55. Gather and Confer Ek Baar Phir

“Gather and Confer Ek Baar Phir: Autism NJ’s Transition Conference 2017, Impressions Part 1”

{I dare you to read the above title out loud without taking a breath}

This is what my husband and I were up to today. We attended separate sessions at this dizzyingly informative conference, which was held at the Renaissance Woodbridge Hotel. It was nice to recognize some of the people who organized the one I attended back in October. They are a dedicated bunch of people, and I really salute them for their tireless efforts year after year.

You all know I’m going to begin with trivial observations, right? Let’s just get that out of the way. I AM STILL SEEING TOO MUCH ALEX AND ANI BRACELET CLANK ON SCHOOL PERSONNEL, WHYWHYWHY. The clanking is just..no words. And this time, maybe because it was just one day off work, and it’s spring, you could tell the special ed professionals in attendance were kind of restless, and in every session I was in, there was invariably a group who talked and talked and talked so much in hushed asides that I wanted to scream. As parents, some of us aren’t as well informed as educators, so it was annoying not to be able to hear the speakers well because of all the clanking and the nattering.

My husband has promised to do some guest blogging for me, and write about the talks he attended, so let’s wait and see what he has to say. He’s quite fond of data, so those of you who like your autism with a side of numbers are in for a treat. I’ve given him a pretty severe deadline, but only time and spousal nagging will tell if he will oblige.

The keynote speaker, Mary McDonald, spoke on “Improving the Transition to Adulthood for Individuals with ASD.” Her speech made for a perfect keynote because it touched on many important ideas that were further developed by the other speakers. I’m pretty sleepy, so that’s what I will focus on rather than trying to write in greater detail that may spin my head.

Dr McDonald stressed that in order to prepare our kids for ‘adulting,’ we have to put in the effort to set standards of adulthood gradually, so that they can work on the skills needed in a timely fashion. With 1 in 41 kids in New Jersey having an ASD diagnosis, she surmised that 500,000 of them will become adults in the next decade, and the statistics for being successfully employed are not in their favor. In fact the numbers are dismal. With variables such as how much vocational support is being provided, and how many of the autistic adults who find jobs actually keep them, there is much more surveying to be done.

It is not only job-specific skills that need to be acquired, but also soft skills such as making eye contact, being able to ask questions, staying on task without needing to be prompted so frequently, being able to self-monitor and self-advocate, being as physically independent as possible, and even knowing how to handle leisure time (so that our kids don’t end up getting into trouble). All of these things matter greatly, and are essential for the maximum amount of independence possible.

Interestingly, Dr McDonald waved aside parental concerns about our kids’ high dependence on tech, and said that most of us, even if neurotypical, rely pretty heavily on tech ourselves–to wake up every morning, to drive to unknown places, to calculate a shared restaurant bill, to measure how many steps we walk, and so much more. We also, just like autistic people, rely on the input of others. So essentially, we all live a life of conditional independence with the aid of supports, and are in no position to judge the autism community. Haha. So true.

The overarching message in her talk was that we must set autistic teens and young adults up to succeed, by balancing training for adulthood with opportunities to practice self-directed decision making and critical thinking. The jobs we train kids for should be ones that match their preferences and strengths, and any supports provided, such as prompting, should be gradually faded out, so that in the end, they enter the workforce with the least amount of external reinforcing possible.

It makes sense. Our kids will be easier for employers to hire if the supports needed are not such a huge imposition on the work environment. And not always having a job coach breathing down their necks can only increase their self esteem and help them to feel less different from their neurotypical co workers.

Dr McDonald said that the goal even during the school years should be to fade out one on one student to aide ratios, since the more constrained job coach to employee ratios cannot suddenly be imposed on autistic kids when they become adults. This is fascinating to us as parents. We are always conditioned to think that 1:1 is best.. But we must face these brutal realities, no?

With the intent of developing functional skills early, transitional education should be focusing on job sampling so that students can demonstrate some natural ability and interest in a particular line of work, and can then practice all aspects, including how to handle setbacks. As all the speakers emphasized, it is most important that our kids are happy, and their employment should ideally contribute to that sense of happiness. There were many examples given of how to help students set up workflow systems, and I must tip my hat to the intuitive nature of special education in that it observes, documents, and really tries to make a meaningful impact on a young autistic person’s future.

One point that was made struck a chord with me. Dr McDonald talked about how, if an autistic kid had to pick between complete independence (completing a task alone) vs interdependence (interacting with others to complete tasks), they will almost always pick independence, because avoiding interaction is the preferred path. It reminded me of conversations I’ve had with various American friends, who pride themselves on being very independent in their life skills, and on teaching their kids to be the same. These conversations always make me aware of cultural differences because, in our South Asian families, learning to be part of a community, sharing tasks, and not viewing needing help as a loss of dignity–these are highly valued qualities. So, as people of South Asian origin, living in the US, raising autistic kids–we are really challenged in our assumptions about what’s important!

I have no more to offer you tonight, sweet readers. My bed is calling to me like Scylla and Charybdis. I go to my fate. More later.

Radha.

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