Two sets of criteria for autism diagnosis create conflict

Although Missouri's population of autistic children has grown by more than 800 percent in the past 13 years, large numbers of students aren't identified as autistic in local school districts.

Ten out of 600 special education students in Jackson and nine out of 700 special education students in Cape Girardeau have the educational label of autistic. That averages out to one of every 450 school-age children being diagnosed by those school districts as autistic.

But local parents say that doesn't exclude the presence of other autistic children in Cape Girardeau and Jackson. A child can be diagnosed as autistic by a doctor but may not be considered autistic under the schools' criteria.

The distinction between a medical diagnosis and an educational diagnosis has created conflict for several local families with autistic children.

Physicians use a set of criteria contained in the Diagnostic and Statistical Manual of Mental Disorders to determine whether a child is autistic. Missouri school districts use criteria laid out by the Department of Elementary and Secondary Education.

The two sets of criteria are comparable but with one distinct difference when it comes to acquiring special education services through a school district.

"Even though the criteria are similar in those definitions, the difference is the impact the condition has on educational progress," said Dr. Betty Chong, assistant superintendent in the Cape Girardeau School District.

If a child has been diagnosed by a physician as autistic, but school officials don't believe the condition will impact his or her education, then the district will not provide special services to that child.

It took Karen Manning of Perryville, Mo., more than two years to get the proper diagnosis for her son. Finally in 2001, a St. Louis neurologist determined that 4-year-old Darin was autistic.

But when she took that diagnosis to her school district, Manning said administrators denied it was accurate and refused to implement the applied behavior analysis treatment plan she proposed.

Perryville school officials declined to comment on the issue, citing student confidentiality concerns.

After nine months of arguments, Manning said, the school district agreed to provide the treatment she had requested.

"But there's still a lack of knowledge about autism, even in the school district," she said. "Other families are still facing that same battle, and there's a lot of resistance."

First Steps, a program operated by the federal government, pays for special education treatments up to age 3. After that, the local school district takes on the responsibility.

Local school districts rarely assign a specific diagnosis to children between the ages of 3 and 5, instead using the general label of "young child with developmental delay."

Before entering kindergarten, special education children are evaluated by a team of special education teachers, psychometric examiners, speech/language therapists, and occupational and physical therapists who may at that time assign a more specific label, such as autism.

After that, a team of educators as well as the parents develop an individual education plan known as an IEP. The IEP identifies goals for each special education child, highlights strengths and weaknesses and lists parent concerns.

Under the Individuals with Disabilities Education Act, a federal law passed in 1994, a student's teacher is ultimately responsible for choosing a method of treatment, but school officials in Jackson and Cape Girardeau say parents play a role in that decision.

Dr. David Crowe, a Cape Girardeau orthodontist whose son, Taylor, was diagnosed as autistic in 1985, thinks many parents don't understand that they're partners with the school when it comes to their child's IEP.

"Parents feel like the school will do what's best for the child, but no one knows that child better than a parent," Crowe said. "If parents aren't involved and aren't saying the child needs more, the school is not going to give it to them."

If parents are unhappy with their child's IEP, they have due process under Individuals with Disabilities Education Act, which gives them the right to a special trial on the issue. However, lawyer's fees prevent many families from fighting districts that have deeper pockets.

Leighanne Collier, a former Southeast Missouri parent who moved to Auburn, Maine, to get the treatment she desired for her autistic son, said school officials in Charleston, Mo., told her the district would not provide certain services because of money.

"As soon as they find out the diagnosis is autism, they start preparing for how to deny services," Collier said.

cclark@semissourian.com

335-6611, extension 128

Physicians use criteria from the Diagnostic and Statistical Manual of Mental Disorders to diagnose autism, while school officials use criteria from the Missouri Department of Elementary and Secondary Education. Here's a look at how the two sets of criteria compare.

DSM criteriaA child must exhibit at least six of the following symptoms:

Marked impairment in the use of eye contact, facial expression, body posture, gestures

Failure to develop peer relationships

Doesn't seek to share enjoyment, interests or achievements with other people

A lack of social or emotional reciprocity

A delay in or total lack of spoken language

Impairment in ability to initiate or sustain a conversation

Repetitive use of language

Lack of make-believe play or social imitation play

Preoccupied with one or more restricted pattern of interest that is abnormally intense or focused

Inflexible to routines or rituals

Repetitive motor mannerism, such as hand flapping or twisting

Preoccupied with parts of objects

A child must exhibit delays in at least one of these areas prior to age 3:

Social interaction

Language

Symbolic or imaginative play

School district criteria

A child must exhibit disturbance in one or more of these areas:

Abnormalities that extend beyond speech to many aspects of communication

Absence of communicative language

Characteristics involving both deviance and delay

Deficits in the capacity to use language for social communication

A child must exhibit disturbance in one or more of these areas:

Abnormalities relating to people, events or objects

Capacity to form relationships with people

Absent or delayed use of objects in age-appropriate way

Rigid about routines

Source: The Diagnostic and Statistical Manual for Mental Retardation and the Missouri Department of Elementary and Secondary Education