Reopening could be very stressful for children with autism

Sixth-class pupil Yakub Bencheikh was the “happiest ever” when the Covid-19 lockdown started in March, says his mother Dorota, because school is a major stress in his life.

Diagnosed last year as being on the autism spectrum, “he was able to self-regulate much better, he wasn’t as argumentative”, she says of her son, when the challenge of school attendance was removed from his life. However, anxiety started kicking in after a while. “Every little cough or pain, he was afraid of getting the virus.” Then he worried his parents would become sick and die.

Come September, the 13-year-old boy is facing what is always a big milestone for any child in any circumstances: progression to second-level education. But clearly this year, particularly for children with additional needs, the fact that they will have been nearly six months out of the school routine will make the transition very strange and challenging.

“He is worried and excited about secondary school starting,” says Dorota of Yakub who, last November, went to a special school in Galway for a programme to help with his social skills but was looking forward to the imminent return to his mainstream primary school full-time when the lockdown came. “He doesn’t know what to expect.”

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Talking just before more details of this year's July Provision were announced by the Department of Education and Skills, Dorota says her main hope for summer 2020 is that Yakub will co-operate in availing of whatever support is offered to him.

“It hasn’t been easy since lockdown started to get him to engage in different things, even to go for a walk. He is happy indoors and not interacting much.” He does go out of their home in Knocknacarra to play football with his 10-year-old sister Leena, but is not interested in doing that every day.

“If he could go and interact with peers in any shape or form before September, it would be brilliant,” says Polish-born Dorota, whose husband, Fouad, is from Algeria.

The huge need for resocialisation and reacquaintance with the school environment among children such as Yakub is the focus of this year’s July Provision, which has been broadened out into a “Summer Education Programme 2020”.

Originally devised for children on the autism spectrum, July Provision is normally a scheme under which they can continue to attend special classes for two weeks after the end of the school year or parents are funded to hire a tutor to work with them at home for up to 40 hours.

This summer the programme, which is open to various cohorts of students with special educational needs, aims to run predominantly in schools, and funding for a home-based tutor will be given only where a student does not have a school-based place available to them, for example, those attending mainstream schools without a special class.

“What is critically different in the new programme’s support plan is that it will seek to address any instances of regression that may have occurred in a child, and prepare them for engaging in the learning process,” according to a statement from the department. Another change is that parents who qualify to use home-based tutors can opt for a special needs assistant (SNA) or a teacher, whereas before it had to be a registered teacher.

The national autism charity AsIAm has welcomed the summer programme and called on all relevant professionals to support it, so that all eligible children will have access to this "essential bridge of support". The willingness of enough schools, teachers and SNAs to be involved in what is a voluntary programme "is going to be the difference between success and failure", says AsIAm chief executive Adam Harris.

He welcomes the broadening of the scheme. “I think it was inequitable that children with similar needs but different diagnoses were excluded.” However, the larger numbers involved means there must be creativity, he suggests, in deploying the different options available.

There are an estimated 14,000 school-age children on the autism spectrum and the 65 per cent of those who are taught in mainstream classrooms “is a really important cohort”, he says.

For an autistic person, returning to routine might be very challenging

“It is going to be extremely challenging for all children returning to school but those going into a mainstream setting are going to be expected to re-engage in classes very quickly,” he says.

“It is easy maybe from the outside looking in to say surely the child will be delighted they have their routine back but, in fact, for an autistic person, returning to routine might be very challenging.”

This is why the co-ordinator of the Galway Autism Partnership (Gap), Aisling Colreavy, is hearing many parents say that the lockdown was not nearly as stressful as the unfolding recovery.

“The lockdown was very sudden and severe but people adapted because they knew what was expected of them, the guidelines were very clear,” she says. In this recovery period, “everything becomes grey rather than black and white; everything becomes a bit more blurred”.

People with autism like certainty, she explains. It is very difficult for parents not knowing what school life is going to be like in September and so unable to start preparing their child with autism.

“Planning is so central to these families’ lives,” she says. “If they plan, they can have control over their safety and wellbeing. If you don’t know what the restrictions are going to be, it is very hard to plan.”

The kids need a break from the parents; the parents need a break from the kids." For some parents, the summer camp is their only form of respite

July Provision will be key in trying to help children relearn skills that may have been lost since March. “There are skills we may take for granted if we don’t have a child with additional needs – skills that are required for learning and to go to school every day.”

Normally at this time of year, Gap would be in the throes of its summer camp programme for children aged three to 18, starting with the teenagers during June. Although it has had to stop all its "public-facing" activities since March, including weekend clubs and after-school clubs, the organisation is "optimistic and very determined", Colreavy says, to offer some kind of summer camps when it can. Some of these children have not played with anybody outside the family for more than 12 weeks, she points out.

“The kids need a break from the parents; the parents need a break from the kids.” For some parents, the summer camp is their only form of respite.

Fewer camps for more money is “not something we feel positive about, considering our members are already so financially vulnerable”, says Colreavy, who reckons that Gap, a self-funded charity actively supporting about 150 families, will be able to cover 60 per cent of the cost of camps, leaving parents, who can, to pay the balance. The focus of the summer for everybody will be the impending return to school.

“Even before any mention of Covid-19, a huge amount of people we work with would have experienced reduced timetables and school-related anxiety, so we have a lot of autistic kids who were not going into school and they were working on that.

“How are we going to get them back into school in September, after five or six months of being at home and feeling safe, maybe for the first time in a long time?” she wonders.

“If we can take any learning from this lockdown, I think that it is a damning indictment of the current education system for neuro-diverse children. If they don’t feel safe going into school, it is not about fixing the child, it is about fixing the environment.”

Gap is gravely concerned about what the reopening of the country is going to mean for the children and families with whom it works. “It is a difficult time for charities at the moment and I would urge people not to forget these children are going to have increased anxiety, more depression; the rates of suicide ideation and depression in the autistic community are already five times higher than in the typical population.

“We are going to be dealing with the effects of this literally for years to come,” she adds, “and Gap needs to be there for families.”

The importance of July Provision as a "bridge back into education" for a lot of children cannot be over-estimated, says Laura Crowley, director of educational support services at the Shine centre for autism in Cork.

When lockdown came, its early learning unit, which caters for 18 children every day in group settings and one-to-one support, put huge work into creating a portal online for parents to access, with videos on how to work with their children at home.

The unit’s staff were available by phone and online to support them through the lessons “but, in essence, it was down to the parents, unfortunately, to carry out those lesson plans”. It has been extremely hard on parents, she says, as a lot of the families Shine deals with have newly diagnosed children or children in the early years unit and “that is the most critical time for development of language and academic skills. Those kids have been without one-to-one attention from qualified teachers now for a number of months and that is a big loss to our families who access help from us.”

The unit is preparing for a return of children from June 29th, using a pod system, while otherwise “we’re all trying to come to terms now with how we adapt and grow services without contact, as that is going to have to be the way forward”, says Crowley.

Getting them back to school now will be a huge difficulty for parents and stress for the children

“While we will be making all these changes, we won’t have the same fundraising income to put in the changes we are looking at.”

She knows there are a lot of families in crisis, with the main difficulties for their children with autism being anxiety and a regression in skills. “Our children a lot of the time can’t understand why they can’t go here and go there. That sort of frustration can bring up a lot of new behaviour, which parents may have not seen before and that can be frightening.”

Now, as they re-enter the world, children who had underlying anxiety before the pandemic may have that anxiety exacerbated and be less likely to want to go outside, because they know about the virus making people sick and causing deaths. “Getting them back to school now will be a huge difficulty for parents and stress for the children,” she adds.

Yakub is really hoping to make some new friends when he starts in his mainstream secondary school, which has an ASD class that he can join if he needs the extra support. Aware of her son’s social awkwardness, as well as the exceptionally long break from school, Dorota anticipates it will be difficult for him. “My main concern is that when he goes back in September, his anxiety will rise and he is an anxious child anyway,” she says.

Her “dream come true” would be if the summer programme could be in the new school, she says, so that Yakub could become familiar with the surroundings. He has sensory issues and going into a new place will increase his anxiety levels.

Even wearing the new uniform is likely to be a challenge but it’s serendipitous that it comes in his favourite colours of black and red. “You are always looking for a starting point,” adds Dorota, “which you can catch and build on.”

School-based July Provision would ‘give him the reminder of the routine’

The firm belief of five-year-old Cathal Farragher that home should not overlap with school has been a challenge for his mother Fiona, who has been trying to homeschool him since the lockdown began.

Pre-verbal with some sensory issues, he was in his third and final year of an early intervention class in Tuam, Co Galway when his preparation for starting as a junior infant in an autism spectrum disorder (ASD) class in a new school this September was cut short. He also lost all the occupational therapy, speech and language therapy and psychological services that are entwined in the early intervention programme.

“As time has gone on, he has regressed in a few areas, mainly because of the lack of school routine,” says Fiona. Her son finds it hard to settle to school work, which he reckons should be done at school, not at home.

That’s why school-based July Provision would suit him best. “It would give him the reminder of the routine.”

In recent summers, Cathal did two weeks of July Provision and then over the next six weeks would participate in summer camps organised by the Galway Autism Partnership, as well as mainstream swimming camps.

“He is an active little boy,” Fiona says and while she has been going for regular walks with him, they look forward to returning to local playgrounds, which he loves. Even just going on a swing is a huge help with his self-regulation.

Fiona hasn’t had a chance to buy his new school uniform and she knows introducing him to the wearing of it will take a while. The feel of it or, say, the collar in a polo shirt, might annoy him, as he would normally wear round-neck shirts.

However, his teacher has said it won’t be a problem because the school will be relaxed about the wearing of correct uniform as many of the children with ASD have an issue with it. “We will go as far as we can; you just avoid distress,” says Fiona. “As long as he goes [to school], we’re winning.”