If you’re the parent of a child with an emotional, developmental or psychiatric disorder, then you are familiar with the DSM-IV, or Diagnostic and Statistical Manual of Mental Disorders, 4th edition. This is the book that contains all the disorders the field of psychiatry uses as diagnoses. Starting back in 1952 there have been four editions of this manual published by the American Psychiatric Association. The DSM is a categorical classification system, which means that if a patient’s symptoms come close to the prototype described in the manual, that patient is diagnosed with that disorder.

The DSM comes under a lot of fire. Diagnosing mental illness is far from the exact science that we wish it could be. Many of the disorders in the DSM have overlapping symptoms, making it very difficult for even experienced professionals to accurately diagnose every patient. I’ve blogged about this before.

Yet, society has accepted the DSM, regardless of its shortcomings. Insurance companies make their decisions based on the diagnoses contained within this manual, and schools decide the validity of providing special education services to children with specific diagnoses.

Still, there are several disorders that seem more prevalent among the adoptive population that have yet to make it to the DSM:

1. FAS/FAE, ARND or whatever they’re calling this these days.
2. Sensory Integration Disorder or Sensory Processing Dysfunction
3. Complex-PTSD or Developmental Trauma Disorder

FAS – Fetal Alcohol Syndrome

Are you as surprised as I was to find out this is not a diagnosable disorder in the DSM-IV? So it stands to reason that Fetal Alcohol Effects (FAE), which is a term that’s on it’s way out, or Alcohol-Related Neurodevelopmental Disorder (ARND) aren’t in there either. There is a major push to see that FAS is included as a diagnosis, and not just a presumption under alcohol-related disorders, which are all focused on the adult consuming the alcohol.

Sensory Integration Dysfunction/Sensory Processing Disorder

This one isn’t in there either, but is exhibited in tons of post-institutionalized kids. It is often one of the things that makes them “look” autistic. Why? Because that is where SPD is mentioned, in conjunction with autism. So is it a real disorder? Many professionals and parents think so. There is a major push to get it into the DSM-V in 2011. Meanwhile, thousands of kids are not receiving the occupational therapy and sensory integration therapy they desperately need because either their school system or their insurance company doesn’t believe in SPD. After all, it’s not in the DSM-IV!

Complex-PTSD

This one is being spearheaded by the professionals who deal with trauma’s effects on young children. When I learned about this back in February I was amazed at how perfectly this disorder’s prototype fit my child. I truly hope this one makes it in, too, even though it hasn’t been “around” as long as FAS and sensory integration.

Interesting thing is there are still hundreds of professionals who will diagnose children with all of these disorders, and many who are successfully treating these disorders as well. Meanwhile, those gatekeeper types, the ones to the funding and support that overwhelmed families could use – like school districts, early intervention programs and insurance companies – are much less likely to accept these diagnosis because they just aren’t in the manual.

A note about RAD: This one is likely changing as well. Reactive Attachment Disorder is in the DSM-IV, but is believed by many practitioners to be extremely rare. Some have taken to diagnosing attachment difficulties on a continuum (similar to autism; PDD and Aspergers) and call Attachment Disorders a variety of things. Others (the splitters in the crowd) are more purists and believe if it’s not in the DSM-IV, then it isn’t a real diagnosis. Which leads this mom to ask again: Do Labels Really Matter?


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