One of the most misunderstood stereotypes that is talked about, is autism. On April 2nd the world celebrated World Autism Awareness Day. The campaign was first launched in 2007 with its roots in a medical model and more specifically, one that was looking for a possible cure. However, the jigsaw piece and the use of the colour blue indicating “cure” have been criticised by the Autistic community. Thus, this year the campaign was launched as `Autism Acceptance’ using the gold or coloured infinity logo. For decades autistic people have been labelled and even international films with autistic characters were produced for the masses. These have been key in perpetuating stigma by depicting autistic people as if they are devoid of emotion and eccentric or odd. Meanwhile, some interventions have treated the condition as something that can be reprogrammed through conditioning. Thankfully, many people with autism have now become the true voices of Autism. They have encouraged research and are finding evidence that is important for all the members of society. One way of moving towards acceptance is through educating each other in the corporate world at all levels. The other is integrating autistic individuals into mainstream education, highlighting the scientific knowledge about the condition and also eliminating the stigma of special education.
What is Autism
Autism Spectrum Disorder (ASD) is a neurodevelopmental condition on a spectrum. So, on one end there are individuals who are fully functional, will graduate and be able to work; while on the other end they have difficulty in doing the daily chores and may need assistance and special school facilities. The diagnosis is behavioural, there are diagnostic questionnaires but no biological test as yet. Usually, a child or an adult will be diagnosed by a specialist team if they show impairment in social and verbal communication and possibly display rigid or repetitive interests. Many autistic people show some common traits, and a fair number of them have social difficulties that affect the quality of their life. However, ASD is rarely pure, it is usually comorbid, meaning that they may also have epilepsy, anxiety, depression, attention deficit hyperactivity disorder (ADHD), sleep and eating problems or some other condition. In fact, autism is also thought to be common in people with Down Syndrome (DS). The current estimation worldwide is that 1% of any population, both adults and children, have a diagnosis of autism and 5% have AD(H)D. Although more males are diagnosed, it has been suggested that this is due to girls being better at masking the symptoms and the diagnosis being missed or delayed. It has also been proposed that girls are often misdiagnosed because society does not consider “shy” girls socially awkward. Furthermore, scientists conducting twin studies have found that the condition is heritable. However, for most cases of ASD, the condition is thought to be polygenic meaning that many genes with a small effect could be the cause.
Autism is diagnosed by professionals using the International Classification of Diseases (ICD) of the World Health Organization. The other tool is the American Diagnostic and Statistical Manual (DSM) of Mental Disorders. No tool is 100% accurate. Therefore, there continues to be controversy about some guidelines, despite these tools, having been used by specialists for decades. Social and linguistic communication challenges may be evident in early development, many three years old autistic children are not able to use language to communicate, like other mainstream children. Hence, the diagnosis may be delayed. Usually, parents suspect a problem in their child, if they notice a lack of language, reduced social response and rigid behaviour. A characteristic sign of ASD is the inability to follow where somebody is looking, pointing or focussing his/her attention and a lack of interest in play in infancy. As the individual grows older, there will be evidence of difficulties in peer interaction and eye contact, and the inability to understand someone else’s body language or facial expression. However, it should be noted that people with autism can respond to other people’s distress and have natural empathy. In the past, people thought that ASD meant a lack of sociability, but it is now well understood that people with ASD want friends, and are socially interested but encounter difficulty in connecting with others. For example, in parallel play, children with autism will play next to each other which is preferable as it offers the opportunity to spend time together with friends without any social pressure. Some parents and teachers use visual timetables to help autistic children structure their time and know what to expect. Other autistic people find sensory processing extremely challenging. They may have an involuntary response to sudden sensations, touching, movement, noise or light. In order to self-regulate some people with autism will stim (self-stimulation) which is a repetitive behaviour such as tapping fingers, humming, whistling, repeating words, smelling objects, staring or zoning out, self-injury such as biting or scratching or flapping their arms. These actions can be disruptive and may interfere with regular activities. However, with more understanding and inclusivity in society, many schools and some airports around the world have designed sensory rooms which can help an individual with self-regulation. Nowadays many people with autism also have the option to use noise-blocking headsets and dark glasses to reduce the effect of light. A word of advice for parents: if your child at around 3 years has verbal communication deficiency, social difficulties or any of the traits described in this short article, do not panic but consult your physician for a specialist’s opinion.
Thankfully, Bahrain has many specialists, special needs centres and schools that help autistic children shine in their individuality. Autism has become a word that is often used loosely and incorrectly. Please note, that if you meet one autistic person, you have met only one person with autism. Each individual is unique and presents differently. It is a neurodevelopmental condition, and thus needs to be properly assessed by a professional, understood and accepted by parents, the family and all in society. We need a more inclusive world where there are opportunities that empower foundational change and celebrate the uniqueness of neurodivergent individuals. For families, there must not be feelings of guilt. More public events and activities that are adapted to include people with ASD can help in raising awareness and reducing stigma. My focus has been to encourage the private sector to consider adapting their mindset of charity to one of investment through their corporate social responsibility budgets so that there is long-term sustainability for the differently-abled community. Many ask me why? Because, the reality is, that as the children get older, so do their parents and caregivers.
Nivedita M. Dhadphale. MSc (Psychology) (Strath), MBA (Strath).
PGD Psychology and Neuroscience of Mental Health (IOPPN, KCL)
Assistant Lecturer in Psychology at the British University of Bahrain.
Fellow of CIM, Member of British Psychological Society.