Children diagnosed to have autism and ADHD face long waiting lists that sometimes exceed a year for state-provided services, with the alternative being hefty private costs, according to a report commissioned by parliament.

Meanwhile, there is no clear diagnosis pathway for adults with these two neurodevelopmental conditions.

The report also highlighted the lack of trained staff, resulting in long waiting lists and increased costs. 

The report, titled ‘Persons with Autism and Persons with ADHD: The need to understand and improve services for families in Malta’, was commissioned by parliament and carried out by the University of Malta’s Faculty for Social Well-being. 

Autism is a neurodevelopmental condition characterised by challenges with communication, behaviour and sensitivity, thought to affect one in 60 to 70 children in Malta. 

The reported increase in the incidence of autism gave rise to national legislation that catered for people with autism in 2016. More recently, in 2021 Malta’s National Autism Strategy 2021-2030 was published.

ADHD is also a neurodevelopmental condition, typically associated with inattention, impulsivity and hyperactivity. In Malta, 5.4% of children are living with ADHD.

The study sought to understand the experiences of those living with autism and ADHD and how support structures impact them. 

What the study found

The findings show that services in Malta have improved over recent years but improvement is needed in certain areas. 

Thirty per cent of service users reported being unsatisfied with the diagnostic process. Levels of dissatisfaction rose to 61 per cent for access to services, with many respondents saying they had not received any services at all in the last six months.

Autism is a neurodevelopmental condition characterised by challenges with communication, behaviour and sensitivity, thought to affect 60 to 70 children in Malta. Photo: Shutterstock.comAutism is a neurodevelopmental condition characterised by challenges with communication, behaviour and sensitivity, thought to affect 60 to 70 children in Malta. Photo: Shutterstock.com

Interviewees who sought a diagnosis for their child in the early years generally found that the process was thorough, reliable and well-informed at every stage, although perhaps somewhat lengthy, so diagnosis was quicker through private professionals. 

However, services surrounding the attainment of a diagnosis were severely lacking when it came to adults.

Eighty per cent of adult service user participants received their diagnosis during adulthood. They noted that they may have faced a different situation when they were of school age, since these conditions were less known then. 

“Nevertheless, caregivers are still reporting that there are instances where they know that there is a condition but find it hard to access a diagnosis as they are told to wait until the child is older,” the report said.

Support services and referrals for treatment offered following diagnosis were also found to be severely lacking, with 91 per cent of service user respondents and 82 per cent of caregivers not having received any services or information after receiving their diagnosis.

Following diagnosis, most caregivers sought vital services such as occupational therapy, speech therapy, behavioural therapy and related services. However, services available publicly involved extensive waiting lists. 

Service providers said that, in some cases, waiting lists were even longer than 13 months.

Caregivers reported that the disability allowance received was not enough to alleviate the financial burden, and some services, such as behavioural therapy, are hard to find locally, the report noted. 

A review of the services provided also reflected the critical reduction in services available for adults when compared to younger ages.

Correction: An earlier version of this report said that autism is believed to affect 60 to 70 children in Malta. The correct figure is one in 60 to 70 children.

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