Future Directions for Research in Autism Spectrum Disorders – a critique

The following is the text of the Conclusions reported in a research paper that was published in PubMed.  Here is the link to it:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4163956


Conclusions

In the over seventy years since Leo Kanner first described autism (Kanner, 1943), there has been remarkable progress in the areas of improved understanding of ASD neurobiology, genetics, early identification, and early intervention. However, recent increases in ASD prevalence estimates suggest the pressing need to translate these gains into access to effective interventions for all individuals with ASD. Here we have highlighted promising areas for future research to increase the pace of scientific discovery and ultimately the translation of research findings into accessible and empirically supported interventions for those with ASD across the lifespan. Future research in the areas described in this paper will need to address the factors that have constrained treatment development thus far by shifting focus to the following: (1) the study of individual differences within the ASD population in order to better account for etiological and phenotypic heterogeneity; (2) a greater emphasis on mechanistic processes and longitudinal developmental trajectories rather than outcomes or endpoints; (3) understanding the high level of psychiatric comorbidities and overlapping features shared with other neurodevelopmental disorders; (4) integration of different research methodologies (e.g., behavioral and brain imaging measures); and, (5) the development of ASD interventions that match the needs and desires of individuals with ASD and their families, including improving the functioning of individuals with ASD while preserving the positive and unique attributes of each individual with ASD.

The red text from future directions for research in Autism Spectrum Disorders reveals a core problem with the search for effective interventions that might reduce or eliminate troublesome symptoms of autism in children and adults.  Future research will suffer if its focus is shifted (as in recommendation #2 above) “toward a greater emphasis on mechanistic processes and longitudinal developmental trajectories rather than outcomes or endpoints.”  Indeed, this recommendation contradicts the sense and substance of the authors’ own recommendation #5.

The need to develop “interventions that match the needs and desires of individuals with ASD and their families, including improving the functioning of individuals with ASD while preserving the positive and unique attributes of each individual with ASD” is an outcome-based target.  You can’t hit a target that you’re not shooting at, except by accident. 

Less than 1% of autism research funding is focused on treatment outcomes.  The narrow focus of research into searches for genetic markers, neurobiological patterns and other physical and pharmacological phenomena has left the focus on treatment outcomes starved of resources, and the result has been predictable.  For example, the use of a standardized criterion-referenced measure in the assessment of outcomes (using repeated measures with single subjects) is missing from this compendium of recommendations for future research into Autism Spectrum Disorders, despite its 176 references.

Researchers would do well to acquaint themselves with a treatment outcome measurement system that has been in use for 20 years (Kossor, 2018).  Precisely the sort of improvements called for in recommendation #5 have been obtained.  Over 1,000 treatment plans have been studied by independent researchers from four different educational institutions and 75% to 85% of treatment recipients have shown significant improvement in as little as four months, with sustained improvement over one year, and 90% finishing treatment successfully in three years or less.  Nevertheless, funding and support for more sophisticated research that would permit publication of these findings in prestigious peer-reviewed venues such as PubMed has been elusive.

Since 1992 in Pennsylvania, Behavioral Health Rehabilitation Services (BHRS) treatment programs have been associated with significant improvements in physical aggression, impaired safety awareness, unresponsiveness to caretaker prompts, communication deficits and socialization deficits, with an error probability of less than 1 in 10,000.  These programs have been funded by the EPSDT mandate of the Medicaid Act, so the parents of children receiving these treatments did not plunge into debt in order to obtain these services (which are available throughout the US; in 33 states, parental income doesn’t matter).  As the founder of an organization dedicated to the creation of these BHRS treatment programs, and the creator of the criterion-referenced measure of progress described here, there is certainly a conflict of interest to be disclosed.  But help comes from unusual places sometimes, and sometimes, it’s worth investigating.

References

  1. Kanner L. Autistic disturbances of affective contact. Nervous Child. 1943;2(2):217–230.
  1. Kossor S. The Kossor Scale: how to get and keep behavioral treatment funding for children.  2018; NSP Press.

 

 

 

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