Updated: Mar 27
The pandemic has impacted everyone’s lives – however, where others have been able to get by one way or another, those with autism including their families, have felt completely stranded.
This article includes a special report published by the National Autistic Society (NAS) in order to help us better understand the impact of coronavirus on autistic people and their families, and what can be done to ensure that they aren’t left “stranded” like this in future.
“Left Stranded” – reflecting on and learning from the report’s findings
The impact of coronavirus has been devastating on autistic people and their families, to say the least. Consider the following statistics from the June-July 2020 NAS report which paints somewhat of a gloomy picture:
• Compared to the general public, autistic people are 7 times more likely to feel chronically lonely and 6 times more likely to have low levels of satisfaction in life.
• Autistic people affected by the lockdown now require support all the time, with 9 out of 10 autistic individuals seriously worried about their mental health.
• In fact, 1 in 5 family members ended up reducing their work hours due to the homecare responsibilities they had to undertake.
• A disturbing 7 in 10 parents said their autistic child had even more difficulty understanding or completing school work, and around 5 in 10 parents said their child’s school performance suffered tremendously.
These are just some of the findings from the NAS report between June and July 2020 which saw responses from 4,232 people – 1,810 from autistic people and 2,422 from their respective family members.
The societal injustices and inequalities autistic people and their families have been facing isn’t exactly new. Many support organisations have been proactive in highlighting them over the years, although the pandemic has completely uprooted these issues and laid them bare.
In order to better understand the needs of autistic people and how we can help provide them with the love, care and support they need, it’s important to understand how the condition affects those who have it.
Autism is a disability for life. It affects how people communicate or behave in a social setting. There are, on average, 700,000 autistic people in the UK. Difficulties vary and often include difficulty communicating and socially interacting with others like regular people do.
These difficulties can range from finding it very difficult just to utter a sentence, hold normal conversations, and delays in understanding or processing information, to making friends or finding love. You may have noticed how autistic people often engage in repetitive behaviours like rocking, repeating specific sounds or hand flapping – some are entirely involuntary.
Autistic people can also experience extreme anxiety and uneasiness when they have to deal with sudden change. Furthermore, they also tend to experience sensory issues – such as reacting to bright light, environmental noise or certain smells in a way that can best described as painful and distressing.
Since the pandemic many autistic individuals have felt very isolated, with the postman being the only person they have got to see. A family member of an autistic person said that they were experiencing debilitating effects owing to their autistic son’s mental health decline and increasing stress levels – so much so that it lead to anxiety and panic attacks in her husband. The couple has had to take more sick leaves to tend to their son, especially with no support from the government or otherwise.
Another parent said that mental health services are no longer being extended to her autistic daughter since the pandemic, who was due to start specialist therapy which has now indefinitely been postponed.
Going out and “living a normal life”
Even before coronavirus hit the world, going out and having a social life was very challenging for those with autism or a learning disability. In a 2019 survey, 1 in 8 autistic individuals and 1 in 6 family members were asked to leave a public venue because their child or family member exhibited autistic behaviour, probably because it made the general public feel uneasy. And unfortunately, since the lockdown restrictions are back, public venues are now even more unwelcoming to autistic individuals.
While the lockdowns have been necessary to try to reduce the spread of the virus, it has led to increased fear, stress and anxiety in autistic people, who have felt overwhelmed and abandoned due to the rapidly changing and often unclear advice together with the lack of appropriate support from the authorities or government bodies.
There was not many good quality services for people with a learning disability and autism before we entered a global pandemic and then there was just nothing. No support mechanism or system in place for people who needed it.
People with a learning disability and autism are often neglected, overlooked, forgotten, sadly, in so many ways. We feel it should be the role of professionals to speak up for any person who is unable to speak up for themselves.
It is clear that the pandemic has placed a tremendous amount of stress on people with a learning disability and autism and also their families and care givers. At Nice 2 Meet Ya, we want to play our part in ending this isolation pre and post covid 19 and help our members become a part of a community where they feel valued and understood.