7-year-old Carson Bard, who has autism and several other congenital problems, smiles as he studies his homework with his mom Denise. Denise has been enrolled in a program for military wives that provides advocates as a stand-in for their spouse in important matters like doctors visits and dealing with the children's school. By Lilia Kang
For a decade, the scientific community has made progress in the identification of potential genetic and environmental causes of autism. Myriad problems remain unsolved and untouched.
Many autistic children are medically fragile. They endure physical suffering from gut irregularity (reflux, diarrhea, pain, constipation), insomnia, seizures, adverse reactions to medications and significant allergies.
For example, a boy named Colin suffers from periods of constipation that force him to sip broth instead of eating ordinary table food. His allergy triggers aggressive behaviors. Doctors attempt to help him by ordering tests — but nothing helps. Medications are either ineffective or come with side effects.
Another child, Emily, battles reflux and diarrhea. She clenches her fists, grinds her teeth and bangs her head against the wall in pain. Likewise, no medicine has helped her. A third child, Jamie, takes a cocktail of medications, yet remains in pain that makes him irritable and self-injurious, biting his hands to open wounds.
Effective treatment for these chronic disorders in autism still isn’t available. It isn’t only autism these children struggle with, but physical ailments and side effects of medications, as well. In these children, behavioral problems might be caused by medical problems. Doctors don’t yet understand these children.
What about those who have made it through childhood — autistic adults — who can’t control their behavior? Who is left to care for them? Frail, aging parents, or siblings, who can do little to control aggressive tantrums?
“I have to protect myself from my son,” said one distressed mother. Another called police to handcuff his daughter as she lashed out violently and nearly broke her fingers.
The behavior of some autistic adults is hard to contain — even some hospitals won’t accept adults while they are raging. Instead, these adults are transferred to a psychiatric facility, where they are sedated to force sleep.
Few physicians care for autistic individuals. Even fewer are the facilities equipped to handle them. State budget cuts leave short-staffed the few institutions that can handle adults with autism.
What can be done?
Much research and funding has been put toward discovering the causes of autism. It’s a search that undoubtedly will take a great deal more time, money and energy. Meanwhile, families with members who are autistic are fighting medical fragility, unable to find effective treatments for their loved ones.
We must shift the focus of our research from finding a cause to managing the medical disorders and planning for long-term care. The autism community is aging and expanding. We must acknowledge the suffering of families with autism, even while we continue to learn its origins. Private and public funds need to be channeled toward urgent research on medical disorders, treatment and long-term care. Provide incentives to the professionals willing to care for them. Create facilities to properly treat, educate and care for autistic individuals.
Families are in emotional crisis as they scramble to find footing. The numbers are growing and, each year, more people are diagnosed with autism. We must act now and care for those who are already living with autism.
Lilia Kang, a freshman at Communication High School in Wall, has interacted with autistic children for four years and performed autism research at the University of Medicine and Dentistry of New Jersey.