Jodifa’s point is well taken. I am not sure that the situation is truly mislabeling or a system which promotes labeling without sufficient understanding and useful clinical underpinnings. This is a big reason why one of the best things you can do for your child is to become as educated about the intricacies of neurovariations that your child may have.
There are broad arrays of neurological variations that compromise the Autism spectrum. Sometimes they are completely benign or even beneficial. Sometimes an individual have only 1 or 2 or these variations but they create profound challenges. Others have a broad array which when in combinations create both challenges and gifts.
Real understanding and appropriate individual clinical and educational supports come from identifying each of the nerovariations and identifying the challenges and/or benefits that they present.
There are lots of people out there like Jodifa’s child who has neurovariations, which are part of the broader genetics, which are included in the set of autism spectrum genetics, but to label these children as Autistic/PDD-nos/Aspergers even if it might or might not be clinically “appropriate” does not really help the child without detailed information on the contributing genetic components and for those farther form the formal clinical definition can greatly distract for meeting the specific needs of that child. Yes in the broadest understanding of the science all of these individuals are somewhere “on the Autistic spectrum” but sometimes are better served by focusing on the specific variations, since so many poorly trained and informed clinicians and educators feel that there is some standard set of therapies and supports, which we all know is about as far from the true scientific understanding of Autism genetics as is possible.
Unfortunately since the much of the clinical, governmental, insurance and educational communities choose to only provide “support “ once an Autism diagnosis is in place (even poorly done ones which lack any significant documentation, recommendations or individual specifics as the neurovariations which contributed to the diagnosis). Clinicians and parents are often “stuck” with applying a diagnosis which it for the most part “useless” just to get “something” in the way of services. The good news is that NIH has a group working an best practices draft document that focuses on better and broader diagnostic procedures and including the individual genetic variations and their impact, findings and recommendations as an integral part of the diagnosis, of course this is the government we are talking about so it may be 5 year before it is finalized.
So for now the most important thing is to not accept a “label” diagnosis but to insist that the diagnosing clinician specify the underlying genetic variations and their impact and manifestations which are apparent form each of these and as additional ones are “found” (which is quite common) the they be formally added to the diagnosis. Without this the individualized therapies and supports that are so effective are often missed or underemphasized while unnecessary, ineffective and sometimes counterproductive therapies are done by well meaning but grossly undereducated clinicians and educators who do not have the skills and experience to differentiate the individual “pieces” themselves.
Like Jodifa sometimes if the parent is exceptionally well informed and does not need an Autism diagnosis to get services and/or if the autism genetic characteristics are limited and well enough defined you are far better of to avoid or not “stretch to” the formal diagnosis, if additional genetic characteristic become apparent as the child gets older, a high quality formal diagnosis can always be added.
Of course there is the “social semantics” of the autism spectrum which some will avoid at all cost despite the advancement of the scientific understanding over the past few year due to the stigma issues that those who are not informed as to the true nature of autism genetics still hold. This and the broad lack of competence by clinicians leaves many children with long term disabilities which they would otherwise overcome with targeted and effective therapies and supports, not to mentions the maladaptive manifestations that occur which lead to other clinically significant levels of anxiety, OCD and so forth.
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