Sunday, June 24, 2007
Acceptance vs. Denial
When we received Jason's Dx, we entered uncharted, for us, territory. We frankly had no idea what to do first. We knew we wanted to help Jason in any and every possible way. We did not know how to do this. Jason at that point responded to us very little and had no working communication skills other than pulling us in the general direction of things he wanted and crying when something was wrong. We had no choice but to rely on "experts" and literature. My wife and I are not "joiners", so support groups and the like were not at the top of our list.Any and all information we gleaned at that time, though, was to be viewed in the light we cast on it. We had a choice to accept the Dx, or to deny that our son had been Dx'd correctly. I do not remember a time that we flat-out denied the fact that Jason was autistic. I do, however, remember that "curing" his autism was something we viewed as a goal. For those of us in the Western world, it is difficult to accommodate a situation that does not have a cure - that some brilliant scientist, therapist, surgeon, or inventor can put a Silver Bullet into the problem and *snap* make it disappear. So, we accepted Jason's autism and set out to help him in any way, the favored way being to find a cure.
Cure vs. Treatment
I am the Thinker, and my wife is the Doer in our family. I took my role seriously, and began to research autism. Of course, I went to the internet. I spent about 6 months looking at all recommended treatments and cures for autism. I parsed and supplied the info to my wife (and my parents, who were a huge help through all of this), who initiated the plans. One month after Jason's diagnosis, he was enrolled in an behavior modification/skill acquisition program (I describe it thusly because, though the agency used some ABA principles, it is in no way Lovaasian-ABA). We began to research support/funding available from the state. We had an appointment set up with a DAN! doctor. We had instituted treatments, and were working on finding a cure. I heard about mercury, and began to grow angry. I read about chelation, and began to grow hopeful. Jason would be saved!A little later in the process, a few weeks before meeting with a DAN! doc (after a bad experience with another one we had been referred to), I typed into Google for the first time "Autism Blog". I found Left Brain/Right Brain. As I read, I felt like I was on the verge of an epiphany. Not only, according to the author of the blog and all available links, were the proposed cures being sold not effective, they were harmful in many cases! Not only did acceptance of Jason's autism mean not denying it, but it also meant that I should accept Jason for who he is and not try to "de-autism" him! And this wasn't just one guy talking - it was a whole community. And most of them were autistic adults! Wow. I had never (knowingly) talked to an autistic adult before. It turns out, I realized, there are many, many autistic adults who would not take a cure if it was offered. This resulted in a whole new paradigm of thought. I have said before that we would have arrived at this conclusion on my own, we just reached it a lot faster with the help of the Neurodiversity community online.
Overparenting vs. Underparenting
Now that we knew a cure was not going to be found (though there were certainly plenty of people trying to sell us one), we had to decide - what is best for Jason? We settled into the following group of approaches:
Behavior Modification Therapy: As I stated above, this is not really ABA. There is some record-keeping done after sessions (not during). There is no negative reinforcement. It focuses on skill acquisition, parent-training, and communication skill development. Jason loves to do it, and his therapists have become some of our closest friends.
Hippotherapy: We take Jason weekly to ride horses at a very special place called R.E.I.N.S. Horseback riding is said to improve gross and fine motor coordination, provide an opportunity to "bond" with the horse, provide self-confidence with the skill acquisition, and numerous other benefits. To my knowledge, none of these are proven to be true. We don't care, as Jason loves it, and its a very healthy hobby to have.
SLT: Jason's speech was very slow to develop, and is still very atypical at age 5.
That's it. Jason's progress over the years is very comparable to the anecdotal stories we hear from all areas of the autism community, especially those who pursue some of the more extreme biomedical treatments. When deciding what to do to help Jason, we always think to ourselves "When Jason is an adult, will he look back and believe this was something we did TO him, or did FOR him?" This feels like a good approach. This way, we are doing everything we can to help him grow and progress (avoiding underparenting) while not reacting too strongly to his autism that we put him in situations that are unhealthy for him physically or psychologically (avoiding overparenting). By carefully listening to autistic adults, this is not all that hard to do.
"Equal" vs. "Special"
Probably our most current decision-making is based on how Jason fits in with the family, our and his friends, and general society. One way to look at this is in how he is treated and what expectations of him and others that we have - is he "equal" or "special". How we deal with various situations ranging from misbehavior to achievement is dictated by this difference. There is too much to discuss on this topic to include in this post, so I will leave it with this brief statement, and discuss it further next time I write: Jason, like every human being, is Special. The fact that he is autistic is simply the most easy-to-identify aspect of his special nature. But the goal is for him to be perceived as an equal by his peers. His autistic nature does not place him above or below anyone - it simply is part of his makeup. He is both Special and Equal.
These are just a few of the choices we made (though they are some of the biggest ones) over the past 2.5 years. We hope we've gotten it right so far, and hope to be right more than wrong in the future.
Sunday, June 17, 2007
Around mid-afternoon, Lisa calls. Her first question is, "Where is the fire?"
"Fire? What fire?"
She was driving toward our general area - we live on a high hill overlooking a spot where two river valleys join - and saw large plumes of smoke. So I went outside the front of the house and - wow! A major wildfire was burning close by. I ran down the street a short ways to get a better view, and it looked like it was burning very near to my parents' home, which is about 1.5 miles as the crow flies. I relayed this to Lisa, and she went straight for their house. My parents are out of town for the time being, but reachable by cell phone.
Anyone who lives in a fire-susceptible area such as ours has a plan in place for this type of occurrence. While Lisa dashed for my parents' house, I started inventorying our own belongings. A big fire can travel very quickly, and this one looked big. I got the pet carriers out and made a list of things we would need for the kids for a few days. Lisa contacted my parents and received a verbal wish list of things of great value to remove from their home. Wedding albums, rosaries, pictures, videos, financial docs, etc.
When Lisa filled her vehicle with things from their house and returned home, she told me the fire was within 1/2 mile at most of my parents' house (she was right), and burning hot. I immediately left for there to grab more things. I brought the video camera. I realized soon after arriving the the firefighters were throwing everything they had at it, and should be able to control it. There were three helicopters repeatedly filling their tanks and dousing the fires, as well as two air tankers (the low-flying planes I noticed earlier) dropping red powdery fire-retardant in advance of the flames.
The following video is taken from my parents' back porch. For some perspective: the house is perched on a ridge over a golf course. The chopper will approach a lake on the course and hover very low over it. It is at this point dangling a hose - about 20 feet long - into the lake and sucking water into its holding tank. It then flies over to the blaze and empties the tank, then immediately returns to the lake. There is a pesky palm frond in front of my camera (let's just say I am not a world-class journalist), which I had a hard time avoiding because I am perched on top of a landscaping wall while filming, and therefore not very maneuverable. When the chopper takes off from the lake, you can make out a stream of water faling from the hose. Then, though much of its flight is obscured by the palm frond, you can see the chopper drop its payload of water on the fire (picture is not clear - look for a dense white spot under the distant helicopter). Sorry - I would have stayed and gotten better video but there was a major fire burning about 1/2 mile away and I was in a bit of a hurry.
Long story short, the blaze was extinguished, and no homes were lost.
Those who live outside the U.S. may not know that each of the 50 states has an official motto, or slogan. Some examples are: Missouri, "The Show-Me State"; New Mexico, "The Land of Enchantment", Texas, "The Lone Star State"; or my personal favorite New Hampshire, "Live Free or Die".
Days like Saturday often remind me why I often joke that California, currently known as "The Golden State", should be renamed.
How about: "California: As Seen on Television."
Saturday, June 16, 2007
Monday, June 11, 2007
Those who have taken the time to consider and understand the range of strengths that autistic individuals have I think can agree that problems in employing said individuals are job-related, not so much person-related. Autistic indivudals do not have identified deficits in reasoning or other cognitive capabilities – the differences tend to fall more in the area of social and communicative areas. In other words, given the right employment circumstance, anyone can be productive. I think that, as the digital/information age advances (providing ample technological communication/commerce formats), as global trade barriers continue to erode (forcing issues such as language aside), the opportunity for autistic people who exhibit significant communication differences from NT's will expand dramatically.
Civilization has advanced in the amazing, relentless way that it has in large part due to trade and commerce. Not only has trade been one of the "prime movers" of ongoing development of civilization, it has also been a strong facilitator of progress. For example, look at the Roman Empire. It was built on trade - using economic motivations to expand territory, establish long-range, effective communications, defining legal and political systems in which trade disputes could be addressed, etc. Military might, though more emphasized in the context of history, was secondary to trade in ancient Rome- without the motivating factor of commerce, there would have been no need for expansion and technological advancement, and hence a lesser need for a strong military. The point to be taken from this is that a free economic marketplace is perhaps the most powerful determinant of the success or failure of any venture. Or, applying the same reasoning to autism advocacy, should autistic individuals exhibit strengths in the application or development of new business technologies, the acceptance/advocacy movement will be changed forever. And I feel that some recent research findings relating to Autism, combined with what I perceive to be a subtle, but massive, shift in focus in the world of commerce may just provide a far more level playing field for autists to display their prodigious talents. Trade’s positions as motivator and facilitator may just now be crossing into areas that positively affect autistic people, in other words
While recognizable historical advancements in humans' ability to trade are well-defined (stone age/colonial age/industrial age/space age), only with the most recent major changes have the most basic elements of trade been changed. Historically, a couple of prerequisite attributes which have only recently begun to be understood, have dictated who could effectively perform the front-line duties involved in commerce, attributes which do not continue to play as big a role. These attributes have recently been given labels - Mirror Neurons and Trust-Busters.
Mirror Neurons (MNs), as a quick Pubmed search would indicate, have been closely studied in relation to autism. 16 separate studies are currently listed. Mirror Neurons, in essence, are typical motor neurons that are specially recognized because they not only “fire” when assisting the self in performing an act, but also when observing another individual performing an act. You may have a group of neurons that fire each time you grasp something with your hand – a subset of those neurons, the “mirror neurons”, will fire when observing a friend grasp something with their hand. While it is not currently known if MN dysfunction affects all individuals with ASD, certainly the research indicates that it is prevalent (Williams, JH 2005, Oberman, LM 2005, Ramachandran, VS 2007). It is the MN system that may contribute to some of the most apparent social differenes between autistic and NT people.
Trust-Busters, as they are not yet a subject of research as relates to Autism, are less firmly established but likely also play a role in ASD. The term loosely refers to behavioral tendencies or characteristics which lead one person to a lower level of trust in another. Some examples of this would be: sarcastic tone, shifty eyes, over-urgency of communication, promising more than can realistically be delivered, etc. Trust-busters are built into the neurology of the observer, not the performer. Trust-busters, unlike MNs, are not firmly qualified in the field of science. I have to ask my readers to take a leap of faith with me here, and assume that MN dysfunction can lead to a lesser ability to perceive commonly accepted trust-busters. By not easily perceiving, via the MN system, when a person is clearly lying during an interpersonal exchange, the “trust-busting” system is impaired in function as well.
Business Ethics have, since the dawn of commerce, played an extremely significant role in moment-to-moment, day-to-day transactions. Business Ethics (and, accordingly, the rule of law) largely are in place to avoid the ability of one party to exert their will on another. What has long been obvious by common sense but is now, as discussed prior, being cast in a scientific light, is the role a person’s cognitive attributes play in the ability to successfully negotiate and conclude a complex business interaction. And what’s more, it is obvious that many of the ethics-based actions expected by both parties in business interactions cannot be controlled in an electronic environment. Take, for example the handshake. In western culture, it is traditional for a deal to be confirmed with a handshake. The strength of the handshake, the length, the openness with which it is presented, the direct eye contact while it is taking place, the smile that accompanies it (or doesn’t) – all of these are powerful social cues that leave each person involved with the interaction a clear impression of the results of their efforts. Historically, those who have a lesser ability to perform and understand these social cues are at a tremendous disadvantage in the world of commerce. In a digital environment, the closest equivalent is probably an electronic signature – something that is clear and purposeful, with no room for misunderstanding or hidden meaning; not at all based on social cues, but only on a concrete basis.
And that, in my view, is what is changing so much. Digital business environments, due to the need to establish new ways to enforce business ethics, are establishing platforms of trade that diminish the importance of social cues and complex negotiations. Global trade has forced individual cultures to not only force themselves to understand and accommodate the “comfort zones” of other cultures, but also to build ways to conduct business that minimizes the impact of cultural and language differences. As this trend progresses to its logical end – a trade environment free of the necessity to understand the trade partner’s cultural background and that ensures a transaction in which business ethics are guaranteed to be in place regardless of involved individuals disparate abilities to perceive and understand the communication of them – opportunities for autistic individuals to work in fields (such as sales or purchasing) that have previously been difficult for them to penetrate will increase. It is well-recognized (though anecdotal, as far as I know) how over-represented autistics are in certain fields such as software development and engineering as compared to other fields. These are fields that require of their workers many of the strengths that autistics possess. They also require much less of their workers of the skills that autistics tend to be weaker in. Imagine a situation where virtually all career paths are less dependent on high-level social functioning (MNs and trust-busters). This is the direction I see things going in. Take a field such as financial analysis – people who are looking to pay a financial analyst for their services are looking primarily for two things: expertise in the field (evidenced by performance) and a high degree of trustworthiness (evidenced, varying by culture, in social cues indicating that “I understand your need to perceive and can mirror back to you my trustworthiness”). While expertise is not an issue for autistic people who are willing to learn this trade, evidencing trustworthiness can be, due to differences in social functioning. Currently, due to this difficulty, it is more challenging for an autistic person to break into that field than a non-autistic person with equal levels of expertise. Is this fair? No, but no one is “deciding” to shut out autistics – it just happens as a matter of long-established societal expectations of the behavior of this particular professional field. As technology advances, this will likely change, allowing a more level playing field for autistic people in many fields.
This is a complicated topic, and I hope I am doing it justice with a proper explanation. To summarize it briefly: I think that autistic people will have an steadily increasing ability to select careers of their choice in the future, as foundational obstacles that result from social and communication differences specific to Autism Disorder are diminished in importance due to changes in generally accepted business transaction environments.
Wednesday, June 6, 2007
Today I drove up to El Pueblo de Nuestra Senora La Reina de Los Angeles de Porciuncula (Los Angeles, for short. Or, most commonly known as L.A.). I am on the Board of Directors of an industry association, and today was our quarterly board meeting. In it, we discussed (among many things) whether we are delivering to our industry members what they expect based on their annual assessment (money). As my colleagues droned on about such fascinating topics as finance reports (yawn) and tax strategies (snore), my eyes glazed over and I began to think on other things. I began to realize that this voluntary trade association was in some ways analogous to ... the Autism Hub. And since the discussion centered on "How are we directly benefitting those who look to us for benefits", be it active members, associate members, or people with shared interests, I began a checklist in my mind of why, as a consumer, the Autism Hub is so valuable to me. And here, for your perusal, it is:
- Sense of Community: As the parent of an autistic child, I place great value on the exchange of information with other parents. The only thing that is of even more value is the input of autistic adults. For those who have not walked in my shoes, it would be impossible to explain the sense of relief imparted when I had my first lengthy online dialogue with an autistic adult. This was the first time I had first-hand experience with someone who had faced similar challenges to my own son and had grown up to become a thriving adult. For those of us who are active in the autism community, it is so easy to forget that, for many parents, the first time they have ever given autism more than 5 seconds of thought is the day of their child's diagnosis. And, more importantly, parents are not told about the "upside" of autism by professionals and many first-response support groups. Doing a Google search to find info about how to approach this as a parent, and landing softly among a group of impressive autistic bloggers and accepting parents, is about the best thing that can happen to such a parent.
- Depth of Understanding: As an NT person, autism and autistic people can be challenging for me to understand. Anyone reading this, regardless of neurological makeup, is only able to take meaning from it within their own frames of reference. But in dealing with any number of autistic persons, and communicating with them in a casual format that allows ideas to originate from diverse sources, I have gained great appreciation for the depth and breadth of thought expressed by both my NT and ND friends in the community. Not only have I been placed in a better position to shed myths and misconceptions so well engrained in the popular literature about autism, but I have also been able to deftly avoid the "parent traps" such as Poor-me Syndrome and Cure-at-all-cost Syndrome due to the information I have been exposed to by the Hub bloggers.
- Leads on Other Sources of Information: It is not at all uncommon for Hub bloggers to present info from outside sources. So instead of being a closed community, the Hub is just a jump-point for a huge range of information (most, but not all, of which is topic-specific) on the web.
- How to be an Ally: A common and valuable tpoic of dicussion on the Hub is: How can non-autistics be of benefit to autistics and autism advocacy? This issue waxes and wanes in popularity as a topic, but permeates much of the language and tone of most discussions.
- Darn Good Reading: I have rarely seen a more diverse or intelligent group of people gathered in one spot. As literacy is the tool we have at our disposal to communicate via the internet, it is not surprising that the level at which it is applied exceeds what one would find in other environments. Humor, controversy, hard science, philosophy, emotional discourse, ethics. It can all be found here, discussed intelligently. Take, for example, Bev's post today about Robots. It's a classic. From so many standpoints. Where else can I go for this type of post, which combines humor, education, and a personal reference for me (a man whose son is repeatedly talking like a robot. "I ... want ... milk.") Answer: Nowhere else.
- Ability to Contribute: In my daily life, my wife and I have a full plate. We raise two young sons and recently enjoyed the arrival of a third son - now 5 months old. We have a good-sized property to take care of. I own and operate a small business that is very demanding. Lots going on. In light of these factors, it is not possible for us to be "joiners" in terms of grassroots community involvement. So, this forum provides an conduit for contribution. However small, I feel that adding my voice to this community can and will make a difference somehwere along the line in the life of my son and other autistic kids growing up today.
- Decentralized Organization: One thing that has made many western societies great is the free, virtually unfettered exchange of ideas. The Hub directly carries on this tradition. No one tells me what to post. Anyone is free to chide me or encourage me for my writings. I am free to offer opinions to any Hub blogger, and will typically receive a response. Many people who do not blog on their own read the Hub regularly. It is an open-exchange environment. No moderation. No rules. Just a mission statement which places acceptance of autism in the proverbial Pole Position.
So, there you have it. Some of my reasons for continuing my consumption of, and contribution to, the Autism Hub. See you there!
Saturday, June 2, 2007
Let's start with a definition:
active support of an idea or cause etc.; especially the act of pleading or arguing for something
Advocacy seems to be at the heart of the issue. In my view, advocacy can take many forms. One manifestation is when a member of a community/class/group/race speaks out or otherwise takes action for the betterment of his group. Another is when a individual does so for himself (self-advocacy). Another, simply by definition, is when a community/class/group/race is supported by someone outside their own boundaries. Needless to say, there are many other forms of advocacy - an almost infinite number, to be sure. One primary point being discussed in this debate is; Who is qualified to advocate for autistic people? I think, based on the comments I have seen, that everyone involved in this discussion agrees that autistic people are most qualified to advocate for other autistic people. By saying so, I am not indicating that I feel non-autistics are incapable or should not advocate for autistic people. As strong (if not stronger) an ethical obligation exists for a parent to advocate for their young child as exists for an autistic person to advocate for their community. I see it as in no way inappropriate for thoughts originating from parents of autistic kids and autistic adults to coexist peacefully on the Autism Hub. I do, however, acknowledge that Larry is making a very important point, and perhaps the main point of the entire debate/discussion: Whether or not the Hub is where it happens, autistic adults need to not only self-advocate, but advocate for the entire population of autistic people loudly and strongly. Which leads me to my next definition:
1. the activity of leading; "his leadership inspired the team"
2. the body of people who lead a group; "the national leadership adopted his plan"
3. the status of a leader; "they challenged his leadership of the union"
4. the ability to lead; "he believed that leadership can be taught"
Please notice, first of all, the the definition of leadership implies the following applicable characteristics: Activity, status, and ability. While all of the autistic adults who I have read and enjoyed communicating with (mainly via the Hub) have all of these prerequisites, most any child does not. Much has been commented in regards to parents "speaking for" their kids. I submit that, until a certain age, parents are morally correct and morally obliged to do just that. We must provide leadership in the form of role-modeling, inspiration, motivation, fulfillment of basic and complex needs, etc. to our kids. Then there is leadership in the autistic community. I have yet to see an example on the Autism Hub of an NT parent attempting to take a leadership role that supersedes input from autistic individuals. The very fact that our voices exist on the Hub, and on certain days and on certain topics may be louder than those offered by our autistic fellows on the Hub, in no way indicates that there is an attempt to "hijack" (to use Larry's word) the Hub from autistic people. I am working hard to not feel offended by the implication. I will assume, unless told otherwise, that Larry's position on this assumes a lack of intent on part of the parents to drown out autistic voices, that instead Larry is advising that we be cautious that the contributors on the Hub do not become so imbalanced that the autistic bloggers become displaced.
One message my wife and I plan to communicate carefully to our son is this: Being autistic does not entitle him, or anyone else, to preferential treatment. It is his god-given right to fight for equal treatment. There is a difference. And I, for one, hope that my presence on the Hub does not work to the detriment of the equality of all contributing persons. If I were convinced it was doing so, I would cease immediately. Otherwise, I plan to continue on. And I plan to do so in a spirit of Fellowship, which is my last definition:
fel·low·ship (fěl'ō-shĭp') n.
The condition of sharing similar interests, ideals, or experiences, as by reason of profession, religion, or nationality.
The companionship of individuals in a congenial atmosphere and on equal terms.
A close association of friends or equals sharing similar interests.
This is how I view the Autism Hub in its current incarnation - a place of Fellowship. On the home page is the following "Mission Statement":
"Autism Hub promotes diversity and human rights, with ethics and reality as the core guiding principles; aspects include empowerment/advocacy, acceptance, and a positive outlook."
I see no cases where this mission statement is violated, by any contributor to the Hub.
My summary is as follows: If all of us who enjoy the benefits of having a place on the internet such as the Autism Hub can act in the spirit of Fellowship, understand that there are many aspects to the issue of Advocacy (all of which are valid and acceptable), and let the autistic people who choose to do so provide Leadership, I think we all will be better people for it.