The Malta National Autism Strategy 2021-2030 is Malta’s first ever strategy for Autism Spectrum Disorder (ASD). The strategy, titled ‘Respect Diversity: Safeguarding Equality’, was published by the Ministry for Inclusion and Social Wellbeing on 30 March of this year, and tackles a myriad of issues related to ASD in Malta, including early identification, education, employment and self-advocacy.

The public consultation on the strategy closed on 20 April and elicited a widespread response, with 185 responses from NGOs, governmental organisations, parents and persons on the autism spectrum. Amongst the issues they raised were the need for necessary therapies and further initiatives that support parents and accessibility of education as well as full inclusion of children.

In Malta, some professionals estimate that 1:52 births will be identified as being on the spectrum, while the Statement Moderating Panel has indicated that this number could be greater.

The Malta Independent on Sunday spoke to two mental health professionals who specialise in autism, and asked them what challenges the new Autism Strategy sheds light on and what impact the strategy will have in Malta, both for those on the spectrum and society at large.

Dr Joe Cassar is a consultant psychiatrist and Dr Emma Micallef Konewko is a clinical psychologist.

 

What is autism?

Despite being the ones who perform assessments on youths on the spectrum, Cassar said that no psychiatrists dealing with children and adolescents and no psychologists working in the Children Youth Psychiatric Services were consulted before the strategy was drawn up.

“This is not simply a condition that you can pinpoint,” Cassar said. “It affects the brain and brain function of every person who has ASD, so I would have assumed that the experts on the brain would have been consulted on the strategy.”

With this in mind, he provided a psychological outline of ASD, highlighting how the condition revolves around the individual having trouble processing information in different areas of the brain. These problems in processing information develop with the individuals as they grow.

“It’s a development disorder,” said Cassar. “It’s not a disorder you get at one point in time and that’s it. As you develop, it develops with you,” he said.

The Diagnostic Statistical Manual 5 (DSM) says that autism is characterised by deficits in verbal and nonverbal communication skills; social impairments; limited initiation of social interactions and reduced responses to social overtures.

However, the degrees that these aspects affect those on the spectrum differ from person to person.

“It is a very complex condition – that is why it’s a spectrum,” Cassar noted.

 

Diagnosing ASD

Despite the concern that consultant psychiatrists were not consulted before the strategy was devised, Cassar and Micallef Konewko both praised the strategy and said that it highlights many issues that they hear autistic individuals and their families bring up in their practices.

One such issue is diagnosing those on the spectrum, which is a challenging process for psychiatrists.

“It’s a big diagnosis to give so we have to make sure we are giving the right diagnosis,” Micallef Konewko said.

Additionally, diagnosing an individual is time-consuming and clinician-intensive. The Autism Diagnostic Observation Schedule - otherwise known as the ADOS kit – which is considered the gold standard instrument when doing an autism assessment, is also financially taxing, with each kit costing over €3,500.

With few ADOS kits available for children, waiting lists to test children, as well as to start therapy thereafter are “huge”, Micallef Konewko said.

Cassar confirmed that the ADOS kit isn’t yet available in the public mental health system in Malta, which has posed a challenge to diagnosing adults.

Once the patient has been diagnosed, Micallef Konewko said it is essential that services are given to support the individual.

“One gap is that in Malta we are good at diagnosing, but what I see in private practice is the ‘after’. It's not just enough to diagnose, we have to get better at building services and support and intervention to support young people and adults,” she said.

On top of this, Micallef Konewko said that there are no government entities which offer autism services, such as therapy or psychiatric help, leaving private practices “inundated” with patients.

 

Parents’ concerns

Another issue the strategy addresses is autism and adulthood.

“One aspect which it does emphasise, and I think it's very positive, is the big black hole that we have with autism and adults,” Cassar explained. “When I say ‘adults’, I am referring to anyone 18 years and over. Their parents often question: ‘What will happen when we die and can’t take care of our child’? But the strategy addresses this and talks about employment and education. Now it needs to be translated into action.”

Many parents are also concerned about their children being prescribed too much medication. The strategy, consequently, tackles this issue.

“Understanding that the medical model of investigation, formal diagnosis and treatment should never exclude or replace ongoing functional, social and educational supports, and that ensuring these supports should be the primary focus for early identification and/or intervention,” the strategy indicates.

Individuals on the spectrum often have trouble adjusting to change, Cassar elaborated, which leads to those with ASD feeling overwhelmed and possibly severely decompensating, both on an emotional and behavioural level.

With a limit on human resources in Malta, no established government entity to provide psychiatric services for those with ASD and long waiting lists for private practices, people with ASD may need to turn to medication to deal with their issues.

“It's not a professional psychiatrist’s first option to offer medication for behavioural issues,” said Konewko, “but if there is nothing else to direct towards, sometimes one needs to choose the lesser of two evils. It's better than not offering anything at all.”

Cassar and Micallef Konewko both hope the strategy will encourage more services to be set up in Malta to avoid over-medication.

“Hopefully, like most strategies in the world, a strategy usually is published and put for consultation to literally start off a process where finances start being considered,” Cassar said. “Hopefully this strategy will be an eye-opener for people and encourage government to invest money in autism services.”

 

What impact will the strategy have in the long run?

Micallef Konewko and Cassar hope that the strategy will play a substantial role in educating the general public about what autism really is.

“Unfortunately, the image that society has, at least Maltese society, is that autism is a particular condition which they have seen in movies like Rain Man,” Cassar said. “But autism is not Rain Man. That is only one form out of a whole spectrum.”

“One thing that hopefully comes out of this strategy is educating the general public, including professionals, medical doctors, psychotherapists, and educators,” he added.

The strategy is an important step in autism awareness in Malta, Micallef Konewko and Cassar said.

“The strategy generates a wider conversation about increasing awareness,” Micallef Konewko said.

“Conversations link with highlighting needs and also the support and resources that are needed to address these needs, be it on a financial basis or on a practical level. I'm hopeful that this strategy will translate into good practice, but it is essential that we need the resources and the support to put these initiatives into practice.”

Cassar echoed this sentiment, saying that he hopes the strategy acts as a good springboard to put ideas into action that will empower those with ASD.

“It's a good start but it’s not enough,” he said. “We seriously need to get government to put a lot of money into it and seriously consider how to implement the strategy. Otherwise, it will remain an academic exercise.”