When you strive to ‘raise the bar’ for Autistic people sadly, you must prepare yourself to be ‘brought down’ by parents of other Autistic people. Apparently there are people out here that do not want the Autism information bar raised. (?) They actually enjoy using the low information bar on a daily basis as some kind of shield against deeper knowledge and cogent dialogue regarding Autism and the issues that can arise for Autistic people and their families. They seem comfortable in their lack of real understanding. Still using the harmfully inaccurate “high and low functioning labels” as a way to leverage things like attention and sympathies or worse yet sainthood and/or hero status. There are many examples of this on-line and in the blogosphere…where people co-opt Autism and create any dialogue they like. There are countless tragic and rude examples of Autistic people being willfully ignored and disrespected when trying to express their point of view to people that call themselves “Autism Parents” or “Autism Experts.”
Priceless Autistic points of view brimming with inside knowledge and strategies that will change the lives for future generations. When I am forced to watch parents of Autistic people disparage and scoff at these incredibly valueable ‘Autistic lifelines’ I find it horrendous. It’s as if the Autistic adult community is literally tossing out Autism life preservers for parents/experts to understand their children/clients and those parents/professionals are just too proud (or ignorant) to take a hold and float! It’s as if they would actually prefer to drown in their own flawed information.
These very hard and honest conversations have frankly shortened the list of friendships I am able to keep. Watching people blatantly disrespect those trying so hard to help them is quite discouraging and I will not do it without voicing my deep concern, every time. I respect Autistic people and friends that actually risk their own well-being by pushing past comfort levels to communicate this vital information. When I see parents and professionals displaying complete bigotry against Autistic adults while claiming to support an Autistic family member or client, this simply does not compute. People do not want to admit that this disrespectful situation exists and persists. I have even been asked to never speak of it again by one of these Moms. (??)
When parents and professionals declare that they do not want to use the word Autistic in conversations about Autism or that they are ‘not interested’ in Autistic adult perspectives…I become incensed. Being asked to not address dismay about this, to in essence just look the other way in order to ‘get along’ with this bigotry is beyond ridiculous to thinking people. So WHY does this pattern of events recur again and again in conversations asking for the Autistic voice to be honored and implemented? I can only come to one conclusion after seeing this play out each of the six years we have been on-line.
It IS straight discrimination and BIGOTRY against Autistic people from within our own community.
Horrific. If I was a parent or a professional wanting to learn how Diabetes is affecting a diabetic person’s system I would ask that person. Just as Autistic people can be queried about Autism. Do I define the person with Diabetes as nothing more than, Diabetic? Does everything else about a person fade away when they have a condition with a known name and subset of traits that are attached to their neurology? Only when bigoted people place disparaging meanings to the word “Autistic” does it become stigmatized. Shame on parents and professionals that continue to do this.
Watching other parents create and perpetuate this negative stigma is hard to take. AutismHWY has created an environment to help others be tuned into the Autistic perspectives and needs for comfort in this uber busy 2016 world.
