Life With Severe Autism

By Amy S.F. Lutz

“I see only hands,” Amy S. F. Lutz writes. “One wrapped over Jonah’s fist, another under his jaw to keep him from biting, another untangling my hair from his fingers, one intercepting before he could yank another necklace off my neck. … I never had enough hands.”

The author is trying to safely defuse her severely autistic son, in the midst of one of the rages that once consumed him. Jonah, now 21, is not “quirky.” Nor is he an “indigo” child possessed of extraordinary and mysterious abilities. He is an affectionate young man who loves his parents, his four younger siblings, pretzels with cheese sauce and the kind of roller coaster rides that make the rest of us hurl. He also needs to be watched every minute of every day. Left to his own devices he will run away, or perhaps flush his iPad down the toilet when it needs to be recharged. He has few words. Though he can write and “decode” text, he doesn’t really comprehend. He required almost a year of hospitalization for his violent outbursts, and maintenance electroconvulsive therapy to quell his rapidly cycling bipolar disorder. When he was younger he might have tried to attack you, or himself. His family loves him deeply.

It’s been three-and-a-half years since the state shuttered the Youngstown Developmental Center, forcing local families to seek essential services for the disabled and mentally ill that were sometimes hours away.

Mahoning County officials earlier this month announced the 35-acre campus’ return as the Mahoning Valley Campus of Care, one of the only sites in the state that could offer comprehensive, wraparound services. It’s set to reopen by the end of the year.

The several area nonprofits set to be the campus’ new tenants are now renovating or preparing their own spaces. The county will assist with the heavy lifting, but “it’s really not major,” said Commissioner Carol Rimedio-Righetti.

“It’s just a tale of cooperation among those organizations,” said Duane Piccirilli, executive director of the Mahoning County Mental Health and Recovery Board, which has overseen coordination for the new campus.

A new care facility is being built on the site of the old Valley Springs Residential Care and Pleasant Springs Memory Care and Assisted Living property on Stateline Road.EastOk Cottages will be an intermediate care facility for individuals with intellectual disabilities, according to Kimberly Green, Diakonos Group chief operating officer.

Unlike a traditional nursing home, EastOk will cater to individuals 18 and older who have intellectual disabilities only, Green said.

“We’re extremely excited to be in the area and we cannot wait to meet the people and staff who will be our family,” Green said.

The main building will house the first two cottages which will be separated by a firewall. The first cottage is complete and ready for use. It will have five double occupancy rooms and six single occupancy rooms.

The facility wants to move three to four people in the first cottage so the state can come in and inspect the facility and see how care is given, Green said. If EastOk passes the inspection, it will be cleared by the state to open, Green said.

EastOk will consist of four cottages that will house 16 each in a family style environment. EastOk will start out with 15-20 employees and as time goes on they will go up to about 50 or 60, Green said.

Adults with autism are up to four times more likely than others to have chronic physical health conditions, new research suggests, and lifestyle factors don’t appear to be the reason why.

On average, adults on the spectrum have low blood pressure, arrhythmias, asthma, prediabetes and other conditions at rates that are 1.5 to 4.3 times higher. The increased occurrence does not appear to be tied to typical risk factors like smoking, alcohol use or a person’s body mass index, according to findings published recently in the journal Autism.

The study looked at 1,156 adults with autism and 1,212 without the developmental disorder who took part in an anonymous, online survey.

“This is a first step in better understanding why autistic individuals are so much more likely to have chronic physical health problems,” said Elizabeth Weir, a graduate student at the University of Cambridge who led the study.