There’s a great post over at Furious Seasons by Philip about Shari Roan’s LA Times story about a 6-year-old girl, January (pictured), who has been diagnosed with schizophrenia. As Philip points out, many of us are skeptical of such an early onset and skeptical of childhood diagnoses in general. The article has caused many reactions–good and bad–which Philip generously breaks down, and questions the strange lapse (from a journalistic standpoint) of omitting facts.
What disturbs me about the whole thing is that if you read her father’s blog (the content of which isn’t mentioned in the piece), which Philip links to, you get an uncomfortable sense that Jani/Janni’s father Michael is really stubborn about his daughter’s “lifetime illness,” as he calls it. Here’s an excerpt that shows some of this recalcitrance; I’m also uncomfortable with the bolded part.
We saw Janni today and she was at her most psychotic in several weeks. I have a nice welt on my arm where she hit me when I refused to call her toy rat “99.” Of course, I was goading her, but I wanted to see if she could deal with it. Of course, she couldn’t. She’d been talking about the rats for awhile (she is back to insisting they are real-these are the rats in her head) but now the violence is back. 400 the cat has reappeared after a long absence, and 400 cat is a bad cat that tells her to hit and scream (which she is also back to doing). She is on 300 mg a day of Seroquel is doing nothing. They need to up her Thorazine from 100 mg a day as that is the only thing that works. However, we are frustrated because the staff and doctors seem to thinking that it is just her “imagination” again, and considering autism and Asperger’s (even though this has already been ruled out time and time again). Yes, she “self-stems” as they call it, rubbing her hands together real fast….but that and the “autistic” behaviors went away at 300 mg of Thorazine. I don’t know why in the hell they are so resistant to labeling her “schizophrenic” but yet so eager to label her “Asperger’s.” Is schizophrenia really so much worse? But she fucking talks to animals and people who aren’t there! And she is violent! That isn’t autism! That’s psychosis! I feel like we are just going around and around in fucking circles here.
Autism and Asperger’s aren’t so cut and dry, but as Michael writes:
It is scary to think you know more than the doctors, but the fact is we do.
Do they? I’m reading and reading his blog and the article and I’m just not sure. I understand that feeling myself, of course. I often think that. And just as often, I’m surprised to discover that I still have so much to learn. Michael Schofield’s voice on his blog makes him come across as a very angry person with serious anger management issues–a person who’s self-aggrandizing and resistant to learning new things (and who can’t seem to spell his daughter’s name the same way consistently, which is just weird).
He comes across as a person who likes the sound of his own voice and a good, punchy, writerly ending to a post more than being open-minded about what’s going on. I understand this, actually, because once we find the Answer (not Allen Iverson, but the initial diagnosis), we cling to that diagnosis, as it’s the first time anyone has taken us seriously. But after clinging to a diagnosis that may or may not be correct, it’s time to let go so that treatment is dictated not by egos and desires (whether doctors or patients or parents) but by eliminating symptoms in a safe, healthy way.
Go to Philip’s page and read the whole argument, including the comments. It’s an important discussion.
Father Of Girl With Schizophrenia Admits Hitting, Starving Girl [Furious Seasons]
[Image by Lawrence K. Ho copyright LA Times. Please don't kill me, LA Times.]
More than almost any other brain-related disorder, autism’s origins continue to be mysterious and debated contentiously. Now a Somali community in Minneapolis is dealing with a concentration of cases that has parents in a panic. From the New York Times:
“I know 10 guys whose kids have autism,” said Ayub’s father, Abdirisak Jama, a 39-year-old security guard. “They are all looking for help.”
Autism is terrifying the community of Somali immigrants in Minneapolis, and some pediatricians and educators have joined parents in raising the alarm. But public health experts say it is hard to tell whether the apparent surge of cases is an actual outbreak, with a cause that can be addressed, or just a statistical fluke. … A small recent study of refugees in schools in Stockholm found that Somalis were in classes for autistic children at three times the normal rate.
In any case, many Somali parents are baffled and scared.
“It’s beyond denial,” said Hassan Samantar, a parent advocate at the Pacer Center for disabled children. “There was no word for this in Somali. We’ve seen Down syndrome and schizophrenia, but loosely termed — our word is more like ‘crazy.’ People are calling it ‘otismo’ or ‘the American disease.’ And some are saying it’s something you did or your parents did, and the curse is catching up with you.”
Many Somali parents here do not read English or watch American television, he said, so they first hear of autism only when a pediatrician suggests testing a child. Some send their children back to relatives in Somalia.
“They say, ‘There’s more sunshine, there’s less pollution, the food is fresher because the animal was killed that morning,’ ” Ms. Abdull said. “They say: ‘My kid won’t talk? Throw him in the middle of 20 other kids, and he’ll talk. They’ll tease him till he has to.’ You know the way kids run around in Africa? People are so isolated in their apartments here. They think maybe they’ll snap out of it.”
Of course, the biggest debate surrounding autism is that of vaccines and the contention that childhood vaccines may cause the condition. But some Somali parents have children here who weren’t even vaccinated, so appeals by vaccine-causation advocates is falling on deaf ears.
But there are also children like 8-year-old Shumsudin Warsame, who does not speak more than one word at a time, runs in circles and hurts himself jabbing pens into his face. He was born in Somalia, grew up in Egypt and arrived here six months ago. He started having seizures before he was a year old, his father, Abdiasis, said, long before he had any vaccinations.
To Mr. Warsame, finding something to blame is beside the point. He is a single parent, and he and Shumsudin were at a health center hoping to find a part-time home care aide.
“I have a friend from Somalia with three kids with autism, all born in Minnesota,” Mr. Warsame said. “I need help; we all need help. I don’t see a lot of people trying to help us. It’s better than it was in Egypt or Somalia, but it’s not what I expected.”
liz | 1:49 PM | autism
The many-years-long debate over the causes of autism aren’t likely to end soon, but a recent court decision will certainly shift the direction of the conversation. From the WashPo:
Thousands of parents who claimed that childhood vaccines caused their children to develop autism are wrong and not entitled to federal compensation, a special court ruled Thursday in three decisions with far-reaching implications for a bitterly fought medical controversy.
The long-awaited decision on three test cases is a severe blow to a grass-roots movement that has argued — predominantly through books, magazines and the Internet — that children’s shots have been responsible for the surge in autism diagnoses in the United States in recent decades. The majority of the scientific establishment, backed by federal health agencies, has strenuously argued there is no link between vaccines and autism, and warned that scaring parents away from vaccinating their youngsters places children at risk for a host of serious childhood diseases.
The decision by three independent special masters is especially telling because the special court’s rules did not require plaintiffs to prove their cases with scientific certainty — all the parents needed to show was that a preponderance of the evidence, or “50 percent and a hair,” supported their claims. The vaccine court effectively said that the thousands of pending claims represented by the three test cases are on extremely shaky ground.
More research needs to be done, said Brad Trahan, founder and executive director of RT Autism Awareness Foundation, and father to an 8-year-old with severe autism.
“I do know this, that until Reece got his MMR shots, he would say Mama and Dada, he was looking at the camera,” said Trahan of Rochester. “After that, we lost him. Are Joanie and I going to come out and say that’s the cause? No. However, it certainly warrants a lot more research. It would not surprise us someday, when we learn what the cause is, that there might be multiple factors. There still needs to be a lot more done to find out the facts.”
“It’s a profound verdict, but I don’t know that it will hit the hearts of everyone,” said Wendy Murphy, director of therapeutic schools for Easter Seals Metropolitan Chicago. “I think there’s such a deep-rooted need to know what happened. And I would imagine that the families that really, wholeheartedly believe the vaccine is the reason will continue to believe that.”
liz | 1:41 PM | autism