I ran across this blog post over at Huffpo this morning, and it brings up a lot of thoughts and feelings for me.
Apologies in advance for the length & rambliness, but i also feel like we should be discussing it.
Feel free to TL/DR!😉
The parent/loved one question is at the end, for anyone who just wants to skip to there!🤔
As pretty much All of y’all know (since i babble of it often😉), i work in Autism, in Early Intervention.
Basically, i get to work in a small classroom of up to 7 children, with typically an adult staff of at least 7 in the room at any given time, trying to work 1:1 with “my” child that day, on meeting their IEP goals via play therapies. (Yes, i literally play—with a child, with toys!—most of my time at work😉😆😊)
Some days it goes swimmingly well.
Other days, i fail spectacularly!
But EVERY day i go, i try to help the child i work with to have fun for as much of their time at the program as i can, and also try to gently shape their behaviors into something a little smoother and better functioning in the world around them (i.e. with one of my current kiddos: something as simple as getting them to wait patiently for the 30-or-so seconds it takes me to get my gloves off in the bathroom and wash my hands before i hold my hands together under the stream of water so the child can drink after going potty. Rather than that child running immediately to the bathroom sink and starting to lick the handle & spout hoping for latent water droplets😜.)
It’s a slow process, but we get there (that kiddo IS now able to “Wait for Emmer” about 90-95% of the time🤗).
And it’s the young-child end of the story told about Ben in the linked blog above.
Ben was a kiddo like some of OUR more severe children. But back when Ben was a preschooler, places like the one where i work were EXTREMELY rare. They’re STILL rare now, outside big cities. The MSP metro region has perhaps 10-15, including the place i work, and i’m at one of the largest sites, with 8 classrooms. Another place is very similar, but i believe we are the largest two. Meaning in a state of nearly 5.5 Million, between them and us, you’re most likely talking ~500-600 children getting center-based day-treatment therapies.
This ISN’T ABA (Applied Behavior Analysis) therapy, although we can provide that too at another part of our site.
It’s a bit more of a “Hybrid” model. We use some ABA-like things (running many trials on the goal over the day, etc.), but where ABA will typically run trials in a set, we spread ours out, and don’t have to note everything as rigidly. For example, if a child has a goal of “____will stop their body independently with only verbal support 4/10 times,” rather than running all of our trials in one or two sets, we take opportunities throughout the day—as the situation arises—to do them. Like with the child who likes water in the bathroom, if they run to the sink, i’ll say, “Stop! Wait for Emmer.” And if they do, it was a successful trial, if not, it was a failing trial.
We also throw in a bit of Early Start Denver Model (ESDM) U of Michigan’s ESDM page, Specifically the emphasis on PLAY as the base for our therapies, and kind of do a bit of hybridization between the two.
The reason for all this background, is because: WHAT WE DO, at my program, HELP TO PREVENT MORE CHILDREN FROM NEEDING BEN’S LEVEL OF SUPPORT AS ADULTS.
THIS is why Gorsuch MATTERS. This is why DeVos’s appointment to head the Department of Ed. MATTERS. This is why cutting Metal Health coverage out of the list of treatments that Must Be Covered MATTERS SO VERY MUCH!
At the 1:68 rate that ASD’s are now known to be diagnosed, without the (YES, VERY EXPENSIVE!) treatment provided by places like the one where i work, WE WILL HAVE MANY MORE BENS. Young people who CAN, and ARE still making good progress—but making that progress as ADULTS, who are in Very expensive 24-hour essentially inpatient care facilities. Those residential treatment facilities CAN be great. But they are also VERY expensive, and those costs run for the entirety of the patient’s life. Life with Autism is just as long as life without it. We will all (or Someone will!) pay those costs for, in the case of someone like Ben, most likely 50-70 years.
OR, we can DO early-intervention therapies at, YES, a HUGE upfront cost (4.5-5K+ a WEEK😨)! BUT, with the knowledge that lots of the children (if not Most!) in our E.I. program will be able to be placed into “regular” schools, with perhaps a Paraprofessional to help them, and many of them can go on to function just fine eventually as adults.
BECAUSE we gave them the tools they need to manage their autism when they were little. And we show them how to calm their bodies, and ask for help. We teach them how to be safe in different situations, how to handle transitioning from one thing to another successfully, and how to manage overwhelming stimuli so they don’t hurt themselves or someone else.
Basically, to me, this can ALL be boiled down, essentially, to a matter of cost.
We KNOW ASD’s are expensive to treat.
We ALSO know that, one way or another they have to, and WILL be treated.
I will ALWAYS argue that the best time to treat them is EARLY, when the child is very small, and the physical harm they can do tothemselves and others is less.
YES, it DOES hurt to get bitten, pinched, punched, hit, or kicked!
But i would take that from a 2-5 year old, with their tiny hands and feet any & EVERY day of the year, over getting it from someone who is 6'+, and well more than 200 lbs. The tiny ones *might* cause permanent harm in a freak accident, but the BIG ones *will* eventually hurt someone if they have those behaviors.
I am the one who will routinely remind new co-workers who are scared to intervene & help a child calm themselves if a child is lashing out, “Would you rather do this NOW, or when they’re bigger than you?” and that usually brings the adult around pretty quickly😉
These kiddos are NOT going away. Some of our fellow GT’ers know and love them too! We need to support them, and give their families the supports they need, too.
Side conversational question for folks who have a loved one on the spectrum: In your area, are there any support groups for parents of children with ASD’s, where you can go just to connect with other parents, and perhaps share resources & ideas? I seem to be running into lots of folks lately who are parents/grandparents, and that’s something they mention not finding & that they would really like to see. I.e. a place where they can get together/meet up, and just get ideas & perhaps some moral support.