“Gather and Confer: Aur Kitni Baar Part 1”

Last month, my husband and I attended Autism New Jersey’s 35th Annual Autism Conference at Harrah’s Atlantic City Waterfront Conference Center.

I’ll be honest and tell you that we really only attended Day Two of the conference. It was the week of Diwali, and Hindus in America really have to stretch our hours to mark our festivals, since we don’t get days off to celebrate them. But when I looked around the rooms at the conference, I saw so few South Asian faces (just like last year) that I figured we are underrepresented in Autism NJ anyway, so why would they plan around our holidays.

We tried to pick talks relevant to what we are dealing with in the present as a family, so I have to say, some of them felt like being punched in the gut, reminding us that there are no easy answers to the uphill struggles we face.

As I looked around at the many teachers and other professionals, I realized that attending these events helps me place people in the context of their working lives a little better. Usually, as parents, we walk into the school and encounter these nervy, overworked young things, and they sometimes don’t fill us with confidence, plus the whole IEP process can place us in wary opposition to one another. But seeing them all at conferences, where they ask such insightful questions, I feel almost maternal concern for how much they have agreed to shoulder for our society and our kids, how much they need the wisdom and mentoring that older researchers can offer, and how much we need the special ed hamster wheel not to obliterate the enthusiasm, training and solid intentions they first bring to their careers.

Hopefully my husband can be persuaded to write about the sessions he attended, as we did split things up and try to learn as much as possible in a day. Maybe he will pony up if I watch some sci fi boringness with him. 😉

The first talk I went to was by the always stupendously competent Mary McDonald, and Anya Silver. It was titled “Increasing Leisure Skills in Individuals with ASD.” It is clearly important that we work on teaching our kids to develop leisure skills, not just because we will all perish from the attempts to fill the anxiety-inducing free time they do not really enjoy, but also because they will not be able to develop meaningful friendships and work lives without these skills. As Dr McDonald explained, not wanting to take breaks at job sites can cause problems with co workers, who may not appreciate being compared to someone who neither needs nor desires breaks, and the autistic person may feel a lot of anticipatory anxiety about the downtime, when there may be social demands placed on them which they feel unable to handle. Aside from the disruptive, ritualistic, or anti social behavior that can result, this inability to cope can also render the autistic worker vulnerable to employer and co worker abuse.

One good point made by the speakers was that both solitary and social leisure skills should be taught, and they should also be introduced to a variety of activities so that they have choices, just as their neurotypical peers do.

The research shows that leisure skills have to be taught with the same amount of dedication as work skills. It made me reflect on how most of us have to be taught how to have self discipline, yet here are autistic people having to learn to unwind!

I liked the emphasis the speakers placed on whether the leisure skills we are teaching are actually reinforcing, or whether they just reflect our desire to impose what we see as a noble goal. We cannot really declare any leisure skill mastered more than the basic mechanics if, when we fade ourselves and our prompting out, the autistic person never turns to it on their own. Food for thought indeed. Just like with neurotypical kids, we cannot assume they will automatically share our interests, or respond with eagerness to some externally imposed teachable moment.

Developing concrete leisure skills also helps our kids to make friends. Autistic people are statistically very unlikely to have any meaningful ties outside of school, so helping them to learn how to engage through hobbies is one way to address that sobering lack.

There were some useful suggestions given about how to assess preferences, how to use visual prompts in the workplace so the autistic person can choose a leisure activity to fill their break time, how to turn working skills into hobbies because that is often what busy minded autistic brains enjoy, some clubs, apps, websites and Facebook pages that can be useful, how to provide a meaningful range of choices, how to teach leisure that involves physical fitness, how to balance board and card games with video games so that our kids are not just geeking out but also interacting with others, how to use tech to teach brain to hand skills such as cooking, how to problem solve so that leisure does not become angst inducing when minor problems arise, how to practice self management, and so much more. I don’t even know how they got through the whole talk, it was so packed with information.

I appreciated the fact that the speakers reflected on how leisure skills are crucial to the wellbeing of the family unit. Too often, we are given trite advice to soldier on, when in fact, our own downtime is erased by the need to keep our autistic kids from losing their marbles. This way of life is not sustainable, and the behaviors that arise from anxiety can be ongoing (we know this up close and personally), and can damage sibling relationships. As we have done with our kids, the speakers suggested factoring in sibling interests when choosing leisure skills to teach, so that the activities can enhance family bonding, rather than creating separate schedules which further fatigue the parents and fray the already tenuous ties between siblings.

This was by far my favorite talk of the day, but the others gave me lots to mull over as well. Stay tuned!

Radha.