Hi. I wondered if anyone has any experience of any of these. My daughter (17) was in one for several months last year and, although she made progress and was not unhappy there, they were very ignorant regarding ASDs. It now looks as if she may need to be admitted again and I am wondering if there are any which are particularly good with people on the spectrum.
It seems very difficult to find research on conversion disorder in autism. I would suspect the research has not been done much. I think medicine is quick to give labels to things it doesn't understand or is able to prove against known causes, psychological labels. It's almost tantamount to saying "we don't know". My recommendation would be to write a diary of everything your daughter does when she is at home, what she eats and comes into contact with, and when the symptoms start. Sometimes things can be staring you in the face but when you are not expecting it you don't see it.
Think back to when she first ever had the symptoms. What preceded it? Was there any change in diet, any vaccination, any new medicine, significant practical change in her life, any illness/being unwell (however small), any trauma (either accident or psychological trauma), were her needs being met support-wise and was her autism being acknowledged. Think of everything you can, no matter how small, and document it. The only way to question or agree with the professionals is by knowing all the facts and seeing if there was a pattern. That is the only way you can begin to truly help someone.
You might find these interesting:
http://jnnp.bmj.com/content/72/suppl_1/i17.full.pdf
http://www.ageofautism.com/2012/04/tics-and-toxins-the-crazy-history-of-conversion-disorder.html
http://treato.com/Autism,Conversion+Disorder/?a=s
There's a very extreme (language used etc.) one here: http://autismwars.wordpress.com/tag/conversion-disorder/
http://www.ageofautism.com/2012/02/conversion-disorder.html
"Michael Jenike, a professor of psychiatry at Harvard Medical School, explains what PANS is and why it might account for the mysterious illness in Le Roy......It's the sudden onset of a neuropsychiatric disorder: OCD, anorexia or psychosis, cognitive problems. Initially, PANDAS was associated with strep. It turns out that other infections like mycoplasma, certain viruses, Lyme disease—these also produce the same thing. So it's not necessarily associated with strep, and they changed the name to reflect that. Now it's any sudden-onset neuropsychiatric disease.
I've even seen it in old people after they have mono, they suddenly have OCD. I've seen a lot of it after Lyme disease now, too....It's an autoimmune issue.....Mady Hornig at Columbia University has a mouse model that shows how it works. They give strep to mice, then give them another agent that breaks down the blood–brain barrier, and that induces a neuropsychiatric syndrome: the mice have trouble running mazes, and so on. Then they purify the antibodies from those mice, inject them in another mouse that never had strep, and that mouse gets the neuropsychiatric symptoms, too. That shows it's the antibodies doing the damage.....I used to think it was very rare, too. I've work on OCD my whole career, and I couldn't figure out why no one could pin down what was going on with these kids who had had strep. Then the parents got me involved, and I learned a lot more. I now think PANS is extremely common—way, way more common than we thought. I get e-mails from parents every day whose kids have it. I don't think it is rare, is the bottom line. The problem is, some doctors don't know about it, and some don't even think it exists, so it isn't diagnosed." "
I hope you are able to get to the bottom of what ails your daughter, it must be a living hell for her to be going through this, and terrible for you as her family.
It seems very difficult to find research on conversion disorder in autism. I would suspect the research has not been done much. I think medicine is quick to give labels to things it doesn't understand or is able to prove against known causes, psychological labels. It's almost tantamount to saying "we don't know". My recommendation would be to write a diary of everything your daughter does when she is at home, what she eats and comes into contact with, and when the symptoms start. Sometimes things can be staring you in the face but when you are not expecting it you don't see it.
Think back to when she first ever had the symptoms. What preceded it? Was there any change in diet, any vaccination, any new medicine, significant practical change in her life, any illness/being unwell (however small), any trauma (either accident or psychological trauma), were her needs being met support-wise and was her autism being acknowledged. Think of everything you can, no matter how small, and document it. The only way to question or agree with the professionals is by knowing all the facts and seeing if there was a pattern. That is the only way you can begin to truly help someone.
You might find these interesting:
http://jnnp.bmj.com/content/72/suppl_1/i17.full.pdf
http://www.ageofautism.com/2012/04/tics-and-toxins-the-crazy-history-of-conversion-disorder.html
http://treato.com/Autism,Conversion+Disorder/?a=s
There's a very extreme (language used etc.) one here: http://autismwars.wordpress.com/tag/conversion-disorder/
http://www.ageofautism.com/2012/02/conversion-disorder.html
"Michael Jenike, a professor of psychiatry at Harvard Medical School, explains what PANS is and why it might account for the mysterious illness in Le Roy......It's the sudden onset of a neuropsychiatric disorder: OCD, anorexia or psychosis, cognitive problems. Initially, PANDAS was associated with strep. It turns out that other infections like mycoplasma, certain viruses, Lyme disease—these also produce the same thing. So it's not necessarily associated with strep, and they changed the name to reflect that. Now it's any sudden-onset neuropsychiatric disease.
I've even seen it in old people after they have mono, they suddenly have OCD. I've seen a lot of it after Lyme disease now, too....It's an autoimmune issue.....Mady Hornig at Columbia University has a mouse model that shows how it works. They give strep to mice, then give them another agent that breaks down the blood–brain barrier, and that induces a neuropsychiatric syndrome: the mice have trouble running mazes, and so on. Then they purify the antibodies from those mice, inject them in another mouse that never had strep, and that mouse gets the neuropsychiatric symptoms, too. That shows it's the antibodies doing the damage.....I used to think it was very rare, too. I've work on OCD my whole career, and I couldn't figure out why no one could pin down what was going on with these kids who had had strep. Then the parents got me involved, and I learned a lot more. I now think PANS is extremely common—way, way more common than we thought. I get e-mails from parents every day whose kids have it. I don't think it is rare, is the bottom line. The problem is, some doctors don't know about it, and some don't even think it exists, so it isn't diagnosed." "
I hope you are able to get to the bottom of what ails your daughter, it must be a living hell for her to be going through this, and terrible for you as her family.
