Jan. 28. 2014
This is a letter to the Anti-Label people. I felt compelled to
write this, because I have been met with criticism amongst some people for in which
I share like-minded beliefs, regarding health, the environment and global
reform. I really need to explain why I feel hurt and frustrated, when I try to
identify as autistic, and am shut down with the assumption that I am "labeling
myself" with some sort of illness, and "playing the game" of
what is bad about society.
I do not need to be told that over labeling is a very negative
thing; I know this full well. However, I am not "labeling" myself; I
am merely self-identifying with the basic typology in which I feel best
represents my brain wiring.
There is proof in facts, presentational consistencies, and
neurological studies. There is science behind the general
typology of autistic brain wiring. Again, I am not overly fond of labels
either, but the majority of society is, and this particular
"label" serves as a way to potentially protect me from further misunderstanding,
and therefore, further discrimination.
This is what I mean when it comes to receiving a
"diagnosis" of autism as a result of an evaluation and identification
of clinical traits. I myself met these traits, after a careful and thorough
examination, which included my live childhood video footage. In this sense, I
have technically been "labeled."
I explained why I sought this for myself, above. I can further
elaborate by saying that I was being discriminated against, unfairly misjudged,
and erroneously mislabeled with other “disorders” as opposed to objectively
determining the proper “why.”
I was having persistent difficulty in various areas of my life,
for in which I needed support and advocacy, such as medical and vocational. I
also needed more insight into understanding my learning differences, and how I
could have them work for me, not against me. My diagnosis has brought me
support and accommodation, when it comes to occupational and educational endeavors,
which is great.
I plan to utilize more of it this year, with regards to my
writing and my art. Lastly, I do continue to be discriminated
against at times. My diagnosis isn't' necessarily a cure for this, though it
helps. I have to accept and rise above the fact that some discrimination may
always be inevitable, just as I would have to do if I were gay or transsexual.
Many people have a hard time obtaining the official diagnosis
of autism.
This is due to red tape in the current diagnostic criteria for
autism. Despite this, many people choose to self identify, as the description
of autistic traits is what most closely resonates the way in which they're
wired, and therefore; it feels "right" to their being. Self-identification,
and finding community, helps people like us. It helps many feel like they
"belong"... regardless of official diagnosis. Most people would
prefer an official diagnosis, though have had no choice but to accept that they
may not be able to obtain one.
I was lucky in this way. I also had some evidence, which was
reported to be "subtle but there", of clinical presentation. This was
my childhood footage; it could not be denied. I think eventually, this
entire situation will evolve in whatever way is most needed. I feel that
eventually we can become a community, and help each other at a mass movement
level.
This could possibly replace the need for those who may not meet clinical
criteria, to receive supports. But we're not there yet. So, I'll stop there.
The point is, self-identifying as Autistic doesn't need to be so
negated, it can be supported and accepted...when the nature of it is better
understood. Many people who identify as autistic have been badly misunderstood
and mistreated as a result of their neuro differences, throughout their lives.
This can slow down with finding community, and with something to
"name and explain" these differences, the true nature of our
motivations for presenting behavior, and how these motivations are coming from
different places then they may seem.
The more support we get from the public, the less we'll have to
rely on official diagnosis to truly "declare" this difference. The
more we are supported when we "come out of the closet" and self
identify, just as Gays do, the less we'll be up against a backlash of
criticism, skepticism and cynicism. Ultimately, the more we're supported in
this way, the more we can heal and find joy naturally.... without having
to enact such staunch and tireless efforts.
Being mistreated is incredibly traumatizing to us, and many of
us develop Post Traumatic Stress Disorder as a result of this. The last thing
we need, when we try to "come out of the closet", is a negative
backlash. This is again, similar to the situation of someone coming out as
being gay...it's hard enough, and the backlash just adds insult to injury. We
can't help being autistic, any more than one can help being gay. Nor is any of it
actually a bad thing. It's not just about the challenge and the
affliction.
There are so many gifts and advantages associated with having an
autistic brain. It's enough to write an entire blog, or many of them. The
negativity stemmed from living a lifetime of differing to the norm, trying to
"fit in", and the inadvertent abuses we suffered because of it. For
many of us, there are lasting affects to these things, such as acquired
compromises to our health, mental and more especially, physical. The internal
PTSD many of us have suffered can even play a large role in triggering immune
disorders, such as Fibromyalgia.
When we come forth, and come out of the closet; we have many
reasons. The ultimate reasons are for healing and happiness. Putting a
"name" to and identifying our neuro difference, serves as a catalyst
for this...and it means so much to us.
It is a crucial process. It can eventually bring recovery and
inner peace, as we become more in touch with our real individualistic
self... one in which had often been judged, shamed and hurt.
So, the last thing we need, whence in a delicate state of self-realization,
is a negative backlash. We deeply need more individuals to be empathic,
understanding and supportive to this process. This is why we are working so
hard to try and shift the way people think about what being autistic is. It's
no different to how hard the gay community worked, in order to try and soften
the backlash of their members "coming out of the closet, by raising
awareness.
Of course, there will always be some degree of negativity, opposition,
and discrimination; just as the Gay community continues to see. However, we can
still try and lessen the degree in which it is still happening today. I believe
we're in the beginnings of it; but there's far more potential for growth in
this way. In lieu of this, please consider all of what I have described to you,
and please refrain from criticizing us as trying to "label ourselves"
with an illness.
Contrary to popular belief, it's not about money, benefits,
attention, self-pity and so on; it's simply about self identifying and healing.
It's about reclaiming, and repairing our identity.
It's about finding community, inclusive to our natural
"culture."
See, we do not think of being Autistic as an illness. We
do not consider it an illness. The mainstream may associate the word with that,
but we think of it as a difference, and subsequently, a culture of
people. When you criticize our naming of this difference, it is
like criticizing a culture. Would you ever say to a first nations person
"don't label yourself!" if they decided to begin using a traditional
name which may reflect the nature of their tribe and ancestors? Just like this,
we know the name "Autistic" to be a description of our culture, and
not as an illness or disorder.
Yes, we may be affected more so, by the chemicals in our
environment. We are therefore more prone to illnesses, such as deregulated
immune disorders and complex chronic disease. For this, your help and support
is appreciated, if there is awareness for the difference between our
culture, and our likely prone-ness to health afflictions. This is particularly
because not only are we health-affected, but we are prone to fall through the
cracks regarding ethical and accurate treatment of our health issues. This is
due the way our differences in behavior cause our symptoms and concerns to
present and be interpreted.
So yes, we are affected...especially our immune and
metabolic systems. This affects some of us more severely and obviously, even to
the point of being non-verbal.
However, many non-verbal autistics that use computers to
communicate, share a similarly inquisitive and fluid way of thinking, to those
of us who are verbal.
An example of this is Carly Fleishmann, a very intriguing non-verbal
autistic young woman, whose way of thinking and belief system I can strongly
relate with. Carly also talks about those with autism, who are verbal and
therefore "more invisible." Check out the awesome and ultra clever
Carly Fleishmann, and see for yourself: https://www.facebook.com/carlysvoice
The autistic wiring type itself is not an
illness. Though some of us are more severely physically affected by immune
attacks that may interfere with the brain, there is growing evidence that suggests
those symptoms are not related to, or affecting, actual intelligence.
Unfortunately, many non-verbal autistics remain "trapped" by their
physical symptoms.
Carly Fleishmann has been an inspiration in terms of finding a
way out of that, in the way of something like a modern day Helen Keller.
However, and sadly, many families are inhibited in terms of helping their non-verbal
autistic child. Not enough is known about how to "unlock" these
physical symptoms, and sometimes, parents don't have the money for the
therapies their child may need.
Being Autistic means having a brain based in a naturally
different operating system. It's most likely based in an atypically reversed
thinking process; objective first, and then subjective, as opposed to the opposite,
which is typical. This initial tendency to poly processing created all kind of
challenges for us, in typical social environments, in employment positions, in
healthcare, in the ways in which we ask for help with our human afflictions...
in society. We ask for your understanding, support and possible
enactment of allying advocacy.
I will continue, and close, with the excerpt below.
"I ask the "anti-label" people to think twice,
before they criticize our need to call ourselves Autistic People. We are Autistic
People, and we now have a term many of us use: "Au"
So, it is for our
identity, healing, closure and true self-actualization, that we become
rightfully diagnosed and/or self identify as autistic. Naturally, we feel
the need to clarify, to protect ourselves from further
judgment and resulting discrimination.
We desire to find peace with a more truthful representation
of our identities, amid an un-evolved and subjectively judgmental, feudal
society. The best way many of us have felt we can do this is: naming ourselves
as "Autistic."
So, what's the harm in that? The underlying motivation for this
"labeling" of ourselves, actually follows the ideology of those who
are (rightfully so) trying to discourage all this other subjectively judgmental
"over-labeling."
In retrospect, and in fairness, the world is still
"label and categorization" dominant.... and we can't change
this instantaneously.
Therefore, we meet it halfway with the closest "label"
to the truth. I hope that this explanation will have those who are likely to be
"the anti label" kind of people, understand us better. People such as
those coming from new thought and spiritual communities, environmentally and
ultra health conscious communities, nature lovers etc. They are often very
"anti-label”. And we too understand why. This is the sum up I could think
of saying to these people, which is from my last blog:
To all of you "non autistic, empathic friends", we
share many of your beliefs. We are like-minded with you, on
many things. You may not entirely understand us, what we appreciate is
effort...and, we want you to know that we're not merely and solely suffering
from an environmentally-induced, to be saddened by; to be pitied. We also
want you to know that it's hurtful and frustrating to us, when you shut us down
by saying "oh, don't label yourself, just be "etc.
Although we may share like-mindedness to you, in beliefs about
health, environment, social justice, sustainability and reform, we are still
different in terms or our social communication style. Again, this is because we
are different in terms of our base brain wiring. We still often have a harder
time with spontaneity, we retain differences in learning, we are neurologically
wired differently, and we may in retrospect have strong word ability...but we
are still consistent with Autistic.
There is a basis of science behind this, if observed accordingly
and thoroughly.
So, I hope that the above explanations make sense, as to
why we find it frustrating, even agonizing, to be as
continuously denied as we are currently being. We have often been through
hellish experiences pre identifying as Autistic.
The identification helps us heal, grow and come together. In
lieu of this, we ask for more support from non-autistic people
from all backgrounds, general beliefs, and walks of life. We need as much
understanding and compassion as we can get. We need research, eventual updated
precedents, open-mindedness, acceptance, community inclusion, and for one to
refrain from criticizing our choice to call ourselves "Autistic."
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