Thursday, September 25, 2014

Entry 61: To The “Anti-Label” People

Disclaimer A

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'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:

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."

Thank You

Rose Whitson-Guedes

- Rose Whitson-Guedes

*Like what you read/wish to support? Diary of A Girl Outside The Box and others (Kindle) are available to purchase via the "books" link on my site!

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