Saturday, November 2, 2019

#Autisticsspeakingday, tenth edition

Jane Strauss posts #Autisticsspeakingday, tenth edition on Facebook

Here we go- and one more time, autistics speak on the interwebs, in our own voices.

The original Autistics Speaking Day was conceived in response to a poorly conceived allistic-designed attempt to mimic what it is to be an autist. It seems they thought that if people gave up internet communication for a day, they would know what it is to be an Autist. Ironic, as most of my autistic community 9and that of many others) is centered on the Web. So, some activists (can’t at the moment remember who) came up with the idea that we would bombard that same web with our own thoughts, feelings and concerns. We have been doing that ever since.

Landmark anniversaries are often used for taking stock of progress or changes, and I think I’ll do a little of that. What is different from 10 years ago?
Ten years ago autistics were bringing to the attention of the general public how hateful and organization self-named as Autism Speaks was, hateful of and to autistics. We were pointing out that it had no autistic people on its Board, and less than 2% of its budget actually provided assistance to autistics or our families. As of their most recent available IRS 990, a year ago, AS has a single #actuallyautisticadult on its Board, term set to expire at the end of 2018, and about 1.5% of its budget actually goes to services and grants for families and autistic people. No significant change there.

Ten years ago, autism was represented as a malady of little white boys. Now, adults, females, and nonwhite people have been recognized as being impacted too. More of us are now in the professional limelight as well. So, some improvement.

Ten years ago, the manipulated research by Andrew Wakefield attributing MMR immunizations as a major cause of autism was still widely available. It would be close to another year before his research was discredited, the paper retracted, and his medical license revoked. Unfortunately, despite these actions, a significant number of individuals continue in that false belief.

Ten years ago, schools were pretty regularly failing to comply with IDEA, provide free and appropriate public education, and meet students’ needs. There were significant reports of abuse. Especially low income and nonwhite special education students were likely not to graduate, and to end up in the juvenile or adult correctional systems. Unfortunately, though there are now more specialized programs for autistic students, failure to provide adequate education, ongoing abuse, and the school to prison pipeline still make the news at least weekly.
Ten years ago, there were a few small organizations of, by and for autistic adults. Now there are more, and a number of publications have been developed collaboratively by these organizations. There has definitely been improvement in the area of advocacy and program development.

Ten years ago, I had been formally diagnosed only five years before, thought I had found my people, and was attending autism conferences. In the intervening ten years, I have come close to burnout, found that my dual status as Jew and old enough to be the majority’s mom or grandma seriously limited my enjoyment and acceptance by those people, and decided that the age gap may be too large to bridge and I lack the spoons to continue such attendance. Verbal abuse and unjustified assumptions about my beliefs and motives contributed. This is neither bad nor good, it exists, and I wish those folks well in reinventing the wheel without counsel.

Ten years ago, when autistic students aged out of the K-Transition programs, they fell off a service cliff, unless they were extremely brilliant, came from a wealthy background, or both, and could use their exceptional thespian skills to successfully fake neurotypicality. Now, the cliff is still there though every day or two I see people posting about another nice nonprofit with a day program (with or without any employment training, and usually without pay for the workers). Invariably, when I point out these warts, I am tone policed and told that they mean well and we should accept the crumbs thrown at my community. Meh.

Ten years have passed. I am older, tireder, presumably wiser, and still fighting a social service system designed to keep disabled and low income people in our place. That system, under el Tangerino’s Regime, is far from improving. Our family situation has improved marginally, no thanks to the organizations claiming to exist to better the situation of “people with autism” (as if our neurology is somehow separable from our essence). We have all been diagnosed with immune dysfunctions that we are trying to treat but which explain a lot. I have had more experience in using the doublespeak required by Governmental Agencies and Programs to justify their limited largess. The biggest challenges still are garden variety helpers, though an exceptional one will sometimes show up. I am thankful that my son has aged out of the tender mercies of the Minneapolis Public Fools.

Ten years ago, our state had no governmental organization oriented to the specific issues that autism raises. Now there is a quasi-governmental group, I participate in it, and the jury is out as to its impact.

Ten years ago, I still had hopes of getting back on a career track. At 65, that seems less likely.

Ten years ago the engine of Autistic Adult Energy had just begun to roll. (There, I finally relate this to the photo at the top, and a common interest for many autistics) It’s been slow to pick up speed. Perhaps after another ten years, the Neurotypical Ruling Class will develop some level of empathy and our lives will become more livable. Perhaps then the average age of death for autistic adults will approach that for the Neurotypical population. Perhaps then it will become more possible for autistic people to follow our dreams, work for income, pay the bills, live included in the larger community and be understood as the unique individuals we are.

Maybe in another ten, or twenty, or thirty years there will be no need for Autistics Speaking Day. We can but hope.

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