“Gather and Confer: Phir Se Part 2”

The other session I attended at the Autism New Jersey Transition Conference 2018 was by the always insightful Mary Jane Weiss, of the Institute for Behavioral Studies, Endicott College.

The topic was “Social Skills and ASD: Finding Relevant Targets for Instruction and Using Instructional Strategies that Work.”

I will throw in here that the tiny font on the PowerPoint handout makes it really difficult to go back and review what I learned, and I am currently sitting on a plane, squished between people, and don’t have access to any sort of magnification, so yeah. Maybe sending us the material via e-mail would help.

Dr Weiss began by saying that in the adult ASD world, social skills deficits remain the most resistant to intervention efforts; include problems with responsiveness and initiations; include problems in the functional availability of social responses, ie. using the skills when appropriate; and are a real world issue for adults with ASD. In this realm we see the most humble gains, and social skills are such a critical component of succeeding out there that we have to examine the hows and whys—what actually constitutes meaningful outcomes for social skills instruction; what are some meaningful and functional teaching strategies; and how to foster engagement and connection, and reduce vulnerability.

Of course, we can acknowledge that any social skills taught must actually benefit the person’s life, and also identify what causes behavior to shift. But the realities of autism interacting with the larger society come into play: people often have multiple nonverbal behaviors; adapting to their surroundings is pretty much like dealing with a constantly moving target; and skill mastery is often complicated by having to apply judgment to the myriad possibilities that exist in natural interactions.

Yet we cannot afford to shy away from grappling with these challenges, and we cannot just accept that there is an absence of meaningful engagement in the community because hey, autism is like that. All markers point to the fact that when autistic adults age out of school, they step off a cliff as far as services available to them, and in almost any outcome studied, they do poorly: working, continuing school, living independently, socializing and participating in the community, and staying healthy and safe. These are bleak and unacceptable facts, and if we are to hope for better, we cannot just pull the rug out at age twenty-one and wave adults with ASD goodbye. Nor, I would add, is it ethical or sustainable to accept the aging caregivers’ retreat from the world, often accompanied by job loss, because there is no solution that allows their grown up kids to be cared for in a way that allows the parents to maintain any quality of life.

I would like to throw in here that advocating for autistic people and their caregivers should go hand in hand. If one set thrives, so will the other. We want the best for our kids, and being willing to do whatever it takes to achieve that too often means that the government and our communities assume we will be fine, and it’s not even a little bit okay that most of the time we are completely on our own, with our own health and financial issues to contend with. Do better, everyone, I’m begging you. All the advocacy cannot come from us, nor is it okay for disability funding to come on the chopping block every time bootstrappy-oriented people hold political office. If you (general you) would not accept tossing away your career and descending into relative poverty because of laughably shoddy attention to relevant infrastructure by the larger society, then it is equally horrifying for anyone to expect us to do otherwise. It’s really as simple as that. We can say all the uplifting, positive things we want about autism, but its financial, intellectual and social impact on families can be CATASTROPHIC and cannot be borne solo by individual families in any society that claims to be in any way civilized or enlightened.

Dr Weiss is firm on the idea that social skills instruction must always have functionality as its primary goal. If the skill is to be usable, it must factor in where the person will be living and working, and what their social survival needs are. For example, let us not waste time on shoelace tying or analog watch reading when alternatives are everywhere. How do we determine what a functional skill is? According to Dr Weiss, it should not be one that someone else will have to do if the learner cannot; it should be age-appropriate; it should be considered whether the skill is needed immediately, and/or in the future, frequently, and in multiple environments (if yes to all these, then it is critically needed); it should be one that can be maintained by naturally occurring events; and it should enhance the learner’s quality of life.

Being practical in approach is the key, says Dr Weiss. Teach the skills in real settings as well as vocational; plan to start when the person is younger so there is time to acquire the skill and practice more; work siblings into the scenarios because they can be so amazing for the modeling needed; look for a readiness to be independent and grab those teaching moments; and factor in that there may be some red flag skills that may have to be addressed, like how to maintain appropriate proximity from other people; how to inhibit unusual social and verbal behaviors around strangers; and how to read nonverbal cues to the same extent as verbal ones—for example, if someone is not making eye contact, they may be trying to signal that they are too busy to answer a question right then.

As far as possible, the reliance on one-on-one coaching should be faded out, and part of the data gathering to determine success rates should involve talking to employers and co workers. The importance of data is so that the fading of supports does not lead to sudden job loss because the autistic person was not actually ready to fly solo.

It is crucial that the strengths which many autistic people bring to work (focus, attention to detail, inclination for repetitive tasks etc) be balanced by an ability to manage leisure time. I couldn’t help being frustrated by this part of the talk, though. The onus is always, always on the autistic person to basically “fake being like other people” in order not to get labeled as an overeager overachiever who doesn’t need breaks, makes their co workers look lazy, is too ritualistic, and who might potentially be accused of creepy behavior. The deck cannot be this stacked against them, we want to scream, and yet it is. It is. It is no wonder there is such an urgency, but also how are these poor outcomes to be avoided if all it takes is one person finding such a worker unbearable to be around.

Dr Weiss talked a lot about how, even though the data around using social stories to promote workplace friendly behavior is not robust, she still finds this learning strategy effective because the stories do help change behavior, and provide structure around each goal, helping the trainer to prompt and reinforce at each step.

On a job retention level, she argued, social skills help an autistic person fit in better—understanding jokes and idioms, nonverbal communication, and problem solving skills do help a person to be less of an outcast. I was mulling over how we should not discount culturally specific input as well. So often, our kids who are minorities have that added impediment, OR they have to learn skills that take them so far out of the family milieu that we sort of “lose” them to the disability mainstream, something people do not seem to apologize for at all. It is very similar to kids with intellectual disabilities being dissuaded from retaining their mother tongue so that English language acquisition can proceed unhindered. I wish we could find a better solution than pretty much divorcing your own culture in order to survive. This just reeks to me of cultural inadequacy in life skills training, and can only be remedied by more multilingual people getting involved in autism field careers. I hope more do.

As Dr Weiss elaborated on the more serious need for social skills, she mentioned issues like “survival and acceptability.” Again the need to adapt so that they don’t get targeted. How is this not creepy and impossible. She talked about how we must reduce the likelihood of them being accused of inappropriate behavior, of offending others, of perpetrating impulsive behavior. She also spoke about not being either a sexual offender or a victim, not being a bullying offender or victim, and about identifying mental health challenges. But huh, if the autistic person has to work this hard to not misstep, and they know they are always going to be working overtime to adapt, I do not see how they could achieve this magical standard of happiness that is essentially always going to be impossible to reach. As a parent, this is not okay with me, but I also know that if my child is to survive, he has zero choice.

The main message behind a successful outcome is that continued evaluation and support are a must. For that to happen, we must be able to count on our kids staying in the system, and for that system not to get faded out each time someone decides every criteria has been met. I do not plan on my child having an unproductive future, but no one does. It can happen anyway, and we have to make sure our kids never lose the mentorship they will always need. Their will to survive will depend on it.

Radha.