After working with children on the autism spectrum throughout my pediatric career, my perspective changed when I married a man whose son was diagnosed with Autism at 2 years old. He became my step-son when he was 7. The diagnosis is frustrating for all of the obvious reasons but also in the broadness of the spectrum it encompasses. No two autistic children are exactly the same so why is there no more specification in the diagnostic process?
Clinically, I have seen subsets emerge that could really be used to further classify these kids, and help not only parents in seeking out the appropriate intervention for their child but also in providing supporting personnel the knowledge and tools to point them in the right direction. I have personally witnessed and experienced the "runaround" parents go through, wasting months, sometimes years, not to mention a small fortune, trying to navigate the right treatment plan that works for their child. It seems all children with this diagnosis are being funneled through the same treatment regime whether it is appropriate for that child or not.
First comes the diagnosis. The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) specifies two impairments associated with ASD: the impairment of social interaction and communication and restricted repetitive and stereotyped patterns of behavior with five diagnostic criteria:
A: social communication deficits, consisting of three items, all of which must be met to satisfy this criterion;
B: fixated interests and repetitive behaviors consisting of four items, of which at least two must be met to satisfy this criterion;
C: symptoms existing in early childhood;
D: symptoms impairing functioning; and
E impairments are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay
Once a child is diagnosed Autism based on these criteria, the only further classification is from "very severe" to "mild". There are tools that have been widely used to screen for, diagnose and give a quantitative value for a child with Autism including: The Childhood Autism Rating Scale (CARS), The Gilliam Autism Rating Scale (GARS), or a combination of the Autism Diagnostic Interview- Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS). These tests, although useful in their own rite, often equate to percentages and numbers that mean very little to the parents who are seeking to find appropriate help for their child. I have sat through IEP meetings with my husband and listened to the results of said tests, and afterwards had the conversation of "how are all of those percentages and rankings supposed to translate to a living and breathing child?"
To give an example, our son has High Functioning Autism with Central Processing Disorder and language delay, ADD with scripting and a handful of sensory issues including taste aversion. Professionals reading that description would have an excellent screen shot of what our son needs. A method of classification that is descriptive in nature in similar terms would be so incredibly helpful to parents and to professionals alike! A professional would look at that and decide the appropriate treatment avenue would be Speech Therapy for the Central Processing and Occupational Therapy for Sensory Issues. In school, he needs Speech Therapy and special modifications for subjects like English where reading and language are a problem.
I have seen other children who are Moderate Functioning Non-Verbal Autism with Sensory Seeking Vestibular and Proprioceptive Sensory Systems contributing to Defiance Behaviors. Again, a professional would get a very good idea of what that child presented like before even seeing him or her. This child would need Speech Therapy for communication, PT or OT for Vestibular and Proprioceptive Sensory Integration and an ABA therapist for behavior.
How about this one: Low Functioning Non-Verbal Autism with Sensory Avoiding Tactile and Vestibular Systems, Stimming, and Concomitant Toe Walking. Speech Therapy for communication, PT or OT for the Vestibular Sensory Integration and Stimming, and PT for toe walking.
Or: High Functioning Verbal Autism with Developmental Coordination Disorder (dyspraxia) and hypotonia. This child would be directed to PT.
We could save parents and professionals so much time and get these kids what they need faster! As we all know, early detection and treatment is key with children on the Autism Spectrum so a classification system of this type would only speed that process along.
It is baffling to me why the medical community has started including other diagnoses on the Autism Spectrum like Down Syndrome and Cerebral Palsy. Yes, I know it is a behavioral diagnosis but when looking at Downs and CP, there are accompanying cognitive challenges that are associated with each diagnosis itself. Do we really need to add them to the Autism Spectrum? In my humble opinion, it is diluting the diagnosis and making it more elusive. I understand that a child with CP may not have cognitive involvement so wouldn't it be better to keep CP in its own category with modifiers describing cognitive status? Lumping all diagnoses into one spectrum is frustrating for professionals like me who work in the pediatric field. And it is more frustrating for parents who are being handed an Autism diagnosis with no back up information. Surely, we can develop a better system? I, for one, would be on board!