The parent of a child with autism found other parents on a social networking site were removing her from their group because that she made no mention of her children's diagnoses or her association with ASDs. She then felt the need to explain to the group why she was not making the children's diagnoses public or using the term 'autism' at all for her children. Her post prompted weeks of responses from group members. Here is the her post and my response:
[Parent's name redacted]
"Strict Need to Know Basis
Some of you might wonder how I ended up in your Autism circle. I’ve never written a post on here about Autism. I don’t blog anywhere about Autism. I don’t talk about Autism on any other social network. I talk about a mysterious ‘alternative education’ circle which sounds like it could mean anything. I’m sure I’ve been dropped out of some Autism advocates’ circles because of this lack of relevancy. So, here’s my explanation.
In my family, we keep diagnoses a secret shared on a strict need-to-know-basis. Here’s some of our reasoning for this.
Note: we homeschool so no reason has to be given to anyone for accommodations. In fact, we don’t even call them accommodations. We just call it finding what works best.
What does a label like Autism tell you? Does it tell you if a child will speak to you? Does it tell you if he will behave for you or not? Does it tell you what he needs, what he likes, how he’ll react in even the most general of terms? No. So what’s the point of telling anyone? If they make any assumptions or any changes in their behavior because I said the word ‘Autism’ it’s going to be a gross generalization. It will be at best have a neutral effect, at worst a negative one.
Have you ever heard of the experiment where two classes of perfectly ordinary children with the same average test scores were assigned to new teachers? One teacher was told that he was being given a class of the best and brightest at the school who also happened to be well behaved. The other was told he was getting the naughty and stupid class. By the end of the year the ‘bright’ class had significantly higher test scores than the ‘stupid’ class. I don’t know if this experiment ever really happened (I hope not!), but the moral of the story is that behavior is strongly influenced by expectations, especially among children.
Although things are much better than they have been in the past, the label of autism subconsciously lowers everyone expectations. No one finds out there’s an Autistic child in their VBS class and pulls out the more complex lesson. Nope. They’re going to ask for another helper in the classroom. They’re going to ‘keep a close eye on that one’. They’re going to push things farther away from the edge of the table. They’re going to make him sit close to one of the adults. The bar will be lowered.
Over and over I see parents, teachers, friends, and volunteers offer up Autism as an explanation of a behavior a child is exhibiting or as a way to prepare me for something unexpected. Do they honestly think that none of the other dozen children already in the room have never done anything unexpected? Do they think that none of the other children might have unique learning styles? When they try to prep playmates and other parents at the playground for their Autistic child do they really think that parents haven’t dealt with a wide range of behaviors from strangers? Don’t they know that children are the most forgiving and flexible people on the planet? If a problem arises or a teacher doesn’t immediately figure out how to involve your child offer a tip for that situation that you know works with your child. That will actually be helpful, unlike an excuse packaged in a label.
If this is not the practice you follow this is not an attack on you. I will not be offended if you tell me your child’s diagnosis. This is just what my family finds to work best for us. I hope it’s helpful to you."
"Welcome to the autism circle :D. My son is nonspeaking and profoundly autistic. Because he could have lost his life during an incident in his public school placement, I am also home schooling my son. I understand you and respect your decisions for your child. I understand your examples because my mother, siblings and I spent all our years in school combatting bigotry. I don't agree you can protect your children from prejudice by hiding their diagnoses when diagnoses may also provide positive supports later on, such as when they enter a university setting. But my perspective is different because I am a different person. And my son is different.
I am proud of my son and he is autistic. His autism cannot be hidden. He cannot appear 'normal'. I am told he will never reach a point where he might go to college, but then these were the same people who said he wouldn't get as far as he already has.
I am what our government calls a "Black of Hispanic Origin". Our children are not dark skinned. Our daughter, who is an adult, can "pass" for another race. But she tells everyone she is also black, and proudly introduces both her parents to anyone who she feels is worthy of meeting us. It is good to protect your children from discrimination. But those of us who cannot hide our differences or those of our children, teach our children about discrimination and how to navigate a world that unfortunately treats one group as less than another.
At some point in their lives, all of our children should know there are others like them who understand them and will be there for them when they may need help, should anything happen to their immediate family. It would also be good for them to know who might try to mistreat them and why.
I am very happy to have other homeschooling parents in our circle. I am always searching for resources and teaching methods that might keep my son engaged. It is impossible to generalize teaching methods for children on the spectrum. Because, as they say, if you've met one person with autism, you've met one person with autism. Happy New Year"