Somali parent reacts to discredited autism study

Controversial autism researcher Andrew 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 Andrew Wakefield appeared. What's your reaction today to this news?

Idil Abdull: When Andrew Wakefield came, also Dr. (Mary Catherine) 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 Andrew 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 Andrew 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 Andrew 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.

(Interview edited and transcribed by MPR News reporter Madeleine Baran.)