Minnesota and the CDC Confer on Somali Autism Situation: CDC’s Office of the Director: Autism May Result from “Chemical Exposures”

[Guest guest]

http://www.ageofautism.com/2008/11/minnesota-and-t.html#more

Minnesota and the CDC Confer on Somali Autism

Situation: CDC’s Office of the Director: Autism

May Result from “Chemical Exposures”

November 24, 2008

Managing Editor's Note: Welcome Huffington Post

readers. referenced the post below on

HuffPo

<http://www.huffingtonpost.com/david-kirby/breaking-news-autism-may_b_146217.htm\

l>HERE.

By Kirby

On Saturday, November 15, I attended a daylong

forum in Minneapolis on autism in the Somali

immigrant community there, where the rate of

autism among Somali children in the public

schools had been reported at 1 in 28 kids.

At the forum, Dr. Judy Punyko, an epidemiologist

for the State Department of Health, was expected

to present at least preliminary findings on the

prevalence of autism among Somali schoolchildren

in Minnesota. The 80 or so Somali parents who

attended were disappointed, by all accounts, that

Dr. Punyko had no way to tell them if autism

among their children was, as they strongly

suspect, more common than among non-Somalis the same age.

Dr. Punyko said she had conferred with officials

at the CDC on how to best measure the rate of

autism in this particular population, but that

she was still waiting for data requested from

Minneapolis Public Schools (MPS), even though she

had put together a panel of experts to examine

the issue back in August. She said that MPS would

get her the data sometime in December, and that a

report on the prevalence issue should be ready in March, 2009.

A few days after the forum, I discovered two things.

1) Back in July, Minneapolis Public School

officials had furnished data on autism in Somali

and non-Somali speaking students for the

2007-2008 school year to journalists, parents,

and the Minnesota Department of Health

(<http://www.ageofautism.com/files/somali_data.doc>HERE).

2) Officials at the CDC were scheduled to listen

to Dr. Punyko present “findings” on a possible

“Somali autism cluster” at the CDC in Atlanta on

Tuesday, November 18. It seemed odd to me that

Punyko would be discussing her findings at the

CDC, but did not mention that fact three days

earlier at the Somali autism forum in

Minneapolis. It also seemed odd that she would be

presenting “findings” in Atlanta, when she told

us that MPS would not be furnishing any data to her team until December.

And so, I wrote to the Minnesota Department of

Health and to the CDC to see if I could clarify any of this.

Initially, I got this reply from Doug Shultz, of the MDH Communications office:

“Dr. Punyko was invited by CDC to participate in

a grantee meeting of other states that receive

CDC grants to implement autism surveillance

systems (although MN is not a grantee). This was

an opportunity for Judy to learn more about what

other states are doing to address how best to

gather data about autism. She will not be

presenting any data from Minneapolis. Please let

me know if I can be of further assistance.”

This was not consistent with information I was

getting from sources within HHS, so I persisted,

and wrote back for further clarification.

I am very happy to report that both agencies --

MDH and CDC -- responded with notable courtesy,

respect, promptness and, I feel, thoroughness.

And for that I am very grateful to them.

Because they obviously took the time and trouble

to answer my questions thoughtfully, and in

detail, I have decided to publish the exchanges,

verbatim, below, with just a few key

observations. (Thank you for your patience as you

wade through it – I think that it provides

everyone with invaluable insight into the

thinking and working of government epidemiologists):

A) The state and federal governments clearly take

this situation, and the concerns of the Somali

parents, seriously. They are not trying to sweep

this under the rug or make it just go away. They

know they have a situation on their hands – one

that could potentially be hugely significant –

but they are proceeding with caution.

Even so, public health officials are not at

all convinced that they’re dealing with a Somali autism “cluster” in Minnesota.

C) It is difficult to assess autism prevalence in

such a “fluid” immigrant community as Somalis,

according to state and federal officials.

D) It is also difficult to know exactly how many

Somali students in MPS actually have an autism

diagnosis, as school services are based on

educational evaluations, and not medical analyses.

F) It’s possible that the number of Somali

students with autsm is artificially high. For

example, there are no Somali students in

Rochester, MN – did their families migrate to

Minneapolis-St. for better services after receiving a diagnosis?

G) It’s equally possible that the number of

Somali students with autism is artificially low.

For example, some Somali families listed English

as the primary language spoken in their homes,

meaning their children with autism would not be

counted as Somali. There is also evidence to

suggest that Somali parents of children with

milder cases of autism (where the child is

speaking) will reject an ASD classification or services for their child.

H) Even if autism rates are the same as

non-Somalis, they are exponentially higher than

autism rates among children in Africa (See Mark

Blaxill's piece <http://www.ageofautism.com/2008/11/out-of-africa-a.html>HERE.)

I) Finally, the CDC response includes one of the

most extraordinary statements on autism that I

have ever seen from a federal agency, and it

would appear to shut the door on the old 20th

Century viewpoint that autism is “strictly

genetic,” and that increased numbers could

therefore only be due to better diagnostics and greater awareness. To wit:

“There are likely multiple causes of the autism

spectrum of disorders. Most scientists agree that

today’s research will show that a person’s

genetic profile may make them more or less

susceptible to ASDs as a result of any number of

factors such as infections, the physical

environment, chemical exposures, or psychosocial components.”

THE RESPONSE FROM MDH

Here are my questions to MDH Officials, and the

answers that were provided by Buddy Ferguson,

Risk Communication Specialist, who wrote:

" The questions that you e-mailed on Wednesday to

Doug Schultz raise a number of important issues,

so we wanted to respond to them individually, and

also offer some broader observations. I have been

asked to respond on behalf of Doug and the MDH

Community and Family Health Division. "

1) Why did Dr. Punyko say at the autism forum on

Saturday that she had not received data about

Somalis with autism in the Minneapolis schools,

when this apparently was not the case?

2) What other data is Dr. Punyko waiting upon

from local public education officials (figures

she said she would not have until sometime in December?)

Items #1 and #2: In terms of Dr. Punkyo’s

presentation at the forum on Saturday, she did

not mean to imply that she had received no

information from the schools, but simply that her

information is incomplete. When she presented at

the forum, she was still awaiting information

about the place of residence of the students who

are receiving special services from the school

system, and the classification of students who

receive those services. For reasons I will

describe below, this information is important if

we are to develop a clear picture of the issues

we are facing with regard to the Somali community

and Autism Spectrum Disorder.

3) What possible explanation is there for the

high rates of autism among Somalis in M/SP, but

zero cases reported in Rochester schools?

Regarding the difference in reported autism cases

in Rochester and Minneapolis/St. , right now

we do not have the kind of statewide data that

would allow us to make that comparison. We do not

have a statewide autism surveillance system in

Minnesota, and setting up such a system is a

complex undertaking. Simply relying on data

regarding which and how many students are

receiving special services is not a substitute

for a good surveillance system * again, see below for a fuller explanation.

4) Why didn’t Dr. Punyko mention at the forum

that fact that she was travelling to Atlanta to

take part in a grantee meeting for autism

surveillance in a number of states? (This would

have been pertinent and welcomed news - it seems

odd she would not have told us about it).

If Dr. Punkyo neglected to mention her pending

trip to CDC, it was because her participation in

the national meeting was simply part of the

ongoing, informal conversation she has been

having with CDC regarding the issue of autism in the Somali community.

This was a meeting held primarily for the 14

states that have received CDC grants to develop

autism surveillance systems. Those states do not

include Minnesota. Judy was simply extended an

informal invitation to attend for one day of a

three day meeting, so she could benefit from the

discussion, get advice from the other states, and

briefly share what she knew about the situation

in our state. She was not providing them with any

information not already available to forum

participants (a copy of her PowerPoint is

attached), so there was little reason to share her travel plans.

5) I could find nothing on the CDC website or

elsewhere about the November 18 meeting in

Atlanta. What information can you provide to me

regarding the autism grantee meeting at the CDC

on November 18, 2008. Specifically, can you

provide me with any of the following?:

A) Invitation to attend the meeting that was received by Dr. Punyko.

An agenda for the meeting.

C) A list of attendees and states represented.

D) Minutes from the meeting.

E) Copies of Dr. Punyko’s notes from the meeting.

Item #5: In additional to the PowerPoint, we are

also sending you a copy of the e-mail messages

sent and received regarding Dr. Punkyo’s

participation in the CDC conference. Again, this

was very informal - the invitation was handled

via e-mail.

(<http://www.ageofautism.com/files/addmdr_punyko_meetinginvite.doc>HERE)

- I am also attaching a copy of the conference

agenda and Dr. Punkyo’s notes, in a single

PowerPoint file

<http://www.ageofautism.com/files/autism_among_somalis_in_minneapolis_minnesota.\

ppt>HERE.

We do not have meeting minutes or participant

list. You will need to request them from CDC,

although my understanding is that CDC may not

have minutes available for this type of event.

(NOTE: The meeting agenda is

<http://www.ageofautism.com/files/agenda_notes.pdf>HERE

Dr. Punyko was scheduled to speak at 1:10 PM on

“ASD among Somalis in Minnesota.”

6) It seems logical that Dr. Punyko would have

shared the Somali autism data (attached) with

authorities at the CDC at some point by now. Did

she discuss this information with anyone at CDC

prior to the meeting on November 18, and/or did

she discuss autism numbers among Somalis in

Minnesota with CDC officials at any point during

her trip to Atlanta this week -- either during

the official proceedings, or at some other time during her visit?

As previously noted, Dr. Punkyo has been sharing

information about autism and the Somali community

with CDC, on an informal basis, for several

months now. Her PowerPoint should give you a

sense of what she discussed at the conference

session on Tuesday. However, she didn’t

necessarily share information about the special

education classification of Somali students in

precisely the same format that you provided it to us.

The critical thing to understand is that this

information doesn’t necessarily provide a clear

picture of autism in the Somali community - again, for reasons discussed below.

7) If it is determined that there is a Somali

autism “cluster” in Minnesota, what happens next?

Is the CDC required by law to investigate?

There is no specific legal “trigger” that would

require a particular action in response to an

identified problem regarding autism in the Somali

community. We will continue to investigate this

issue with the resources we have available -

which are, unfortunately, limited. We will

continue to work closely with CDC, seeking their

assistance when appropriate, as we proceed with our investigation.

Identifying the Problem.

In addition to answering your specific questions,

we also want to offer a couple of larger

observations about the task that now faces us.

What we have right now is simply classification

data used by the public schools in assigning

children to receive special education services.

This is not the same as diagnostic data: The

children who have been classified in that way may

or may not have received a medical diagnosis identifying them as autistic.

In fact, some of the children so identified in

the summary you provided may not be autistic,

although they may be facing other kinds of

challenges. There may also be autistic children

who do not show up in that data because they do

not receive special education services through

the schools, but are receiving services from some other source.

Even if we did have a complete and comprehensive

picture regarding the number of autism cases in

the Somali community, it would still be difficult

to calculate an “autism prevalence rate” for this

population. The Somali population in Minnesota is

large and highly fluid. Large numbers of Somalis

are migrating to the state all the time. In fact,

we have the highest “secondary immigration rate”

in the country - that is, we are the top

destination for Somalis who first settled

somewhere else when they initially entered the

country. Estimates from the state demographer’s

office have placed Minnesota’s Somali population

at anywhere from 15 to 40 thousand.

In short, in terms of calculating the actual

prevalence of autism in Somali children, we have

neither a reliable numerator nor a reliable

denominator. While we appreciate your diligence

in attempting to calculate observed versus

expected autism rates based on the school

classification data, those calculations probably obscure more than they reveal.

The Larger Picture

It should be emphasized that we are not presuming

to second-guess parents and others in the Somali

community regarding the seriousness of this

problem. The situation they are dealing with is

very real. We know that this is frustrating. We

wish that we could provide quick and easy answers

- but we lack basic knowledge about autism, about

how common it really is, and about what causes

it. We recognize how frustrating this is for a

concerned parent - it’s frustrating for us as

well. However, before we can answer the big

questions, it’s important to get the basics

right. That’s what we’re working to do right now.

THE RESPONSE FROM CDC

Here are my questions to CDC officials, and the

answers that were provided by CDC Director’s

Office of Enterprise Communication (OEC):

1) I have been sent a copy of autism prevalence

data generated by the Minnesota Department of

Education (LINK #1). This information, by several

accounts, was given to Dr. Punyko in July. Has

she ever shared this information with anyone at CDC in the past?

Keep in mind that the Minnesota Department of

Education data reflect an educational system

classification that provides information on the

number of students enrolled in special education

programs under an autism eligibility and are not

complete prevalence data. Certainly, it is

concerning for all families if their child is

identified with autism, either for special

education purposes or through a formal diagnosis,

and it is important to determine if one group is

disproportionately affected. In order to

understand if children from Somali families in

Minneapolis are disproportionately affected by

autism, it would be necessary to evaluate the

available data and to determine how complete

these data are and what would be needed to have

the most complete and accurate accounting of

children with autism in the Somali and other

comparison groups of children. It is our

understanding that the MN Department of Health is

first working to verify the education data,

including trying to evaluate birth place and

potential moving districts. This is an important first step.

With respect to your question, to date, CDC

scientists have only provided informal support to

the Minnesota Department of Health and Dr.

Punyko. This has involved answering questions

related to measuring autism prevalence and

helping connect Dr. Punyko with experts in other

states. These informal conversations began

earlier this year when Dr. Punyko contacted CDC

to inquire about methods that could be used to

set up a state-wide autism surveillance or

tracking system in MN based on wanting to get a

better understanding of who is affected with

autism in the state more generally.

To date, Dr. Punyko has shared some of the basic

educational system reporting information from the

Minnesota Department of Education with Dr.

Rice, (Behavioral

Scientist/Epidemiologist) and other scientists

working on developmental disabilities prevalence

projects in CDC’s National Center on Birth

Defects and Developmental Disabilities. More

generally, over the past year, Dr. Rice has

provided information on CDC’s Autism and

Developmental Disabilities Monitoring (ADDM)

Network

(<http://www.cdc.gov/ncbddd/autism/addm.htm>http://www.cdc.gov/ncbddd/autism/add\

m.htm),

which is the CDC autism surveillance and tracking

program. Dr. Punyko has shared that MN is

working on preliminary data analysis and sent a

letter to Dr. Coleen Boyle last week requesting

CDC's input on the report when it was prepared

and providing input on the next steps, including

evaluating whether more formal assistance from CDC would be helpful.

Following a July media report about the number of

Somali children enrolled in autism special

education programs in the Minneapolis public

school system, Dr. Rice and other CDC scientists

have provided information about research

methodology challenges involved in identifying

and measuring autism prevalence, and have

provided suggestions on people to talk with in

other states about conducting autism prevalence

studies. In line with this, Dr. Rice invited Dr.

Punkyo to a November meeting of CDC grantees

involved in autism surveillance. This annual

meeting brings together researchers/principal

investigators from various past and present

CDC-funded sites to share information and

coordinate efforts related to autism measurement and surveillance.

Dr. Rice has also provided information on how

states can seek formal assistance from CDC in

investigating public health issues.

3) It seems logical that Dr. Punyko would have

shared the Somali autism data with authorities at

the CDC. Did she discuss autism numbers among

Somalis in Minnesota with meeting participants

and/or CDC officials at any point during her trip

to Atlanta this week -- either during the

official proceedings, or at some other time during her visit?

State and local educational classification data

are not routinely shared with people at

CDC. There are also no legal or formal

requirements that education system classification

data, even if related to autism or the provision

of educational services to who have been

diagnosed or placed in autism-related programs,

be provided to CDC. To the extent there are

legal or formal reporting requirements for

education data, it is to the Federal Department

of Education. For states, these educational data

are available on the public website

(<http://www.ideadata.org/>www.ideadata.org).

CDC experts may become aware of information or

reports through informal contacts, formal

requests or agreements for technical or

scientific assistance or presentations at meetings or conferences.

Dr. Punyko was invited to attend the ADDM meeting

this week in Atlanta as a way to help connect her

with other state-based investigators who have

been working to determine the prevalence of

autism or on projects designed to help better

define the characteristics of affected

children. She did provide a brief overview of

the initial education data reported in the media

indicating a concern about autism in Somali

children and the general outline of the work that

has been done to follow-up on these concerns in

MN to date. She did not present any additional

data. Dr. Punyko did share that there are

particular challenges with trying to determine

accurately what the prevalence of ASD is in young

Somali children (as well as for any group of

children born to a potentially mobile population) in Minnesota.

4) Does CDC have any comment at all on the MPS provided data?

Dr. Rice and Dr. Marshayln

Yeargin-Allsopp both agree the educational

tracking system information that has been shared

with them merits further assessment. It is

important, for instance, to determine if all

children in need of specialized educational

services are being identified and that identified

children are getting the services they need. It

is our understanding the MN Department of Health

is working within the state to follow-up on these concerns.

5) If it is determined that there is a Somali

autism “cluster” in Minnesota, what happens next?

Is the CDC required by law to investigate

(perhaps because of EPA Superfund requirements)?

Much work will need to be done to determine

actual autism prevalence among children in

Minnesota, children in the Minneapolis and St.

school districts and among Somali

populations in Minneapolis, St. , and

Minnesota. Without a statewide autism

surveillance system, it will be very difficult to

determine whether a group of children or a school

district has an unusually high autism prevalence

rate. It is should be noted that setting up a

statewide autism surveillance system is a complex undertaking.

With respect to formal CDC assistance, such

involvement requires a state or local health

department to send a formal written request. As

requested by Dr. Judy Punyko to date, CDC plans

to provide feedback on the preliminary report by

the MN Department of Health, when available, and to input on needed follow-up.

6) If it is determined that Somali children in

Minnesota do in fact have higher rates of autism

than non-Somali children in Minnesota, and that

they also have higher rates than Somali children

in Somalia, will CDC officially concur that

autism, at least in these cases, must necessarily

have an environmental component?

As noted in #5 above, determining actual autism

prevalence rates, whether in a community, state

or country, requires a valid autism surveillance

system. In this case, such systems do not exist in Minnesota or Somalia.

It is also important to note that even if one has

valid autism prevalence estimates, those

estimates do not provide much information or

insight into the causes of autism. For example,

information about the number of children in a

state who have autism does not tell you very much

about the potential cause, or more likely,

multiple causes ­particularly since children move

in and out of states as well as in and out of

school districts. A higher than expected rate in

a school district may be caused, for instance, by

the availability of a strong program for autistic

children. Also, other children in other groups,

especially young children, may not yet be

identified for special education services under

autism so they are not counted accurately as a comparison group.

In an effort to better understand autism and

autism prevalence, CDC has been working to better

understand how the Autism Spectrum Disorders

(ASDs) affect children in the United States

trough the ADDM Network and Early ASD

Surveillance Projects

(<http://www.cdc.gov/autism>www.cdc.gov/autism).

Our initial efforts have shown that, autism is

being identified more often than in the past and

there are an increasing number of efforts to

identify affected children as early as possible

so that interventions can begin.

In addition, CDC has worked with Autism Speaks to

form the International Autism Epidemiology

network (IAEN)

(<http://www.autismepidemiology.net/>http://www.autismepidemiology.net).

In many other countries, including Somalia,

awareness of autism is in the early stages. We

are not aware of any efforts to measure autism

prevalence in Somalia and have not found any

published baseline data on autism prevalence in

Somali children from Somalia. Without baseline

data, it is not possible to make a comparison of

autism prevalence between Somali children in the

U.S. and Somali children in Somalia.

Similarly, without an established autism tracking

system in Minnesota, it is not possible to

accurately compare rates of autism for Somali

children in Minnesota versus non-Somali children in Minnesota.

Finally, while it is important to understand if

autism is affecting any group of children

disproportionately, it is also important to keep

in mind that there are likely multiple causes of

the autism spectrum of disorders. Most

scientists agree that today’s research will show

that a person’s genetic profile may make them

more or less susceptible to ASDs as a result of

any number of factors such as infections, the

physical environment, chemical exposures, or

psychosocial components. CDC researchers are

currently working on one of the largest U.S.

studies to date, called the Study to Explore

Early Development (SEED). The project is

examining numerous risk factors for autism such

as genetics, environmental exposures, pregnancy

factors, and behavioral factors. CDC is also

supportive of the coordination of research

efforts of the multiple government and

non-government organizations involved in autism

research organized through the Interagency Autism

Coordinating Committee - IACC (<http://iacc.hhs.gov/>http://iacc.hhs.gov).

We hope this information is useful to you in your

effort to report on this complex issue.

Kirby is author of

<http://www.evidenceofharm.com/>Evidence of Harm

and a contributor to Age of Autism.

--------------------------------------------------------

Sheri Nakken, former R.N., MA, Hahnemannian Homeopath

Vaccination Information & Choice Network, Nevada City CA & Wales UK

Vaccines -

http://www.wellwithin1.com/vaccine.htm Vaccine

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