraising campaigns is almost always a young white boy, and on rarer occasions, a young white girl or a grown white man-- something that I believe has contributed to cases where which an autistic child of color is disciplined out of an inherent racial bias.  Even historically, have autistics of color been unrecognized and heretofore erased, a travesty that has had consequences today.

 The fact of the matter is, disability rights organizations and autism-specific organizations in particular can no longer afford to be single-issue.  It is immensely inappropriate to remain single-issue, if it is not apparent in the consequences of remaining so.  This piece drives home my point.

Race is irrefutably a creation of the human mind, not a construct rooted in biology.  Just about everyone, it seems, can accept the latter statement, and yet the former statement is avoided as a conversation out of fear, fear that we will open doors that we believed that we have closed, fear that we will tread into territory that should not be trod.  The truth of the matter is, ignoring these conversations can inflict dire suffering on the people surrounding us.  The truth of the matter is, those doors were never closed to begin with; that territory is one that affects and permeates all people in some manner, directly or indirectly.  

When you want to open your mouth about how "All Lives Matter," just remember that the tale of Arnaldo Rios Soto floated about in the mainstream media for perhaps a week or less, his traumatic story reduced to a soundbite with some video footage for purpose of commentary.  Remember that the mainstream media ignored a stabbing attack at a care home for the disabled in Sagamihara, Japan, because a nation not in immediate Western interest should not receive empathy.  Remember that right now, protests led by hundreds of indigenous peoples of North America are going on to prevent the building of the Dakota Access Pipeline, an act that would ravage what to them is their heritage and their connection to their past.

Dare to tell those who have died and continue to die at the hands of racism that "All Lives Matter," because while it is certainly obvious that they do, it is apparent that many people's lives are being ignored by the powers that be.

Tuesday, August 23, 2016

Puzzling? No, Not Quite.

One of the oldest symbols used as a means to represent autism in the public consciousness is that of the puzzle piece, specifically, red, yellow, blue, and green puzzle pieces combined.  In the latter instance, these pieces typically connect themselves on a ribbon-- a symbol that, from my understanding, is commonly associated with the Autism Society of America (ASA) and smaller organizations that have taken the call from it.  This symbol was created by coalitions of parents that perceived for autism to be a "perplexing" condition, due to the lack of knowledge of as to how precisely their children were autistic, and why.

In more recent times, some autistic people and our allies have spoken out against the puzzle piece symbol, and I would concur with this expressed sentiment: that we are not puzzles, but human beings.  That the puzzle piece is a symbol that focuses too much on how and why we are autistic, instead of shifting that focus onto us as unique human beings who have advantages and disadvantages, wants and needs, as any other.  Add on to the fact that the Big Blue Puzzle Piece represents a nefarious organization that has received the criticisms of many of us whom support thoroughly the neurodiversity paradigm, and I can nod my head in agreement of how the puzzle piece symbol can cause controversy.

 Admittedly, earlier this year, I have used imagery of both the rainbow puzzle pieces and the rainbow infinity symbol in a poem and in two different pieces of artwork on two differing outlets of media.  It was not until after that occurred that I further investigated this particular debate.  The artwork cannot be undone, but I may rewrite the poem at some point in the future if it ever were to be published.  New learning happens constantly.

I would much prefer to see the rainbow infinity symbol used in place of the puzzle pieces, most-certainly; in fact, I plan on soon contacting local autism organizations and discussing this subject with them.  I see the genuine criticisms of the puzzle piece imagery that many have, be said criticisms for or against the use of the particular form of symbolism.  If you would like to read a diverse plethora of opinions pertaining to this, follow this link at the Art of Autism.

My take?  I would like to see these puzzle pieces faded out and replaced by the rainbow infinity symbol, or perhaps by one of the other symbols that are featured in the aforementioned article.  We are, indeed, people, not puzzles to be put together.  I would agree with the sentiments expressed that the puzzle pieces have been essentially claimed by advocates for an autism "cure," people who do not follow the social model of disability or respect our humanity and our civil liberties. 

There are still four years remaining of what has been dubbed as "International Autism Acceptance Decade" (it has a span of 2010-2020).  In these four remaining years, the puzzle pieces, I am hoping, will say farewell.

Thursday, August 18, 2016

Genetics, Homosexuality, and Autism

"Being queer/transgender is a choice."

"Being autistic is as a result of vaccinations, genetically-modified organisms, lack of [insert vitamin or other vital nutrient here] during pregnancy, or simply not enough discipline."

It is common now that I find that it to be routinely accepted that being queer has powerful neurogenetic ties.  One of the earliest pieces of literature to promote this notion that I have found is from an article initially published in The Atlantic magazine in March of 1993 (which was published digitally in June of 1997).  Given America's coming to terms with the AIDS epidemic of the 1980's and the stigma that was heavily and undoubtedly faced by gay and bisexual men at the time, such a publication was, through my lens, something that likely penetrated through that web of fretful lies about queer men and about "the homosexual lifestyle," and not solely the fact that many heterosexual couples also fell victim to the devastating disease that AIDS can prove itself to be if left untreated.  This particular article also discusses many of the hormonal influences that can determine an individual's sexual orientation, which, again, is quite something in consideration of the time period in which it was initially published.

This fairly-recent November 2014 article cites a publication from Cambridge University that notes a mutation found in gay men on chromosome site Xq28.  Said chromosome has been found to be linked to Rett's syndrome, which in the DSM-4 as well as the DSM-4-TR as a pervasive developmental disorder that possesses characteristics of autism as well as a host of other physical disabilities in the likes of Parkinson's disease.  Yet, here's the catch: Rett's is not autism itself, and it occurs almost exclusively in females (most males with Rett's syndrome, reportedly, have died before the age of two years, with some notable exceptions).  Is it purely coincidental that the same site on the X chromosome has been linked to male homosexuality as well as to a developmental disability with some autistic traits, yet is genetically and physically distinct from autism?  I would contend that is so, yet at the same time, it is something that stirs my curiosity.  I cannot propose any hypotheses as a result of not being a geneticist, so my curiosity, in this case, is moot.

An overwhelming amount of the research out there that deals with homosexuality places an emphasis on gay men as test subjects, such as the one aforementioned and this more recent article published in Science magazine in October of 2015 .  I find it to be of excruciating difficulty to find anything other than this June 2012 Huffington Post article that cited a 2011 study conducted in the UK that found at least a twenty-five-percent inheritance rate between sets of identical and fraternal lesbian twins.  This study, while one that certainly contributes to the study of genetics as a determinant of sexual orientation, is merely not enough.

The genetics of autism are complex, perhaps just as complex as the genes that determine one's sexual orientation. This 2008 research paper documents how the C4B gene null allele is commonly found to be either missing or mutated in autistic individuals; however, said missing or mutated gene was also found in a comparable population of neurotypical test subjects.  Earlier this year-- February, to be exact-- this gene was believed by researchers to be the gene that will "open the black box" into studying schizophrenia, the psychiatric disability that at one point, its childhood form was believed to be autism (there was in fact an "epidemic" of childhood schizophrenia, much as there is now an "epidemic" of autism).  As it turns out, in 2009, as this paper unveils, a genetic overlap was discovered between autism, schizophrenia, and bipolar disorder.

However, as the phrase goes, "when you meet one autistic person, you meet one autistic person."  This is true even at a molecular biological level.  In 2007, a paper was published based upon a study of children with diagnoses all over the autism spectrum and of varying degrees of ability and care requirements.  This paper discovered that many of these children possessed a mutation on the SHANK3 protein, as well as a deletion of the 22q13 gene.  Autism is fairly-common in those with Phelan-McDermid syndrome, a rare genetic disorder marked by the absence of the 22q13 gene. 

Many people on the autism spectrum have proven time-and-time again to possess a number of de novo copy number variations, as this article published on Medscape, which cites a September 2015 study, demonstrates. According to said study, sixty-five candidate genes for autism have been identified, twenty-eight of those genes contribute, quoting the article, a "high risk" for the development of autism.  There have been numerous studies in the past that have brought to light the contribution of de novo copy number variations in the development of autism, yet this is perhaps the most-recent of such studies.  

Both sexual orientation and autism not only have strong genetic origins, but also those epigenetic in nature.  This December 2012 article cites a research paper published in The Quarterly Review of Biology of which states that "sexually-antagonistic" epimarkers can be passed on to opposite-sex offspring  and render them as being "sexually-disadvantaged."  In essence, this study makes the claim that sexual orientation is primarily if not exclusively epigenetic, and that homosexuality "runs in families, but is not genetic."  I would contend that evidence exists to digress against such a statement, but it is still an effort to foray into the study of epigenetics and their contributing factors to sexual orientation.

In regards to autism, this 2013 paper cites various epigenetic factors that could plausibly contribute to the expression of autism phenotypes.  In its conclusion, it admits that the study of epigenetic factors in regards to autism is "in its infancy--" signaling that much work is to be done in regards to the study of epigenetic factors contributing to autism.

I am adamantly in support of genetic research in regards to sexual orientation solely to, once and for all, silence those whom claim that us members of the LGBT community are queer and/or transgender by virtue of selection.  I feel that many would contend such an undertaking is reasonable (especially since being queer is not immune to the linking of vaccines to things deemed as "unnatural").

However, my support for genetic research in regards to autism is far-more cautious.  On one hand, researching how certain genes interact with one another can possibly alleviate some co-morbid conditions that can arrive with autism that many who have such conditions are not beneficial, such as epilepsy or gastrointestinal issues.  It is also a great manner in which to silence those who oppose vaccination because they fear having a child much like myself or one of my cousins.  At the same time, I do not wish for autism-related genetic researchers to fall into the unscrupulous hands whose sole motive is to eradicate autism from the gene pool.  My position on finding a "cure" for autism is quite clear, as it is of so many in support of the neurodiversity paradigm: it would be highly-unethical for a myriad of reasons, notwithstanding the fact that disability is an organic aspect of human reality.  For certain, do I know that I do not wish to live in an overly-sanitized humankind where which diversity of any sort, inclusive of disability, is nonexistent.

Acceptance of both queerness and of autism as simply just being should be the end-goal of our society.  Genetic research may answer the thousands of questions that we ask pertaining to how such things as queerness and as autism come about in the human species; but, what ethical costs, particularly in regards to autism, might we be paying as a result?  It was only scant over forty years ago that it was made cognizant that homosexuality was merely a variant of human expression.  How much longer shall it be until autism is regarded in the same light: as a variant in the expression of human neurology?

Tuesday, August 9, 2016

Andrew Wakefield and the "Vaxxed" Team: No, We Are Not "Vaccine-Damaged" nor "Broken"

Frankly, I cannot believe that over eighteen years since the publication of Wakefield's fraudulent paper, and more than six years after its retraction and the stripping of his medical license, not only does he still crusade in promoting his nonexistent gastrointestinal disease by the name of "autistic enterocolitis," but that uninformed parents of newly-diagnosed children still fall prey to his preaching as a result of fear and of uncertainty.

 I find it incredible that even after statements in the likes of this, this, and the threatened legal action against autistic rights activist Fiona O'Leary that there is not more outrage from the broader community that is in opposition to the long-debunked autism-MMR vaccine link.  Alas, I then remember that the anti-vaccine movement has gained a considerable amount of momentum since Wakefield's infamous publication, that precise publication having given birth to a demon of a movement that has lead many to be convinced that the lives of people such as myself, as my cousins, and as my acquaintances are a death sentence and a drain on public resources.  This same movement has also cost people, many of them children under the age of five, their very lives, after 114,900 people died of measles in 2014. 

Andrew Wakefield, Polly Tommy, and Del Bigtree-- the Unholy Trinity of the propaganda film "Vaxxed: From Cover-up to Catastrophe--" has convinced so many people that having a child much like myself is the worst potential thing that could plausibly happen to them, that having an autistic child is the shattering of their hopes and their dreams.  These are the individuals whom find out, usually much too late, that there is indeed hope, that their autistic child did not receive his or her autism from vaccines, and that it is instead a developmental disability and a neurological difference with an extremely-high rate of being inherited.

Am I denying the challenges of raising an autistic child?  No, I am most-definitely am not.  I have witnessed, first-hand, just how exhausting and how difficult it can in fact be.  But, when, as a result of the anti-vaccine movement, people feel compelled to murder their autistic children, there is a major issue that should have a direct solution, but unfortunately, one does not exist.  When the media sympathizes with those who murder their autistic children, no matter their care needs or stage of life, then there is only fuel added to the fire. 

What I find to be profoundly comical is that the anti-vaccine parents whose children are not autistic shout proclamations as if they are morally and ethically on a sort of a higher ground.  What I find to be even more hilarious-- in a devastating manner, of course-- is that the anti-vaccine parents whose children are autistic who say that they are doing all in their power to "cure" their child of their autism, and twisting it into a somehow revolutionary act.

Would you like to know what is truly revolutionary in nature?  Loving and accepting your autistic child as they are, no matter their individual care needs and communication skills.  In a World that will attempt to convince you that your autistic child is inherently "broken" or "diseased," to love them as they are and to advocate against a cure and instead funnel energy and money into more adult resources and alternative communication developments is far more revolutionary than it shall ever be to make your child's life as close to "normal" as possible.

Andrew Wakefield and the "Vaxxed" team: I am not "vaccine-damaged" nor "broken."  My cousins are not "vaccine-damaged" nor "broken."  My acquaintances are not "vaccine-damaged" nor "broken."  I find you and your lot to be scant more than pusillanimous circus clowns, and I say this because it is quite cowardly to convince an entire generation of parents that having a child like me is worse than having one who is dead.  You and your foolishness must be stopped before it can spread any further, and seep into the minds of the next generation of those who will be parents.

 Andrew Wakefield and the "Vaxxed" team, please, rid of yourselves from the scene and find a manner to make money that does not exploit the anxieties and the money of parents who do not know where to turn because their son or their daughter has been identified as being on the autism spectrum.  Your reign of terror is quite insidious and damaging beyond words that I can articulate with the eloquence that I would feel is evident in much of my writing.

Tuesday, August 2, 2016

On The Death of Suzanne Wright, Co-founder of Autism Speaks

Like so many in the autistic community, I do not condone Autism Speaks; I do not, whatsoever, support them, financially or otherwise, and I no longer share posts pertaining to their "Light It Up Blue" campaign on any social media outlets.  This-past April, I had made quite a few posts on my personal Facebook page, advising kinfolk, friends, and acquaintances alike not to "Light It Up Blue," and go "Red Instead," albeit to not much success.  As my years go by, I will do all in my power to divert people's donations to organizations that have made strides towards autism acceptance and towards including us in the broader community without using language or campaigning tactics that stoke fear, pity, and shame in the hearts of an unfortunate many.

It took me a while, admittedly, to reach this level of comprehension of what harm that Autism Speaks has done for us in the eleven years since its conception.  I watched the 2006 documentary/propaganda film produced by them, Autism Every Day, and my heart did not cease shattering for those innocent autistic children who were, through my lens, exploited for the sheer purpose of garnering pitiful sentiment for their parents, the most intimate details of their daily lives broadcast for the World over to see and absorb as what "autism" is.  It got me to wonder, very much so, where said children are now, and what messages that they had internalized as a result of the constant, negative rhetoric about autism and about being autistic that were spoken aloud by their own parents whilst they were in their presence.

I watched their infamous promotional video from 2009 entitled "I Am Autism," the very video that had demonized and dehumanized autistic people such as myself, my cousins, and some acquaintances of mine.  I wonder where the autistic children and adolescents of that video are now, as well, given that it was nearly a decade since that god-awful production initially aired, only to be removed soon after as a result of pressure from actual autistic people and our allies.

I had read Suzanne Wright's 2013 "Call to Action" proposal that she had delivered in Washington, D.C, as well as her 2014 speech presented at the Vatican.  Both of these speeches contained words that, again, degraded autistic people, reduced their existence to mere caricatures of those in pain with a most-terrible affliction and with little to no emotions or desires, and overall, stirred controversy within the autistic community, as well as among those who unfailingly express their support for us (and often, it is because at least one of their children is one of us-- for supporting their child as they are, I cannot commend them enough).

Much of what Suzanne and her husband, Bob, had said about autism and about autistic people was done so out of their belief that they were doing it in the better interests of their grandson, Christian.  Though I am not a parent, a grandparent, or a caretaker of any sort, I understand quite well that their intent was to alleviate the suffering of those who may have other conditions besides autism that can make life extremely challenging, such as epilepsy, as GI issues, as sensory dysfunction, and the like. 

However, throughout the years, Autism Speaks has conveyed that all of these things are inexorably linked to autism-- when, in fact, they are not.  Scores of autistic people, parents of autistic children, and some professionals have denounced Autism Speaks for its inaccurate, stereotypical, and fear and pity-mongering autism "awareness" initiatives, seeing them for what they truly were: ludicrous.  Autism Speaks, for years, has sought a cure for autism that, realistically, cannot, and will not, happen, not at least without decades of research, billions, possibly trillions of dollars in funding, and not without extensive debates on the bioethics of curing autism, which Autism Speaks has, in the past, characterized not as the lifelong disability that it is, but instead as a debilitating disease akin to HIV/AIDS or cancer.  I am, if it is not within the realm of being obvious, strongly against a cure for autism and an ardent supporter of the neurodiversity paradigm that Autism Speaks and its proponents have time-and-time again denounced as seeing only the "sunshine, rainbows, and unicorns" of autism.

As the news broke of the death of Suzanne Wright as a result of her years' long battle with pancreatic cancer, it seems as if the mainstream media outlets that have picked up on said story have portrayed Mrs.Wright as a martyr of some sort, with supporters of her well-known organization expressing sympathy with her family for her loss.  To die of cancer is devastating, this I cannot and will not deny.  Her kin and her friends have all the right in the World to mourn their loss of her.

Yet, as these stories broke out, on the Facebook page of one media outlet in especial, an autistic adult has stated that Autism Speaks should not be considered as the authoritative voice of autism, and exposed much of what Mrs.Wright has said in the past-- to much support, and to much scorn all the same.  Another comment linked to this August 2014 article written by Amy Sequenzia over on the website of the Autism Women's Network, and a reply to said comment was on the "ridiculousness" of the article written by Sequenzia nearly two years ago.  In essence, many of the reactions to comments such as these were defensive, as so they typically are.

I hold a belief that if Autism Speaks did not have the prominence that it did, it not only would have not molded so much of the public discourse on autism as it has, but that Wright's death would not have made the headlines that it did.  As of recent, another advocate for autism, a woman by the name of Sandy Kinnamon who had worked at the grassroots level, rather than with an organization as large as Autism Speaks, had died.  The forty-five-year-old mother of three was found deceased in an SUV, the cause of her death, at present, unknown (this is one local media outlet's article in the wake of the tragedy). 

Though I am not informed on as to what type of work that Kinnamon had done, from my own reading of the tales of others, she advocated on behalf of her six-year-old autistic daughter and on behalf of all autistic children, adolescents, and adults without using the same negative language that Suzanne Wright had deployed in much of her campaigning, effectively demonizing people much like her own grandson.  Why I say this is not in an attempt to make a contest on as to whose life was supposedly "of greater worth:" rather, I am saddened that because Kinnamon did not have the immense wealth or social status as did Wright,  her death went largely unrecognized outside of disability activist circles and local media outlets. 

I reiterate: to die of cancer is a tragedy, no matter who it is, let alone of the pancreas, one of the most aggressive cancers that exists out there.  Unlike autism, cancer is devastating and needs a cure as humanly as potential.  I have actively witnessed what cancer does to people, and I know well what the Wright family is enduring.

But at once, we cannot allow for an organization such as Autism Speaks to continue to monopolize the conversations on autism, continue to paint autism and autistic people as tragedy cases.  We cannot forget the history of this organization, which has silenced actual people on the autism spectrum and those who are more than willing of what we have to say, has created unnecessary division on the basis of arbitrary "functioning" labels and the need for supports to lead a life as fulfilling and as independent as possible, and has spewed rhetoric about autism so negative that it had actually compelled some parents to murder their autistic children.  We also cannot permit for the deaths of less-recognized advocates to go under the bus and to be unacknowledged, solely because they are not nearly as well-known as are individuals in the likes of Suzanne Wright.

Suzanne, there is a whole community of children, adolescents, and adults just like Christian who would be more than willing to invite him into their lives and provide insight on what it is like to live with an autistic consciousness.  I wish that you had known this more than a decade ago, for if you did, I do not believe that America and beyond would view autism and would view people such as Christian, myself, and many other people who are on the autism spectrum either as nuisances or as objects of pity or of condemnation.  I wish that you had known this more than a decade ago, for if you did, the conversations that we now would be having about autism would look dramatically different than they currently do.

Suzanne, I wish that you had known that Christian and others like him were always, always listening, and that words, like thorns, do indeed hurt.  Even if he could not verbalize his thoughts unto you, still, was he ever listening.  I say this, because I know well that autistic people all over the spectrum have heard and have read your words. and have been affected by them in some manner.  I also know that your words, as I have previously stated, have influenced the public discourse on autism and on autistic people-- and, as many self-advocates would say, these conversations are not for the betterment of Christian's or any other autistic individual's life.

Let us mourn what you did not learn, and hope that many can learn from the major mistakes that you have made while claiming to advocate on behalf of your grandson and on many other autistic people.  Let us mourn the fact that you and your husband had the potential to establish Autism Speaks as an advocacy organization that did not utilize scare tactics, included voices of actual people with the disability, and overall, did not place the stigma surrounding autism in a new package by citing fraudulent statistics that claim how autism allegedly "instigates divorce," yet instead created a behemoth of an organization that, no matter how hard it may try, still fails to completely win the trust of the community that which it purports to be the voice of.

Let us also mourn the death of Sandy Kinnamon, and the substantial loss of her advocacy work in the autism and the broader disability communities, and also ask ourselves why we are not talking about her death.  Let us mourn the fact that somehow, her life and her advocacy work were "worthless" because her social and socioeconomic status paled in comparison to that of Suzanne Wright.

"Autistic Person," "Aspie," or "Person With Asperger's Syndrome?"

No matter how minuscule the issue of "person-first" as opposed to "identity-first" language may seem to an outsider in the autistic or the wider disability community, the issue is one that many, many autistic people, parents of autistic children, and professionals from all disciplines whom work with autistic children, adolescents, and adults all seem to express a myriad of views on.  As a result of me being new to the blogosphere, I am going to state what I have used previously, what I continue to use, and overall, my take on the matter as an introductory post.

At one point in time, did I solely identify as an "Aspie" or a "person with Asperger's syndrome."  When I was younger, admittedly, I knew little about Asperger's syndrome, other than the fact that many others deemed it as a "mild" form of autism.  Truth be told, the autism spectrum is not as linear as some believe for it to be: you do not have Asperger's syndrome at the "highest" end of the linear sale, with "low-functioning" autism at the other end, and PDD-NOS and "high-functioning" autism somewhere in the middle (I have my qualms with functioning labels that I will detail in another post).  Rather, it is a circle with different points plotted on it in relation to an individual autistic person's skill set.  If you would like a visualization, I would suggest following this link at the Art of Autism, which does a much more efficient job at explaining this than I am doing right now.

But, now that I am older, I know much better than I did as a newly-diagnosed nine-year-old child.  Not only did I begin to question my own identity in regards to being autistic in the World, but I also learned that "Asperger's syndrome" as a label does not automatically render me as better than other autistic people without said diagnosis, nor better than any neurotypicals on the sole basis of my neurology.  It is as a result of this self-exploration and discovery that I have began to use the label "autistic," which, admittedly, I at first tried to distance myself away from the fact that I was so.  For quite a many years, have I endured bouts of self-loathing for my autistic essence as a result of absorbing negative discourse from the people and from the media surrounding me.  It is only when I had begun to read more blog posts and other tales by autistic self-advocates, some much like myself, and others, whom society would wrongly dismiss as being "intellectually-incompetent," that I had truly began to realize that I am certainly not alone in breathing an autistic consciousness, that there is indeed hope for people such as my cousins and myself, and that the negative rhetoric coming from so many sides all around me was merely inappropriate and untrue. 

The label "Aspie" is one that I have used since I was a child.  I find it concise and adorable, a label that I am glad the community of autistics with a specific diagnosis of Asperger's has chosen as one of their identifying labelsFor many with the specific diagnosis of Asperger's syndrome, "Aspie" carries a great deal of cultural significance, this I know from my own personal experience with those who proudly bear its badge even in the face of scrutiny. 

However, in regards to the term "Aspie," I recognize that there can be an inherent negativity that comes along with it.  The term "Aspie" can be used by some as a means of separating themselves from "those" autistic people, the autistic people whom require assistance in day-to-day activity and who have a limited or nonexistent verbal repertoire, and instead must communicate via a form of AAC.  The "Aspie" label has caused and at times, still does cause, unnecessary division within the autistic community-- and, that is largely why I use the term less-and-less, no matter how definitive of my reality it may be.  

I prefer identity-first over person-first language for a myriad of reasons, the number-one reason being that of an echoed sentiment in the autistic community: the fact that my flesh and my soul are inseparable from my neurological wiring.  I do not seek to be "cured" of my autism, and frankly,  a great deal of fellow autistic people do not want to be, either.  Whether they can speak or must use AAC, can or cannot live independently, have or do not have cognitive delay, many autistic people of all walks of life have expressed an intense desire not to be cured of their immutable essence that is their neurology.   This, I have learned over the past few months alone, dismantling all of the internalized preconceived notions that society has ingrained into my mind for perhaps the longest time.


For myself, I see little purpose in using the term "person with Asperger's syndrome" outside of a clinical context, for the sole reason that "Asperger's syndrome" and not "Autistic disorder" is what appears in medical records.  Would I yearn for professionals to recognize the identifying label of "autistic," no matter what an autistic individual is capable of, and what they may need more assistance with?  Yes, I would.  I would love for medical and other professionals, such as those involved in education, to cease their insistence upon "person-first" language and only deploy said language if so the individual requests; however, there must first be a shift in the general public's incarnation of autism in its consciousness, as well as a shift in paradigm from "awareness" to "acceptance," before it comes to fruition-- unfortunately.  Much as how I am a queer* person and not a "person with queerness" or a woman and not a "person with womanhood," I am an autistic person, not merely a "person with autism or Asperger's syndrome."

I hope that identity-first becomes more commonplace, especially with regards to the fact that it is becoming ever-increasingly easier to identify individuals of all ages as being on the spectrum.  The word "person" need not arrive before the word "autism" in order to make it cognizant within an individual that autistic people are competent, complete human beings.

*I choose to use the terms "queer" and "lesbian" interchangeably, the former mainly due to the sociohistorical context of it and how it can in fact be made positive by a member of the LGBT community in the context of today.  I use the latter because of the simple, irrefutable fact that I am a woman who is attracted in every manner potential to other women.  This could, potentially, be worthy of a blog post all on its own at some point in time when which I may find it appropriate.  Yet, for the time being, I am only going to summarize my thoughts behind as to why I choose such identifying labels in regards to my sexual orientation.