“Of all the therapies and various interventions we tried before you were able to write to us, did any help you?” I asked Emma the other day.
“No,” she wrote and then looked me in the eye and said out loud, as if I might not have understood her, “No.”
I have written about what we would have done differently had we known all that we now know ‘here‘ but still, I have to admit, I was surprised.
“But what about OT?” I asked.
“It is helpful to move,” Emma wrote.
“But did it help?” I asked.
“It’s helpful to move,” she wrote again.
And then I realized. I was doing that thing that people so often do. I was asking her a question, she was answering and then, because I couldn’t fully take in her answer or because I was hoping for a different answer, I was asking again. If this were an interrogation it would be called, “leading the witness.” Asking questions to elicit a particular response.
“Really?” I said, without thinking. This time, Emma didn’t even bother to answer, she just looked at the timer and observed out loud, “Six more minutes and study room is allll doooooone!”
I know for parents new to autism, these words may strike terror. I remember early on being told about a parent who chose not to do any of the recommended therapies and being horrified. Wasn’t doing something, even if it wasn’t helpful, better than nothing? And then I met Henry and Kamila Markram. They are the two neuroscientists who came up with the Intense World Theory of Autism. It was Henry who suggested that if you could create a stress free environment for your young child, if you could shield them from surprise, create a calm, safe environment, you would do more for them than any therapy currently available.
Now for those reading this who are thinking I am saying this amounts to doing nothing, I’m not. But there are those, like Uta Firth and Anna Remington, who insist the Markram’s recommendation, to lessen or adjust the stimuli in autistic children’s environment, is comparable to Romanian orphanages’ and go on to say, “insufficient stimulation and impoverished neuronal input in early development are damaging to children’s social, cognitive and emotional functioning3.” Except this shows a serious misunderstanding of what the Markram’s are suggesting. Neglect, mistreatment and being chained to a bed are not what I would call providing a safe, loving, environment free of surprises and lessening of outside stimuli.
All children crave stimulus, but with the hyper/hypo-sensory issues that confront most if not all autistic children, Dr. Henry Markram suggests sheltering children in a comforting environment that minimizes surprises, sudden unexpected changes of plans, entering new, unfamiliar environments without any preparation, sensory assaults from loud sounds, bright lights, etc. He especially suggests avoiding confrontational behavioral therapies that demand eye contact, verbal responses, compliance and restricting movement. What makes sense to me? Following the child’s lead in seeking out craved stimuli. This is an aspect of Floortime that I think is a good approach.
As for other suggestions on “the right way to do it” I’d love to hear more ideas from our autistic readers. What do you think would be truly helpful?
Ideally we would have more scientific studies that show which of these various ideas are correct and that parents should do x, y and z while knowing that they were doing the right thing, the best thing, for their child, but we aren’t there yet. So until we do know, without a doubt, one way or the other I am going to continue to look to Autistic people and my daughter to guide me.