Should I have a brain scan & blood tests for 'research'?
Hi
I am an Aspie mother of an Aspie son, and, after getting my diagnosis a few weeks ago, I was asked if I was willing to participate in some research testing, including a brain scan and blood tests.
My son was given a brain scan for 'research purposes' when he got his diagnosis, and I know the psychiatrists at this hospital are interested that they have found a mother with AS, as apparently it's usually men or fathers who get diagnosed in adulthood.
However, after reading a few articles on the site, I'm concerned at how they will use this research.
I would be very grateful for views on whether I should have these tests done?
PhR33kY
Deinonychus
Joined: 13 Oct 2008
Age: 184
Gender: Male
Posts: 389
Location: Philidelphia, PA, USA
This would be my reasoning if I were in your shoes:
If there's a possibility that the information they collect from me can ultimately help improve the life of even one person, then I think I'm morally obligated to do so.
I recommend it, since it can't hurt, and if you're worried about what the tests are for, then ask the doctor what they're about.
_________________
"All generalizations are false, including this one."
--Samuel Langhorn Clemens a.k.a. Mark Twain
I would LOVE to take part in such a study by having a functional MRI, or whatever it's called. Of course, I would want to know the results. The idea of contributing to our knowledge of AS is exciting. I would love to leave my brain to people who would use it to add to our knowledge of AS. (not for a long time, I hope )
_________________
How can we outlaw a plant created by a perfect God?
PhR33kY
Deinonychus
Joined: 13 Oct 2008
Age: 184
Gender: Male
Posts: 389
Location: Philidelphia, PA, USA
I can not answer just yes or no to the poll question because under some conditions I would answer yes others no.
I want to help my fellow man which includes both NTs and non-Nts , and I view that adding to human knowledge is a good and noble thing to do. But at the same time I hold the view that not all experiments are a good idea to take part in.
I want to address several points.
1. How the results of the study will be used.
Some researchers are morally good people who treat us with respect and wish to do nothing to harm our interests, while others are the total opposite.
Because you sign up I would suggest that you find out who is funding the research and what it might lead to. For instance some research on genetics might lead to an antiautie or antiaspie discrimination or even the denial of the rights of auties and aspies to live. Prenatal screening for AS and autism is a nightmare which I think the world should take care to avoid, the idea of the designer baby is deeply wrong and has quite rightly been condemned by many different people.
2. How safe is the experiment
Some mental health experiments have involved taking a person whose condition was well managed and then changing the person’s treatment to discover things such as how quickly will things go wrong if a person suddenly stops taking their meds. Such an experiment might not be safe.
3. How safe is the experiment (radiation)
Some forms of brain imagining have close to a zero risk, such as the MRI methods, while some of them use X-rays and carry a risk of disease. If it is a study which involves imaging then ask about the radiation dose. Ask how many mSv (millisieverts) of dose it will give the experimental subject.
If you spot the use of CAT scans than take care as a cat scan can involve a large X-ray dose.
I am not radiophobic but I hold the view that exposure should be kept low, and that exposure without a medical or other benefit to the person exposed should be avoided or kept as low as possible.
For comparison keep in mind that 20 mSv is the yearly limit for a nuclear or radiation worker in most parts of the world while the occupational limit for the “general public” is 1 mSv. If they can not answer the question of X-ray dose then it suggests to me that the study is not well planned.
4. How unpleasant is the experiment
Some experiments might be rather horrible in terms of non physical risks, ask what the experiment will involve before signing up.
_________________
Health is a state of physical, mental and social wellbeing and not merely the absence of disease or infirmity I am not a jigsaw, I am a free man !
Diagnosed under the DSM5 rules with autism spectrum disorder, under DSM4 psychologist said would have been AS (299.80) but I suspect that I am somewhere between 299.80 and 299.00 (Autism) under DSM4.
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