.
Prevention, Early
Intervention, and Cure as Major Goals of Research in Autism
One of the major goals
of research in autism during recent years has been to identify
the cause or causes of autism that might lead to comprehensive
programs for the prevention, earlier intervention, or cure of autism
that could be implemented within the near future. This goal is
strongly supported by parents and parent advocacy groups nationwide.
Lee Grossman, President of the Autism Society of America (ASA)
and Robert Beck, Executive Director, recently stated (2002), “After
more than 50 years of study, no causes have been identified. There
needs to be a geometric increase in research funding . . . to determine
the causes of autism” (p. 7).
As a result of pressure
by parent groups such as ASA and others to increase funding for
autism research, the National Institute of Mental Health in 2002
and 2003 began funding a five-year $65 million dollar project designating
eight university centers to focus on cutting-edge research in autism
(National Institute of Mental Health, 2004). These centers include
the University of North Carolina, Chapel Hill, Yale University,
University of Washington, University of California, Los Angeles,
Mount Sinai Medical School, Kennedy Krieger Institute, Baltimore,
Boston University, and University of Rochester, New York. In addition
to the eight university programs, there are at least three organizations
dedicated to funding biomedical research to determine the cause
or cure of autism. These are Cure Autism Now (CAN), Defeat Autism
Now! (DAN!), and Autism Research Institute. Although some non-biological
studies are being funded by the NIH grants, the majority of this
new research is being conducted in biomedical fields such as genetics,
neurology, and pharmaceutical research.
ABA and The Prevention
and Treatment of Autism
Applied Behavior Analysis
is now recognized nationwide by many professionals and parents
as the most effective form of treatment for autism (Lovaas, 1987;,
Smith, & Lovaas, 1993; Maurice, Green, & Luce, 1996). However,
Behavior Analysis as a profession has had relatively limited involvement
in or impact on the national movement for the prevention of autism.
Most individual behavior analysts and ABA programs have limited
their intervention efforts primarily to children with an established
diagnosis of autism. The prevention initiative is, at present,
largely dominated by the biomedical professions.
In view of the remarkable
success that ABA has had in the environmental/behavioral approach
to the treatment of autism, it is reasonable to ask why behavior
analysis as a profession has not had greater involvement in prevention/earlier
intervention research in autism. There are at least two factors
that may have contributed to this relative lack of involvement.
First, many, if not most, behavior analysts appear to have tacitly
accepted the neurobiological model regarding the etiology of autism.
That model states that autism is primarily a genetic or neurological
disorder (Dykens & Volkmar, 1997, p. 388). As such, it would
be relatively if not completely unresponsive to behavioral efforts
to prevent the disorder. Behavioral researchers who view autism
as a neurological disorder would, therefore, have little incentive
to engage in prevention research. Moreover, as observed by Sundberg
(2004) there has been an almost complete lack of discussion and
research regarding the possible role of environmental, i. e. behavioral,
factors in the development of autism. This is, he concludes, largely
due to the parental backlash against the misguided views of Bettleheim
(1967).
A second factor that
may have contributed to the relative lack of involvement of behavior
analysts in prevention research is that until the publication of
our recent articles in The Analysis of Verbal Behavior (Drash & Tudor,
2004, 2004a), there has been no detailed analysis of environmental
factors that might explain how autism could be caused by specific
behavioral reinforcement contingencies rather than by genetic or
neurological factors. We believe that our analysis will facilitate
discussion and research that may lead to greater involvement of
behavior analysts in earlier intervention and prevention efforts.
If our analysis of autism as a contingency-shaped disorder of behavior
is correct, it should be possible to identify the reinforcement
contingencies that shape “autistic-like” behaviors
during the first year of a child’s life. These contingencies
could be replaced with contingencies that would shape age-appropriate
verbal and social behaviors, thus preventing the more severe symptoms
of autism from ever occurring. It appears that behavior analysts
are uniquely qualified by training and experience to make major
contributions to the development of programs for the prevention
of autism.
An Analysis of Behavioral
/ Environmental Factors as the Cause of Autism
In our recent publication
An Analysis of Autism as a Contingency-Shaped Disorder of Verbal
Behavior, (Drash & Tudor, 2004) we provided a behavioral analysis
of autism as a contingency-shaped disorder of verbal behavior.
Our analysis suggests that contingencies of reinforcement in effect
between caregiver and infant during the first to third year of
a child’s life may operate to establish and maintain those
behaviors that later result in a diagnosis of autism. We presented
a detailed analysis of six reinforcement paradigms that may play
critical etiological roles in the establishment of behaviors labeled
as autistic. These are:
1. Reinforcement for
aversive vocal manding such as screaming or crying or other disruptive
escape or avoidance behaviors that may be incompatible with acquiring
age-appropriate verbal and social behavior.
2. Reinforcement for
gestural manding and other nonvocal forms of manding.
3. Anticipating a child’s
needs and thus reinforcing a repertoire of nonresponding that prevents
both vocal and nonvocal mands.
4. Extinction of verbal
behavior.
5. Interaction between
organic or presumed organic factors and behavioral factors.
6. Non-suppression of
disruptive behaviors, and lack of verbal instructional control.
This analysis provides
a logical and testable behavioral answer to the question, “What
is the cause of autism ?” a question that has baffled researchers
and scientists for more that half a century. Recognition of these
contingencies and their resulting behaviors during the first year
to two years of a child’s life may contribute substantially
to earlier identification, more effective treatment, and quite
possibly to the development of Applied Behavior Analysis programs
for the prevention of autism that could be implemented in the near
future.
Earlier Identification
of Autism: When Can Behaviors that Correlate With a Later Diagnosis
of Autism First Be Recognized?
In order to begin prevention/intervention
efforts earlier, it will be necessary to identify behaviors that
are correlated with a later diagnosis of autism much earlier than
is presently the case. Until recently autism was rarely diagnosed
before 18 months to 2 years of age. By that age the “autistic-like” behaviors
are often well established and have become highly resistant to
modification. However, accumulating evidence suggests that behavioral
correlates of later autism can be recognized much earlier. Research
has shown that 50% of parents of children diagnosed as autistic
suspected a problem before their child was one year old (Ornitz,
Guthrie, & Farley, 1977). Barton-Cohen, Allen, and Gillberg
(1992) demonstrated that behaviors correlated with a later diagnosis
of autism may be accurately identified at 18 months. More recent
studies have identified behavioral correlates of later autism at
12 months (Osterling & Dawson, 1994) and at 8 to 10 months
(Werner, Dawson, Osterling, & Dino, 2000). Research currently
being conducted at the Kennedy Kreiger in Baltimore is investigating
the possibility of identification of behavioral correlates of autism
as early as six months (Landa, 2004). Similar work is also being
done at Yale University Medical School (Nickenig, 2003).
The fact that behaviors
correlated with a later diagnosis of autism can be detected as
early as 8 to 12 months suggests that the contingencies producing
language and social delays are in all likelihood operating during
the first year of life and quite possibly as early as 6 to 8 months
if not earlier. This suggests that by using these recently identified
markers, behavioral preventative intervention could quite possibly
begin during the first year of a child’s life.
A Practical Behavioral
Strategy for Prevention/Earlier Intervention in Autism that Can Be
Initiated Now
Based on the documented
success of ABA early intervention and treatment programs for children
with autism, it appears that Applied Behavior Analysis should be
in a position to take a leadership role in the development of effective
prevention and earlier intervention programs. For example, at least
one study has shown that ABA early intervention produced relatively
complete recovery in a 1-year-old toddler at high-risk for autism
after three years of therapy (Green, Brennan & Fein, 2002).
This case also illustrates the fact that ABA intervention techniques
and procedures remain essentially the same, with relatively few
modifications, regardless of the age of the child. This suggests
that it is likely that ABA intervention programs that begin even
earlier in the first year of a child’s life, that is, as
early as 6 to 8 months could be even more effective.
To have a significant
impact on the reduction of new cases of autism nationwide, that
is, on the incidence of autism, it will in all probability be necessary
to develop a national network of easily accessible ABA early intervention
screening programs that could routinely screen infants during their
first 18 to 24 months. These parent-infant programs would focus
on identifying and modifying contingencies and behaviors that might
prevent or inhibit acquisition of age-appropriate verbal and social
behavior. After these contingencies are identified, parents could
be taught to replace them with contingencies that would shape age-appropriate
verbal and social behavior by age 2 to 3 years.
The first step in initiating
this program could be to establish an “ ABA Autism Prevention/Early
Intervention Task Force.” This task force would be responsible
for beginning to develop a feasible action plan that would outline
the steps needed to establish ABA prevention and early intervention
centers and programs and assist in overseeing the development of
such a screening network. The task force could also outline a prospective
agenda of research that might further clarify how repertoires of
pre-autistic behaviors are originally established and maintained.
In addition, the task force could begin to explore possibilities
for funding through NIH/NIMH, and begin to create formal affiliations
with the NIMH programs previously mentioned that are currently
conducting prevention/early intervention research in autism.
Short Range Prevention/Early
Intervention Activities that Could Be Implemented Almost Immediately.
In addition to the more
comprehensive long-range prevention activities discussed above,
there are also less comprehensive action steps that individual
behavior analysts and autism treatment programs could begin to
take now. One of these would be for existing ABA service providers,
both individuals and groups, to expand their programs to include
a Prevention/Early Intervention component. One specific activity
that could be begun almost immediately would be to establish a
formal policy of recommending and conducting routine screening
and follow-up treatment, when indicated, of younger siblings of
children diagnosed with autism in their current and future case
loads. Screening programs for other children known to be at high
risk for the development of autism, such as the following, could
also be established.
1. The younger siblings
of children with autism. The concordance rate is 4.5%.
2. Monozygotic twins.
The concordance rate is 60%.
3. Dizygotic twins. The
concordance rate is 4.5%.
4. Seriously language
delayed young children that have not been identified as autistic.
Since there are hundreds
of ABA autism treatment groups, schools for children with autism,
and individual behavior analysts nationwide, implementation of
such a policy could begin to increase the identification and treatment
of children at-risk for autism at a much earlier age.
A third method for increasing
ABA prevention/early intervention activities in the near future
would be to establish on the Internet an ABA Autism Prevention
Consortium or interest group. Such a group could rapidly exchange
information, such as new procedures for early identification, effective
prevention techniques, sources of funding, and discussion of encouraging
new research developments. These exchanges could easily lead to
greatly increased interest and involvement in the prevention of
autism.
Conclusion
Although Applied Behavior
Analysis has been very successful in developing highly effective
programs for the treatment of autism, ABA as a profession has had
relatively little involvement in or impact on the development of
programs for prevention or earlier intervention in autism. At the
national level there is increasingly strong support for prevention
and related research by parent advocacy groups and by NIMH through
funding of programs for research in autism.
This paper outlines a
number of ways that ABA could begin to become actively involved
in prevention research and programming in the near future. By becoming
involved in these prevention and early intervention activities
now, applied behavior analysis may be able to make a substantial
and lasting contribution to the prevention or amelioration of autism.
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