ATT: Staten Island, NY Families

[Guest guest]

Autism study threatened by poor turnout

Researchers need another 100 families to get accurate figures on disorder's

prevalence here

Wednesday, December 26, 2001

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By DIANA YATES

ADVANCE STAFF WRITER

A study to determine if autism is more common on Staten Island than

elsewhere in the country is threatened by a poor turnout of participants.

Launched early this year with funding from the non-profit National

Association for Autism Research and then-City Councilman Fiala, the

study could validate a belief long held by parents and professionals that

autism is unusually prevalent on the Island. But it will not be conclusive

unless many more families with autistic children get involved.

" This is a study that was undertaken at parent request, " said Dr. Ira Cohen

of the Institute for Basic Research in Developmental Disabilities (IBR),

Willowbrook, who is directing the research.

" If we can't get a good turnout, we're not going to have an accurate

estimate and our study won't be valid, " said Dr. Cohen, head of the division

of behavioral assessment and research. " That would be a shame because people

have been asking for the numbers here and we won't be able to provide an

answer. "

Scores of autistic children are on waiting lists for local services, but so

far only 62 families signed on to participate in the research. Dr. Cohen

needs a minimum of 170 participants to generate valid results.

Staten Island hosts two autism foundations, dozens of local organizations

provide services to autistic kids and thousands attend an annual autism walk

and fair in Clove Lakes Park.

Dr. Cohen and assistant research scientist Tina Rovito have tapped them all.

They've made presentations to local PTAs, put articles in newsletters to

parents of autistic kids, handed out fliers at local autism events, sent

letters to parents of autistic children and contacted the Autism Foundation

of New York and the GRACE (Getting Resources for Autistic Children's

Equality) Foundation, both of which are headquartered on Staten Island.

But only about a third of the needed participants have enrolled in the

research, and the study will end next summer.

Dr. Cohen said he thinks that many parents may just be busy. The daily

demands of caring for an autistic child can make even minimal commitments

difficult.

He stressed that participation in the study requires less than three hours

of a family's time. The parents are interviewed for a maximum of two hours,

and the child comes in for less than an hour of observation. The interview

can be conducted in the participants' home, or the Institute will provide

transportation. The child must go to the Institute for observation, however.

" We'll do whatever we can to make the process easier, but we do need to see

the child at least once, " said Dr. Cohen.

The two-pronged approach, involving both the parents and the child, gives

the most reliable data, said Dr. Cohen. The parent interviews and

observation of the child have become " the gold standard for autism

diagnosis, " he said.

Dr. Cohen is looking for families with an autistic child aged six to 12. The

child must have been born on Staten Island and be currently residing here.

The research will be confidential, said Dr. Cohen. No names of participants

will be published in the reports.

Should the study fail to engage enough participants, the undercount could

threaten funding for local autism services. It would also undercut arguments

that a disproportionate number of autistic children are born on the Island.

Reported cases of autism are on the rise in New York state, in the nation

and elsewhere in the world. Researchers do not know if the increase is due

to the broadening definition of autism, growing awareness and better

diagnosis, or an actual rise in the number of autistic children.

Those who work with autistic children and adults on Staten Island say the

numbers here are increasing faster than they can expand their services. Some

programs, such as the Eden II Institute, have hundreds of families on

waiting lists. Many believe the increase is higher here than in other

communities.

" Parents were concerned that the numbers of [autistic] children here were

too high. We've heard this not only from parents but from professionals as

well, " said Dr. Cohen. " We don't know. We see a lot of cases here but New

Jersey and California have seen a lot of cases. There have been lots of

cases in Sweden and France and Japan. Are they higher here? There's one way

to find out. We need accurate numbers and uniform testing, " he said.

Those interested in participating in the study and those who want more

information can contact Ms. Rovito at 494-5355 or Dr. Cohen at 494-5181.