#AuthenticAwareness means we understand that not all autism problems are created equal
By Jill Escher
Every day I feel fairly bombarded by media, messages, and research articles about The Latest Terrible Thing in autism. Last week I heard about how terrible it is that parents speak out about their children’s disabilities how terrible it is to use the term “special needs,” the terrible terrible puzzle piece (of course!), and terribleness of autism studies not conducted by “autistic researchers.”
I admit my jealously. How I yearn for the luxury of such superficial moral quandaries.
Here’s what’s truly terrible. A muscular nonverbal 23 year-old autistic man who spends his days ripping and throwing things, and can’t leave the house without at least two strong people safeguarding him. A young autistic woman who ingests toys, soap, rocks, and even light bulbs. An 8 year-old autistic boy who has been kicked out of every school program available in his state due to his aggression. A bedroom smeared with poop. A mother who needs to pad the walls of her house because of her adult son’s history of pummeling sheetrock. A family that spends $80,000 a year that they don’t have on therapies, in-home support and home repairs. A family on the brink of sanity due to acute sleep deprivation. A severely autistic boy locked in the ER, in a helmet and arm limiters to prevent self-injury, with nowhere to go. A family that cannot take their daughter anywhere owing to her constant screaming and history of elopement. A mother who regularly turns to 911 calls to save her when attacked by her 280-pound adult son.
These are the true priority issues in autism. What the professionals call “severe, challenging behaviors,” or “externalizing behaviors.” These are things that ruin lives, break bones and homes, and impose astronomical financial costs and families, schools and care systems. No amount of wishful thinking about neurodiversity, inclusion or “autism acceptance” can make even the slightest dent in these overwhelming, calamitous problems that have tragically become commonplace across the U.S.
The number one job for autism research and practice today must be the reduction of severe behaviors. Compared to this, everything else strikes me as a luxury.
I have two children with profound “Level 3” autism, one who has severe behaviors, and one who does not. Their daily functional realities are so dramatically different that it seem preposterous they have the same exact diagnosis. I would give anything to transform my son’s version of severe autism into my daughter’s.
My son’s behaviors are so severe that not a single agency in our region will accept him as a client. My daughter’s behaviors are so mellow that she can go anywhere and do almost anything with minimal assistance, even a fancy fundraising gala, or skiing challenging slopes. My son cannot attend any family functions; my daughter enjoys all of them. The financial bill to care for my son is many times that for my daughter. My son is on five medications to help address his behaviors, my daughter is on none.
While the idea of curing autism is out of the question (you can’t cure a disorder arising from dysfunction of early brain development), finding ways to mitigate the severe behaviors may be in our grasp. At this time we see practitioners and parents throwing darts at the problem using any tools that might help, including behavioral therapy, a wide array of medications, sensory therapy, cannabis products, and in rare cases electroconvulsive therapy. Occasionally an underlying medical problem like a rotten tooth, is found to be at the root of the behaviors. Typically today’s therapies help somewhat but often they lose effectiveness or have unwanted side effects. Sometimes they are too expensive, or families can’t find a doctor to treat their children. Waitlists at the best clinics can be more than a year long.
We must do better. We need a Manhattan Project of Severe Behavior in Autism to identify better therapeutics for these patients so they can have a semblance of quality of life and to reduce the enormous toll on families, care providers, and systems. How truly terrible that we see so little research on severe autism, the area of greatest need.
But a bit of good news. At the INSAR conference (International Society for Autism Research) next month, NCSA will be working to intensify research in this area. We are co-sponsoring a special interest group, Reducing Severe and Challenging Behaviors in Profound Autism, with many leaders in the field. We see this as a starting point to make tangible differences in the lives of those with profound autism. Nothing in autism is more important.
Jill Escher is president of NCSA.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.