AUTISM AMBASSADORS CORPS’ GOAL #8: Provide direct input to researchers…

 a.    …when they are deciding what projects to pursue: The research that I am aware of deals with autism from an “adversarial” viewpoint; that it is a defect that must be cured.  However…

1.     …autism is neurological in origin.  Therefore, the only away that it can be accurately diagnosed is by neurological rather than behavioral analysis.  Unfortunately, the scientific community is not in 100% agreement that a neurological exam, that is still considered experimental, enables doctors to accurately diagnose autism.

2.     …because those of us who embrace neurodiversity would like more research into other aspects of autism that would benefit our lives.  Even those who reject neurodiversity could benefit from any research that could help them live more fulfilling lives until a cure is found.

3.     …much of the research involved with finding a cure for autism is to find a genetic marker that many researchers believe is the cause of autism.  Since the genetic marker was discovered for Down’s syndrome, 92% of all children found with it have been aborted.[1]  Any cure that is contingent upon the termination of autistic fetuses will be of no benefit to those of us who have already been born with autism.  Those who are living with autism, and who want to be cured, need to make sure that someone is pursuing that cure.  Otherwise, the autistic cure for those living with autism may never be found.

b.    …about the consistency of their findings with our own personal experiences:

1.     Some of the research findings that have been published are not 100% consistent with our personal experiences.  This is not to say that these research findings are necessarily totally off base.  We autistics might be able to share with the researchers some insights about our autistic experiences that they did not come across in their laboratory or clinical experiments.

2.     At least one researcher engaged in unethical practices to find the results that were paid for in advance by an outside party with ulterior motives.   Even if his findings could ever be confirmed by someone using proper scientific protocol, rewarding researchers who use unethical practices sets a dangerous precedence. 

3.     Some of the “treatments” that are being advocated, both in the realms of medical and psychological, are of grave concern to some of us autistics.  Some of these treatments could be classified as “snake oil,” while others have side effects far worse than any problems that come from being autistic.  I have not heard any discussion as to why the FDA has not approved the treatments when they are brought up at autism conferences.  In fact, the advocates of these treatments fail to bring up the fact that the FDA has refused their approval.

 c.    …by providing them with an autism database for the purposes of statistical analysis and developing strategies for how to help autistics: This database could be accessed on line by anyone wanting a better understanding of autism at both a statistical and personal affect aspect.  Information would be provided by autistics who possess the ability for self-advocacy, parents of autistics, teachers and anyone else who desires to provide observations about specific autistics that they know and care about.

d.    …in order to come up with a complete list of agitates that effect many autistics as well as effective countermeasures that will bring relief to autistics and their loved ones who are effected by them: The most gut wrenching aspect of autism is watching them suffer from some discomfort that seems impossible for anyone to explain.  These issues, as well as some of the “behavioral” issues that many autistics have, are often the result of them having an adverse reaction to something around them.  Although this is a proven fact, no one has as of yet come up with a complete list of these agitates nor countermeasures.

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[1] http://abcnews.go.com/Health/w_ParentingResource/syndrome-cases-rise-women-delay-childbirth/story?id=9216796&page=1

AUTISM AMBASSADORS CORPS’ GOAL #7: Work with the medical/psychiatric communities to bring more uniformity in how the diagnoses autistics, especially when it come to diagnosing previously undiagnosed adults

I know autistics who have been diagnosed with more than a dozen different aliments.  Autism, something else with autistic features or just something else altogether.  Some have been diagnosed as autistic by one counselors only to have the next counselors say its something different.  There is just too much subjectivity to how autism is diagnosed and its causing a lot of frustration and confusion amongst us who identify as autistic, but may not have the official diagnosis.  If we do have the diagnosis, a change of counselors can change all of that.  This needs to stop!

AUTISM AMBASSADORS CORPS’ GOAL #6: Speak to neurotypicals about autism on behalf of those autistics who cannot speak for themselves

This does not just apply to us speaking on behalf of “lower functioning” autistics who may never develop the ability for communication.  This also includes autistic children who are not old enough to understand, let alone explain, their autistic ways; especially to skeptical adults and peers.  Our efforts will be guided by two primary principles:

 a.    Our techniques are educational, not confrontational.

b.    We do not presume that we need to battle neurotypicals on behalf of autistics.  Instead, we hope to help both sides to gain mutual understanding and respect for each other.  This means that we autistics need to try as hard to understand the neurotypical’s point of view as they need to try and understand ours.

AUTISM AMBASSADORS CORPS’ GOAL #5: Teach Autistics how to advocate for themselves

Many autistics function at a high enough level to be able to educate others about themselves.  This requires them to combine their personal experiences with a scientific understanding of autism’s neurological roots.  This allows them to…

 a.    …have hope that many of their struggles may self correct in time or at the very least be managed.

b.    …convey this hope to their loved ones.

 c.    …help autistics develop so that they need as little special assistance as possible, especially professional and governmental.

d.    …learn what special gifts that their autistic neural configuration gives them.

 e.    …help others understand their autism and what can be done to manage it more effectively.

  f.    …help others to recognize their unique strengths so they can be better utilized.

g.    …work with those who are open to embracing, as much as humanly possible, a “team” concept for getting things done. They allow autistics to focus more of their energies on what they are best at while letting others “have their back” in areas of their greatest weaknesses.

h.    …defend themselves from false allegations about their atypical tendencies by enabling them to give a scientific explanation as to why they are the way they are.

  i.    …express to others the devastating effects of mistreatment they have suffered as well as wrongful judgments made about them.   These have had a devastating effect on their emotional wellbeing.

  j.    …remind those whom they interact with of the concept of “late bloomers.”  There is an abundance of documented evidence that many children who were viewed as developmentally delayed early in life blossomed later on.  Some of these late bloomers have been regarded as some of the greatest geniuses of all time.

Some autistics who do not function at as high of a level may at the very least be able to be taught to express some of their thoughts that they would like others to know about themselves.  Just because they may not be able to express themselves verbally, does not mean that they may not be able to express themselves in other ways.  Some may be able to be taught to use a speaking devise, writing, typing, signing, picture cards, etc.

AUTISM AMBASSADORS CORPS’ GOAL #4: Help Autistics to develop effective self-management skills that will allow them to function with as little special assistance as possible

The building and preserving of basic human dignity is essential for the emotional well being of everybody.  Help someone obtain and maintain the greatest level of possible is key in that endeavor.  Personal independence is as necessary for an eighty year old as it is for someone with a developmental disability.

When discussing the possibility of autistic self development, it is important to note the fact that I did progress in my development in spite of not being diagnosed as autistic until I was forty years old.  How did I do so?  Through working a Twelve Step program for codependency.  Why was this able to help me?  Because in spite of my neurological differences, I am still a human being.  The struggles I have as an autistic is the same struggles that I other human beings have.  My struggles may be more severe, but that just means that I have to do what all humans should do anyways: develop effective skills in stress management, conflict resolution, organizational, etc.  Some neurotypicals may be able to get away with using dysfunctional alterative to developing effective skills in these areas for quite some time, but they would be better off developing them anyways.  As for autistics, developing these skills are a matter of life and death.

I am very aware that not all autistics develop neurologically the same way I have.  Therefore, there is no guarantee that every autistic can be taught to function entirely on their own without any special assistance.  Nevertheless, all autistics should be given the benefit of the doubt and the opportunity to try to develop beyond what they are.  Yes, they should use whatever special assistance is available to them for as long as they need it, but an effort should be made to help them learn what we can do so we will not need to use them anymore then absolutely necessary.

AUTISM AMBASSADORS CORPS’ GOAL #3: The formation of groups that promote constructive interaction between autistics and neurotypicals

 a.    Autism Mutual Support Groups: I attended an autism conference in March 2010.  Most of the speaking was done by speakers whom are considered the leading experts in the field of autism.  There were a few autistic speakers, but most of the major speakers were neurotypical experts on the subject of autism.   Most of the autistics, their parents and educators all sat together in the audience listening to these speakers.  However, they might as well been on different planets because there was no interaction amongst these three groups.  This complete and total lack of dialog among the rank and file audience members was the most disappointing aspect of this conference. 

The closest that we autistics, parents and educators came to an actual dialog with each other was an autistic panel that I was asked to be part of.  We were allotted 5-7 minutes each which we tried to cram as much tangible knowledge that we could before our time was up.  After these initial presentations, there was only enough time for about 3 audience questions.  One was from a parent looking for answers for a serious problem that she was facing with her son.  The other two questions were just curiosity questions.  I believe that no more than maybe 3 or 4 audience members came up to us afterwards to engage in any kind of dialog.  I only talked to one counselor who was working with a child who was struggling with some of the same bowel control issues that I had mentioned having struggled with myself.  I gave her my phone number and told her to talk to the child’s parents about letting me speak to him.  I have not heard anything from her or the family since then.

If you agree with me that the best way to problem solve is direct dialog among those who are having these problems, then such conferences will never provide the solution.  However, I have a solution to propose that I have great confidence in, “The Autism Ambassadors Mutual Support Groups.”  It would bring autistics, their parents, educators and significant others together to discuss the specific problems that they are having.  It would be modeled largely after a general purpose Christian 12 Step support group, called “New Wine,” that I have been attending for years for codependency.  Some modifications would need to be made to make these meetings more applicable to those that it would assist, but the core concept has helped 1,000s of people in need for the past 25 years.

b.    Autistic Mentoring Groups: The number one priority of this group is to help autistics learn how to advocate for themselves to the best of their abilities.  In some case, they need more than just knowledge about autism.  Some have to overcome a variety of speech/language impairments.  Some lack the ability for verbal communication all together, but there are a variety of alternative communication techniques that they can be taught.  Some have the ability to be taught sign language.  Later on in life, they may be able to type as well as use a variety of high tech devices.  These groups, like the aforementioned “Mutual Support Groups,” are also modeled after “New Wine.”

 c.    Autism Expos: This event provides an opportunity for autistics and autistic groups to promote themselves.  This ranges from groups that provide support for autistics and their parents to autistics who have talents in music, art, etc.

d.    Autism Ambassadors Clubs: School club that would be geared towards provide autistics a safe venue in which they can be themselves under the guidance of a teacher advisor (which all school clubs are required to have).  Some schools might prefer to have a school councilor full fill the advisory role.  Furthermore, it would also be preferable to have an adult autistic participate as the club’s role model.

Nevertheless, the adult advisor(s) must recognize the need for each club to be customized to the likes of its own members.  Some may simply want to have a safe social gathering while others may want to be groomed so they can advocate for themselves.  Most autistics would benefit greatly if they could be presented with an opportunity to shine in the presence of their parents (as well as other relatives), educators and peers.  The Autism Ambassadors Club must always be looking for ways to give autistics such opportunities if they want them, but must never pressure any of them into doing something that they would not feel comfortable doing.

AUTISM AMBASSADORS CORPS’ GOAL #2: Providing the general public with a complete and current understand of autism

 a.    Autistics on Autism Conferences: There are numerous conferences on autism held every year.  However, the bulk of the speaking at these conferences are done by researchers and educational professionals.  A few of these conferences allow autistics to make some contributions while many others never a lot any stage time autistics at all.  It is the view of many autistics, myself included, that some (although not all) of these professionals come across as placing little or no value on the insights that autistics have about themselves.  The purpose of these Autistics on Autism Conferences is to give us a chance to contribute more to the discussion about ourselves and our fellow autistics.  We are not saying that the professionals do not know anything; we are saying that we know some things about ourselves that are just as important.

Another problem that I have seen at these conferences is that the information given by the researchers is of little or no tangible benefit to the no-researchers in the audience.  Especially when they are talking about possible causes and potential cures for autism using terminology that no one but them can understand.  Therefore, the Autistics on Autism Conferences will endeavor to provide information to the audience that is both relevant and understandable.

b.    Autism Web Conferences: Similar to the Autistics on Autism Conferences, except they would be done over the internet.  A web conferencing program would be used in order to enable audience participation.

 c.    Special presentations to professional training, networking, religious and social groups: There are many groups that are bound to come across autistics.  They may not feel the need to attend an all day conference, but they might be willing to hear an abbreviated presentation that is most reverent to them.  There are also teachers and medical professionals that are required to attend in-services to make sure that their knowledge stay up to date.  We would be more than happy to play a role in such in-services, even if we are not the main presenters.

d.    Promotional Videos: Provides information about autism, as well as were the Autism Ambassadors Corps stands on various autism related subjects.