Directly after hearing Ty's results on the M-CHAT and that he was "at risk" of being Autistic, I turned to online support. I wasn't ready to discuss it with family and friends yet, and I needed information, pronto! I found a group of parents who easily accepted my scared self in. They helped me through the early intervention process. They directed me where to go to get an official diagnosis. They explained to me what words like Hyperlexia meant. They told me it would be okay. They also told me a bunch of less than helpful things, like "the Autism Speaks website is a well respected resource." Over time I learned to sort the good from the bad, but at the same time, the group slowly felt less and less supportive.
Something I finally understood, something I wrote, some place I drew a line, and suddenly, I was looking across that line at those who once stood by me. I had stepped over towards acceptance of my Autistic children, and that made me unacceptable within the group. More than that, I tried to help others towards acceptance, offering my sincerest support, and that made me more than unacceptable. They didn't want to hear all the things I had learned about Neurodiversity, about the Autistic activists and advocates I had discovered, about how love was always better than hate. I agreed to leave and their parting words to me were "no good deed goes unpunished," and then "ding dong, the witch is dead." That's what became of my first support system.
I know it is painful as parents to learn that our own ableist beliefs and practices are the true cause of our fear and pain upon our children receiving a diagnosis of Autism. I am still trying to forgive myself. Far far worse though, would be staying in pain, refusing acceptance, and denying our children their right to be loved all the way. Sincere support guides a parent across the line from hate to love, from fear to understanding, even if it hurts at times, no, because it hurts at times. As hard as it is, that parent also slowly discovers the beauty of acceptance, for the child they once mistakenly grieved as lost, was right there standing on the other side of that line.
I find it disheartening that parents of newly diagnosed children have to wade their way through the muck of those who have been around and yet refuse acceptance. It is one thing to be ignorant and afraid. It is a completely different thing to linger willingly in ignorance, spreading fear along the way. If I could measure the tears I cried while reading from the Autism Speaks website, the weight would break your heart. Fear filled me up, and I was guided to that awful place by supposed support. Yet when I countered, with legitimate information about Autism, from people who actually knew right from wrong, Autistic people, I was shunned. Either I stayed in the muck, or I was alone. Not quite like my parent peers, and not quite like my new Autistic friends.
It's been three years since that M-CHAT. I have been sorting all the while, the good from the bad, getting mightily discouraged too often, but also building relationships where sincere support is exchanged. Recently, a good friend and Mother to an Autistic child, Beth, started a community for parents like us on Facebook, called Parenting Autistic Children with Love & Acceptance. The page took off as thousands of parents, Autistic parents, and also Autistic adults invested in their future generations, joined together to begin building a sincere support system. In order to keep the community safe, Beth recruited a dynamic and dedicated group of women, and I am honored to be one of them.
This lifts my heart, supports it. Thousands of people have crossed the line, or they are trying to, or they now have the opportunity to, and we all want love and acceptance. A big thank you to Beth, and to all of those who have sincerely supported my family and me. I am not alone. We are not alone.
If you need sincere support, or if you can give it, join us.
Parenting Autistic Children With Love & Acceptance.