Autistic Input

Legislated Pain

I feel a legislated wrong,
But one with no intent to harm a soul
Nor any role,
But one with no lament.

The wrong has passed;
It 'twas in vain, and now the time is laid,
As to what time that wound would need
Before the debt is paid.

The festering
Is still there, though, and yet one always hears
'Forgive the sole--it was a phase
That's one in many years.'

The wound just drifts...
And then it's e'en with all the other woes,
Until a word--a catalyst
Renews the deadly foes

That want to resurrect the act,
But now it's passed time due,
As all the legislation's done;
The foot's in ...the wrong shoe!

-Brian Henson©2007

Just like there are four steps to autistic integration and involvement in society, there are four stops that prevent this from happening, albeit over time.

The first stop along the route is ignorance. If a person ignores something, either by lack of education, information, or experience, how can that person have any form of awareness about the subject, idea, or issue? If a person chooses to ignore the basis of autism in the broadest sense of the word, how can that person be aware of what it means to be autistic? Unfortunately, ignorance is often "the path of least resistance", as by ignoring autism (often by trying to divert attention to another subject or issue); whereas, by facing the subject, itself, would require more resistance to former ideas and beliefs that have been entrenched over generations and cultures.

The second stop is denial. Often, once a person accepts that there is this subject known as autism, more often from a person in one's own proximity (family, neighbourhood) as being subject to the issue of autism, the question of why is raised, as a form of denial. "Why are we, as a family, being subject to my son being diagnosed with autism?" The denial phase is one of the hardest ones to overcome, for many, and the idea of accepting autism into their lives is often seen as a form of "surrender"--a kind of "giving in" to an "enemy". By trying to claim that the idea, itself, is absurd, these people in denial will try to avoid changes, and get back to the "status quo" of what life was like before the word "autism" entered the vocabulary. Anyone who tries to promote acceptance of autism is often up against this "brick wall" of resistance, and, finding a door through this "brick wall" is the only route to acceptance.

The third stop is the "yes, but" approach to the input of autistics as far as what each one wants for his/her life, based on the idea that others must have a better idea than autistics themselves as to what is better for their integration into society. Autistics, in this phase, are not asked what they want or how they wish to achieve it; they are told what they should want to better themselves in the society that surrounds them, and they are told in rote fashion how to achieve these "goals" thrust upon their shoulders "for their own good". To overcome this stop, autistics need help in getting their word out, no matter how much ignorance, denial, or the "yes, but" approach has been around for decades. The autistics are often ready to speak, but are terrified of presenting their ideas, as these ideas often are in conflict with what others deem "appropriate" at the time, and therefore (as one autistic stated) there is no reason to communicate--as they will be "lambasted" for expressing what is considered "ill-thought" or "unworthy of consideration", no matter how important that proposal is to the autistic individual.

The fourth stop is lack of action in prolonging the momentum, once an autistic has had a chance to air his/her thoughts on what to that autistic is important and needs to be done in society for his/her benefit and the benefit of others of all categories. The temptation is to deem that the idea is fine for that autistic, alone, but just does not fit into the needs and desires of others in any way, and must be treated as an "isolated case". This only pushes what the autistic is trying to do, no just with his/her own life, but with society/culture as a whole "under the carpet", and is like telling the autistic, "Your idea has merit, but is only applicable to your own life, not to anyone else's!". It would be like telling Vincent van Gogh that his paintings were fine for him to produce, but not to expect others to find anything at all worthwhile in his paintings; or to tell Albert Einstein that his formulas in physics were wonderful ideas for his own mind to come up with, but not to bother the scientific community with these ideas, as they might have no merit, at all, when it comes to established scientific laws.

If all of these stops could (by some miracle) be totally eliminated, there would be no problem, at all, in autistic integration and involvement in society. Each autistic person would have no ignorance, denial, or "yes, but..." framework leaning against his/her life goals, and the push would be there to let these goals be known to others everywhere as completely worthwhile, not just for the autistic, but for the benefits for all of humankind, not just at the moment when these ideas or goals are presented by the autistic, but for many generations to come, in all cultures.

The question, now, is: How does an autistic person get through these barricades or "border checkpoints"? It's not a matter of trying to avoid these crossings, as they are part of the path, itself. It's more a matter of how others can speed the process of crossing, like family/friends helping a person prepare a passport for getting into another country. However, one has to be reminded that there are four such crossings--and each one is quite different from the others. To use another analogy, when one has got through the first three stops, it's like the spiritual song, "There's one more river to cross...".

Yes, this is a journey of immense proportions, but a journey that every autistic individual yearns for--to get to his/her own goals in life, no matter how different, beyond "common sense" or unobvious those goals or ideals might seem to his/her family, community, or society. The goals are there, waiting in the distance, with four major obstacles blocking the achievement. Once those obstacle have been overcome, the idea of frustration, both for the autistic individual and those around him/her will be hard to comprehend.

The four steps, as outlined in the previous posting, are akin to the four seasons; when the year goes by, that's not the end. The cycle continues, even beyond the life of a person. Likewise, the four steps continue, beyond the life of an advocacy person, group, or global organization.

The direct comparison of the four steps to the four seasons is difficult to get a hold on, as there seems to be differences of opinion as to when, in the four seasons, the intuitive phase (corresponding to Awareness would begin), and therefore, when the rest of the analogy would correspond. Any season, in effect, could be a starting point, with the other three seasons following.

The same is true with the analogy of the four steps being compared to the four six-hour periods in a day. When does Awareness, Acceptance, Input, and Integration occur during the 24 hour day? That seems to be a very subjective matter, and very prone to debate as to what the best approach would be.

The other analogy that comes to mind is that of the hydrologic cycle, with the evaporation, cloud formation, condensation (precipitation), and surface water movement. I suppose that one could say the ground water movement is the start (Awareness), as one notices the water on the ground quite easily, even in childhood. Then the evaporation would correspond to the Acceptance, as there is no way to stop the evaporation due to the energy from sunlight. Next to evaporation (Acceptance) would be the cloud formation (Input), where the the darker the clouds (and often, the storms), the more the impact, and finally, the rainfall would correspond to the Integration, where the water is integrated back into the landscape, to show that this cycle goes on, and on.

It's like a farmer during a drought. First he notices the water levels going down--streams drying up. Then he acknowledges the water is being evaporated to the sky, but that, so far, is where it's at--without the cloud formation yet showing in his area. Then, hopefully, one day, he will see the clouds, but this might not be enough, until the day when the rain, itself, falls on the fields.

Autistic Advocates first noticed the support for autistics waining, as the label, itself was brought forth. This was the Awareness of the need for autistic advocacy. Then the Acceptance began to grow, but that, in itself, did not provide an answer--just a stepping stone (albeit a major one--just like evaporation is a major part of the hydrologic cycle). Now we are beginning to see the Input developed--like the clouds starting to form, however slowly in the sky, and this gives the autistic advocates hope--just like the clouds give the farmer hope. Then, eventually, the Integration will occur, just like the rainfall for which the farmer has been hoping.

However, the cycle could backfire, as in the case of the farmer getting too much rainfall--i.e. flooding. That would be akin to autistics being so integrated into the fold that they lose their identity, and cannot find out who they are any more, as they are just "one of the flock", and therefore are lost in the crowd (like a drop of water lost in a flooded field).

This is where the Input (akin to the cloud formation) has to watch out, and try to prevent too much integration--like a person trying to integrate every culture, religion, political system, etc. People need to be both integrated and diversified, and too much integration will only drown out the diversity, which has been going on now for a few centuries.

That is where we are now--at the threshold of Input in autistic advocacy. We must be very careful but forthcoming in our approach to the issues before us, both globally and locally, as persons on the autistic spectrum, as we go beyond the Awareness and the Acceptance towards the Input and on to the Integration, or we could find ourselves in deep water...

In the previous article, I posted that acceptance was the first step, ahead of input. I failed to realize that acceptance is not possible without awareness; that cognition must occur before recognition.

That would make the steps so far, to be: 1. Awareness/Cognition
2. Acceptance/Acknowledgement
3. Input/Impact

I would suggest that the fourth step be called Integration, for reasons I will attempt to describe later.

These four steps are based on two books; the second one based on the first. The second book was titled "Understanding Understanding" (1974), with the chief author being Dr. Humphrey Osmond, (co-authored by Jerome Agel and John A. Osmundsen). In the introduction, the authors stated that they used the same designation as Carl Jung to do with personality types, but disagreed with Jung as to the basis of the designations. Those designations were: Intuitive, Thinking, Sensation, and Feeling.

In exploring those four types, I found that, upon personal experience, there seemed to be a flow in every story or plan, from the Intuitive person coming up with the plans, to the Thinking person formulating the legal and scientific basis for the plans, to the Sensation person carrying out the plans, to the Feeling person reviewing and extending the feedback on the plans to completion.

This four-fold path was reverted to the following terms: Perception, Permission, Performance, and Perpetuity. The Intuitive person was responsible for the Perception, the Thinking person was responsible for the Permission, the Sensation person was responsible for the Performance, and the Feeling person was responsible for the Perpetuity. This outline (which was drawn in graphic form as a chart with Perception on the top, Permission on the right, Performance on the base, and Perpetuity on the left) was applicable to so many events, both long-term and short-term.

Then, this plan unknowingly, seemed to be unfolding, as far as autistic advocacy and inclusion. The awareness could be compared to the Perception, the acceptance could be compared to the Permission, the input could be compared to the Performance, and the integration could be compared to the Perpetuity.
It seems like we are just getting through the start of the Permission (or Acceptance) phase, but are just beginning to prepare for the Performance (or Input) phase at this time. As far as the first phase, Perception (or Awareness), there seems to be little more to do except continue the dialogues that have been going on for the past two decades.

To clarify the above, I would give the example of a person going into boxing, as a career. The perception of being a boxer has to be with that person; he becomes aware of his personal need to enter that career. He then gets permission to practice boxing, and qualify for various events. He then shows his performance in the boxing ring, itself. Finally, he builds a professional record, over time, to extend his boxing record into a legacy (perpetuity).

It's like we, autistic adults, have become fully aware of what we need to do to build our own "niche" in a society that seems, to this day, to frown upon us. We are starting to build permission, through the "thinking" phase into getting others to accept us--in the legal, political, and medical arenas, but we still have a long way to go to "open the gates" of acceptance; i.e. to get full permission for inclusion. Once we do get the gates open, then we need to be included in the decision making processes, not just ones that affect us, but that affect all of society as a whole, as well. Eventually, the record of integration/inclusion will start to grow, and we will build, in perpetuity, a legacy that persons in the future will look back upon with nostagia.

In the meantime, while others (mainly those seeking Permission) carry on the goal of Acceptance, we, the ones bent on Performance will prepare to have our input--our impact on society in a way that will lead those geared to Perpetuity to carry on their goal, integration, in this venture.

Why am I writing this? Is it for "self-expression", as some might say?
That leads to further puzzles, as in the question, "What is self-expression?".

As an autistic person, do I need to express my "self"?

What, indeed, is this "self", that so many (if not all) refer to?
Is it part of me, separated from the rest of me?
Is it the load centre for all liability and responsibility in this life?
Is it, in other words, the part of me that takes all the criticism, respect, shame, honour, and any other feedback that I might get from others, in living this autistic life?

Often, social scientists (including, if I may, theologians) refer to "self-love". How can anyone love the "self" that seems to be just the "control centre" of operations for that person? What if that control centre lost control, and the autistic person did something that he or she was told not to do? How, in other words, can an autistic person have unconditional self-love, when the self could place the person in jeopardy?

These are the thoughts that are going through my thinking processes (or "mind" as some lay people still call it) at this time, and I am lost as to what my role, if any, is, in this life that I am living, as an autistic individual.

When I try to express myself to others, most of the time I get two responses: either that I could not be "up to par" to their way of thinking (as, to them, I have a "mental" disability, and therefore, could never understand my condition or what I am saying), or, that my writing is too "deep" for them to understand, and they feel it's up to others to try to "figure out" what my mind is up to, in these areas; in other words, my mind, to them, is just a puzzle (similar to the many logos referred to in autistic lore).

These two basic responses (not to ignore the other wonderful responses that do come forward now and again) give me the impression that what I say has no input into the lives of others, when, at the same time, I am being pounded (by edicts, rules, threats, orders, laws, persuasive statements, advertising, etc.) into the idea that others must have input into my life.

Why is this imbalance so strong for autistic individuals?

The foundation of this blog is to make inroads into the input of autistic individuals into the lives of others around them, in settings involving the family, schooling, therapy, friendships, employment, and other social scenes.
So often, autistics might (at least today) find acceptance, but just in the form of lip service, as when a politician says to an autistic individual: "Yes, I accept you as part of the community, but, as far as your condition, I think the professionals know more than you about your condition!"

That is just the opposite of input, as far as affecting the outlook of the politician. He needs to have changes made to his views of what constitutes autistic individuals, and this requires input from autistic individuals, themselves, not by just accepting them into the community, but also in seeing what they need and want for the community in the form of design, creativity, and altruistic support for all members of the community (including, ironicly, the politician, himself).

Acceptance seems to be the first step in any autistic person's entry into a community, large or small. Input into that community seems to be the second step, with other steps just ahead (although, for sure, many are already in progress). However, before we get ahead of ourselves, let's get some input into what is going on, in all aspects of life, as it affects us daily in all walks of life.