The Asperger's Express Reviews:

The NY Guidelines for Autism/PDD

A thump on the head...to the New York State Department of Health Early Intervention Program for sponsoring the document whose cover appears at left. While we admire New York for attempting to provide guidelines for assessment and intervention (New Jersey has no such document), we take exception to much of its content. Instead of simply listing the assessment and intervention methods currently being used for autistic children, thereby creating a reference manual, New York has published a statement of its opinions of those methods.

While New York makes an attempt to note which of its positions are based on fact and which are opinions of the authors, the distinction remains unclear. Each position statement is tagged with a letter (A through D1or D2). A key describing the meaning of the letter tags appears at the beginning of each section in the report. Perhaps the authors were simply attempting to shorten the document, but the effect of the lettering system is such that by the time the reader finishes the section, he or she has forgotten whether this is "A" information or "D2" information, just as a magazine reader might be unable to recall the location of the surgeon general's warning in a cigarette ad.

In Chapter 3 of New York's guidelines, the authors comment on the need for a developmental assessment of the child. We have no problem agreeing with them since such as assessment is necessary to document the child's present levels of performance. We take exception, however, to New York's treatment of the term "cognitive ability." According to the authors of the New York guidelines,

It is important to assess cognitive ability in children with possible autism because:

information about the child's cognitive ability is useful in the diagnostic process, specifically in differentiating children with autism alone, children with mental retardation alone, and children who have both autism and mental retardation

the child's cognitive ability has implications for intervention decisions and has possible implications for outcome [D2]

When Katie was evaluated by the county preschool disabled program, she was given a general cognitive index of 106. At the time, she could not answer questions and had very little self-generated speech. She had a very hard time understanding verbal instructions and so would often fail to complete the tasks put before her. The assumption that Katie's cognitive ability could be reliably assessed at the time of her evaluation was, in our opinion, absurd. To allow a snapshot of a child's performance, in an unnatural setting and by strangers, to have "implications for intervention decisions" is equally absurd.

To their credit, the authors of the New York guidelines recognize the difficulties associated with determining cognitive ability. In the paragraph below, we notice that the New York guideline uses the term cognitive level rather than ability.

It is important to recognize that it is often difficult for professionals to accurately assess the cognitive level of a child with autism. Children with autism often:

display uneven levels of skills between different developmental domains

have limited language

participate in a very limited way in the assessment process [D2]

"Effective" Intervention?

In making their recommendations for effective intervention programs, the authors of the New York guidelines refer to a 1997 review of eight different programs by Dawson and Osterling. According to Dawson and Osterling, although there was considerable variation among the eight programs, certain elements were common to all.

Curriculum content. The curricula of the programs emphasize five basic skill domains, including the following abilities: 1) to attend to elements of the environment that are essential for learning, especially to social stimuli; 2) to imitate others; 3) to comprehend and use language; 4) to play appropriately with toys; and 5) to interact socially with others.

Highly supportive teaching environments and generalization strategies. The programs first try to establish core skills in highly structured environments and then work to generalize these skills to more complex, natural environments.

Predictability and routine. Since the behavior of children with autism is easily disrupted by changes in environment and routine, the programs adopt strategies to assist the child with transitions from one activity to another.

Functional approach to problem behaviors. Since young children with autism often show problem behaviors, the programs first try to prevent the development of these behaviors by structuring the environment. If problem behaviors persist, the programs use a functional approach that involves the following steps: 1) recording the behavior; 2) developing a hypothesis about the function that behavior serves for the child; 3) changing the environment to support appropriate behavior which allows the child to cope effectively with the situation; and 4) teaching appropriate behaviors to replace problem behaviors.

Plans for transition from preschool classroom. The programs teach "survival" skills that children will need later on in order to function independently in preschool or school classrooms.

Family involvement. The programs include parents as a critical component in the intervention for young children with autism. Family involvement is an important factor for success of a program because parents can provide unique insight into creating an intervention plan and can provide additional hours of intervention. Including parents in the intervention can also help children achieve greater maintenance and generalization of skills and can help reduce parents' stress levels.

Relying on the findings of Dawson and Osterling, the New York guidelines make the following recommendation,

It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as an important element of any intervention program for young children with autism. [A]

It appears to us that both Dawson and Osterling and the State of New York believe that the behavioral approach to intervention is the only approach, an idea which conflicts with our beliefs. Perhaps the problem lies in the use of the term "effective." Are behavioral approaches effective? Sure they are, but what is the effect? We believe that an intervention program structured around Applied Behavior Analysis would be highly effective in producing a quiet, compliant child who is perhaps less troublesome at home and in the classroom. The trouble is, we don't think the approach does anything to address the underlying condition which led to the problem behaviors in the first place. We're not interested in making our child look normal and comply with commands. We prefer to aim a little higher.

The NY Guidelines View of DIR

Not surprisingly, the New York Guidelines come down rather hard on the DIR Model. Although the authors are perceptive enough to consider his methods a general intervention method rather than a specific therapy, they list it, along with Sensory Integration, under "Other Experiential Approaches" and are quick to debunk it.

The description of Greenspan's intervention method is innocent enough.

The Developmental, Individual Difference, Relationship (DIR) model, which has been developed by Greenspan (Greenspan and Wieder, 1997) , is used as the basis for a comprehensive intervention approach emphasizing the child’s: (1) affect and relationships, (2) developmental level, and (3) individual differences (in motor, sensory, affective, cognitive, and language functioning). Intervention approaches using the DIR model are based on the theory that symptoms of a child with autism may be related to underlying biologically based processing difficulties which cause the child to have problems with relationships and affective interactions.

The intervention strategy based on the DIR model is sometimes informally referred to as "floor time" because the approach may include a component that encourages the therapist and parent to spend a great deal of time on the floor interacting with the child. At home, parents are asked to spend from six to ten daily sessions lasting 20-30 minutes working on the child’s ability for affective-based interactions using the child’s individual differences and developmental level as a starting point. Parents receive training and feedback on working with their child. Greenspan states that, "The floor time model mobilizes the child’s emerging developmental capacities, and is based on the thesis that affective interaction can harness cognitive and emotional growth." (Greenspan and Wieder, 1997). Depending upon the child’s needs, the child may also receive other interventions, including behavioral and educational approaches.

Proponents of the DIR model consider it to be a conceptual framework that incorporates a variety of approaches tailored to the child's developmental level rather than a single, specific intervention method. In the panel’s opinion, some aspects of the DIR model may be consistent with the common elements of interventions that have been shown to be effective for children with autism in other programs and studies. The panel concluded that the DIR model forms the basis for some interventions currently being used for young children with autism and, therefore, the panel chose to evaluate the DIR model as a general intervention method.

Unfortunately, the panel remained suspicious. Perhaps they were worried when they didn't see the familiar emphasis on target behaviors, skill building and the equally familiar "goal," which is to make the child "indistinguishable from his peers."

The panel's recommendation reads as follows,

It is important to recognize that there is no research evidence that intervention approaches based on the Developmental, Individual Difference, (DIR) model are effective as intervention for young children with autism. However, some aspects of the DIR model may be consistent with desirable elements commonly used in other intervention approaches, such as

the importance of child-specific assessment
individualizing the intervention to the child's strengths and needs
involving the family in the intervention [D1]

Without evidence from controlled studies using generally accepted scientific methodology that demonstrates effectiveness, interventions based on the DIR model cannot be recommended as primary interventions for young children with autism. [D1]
It is important to recognize that approaches based on the DIR model can be time-intensive for both professionals and parents and may take time away from other therapies that have been demonstrated to be effective. [D1]

The Asperger's Express finds it interesting that the NY Guidelines chose to mention that there were no "controlled studies using generally accepted scientific methodology" to support the use of DIR. We would argue that ABA suffers from the very same lack of meaningful research. In Part 8 of the ICDL Clinical Practice Guidelines, Elizabeth Tsakiris examines the value of the available research conducted to date on behalf of a wide range of therapeutic interventions, including ABA. She writes as follows.

"Intervention for surface behaviors (i.e. behavioral approaches) involves a large number of studies, but many of them involve multiple baseline designs with small numbers and with no control groups. None of them, including Lovaas's longitudinal study (1987), sufficiently assesses the outcomes most relevant to autism (i.e. abstract thinking, the capacity for empathy and theory of mind, and the ability for affective reciprocity and relating with trust and intimacy). In addition, the major behavioral studies, including the Lovaas study, did not use a clinical trial methodology (i.e. random assignment), leaving the support for this area relatively weak.

"Of the 71 studies reviewed, 76% were individual case studies or used groups that had less than 5 subjects. Random assignment to treatment groups, or even choosing a random sample, was not a part of these studies. If traditional research standards are used for reviewing these studies, these factors and the use of such small groups ultimately reduce their validity.

"Contrary to the conclusion of the New York State Health Department, ABA discrete trial and behavioral methodologies do not have definitive scientific support and, in fact, face the same methodological challenges and weaknesses seen in the other functional deficit areas."

Elizabeth Tsakiris, M.Ed., M.A., Evaluating Effective Interventions for Children with Autism and Related Disorders: Widening the View and Changing the Perspective, ICDL Clinical Practice Guidelines, Part Eight, Chapter 31, p. 760-763

Dr. Bernard Rimland, Ph.D, founder of the Autism Research Institute and a supporter of ABA, published an article in 1999 that criticizes New York's guidelines far more vehemently than we do here. In his article The ABA Controversy, Rimland writes

"I must tell you that I am dismayed and appalled at the ludicrous position taking by many other supporters of ABA, who claim that ABA is the only scientifically validated treatment for autism. Not so! That position is not only false, it is absurd. Believe it or not, the Early Intervention Program of the New York State Department of Health has published a series of Clinical Practice Guidelines which makes that claim...

"The 'ABA is the only way' folks are wrong, not only because of their lack of information about research on the validity of other interventions, but because of their failure to recognize that parents have a right and an obligation to consider all possible forms of intervention, including those which may not yet have won the stamp of approval of whatever person or committee feels qualified to pass judgment on candidate interventions."

Bernard Rimland, Ph.D
The ABA Controversy
The Autism Research Institute
San Diego, California

We freely admit to being some of the most biased people on earth when it comes to autism and the types of therapy autistic children should receive. Although we have often bashed New Jersey for having no set of guidelines regarding autism, reading New York's paper forces us to conclude that we are better off here. We believe that New York parents who wish to use the DIR model, or any intervention other than ABA, will have a very hard time with their school districts now that their child study teams can hide behind a publication, even if it is targeted at the zero to three population.

The Clinical Practice Guidelines for Autism/PDD published by the NY Department of Health (all 322 pages!) can be viewed by clicking here.

Back to Special Education