On April 2, World Autism Awareness Day will again highlight the need to help improve the quality of life of children and adults who are affected by autism so that they can lead full and meaningful lives.
Often a child’s autism diagnosis cause parents to despair, however, it need not mean the end of the road, says Ilana Gerschlowitz, Managing Director of The Star Academy, an organisation servicing children with autism.
Affiliated with the Center for Autism and Related Disorders (CARD) in the United States, The Star Academy currently services children in South Africa and Africa, including Johannesburg, Durban, Pretoria, Cape Town, Mauritius, Zimbabwe and Ghana.
What is autism?
Manifesting prior to the age of 3, with some instances becoming evident as early as 6 months, autism is a development disorder characterised by impairment in social interaction and communication, as well as the presence of restricted and/or repetitive patterns of behaviour.
Individuals with autism fail to develop social relationships appropriate to developmental level, are impaired in their use and understanding of nonverbal social behaviour (eye contact, gestures facial expressions), and lack social or emotional reciprocity,” explains Gerschlowitz
“Their impairments in communication may manifest in a delay in or total lack of spoken language, an inability to initiate or sustain conversation with others, and repetitive or echoic use of language. These individuals often exhibit preoccupation with restricted patters of interest that is abnormal in either intensity or focus, inflexible adherence to specific non – functional routines or rituals and repetitive motor mannerisms.”
According to Gerschlowitz children with autism often develop maladaptive and challenging behaviours, such as elopement, aggression and excessive tantrums in order to communicate their needs and desires. These behaviours interfere with their daily functioning and capacity for learning. Furthermore, the progress of children with autism is often hampered by sensory dysregulation.
Prof Cliff Allwood, specialist child psychiatrist at the Pietermaritzburg Akeso Clinic, says “there are many theories about the causes but no concrete certainty. There sometimes are possible genetic factors and prenatal influences suggested, but often no known causal factors can be identified.”
Gershlowitz adds that, according to many experts, autism is caused by genetic susceptibility coupled with environmental triggers. “What loads the gun and pulls the trigger for each child can be different. There is no one specific gene isolated but a susceptibility to various triggers.”
Symptoms manifest through brain and gut inflammation, immune dysregulation, nutrient deficiencies, impaired detoxification and viral, bacterial and or yeast infections. “One of the biggest contributing factors to the rising stats in autism is environmental toxins. Many years ago when coal miners dug for coal they would take with them a yellow canary and if the oxygen levels were too low the canary would die. In this way the miners would know that they couldn’t dig deeper. In the same way children with autism are referred to as the yellow canaries of this world because they are more genetically predisposed to being sensitive to environmental toxins. These pathologies need to be tested for and aggressively treated in order to treat and help the child with autism,” she stresses.
Gershlowitz says autism can have a devastating impact on a child’s quality of life.
“Many children are medically ill and can exhibit with Obsessive Compulsive Disorders (OCD) behaviours and eating disorders. Paediatric Acute Neuro-Psychotic Syndrome (PANS) is also often diagnosed in children with autism. Such a child would be affected because a strep infection cause inflammation in the ganglia of the brain and their brain is high-jacked from any form of normal reasoning.
“Gut inflammation and leaky gut, including bacterial and fungal infections, can contribute to the distress of a child with autism because they suffer from severe stomach pain, sometimes constipation or diarrhoea.
“Nutrient deficiencies can cause their sensory system to be dysfunctional and therefore they can experience different tastes, sound can be too loud, or visual stimuli can be overwhelming. Fungal infections, nutrient deficiencies and chemical imbalances can cause the child to struggle to fall and or stay to sleep. When the child is sleep deprived, they become more irritable and struggle to learn and function.
“Children with autism can often feel medically unwell and are sadly incorrectly treated with Risperdal and the likes instead of treating their leaky gut and treating immune dysregulation, inflammation and nutrient deficiencies.
“Both children and adults with autism can suffer from depression because of low self-esteem and because of a lack of confidence. This all relates back to the fact that they don’t have the necessary skills to be successful in an academic, professional or social environment. This can also lead to a child becoming a social outcast if the child does not have the skills to make friends or keep them for that matter. Therefore children with autism need expert intervention to teach them the necessary skills in order for them to implement those skills when needed.
The rate of autism in all regions of the world is high and it has a tremendous impact on children, their families, communities and societies. (http://www.un.org/en/events/autismday/).
Gerschlowitz points out that accurate statistics for SA are not available partly due to a lack of awareness and resources in rural areas.
“However, as an organisation servicing children with autism in SA we receive at least ten calls a week of parents who have either received a diagnosis of autism for their child or who suspect that their child has autism. Thembisa Clinic, for example, said they are diagnosing 6 children a week, but sending them home with no services. We are currently in talks with Thembisa clinic to set up an outreach program for Star and Thembisa to partner in the fight against autism and to try to bring services and make treatment options available to the under- privileged communities in SA.”
According to Prof Allwood, there no “cure” for any condition in the autistic spectrum, “but a lot can be done for the sufferer and their family by way of understanding (psycho-education) and specific treatments for the sufferer.
“The interventions have to be tailored for the sufferer and depend on the significant presenting problem/s and the developmental stage. The presenting problems often change with the age and stage of the sufferer. Different therapies such as psychotherapy, speech therapy and occupational therapy are most helpful. Sometimes medication may help with specific symptoms. Special education is often necessary. The families of these sufferers often require a great deal of psychological support since the sufferer’s behaviour may be extremely difficult to manage,” he advises.
While there currently there is no one simple cure, autism is treatable and significant success has been achieved in various instances, Gershlowitz agrees.
Dr Jaquelyn McCandless, an expert in psychiatry and neurology, and author of the book “Children With Starving Brains”, believes autistic children do not need drugs such as Ritalin or anti-psychotic medications. The common denominator underlying developmental disorders is that proper nourishment does not reach the brain cells. Accordingly, autistic children improve and often recover when their inflamed digestive systems are healed, immune systems are rebalanced and toxins are removed from their diets and heavy metals from their bodies, she advises.
The majority of autistic children suffer from impaired gastrointestinal (GI) health. Many children are unable verbally to express the pain they feel yet GI problems are often obvious persistent diarrhoea, constipation, abdominal bloating or abnormally appearing stools.
Food allergies, intolerance to wheat and milk products, immune impairment such as frequent ear infections in infancy and chronic yeast, viral or bacterial infections all point to a need to have the GI system evaluated. Dysfunctions such as leaky gut, fungal bacterial and parasite overgrowth, malabsorption, maldigestion and inflammation are frequently noted by doctors working with children with autism.
Dr McCandless also notes that the mercury containing Hepatitis B vaccine given at birth when the immune system and liver are immature may act as a trigger that set into motion the events that result in GI and neurological deficits we see in autism. Another heavy metal often found in children with autism is lead. Lead causes loss of IQ, loss of appetite as well as development and behaviour problems. Removing toxic metals such as lead and mercury may be an effective treatment for autistic children.
Applied behaviour analysis (ABA) is crucial and research has proven its success at addressing these challenges for children with autism. However ABA and biomedical intervention go hand in hand, Gershlowitz stresses.
ABA is defined as the application of the principles of behaviour to issues that are socially important in order to produce practical change. ABA is the only evidenced-based treatment proven to be effective in treating ASD. Over the past 40 years, several thousand published research studies have documented the effectiveness of ABA, Gershlowitz points out.
Research has shown that a significant proportion of children with autism can achieve the optimal outcome of everyday functioning that is indistinguishable from that of typical peers with early and intensive ABA therapy.
Data kept by the Autism Research Institute of parental reports on the most effective (and least effective) treatments, furthermore show that the Specific Carbohydrate Diet (SCD Diet) leads to improvement in a whopping 71% of children with autism. SCD stops the vicious cycle of malabsorption and microbial over-growth by removing the microbes’ food: sugars, specifically di- and poly-saccharides.
Another diet that has been found effective in a large percentage of children on the spectrum is the casein and gluten free diet. Removing these suspect foods from the diet sometimes results in dramatic improvements in both digestive and neurological symptoms.
Concludes Gerschlowitz: “The importance of proper medical testing and intervention cannot be understated. The sooner a child is treated, the better the chances for improvement and possibly recovery.”