“Gather and Confer: Aur Kitni Baar Part 44 1/4”

It was a battle of sleepy brain and achy feet by the time the last session of the Autism New Jersey 2017 Conference rolled around. By then I had met some other moms, and enjoyed chatting with them, and that kept me from curling up in a ball. Something about listening to trained people talk about autism makes me feel equal parts empowered and fragile, the latter because the scope of the parenting that lies before us is so vast, and there never seems to be enough mental space in our demanding days to process all the info.

Also, I want to say that this year, I didn’t really enjoy how the organizers divided up the parents vs professionals into seemingly separate categories. So the professionally geared talks made few allowances for parents who want to learn without being condescended to, and the sessions meant for us were tear jerky sounding ones by parent bloggers, mostly crammed into the lunch hour. I just did not care for this format at all. I didn’t attend any of the parent ones because I already know how I feel, and had left my kids in the care of a sitter so that I could learn more practical stuff. Maybe I’m being too unyielding, but I don’t want to hear a bunch of anecdotes that don’t add up to data. Having said that, there are probably some good reasons for why they set things up this way, but it did not resonate with me.

The last talk I chose to attend was called “Don’t Give Up! Effective Interventions for Middle and High School Students” by Laura Kenneally, Heather Kovacs-Schroeck, and Kerry Beetel. The abstract really spoke to me—it promised a discussion about behaviors that “may have effectively punished caregivers and providers from addressing them.” RIGHT?? Some of the issues we face with A are intolerable even to talk about. I do not even know how we are getting through some evenings, to be honest. And he has created such fear-based, powerful barriers to intervention that we are not able to think of ways to solve them that wouldn’t ruin our home life or leave us feeling like heartless disciplinarians. Not only do the behaviors limit the child and the family’s ability to be part of the community, they can also become the reason the adult child does not succeed in employment and residential settings. Basically, I really needed to hear this talk, and decided that my husband needed to as well, so I signed us both up for it, and this was the one session we attended jointly all day.

The speakers began by saying that they were not going to be handing out any PowerPoint copies until the end, which I found rather confounding because people like me don’t always know the ABA jargon, so it’s hard to follow along. Sure enough, I had to look almost every single one of the terms up later, and hey, I learned lots, but I still found it a rough haul while they were speaking. And because the jargon went by me, all I gleaned from the talk in the moment was that certain unspecified techniques worked on their most challenging students, and then we watched some videos of a few students after they had improved, and that left me wondering, “But WHAT did you do to make that happen?”

The autism program they spoke about operates at Southern Regional High School, and is designed to be as simple as possible so that it is more likely to be implemented, and there is a greater likelihood of positive behavior change. It is also designed to transfer to parents in the home setting, or even be self administered, with the goal of reducing disruptive behavior, and to help the students generalize skills.

The basics about the program are that it is run in a public school, and is a community based program for students aged 12 through 21. There are many field trips, and they also work on vocational and life skills using a cafe and a gardening project. Each student has a one-to-one staff member who is rotated daily, and the staff are trained to provide behavioral interventions. The speakers made special mention of the supportive school administration, without whom they could not run such a specialized program so successfully.

Techniques employed are all evidence based, and include shaping (rewarding the gradual steps that lead to the desired outcome—sounds a lot like daily parenting!), incidental teaching (creating a motivating environment that allows the student to initiate the activity), Discrete Trial Training (classic ABA-at-a-desk stuff), extinction (removing our inadvertent response to the problem behavior, so that the student doesn’t act up just to get negative attention), naturalistic intervention (instruction during naturally occurring events such as grocery shopping), parent, peer, and sibling training programs, modeling, reinforcement, technology aided instruction, DRA, DRI and DRO (differential reinforcement of alternative, incompatible and other behavior respectively, and response interruption (often used to address stereotypy; though I should add that A comes home and satisfies this instinct by retreating to his bedroom and creating rituals there, which, according to his home therapists, is sensible to allow within reason).

The speakers ended by elaborating a little on their philosophical approach. They recommended a book by Aubrey Daniels called “Other People’s Habits,” and said that, while we have all these high expectations of autistic students, we must also be self aware and realize how most of us adults are not that motivated to change our habits either, so when we set goals to reshape self defeating behaviors in our kids related to toileting, talking, feeding, disruption, and learning new skills, we have to be willing to change our responses too.

They talked about how it is not motivating to go to work knowing that a student with challenging behaviors is likely to injure you, so the people who run this program aim always to preempt aggression, or, if a preventive strategy fails, to cut off the disruption at low levels. I respect that view, and just want to add that it is far more bleak to live with aggressive, injurious, and repetitive behaviors in our homes, so please put transferring these skills to us parents as a topmost priority. I am sure I am not the only parent who grows weary of being told that they do not see x or y behaviors at school (yay?) so it must be something we are doing or not doing at home (gee, thanks for that!).

A specific mention was made about using these strategies to finish toilet training, and this is something that can find common cause with all of us—independence in toileting greatly reduces the chances of our kids being abused.

One of the speakers caused a bit of a stir when he said that stimming is not a sign of happiness or innate calm, and that reducing it should absolutely be a goal. After the talk ended, we went up to one of them and asked if this was a general belief in how they run their program. The woman we spoke to admitted that it was not a universally held opinion, and that the usual debates about stimming is natural vs stimming should be tackled and reduced are a feature of their curriculum talks as well. But she too was adamant with us that we need to get on the bandwagon if we want to see progress, and that since we are looking at some seriously self defeating, disruptive and self injurious behaviors, we need to find a way to make peace with not being so delicate about stimming. It was thought provoking and also made me sad.

I took that melancholy home with me, to be honest, and have been mulling over it, which is inevitable as A gets older. We have to make some big picture changes and shift our philosophy with some actual planning, and not just react to what is in front of us.

So ends my write up about this conference. Thank you once again to Autism New Jersey. You guys always make me think, and I feel very fortunate to have these opportunities to absorb and reflect. Thank you also to S for babysitting so that we could both get away, and to my best peeps R and A, whom I missed, and for whom every effort to better ourselves is worthwhile.

Radha.