‘They were worried that they would catch it and die’

The sad reality for children coping with autism during a pandemic

Children with autism have been left without their educational and medical facilities, making the lives of families much more difficult to manage since the start of lockdown.

Left in the dark and unable to understand why. This is the sad reality for so many people with autism.

James Hunt, who writes a blog, ‘Stories About Autism’, has two autistic children, Tommy and Jude, who were both frightened and confused when lockdown was announced as their lives changed completely.

“It just wasn’t possible to explain to them why everything had suddenly stopped and why they couldn’t go anywhere anymore.” He said.

Children with autism rely heavily on structure and routines to understand their day ahead. When schools closed suddenly, due to Covid-19, these children could not comprehend why.

“It meant months of constant caring, no breaks, all whilst dealing with the fears of the pandemic,” Mr Hunt said.

Mr Hunt’s family are not alone.

The impact of Covid-19 has been incredibly problematic for those with autism and their loved ones. Since the first Covid-19 case was discovered in November 2019, the world has been ever-changing with continuously altering lockdown restrictions, new societal norms and vital hygiene routines.

Autism is a lifelong developmental disorder which affects 700,000 people in the UK alone. People with the disability are not able to adapt easily and struggle with social interactions and communication, making it more difficult to keep them informed and recognise when they have understood teachings.

The effects of no education and services

The lack of support services has led to John McGinley’s 7-year-old, autistic son, James, regressing two years in terms of development. Due to professionals being taken from front-line support, his parents tried their best to fill in the gaps, but without any expert knowledge it simply was not enough.

Mr McGinley’s older autistic son, Joseph, aged 13, has developed extreme anxiety around Covid-19 and now has a hand washing compulsion and constantly watches the news as he worries about himself and his family catching the virus.

“We have sought support and help but once again, the services are just not there,” Mr McGinley says.

The National Autistic Society (NAS) revealed that 9/10 autistic people worried about their mental health during lockdown, and due to the lack of services available many couldn’t receive treatment. To combat this, Mr McGinley created @Autismdad67 on Twitter, where he posts about his own experience of caring for his two autistic children, as well as advice and support offered by different organisations.

Source: @Autismdad67 Twitter

The director of external affairs and social change at the National Autistic Society, Jane Harris, said: “If autistic children don’t get speech and language or occupational therapy support or short breaks, their futures could look very different. Some may end up going into residential care as their families wouldn’t be able to care for them without help.”

Ms Harris explained that without necessary education, many autistic children could suffer less good communication or independent living skills which could cost more in social care services in the long-term, which could be disastrous for them and their families.

Mental health

Janette Morrison, a special needs teacher at Bothwellpark High School in Glasgow, with 24 years’ experience, explained the detrimental impact of those children on the autism spectrum, when their mental health declines.

“Since lockdown, there has been an increase in incidents of self- harming (in her students), including head banging on hard surfaces, biting and scratching themselves or running away. Other pupils were more aware of the virus and were frightened that they would catch it and die.” She said.

Anxiety for pupils with autism spectrum disorder (ASD) often presents in challenging and/or aggressive behaviour. A report by the NAS found that 68% of family members said their autistic child was anxious at the loss of routine and 65% couldn’t do online work. To try and

reduce the impact, Bothwellpark High School was allowed to open for a few hours a day to offer pupils time in school with familiar staff and activities.

A lack of structure

For many autistic children, having their routine altered can have extremely severe affects. Riley O’Hare, 12, who lives in Glasgow has autism and a severe communication disorder. He relies heavily on his family and teachers for support.

When lockdown began, Riley’s special needs school was closed and both his parents, Angela and Brian, were forced to work from home, completely altering any structure that Riley was previously used to.

A difficulty faced by Mrs. O’Hare was the way her son could not understand why she was home but unable to play, causing Riley to walk in on her Zoom meetings.

To allow them the necessary privacy to work, ‘Riley Time’ was made. This was a new structure where at 1pm everyday he would spend time with his mother.

Getting Riley used to such a brand-new structure was extremely difficult for the family, until his mother discovered that writing a timetable plan for each day in her notebook aided Riley in understanding what was coming, making him much more comfortable.

A report by the National Autistic Society, Left Stranded, found that 1 in 5 family members had to reduce work due to caring responsibilities, something many families cannot afford to do.

When routine is altered, it heavily affects the behaviour of autistic children.

“Some children were so distressed that they smashed up their homes, attacked their parents and siblings and even ran away putting themselves at harm as they didn’t have road sense or awareness of dangers,” Ms Morrison said.

The autistic mind

Communication disorders are a common symptom in people with ASD. Riley O’Hare’s is severe, and he has adapted to communicating through his DVDs, his favourite being Thomas the Tank Engine.

“When Riley refers to a certain time of day, he will often use one of his DVDs. He’ll use dark DVD covers to refer to night, and lighter ones to refer to the daytime, as well as associating different titles to different actions throughout the day.” Mrs. O’Hare said.

Source: Angela O’Hare

The difficulty with a communication disorder is trying to understand how much those suffering from it comprehend, as well as trying to educate them on what is happening. Mrs O’Hare said it was exceptionally difficult to help Riley recognise why he was suddenly

home all the time, why he needed to wear a mask and social distance.

Evidence has shown that the autistic mind processes everything differently, with their senses playing a major part. What sufferers can hear, smell, feel and taste can often be processed differently in somebody with ASD, Ms Morrison explained.

Ms Morrison said some sounds can be painful, a gentle stroke on their skin may upset them; but a heavy squeeze can make them feel secure and happy.

According to the NAS, 70% of people with autism worried about wearing a face mask. Due to this, abiding by some of the lockdown rules can be difficult. Something which may seem simple to one person can be a great difficulty for another. This along with social distancing and constant hand washing can become stressful for a person with autism.

“Riley has always hated having dirty or wet hands and encouraging him to wash them or sanitise after being outside is a huge difficulty and stress for us all.” Mrs O’Hare says.

The stockpiling issue

Another problem for the O’Hare family was the stockpiling issue at the beginning of lockdown. As people began buying in bulk, supermarkets began restricting how much you could buy of a product.

Unique diets are common in people with ASD and in Riley’s case, he will only consume Petit Filous yogurts, which his family would stock up on each week. Once restrictions came into play, Mrs O’Hare was forced to contact Riley’s consultant to obtain a note which would highlight Riley’s needs and would be passed to the store manager in order to allow them to break the quantity rule.

The future

It is clear that more support is necessary to help those with autism and their families during sudden and difficult circumstances in the future.

Jane Harris from the NAS said: “The most urgent action the government should take is to give enough funding to the right mainstream and specialist education and health and social care services for those with autism.”