By Tim Kasemodel
The Minnesota Somali autism study released on March 31st 2009 has created quite a stir, but not as much as it should. It creates a certain enigma, a conundrum of sorts. While it attempts to assure the Somali community that the Minnesota Department of Health cares for them and wishes the best for them, it gives them no answers to the questions they have been asking them for so long.
Why? Why us? they ask. Yes, the MDH admits the Somali community was right, that their observations were correct. It appears there are indeed more Somali children receiving autism services than other children. But the MDH makes the strange disclaimer that the data they used for this study is not actually good enough to say for sure one way or the other.
What? How much did the taxpayer spend on this study?
We know that a certain New York Times writer took journalistic liberties by cherry picking information from a Somali family recently interviewed. He conveniently left out the fact they believed vaccines caused their child’s autism before anyone else had suggested it.
I too was once the victim of a young local journalist, who was only looking for the desperate autism parent to plug into his “vaccines are safe” article. He described me as having “the slightly overweight build of a former high school wrestler, and hair that matches the messiness of the house”. In the following paragraphs I am going to take certain “journalistic liberties” of my own to describe my experience at the media briefing held by the MDH. This is kind of a “therapy” of sorts if you know what I mean.
The Commissioner of Health Dr. Sanne Magnan started her media briefing with the basics of the study, moving on to a series of shameless self-congratulatory remarks about how the hard work and sincere efforts of many agencies combined into a collaborative effort to get to the bottom of the concerns of the Somali community. She mentioned that the MDH had met with “members of the Somali community” the day before, as if she was implying that the whole community was happy with the study. Then she ended it with the unbelievable clarification that the study means essentially nothing at all, no real conclusions were established. In the end, the answers to the questions from the Somali community were never answered.
I wondered how the MDH could ever expect the Somali families to believe they sincerely want to help when the MDH can look at this study and say it does not mean anything. A representative of the Somali organization Parents United Against Autism was in attendance. He left early in part because he was upset about the comment where the MDH met with “members of the Somali community”. He knows that that community only includes those Somalis who step in line behind the “It can’t be vaccines” mantra. If the MDH were being sincere, they certainly would have invited the group at the frontlines of the Somali autism cluster – those who answer the phone calls from scared parents begging for answers to help with a child so difficult to understand.
The robotics of her delivery and the completely confusing message was obviously convincing to the local media present. One of the first questions asked was “Will it be possible to determine if the Somali rates of autism are actually higher than the rest of the population?” What? I thought that was what the study was supposed to find out in the first place, and this idiot asked that question?
One question for the Commissioner came from a reporter who I felt had the slightly underweight build of a former high school chess team player, and hair that matched the glossy hue of his shoes. He addressed the criteria for qualifying for autism services and if services may have been given to kids who did not actually have autism. I thought this was an odd question, as if he thought a kid who qualified for autism services might actually be a neuro-typical child, but getting services he did not need. The Commissioner’s answer was as namby-pamby as the conclusion of the study was; some kids who are autistic don’t get services, some who are not, do, so we don’t know.
One of the Somali journalists present asked if they had looked at kids who originated from other East African nations as well. The answer was no; they only considered any family that listed “Somali” as the language spoken at home. Well, I suppose if you wanted to look at the rate of autism among Norwegians in Minnesota, you would only consider those who spoke Norwegian at home, right? I personally know of at least one Somali child who was excluded from this study because the family listed English as spoken at home. After all, is it so unreasonable to expect that some Somali immigrants could speak English at home?
Yikes! How much did the taxpayer spend on this study?
Another genius from the media asked about the difference between “administrative” (the latest and greatest catch phrase in autism) or “educational” autism qualification versus a medical diagnosis and what affect that has on the Somali rates. After the expected response that one cannot consider them the same, I was shocked to hear the Commissioner state quite emphatically that studies have shown that when taken to a clinician, 25% to 30% of educationally diagnosed kids are not given a medical diagnosis.
Wow. My hand went up instantly to question her source, but some unbelievably inquisitive reporter, obviously not well versed in media reporting, had a great question. It was something along the lines of “Where did you get that number from?” or something to that effect. As the commissioner tried to pretend she actually had read a real study or even a sentence or two that might back up what she said, Judy Punyko, the author of the study piped up to clarify. What she really meant was that it was based on “observations of various clinicians around the Twin Cities” and that was their opinion.
Does that not sound like “anecdotal evidence” to you? (More on that later.)
Throughout the briefing we heard over and over how the MDH was there to help, that what was important was looking forward to the next step, that this is just the beginning. We were told how they wanted to assure the Somali community they were willing to go to the ends of the earth to help them get the services their children needed. With all the baloney about how great a job they all did, all the different agencies working together, the Somali community was still left begging for answers they desperately needed. Why were so many of their kids eligible in for services at such a young age? Were their kids more susceptible to the more severe form of autism, the most obvious at that age?
So I asked the Commissioner if the MDH had considered looking into how many Somali kids were on the severe end of the spectrum and how many had less “costly” impairments. Well, by golly, that is just the kind of questions from the community that will get us discussing important issues, looking in the right directions.....blah, blah, blah……. The answer was that it was not on their radar, would be difficult, expensive. To me it is the most important question of all – across all ethnicities – so we can plan for these kids as adults.
I told the Commissioner that my wife Laura has been keeping track of the rates of kids “accessing autism services” (AAS for short) in Minnesota since 2003 and that the rate of 9 year olds AAS is currently 1 in 66. I asked if they could relate that to the rates they found in the study. After all, they only report percentages, and who really knows off the top of their head that a rate of 1.54% is really a rate of around 1 in 65 kids (except for Mark Blaxill)? The answer was simple to Judy Punyko – apples to oranges, she said. You can not compare 9-year-olds rates to that of 3-to 4-year-olds. While that is true, I was simply wondering if they noticed that the rates in the study were similar to those of older kids who had much more time to get an educational diagnosis.
After the briefing I spoke with Judy Punyko about where the comment regarding 25% to 30% of educational diagnosis not qualifying for medical diagnosis came from. As she had admitted that it was actually opinion, I asked her why the MDH gets to use anecdotal observation as a basis for denial of the actual increase in rates among Somali children. I said when parents use observations of what happened to our children, like developing autism after vaccinations, we get attacked. I explained it was inappropriate for the MDH to use those percentages from now on and urged her to discontinue its use. She looked at me with the stone cold face equal only to a cat responding to an order to get off the kitchen counter. It was like I never mentioned it at all.
I thanked Commissioner Magnan for her efforts (she is new to the post) but mentioned that we have been shouting about autism for years and it is far beyond time for more studies on rates. I implored her to forget about educational, administrative or medical diagnosis of autism and look at the rates reported by the Department of Education. The simple fact that 1 in 41 nine year old boys in Minnesota have enough developmental deficits to qualify them for autism services should scare the hell out of everybody.
She shook my hand and thanked me for attending the media briefing.
I got home and Laura had given me a printout of the study. Almost immediately I recognized something the Commissioner had said earlier: that over the three year study period the gap between the Somalis and non-Somalis “had narrowed”. A less confusing way to say that might be that the rate of Somali children born in 2005 qualifying for autism services decreased from those born in 2001.
What could have happened? This would be good to know, wouldn’t you think? What happened in 2003? Oh yeah, I remember, the last of the preservative level thimerosal containing vaccines for infants expired that year. (Never mind that trace level Hep B vaccines may still be on shelves today)
Most Somalis may have been on the Minnesota Vaccines for Children Program where the funding for their vaccines were provided by the CDC, which meant they were most likely given the cheapest and most available vaccines: preservative level vaccines. This means that it was not until the 2006 study cohort that the majority of the vaccines the kids in this study received were likely to be mercury-preservative-free. It could not have been staring the CDC as blatantly in the face as this study did. But remember, this study was never about causation or cure.
I guess it all comes down to what the Somali community will take away from this study. The MDH believes that the headlines in the paper and the pretty faces on the news will help them succeed in getting their message to the Somali community, That there is nothing to worry about, they have it under control, to trust them. I think they are sadly mistaken. They are looking for real answers, not platitudes. It is from the efforts of parents like Hodan, Patti, Abdulkidir, Tim, Zadiq, Laura, Abdulkarim, Libby, Fatima and Nancy that they will find answers.
Parents will make the difference, parents will be there to answer their questions the best we can. We will tackle the questions that the Somali community desire answers to, in a way the MDH will never be able to match. With sincerity.
Tim Kasemodel is the father of two boys affected by mercury from vaccines and husband to Laura. He is one of many parents joining together to help Somali families help their children affected by autism.