Camden needs snow boots. We live in the Chicago area, so it is only a matter of time before we get some accumulation. But, Cam hates stores, especially large stores like Target or Walmart; and if I force him to go, he acts out. I was thinking of forcing him to go anyway, so he could try on boots. But last night I was on the Asperger Experts website and re-read their articles about “Defense Mode.” I probably need to review their website and courses everyday! I am a slow learner, and autism is not an easy subject for neurotypicals like myself to understand. Anyway, this part caught me.
Think about terror gripping you whenever you step out of your house. Think about feeling assaulted by deafening sounds, blinding lights, and foreign smells everywhere you go. Imagine the crippling guilt, loneliness, and shame you feel when you can’t perform basic tasks because you’re unsure if that task is going to overwhelm or destroy you. And finally, imagine being terrified of life. -Asperger Experts
My son has confirmed to me that this is how he often feels. But, I keep expecting him to be neurotypical, act neurotypically, and respond to life neurotypically. No wonder he acts out. But, I’m learning. And, I ordered the boots from Target online. ~Lou
For more, see Asperger Experts on the Sensory Funnel.
I just finished reading the new, groundbreaking book on autism called Neurotribes, The Legacy of Autism and the Future of Neurodiversity, by Steve Silberman. This is a GREAT book. It is a must read for anyone who is autistic or loves someone who is autistic. It opened my mind like no other text has. It also confirmed what I suspected after I first encountered Asperger Experts: If you want to understand autism/Aspergers, you need to include the perspective of people who are autistic or have Aspergers themselves. There is no substitute. For decades, neurotypical therapists and doctors have gotten it wrong and have done more harm than good. Now, with the neurodiversity revolution, we are finally respecting the real experts, i.e., those who live with autism. If you read one book on autism this year, make it Neurotribes.
I wrote the comment below on an Asperger’s forum today, and I got several “likes,” so I think it probably resonated with a lot of parents who have been in and out of therapist’s and doctor’s offices like we have. I made some minor edits to the text to clarify information, but here it is.
In response to a mom who posted about how frustrating it can be to work with professionals:
I totally feel your frustration! We’ve had mostly bad luck with doctors and therapists. My husband and I are taking a break from professionals for a while. Only a couple have been helpful; most have had no idea what autism or Asperger’s is really about. I’ve found more answers reading Facebook forums and blogs about autism and Asperger’s. I especially like Asperger Experts Private Group and their main website. Also, I get the most useful information from articles by actual researchers and specialists (see sfari.org), and reading work written by Aspies themselves (see Musings of an Aspie). It’s only people on the front lines who truly get it. People with generalist’s backgrounds who have read a couple chapters on autism are mostly guessing or applying a neurotypical lens to an autism-based issue. More and more, I feel like I have to trust myself and trust that nobody is going to work harder at understanding my very complex son than me or my husband.