This post from Emma’s Hope Book blog indicates the stress of parents by a system that makes it harder for them to relate to their child. In my opinion, the list of symptoms reduces people to behaviors and makes it harder to see the person’s personhood. It is ironic because a symptom of autism is to play with part of a toy, but what about professionals who focus on part of a person? If I liked to look at letters it was bad. If they like to look at only symptoms, it’s treatment. This is hard on parents because, “Hands down,” “Hands quiet,” and on and on, become the key of interacting.
I remember hugging my mom when I was young and an expert remarked, “Wow, he sure stims on you a lot.” So in the symptom-based worldview even hugging my mom was a sign of my inability. Of course, if I didn’t hug I would have been declared distant and disinterested in people. Experts should be really wary of assuming they know, when they really don’t know yet, what is in the heads of severely autistic kids. In these cases it is like putting words into someone’s mouth–all ten of them.
The point Ariane makes of seeing the child less pathologized is spot on. Let’s listen to people with autism who can communicate to be partners, guides, teachers, role models and proof that though we may look or act autistic because of having autism, we are fully human, fully intelligent and deserving of peoples’ respect.
Thanks so much for your thoughts on all of this. Your story about hugging your mom reminded me of a therapist who told me my daughter was smiling at her because it was a perseveration and not any indication of actual emotion. I think I’d blocked that memory out as it still fills me with fury even now, so many years later.
With tremendous respect,
PS The link to Emma’s Hope Book isn’t working. Try this one instead – http://emmashopebook.com/2014/07/16/parenting-an-autistic-child
Thanks for the reminder. My son is 9, and I have heard it all from different professionals – everything contradicts what I observe. When he was younger I was also told he stimmed too much on me. I always felt it wasn’t that – and it was more that he knows that I understand him. He reacts the same way to others that over time prove to him that they also understand. Sometimes as a parent, especially during times of sleep deprivation, you can temporarily loose sight of this perspective.
Thank you both for putting a “voice” to my son’s thoughts.
How can a parent differentiate between “autism” and a child’s personality? Is my son “shy” and so I should let him stay inside the house all day or does he enjoy other kids but is more comfortable alone because he doesnt have the social tools he needs to interact successfully with other kids? What do I accept and what do I need to help him acquire wothout making him feel I am trying to change who he is? I am really stuck on this.
I would like your opinion about the early intervention that is said to be ‘essential’ if a child with autism is to be successful in life. Do you think that early intervention is of value?
I have thought a lot about your earlier post where you talk about traps in the brain and how the problem is not with cognition but with the traps making communication very difficult.
I am studying and working to change my thinking and be more respectful of Autism. I hope someday to support the type of scientific research that you are calling for.
I will write about this soon. It’s a good question.