How Would the Proposed Definition of Autism Spectrum Disorder Affect Occupational Therapy?
By Stephanie Yamkovenko
Update May 17:
Despite concerns to the contrary, preliminary results of a study released last week show that the proposed definition of autism might not be as limiting as many first thought it would be. Autism Speaks announced last week that the proposed definition of autism in DSM-5 does not reduce the number of individuals who receive an autism spectrum disorder diagnosis.
Read more here.
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| In an educational video, a 20-something young man talks about how he is living a full and meaningful life despite his diagnosis of Asperger's syndrome. Twenty years later, Benjamin Nugent now knows that he never had Asperger's and was simply a socially awkward teen who would rather spend time reading books than making friends. |
His diagnosis was based on the criteria in the American Psychiatric Association's (APA's) Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), but after he graduated and moved to New York City he met people who shared his interests, and his symptoms seemed to disappear.
Many may know that the APA is revamping the entire structure of the DSM-IV, including the proposed new definition of autism for the fifth edition, but one question many occupational therapy practitioners have is, how will the new definition affect me and my clients? AOTA talked with autism experts in the profession to get their opinions and impressions of the new definition of autism.
At the time of Nugent's diagnosis, he fit the DSM-4 criteria, but some researchers and health care professionals say they have not been using that criteria for years. "We haven't been using the old DSM criteria for some time," says Tara Glennon, EdD, OTR/L, FAOTA. "The current language that we use is autism spectrum disorder. Literature has been using the current terminology of autism spectrum disorder—including AOTA's autism book—even though that's not what's in the DSM yet. The classification system has been outdated for a while."
Better Criteria Mean Better Outcomes
Despite fears of some that a new autism definition may limit access to services for some children, the medical director of the APA says the new definition will help with better diagnoses and interventions.1 AOTA's autism experts agree. "Anything that gives more clarity on the disorder, what it does and does not include, is helpful as it improves our ability to identify how best to support these individuals," says Glennon.
One of the areas that could benefit the most from more clarity is outcomes research.
"Research into the benefits of interventions may be helped by greater specificity," says Heather Miller Kuhaneck, MS, OTR/L, FAOTA. "If that is the case, then over time, our knowledge about the efficacy of interventions for different types of children could be enhanced. The changes in the DSM may allow researchers to be more clear in their recruitment of samples or at least in their reporting of who was included in particular studies, which over time may allow us to better determine which interventions work best for which types of individuals."
Occupational Therapy Looks Beyond Diagnosis
Children are referred to occupational therapy because they are having difficulty participating in one or more occupations, not because they have a particular diagnosis. A diagnosis is usually made by the physician or other referrer.
"The proposed changes should not have an effect on the way in which occupational therapy services are delivered to our clients," says Renee Watling, PhD, OTR/L, FAOTA. "Our services are not diagnosis driven but are customized according to the individual occupational profile of each client. If an individual does display challenges in occupational functioning, that individual should still be referred for occupational therapy services. Of course this is dependent upon those making referrals having awareness of the range of areas addressed by occupational therapy practitioners."
"Occupational therapists treat each child as an individual," says Miller Kuhaneck. "We collaborate with families on the appropriate interventions given what we find after completing an occupational profile and our thorough evaluation of the needs of the family and child. I don't think it will matter to us whether a child is labeled with ASD, or autism, or Asperger's syndrome, or pervasive developmental disorder-not otherwise specified (PDD-NOS)."
Effects of New Definition in the Clinic
However, the criteria may narrow or change who gets diagnosed and thus referred. "The direct impact to occupational therapy is difficult to determine," says Watling. "If diagnosis of high functioning autism (HFA) and Asperger's becomes more restrictive, referrals of individuals with these conditions to occupational therapy could decline, especially for individuals who are age 18 and older."
"It may not change the services and supports we provide these children, but it might influence the funding streams," says Glennon.
Miller Kuhaneck believes that the new definition will not mean that individuals already diagnosed with autism spectrum disorder would lose their diagnosis. "The fear is that people with Asperger's or PDD-NOS perhaps would not meet the new definition and may lose their services," she says. "If we assume that most clinicians want to help those in need, and given that any diagnosis is somewhat subjective, we can hope that the latitude given clinical professionals will allow them to continue to provide services to those who need it."
Watling agrees that the proposed criteria continue to include some degree of subjectivity. "I anticipate that different providers will diagnose with more leniency than others, just as is the case now."
One positive aspect of the proposed definition is the recognition of sensory problems as a component of ASD.
Opportunity for Occupational Therapy
In addition to better diagnoses and better research in outcomes, Miller Kuhaneck points out that the new diagnostic criteria will include sensory issues. "Many individuals with ASD deal with a variety of sensory processing difficulties," she says. "Having this addressed in the diagnostic criteria could open doors for greater provision of occupational therapy intervention for individuals with ASD and may also lead to more research in this area."
The new definition of ASD will not be final until the APA publishes the DSM-5, which is planned for May 2013. APA will ask for additional comments on the proposed definition this spring. "I recommend that practitioners read the proposed criteria and consider how they might impact the individual clients on their workload," says Watling. "This should help practitioners in contributing comments that are relevant to the issue of diagnostic criteria and that reflect the lived experiences of our clients."
Clarifying the Catch All Diagnosis
Nugent recently wrote an op-ed article for the New York Times and says he believes that if his Asperger's diagnosis had come sooner in his childhood, he might have spent his teen years believing he was hard wired to find social interaction baffling. He thinks the new criteria will eliminate the problem of psychologists labeling clumsy and lonely teenagers with a condition they do not have.2
"There is some worry that autism is becoming a catch all diagnosis," says Glennon. "The question then becomes: If we want to measure our outcomes for interventions, and the pool of children in the study may or may not really be on the spectrum, then how do you accurately measure the impact of our interventions? Also, for researchers, there is much merit to getting a better definition— it helps get a better handle on the numbers and identifies the specific pool of children to be studied related to etiology, cause, potential early diagnosis, and effectiveness of interventions."
References
1. American Psychiatric Association. (2012, January 20). DSM-5 proposed criteria for autism spectrum disorder designed to provide more accurate diagnosis and treatment. Retrieved February 10, 2012, from http://www.dsm5.org/Documents/12-03%20Autism%20Spectrum%20Disorders%20-%20DSM5.pdf
2. Nugent, B. (2012, January 31). I had Asperger syndrome. Briefly. Retrieved February 10, 2012, from http://www.nytimes.com/2012/02/01/opinion/i-had-asperger-syndrome-briefly.html
Stephanie Yamkovenko is AOTA's staff writer.
