Tuesday, December 14, 2010

How to Address Autism From a Natural-Environments Perspective: Talking to Parents

I address this thorny issue by showing you an adapted version (for confidentiality reasons) of some correspondence I had with a mother of a 3-year-old who was about to be diagnosed with autism. The parents were already thinking about what services might be appropriate for their child. It’s unfortunate that the way we provide early intervention and early childhood special education emphasizes type and amount of service rather than type and amount of support or intervention.

The mother described her child, whom I knew somewhat, as having challenging behaviors, poor expressive language—even gestural, self-stimulation, mild but extremely pervasive self-injurious behavior, apparent lack of pain sensation, poor direction following, rigidity, and failure to play with toys as intended. To me, behaviors related to engagement, independence, and social relationships are more important than the diagnosis. She had requested 10 hours a week of applied behavior analysis: “I want him to be able to get the services/help that will benefit him the most. I am afraid if he doesn’t start getting services [there it is again] it will be harder for him in the future.”

MY RESPONSE

In my opinion, 10 hours of traditional ABA would not be enough to address the problems you’ve described. He probably needs more hours of contingent learning (what ABA tries to do), spread out through the day, in the contexts where he needs to learn skills and behaviors. Discrete-trials training, which is what traditional ABA is, tends to be decontextualized and to have poor generalization to meaningful routines. But the principles of ABA (systematic reinforcement of desired behavior, stimulus control, data-based instruction) would probably be helpful for Kenny, regardless of diagnosis. He’s still a little kid, so applying methods for older children are at best inappropriate and ineffective and at worst robbing him of his childhood. But your description makes it clear he needs to be taught to play and function as a kid. If you think the autism diagnosis/label (only MDs and licensed psychologists can diagnose) would help Kenny get appropriate services, I can see why you’re anxious to explore that. I, however, wonder whether that’s true. It’s not services that make a difference, it’s intervention. Do you see the distinction I’m making? You probably want to specify the most effective interventions for him and then see what services can provide them, but note that parents don’t have the right to mandate methods (interventions) in the IEP world, whereas they can advocate for services. So my suggestion is to base your decision about what services you go after on the types of interventions they would apply. The law pretty much forces us to think backwards.

I have a picture of Kenny’s spending at least his school day and possibly much of his home time, if it’s not too disruptive to family life, where (a) there is a at least one clear goal for what he is being taught in each routine (i.e., activity or time of day); (b)where those goals increase his participation, engagement, independence, communication, or getting along with others; (c)where the rate of systematic incidental teaching is high; and (d) where one or two goals are addressed through precision teaching in context. This is doable but requires the team to be smart, organized, and creative and always respectful of Kenny’s developmental age and interests of his parents’ priorities.

Do you see then what I mean about the 10 hours of ABA not being enough? I have seen it used to teach discrete trials out of context; the child doesn’t learn to generalize the skills to nonteaching times; and the other adults in the child’s life can’t use the same techniques for a host of reasons. The child then displays great “gains” in highly particularized areas—those the discrete-trials training addressed (e.g., sorting colored objects into correct little trays), suggesting the method is highly effective. Meanwhile, the child’s engagement, independence, and social relationships might not have improved or even have deteriorated. So it all depends on how applied behavioral analysis is used. (Full disclosure: I am a behaviorist, with a degree from one of the most behavioral master’s programs in existence, and a teacher of board-certified behavior analysts.)

Forgive me for sounding as though I really know Kenny and his specific needs. I’m speaking on the basis of your description of him, what you say you want for him, and what I have seen with hundreds of other children with similar characteristics, whether they have the autism diagnosis or not.

The mother then asked me what specific interventions to request at the IEP meeting.

WHAT TO WORK ON

I received your message about specific interventions to request at the IEP meeting. To elaborate on what I said about more than the 10 hours a week of traditional ABA, it seems that Kenny needs to be working on engagement (this is a big issue in autistic-like behaviors and it is what a child should be doing instead of self-hitting or -biting), independence, and social relationships. Social relationships consist of communicating and getting along with others. I don’t know the specific goals Kenny might have but they should generally fall into these categories, because these categories are pretty much what is functional for young children, especially those with disabilities. Furthermore, they apply regardless of disability. I would say that they apply for Kenny. You all and the IEP team might need to get at the specifics. So that’s the deal about what to work on. Now let’s talk about when to work on them.

WHEN TO WORK ON GOALS

I don’t know Kenny’s classroom schedule but they are using the zone defense schedule, which tells me the day is broken into 15-minute increments, except possibly for nap time. So let’s assume Kenny is in the room for 3 hours before nap (i.e., 9-12) and 3 hours after nap (i.e., 2-5). That’s 24 fifteen-minute intervals or activities. In each of those, we should aim for about 4 incidental-teaching contacts and for a minimum of 5 minutes engagement. The 4 comes from research Amy Casey and I have done showing this is a feasible rate. The 5 minutes of engagement is equal to 33% of the time, which is low, according to numerous studies of ours, but might be ambitious for Kenny right now. Incidental teaching is a form of ABA in which an adult addresses engagement, independence, or social relationships—including specific goals on Kenny’s IEP—by getting him engaged, responding to his interest, eliciting more sophisticated behavior, and ensuring it was reinforcing. Engagement time can range from low-level engagement, such as doing things repetitively (but not perseveratively or “stimming”), up to high-level engagement, such as solving problems, communicating with language, or making something. Now let’s multiply: 4 incidental-teaching contacts x 24 activities or “routines” = 86 learning opportunities. In incidental teaching you count learning opportunities rather than trials, which is what you count in discrete-trial training or traditional ABA. A learning opportunity can involve one or more discrete trials, but they are in context, making each one more salient than a decontextualized “trial.” Multiplying engagement amounts, we would have 5 minutes x 24 routines = 120 minutes or 2 hours a day. Multiply this by 5 days and we have the same number of hours as 10 hours of ABA a week, but the engagement time is (a) in playful contexts—and Kenny’s still a little kid, (b) delivered by Kenny’s familiar caregivers (i.e., teachers), and (c) spent learning meaningful skills.

SERVICES AND PLACEMENT

Therefore, if I were you (I’d be exhausted), I would request continued classroom services at his current program, with systematic incidental teaching being used in each routine to address engagement, independence, and social relationships. That means that, before you talk about services, you need to make sure you have good functional goals that get at these areas of development. I believe you’ve completed the MEISR, which should help with goals. As for therapies, the best value they provide is guiding the teachers and you all (i.e., Kenny’s regular caregivers) about how to elicit the desired behaviors during incidental teaching. The OT would have ideas about how to elicit his self-help and maybe some fine motor skills. The SLP would have ideas about how to elicit his communication. But ultimately we need the teaching staff and you to own those intervention ideas so you can use them 24/7 so to speak. Therefore, you might not need a high intensity of these services. After all, how much information do the teaching staff and you all need, week in and week out. You don’t want the therapists working with Kenny directly, even though everyone says parents should try to get the most therapy possible; you want them working with the teachers, so Kenny gets even more intervention than he would if the therapists worked directly with Kenny. At the IEP meeting, the most you can really talk about is the frequency and intensity of different services, not the approach used: That’s beyond the purview of parents’ rights.

I hope this gives you something to go on. I’ve tried to give you as much information as possible while leaving room for you to determine the specific goals. You’ll notice that this approach involves individualizing intervention for Kenny, meeting him where he is, with his strengths and needs in specific routines, rather than thinking of him in terms of a specific disability or conglomeration of disabilities. I also want you to know that I’m not pushing his existing program over other settings, although I would “push” a normalized, developmentally appropriate setting over a clinical, decontextualized setting. It just so happens that his existing program provides the former.

The parents liked this approach: After all, they want the best help for Kenny, which does involve lots of intervention. It’s just that that intervention needs to be distributed throughout the day and has to be meaningful. We are going to document how many incidental-teaching episodes occur per routine and how many minutes of engagement per routine he has.

No comments: