Living with Autism: A Parent's Perspective

Over the years there has been several additions to the autism spectrum that have led to a varying of the belief and understanding of what autism is.
Among recent additions we find amongst others Aspergers and various others classed as PPD-NOS.
An issue was raised in another blog I read that causes me some concerns and it is something that my wife also mentioned. That is the fact that any testing done on autistic children are done on high functioning and/or aspergers children with little or no testing done on severely autistic children and/or non-verbal autistic children.

The problem with this approach is that it leads people to believe that there is little or no concern with what autistic children can achieve as those tested, with some solid behaviour modification treatments, could likely function acceptably if not necessarily excel in society on their own.

What this ignores is that there are non-verbal and/or severely autistic children who will likely never function properly without some form of supervisory care. Now while i do not understand the psychiatry involved in determining who should be added to the ASD grouping and i expect there is some logic to it as far as comparative symptomology there is a problem in that those who are severely autistic are not getting the care needed because of the dilution of the test results.

Basically what realistically needs to happen is testing over a large group of autistic children from the low end to high end of the scale preferably including those who would have fallen into the original autism classification, and with each successive classification being equal in numbers, IE. for every person in the original classification there should be one from each successive classification included in the testing. This testing should include a full battery of tests including full MRI, Full
brain scan, complete blood,urine and fecal testing as well as a complete DNA map and as many other neurological examinations as can be considered.

All this information needs to then be put into a large chart and an attempt to try to see what commonalities occur across this range and use this information to attempt to direct further testing.

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 fix this problem before the number of people requiring this level of care exceeds our ability to deal with it