ABC Amber PDF Merger - WordPress.com · jsper (~l~/1 disorder classified within the /-I autism spectrum is Asperger's ^—S ^Syndrome, a milder form of autism that doesn't tend lo

AutismA lather's response

By Susan K. Wittstock

Jon Peterson leads the fightto increase state

funding for the severe disorder that affects his

11-year-old daughter. It doesn't hurt that he

carries more clout than other parents: He's a

member of the Ohio House of Representatives.

Jon and Hannah Peterson at their Delaware home.

" j f /~annah Peterson was 18 months old when she7~j was diagnosed with autism. For her parents, Jon

^—^ •* and Melissa Peterson, the devastating newsmeant that a child who they thought was healthy wouldinstead struggle every day with some of the most basicskills in life-talking, sharing, listening, touching. Theywent from dreaming of a future for their daughter that in-cluded college and marriage to wondering if she wouldbe able to live independently.

"From the very beginning, I went through a grievingprocess. They say you do almost like the loss of a child.You expect the child to be so-called normal," Melissa Pe-terson says. "I had a hard time for about a year, but Jonwas just gung-ho. The more he read, the more interestedhe became. The more I read, the more upset I became.He was more positive."

Over time, it became clear that Hannah's autism wasnot as severe as her parents first feared. She's been diag-nosed as high-functioning, and with therapy and a lot ofsupport she's enjoyed a much more normal childhoodthan many children with autism experience. Hannah isnow an active 11-year-old who enjoys swimming, read-ing and soccer; she's learning to play the flute.

Her father, meanwhile, is fronting the charge to get

more state support for autism-related services. Peterson'sefforts at the Ohio Statehouse pack more punch than theaverage parent: He's in his fourth term as a member ofthe Ohio House of Representatives.

The Delaware Republican's efforts have led to results,including the creation of the Ohio Autism Task Force in2003, In March, after the task force's 22 members released43 recommendations, Peterson helped get four of theminto a tight budget for fiscal years 2006 and 2007. "Passionis how you do it," he says. "You can get a great deal donewithin the legislature if you are focused, if you do yourhomework, if you make a good case to your peers."

"It speaks very well of the respect Representative Pe-terson has and his ability to influence decision makers,"says task force member Mike Armstrong, director of theOffice for Exceptional Children in the Ohio Departmentof Education. "He has made them aware of the presenceof autism in this state,"

Peterson has found his fellow legislators-Republicansand Democrats-can agree that autism is a pressing issue."I don't think there's any one of my colleagues in theHouse or the Senate who have not had constituentscome to them asking for improved services for autism.They understand the need," Peterson says. "But they

Columbus Monthly • SEPTEMBER 2 O O 5 79

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have issues that are more important tothem and that they're focused on, so ittook, I think, someone in the legislaturewho had a direct connection to really getthe hall rolling,"

/" V he Feterson family's experience/ with autism is becoming a more

1w' common occurrence. Dependingon who is counting, as many as one inevery 116 or 250 children in the UnitedStates is born with the developmental dis-order. According to the Ohio Departmentof Education, the number of Ohioans ages3 to 21 diagnosed with autism has risen by22 percent in me last year.

"But they have issues that

are more important to

them and that they're

focused on, so it took,

I think, someone in the

legislature who nad a

direct connection to really

get the hall rolling."

"We're not sure if it is an increase in ac-tual cases or in diagnosis, although in gener-al there is some understanding that there isan increase in prevalence," says psycholo-gistjacquie Wynn, head of the Comprehen-sive Autism Center at Children's Hospital.

Autism is a severe development disor-der, Wynn says, because it affects so manyareas of functionality. Symptoms of autisminclude avoidance of eye contact, aversionto sensory stimulation, noni magi nativeplay and refusal to participate in family ac-tivities. "On top of having difficult)' in lan-guage and social skills, there also is thepresence of repetitive behavior, rigid prac-tices which can make the challenge ofeveryday life overwhelming," she says.

The cause of autism isn't known, nor isit understood why some individuals withthe disorder are high functioning, as inHannah's case, while others are drasticallyaffected. Researchers are studying possiblegenetic and environmental factors, includ-ing the effects of mercury contained invaccines. But Wynn says no one has yetdiscovered conclusive evidence provingany one factor as the cause.

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It's also a difficult disorder to diagnose.Roughly 50 percent of amis tic children ap-pear to he developing normally until aboutage 1, when they may begin to lose skills."There's no genetic test or blood test. Youhave to meet with the child and talk withthe family about the child's history andlook for a clustering of me symptoms,"Wynn says.

There is no cure, but Wynn says inten-sive and structured therapy, preferably re-inforced at school, home and anywhereelse the child spends time, can affect posi-tively the autistic child's productivity andhappiness. "Intensive behavioral interven-tion is very effective. Establishing clear ex-pectations, a predictable pattern of events,clear consequences to behavior, lots offeedback, and step-by-step instruction areall good strategies," says Wynn, who notesthat individuals with autism arc intelligentand have good visual and spatial skills."You tailor what you do to each child'sneeds. We get a range of outcomes, butwe're able to see advancement for eachchild."

The earlier the intervention, the better."We are very blessed in Delaware County,"Peterson says of Hannah's educational op-portunities. "We had her immediately en-rolled in Hickory Knoll school, which is aschool for those with developmental dis-abilities. At the age of 21 months she wasengaged in the process of receiving behav-ioral intervention. It's hard to quantity howmuch of her success is attributed to that, butthose in the field say they think that earlydiagnosis, and then acting on that diagno-sis, is critically important."

After two years at Hickory Knoll, Han-nah entered regular kindergarten and hassince been mainstreamed in the DelawareCity Schools' special-education program.Her proficiency test scores show she's stilla bit less than proficient in reading andwriting, he says, but in math and scienceshe tested well above average. "She's doingvery well," he says.

Peterson recognizes that many parentsin Ohio aren't so lucky.

There really is a difference betweenservices that are ottered in different partsof the state," he says. "The quality of ser-vices shouldn't be dictated by the countyyou are born in."

Ithough many people in Ohiorealized thai autism was becom-ing more prevalent, it wasn't

until the Ohio Autism Task Force wasformed that anyone sought to analyze thedisorder as a statewide issue.

The committee-consisting of legisla-tors, parents, educators, autism experts andprofessionals, and an autistic adult-inittallystarted with monthly meetings in Colum-bus. "We were receiving some very mean-

82 Columbus Monthly • S E PTE M BE R 2 OO 5



jsper(~l~/1 disorder classified within the

/-I autism spectrum is Asperger's^—S ^Syndrome, a milder form of

autism that doesn't tend lo present it-self until a child is in elementaryschool. 'They've probably gone tokindergarten and done well academi-cally and arc able lo speak." saysJacquie Wynn of Children's Hospital."But they're nol able to make friends.They may appear odd. They don'tshare interests with other kids,"

Like children with autism, kidswith Asperger's exhibit social deficitsand engage in repetitive and ritualisticbehaviors. "But they have fewer im-pairments in language and cognitiveand adaptive skills." Wynn says.

Children with Asperger's also of-ten form an obsession with a particularinterest—say, dinosaurs—to the ex-clusion of anything else. It takes timeto sort out whether a child has a normalintense interest in a subject, or the ex-treme interest of a child with Asperg-

er's. "'It might seem like a personalityquirk at firs!" Wynn says. Typical chil-dren tend to share their interest withother people, but a child with Asperg-er's will not. "'If you interfere, theymight have a meltdown," Wynn says.

Language skills, while less impairedthan with autism, also are affected. "Asthe kids get older, problems come up.They don't understand idioms or fig-ures of speech. There can be an adultquality to their speech," she says.

It can be tough to diagnose. "Somekids wilh Asperger's have enough be-havioral problems to get upset andthrow tantrums, but others just slip by."Wynn says. "It all starts with the pedia-trician giving a good screening to de-termine if there is a developmentalproblem."

If a pediatrician feels (here is cause,the child can be referred for additionaltests to a team of experts, includingspeech pathologists. developmentalpediatricians and psychologists.

ingful input, but something was missing,"Peterson says. "And what was missing wasthe input from those who live with this dis-ability daily. So we decided to have eightregional forums that would complement,not displace, our monthly meetings."

The 43 final recommendations call fora wide scope of sen'ices, including creatingstandardized methods for screening anddiagnosis of autism; a confidential state-wide registry of Ohio individuals withautism, and a higher education-level teach-ing credential for autism. It also urged pre-venting insurers from excluding coverageto individuals with autism, and that stateand federal government fully fund special-education programs and services.

The four task force recommendationsthat made it into the Ohio budget includechanges involving Medicaid; the creationof the Ohio Center for Autism and LowIncidence (OCAL1); an increase fromabout $15 million to $19 million for statefunding for catastrophic special-educationcosts, and a hike in the autism scholarship,from $15,000 10 520,000, that helps par-ents get their child into a private school forspecial services.

Peterson thinks OCALI may be themost important recommendation the taskforce introduced. Located on the campusof the Ohio State School for the Blind, it's

GRANT

Columbus Monthly • S E P T E M B E R 2 O O 5 S3



staffed by experts in autism who will helpparents and professionals make informeddecisions. "We think it would be very ad-vantageous to have one central placewhere individuals will be referred whenthere's a diagnosis," he says. "Statewide, nomatter where you are, they will refer youto services in your area."

When Hannah was first diagnosed, Pe-terson says it was hard to find assistance."You get mad because you feel impotent toseek services because you don't knowwhere they are," he says. And profession-als will benefit since the center will gatherinformation on local and national best-practices for the treatment of autism.

"I am hopeful that in the decades tocome it will fulfill what our vision was and itbecomes a central storehouse for knowl-edge regarding services available to individ-uals in Ohio with autism," Peterson says.

Meanwhile, Peterson is working withthe Autism Society of Ohio to establishpriorities and a timeline for tackling theremaining recommendations, some ofwhich carry a big price tag. "We know thatthis is a 10-year process at a minimum," hesays. "To do it right we are doing itthoughtfully, thoroughly, addressing it in acomprehensive way. Ultimately, it will allbe done, but it will take some time."

Peterson has had a lot of help in push-

ing the recommendations through the leg-islative channels. He credits one of hisconstituents in particular: Westerville resi-dent Doug Krinsky, who first contactedPeterson in 2002, shortly after his 3-year-old son was diagnosed with autism. Krin-sky repeatedly encouraged Peterson tomove forward on autism issues.

In fact, Krinsky and Peterson came upwith the idea for the task force. "I was ex-tremely motivated because nothing wasgoing on in the state," Krinsky says. "Hewas looking for someone outside of poli-tics to work with him."

"You need to develop relationships withyour legislators," says Peterson. "It shouldn'tjust be a one-time thing. That's how it hap-pened with Doug Krinsky. I can't overesti-mate just how important he was, because Ihad the passion, but he kept me focused,kept me harnessed to the plow."

"Jon is a member of the ruling Republi-can party, he's ranked pretty high in theHouse and can get things done. He's a do-er, not a talker," Krinsky says. "He's thepied piper, leading us and giving us direc-tion and, so far, it's been terrific."

In the past, constituents in the society'snine chapters across the state approachedlegislators individually, "When Jon Peter-son came on the scene and people knewhe had a daughter, everybody approached

him, but all with different messages,"Autism Society of Ohio president Barb Ya-vorcik says, "We met with him and weretold, Talk with one voice.'"

Yavorcik, who estimates there may beupward of 10,000 individuals in the statewho are tapped into the autism network, isready for the challenge. "If we could geteven 1 percent of them to contact theirlegislators, that's powerful," she says. "Let'sface it. Peterson] can't do it all. He can'tintroduce every piece of legislation andhe's term-limited."

Assuming he is reelected next year, Pe-terson will be forced to leave the OhioHouse in 2008. To prepare for his post-po-litical career, he is taking classes at theMethodist Theological School in Ohio inDelaware. "I'm gravitating toward a master'sin special ministries, so I can continue mywork with special-needs children," he says

He relies on the gospel for inspiration."I think it's pretty clear what we're com-manded to do," he says. "We're not re-quested. We're not asked. We're demand-ed to help the least among us, and when Ihad this very, very special child in my life,it was only natural that is where my pas-sion would be." •

Susan K. Wittstock is a freelance writer.

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