April is Autism Awareness month, a complex condition needing more awareness. Autism diagnosis has increased steeply, especially in developed countries. It is a ‘spectrum’ condition as it is renders it multi-faceted with varied symptomology and diverse eventualities. These individ-uals are prone to social challenges that include social communication problems, sensory processing difficulties and regimental patterned behaviour.
In technical terms it is a complex neurobehavioural disorder that impairs things that we take for granted such as social interaction. This is not an uncommon condition; unfortunately, there are no exact figures regarding the prevalence of autism in Malta.
A trivial indication is that it is affecting 0.5 to one per cent of the population, depending on how one defines it, and affects four times more boys than girls. The number of people who have been diagnosed as having autism has increased tremendously since the 1980s and this is thought to be probably due to changes in diagnostic criteria and the intensification of awareness of this condition rather than an actual true increase in the rate of this condition.
The cause is unknown but genetic factors (inherited from the parents) predominate. However, the actual mode of heritability is complex and the specific genes involved are unknown. Many studies have shown time and again that there is no link whatsoever between vaccinations and autism.
Individuals with this condition find it difficult to understand what others think and feel and this makes it difficult for them to express themselves with words, gestures, facial expressions and touch. This naturally delays the development of all communication skills including language development.
The condition may thus lead to rigid and repetitive behaviours, lack of eye contact, failure to respond to their name, inability to follow another person’s gaze or pointed finger to an object, poor skills in pretend play and imitation. Indeed, about a third to a half of individuals with autism do not develop sufficient natural speech to fulfil their communication needs.
Matters may further be exacerbated by additional and related conditions such as learning disability, attention deficit hyperactivity disorder (ADHD), tic disorders, obsessive compulsive disorder (OCD), generalised anxiety and depression, and epilepsy.
From the point of view of autistic individuals, they find difficulty in making sense of the environment which they inhabit and find everyday reality a bewildering non-sense of events, places and people. A substantial proportion of their lives is spent attempting to work out the pattern behind life, something that the rest of learn innately, with no particular effort, as part of the growing-up process.
Autistic individuals cannot clearly see boundaries, meanings or order in their everyday life. This includes relating to other people in constructive ways, impairing abilities to form friendships and other long-term relationships.
It is because of this range and variety of symptoms that this condition is referred to autism spectrum disorder (ASD), which may range in severity from a relatively mild handicap that slightly limits an otherwise normal life, to a devastating level disability that may require permanent institutional care.
Diagnosing ASD can be difficult as there is no specific medical test. Instead, health care professionals analyse behaviour and development to reach a diagnosis. The condition is usually diagnosed between 18 months and two years of age, and the earlier the diagnosis, the better, so as to attempt to intervene as soon as possible and mitigate the effects of the condition.
The diagnosis is made in two steps: by developmental screening and by a comprehensive multidisciplinary evaluation. The former is a short test that determines if the basic learning skills and developmental milestones are being appropriately reached.
This is a process of parent questioning and child observation, examination and interaction. It is particularly important to carefully screen children at higher risk of ASD, such as those who are premature, low birth weight babies, or children with siblings who have ASD.
The second step of diagnosis is a comprehensive and multidisciplinary evaluation which includes a hearing and vision screening, genetic testing, neurological testing, and any other medical testing that may be required.
There is no cure for ASD but therapy is tailored for individual needs such that treatment reduces symptoms and improves learning abilities and development. This includes so-called Behaviour and Communication Treatments which are applied to reinforce positive behaviours and reduce negative ones. There are no known ways to prevent ASD.
However, awareness is essential in order to mitigate the effects and diagnose the condition as soon as possible.
Unfortunately, parents raising a child with this condition are not only dealing with the challenges that autism may present but also having to face the unfair judgement of society. Sadly, people are quick to judge and assume that either the parent is failing or that the child is basically out of control.
Awareness should be all year round to make sure to provide a better quality of life to both patients and their families
The last thing parents need is to be told to ‘discipline’ their child. It is support that should be offered, not judgement. One cannot fail to mention adults with autism who are also a valuable part of society.
Employers must identify the strengths and strong points of many persons with autism, who are well-known for their honesty, accuracy, attention to detail, perseverance and loyalty. With some workplace adjustments and the procurement of necessary tools, I am sure that this part of our society can make a huge difference to members of the team, their employers and the company.
In 2016, the government proved that autism is a priority. This was evidenced by the enactment of the Persons within the Autism Spectrum (Empowerment) Act. This legislation clearly indicates the framework which autism policy in Malta must observe.
It also established the Autism Advisory Council. This statutory body is a cross-sectoral forum, composed of policymakers, academics and professionals in key autism fields such as education, health and social services. This forum also includes representatives of Malta’s independent monitoring mechanism for disability, and civil society. This approach allows autism to be tackled in a holistic manner to reflect the true nature of this condition.
On an educational level, the Ministry for Education is supporting and educating teachers and academic staff on this subject. Information and additional training is being given to improve the understanding of this complex condition.
The Autism Spectrum Support Team within the Ministry for Education empowers educators and parents to maximise the students’ potential. Each student is an individual with specific needs in order to facilitate learning, support social development and behaviours and improve the student’s abilities in mainstream environments.
The Ministry for Health has set up the Child and Young People’s Services unit (CYPS) at St Luke’s Hospital. This guidance unit offers services to children and young people who have a mental disorder or condition. Some of the services offered are psychiatric assessments, which are better known as autism pathway.
During this process children are assessed by a number of steps which include doctor visits, meetings with parents to discuss symptoms, one-to-one meetings with patients and school visits. The one-to-one meetings are customised according to the age of the patient.
This unit is also offering parental skills groups, better known as SYGNET, to help parents acquire the necessary skills.
Another unit was set up at Mater Dei Hospital as part of the emergency section; the Child and Adolescent Psychiatry Emergency Services, also known as CAPES, which offers emergency psychiatric care.
With the support of other non-governmental organisations and the Marigold Foundation, we have improved drastically in this sector.
However, there is much more to do, especially where autism-specialised services are involved, such as speech therapy. Even though, the government is subsidising several services and providing grants, which unfortunately at this point are limited. We are aware that additional resources in order to offer free specialised services are required.
We are encouraging more research in the identification of causative factors and genetic evaluation thus increasing the possibility of providing optimal treatment. This would also lead to early diagnosis, preferably at birth.
Awareness should be all year round to make sure to provide a better quality of life to both patients and their families. Moreover, we would be able to provide a better prognosis by putting into service the whole potential of these patients.
Deo Debattista, a medical doctor, is the Parliamentary Secretary for Consumer Rights, Public Cleansing and Support for the Capital City.
This is a Times of Malta print opinion piece
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