Early screenings, ID cards provide more options for autism community

Sept. 06--ALBANY -- Two pieces of legislation were signed into law last week to create better services for the autism community, socially and medically.

The first bill, sponsored by Assemblyman Angelo L. Santabarbara and Sen. Robert G. Ortt, will mandate earlier screening for autism spectrum disorder.

Of the 1 in 59 children nationwide with autism spectrum disorder, most are not diagnosed until 3 years-old or later due to a lack of consistent screening practices at pediatric offices nationwide. However, it's possible to detect the disorder as early as 18 months before symptoms even begin, according to the American Academy of Pediatrics. After the academy published practice guidelines recommending screening at the 18- and 24-month marks earlier this year, strides were made by the state to put them into effect.

Mr. Santabarbara, who has a 16-year-old son with autism, has been vocal in his time as an assemblyman about the importance of early screening. The first years of a child's life are critical for speech, speech therapy and language development, he said, so without the proper services and screenings, how the child communicates verbally can be severely impacted.

The second -- and more controversial -- bill, sponsored by Mr. Santabarbara and Sen. Pamela Helming, will create an optional, standardized identification card for individuals with a developmental disability. The card would include information about the person's diagnosis, as well as an emergency contact number and address.

Ideally, the ID card will be able to help vulnerable individuals convey important information to first responders in the event of an emergency or during an interaction with law enforcement.

Mr. Santabarbara noted an incident in Arizona last year, where a police officer forcibly restrained an autistic 14-year-old playing with a piece of string in a public park. The officer slammed him against a tree and pinned him to the ground, believing his repetitive behavior was a sign of drug use. It actually was known in the autism community as self-stimulation -- or "stimming" -- a common behavior involving repetitive movements or sounds that help individuals with developmental disorders cope with their surroundings.

The ID bill, Mr. Santabarbara said, will work with an earlier bill he sponsored to create a statewide program to train police officers and first responders in recognizing the signs of autism and how to properly respond.

Jennifer L. Sibley, a family peer advocate for the Northern Regional Center for Independent Living, said she feels the ID bill is unnecessary. As a mother of an autistic son, as well as an influence in the north country's autism community, she said the situation is not being handled correctly.

"I can't see what purpose it would serve other than to unnecessarily identify people with disabilities that don't need to be identified as such," she said. "I wonder why the parents are the ones who have to be responsible for defining their kids by their disability."

Mrs. Sibley added she currently has a SafeChild ID card, which is available to any child. Operation SafeChild of New York gives parents and guardians the option of having a free ID card with the child's photo, birthdate, hair and eye color, age, height and weight, gender and their fingerprints. There is also an option on the back of the card to add notes about your child.

On her son's card, Mrs. Sibley said she wrote down he may not answer questions in an emergency situation.

Even with the earlier bill to train law enforcement, Mrs. Sibley said the responsibility for these situations should not be put back on the parents.

"My son loves carrying around sticks, Legos and toy cars, and the way he holds them sometimes in a high-stress situation, is a police officer going to say 'Oh, he has a gun?' I don't know. I just don't know," she said.

For other parents, the ID card has a different purpose.

Kathy E. Robertson, a volunteer at the Northern New York Autism Foundation, said she thinks the new ID card could be ideal for adults with developmental disabilities.

Mrs. Robertson said many adults with developmental disorders, like her own daughter, do not have a driver's license, the most common form of photo identification. While passports are an option, or a non-driver's license issued by the DMV, those offices can be challenging for them to navigate.

"I haven't taken my daughter to the DMV because it's crowded and a long wait, which is just not an ideal situation for people with disabilities," she said.

While a person with a developmental disability may not use their picture ID card often, Mrs. Robertson said this at least creates a user-friendly opportunity for them.

"I think there are parents or individuals who wouldn't want it because they don't want to be identified as having an issue, but it's not mandatory so I don't see the problem with it," Mrs. Robertson said.

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