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.
I would print off some autism information for them or email it to them, and point out specifically the types of thing she has problems with.
Thanks for your replies. She is not an inpatient at the moment but she is likely to be. I was really asking if anyone had experience of the inpatient adolescent mental health units and if any were better than others regarding understanding ASDs. There is no doubt she has conversion disorder which is basically caused by her severe anxiety translating into physical symptoms. As I think I said, when she was admitted last year she was unable to move but within 2 days of admission, she was walking around normally. However, they didn't address the anxiety and now her disordered eating (which was present but not severely) has got a lot worse to the extent that she is not eating solid food at all. When food is offered she gets conversion symptoms and is unable to move her arm, as soon as the food is removed, she is able to move again.
My concerns are to do with them ignoring the fact that she was on the spectrum on a day to day basis, in how they gave her instructions .. for example ...telling her to strip her bed etc (she had no idea what they meant). They then showed her what to do but when she asked again the next week, they expected her to know "we told you last week". What we have done here is visual reminders which work well.
Also, look into the possibility of it being an autoimmune condition rather than conversion disorder:
http://sjogrensworld.org/forums/index.php?topic=8430.0
http://www.experienceproject.com/stories/Have-Conversion-Disorder/2424496
http://www.lymeneteurope.org/forum/viewtopic.php?f=11&t=3840&sid=986c9e76fc6c50b718f50efb55e3b8ed
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.
Reading this I recalled I had read about catatonia and autism, but am struggling to find anything written about it in the books I kept.
It seems to be a development of autism where motor-control becomes harder and the initiation of movement is somehow blocked. So those affected appear to become immobilised and tend to do very little. Where in fact it may be the initialisation of a movement that makes them do such things less.
One authority on this is Lorna Wing bjp.rcpsych.org/.../357.full
"Catatonia in Autistic Spectrum Disorders" Wing L & Shah, A (2000) The British Journal of Psychiatry Vol 175 issue 4, pp357-362. It is manifest by an absence of speech and movement and fixed postures.
I've read elsewhere that sufferers stop eating and drinking. It can arise in old age or as early as teens, and is dangerous if not treated because, I guess, they deteriorate rapidly thriough not eating and drinking.
But there is also a paper by Lorna Wing on this downloadable from the NAS website, just cannot find it at the moment.
Of course with a medical profession that doesn't understand autism, the last thing they'd look for is an autism related cause.
Do you think her behaviour is deteriorating because she's in the facility? Or was it going the same way before she was admitted?
I confess to knowing nothing about conversion disorder, I'd never heard of it. So I looked it up, here are a couple of snippets from Wikipedia:
"Formerly known as "hysteria"...
The DSM-IV classifies conversion disorder as a somatoform disorder while the ICD-10 classifies it as a dissociative disorder.
Prognosis
The DSM-IV-TR states that conversion symptoms will in most cases disappear within 2 weeks in those hospitalized. One-fifth to one-quarter will have a recurrence within a year with this also predicting future recurrences. Acute onset, clearly identifiable stress at this time, and short time between onset and treatment are associated with a favorable prognosis.
Conversion disorder presents with symptoms that typically resemble a neurological disorder such as stroke, multiple sclerosis, epilepsy or hypokalemic periodic paralysis. The neurologist must carefully exclude neurological disease, through examination and appropriate investigations.[18] However, it is not uncommon for patients with neurological disease to also have conversion disorder.[19]
In excluding neurological disease, the neurologist has traditionally relied partly on the presence of positive signs of conversion disorder — certain aspects of the presentation that were thought to be rare in neurological disease, but common in conversion. The validity of many of these signs has been questioned, however, by a study showing that they also occurred in neurological disease.[20] "
Misdiagnosis is apparently at a rate of 4%. I will do a little more research.
No, it's no problem. She has severe anxiety which led to conversion disorder. When she was admitted she couldn't move at all. Although the conversion side of things is much better than it was, her eating has got a lot worse (she was already having some issues). She has been eating less and less and is now eating no solid food and existing only on milk.
Can I ask if she's being admitted on the basis of co-morbid mental health problems or things like self-harm? I don't want to be intrusive and you don't have to say, but I do worry if people are being admitted solely because of having ASC. It reminds me of autistics being misdiagnosed in recent history, with schizophrenia, being pumped full of harmful drugs and locked away in in-patient facilities.
