The father of a 15-year-old autistic and non-verbal teen recently described how his son gets locked in a “mini personal hell” when he is at school and his needs are not met.
Unlike other teens – who can reduce anxiety by asking for a bathroom break, or vent with their friends –children with autism who feel overwhelmed rely on their LSE at school to pick up on the fact that they need to self-regulate: walk around or leave the room to head to a quiet space.
If the LSE does not notice anything, that teen will experience an emotional build-up or sensory overload. The result? The challenging behaviour. It can be stimming, slapping, hitting, banging.
This is the behaviour that is causing some schools to ask that these children are medicated at school, or to ask the parents to bring in the child less frequently or not at all “for everyone’s safety”.
The teen’s parents, Julian and Emma McKewn, explained that if the cause of this behaviour is managed, then so is the behaviour.
But this requires special resources and training.
Over the past months, we have heard experts say they suspect an increase in cases of autism in Malta. But we do not have the statistics to understand how much. Which means we cannot plan ahead.
When the government launched the Special Schools Reform in 2010, the realities were different.
Anne-Marie Callus, an associate professor at the University of Malta’s Department of Disability Studies, said it’s high time to have another evaluation of the way inclusive education is working – or not working – in Malta.
We have long been hearing about the lack of LSEs. Last week, parents of children who attend a resource centre for secondary-school-age children with severe disabilities flagged this lack of resources and specialised training.
They were backed up by the commissioner for persons with a disability. But the government denied that there were any issues at the centre.
And if there is one thing worse than a lack of resources at a resource centre, it is a management that does not even see that there is an issue. Parents spoke about how, at such centres, there are three LSEs for eight students, in line with policy. Had those students been in mainstream, they would have had one each.
While the educational environment is different in mainstream schools and resource centres, the reality remains that if these children’s needs are not met – because the LSEs can’t cope – the challenging behaviour will manifest.
The education ministry said the National Strategy for Education, which is in its final consultation phase, will “transform” the sector and will cover all its needs. This is great. But it will only benefit the children of tomorrow. What about those who are there today? What about their burned-out parents?
This is urgent. This is not inclusion.
Suspending children or reducing their school hours because they behaved “challengingly” in reaction to their environment is the opposite of inclusion. It is exclusion.
As the teen’s father said, providing ramps for wheelchair users was not always a priority but today it is a no-brainer.
When it comes to autism, also a disability, society still has a lot of catching up to do.
There is an increasing number of children, fast growing into adults, who need what for them is like a ramp to wheelchair users: the right environment to be let in.
That is the only way they can get out of that mini personal hell.