Everybody Stims.

I hear a lot of talk in the autism community about self-stimulatory behavior, known colloquially and in shorthand as “Stims” or “Stimming.” For the most part, the self-advocates have convinced most people that stimming is good, it relieves stress/helps focus, and that autists should be allowed to stim. This is good, but I would like to go further than that and say that everyone stims.

Yes, that's right. I did, in fact, say everyone stims. Don't believe me? Think of a time to when someone was nervous or impatient. Did they rap their fingers? That's a stim. Did they tap their foot? Stim. Play with their hair? Yes, that's a stim too. Even things like whistling could be a stim. The point is, everyone does it to some extent; the only reason autistic stims seem so unusual is that our versions are different.

There is also of course the seemingly unusual sources and frequencies of the need to stim, but those are due to our hypersensitivity to sensory stimuli and changes. A lot of the non-autistic world is foreign to us, and therefore we have a higher level of anxiety when dealing with said world. I have a certain degree of confidence that were I to pluck a non-autist from their home country and put them in a foreign land, they would be stimming much more than they do at home.

“But Cisco, people look at my child strange when he stims!” Does the child notice? If the child does not notice, then perhaps a re-evaluation of exactly why this bothers you is in order. Likewise if the child notices but values the joy stimming brings over the strange looks they receive. Now, granted, extenuating circumstances do apply to this: If the kid is flailing their arms about in the knife section of a store or in a museum, there are practical concerns there. 

Still, if you must control a child's stimming for whatever reason, I would suggest evaluating the stims and channeling them into one or both of two paths: Either find a hobby or skill that utilizes this behavior and encourage them to pursue that, or find an “accepted” stim similar to what the child is actually doing and see if that relieves them in a similar manner.

Unity in the Autism Community

The entire controversy over Curtis Jackson's remarks seems to have brought an interesting facet to my understanding of the autism community: When faced with a common enemy and a common goal, they were able to set aside the differences they had with each other and unite to accomplish their intended goal. This posed the question to me: How, then, can we retain this unity and move forward to have common goals accomplished?

Having talked to a close friend of mine, we pondered the situation together and came up with a rule of thumb for a common goal: The common goal should not benefit one facet of the community, but the community as a whole. Extended, an ideal goal, for universal support, should have a way of benefiting all of humanity.

Therefore, this means that anything there is a massive divide over, no matter how important advocates of each party believe it is, should be shelved in favor of the common goal that benefits all. Ideally, if said partisan goal is a means to a universal end, there should be deliberation given towards how to approach that end universally as far as can be done before partisan debates are needed.

Clearly, the universal goal everyone involved with autism seeks is for the children to lead a better life. However, not all sides agree on how the better life is to be achieved. The neurodiversity advocates argue for autism to be seen as a differing mindset to be accommodated to by the community, and the biomedical advocates argue for autism to be seen as a disorder to be treated. However, I think, with a slight amount of compromise, there can be a common goal to be found.

I believe that common goal is to see autism as something to not be afraid of or feel hatred towards. It is something to be looked at and handled on the individual level. Some will choose to alter themselves or their children with drugs and other means, some will choose to keep their autism close to their heart and live with both its benefits and its drawbacks.

The compromise, however, is that the neurodiversity advocates must take a step back and allow the biomeds to do what they feel is needed to help their kids live a better life, and the biomeds must speak out when rhetoric of autism is fearmongering and combative. We cannot be using “war on autism” or call it a “emergency” or “national crisis” when the rates go up. We cannot see these children as an enemy to be fought, or the part of them that is autistic as something that needs to go away. If we're to fight for a better future for these kids, let's do it together, not as enemies. The world is tough enough on them as it is without people claiming to speak on their behalf fighting each other.

Celebrity, Autism, Oppression by the Oppressed and Public Opinion

Edit 7/8/2012: Curtis has finally posted an apology.  The wording is a little strange; after all, didn't he mean to offend the person he was replying to? "I realize my autism comments were insensitive, however it was not my intention to offend anyone and for this I apologize." (found at https://twitter.com/50cent/status/222033753386647554 ) 

Edit 7/5/2012: Curtis has deleted the tweets, but has still made no public acknowledgement of saying them or an apology for them.  More edits as the situation changes.

On the second of July, the rapper, producer and businessman Curtis Jackson, known to many as "50 Cent", posted two posts to his Twitter account that enraged the Autism community:

"yeah i just saw your picture fool you look autistic ‪#SMSaudio‬ RT @yung_raditz @50cent Release the album or get shot again" ( Previously found at https://twitter.com/50cent/status/219978810689470464)

and

"i dont want no special ed kids on my time line follow some body else ‪#SMSaudio" ( Previously found at https://twitter.com/50cent/status/219980077855809537) .

He followed up with an "apology" for the Special Ed. remark that seemed more like a jab at how the program worked than an actual retraction of his opinion:

"just kidding about da special ed kids man, i was in special ed day said i had anger issues lol" (Previously found at https://twitter.com/50cent/status/219983198527045633 ) .

As many people have already talked about the event itself, I would rather springboard this to a discussion on how celebrity status seems to affect public opinion. Why is it that a good many people take the advice of a celebrity in fields they have no knowledge about? From the posts, it is clear Curtis knows nothing of autism; there is no autistic "look", after all, and the idea of "looking autistic" being an insult is absurd when any of the world's greatest innovators were on the spectrum. Yet people will fight his opinion, myself included, because we know there are people who will hold it as gospel if unchallenged.

This provides a catch-22: a few bloggers have said that there are better things to do than fight one man's opinion, and they are right. It is, after all, the opinion of just one man. The issue, however, is that if we do not fight it, those that hold his opinion sacred will spread it. If we do fight it, the fight will spread the discussion to people who would otherwise not have heard it, and thus we spread it ourselves. Either way, an opinion that quite rightly should just die out spreads. I choose to speak out, however, because at least speaking out shows that this view is not universally held and has opposition. And that, hopefully, will discourage other people from actively expressing such views. I would wish people did not respect celebrity views just by virtue of their celebrity, but until people take positions based on actual merits, others must fight back in order to show those views are wrong.

One of the greatest ironies, however, is that the person this insult is coming from, Curtis Jackson, is a member of a race and culture that in his very lifetime experienced and experiences systematized discrimination. He knows what it is like to be insulted for an attribute he is born with (the color of his skin), yet chooses to propagate discrimination for another born trait (autism). If he does not know autism is a born trait, it makes him ignorant. If he does, it makes him a hypocrite, especially after promoting a book against bullying. Either way, I hope the community continues to push for an apology and retraction until it gets one.  Nobody deserves to be insulted for how they were born, be it sexuality, race or neurotype.

Epidemiology of Autism: One Autist's Thoughts of Possible Reasons Behind its Surge

In many of the news reports, popular culture and talk amongst families regarding autism, I have noticed a common theme: too many times people focus on the epidemiology, what causes it, how to “cure” it and other such things.  Now, as a hyperlexic and verbal autist I may have a biased opinion, but it is my contention what the epidemiology stage is not, quite frankly, where the autism community should be focusing its efforts at the moment.  Sure, it's an interesting puzzle; I should know, I'm an analytical autist, I love puzzles.  Still, I think the focus should be on neurodiversity and integration in general; how to deal with society.  Granted, I already spoke of this in my “War on Autism?” post, so I won't wax poetic about it now.  What I will talk about is my thoughts on perhaps why people like to try to find the cause or a cure.

Personally I think there are two reasons for this, the latter caused by the former: They think autism is a net negative on the person, and the parents of children with autism want some sort of justice; by having some cause, especially an environmental cause, there is a concrete injustice done, something they can fight.

First, let me assure parents that autism is not an inherent net negative: If there are any net negative effects it's due to how society treats us, not some defect in ourselves or otherwise.  The idea that we're somehow broken does us a disservice, even if you mean the best.  We're not broken, we're just different.  Yes, we have disadvantages in many areas compared to neurotypicals, but we also have advantages over them as well.  It's a tradeoff and an integral part of who we are as people.  If we can remold society so that autists and neurotypicals work together to produce a better life for both, that should be where our efforts are focused, not trying to find out what makes us who we are.  That can be an interesting puzzle to figure out together, once we are no longer ostracized.

Second, let's assume that the many epidemiological hypotheses are false: I'm not going to say for sure that any are false, but let's perform a thought experiment here.  We're going to assume, for the sake of argument, that genetics and genetics alone is the only cause of autism.  That doesn't mean you still can't fight for justice; that doesn't mean it's your fault that your child or your grandchild has autism.  We are not geneticists playing with DNA strands knowing what we'll do; we cannot fathom what the genetic cocktail will be when sperm meets egg to make a baby.  Your fight for justice now can be to make your child's life the best it can be, rather than trying to fight some possible cause.  Autism is a tough struggle, but I view it through the lens of a civil rights struggle.  It's something that develops in early childhood, if the child is not born with it outright.  It is a facet of one's identity, like nationality, race or creed.  It is something to be proud of.

Sensory issues: A Clarification

As an autist, I have sensory issues, much like most people on the spectrum. There have been a few efforts by fellow self-advocates on the spectrum to attempt to recreate the experience of overstimulation, but I find it may give neurotypicals the wrong idea of what the autistic experience actually is. It captures the essence of the experience, to be true, but it forgets nuances that may be critical to understanding what is going on.

Contrary to popular belief, most of the senses are not in themselves magnified at all levels; while sounds, smells, sights, etc. may be more apparent to us than to a neurotypical, this does not mean that everything is simply magnified. In other words, it is not exactly the hallucinatory experience many of the videos show.

However, the reason certain stimuli cause issues and the reason we can sometimes perceive more than normies can is because of perception thresholds being lowered. That is to say, it can take less intensity to percieve something for us than for a neurotypical. Conversely, some stimuli can take a higher threshold, and are less apparent, but generally a lack of perception does not cause a sensory issue.

It is this lowered threshold that also lowers the upper limit of pain for some stimuli; we may see the sun as bright, or hear the crowds just as loud as a neurotypical, but since it takes less for us to hear it, it also takes less for us to be caused pain by it. So sounds are not amplified at an upper limit, but we can tolerate less of it before it starts causing us pain. To summarize, it's not that we hear it louder, smell it more potently, or see it more brightly at the upper limits, but the upper limit for us to tolerate before it causes pain or frustration in general can be lower than normies.

Strongholds, Throne Rooms, and the Wilderness

In my experiences as a person with autism, I have found that there are certain areas and situations that strike me as certain archetypes. No matter the particular nuances of the situation, they ultimately fall into one of these three: The Stronghold, the Throne Room, and the Wilderness.

Everyone, no matter if they are on the autism spectrum or not, has a stronghold: a place where they go to retreat, to get away from all of their troubles and undo their stress for a time. For an autist, however, this stronghold is of even more importance. The world around them has so much more stress than a neurotypical's world, and a place where they have total control of their

The Throne Room is an area where an autist feels comfortable. This area need not be a particular physical location, but it usually is. The important thing, however, is that there is an air of acceptance; that they will not be ridiculed or shunned for expressing themselves. A throne room could then be a particular group of friends, or a topic of conversation that the autist has expertise in.

Finally, there is the wilderness; an alien land, both fascinating and frightening. Neurotypicals can experience the wilderness as well, but for an autist, it is a matter of everyday life; the sensory overstimulation can be maddening at times. Keep this in mind when you talk to an autist; they may not be consciously ignoring you, but simply trying to make sense of the world around them.

Hopefully knowing more about how the environments are seem to us will help neurotypicals understand how to approach conversations, which will, in the end, help everyone coexist in relative harmony.

Autism and Speaking: Speeches versus Conversations

Growing up, I never had an issue with public speeches like most of my peers did; I prepared my speech, got up and read it aloud for everyone to hear. I was never nervous, never thinking about the judgment people might place on my words (At the performance anyway; writing the speech, however, was a different animal altogether.) I simply spoke the words and asked for input after the fact.

Conversation, however, was a different animal altogether; if I wasn't anxious, I would stutter, I would not know what to say or how to respond to a question. For years I was a poor conversationalist, even with a high vocabulary and command of several subjects. Now, one may be asking, how could someone who is so good at speeches be a poor conversationalist?

The answer lies in the fundamental difference between a speech and a conversation. A speech is a prepared document, something where the presentation has been practiced and polished. In speeches, interruptions are rare and frowned upon, the signal to start is clearly given and the end dictated by the completion of the material presented. More often than not, the speaker has a decent command of the field of study presented in the speech as well. Finally, speeches are structured, and people on the autism spectrum do very well with structure.

Conversations, however, are random discourses of words, phrases and nonverbal cues, each having to be interpreted to see which idea is being conveyed. The opportunities to speak are often not seen, and interruptions are quite frequent. Trying to find that opportunity to speak becomes a chore in itself and the thought the autist may have had as well as whatever ideas the other people in the conversation may be conveying are often lost in the focus on that moment to speak. In short, a conversation is the worst way for an autist to convey an idea.

Unfortunately, most of the world operates in the conversation manner of speech, and this will be something that ultimately will take work on both sides to bridge. The autist can benefit from training in discerning nonverbal cues, and the neurotypical can benefit by verbally announcing when they have finished communicating their idea. Both sides, of course, benefit from allowing the other side more opportunities to speak in general.

War on Autism?

Being an advocate for autism I find myself perusing a great deal of message boards and websites in general to get some idea of the zeitgeist surrounding the condition. What saddens me even more than the stories of children having to cope with the social isolation more often than not inflicted by their fellow children which society deems “innocent” and “precious” is the attitude most adults have towards autism and the wording they use for their struggles with it.

Too often the words “cure”, “defeat” and “fight” are used in terms of helping children with autism. While I am sure most of these parents and other adults mean well and only want the best for these children, the usage of these words tends to betray the stigmatization that autism has. By using these terms, there is the connotation that autism is a curable ailment, something that needs to be removed much like polio, smallpox or leprosy. Autism is more than a set of symptoms: it is an entirely different way of viewing the world. Perhaps it is a bit in the way of hyperbole, but when I hear people talking about fighting autism I cannot help but think of intolerance in the past.

For example, take the word sinister: Most people connote the term as meaning evil, untrustworthy and conniving, and due to the way language evolves, that has become the accepted meaning; however, the etymology of the word is a translation of “left-handed.” During the Middle Ages, people actually believed that being left-handed was a sign of demonic possession, something to be exorcised and cured. Even in my lifetime, being both left-handed and autistic, the schools attempted to drive traits of both from me; however, thankfully they did not believe me to be possessed by demons.

I have a feeling much is left to be done in the way of autism advocacy: I want society to eventually learn to have both parties come together in the middle, to accept the benefits autism has and cope with the drawbacks. But so long as words that divide the autists from the neurotypicals are used, words that imply autism is only bad and has nothing good to offer, that day will likely creep further and further away.

Some of you are probably asking, “Cisco, How do I indicate I want to help the autistic people I know while fostering a bridge between the two?” Well, the wording can change while keeping the intent; instead of cure, help can be used; instead of defeating or fighting autism, integrating and supporting could transmit the proper intentions. I, for one, fight for the integration of autists and do what I can to support the autists I know; what we need to defeat is not autism, but ignorance.

Autism and Entrepreneurship

One of the complaints I often had lobbed at me while I grew up with autism is that I wasn't conforming, that I didn't like what the other kids did, or that I wasn't wearing the same fashions.  Conformity was and to a lesser extent still is something alien to me, and once I realized the fallibility of authority this extended into challenging social norms outright.  I would often ask why something had to be the case and more often than not I could not find an answer that suited my curiosity.

Naturally, this lack of conformity can cause strife in social situations, including a traditional work environment.  However, one must remember that true innovation often comes from people willing to take risks and buck the status quo in order to pursue their dreams.  Autists, with this lack of conformity and obsession with a subject of interest, are perfect entrepreneurs.  Granted, the social and economic aspects of running a business may escape them, but a great many companies now focus on HR and accounting for other companies; the autist need not take those aspects into their own hands anymore.

I personally have found great joy in going into business for myself; the idea that ultimately I have full creative control of where my business goes is a relief, even if it is slightly pressuring at times.  I would encourage anyone with a child or young adult with autism to help them follow their dreams; if an employer or investor is willing to hear them out, so much the better, but if they have to break out on their own, support them all the way; after all, they might be the next great innovator.  Above all, enjoy life and all the crazy twists and turns it gives you.

The Passport: A New Symbol for Autism?

Imagine if you will a person in an environment unknown to them.  The sounds are strange and amplified, the people unaccustomed and aloof, and the environment foreign.  Imagine further that any attempts at communication are failures: People simply cannot understand what they say, and they do not seem to understand what the other people are telling them.  There are two types of people that suffer from this form of alienation.

If you guessed a foreigner, you would be correct on one count.  The other type that may not occur to most is someone on the autism spectrum.  For those of us on the spectrum, we often feel like strangers, even in our own hometowns.  It feels like being in a foreign country every time we exit our house.  This feeling of alienation, in my opinion, is why we are such fans of routine: Going to the same places, having the same rituals and knowing the same people lessens and dulls the sensory overload of new stimuli.

Many associations related to autism seem to use the puzzle piece as a symbol, with such slogans as "Until all the pieces fit", or displaying a missing piece; this, to me, is a gross misrepresentation of the autistic experience. There is nothing inherently missing or misfit in our own minds; we simply operate in a different manner than the established norm.  A better symbol would be the passport; we are constantly experiencing culture shock with every person we meet, and this experience will never end.

The passport, to me, also represents the intended goal of myself as well as many other autists and autism advocates: Integration.  We do not want to be cured or fixed outright; sure, some aspects of our experience could be changed for the better, such as the sensory overloads not being so severe, or education techniques to help us communicate more easily and effectively with neurotypicals, but above all, we want to be embraced and accepted for who we are, not changed to fit into some mold.  An immigrant does adjust over time to the culture of their new country, but most do not lose their native culture either.  Such should be the same with autism.