Jaden Woodall lost his voice when he was two and a half years old.
After a sudden fever, a child who had been developing normally became nonverbal overnight. He showed rigid, fixated behaviors; avoided social contacts; and could not interact smoothly with his peers in the ordinary engagements of childhood.
Jaden had become a victim of regressive autism – one of a spectrum of mental disorders that is drawing increased attention from scientists and clinicians, yet is not always well served by existing treatment resources. He is now nine.
Autism doesn’t just affect its sufferers; it touches whole families. For Jaden’s mother, a Main Line entrepreneur named Terri Matthews, he inspired a cause.
“When Jaden lost his voice, I had to become his voice,” explained Matthews. In fact, she founded a social-service agency to teach afflicted families how to navigate the system and fight to get the help their children need. She was speaking at the grand opening of her new service center at 5548 Chestnut Street in West Philadelphia for her agency, appropriately named Jaden’s Voice, which she founded in 2009.
Her goal is to reach out to the many Philadelphia children of modest means who suffer from this condition. Jaden’s Voice has served 1,300 Philadelphia families since its founding. But Matthews thinks only 4,300 individuals are being served overall, out of at least 28,000 persons who should be served in this city, according to estimates of the federal Centers for Disease Control & Prevention.
Autism families can face huge needs for their loved ones. Many autistic people have language disorders. The worst simply cannot speak; the best (often known as having “Asperger’s syndrome”) can speak well – but still not express their own feelings or interpret other people’s easily. Jokes and plays on words can be hard for them to interpret. “Reading” other people, a skill even the family dog has mastered, can be a painful puzzle for an autistic person.
While many autistic people are intellectually retarded, some are brilliant in logical areas. But they can be easily upset and prone to acting out, liable to step on toes they cannot perceive.
So they can get into trouble – with peers, with teachers, with police.
“A nonverbal child cannot report, ‘Someone hit me,’” Matthews noted. “He cannot negotiate basic safety issues in his peer group.” He is apt to go off instead – which will brand him as the villain, not the victim.
Sometimes autism goes away with age but mostly it does not. However, if early and reliable intervention is given, autistic people will do much better in life. They can be good, productive citizens. Many can look forward to founding families and careers. Their lives can be happy; and their families will suffer less too.
But autism can cause a lot of grief; and treating autism can cost a lot of money.
The bill for speech therapy alone can run to $60,000 a year, Matthews stated. In-home behavioral training can be equally expensive. An Individualized Education Program, which is required by law, will set back the School District a handsome sum.
In sum, almost no Philadelphia families can afford to pay for the full costs of the education of their autistic children. Public resources are essential. But are they enough? And are all children who need them getting them?
Jaden’s Voice says no.
“Most autistic children in Philadelphia are dealing with poverty or modest means,” said Matthews. “Their parents are coping with a lot of other problems.”
Some of these parents are single parents. Some are actually grandparents. Many are not schooled in medical and educational paperwork. Most of them don’t have an extra nickel to invest in extra clinical, educational or legal fees. Most of them have other children to care for and little cash to pay their bills with.
So it falls on the public sector to deliver what it can to treat autism. But it can be hard for a single family to work this system.
That’s where Jaden’s Voice comes in. Its eight staffers reach out to autism families and help them negotiate the Individualized Education Plans that all special-needs students are entitled to under the law – but which many don’t get. IEPs can authorize expensive treatments for autistic kids; but if the family doesn’t know how to push for them, in practice they may be sloughed off by the bureaucracy.
Jaden’s Voice is fortunate in enjoying strong support from Philadelphia’s political class. Usually there is a family story to tell.
Councilman at Large Derek Green’s son Julian is autistic; the Greens turned out in support of Jaden’s Voice. “Sibling training is also needed,” Green emphasized. Julian’s siblings are pressured to defend him from bullying. Green insists that his son does not suffer from a disability, but a difference.
State Rep. Vanessa Lowery Brown (D-W. Phila.), whose son was also learning-challenged (but who is a worker, a husband and a father today), rejoiced to see Jaden’s Voice open an office in her district.
“When I was raising my son, the authorities gave me a menu that did not have all the options,” she said. “We must do better.”
To reach Jaden’s Voice, call 1 (800) 825-8950.