This part of the series is a meandering essay on the negative perceptions associated with certain words, my thoughts on perceptions of language, NT perceptions and a framework of understanding needed for advocacy. Some of the conversations I was in while researching this specific issue were a bit heated… and I will admit, I got angry… if I offended anyone… I am sorry.
Let me start by saying that this essay may alienate many of my viewers. It is not my intent to do so. While this essay is directed at the Autists who read, it is also intended to be an eye opener for those NTs who care about us. Especially parents… the attitudes I find damaging to the greater good of Autists everywhere start at childhood.
Back when I started this series, I made a post that stated Autism is a Disease. That part of the series can be seen HERE. I’m not going to rehash the information and views expressed there, as there is little point in repetition for repetition’s sake. I am however, going to comment on the need for acknowledgement of this status.
Recently, I have been in several conversations where fellow Autists have vehemently denied and decried the label of “disease” for Autistic Spectrum Disorders. I will admit… It all boils down to negative associations that this specific word carries.
The source of my frustration is that when confronted with the medical definition of the word, many will focus on one or two Aspects of the definition.
For a refresher, here is the medical definition of disease:
“an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors”
I, for one, don’t see the negative connotations of this definition, so I asked. I asked Autists on several message boards and forums… I asked them, “Just what and why is there a stigma associated with this word?”
The responses fell into one of three generalized categories.
- The definition that you have provided is so vague that it can include, almost literally, anything.
- No one has ever died of Autism.
- Autism is not caused by a germ.
- Impairment… I don’t have an impairment…I am just wired differently.
These responses, while still baffling to me, did provide a little bit of insight into what we are facing…
Let’s take a look at the first argument… Disease is such a vague term… anything that is abnormal can be classified as a disease. That is kind of the point. Disease is a vague term… because it describes anything, literally, anything that is wrong with the body. This has been a source of frustration for me… A major source, honestly… Until I realized that Autists and Aspies like things cut and dried. We don’t like vagueness in our lives, and a term that is as broad as this one is, can be a major source of frustration.
I am not here to try to convince anyone to use the term… but that is the wonderful thing about language… no matter your personal opinion, if the definition fits, then the word applies… whether or not we like the vagueness of it, it its… but let’s look at it another way… as opposed to being a vague word… it is relatively precise when you look at it from a different standpoint… If the answer to, “Are all your biological systems (body and mind) functioning within the established mean and norms for a human of your age, sex and gender?” – is no… then the word disease applies.
The second argument actually made me laugh. “No one has ever died of Autism.” I actually laughed so hard that I had an asthma attack… And I would like to apologize to the several people that made that statement. I know you did not realize that I had done that, but I wronged you on my end, I am sorry.
There is an inherent problem with this argument… Not all diseases are fatal – especially the genetic ones. Lupus, pophyria, rheumatoid arthritis, Hutchinson-Guilford progeria, Graves’ disease… These are all drastically life altering, but not fatal unto themselves.
|This is the Asperger’s Germ… Deal with it!
“Autism is not caused by a germ.” This is the reason that I listed genetic disorders… none of these are caused by germs, parasites or pathogens… As such, it is evident that diseases do not have to be caused by any of these things. Further… I came to the realization that this argument is actually firmly rooted in one of the diagnostic criteria for Autism… A fascination or preoccupation with parts or pieces of something. Our very condition makes us lock onto that ONE part of the definition, in spite of the fact that it says, “This, This OR This.”
That being said, one must also remember that the causes of Autistic Spectrum Disorders are unknown at this time… It may very well be caused by a germ… either in us, or genetic damage dealt to one or both of our parents… we just don’t know.
“I am just wired differently.” This is the one that has been a major sticking point for me. I believe that this statement has it’s roots in the recent movement in self esteem. The “we’re all okay,” movement as I have called it. And this is great… The fact that many Autists, high and low functioning alike can demonstrate this level of self esteem does my heart a great amount of good.
These are all valid emotional arguments and I (after getting angry and annoyed beyond belief at percieved ignorance) actually revel in the diversity of views presented… but this stance, on the whole, hurts the Autistic Spectrum community.
When discussing the state of care for Autists, there are several things that crop up over and over and over… There is a perceived need for:
- Autism Advocacy – someone who understand that can tell the world about us and be our voice.
- Treatment – coping skills, education, training and medication if needed
- Autism Awareness and Education – a need to educate the public about Autistic Spectrum Disorders.
- Services for Autists – this is a catch all, assistance, assistants, access to the three points above, and the like
So, let’s look at these desired steps from the standpoint of an NT. I have been assured that while the following statements are offensive to the Autists who read them… your average NT would at least think these things.
You don’t have a disease… you are just wired differently… Why do you need advocacy then? If there is nothing wrong with you, what is there to advocate? You come from all walks of life, every race, all the genders, both sexes, different countries… The only thing that you have in common is Autism… So… what is there that needs to be advocated?
Isn’t treatment for sick people? Why do you need to learn social skills? Just get out there and talk to people. Pfft! Medicine? For what… you being a social reject? Do they make a pill for geek? What? Why are you mad at me? You’re the one that said you are just different… So’s that band geek, or that goth… Right… overstimulated, what ever… You’re just looking for attention.
Awareness and Education:
Look, I am tolerant of your behavior, but I don’t have to like it. Why do I have to be aware of you… especially if there is nothing wrong with you. So, you’re wired differently… every person is unique, suck it up and deal with it…like the rest of us.
Services for Autists:
There’s nothing wrong with you… You said so, yourself. Why do you need special services?
What it boils down to is that we can’t have it both ways. Autists are people with special needs, whether it be alone time, understanding, a helper, or more… But the stance that many take, “There is nothing wrong with me – I’m just wired differently,” hurts us as a whole.
While groups like Autism Speaks do damage to the reputation of Autists in the eyes of the public, we do more damage to ourselves with this stance. The concept that there is nothing wrong with us automatically conjures an expectation of behavior in the minds of the NTs around us. By demonstrating the behaviors associated with Autistic Spectrum disorders in the presence of NTs after making this claim, we set oursevles up for ridicule and worse.
The NTs of the world are not bad people, but their culture and brains are wired so that odd behavior and such requires a specific response – ridicule. Autists that are ridiculed are often offended by the ridicule and they are right to be… BUT… by insisting that there is nothing wrong with us, we are giving up any claim we have to be able to stop the ridicule, comments, stares or worse – bullying.
By insisting that we are just different, we are stating that we don’t need treatment, advocacy, or special education or even awareness of our condition, because we are just like everyone else. This series, would be unnecessary and, frankly, arrogant if there wasn’t something wrong with us.
We demand concessions of behavior, yearn for awareness and understanding of the NTs around us… But if there is nothing wrong with us, why are these things needed? That’s right… if there is nothing wrong with us, we don’t need any of these things. Period.
Yet, herein lies the paradox, we do need these things. We crave and desire the companionship that (honestly) only NTs can provide… but these NTs have to make adjustment to their modes of thought, speech, awareness and feelings to deal with us… If we do not have special needs; if we are normal; if there is nothing wrong with us; this is supreme arrogance.
Think about it. If another Autist was in your group of friends and his special interest was trains (I know, but it was the first word that popped into my mind), and would not stop talking about it… ever… and you never got a chance to talk about your special interest… at all… ever, you would be upset by this. This person, in spite of their Autism, would be considered self centered… I know, because I’ve seen it happen…
So, think about this… NTs don’t have special interests… When you gabble on about your interest and they listen politely, and in some few cases have enough information to discuss with you… They have made a concession in their behavior based on your Autism. They understand, because they know that there is something wrong with you and are more than willing to accept it and deal with it because they did research, and cherish your friendship.
Without that, from an NT standpoint – you are just an obsessed fanboy with no concern for other people’s interests, time, thoughts or opinions.
So, you have to ask yourself this – In spite of the feeling that you like yourself and feel that there is nothing wrong with you, do you want to be viewed as an arrogant ass with no empathy or ability/willingness to connect with others? Because if we drop the Autistic Spectrum Disorder… that’s what most NTs see us as… and if we don’t have a disease, if nothing is wrong with us, then there is no need for that diagnosis.
Simply put – without there being an underlying cause, there is no point in even considering yourself Autistic. Use the word you want – syndrome, disorder, disease… they, literally, mean the same thing… But if there is nothing wrong with you, then the diagnostic criteria are nothing more than an odd, misplaced Astrology sign that is entirely too accurate.
And here is the point where the tough love comes in. If you feel there is nothing wrong with you, then why are you even claiming to be an Autist? If there is nothing wrong with you, then why are you taking the time to bother telling people, research your condition? Why are you telling people that you are an Autist, and then telling them that there is nothing wrong with you? That kind of double talk is confusing to NTs and Autists alike and is damaging to us as a whole… The NTs you tell this eventually come to the conclusion that Autism is either a made up diagnosis, or is being used as an excuse.
What’s worse, though, is that this attitude gets back to lawmakers, who are notoriously lacking in intelligence and they believe it. They decide where the money for special services goes… and if Autism and Asperger’s are made up… if there’s nothing wrong with these people, why should we give money to services that will help these fakers? You are in a situation where your self esteem is hurting people who need these services… Your self esteem is directly effecting me.
And lastly, if there is nothing wrong with you… you literally have NO RIGHT to ask for understanding or accommodation in any situation as it pertains to your Autism. Think about it. This isn’t just my interpretation, but this is how NTs feel about it. They will make concessions for friends, but as an Autist, we often need accommodation for people who don’t even know us… it happens… and you are asking them for preferential treatment without any reason at all… After all, there is nothing wrong with you.
I know this essay has rubbed a lot of people the wrong way, but I hope that it has also inspired thought. In the modern world, we need to be self advocates, educators of those around us, and take our treatment plans into our own hands… but we can’t do that if we are in denial. I see it as a two edged sword, self esteem is a wonderful thing and lets people survive what seems insurmountable obstacles… but if it gets in the way of being realistic, we lose all that we have worked for and are working towards.
For the record… I felt the same way… but as I started the self assessment and analysis that led to this series and my understanding of the mechanisms behind my condition, I had to face the fact that there is, indeed something wrong with me. It was difficult to accept and even harder to adjust to… but it has not diminished my self worth in any way… it has given me the freedom to explore exactly what is going on in my brain and help others understand it… If we live in denial, we really have no way of moving forward, or even understanding who we are.
Images in this issue SHAMELESSLY stolen from the following sources: