Somali parent reacts to discredited autism study

[Guest guest]

Somali parent reacts to discredited autism study

by Tom Crann, Minnesota Public Radio

January 6, 2011

St. , Minn. — Controversial autism researcher Wakefield, who met with

Somali parents in Minneapolis last month, was accused Thursday of doctoring

information about research subjects.

Wakefield's study that appeared to link a childhood vaccine to autism has

already been widely discredited. The new report published in the British Medical

Journal called Wakefield's work " an elaborate fraud " and said the researcher

fabricated information about the children involved in his study.

Wakefield appeared in Minnesota last month attempting to gather data and raise

funds for research into an alleged higher rate of autism among Somali-American

children. He told about a hundred people gathered at a Somali-owned restaurant

that they could help find the cause of autism.

Idil Abdull, the co-founder of the Somali American Autism Foundation of

Minnesota, attended the meeting. Her son has been diagnosed with autism.

Abdull discussed the Wakefield controversy with MPR's Tom Crann on Thursday.

Tom Crann: I understand, Ms. Abdull, that you were there back in December when

Wakefield appeared. What's your reaction today to this news?

Idil Abdull: When Wakefield came, also Dr. ( ) DeSoto came,

who's from (the University of Northern Iowa). And she's actually the one who

contacted us and said, 'I've noticed this report that your community has a high

rate of autism, and I'm very much interested in doing research from an

environmental point of view.'

So that's how that meeting took place, and that's what happened. And I'm glad

there are people, Tom, that are interested in us because, as you know,

Minnesota, particularly the University of Minnesota has not done any research on

us or even autism.

And so, you know, as a parent and as a mom, it's very frustrating, and it's very

confusing, and it's very (saddening).

Crann: Do you feel that when Wakefield appeared here, did you get a sense he was

trying to be deceitful or that these charges of fraud make any sense to you now?

Abdull: I didn't get any sense of anything from Wakefield, and we were

concentrating on Dr. DeSoto, trying to figure out--. And she asked a very good

question. Why aren't people in Minnesota trying to study this? Why aren't people

trying to figure out what causes autism?

And I really wish that autism was in the news as much as it is today every day,

because there are parents suffering with this on a daily basis.

Crann: There is always a sense, when it comes to good scientific research, and

the Minnesota Department of Health spokesman said this, that it would require

some patience. These things do take time.

What's your sense from parents like yourself who are in similar situations in

the Somali community concerning that? Are you willing to, if it's necessary, be

patient on this front, as frustrating as that might be for you?

Abdull: As a mom, once you take your child to the doctor, and they tell you he

has or she has autism, 'We don't have a cause. We don't have a cure,' you're

going to an anger ... stage. And you say, 'No, no, no, no. You're kidding. Give

me an antibiotic. Give me something to help my child.'

But as an advocate, yes, I understand research takes time. I understand that to

get hardcore data, it takes years, but if we don't start, then we will never get

there. I really would like them to step up and to say, 'Well, now there is a

golden opportunity. There's this community that is genetically and ethnically

very close that is hitting them higher. Maybe they hold the answer.' And we

won't know, Tom, until they actually come and study us.

Crann: Finally, I want to follow up on Wakefield, and ask again what

might be a difficult question, but despite the fact that his work has been

discredited today - a medical journal said it was an elaborate fraud - how do

you weigh that against the frustration that you said you're happy that anyone

would show interest?

Do you have to advise other parents in your situation, though, to be cautious

and make sure it's the right person, with the right research?

Abdull: For a parent, because we know what happened to our kids--. The doctor

doesn't know. The psychologist doesn't know. The pediatrician doesn't know, but

for the parents, because we know what happened, from what I saw in

Wakefield, he seemed to listen to the parents. He never said, 'Your question is

too long. I'm not going to answer. I don't have the time. You've got 15 minutes

and you're done.'

He really seemed like he was listening and, believe it or not, he left where

there were at least another 20 or 30 more questions for him. So, you know, let

this be a lesson that we are hungry for answers.

We are desperate for answers. Yes, we want research that's credible, that makes

sense, that at the end of the day, we get to the end of the tunnel, and that is

a cause for autism and a cure for autism, but right now in Minnesota, we don't

have that. We don't have it anywhere in the world.