Terra Psych: This is optics, or couching bad behavior in faux vulnerability. Autistic advocates are not shiny “independent” diplomats, and this is “alt-autism.” Creating false dichotomies to portray a “severe” and a “mild” version of autism.
I’m 39. I founded and help to run one of the largest autistic advocacy sites in the world. I’m educated. I also couldn’t read until I was in the 5th grade. I am covered in scars from self-harming. I started because I couldn’t communicate with my parents — not because I didn’t have the ability, but because they didn’t know how to listen to me. I don’t fault them so much because they didn’t know I was autistics. In the 80s, where I grew up, only the most obvious cases were recognized.
So they didn’t understand me and I felt hopeless. I’m covered in scars. I started attempting suicide at age 6. I also have always struggled with incontinence. I do not have good motor coordination nor interoceptoin, so I can’t always feel when I need to go. This is worse when I am tired. I have such severe insomnia that no medication can help. I sleep only 2-3 hours per night.
I have autoimmune conditions and epilepsy. I wear shoes with elastic laces because I really can’t tie shoes. I love clocks, but it takes me forever to read one. I can’t always speak, and sometimes when I try, it comes out in a yell. Other times, it makes no sense and isn’t what I had in my head. I’ve slammed my hands down on the table in front of me or have made spontaneous bird sounds in faculty meetings.
I’ve been accused by professionals of being on drugs because I was rocking back and forth and had strange body language.
I have a disability. I can’t always control my body or nor my mouth. I have health problems. I am not fully independent.
But none of that should matter. I should not have to show you my scars and tell you about things that cause you – a prejudiced person — to see me as less valuable, less credentialed, less expert, or less capable of relating to the struggles of both of your children. I’m a private person. Very. And I should not have to be an exhibitionist putting all my weaknesses on display so that you – a highly privileged person — should determine how much I am worth listening to.
Do you see how sick that is?
And my “mild” best friend is dead. From suicide. So is the man I loved for two decades — after homelessness and addiction for years. He was brilliant, agile, handsome, and had no speech impediment – so no one cared that he was autistic. He seemed so “normal.” Most of us have dead loved ones.
There are mothers and fathers who read our site to learn bout their dead children posthumously because they made the mistake of “mild” and “independent,” or thinking that an Asperger’s diagnosis just meant “quirky.” And they paid for that mistake — because of the damage of Autism Speaks and the ignorance it perpetuates.
There are many autistic advocates who are relatively famous who had scatolia (smearing of feces) as children. There are non-autistic people who had that, too. There are much less disabled than I am, and I never did that.
The thing that makes this infuriating is that you damn well know all of this already, and this is a public demonstration of, “I was wrong, but I had good reasons.”
You know, I am also a parent of an autistic child whom I will tell you nothing because my child deserves privacy, dignity, and respect. But because I love my child more than I love my ego, I learn everything there is to learn from autistic parents who have been doing this for years. Who have the child’s best interest at heart, who have large groups full of professional experts and other parents who are auto-didacts — a village of collective experiences, education, and creative AUTISTIC problem solving.
And I also know how much I have suffered. I also have to dress to cover all my scars. I cannot for one second without breaking down into sobs imagine thinking that my child stole anything from me or ruined anything for me. I SOB because people like you are getting more from a platform than people who know how it feels to be autistic.
So I work hard, daily, to make sure that my child never feels for one day what I felt every day of my life. I work hard to make sure that no one deemed “severe” because they’re non-speaking, incontinent, intellectually disabled, or epileptic feel that no one out there is happy they they’re alive or wants to know what they’re thinking.
But most of my work – and all the autistic advocate’s work — is pushing against these harmful schools of thought that Autism Speaks uses billions of dollars to push.
This is what autistic people want to hear from their parents: “I messed up. I was wrong. I didn’t understand, I made mistakes., and I let my ego and my fear cause me to make bad decisions. I shouldn’t have done that. I love you the way you are. I listen to autistic people because they get you in ways that I never will, and I accept that now. I also will try much harder to help you to understand me. I’ll listen to you talk about your differences. I’ll try and help you find the right people and methods to help you communicate. Your medical problems cause me sadness because I hate to see you suffer, not becuase I hate it that you’ll be someone’s burden. but your life is still valuable, and I am happy to have you exactly as you are.”
If you think that your child doesn’t understand enough language to understand that, then you can try asking autistic advocates — who bend over backwards and give their all in service to autistics and their families — to help you find better ways. Because Bob Wright wants to end us, and he always has. This is a “very fine people” on both sides.
Parents of autistic children are victims of Autism Speaks, not of autism. They’re victims of not knowing we’re out there because we don’t have a billion dollar annual budget to find the platform. They’re victims of not getting the help and reassurance they need because you are validating the ideas and attitudes that kill autistics.
Nothing is wrong with interdependence – independence is not the “gold standard” of a happy life.
You can call me severe. You can call me mild. You’d be wrong either way, but it would be easy to use me as confirmation bias for either of the two. What you should call me is “accurate.” That’s what I want from you. That’s what I want from Autism Speaks.
Tell the autistic advocacy community that they’re right. Tell them are going to be hired to replace the Autism Speaks boards and executives. Ask them how to allocate those resources. Tell them that the puzzle piece is going to be replaced by a symbol that doesn’t make them feel like they’ve seen a Swastika. Because it absolutely feels like that.
Stop telling lies. Stop couching the truth in platitudes. Autism Speaks is responsible for a major humanitarian crisis and is complicit with eugenics and the active suppression of autistic people.