Five things that mattered this week in autism and why – June 9, 2018

Whether you’re an autism authority or “just” a parent like me who lives and breathes it through my twin wonder boys, each week brings a parade of events, insights and aha! moments that impact our special loved ones. Here’s my take on this week’s noteworthy items – both autism-wide, and me-deep from my own daily slog through helping my kiddos to grow, and achieving some normalcy on my own.


1.Justice Department threatens ACA’s pre-existing conditions. Given autism is often treated as a pre-existing condition, Wednesday’s DoJ decision not to defend pre-existing conditions coverage in the Affordable Care Act in a case brought by 20 conservative states before the Federal court is frightening. The DoJ agreed with the states that the ACA’s coverage and pre-existing mandates were no longer constitutional and that they should be struck down. Regardless if the Federal court agrees, it’s is a harbinger of legal and personal fights to come – to ensure our loved ones get the care they deserve, and are not passed off with half-baked excuses for denied insurance coverage like a life-long congenital disability.

2. Sadness and a call to kindness and self-care. This week’s suicides of prominent individuals cast a pall over the nation with a chorus of mental health experts attempting constructive dialogue to ward off what data apparently suggest is often a surge of such events following publicity. Long ago I recall a far more savvy parent than me saying the one thing that’s good about a lower functioning kid is that he’d never worry about terrorism or nuclear war – and had a sustaining knowledge that someone would always take care of him. I take heart in a weird way that my kiddos are not likely to experience schaudenfreud. Yet still remember a fellow parent of a 12-year old at the time stating her son wanted to end it all – and frightening instances where bullied autistic individuals did what they were told this way. OMG world, can we please take a big breath and love each other – show kindness – and act inclusively.

3. What autism feels like, from the inside.
Ever wonder what it feels like to walk in your child’s shoes, experience their sensory discomfort, or hear and see the same life through their prism? This TheInvisibleStrings Asperger’s forum post chronicles peculiar behaviors I know I’ve seen from my guys – from listening to the refrigerator, to why an old movie always fascinates, to delays in responding to questions. Most importantly the author explains in painstaking detail the body experience of those with faulty neurology. Gives me pause, literally, when I’m asking Will the same question six times, annoyed by his slow or absent response.

4. It’s IEP season, and….
harried parents repeat after me, as I’m readying to do in a week: “The I in IEP stands for Individual.” – Say it with all the patience you can muster as you remind administrators that there’s no one-size fits all shortcut to helping your kid to grow while solving their latest resource crimp.

5. Autism Graduates. So heartening to learn of cousins, nephews once removed etc. who completed high school and are moving on. Now let’s strive to find a place for all of them in the work world. Progress on this front is so superficial and incremental, particularly for the more affected among us.

Me-deep – tendrils that went a mile deep at our house

1. What’s inside out can be righted. Jeff showed me that yes indeed, he can turn a shirt right-side out, and after only a few weeks of practice. Yes, he needs prompting but I live for moments of learning like this. Someday he’s going to fold all his own clothes, and I can watch hands-off and sip a Viognier. Ha!

2. Reading is fundamental. Will’s new-found interest in reading books with caregivers and me is heartening. One of the saddest aspects of my own daily walk with autism is that my guys don’t read. Their logographic knowledge is amazing and picture assisted memory is also huge, but decoding phonemes into expressive language hasn’t happened – yet. Will’s interest put the Yet in that sentence. I just dusted off an individualized reading program developed by one of our finest S/LPs, who abandoned it around the same time she decided she no longer wanted to treat our boys. Time to try again.

3. Nose-prints as communication. The bane of my cleaning tasks are Jeff’s nose prints on windows that my anal retentive self likes sparkling clean. Yet they’re always the ones where he can see people walking by or our closest neighbor’s huge TV which apparently has better stations than our own. Yesterday’s respite helper said Jeff’s bike ride kept getting interrupted by stops to watch people. Feels like a teachable moment in helping him find bridges from his routinized, closed world to the beyond.

4. Food raids as communication. – The downside of Will’s Weight Watchers participation – down 8 pounds, extremely slowly and with see-saws of progress – is that he’s genuinely hungry. He’s always been a chomper and we know how to position ourselves in the evening and keep an ear out for him attempting to forage the garage refrigerator – we thought out of boredom or simply loving to eat. I haven’t quite figured out the magic formula for him but he’s adapting to new patterns and I’m lucky he loves lettuce and vegetables. I’m also mindful that he may have other hungers – driven from boredom, dislike of hearing CNN and yakking political commentators each night, or some other feeling he gets from eating that I don’t know.

5. Like Arwen says…..there is still hope. Balance is not something I do well, as I strive to live out a ditty I saw on LinkedIn this week (inset) and apply new mantra to “move the ball forward” and not just with work. My classic struggle is to avoid putting something of my own choosing at the top of my list, ahead of curing autism or saving the world one tech company at a time. Yeah, I have way too many action items, interests and top priorities. But every once in a while I do what I need and it works. Like my new Pilates class or typing these words before I dive into the work piles. There is still hope for me, too, just like my guys. Just like us all.

Five things you can control (attributed to Arianna Huffington)
1. Your attitude
2. How forgiving you are
3. How you start your day
4. How you treat your body
5. How many times you get back up