I couldn’t agree more with everything you wrote. From all that I have read from others in this adult workgroup, it appears that the top priorities are 1) more opportunities for those on the spectrum to get to know themselves better via social and other opportunities to get to know others on the spectrum (statewise!); 2) more education of those who live and work with those on the spectrum (parents, educators, therapists, counselors, doctors, etc) on what it truly means to be autistic from an autistic perspective; 3) more government and medical services for ALL school-age children on the spectrum (currently an Asperger diagnosis gets little if any support)…after all we can’t work on adult issues if we don’t get help where it is most needed, before reaching adulthood; 4) better transition support for those 14 years of age on the spectrum within the school system; and 5) a minimum of 2 hours of ongoing employment and/or daily living support (via private or governmental services) for those adults diagnosed on the spectrum to enable them to funtion, and maintain that level of functioning, in a world within which they can not compete without such supports.

Should these be our stated goals for this group? Are there any that I have forgotten? Thank you so much Sharon, Susan and Janet for your input. I will keep trying to lure more adults to this workgroup so that we can get even more input.

Sue

Susan Golubock led me here – thanks Sue! I am aspie, inspired into the field of speech language pathology field by a wonderful full-blown kanners who, although nonverbal, reached out to the world for the right to communicate differently. He spoke at conferences and mentored other facilitated speakers. Facilitated speakers are always at risk of losing the right to communicate. The NT world is always poised to take away their right to free speech, and then label them retarded for their inability to communicate.

My realization of being aspie provided me less understanding of myself – I know who I am – than greater understanding of the NT world. I can see ways I am still not fitting in, and can now fine tune my passing even better. But passing for 40-hours a week is such a stressor. While a few enlightened individuals can see me as a whole person with strengths in addition to my needs, I wish the general NT world could learn a little flexibility around those with differences: see past some of the oddities to appreciate what I do really well. I work in a public school and that can be one of the most intolerant environments for autism – scary when they are educating autie children!! I have learned the hard way to not “come out.”

I feel that an important mission for us all would be to celebrate our diversity and our paths to the understanding we have of ourselves and the world. We could share strategies for succeeding and interacting with NTs. So many of my generation who were significantly kanners were institutionalized. The rest of us made due without support or understanding of school or family. Girls present differently than guys. Even in today’s world, some children are receiving excellent early intervention, but others are at the mercy of idiotic, intolerant special educators who are not only clueless, but cruel. Our stories can be passed on to others interested in best practice, supported employment, and parents of auties as well as other groups. This discussion group has the potential to become a powerful tool to reach out to the NT world.

PS: Lingo varies. My personal perspective is likely to differ from yours. I refer to all of us on the autism spectrum as auties with two sub-types: those described by Kanner and those by Asperger. Some consider kanners and aspies as two distinct groups. My take is they are different only by degree of exhibiting differences from NTs in communication, social interaction, and focused interests, and are therefore not distinctly different labels. I think that’s why people will sometimes get a change in dx from autie (kanners) to aspie as their communication skills improve. Other diagnoses that are sometimes put under this umbrella are NOS, NLD, Retts, CDD, and occasionally even ADHD, tourettes, and bipolar. What do you think?

Well, I can see one of the basic problems with helping our educators and paraprofessionals get trained in autism-no responses from our contacts with Az Dept of Educ! I have someone in the schools who was all excited to get that training(it is that two or three year training program). I gave them all the info that had been given to me back in the summer from my first meeting with Az Autism Coalition and then recently when I had been told the position had changed to another individual. No reply after considerable time both times writing smail mail to Az Dept of Educ, care of those individuals.

And we wonder why there is not enough people in the districts who understand autism-here is step one of the problem. You have someone who was excited and interested and they have totally busted the bubble.

I also found out that when it was time to take the school picture of the staff, the paraeducators were scheduled to do work duty and some could not be included in the nice big framed picture of the staff for that year. Would that make you feel unimportant?? When we quit treating the para pros who are mostly in charge of our kids like second class citizens, maybe then we can start to get a better crop of para pros. They don’t even have email addresses when everyone else in the school does.

If we want to help people getted trained in autism, let’s make it as hard as possible or impossible to get information about it, ok??? (note sarcasm)

Sorry-you are catching me angry and frustrated.

Thanks for the reply. Can you help me understand this. How would the district people go about getting into this year after year??? It has been going on for a while right? Not sure I understand the “grant has run out” part-is this for this year only, or forever ?? Sorry, but I am totally naive about this. Whatever you can do to clarify will be appreciated. You should expect that I don’t know anything at all about it, ok?

Sharon