“I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream.” — Dr Temple Grandin
Autism is a spectrum disorder, manifesting in many different ways and different degrees in terms of its impact on each child. It is often a world of silence, where children on the spectrum are challenged to cope with deficits in basic skills that most of us take for granted. For a child on the spectrum, this can mean challenges in speech and language, social interaction, play and cognition. Additional deficits may include academic, adaptive and executive functioning skills, which impact heavily on the child and the family.
This silence deepens as cases of autism become more prevalent and more pervasive. A new government survey of parents in the US suggests that 1 in 45 children, ages three to 17, have been diagnosed with autism spectrum disorder (ASD). This is notably higher than the official (US) government estimate of 1 in 68 American children with autism, by the Centers for Disease Control and Prevention (CDC).
Because the new numbers come from a parent survey, they don’t replace the CDC’s 1-in-68 figure as the official estimate of autism prevalence in the US. However, the CDC has ac knowledged that its estimate has significant limitations. As such, it can miss children who are not receiving medical or special education services related to autism.
Back in our home territory, South Africa, we do not as yet have accurate statistics of cases of autism, but the Star Academy receives at least 20 calls a week from parents around South Africa whose children have received an autism diagnosis and who are in need of expert education programs and medical care.
In 2013, the American Psychiatric Association revised the diagnostic criteria for autism, resulting in broadening the parameters of the spectrum. Today this encompasses anything from brilliant scientists, artists, and musicians to an individual who cannot dress herself. However the symptoms may manifest, no two children show autism symptoms in the same way. One symptom that many children do share is the inability to make an intelligible sound.
“In our world, where the internet of things has brought communication more to the forefront than ever, this can be a torturous experience for parents. As silence gives way to screams or crying, parents can’t always know what is causing the problem. Are they in pain? Did they have a bad dream? Is something troubling them?” explains Ilana Gerschlowitz, Board Certified Autism Technician (BCAT) and director of The Star Academy, experts in education and intervention using evidence-based Applied Behaviour Analysis (ABA) as a tool to help children with autism.
“As parents, we want to do everything in our power to protect our children, to keep our child out of harm’s way as much as is humanly possible,” says the BCAT graduate who is also mother to a 14-year-old with an autism diagnosis.
Imagine watching your child screaming or crying. You know that something is desperately wrong, but you don’t know what it is, and often there is nothing you can do to make it better. You try. Does she want her favourite toy? Is her tummy sore? You find yourself going through all the possibilities which helped the last time. Only this time, it’s not working. Eventually, from sheer exhaustion, the screams abate. Your heartbeat slows down, and silence envelopes your child’s world once more.
These are the resultant challenges of autism which are highlighted on World Autism Awareness Day (WAAD). Activities on the day draw attention to the global prevalence of autism by shedding light on the condition. This day is a call to help those who are undiagnosed and misunderstood, for all children with ASD around the world.
Left untreated, autism can be a debilitating diagnosis. A child may not speak or effectively communicate their needs or feelings. Other symptoms may include struggling to fall and stay asleep, picky eating, inability to establish or maintain friendships and hyperactivity. Children on the spectrum struggle to occupy themselves and find it challenging to learn from the natural environment the way typically developing children do.
So, is there hope for children with autism? Evidence says there is. Early diagnosis means early intervention, key factors in impacting on a child on the spectrum. This can facilitate access to special education programs, crucial for children with speech delays and other skill deficits.
“Despite the highs and lows experienced when it comes to having a child with autism, the message of WAAD is one of hope,” says Gerschlowitz, who is a passionate advocate on helping children with autism to lead as fulfilling a life as possible.
“Receiving early intervention in the form of ABA means autism need not be a lifelong disability and children can recover. Not every child will recover completely, but they can certainly make progress towards leading functional and independent lives,” she explains. She’s seen many cases of the positive impact of interventions that help children with autism diagnosis. The key is creating awareness so that children can have the opportunity to receive the necessary intervention in the form of specialised education programs and a biomedical treatment protocol.
The Star Academy observed a Wold Autism Awareness Day in April this year where participants wore blue – the colour that is globally associated with showing support for WAAD. “We invite[d] South Africans to show solidarity for children on the autism spectrum with something blue — be it a scarf, a T-shirt, or a tie. Together we can send a strong message of support: we can give a voice to our children, creating awareness which can help break through the silence of autism,” concludes Gerschlowitz.
She is a mom to three boys. Two of them have received an autism diagnosis. David, who is 14 years old, continues to improve and receives expert treatment for the condition, and four-year-old Aaron has fully recovered and attends a mainstream school.
According to Gerschlowitz, red flags in a young developing child include:
- delayed speech;
- not responding when you call their name;
- poor eye contact;
- lining up toys or spinning the wheels of a car instead of appropriate play;
- not pointing for communication, and being unaware of environmental stimuli such as an aeroplane flying over;
- The child appears to be in its own world, won’t follow receptive instructions and adheres strictly to routines, being inflexible should they be changed; and
- Repetitive behaviours such as hand-flapping of toe-walking can also be observed.
Llana Gerschlowitz is the director of the Star Academy – a facility for autism and related disorders