At a cursory glance, recently proposed changes to the definition of Autism appear to be based solely on medical concerns. Supporters claim that a new definition is necessary to deal with perpetually rising diagnoses of Autism Spectrum Disorders (ASD). Ultimately, they argue that the new definition will lead to more accurate diagnoses and effective treatments. Experts contend that redefining Autism will allow clinicians to categorize patients in a manner most conducive to prescribing effective treatments; arguably, individuals diagnosed with Autistic Disorder should receive different treatment methods than those diagnosed with Asperger’s Syndrome, who are considered higher functioning. The current definition lumps too many substantially different, yet related disorders, into the same category and often results in inaccurate diagnoses or ineffective treatments. Proponents of the definitional change to Autism argue that it is due to inaccurate diagnostic criteria that diagnoses of ASD and related disorders are on the rise and costs associated with ineffective or inappropriate treatments are spiraling out of control.
However, while the initiative to change the definition of Autism is based on solid scientific evidence and research, it also has profound legal implications and ramifications. Far be it from me to claim that the American Psychiatric Association is in bed with insurance companies, but insurance companies may ultimately be the big winners here. Legislation requiring health insurers to cover ASD and related disorders has only been enacted in the last few years; currently, 34 states have passed laws related to insurance coverage and Autism. As one might imagine, insurance companies and their supporters fought (and are still fighting) tooth and nail against mandatory Autism coverage and are often of the opinion that parents and school districts should bear the financial responsibility for individuals with Autism. Most laws requiring mandatory insurance coverage for Autism were passed over the last four years. Keeping in mind, the relatively recent nature of laws mandating that health insurers cover ASD, how will the “slow to change” legal apparatus deal with definitional changes to Autism and related disorders?
Will the new definition result in the disqualification of individuals, previously diagnosed with ASD, but who no longer meet the criteria necessary to receive coverage even though their behaviors persist? Will legislators modify laws quickly enough to assist individuals who no longer meet the criteria for an Autism diagnosis, but who nonetheless need access to insurance benefits? Insurers will no doubt exclude individuals, who clearly require assistance, yet to whom there exists no legal obligation. One can only hope that legislators are paying attention and that they will take the steps necessary to ensure that the law keeps pace with medically based definitional changes.
Click here to review state laws regarding health insurance coverage and Autism.
It is interesting that such definitional distinctions are typically only possible regarding neurological (yet mental) or novel disorders. Take for instance Friedreich’s Ataxia, an autosomal recessive neurological (yet physical) disorder whose pathology or cause is known. Let’s imagine two individuals who exhibit similar behaviors (although not identical), yet differ drastically in symptomatic severity. Both have slurred speech, muscle spasms, and gait disturbance, but only one is confined to a wheel chair, cannot be understood by anyone outside the immediate family, and is unable to feed or bathe herself; one might imagine that these two individuals have altogether different disorders. Unlike ASD (whose cause is unknown), however, Friedreich’s Ataxia is known to be caused by a mutation in gene FXN (formerly known as X25); so anyone found to have the genetic mutation at X25 has Friedreich’s Ataxia regardless of any differences in the severity of the symptoms among those diagnosed with the disorder. Wouldn’t it be interesting if Autism and related disorders were one day shown to result from the same genetic mutation(s) and or cause(s), and the numerous observed behaviors are merely a matter of severity (which may result in alternative treatments)?
ASD diagnoses and treatment costs are rising. Something must be done to contend with these issues. One hopes that cost is not the primary motivation behind the definitional change. If the new definition will provide clarity and lead to more accurate diagnoses and effective treatments, then so be it.
“In the new analysis, Dr. Volkmar, along with Brian Reichow and James McPartland, both at Yale, used data from a large 1993 study that served as the basis for the current criteria. They focused on 372 children and adults who were among the highest functioning and found that overall, only 45 percent of them would qualify for the proposed autism spectrum diagnosis now under review.
The focus on a high-functioning group may have slightly exaggerated that percentage, the authors acknowledge. The likelihood of being left out under the new definition depended on the original diagnosis: about a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three-quarters of those with Asperger syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.”
Current Diagnostic Criteria for Autistic Disorder
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following:
(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(3) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play
C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.
Proposed Diagnostic Criteria for Autism Spectrum Disorder
Must meet criteria A, B, C, and D:
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
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