We held a dialogue series last week between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network, You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue
Readers let us know that they wanted more, and more perspectives, so we’re going to continue the series through this week. Original participants Zoe, Rob, and Ari are stepping back and letting other voices have the floor.
Today’s post is from Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter, and blogger at ASParenting.
My favorite Autism “quote” is one we all know too well. “When you know one Autistic person, you know one Autistic person.” Given, there are variations to this, but this is the way I like to phrase it. In my world, before joining the Parent Autism community and the Autistic Neurodiversity community, I knew four people with autism: my brother, myself, and my two children.
It’s true that what divides us creates rifts. Not having each other’s experiences divides us. Not seeing common ground, sometimes, though rarely in my opinion, divides us. Ignoring each other even in the slightest with phrases like, “You’re not like my child.” “That’s not what works for my family.” and “You can’t understand my perspective.”
There are a host of us who do understand your perspective. There are a host of us who have to be in both boats. What I have learned will come as no shock to that host. First, yes, a parent knows their child best, but you know who knows that child even better? The child. As an Autistic adult, I know myself best of all. I know my children quite well, but they are not me. It may come as a shock, but in my family none of us presents the same way. I’m quiet but extroverted. My oldest is quiet and introverted. My youngest is loud and extroverted. There are variations on every diagnostic criteria. There are variations within each Autistic characteristic.
Why am I saying this? Because it’s essential to understanding, for both sides. We are not all like each other. I know we all know that. The issues come when we forget that and apply that and talk amongst ourselves. Just because an Autistic adult is giving advice doesn’t mean they assume they are just like your child. This wasn’t in the conversation, but I understand that it is one of many issues that faces both these communities. We all make comparisons throughout our lives based on our experiences. NTs (Neurotypicals) do it, PWDs (Persons With Disabilities) do it, ASDs (Autism Spectrum Disorders folks) do it. We give advice coming from our unique direction in life. It’s then taking that advice and applying it to your situation. That is not the job of the one giving advice, but of the one receiving advice.
That is not where I’m coming from, though. I rarely take advice except to reassure myself of what I already know. I take my life experience and apply it to my children. This is the Autistic parent way. But what is happening here in this discussion is not about how I raise my kids, how you raise yours, or how the Autistic community thinks they should be raised. That’s a parent’s choice and will always be a parent’s choice. There is no one way to raise a child, and we all know that. Actually, even within families, each child has to be raised differently, even if it’s just subtle variations.
No, what’s going on here is about advocating. Who has the right to advocate? Whose voice should be heard the loudest? Whose voice is being heard? Parent voices undeniably are being heard the loudest. As an Autistic parent, I’m aware of this in a way most people aren’t. When I put my “parent hat” on, as long as I say nothing about my own Autism, I am heard. I’m heard loud and far and can affect real change. When I put my “Autistic hat” on, it’s no longer about the change. I’m supposed to be a puppet on parade, telling my life story, how I got to where I am. My life story isn’t going to tell you what will work for your child. My life story is about me, and me alone. My brother’s life story isn’t even the same. The way each of us was raised, our experiences, our lives are different.
Then there is the idea of having a “parent hat” and an “Autistic hat”. I am not just a parent. I am not just Autistic. I am an Autistic parent. There is no difference. In the same, advocacy, parent advocacy, self-advocacy, policy advocacy, they are the same. When I go into my children’s school to advocate for their rights, I’m advocating for my rights, I’m advocating for their rights and I’m advocating for the rights of those who will come after them. There is no divide. I am letting my wants known, I’m letting my children’s needs known, and while I’m at it, I explain how this helps my population. The changes I ask for are not changes for just my little family. What I do, what I ask for, affects each and every family that comes after me.
Same with self-advocating. Making myself known as an Autistic adult, explaining why I don’t want to see a cure for Autism, explaining how life was for me, is for each of my children, I am not advocating for myself, not really. I’m advocating, whether to other families, to an audience or in a one-on-one conversation, for the entire population. I don’t make a divide between those who bang their heads, smear their poop, and can’t talk. What helps one, helps all. Effective communication, emotional and sensory awareness, and support.
I get upset seeing both sides argue, even when I’m the one arguing. Because in the end, we should all want the same for our population. Happiness and control over our lives. What that means for each of us is different. The path we chose to get there is different because our lives are different.
So how can each side help the other? Parents, when you are called on to advocate publicly, privately, in your communities or in your own home, invoke that self-advocate you know. You know what we believe in, if you are listening. You know we have a life of experience you don’t. Use it. If you want our voices to be heard in the conversation, then give our voices a platform. We aren’t given that platform by the media, by society and sometimes not even within our own communities. As Zoe said, you are in the place of privilege. Use that privilege to give us a platform. If you don’t, no one else will.
Self-advocates, be willing to stand with the parents. They are our only hope to be heard. We know we’re not seen as equals in the conversation. We know we’re used to show, but not practice inclusion. We know the tokenism that occurs. It’s not the parents’ fault, for the most part. It’s an upward battle, but the only way we are going to get to the top, have our voices heard, is to be lifted up because we are the silent minority.