PlainJaneDoe
Verified expert in neuroscience
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I am afraid to read more updates. It is so ugly and cruel.
Cohen further said people affected Fragile X have the ability to learn, but they typically learn by observing others.
"If this young man was not in school and seemed to be isolated within his own family, he didn't have a chance of learning appropriate behavior, of learning how to interact with people in society. Individuals with Fragile X learn from being in society, and to segregate them in school or at home or in life is just not a good idea," Cohen said.
Cohen, who was familiar with news accounts pertaining to Tutko, said he was at a loss to understand why the child apparently didn't attend school.
He noted that a child such as Jarrod Tutko Jr. would likely have displayed signs noticeable to health and social service professionals, and would have qualified for early intervention services well before turning five.
Reacting to statements that Tutko may have been too disruptive for school, Cohen said "There is no give up provision in public education."
What I read in this dreadful story is this: they knew about the fragile X yet they continued to have more children, quite a few more children knowing they would also suffer fragile X, and they did not look after them properly. The parents were not sensible, yet they had multi-handicapped children. I doubt the mentality of the parents. I doubt their ability to be responsible, they were not capable of the responsibility of raising children, and not of raising multi-handicapped SN children.
Think the parents have mental problems.
More complex than that, unfortunately. What do you screen for? There are many conditions you could screen for, some more common than others. How common does a condition have to be, before you screen everybody?
And then there are the false positives. Screening often produces them--and if the condition is relatively rare, they can actually outnumber correct detections. (Example: Fragile X is 1 in 2000. Screen 2000 people with a test that is 99% correct. Most likely you will get one correct diagnosis of Fragile X, and out of the 1999 pregnancies that are left, 20 will be incorrectly diagnosed as having Fragile X when they are actually healthy. Chances that you have a Fragile X child when the test is positive? Not 99%. Only about 4.7%.)
Screening tests also cost money. Some are cheaper than others. Some are invasive. Some pose risks. Some things can be treated; for others, the care is supportive.
Only when the test is very inexpensive, simple, and non-invasive, or when it can be done as part of routine medical care (i.e., no extra cost), do you screen every single person. PKU screening on newborns, for example: A rare condition, but the test is very simple and treatment prevents severe brain damage. Things like cleft lip and palate, some heart defects, spina bifida, and other disorders can be diagnosed during routine ultrasounds because they're visible on them.
There's no single answer, but because the tests aren't perfect, cost money, and can be invasive, screening everyone for everything is just not feasible. Screening high-risk groups--for Fragile X, people with a family history of Fragile X--makes more sense.
I am afraid to read more updates. It is so ugly and cruel.
I'm a lot more sympathic after reading that article.
I can not even imagine their lives.
me too