Parents of children with autism have many obstacles to getting their child the resources and support that they need. I was therefore concerned to hear about the increasing number of people who are reporting that their children are losing their autism diagnosis.
Why is this happening? Did their autism resolve? Did the parents ask for a second opinion?
In many of these cases the answer to all of these questions is a resounding "no" -- the children didn't change one little bit. What changed was the criteria for diagnosing autism, which is now based on the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This is the guidebook that is used to diagnose a range of different conditions including depression, bipolar disorder, and schizophrenia. There has been some debate as to whether the use of DSM-5 will reduce the number of people diagnosed with autism. Autism Speaks, a prominent autism advocacy group, has established an online survey that is beginning to discover that people with autism are being "undiagnosed" after having been reevaluated under the new criteria.
So why are people worried about losing their autism diagnosis?
A diagnosis of autism helps to ensure that special educational and social opportunities are provided to that individual; additionally, health care insurers are under increasing pressure not to deny coverage to people with an autism diagnosis. The reality for many people is that the loss of their autism diagnosis takes away many of these very helpful, sometimes crucial resources. I should emphasize that the gold standard for diagnosing autism remains a specialist clinical assessment. Doctors and other clinicians may very well have different opinions. Blood tests, brain scans, or psychological testing cannot make or rule out autism.
A little caveat
In order to prevent every child from having to undergo a reassessment, and with the knowledge that losing an autism diagnosis can impact health care and educational resources, a clear caveat was placed into the DSM-5. A stipulation that I feel many people with autism and their caregivers don't know about. This caveat can help protect families from being forced to undergo a "reassessment" on demand from any organization. The DSM-5 clearly states that anyone with an established autism, Asperger's, or pervasive developmental disorder that was diagnosed prior to release of DSM-5 should continue to be given the new diagnosis of autism spectrum disorder. This becomes especially important if there has been no clinical change in the child. It doesn't mean that the parents cannot seek out a second opinion, or that if their child develops new symptoms then other conditions cannot also be diagnosed.
As a physician, I realize that a fundamental part of my work involves moving past a diagnosis, and trying to make my patients lives better. While some children with autism may also have psychiatric or medical conditions that I can help treat, the vast majority benefit hugely from suitable educational and social skills resources. The reality is that these resources are so tightly tied to an autism diagnosis, that "undiagnosing" these children would be detrimental to their longer term outcomes. Our health care and educational systems struggle to help children that require assistance but lack a diagnosis.
Picking and Choosing
I think it would be duplicitous for any organization to pick and choose the components of DSM-5 that one would adhere to when looking at a child with a possible autism diagnosis. We cannot on one hand use the criteria to attempt to "undiagnose" a child with autism (and in the process put their educational, social, and healthcare services into turmoil), while on the other hand deciding to skip over the explicitly stated caveat that a previously made autism diagnose should persist.
I understand, and many researchers have pointed out to me, that grandfathering these autism diagnoses is scientifically messy at best. It may take decades to "clean up" the science; in the meantime, it's my duty to advocate for my patients.