Autism is the fastest growing developmental disability in the US. The popular children’s television series Sesame Street is looking to remove the stigma attached to the disorder.
Kami Kondik stared at the door of her North Carolina home. It was wide open. And her four-year-old son, Albert, had vanished. She frantically searched the house but there was no trace of him.
Kami, who was six months pregnant at the time, called the police and then left the house to look for Albert.
“When you lose sight of the head that you know from every angle you want to break down and cry,” she recalls.
“I was sick to my stomach. It felt like my heart was beating out of my chest … I was scared to death.”
Although the family had installed multiple locks on their doors and sensory alarms, Albert, who is autistic, had recently become adept at escaping. Trying to manage that had become a daily fact of life for Kami, but it was one she feared others wouldn’t understand.
She eventually found Albert three or four blocks away from their home, walking towards a neighbourhood park, but the police, unaware of her son’s autism, accused her of child neglect.
“[I felt] insulted, like I was unfit to actually be his mum,” she says.
That was in 2013.
A year earlier, when he was three, Albert was diagnosed with severe verbal autism, developmental delay, attention deficit hyperactivity disorder (ADHD), and sensory processing disorder.
“It’s kind of a blow to the chest,” says Kami of the diagnoses. “It’s like all the air just got sucked out of your body.”
Everything she thought she knew about parenting went out the window.
“He went from walking and talking to regressing down to not being able to communicate – [speaking] gibberish – and not remembering how to stand or how to really speak.”
Albert would sit on the floor and spin in circles. He would scream at nothing. He would play with his faeces, smearing it on the walls or trying to eat it.
Since his diagnosis, Albert has been given a range of medication including Adderall, antipsychotics, antidepressants, and sleep supplements. When he took Trazodone, an antidepressant used to treat anxiety disorders, alongside other medications, he would self-harm, sometimes stabbing himself with a pencil.
Concerned about his tendency to walk on the tips of his toes, doctors gave him a brace for his feet and legs.
Albert’s been through intensive physical, occupational, speech and aqua therapy. He’s even been through food therapy because the texture of certain foods can trigger a meltdown.
Something as seemingly insignificant as the fluorescent lights at a grocery store can trigger an outburst during which Albert will scream or bang his head against a wall. At times he’ll bite and hit himself or others. Kami recalls an occasion when, out of nowhere, he headbutted her, cracking her front teeth and requiring her to have $6,000 worth of dental work.
Caring for Albert is Kami’s full-time job, and it’s one that at times can be gruelling.
But life got easier for the family when Kami learned of a home-based programme for children with special needs. The Exceptional Family Member Program (EFMP) provided a respite care worker for between 20 to 40 hours a month to work with Albert in the family’s home. It was offered by her husband, Mark’s, employer: the United States Army.
Mark works in telecommunications for the army and has been deployed twice to Iraq and twice to Afghanistan, spending long periods of time away from his family.
The family’s respite care worker, Tiki – who requested that her last name not be used in this article – spends about 24 hours a month with Albert, playing or going for walks.
The family says Albert has blossomed under her care.
“He’s become more interactive,” Mark explains. “Instead of [being] antisocial, he’s being more social or responsive … It’s really helping him; his hand-eye coordination, his ability to keep himself calm in public. He’s improving over time.”
But the family’s time with Tiki will soon come to an end. They received a letter from the Department of Defense a couple of months ago informing them that they will no longer qualify for EFMP respite care owing to federal budget cuts introduced under the Obama administration.
Of the 1,200 army families who use the programme across the US, 663 of them, including the Kondiks, will lose their coverage at the end of June.
The programme will cut its coverage for military children – and spouses – with behavioural conditions such as autism. Children with conditions such as Down syndrome, fibromyalgia, multiple sclerosis, neurological disorders and epilepsy will continue to qualify for the programme.
Fort Bragg, the most populous army base in the US, housing roughly 52,000 active-duty soldiers, has the most families using EFMP’s respite programme. There are 62 of them, and of those, 39 will be cut off.
“It is a difficult situation for all of us,” explains Trisha Newton, the programme manager for the EFMP at Fort Bragg.
She says the affected families could tap into other resources, noting that the army provides non-clinical case managers to help special needs families to identify alternative resources or community programmes that could fill the gap.
Lorraine Weber, 39, is also a military spouse in the Fort Bragg area whose family depends on the EFMP respite care. Her son, Robbie, is autistic.
“Autism is difficult,” Lorraine, who is originally from Long Island, New York, explains. “It’s like looking through a kaleidoscope: There’s many different colours but it’s always changing. It’s like having a thousand-piece puzzle in front of you.”
Robbie, who is obsessed with dinosaurs and Lego, has been expelled from four schools because teachers have not been able to handle his condition. Lorraine says the EFMP programme delivers some normality to her life – and her marriage.
“When I didn’t have it, there were times I felt like I was drowning,” she says.
“We get this one little break here and there, to just forget about all of the life stresses and just enjoy a movie, [have] a nice dinner [and the] time to reconnect. If it’s canned, well, I just think back to [the] time when we didn’t have it and how difficult it was. It puts a strain on your marriage [and] it strains you yourself.”
Lorraine received her real estate broker’s licence last month. It’s a feat she’s proud of, and one she says took seven months of studying and test-taking, which would have been out of reach without the EFMP.
The Weber family, and Robbie in particular, have grown close to their carer, Sharon Dyce. They fear the hole that will be left in their lives without her.
“She’s like the adult friend that understands him and doesn’t judge him and loves him,” Lorraine says of the relationship between Sharon and Robbie.
“He is 100 percent comfortable with her and trusts her and loves her. She gets down on his level. She’ll run around the backyard like a kid that’s his age. She has a very special understanding. She sees him in a different light than most adults would when they play with children. She fully immerses herself when she’s with Robbie. She finds the magic in children.”
Lorraine created a petition on Change.org which has so far amassed 35,000 signatures, in an effort to prevent the EFMP respite care programme being stopped. She says she has also been lobbying her local congressman and senators but so far hasn’t received much of a response.
The offices of North Carolina Senator Thom Tillis and local Congressman Richard Hudson did not respond to several requests from Al Jazeera for an interview.
Dr Jane Charles, a South Carolina-based developmental behavioural pediatrician, says that marriages of parents with special-needs children can often become strained, making initiatives such as EFMP extremely valuable.
“It’s hugely important,” she says, “when you have even just a couple of hours a week that you can have on your own. We know that families with kids with special needs, autistic or not, have much higher rates of divorce, and much higher rates of depression, especially mums.”
|Robbie hits a tree with a branch at the Weber home in Southern Pines, North Carolina [Andrew Craft/Al Jazeera]|
But what about the non-military families with autistic children who have never had access to services such as the EFMP? One in 68 children in the US have autism diagnosed, according to Autism Speaks, a New York-based autism advocacy organisation. However, support services for autistic children in the US are limited, particularly in North Carolina.
Destiny Sandoval, 39, of Clayton, North Carolina, has lived with this struggle for more than a decade. Her sons, Darian, 15, and Dustin, nine, are both autistic.
Darian, who has lower functioning autism, sometimes doesn’t sleep for three days at a time. And when he does sleep, Destiny says, it’s maybe for four or five hours.
“There’s no such thing as a normal day,” she explains. “We tend to wake up at 3am and we don’t normally go to bed until 10 or 11 at night. It’s exhausting.”
This has taken its toll on Destiny, who has developed blood sugar problems, is constantly sleep-deprived, and has little time to look after herself.
“It’s depressing,” she says. “And it’s very lonely at times. You can feel very isolated. The general public does not understand the struggles that you have with your child. Even going grocery shopping is like climbing a mountain. You’re always worried about your child running off or grabbing something they shouldn’t or getting overwhelmed by the lights, the sounds, and the noises. You kind of live on edge. It’s like living on a rollercoaster.”
Through the state, Darian is provided with eight hours of respite care a month. But Destiny, who is a psychology student at a local university, believes it would take 40 hours of care each week for her son to show some improvement. This, however, would cost $1,000 a week, which her family cannot afford. They’ve tried to access behaviour therapy services for Darian under Medicaid, but have been on a waiting list for seven years.
“[Darian’s] 15 now and I’m wondering what it’s going to be like when he’s an adult,” she says. “I’m going to need a lot more help with him being bigger and stronger and I don’t know if I’m going to be able to do it.”
Amy Perry, an autism resource specialist for the North Carolina Autism Society in Raleigh, whose job it is to connect parents with autistic children to support services in the state, says there are limited resources available for families such as Destiny’s. Amy, whose 20-year-old daughter has autism, explains that there are often more people on waiting lists than there are actually receiving the services.
“It all comes down to money,” she says. “Care for children with autism is expensive. It’s usually too expensive for most parents to private pay.”
Amy says the services the EFMP provided were potentially life-changing and that it went above and beyond what is available to non-military families.
“These kids [were] able to get the therapy that they need at a young age and it completely changes the trajectory of autism in many, many cases,” she says. “The children end up doing so much better and [become] somewhat higher functioning [and] need less assistance in the future because they’re giving them the help and the assistance when they’re young.”
Amy laments the scrapping of the programme and worries that families such as the Kondiks and Webers will find themselves in a predicament when the EFMP disappears later this month – the resources just aren’t there or are nearly impossible to access, she says.
Under Medicaid, B3 Respite provides autistic children with between three and six hours of respite care a week but military families aren’t typically eligible. Amy says that most military families are ineligible because they’re covered by military health insurance known as Tricare and that their income places them just above the cutoff for Medicaid.
“The military puts families in a tough spot, leaving them unable to access community resources that may be available to local residents,” Amy says.
For the Kondik family, and their son Albert, the future is uncertain. This summer, shortly after the EFMP is terminated, Mark will deploy to the Korean Peninsula for roughly a year. Without respite care for Albert, he is worried about how Kami will manage alone and whether all the progress Albert has made will be reversed.