The parents of an autistic and non-verbal teenager have spoken up about the lack of inclusion after their son was forced to change school four times in three years.

Emma and Julian McEwen believe the education system has not catered for the needs of many neurodiverse people like their 15-year-old son, Finn – especially once they move to senior school.

Times of Malta spoke to the parents of another three autistic children who were forced to leave their school or attend less frequently, once they grew older. The parents did not wish to be named.

Their stories shed light on the lack of resources and training across schools. The Commission for the Rights of Persons with Disability said it got involved “in cases where parents were told to keep their children at home from such schools either totally or reduced school days”. The commission spoke about the need for more learning support educators (LSEs) and more training for educators, among other things.

Anne-Marie Callus, an associate professor at the University of Malta’s Department of Disability Studies, said that such stories showed that “it’s high time to have another evaluation of the way inclusive education is working – or not working – in Malta”.

Finn’s story

Finn was diagnosed with autism when he was two-and-a-half. He is non-verbal, with cognitive delay, sensory processing disorder and requires a high level of support.

“We were bringing up a child who had autism and we were able to live our lives as a relatively normal family. He was young, so there was not a huge gulf of a difference with other kids,” they say.

But things changed as he progressed through school.

Behaviours of unmet needs have manifested in open-hand slapping, banging his head against tables, doors, glass and walls, loud vocalisations and slumping onto someone’s lap. All these actions communicate: 'You don’t understand me', 'you treat me as less', 'I cannot cope any more'- Finn's parents, Julian and Emma McKewen

“Schools naturally adapt their structure for older children, for example, classes and tutoring become more structured, sports become more challenging etc. Schools, however, do not do enough to adapt to the needs of children like Finn. His behaviour and mental health deteriorated because of unmet needs – the lack of inclusion in education, the lack of social inclusion, the lack of appropriate education programmes,” they say.

Behaviours of unmet needs have manifested in open-hand slapping, banging his head against tables, doors, glass and walls, loud vocalisations and slumping onto someone’s lap. All these actions communicate: “You don’t understand me”, “you treat me as less”, “I cannot cope any more”, his parents explain.

But now it is no longer a little child slapping, banging or slumping. It is a growing teenager.

Living in a ‘mini personal hell’

Julian elaborates. What the education system lacks is awareness about the cause of such behaviour and the skills to address those causes.

“When you feel stressed or anxious and need to take yourself to a quiet spot, you can go for a coffee or a walk; some people unconsciously twirl their hair in their fingers or drum their fingers on the desk. This is self-regulation,” explains Julian.

So, when children with autism are overwhelmed by, for example, loud sounds – which can include construction noises or a teacher yelling (as had happened to Finn) – their anxiety levels soar. They cannot communicate their anxiety and they cannot take themselves out of the downward spiral. They cannot self-regulate.

“Put this together with not being able to speak and you’ve got a mini personal hell,” Julian says, adding this leads to the “challenging behaviour”.

“This behaviour is their ‘wheelchair’ – their visible sign they need us, as a society, to adapt. Providing a ramp for a wheelchair is a no-brainer. Providing a room for anyone to get calm in should be, too, but it isn’t,” says Julian as he speaks about the need for all schools to have calm rooms where neurodiverse and neurotypical children can be taken to self-regulate, to calm themselves.

Finn was “asked to leave” the private school he had been attending all his life in the last year of junior school, after the school board asked the parents to put him on medication. After that he went to a government middle school where he received better support, followed by a secondary school but, again because of poor facilities in later years, he had to leave.

He is now at a resource centre where the parents believe he is still not being given the right support. Discussions with the centre are underway to find a solution.

“Finn is very resilient. He will surprise you. What we want is academic and emotional support as needed by each individual to access education and inclusion. We want policies to change. We want equality,” they say.

Teachers’ perspective

Marco Bonnici, who heads the Malta Union of Teachers, says it is unfair that, when there are difficulties, fingers are pointed at LSEs and educators.

“We are seeing an ongoing wave of unjustified criticism from some parents towards the work of LSEs and other educators when dealing with disability issues… LSEs and educators do their utmost to support students during the entire education journey but blaming them for situations beyond their control is unfair,” he says, adding that “resources are never enough, especially human resources”.

One LSE, who works in a government school, believes that LSEs are trained to handle children with disabilities but lack the resources and specialised training to deal with specific conditions.

We are seeing an ongoing wave of unjustified criticism from some parents towards the work of LSEs and other educators when dealing with disability issues- Marco Bonnici, who heads the Malta Union of Teachers

Another LSE who works in a private school says: “I feel that not all teachers have the same inclusive attitude towards students with disabilities... The reality in independent schools may be different from that in State schools. Collaboration with parents is expected and this helps everyone to work together towards common goals of students.”

Questions sent to the education authorities remained unanswered at the time of writing.