1) Providing the general public with a COMPLETE, CURRENT and USABLE understand of autism: Many of the perceptions people have about autism are based on archaic notions that have sense be disproven. Aspies not having delays in their verbal communication, autistics lacking empathy, not desiring socialization or friendships, not caring if they impress people, having no problem standing out from the crowd, etc. are just a few of the numerous early misperceptions that have been disproven. However, autistics continue to be burdened by them because many “experts,” especially those who do not specialize in autism, insist on pushing them on us and our loved ones. This leads to autistics not have these needs met by those who refuse to believe that we have them.
Are methods for educating the public is to create venues for constructive dialog about autism. Our venues many seem to be the same as everyone else’s, but their different for two reasons. First, they cater to smaller audiences in order to promote greater dialog. Second, they present autism in a manner that is both understandable and relevant to the audience.
a. Hosting various types of Autism Conferences:
i. Autistics on Autism/Real World Autism Conferences: There are numerous conferences on autism held every year. However, the bulk of the speaking at these conferences is 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.
ii. Putting the Pieces of the Autism Puzzle Together Conferences: There are numerous professionals and specialist studying autism. On one hand, it is good that they spend a lot of time and energy conversing with others in their same profession or specialty. This allows them to compare notes and develop new understandings about how their professions and specialties can help autistics, as well as their loved ones.
On the other hand; autism in neurological in its origins. It often causes physiological and social challenges that can result in behavioral issues. To make matter worse, all of the aforementioned issues often results in atypical social interaction resulting them being misunderstood and/or abusive treatment. Based on my personal experiences, as well as those told to me by other autistics, such abuse usually begins in third grade at the hand of the playground bullies. In short, autism affects us in more ways than anyone profession or specialty is trained to deal with. Therefore, no one profession nor specialty can produce all of the answers that autistics need.
As an autistic, I listen to all of them and can gleam bits in pieces that enable me to get a more complete understanding of autism. The purpose of these “Putting the Pieces of the Autism Puzzle Together Conferences,” is to have all of these professionals and specialists bring their “puzzle piece” to the table. If I were to personally lead such a conference, I would be the primary speaker who would submit a proposal of what autism is in its entirety. Joining me would be a panel of different professionals and specialist who would be free to interject any critiques that pertain to their expertise. They could also answer question and respond to comments by audience members, who would be anyone who wished to attend, wanting a more advanced understanding of certain points that I would not be qualified to provide.
iii. Autism Web Conferences: Similar to the Autistics on Autism/Real World Autism Conferences, except they would be done over the internet. A web conferencing program would be used in order to enable audience participation.
b. 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.
c. Informational Videos: Provides information about autism, as well as were the Autism Ambassadors Corps stands on various autism related subjects.
2) The formation of groups that promote constructive interaction between autistics and neurotypicals:
a. Autism Exploratory Groups: Same basic idea as the aforementioned, “Putting the Pieces of the Autism Puzzle Together Conferences,” accept these would be regular meetings attended by whoever can attend. Such meeting would be an essential preparation for these conferences as it would enable for the compiling of information that the lead presenter would need.
b. 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.
c. 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.”
d. 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.
e. 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
aacphoenix.com 