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
About this blog
We are now going to start working on this blog again.
To update the situation at present our son is developing some words, they are not clear but they are definitely there and if you listen you can understand what he is saying or reading as is more generally the case.
Last night he sat with me and read an entire thomas book with only approx 4 words that he did not know and say to some degree of success himself which is quite good from where we started. He still could not hold a conversation and I would never consider him verbal by any means but he is gradually learning the ability to read out loud some of what he appeared to be reading to himself in the past.
What we find disturbing is that almost all progress appears to be made at home with almost no progress being shown at school (they dont see the progress at all, or when they do it is weeks behind what we see) and we find this to be one of the most disturbing issues to us is that we all know that pure and simply he needs to be taught using ABA which we do, but in school the amount of ABA that can be used is limited when he is in the classroom even tho one of his TA's is ABA trained.
As we approach the summer my wife and I intend on working with our son over the summer to see just what we can accomplish and then when we return to school in the fall we intend on watching closely to see what progress they make in return. If necessary we will have to have a meeting to discuss why they cant make the progress we are seeing and how to correct it.
It may seem a bit harsh to those of you who dont have autistic children however when you do you learn to understand your childrens needs and how to adapt to get them to learn what they need as they grow.
To start the history a bit our son was diagnosed as non-verbal autistic meaning on top of the general autism traits our son also could not talk and so had no method of expressing himself
Three years later he still is unable to talk much, generally a word here or there with some minor exceptions and definitely not sufficient to make any communication by this form possible.
He has over time learned the pecs method of communicating and has also developped other physical methods of getting his point across (ie getting juice from the fridge to tell us he wants a drink)
With the increase in communication and our increase in understanding him he has become far less frustrated and therefore much more open to additional options and lessons
It should be pointed out to parents who have just recently had a child diagnosed with autism that this is not the end of the world by any means. Yes you are going to have to deal with behaviours etc that you would not expect or tolerate out of other children and you have to find constructive ways to try to work around these behaviours however you will find that most autistic children once some form of communication has been established can be extremely happy children.
It also should be noted that with approximately 1 in 100 children are being diagnosed with varying forms of autism so again to those who have children recently diagnosed with autism, you are not alone.
encourage and allow your children to play with various electronic toys (vtech toys worked best for us) as you might be surprised at how well they adapt and this does include various complicated type toys like vsmile and leapster. If your child is hard on toys (rough, possibly throwing and dropping) then you will find the leapster is rugged enough while the vsmile is a bit more fragile.
