Undoing early intervention?
My name is Christopher Mulligan LCSW. I facilitate socialization groups in Los Angeles for teens, and young adults on the autism spectrum. Over the past 16 years I have conducted 662 evaluations for admission into my socialization groups. My evaluation process involves a 1 1/2 hour interview with the prospective group member and his or her parents/caregivers. During the evaluation process I take a detailed history of previous autism focused interventions (as well as full medical history, school history, family of origin history, and developmental history).
To be clear, the families I have evaluated for my group program already carried a diagnosis of autism, Asperger’s, or PDD. The source of the diagnosis varied: pediatricians, psychiatrists, neuro-psychologist, school psychologist, and evaluators at different Regional Centers. After a review of my files conducted over the past 60 days, I learned 93% of the families I have evaluated participated in some form of intensive early intervention.
The most common early intervention program consisted of seven parts: 1) home based behavior intervention, typically following the ABA method established by the UCLA Young Autism Project; 2) clinic-based speech and language intervention; 3) clinic-based occupational therapy, including sensory integration therapy; 4) school-based speech and language therapy; 5) school-based occupational therapy; 6) community-based recreation therapy (i.e., gymnastics, swimming, theater and equine therapy), and; 7) one-to-one school-based behavior intervention, provided by classroom aid, typically trained by a nonpublic agency using concepts and methods from applied behavioral analysis.
I currently focus on teens and young adults in my socialization groups, ranging in age from 13 to 25. I personally facilitate six groups per week and work with a total of 46 clients. In addition to facilitating groups, I also meet on a monthly basis with parents and caregivers to provide feedback about group progress and to provide guidance for enhancing socialization/relationship development with in the home, school, and broader social community.
Since I began facilitating groups I have consistently heard from parents, school psychologists, community mental health professionals, developmental pediatricians, and educators that behavior intervention, specifically the ABA or Lovaas method developed at UCLA, is an evidence-based or empirically verified treatment model that is critical to decreasing symptoms of autism, including the possibility of “recovery.”
The vast majority of parents I have worked with believe early intervention was/is effective for their child, but they are also uncertain about what intervention produced change. Parents are typically clear significant progress was made during the period in which they had multiple intervention programs running simultaneously (the period of intensive intervention lasted anywhere from two years to nine years).
The research on the applied behavioral analysis program developed and implemented through UCLA involved young children, between the ages of three and five, who received 1 to 1 instruction, 5 to 8 hours per day, 5 to 7 days per week, for a total of 35 to 40 hours per week, without other interventions occurring simultaneously. Clearly, for any intervention to be established as effective in its own right, it must be studied in isolation from other interventions.
As the significant majority of parents I have worked with did not use ABA alone, but rather followed a multimodal model that included speech and language intervention, occupational therapy behavior intervention, one-to-one aid during the school day, and various forms of recreation focused therapy, there is simply no way of determining why early intervention resulted progress (defined by multiple variables: self-control, daily living skills, safety skills, vocabulary, academic performance, play skills).
To make matters more complicated and confusing in interpreting the benefits of early intervention is the fact that there was no clear consensus in defining what autism is and is not by parents. Due to the focus on multimodal intervention, the vast majority of parents I have worked with view autism as a puzzling combination of deficits in behavior management, academic performance, socialization, communication, and sensory integration. They do not have a “theory” of autism or any organizing framework for understanding their child/teens challenges.
Although the majority of parents have told me they believe early intervention was helpful (however it was configured and implemented), they are equally clear the progress occurred during preschool and elementary and are overwhelmingly dissatisfied and concerned about how their teens are functioning within a high school environment --.especially teens who are in mainstream settings
Certainly, the sad conclusion of my clinical experience with teens and young adults that underwent years of intensive, multimodal treatment, is they have profound problems in high school with creating, enhancing, and maintaining social relationships with peers, particularly peers of the opposite gender. The years and years of home based behavior modification, speech and language intervention focusing on vocabulary production, and school-based behavior intervention I believe has produced scores of teenagers that are uniquely ill-equipped to deal with the complexities of adolescent social relationships.
What is most notable about the teens that had intensive early intervention is they approach human relationships as if human relationships can be reduced to or simplified to right and wrong choices and scripted behaviors. Unfortunately, the significant majority of teens (and young adults) I have worked approach human relationships as they would a simple mathematical problem, searching for static and rote answers.
When in “mainstream” settings, these teens scan dynamic, unpredictable, and improvised behaviors in search of static patterns, hoping to match a correct response to a statement, question, commentary, joke, and/or non-verbal communication. As there are no defined or reliable patterns when social behavior becomes increasingly based on improvisation and embedded in context during high school, the early intervention trained teens do not feel competent when engaged in socialization. Additionally, when they apply rote and scripted social problem solving methods they learned via ABA or speech and language intervention, they alienate and confuse typical peers.
In order for behavior modification to be successful -- which means for behavior modification to increase or decrease a specific behavior -- the targeted behavior has to be simple enough to measure. If I am going to introduce a reinforcer, I need to be able to measure the targeted behavior quantitatively. So, for example, if I want to “increase socially appropriate introductions,” I would need to offer a reinforcer (sticker or token) for saying “Hello, how are you today” during every introduction.
The result of this training process is a teen that “always” says “Hello, how are you?” at the point of introduction – even when a greeting is not a socially appropriate. And herein is the problem with applied behavioral analysis/behavior modification for teenagers. If they are put in a situation in which there are multiple correct responses, or situations in which there are no correct responses because the correct response is contingent on context, they have no experience or practice in handling these situations. The common response is freeze or become robotic and scripted. They only know how to focus on behaviors that are sufficiently static to be reinforced and clearly measured -- which leaves them phobic and avoidant of dynamic social interactions.
Although there are many social behaviors children and teens need to master that are static and measurable, such as how to behave in accordance with birthday protocols, how to safely cross a street, or how to play a board game, the relevance and importance of the static behaviors decreases as the child moves through elementary school, into middle school, and finally into high school. The constant focus on developing a right/correct/accurate responses leads to a fear of rapid change, elaborations, discoveries, and improvisation – all key characteristics of adolescent social interaction.
Based on my 14 years of evaluations and intervention with teens and young adults with autism, I see the following as the negative consequences of intensive early intervention:
1) A reliance on static thinking and rote/scripted problem solving (scanning for a “right” response or answer).
2) A search for invariant-static patterns and “right” answers when engaged in dynamic/fuzzy/grey area situations.
3) Confusion between subjective states and personal opinions and objective statements and facts (e.g., “I feel really bored when I watch a Harry Potter movie” is treated as “I think 2 plus 2 is 5”).
4) A reliance on instrumental communication (using communication to achieve a non-personal goal or fulfill a rule such as politely requesting an object or obtaining permission to leave a room).
5) The use of memorized phrases, scripts, and responses in situations that are inherently dynamic (open ended, unscripted, and improvised).
6) A narrow range of interest that is typically dominated by the desire to obtain static information, manipulate objects, and identify fixed patterns.
7) Excessive time spent acquiring objects (trains), facts (the number of locomotives made in 1912), and information that is static and follows stable patterns.
8) Intolerance of “outside the box” ideas or opinions.
9) Intolerance of uncertainty, whether it be cognitive, emotional, or social.
10) Controlling behaviors characterized by lecturers, monologues, and criticism of differences in opinion and/or approaches to problem solving.
11) An inability to understand the meaning of information carried over nonverbal “channels.”
12) An inability to use both verbal and nonverbal feedback in real time to make adjustments in social behavior.
13) An inability to use emotions to understand the motives, choices, and preferences of peers.
14) A lack of emotional awareness and accurate self-assessment
15) Deficits conflict management, teamwork and collaboration.
16) A dependence on solitary recreational activities, particularly the use of computer database searches and video gaming.
In addition to these very unfortunate consequences of early intervention, we can also add early intervention is extraordinarily expensive, as the cost of ABA alone is $60,000 a year or more for a single child. Last year California's Department of Developmental Services spent $187 million on behavior therapy alone for autism. Additionally, the early intervention model followed by the clients I have interviewed and worked with was time-consuming, and as a result of the time commitment, deprived both families and children of typical quality of life enhancing experiences.
The families who engaged in early intervention over multiple years simply did not have the time, energy, nor in many cases the economic resources, to enjoy life separate and apart from autism therapy. Tragically, the majority of families I have worked cannot remember ever engaging in an activity unless the activity was “approved” for “decreasing the symptoms of autism.” Thus, any activity that did not have a plan and a scripted ending was dropped as an option: riding bikes around the neighborhood, digging a hole, baking cookies, drawing, water balloon fights, laying in a hammock, playing charades, etc.
Finally, what is even more problematic about the early intervention model is it can only be administered to one child at a time and has precluded research into new approaches to working with autistic spectrum children, teens and young adults. Due to the fact that ABA is considered “evidenced based” or “best practice,” parents are fearful of trying an alternative model or participating in studies focusing on alternatives to ABA. Parents get the message from the moment they receive an autism diagnosis that it would be irresponsible not to engage in as many hours of intervention as they can acquire (which itself becomes a full time job for many parents).
One of the benefits of group work with children, teens, young adults on the autism spectrum is it is cost-effective. Within a group framework, 6 to 8 members can participate, thus distributing cost and increasing the total number of participants who can benefit from intervention. What makes group challenging, is the obstacles created through the years and years of early intervention.
When parents call my office and ask what I do we do in group, more and more I respond the focus is to reverse the damage of early intervention -- and in particular variants of behavior modification/applied behavioral analysis. The problems described above are obviously in play during every group session and thus take up a significant amount of our focus and attention.
When parents ask “How long does it take for your group to produce results,” I respond “It depends on the child/teen.” That is, it depends on the unique strengths and challenges that children and teens bring to group intervention. With this said, it takes on average between two and three years to create meaningful change. Within our group program, to reiterate, I believe a significant amount at our time and attention is devoted to reversing the habits, patterns, and belief system created by early intervention.
So, what then do we do to reverse the negative consequences of early intervention? In large measure it is what we do not do that matters the most:
1) We never prompt for a “correct” verbal responses because our groups are fluid, open ended, and improvised. We try to run each group so that flexibility is a source of pleasure. Sometimes groups are tough sledding because everyone wants to be right or be told exactly what to do – and how to do it, when to do it, etc.
2) As would follow, we do not frame social problem-solving as a search for a correct response. Rather than continue to reinforce the idea that social problem-solving is fundamentally about finding the correct answer, we frame problem-solving as a process of choosing from multiple options, many which are equally “good” or equally “bad.”
3) We emphasize the concept of “good enough” solutions as compared to “just right” solutions.
4) We attempt to decrease the overall production of verbal communication, which is accomplished by decreasing prompting and the demand for closed ended responses. More than any other objective, we want to encourage mindful or thoughtful communication, or quality over quantity.
5) We also attempt to increase mindful verbal responses by discouraging monologues, one-way communication, and the display of “inch wide, mile deep” knowledge. In other words, when a teen is about to enter into a rant, monologue, lecture, or language loop, we set a simple but firm limits, which communicates “think, think, think …before words.”
6) We emphasize what is referred to as “experience sharing communication” – that is, communication that focuses on the expression of subjectivity, of feelings, preferences, and hypotheses. In experience sharing communication the intention is not to discover or provide a correct response or answer, but rather to convey meaning and build a bridge of understanding to another human being.
7) We engage in a process oriented activities. We emphasize the “journey” rather than the “result” of the group activity. What we care about is that the group process is a source of pleasure and satisfaction, not because we played a certain game or used certain objects. The group needs to be valued because the relationships in the groups are important.
8) We prioritize relationships over entertainment and create a group culture in which the relationships in the group take priority.
9) We allow uncertainty and confusion to unfold during group and do not rush to provide answers or scaffolding. The vast majority of the teens and young adults we work with are truly phobic of uncertainty and anticipate adults will provide structure and instruction to remove uncertainty.
10) We encourage outside the box thinking. We have conversations where we engage in thinking about different ways to approach problems that include innovation, improvisation and hypothesis creation. Often we acknowledge that there isn’t a right answer and thus we have to learn to muddle along.
11) We emphasize nonverbal communication. The teens and young adults we work with depend on verbal communication or written communication, and thus are at a disadvantage in peer-based communication that uses multiple forms of nonverbal communication to impart meaning.
12) We strongly discourage dependence on computers and video gaming for recreation. The autistic mind is particularly ill suited to take advantage of technology. The potential to engage in endless loops of static research and information only enhances the vulnerability of the autistic mind to think in static patterns.
13) We strongly encourage the expansion of recreational interests. We consistently emphasize the importance of adding “flavor and color” to one's social/recreational life. This necessarily involves the decrease of dependence on technology.
14) We create an “object free” environment in order to decrease obstacles to joint attention. An office that is filled with objects of interest is an office that pulls attention away from the relationships in group. Our office is therefore simple, clean, lacking in toys, games, books, Lego, planes, trains, and, of course, technology.