More needs to be done to increase autism awareness
By Todd Etshman
When Lawana Jones was invited to the Obama White House in 2011, for the first ever World Autism Day Conference, the Rochester area disability rights advocate and president of the Autism Council thought it was a prank.
It wasn’t, however. Jones has been tirelessly working to increase autism awareness in the community and training medical and educational personnel to assist those with autism for more than 25 years.
Awards for her tireless volunteer effort are common including being the 2020 Woman of Distinction for the 56th Senate District.
The work of Jones and the Autism Council
Jones has become the go-to person in Rochester for autism assistance, advocacy, education and support. She founded the Autism Council to help support the 85,000 to 90,000 people in the metro area who she estimates have it. The council strives to give everyone afflicted with autism the same opportunities to succeed that others have.
In addition to volunteering countless hours to autism and mental health awareness and response, Jones is finishing her master’s degree in education at Nazareth College and working full time in IT. Former state Sen. Joseph Robach encouraged her to run for office but if anything she said she may have seen enough of politics from the sidelines and might prefer an administrative role in government instead.
“I went down this path because I had to,” she said referring to her parental experience with her autistic daughter, Marsche, 31, who can’t converse but is a musical genius. There was no one to really help her and she doesn’t want others to feel there is nowhere to turn.
Today, parents of children with autism call her to find out what towns and schools do the best job for students with autism. Unfortunately, she said, it’s not the Rochester City School District.
As a certified autism trainer, Jones provides training to special education teachers who are required to have three hours of autism education training.
In addition, Jones provides training to those who are likely to come into contact with autistic persons such as first responders, law enforcement, nurses and fire departments.
She singles out Irondequoit as an autism-friendly town that sought her assistance in training law enforcement personnel and town officials. Webster, Greece and Gates town representatives have worked with Jones and The Autism Council, too.
The council and its volunteer staff works to eliminate the stigma associated with autism by creating viable opportunities for inclusion, employment and social activities through disability respite support services and advocacy for those on the autism spectrum.
In 2015, Jones began a yearly job fair for those with autism. Like most everything in the pandemic, it’s virtual this year.
Many on the autism spectrum are particularly good at software development and have mathematical skills, something Microsoft recognized and developed a job hiring program for.
Having an extraordinary talent is not unusual for those with autism, but their perception of the world around them is noticeably different. They have trouble expressing their feelings and may exhibit odd or negative behavior.
What autism is
“It’s a neuro developmental disorder,” she explained. “It affects the development of a child’s brain and manifests itself in social interaction, communications and behavior.”
The lifetime affliction is typically found medically at 18 months or older at child wellness visits. The age of diagnosis is later for Latino and African American children.
The needs of children with autism are very different than normal students, Jones explained. And, their parents may not be able to help them if they aren’t committed to learning what it takes.
We can do better
Jones grew up in the city but went to Pittsford as part of an urban transfer program. In the 1980s children with autism were much less understood, kept in separate areas of school and not included in all activities.
Today, she said, “We’ve done a good job of integrating them but not of supporting them. We are better than we were with regard to recognizing it today, but we have to dig deeper.”
We can’t have Trevyan Rowe happen again, she said of the unfortunate incident in which a young man with special needs lost his life after wandering away from a city school that didn’t recognize he was gone.
Switching to remote learning in the COVID-19 era is particularly bad for autistic children who benefit from a predictable schedule and being with friends.
Jones said there is no special protocol for students with autism who must log on to their computers like everyone else for remote learning that suits them even less than normal students. Parts of their education have to be done in person such as speech and language and occupational therapy.
“We’re missing out on a big opportunity to show people we know how to do this right,” Jones said. “There is so much more that could be done here but nobody cares enough to put up the funding. They want to say Rochester is rich in mental health and autism services, but people aren’t connected to those services.”
For more information on Lawana Jones and the Autism Council, go to www.theautismcouncil.org.
Photo: Lawana Jones leads Autism Council of Rochester.