Over the years, several additions to the autism spectrum have led to a varying understanding of what autism is. This can create issues if we don’t take proper care to make sure that no group falls through the cracks. Among recent additions to the Autism Spectrum, we find Aspergers and various other diagnoses classed as PPD-NOS.
I read a blog post, about an issue that causes me some concerns. Any testing that we do on autistic children is done only on high functioning and/or Aspergers children. There is little to no testing done on severely autistic children and/or non-verbal autistic children. There is a legitimate medical reason for this, an issue called Informed Consent. What bothers me, is that the group of autistics who are blocked from being tested is still subject to the results. This is because of the mistaken belief that autism affects everyone the same, even though it is so obviously wrong.
One problem with this approach is that it leads people to believe that there is little or no concern with what autistic children can achieve. This is because those tested, with some solid behaviour modification treatments, could likely function acceptably in society on their own. This ignores the non-verbal and/or severely autistic children who will likely never function properly without supervisory care.
I can not pretend to understand the psychiatry involved in determining who should be added to the ASD grouping. However, I expect there is some logic to it as far as comparative symptomology. Unfortunately, it results in a problem where those who are severely autistic are not getting the care they need. All because the test results do not take them into account.
What really needs to happen is testing over a large selection of autistic children (and adults). This means testing from the low end to the high end of the spectrum. This needs to include those who would have fallen into the original autism classification. The test needs to include equal numbers of individuals from each level of the spectrum. For every person with classic autism, there should be one from each new class (ie Asperger’s and PPD NOS) included in the testing. This testing should include a full battery of tests including MRI, EKG, EEG, blood, urine and fecal testing. It should even go as far as a complete DNA map and as many other neurological examinations as possible.
We then need to put all the base (non-identifying) information into a large publicly available chart. Then we will identify what commonalities occur across this range. We then must use this information to direct further testing more effectively. The testing needs to, identify supports and therapies that allow each individual to reach the peak of their abilities.
A good example of the reason why additional testing is needed can be found in this article in the Telegraph-Journal which mentions the cost of caring for a severely autistic man over the course of a year at being close to $500,000. We need to find ways to direct our funding so that those who need it have access to it. The alternative is the number of people requiring this level of care is going to exceed our ability to afford it
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