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One little autistic boy’s coronavirus story should help us all

Steve Topple by Steve Topple
31 March 2020
in Analysis, UK
Reading Time: 6 mins read
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With around 20% of the world’s population on coronavirus lockdown, many people might be struggling to cope with the drastic changes in lifestyle. But one little boy’s story may offer a message of support to many people. Because lockdown is all the more daunting for him, as he’s autistic.

Autism Awareness Week

Autism Awareness Week has been running since Monday 30 March. As the charity Autistica says:

Autism changes the way people communicate and experience the world around them.

[It] is a spectrum of developmental conditions, including Asperger’s Syndrome.

Every autistic person is different. Some are able to learn, live and work independently but many have learning differences or co-occurring health conditions that require specialist support.

The charity notes that autistic people often have:

  • “Delayed or absent speech”.
  • “Problems listening, concentrating and understanding”.
  • “Frequent repetition of words and phrases”.

They also sometimes take things people say “literally”. Autistica says autistic people sometimes have:

  • “Difficulty sensing and interpreting people’s feelings”.
  • “Difficulty expressing feelings”.
  • “Over or under sensitivity to sound, touch, taste, smell or light”.
  • “Rituals or repetitive behaviours”.
  • “Disliking changes to routine”.
  • “Difficulty making friends and socialising”.

And while all these could be challenging issues, that isn’t the full story for many autistic people. For example, as the charity Ambitious about Autism notes:

People with autism can be very compassionate and care deeply about others – in fact, the clarity of vision that autism sometimes gives means that some people with autism are about the most principled and socially conscious people you’ll ever meet. What people with autism struggle with is fitting their feelings of sympathy and caring into everyday interactions.

This doesn’t detract from the fact that some autistic people may be struggling with the pandemic. But one little autistic boy from Scotland has got his own way of dealing with it.

Meet Alex. And Alex.

Alex Tiffin is a writer who runs the Universal Credit Sufferer website. And as he tweeted on 31 March, his 5-year-old son Alex is autistic:

It’s World #AutismAwarenessWeek

My five-year-old son Alex has autism and he’s finding the UK lockdown especially difficult.

So, The Canary caught up with Tiffin to find out how Alex (junior) is getting on during the coronavirus lockdown, and how the whole family is coping, Here’s Alex with his brother:

Alex Tiffin and his brother

Alex is autistic but also lives with underlying health conditions. So, this has meant Tiffin and his partner Nikki have had to put in place additional protection measures from coronavirus. He told The Canary:

My son had to celebrate his 5th birthday in self isolation and he’s starting to struggle being stuck in 24/7. All this makes it even more difficult to try and explain to him.

Missing nursery

What’s compounded the challenges for Tiffin’s family is the change in routine. Alex loves going to nursery. But due to coronavirus this has had to stop. Tiffin explained to The Canary that nursery has been a great support for Alex, and has helped his development. But he said the change has been tough:

Now he can’t understand why he’s being told he can’t go and see his friends. Add in he’d just started an extended transition period preparing him for school in August, and he thinks he’s done something wrong.

I’m finding it heartbreaking as he gets so sad, and then frustrated, and then sad again, when I have to tell him there’s no nursery or school this week.

All this means little Alex is quite isolated. This is a good example of a situation that some, but not all, autistic people could find challenging. And that’s an important point Ambitious about Autism makes. It says:

As a popular saying goes, if you’ve met one person with autism, you’ve met one person with autism. Autism is a condition, not a personality, and people who have it are as different from each other as everyone else. Yes, they may have some things in common with each other – but then, you could say the same of neurotypical people or of people in general. We’re all individuals, and that’s true of everyone, autistic or not.

Many people’s experience

But for Alex, it’s difficult. Tiffin said:

In some ways I think I’m more worried about the effect isolation is having on him than I am him catching the virus. To compound things, I can’t even take him to a shop or for a drive in the car because of the restrictions, which we know are there to protect us, but a five-year-old has no understanding of.

The family are resilient, though, and Alex is still doing well. And as Tiffin noted, they’re not the only ones in this position:

I think any parent of a young child, learning disability or not, will be having a tough time.

Children with additional support needs have been abandoned by authorities since lockdown. Now parents are being left with no help or support when perhaps they need it most.

This is perhaps the bigger picture. The government has cut special educational needs and disability (SEND) funding by 17% in England since 2015. Moreover, in June 2019 the National Education Union said that over 8,000 children and young people with SEND were:

‘awaiting provision’ for a school place, and have no access to any type of educational provision at all.

Also, countless more get excluded from schools. So while authorities may be letting children with SEND down during lockdown, the backdrop is one of a system in crisis. This is a damning indictment of how authorities view, for example, autistic people. As opposed to giving them the support they need to flourish, they’re viewed as more of a problem.

“Guinea” is helping

During lockdown, Alex and his family are all making the best of it. And he still has company, not least in the form of his hamster “Guinea”:

Alex and his hamster Guinea

And Tiffin makes a broader point about autism in general. He says:

World Autism Awareness Week is something that’s really important. If you take a small amount of time to learn about it, perhaps you will understand better what parents and autistic people are going through, not just right now, but every day of the year.

“Proud”

As with disability and mental health, the onus shouldn’t be on autistic people to fit into society. Society and neurotypical people should make it truly accessible for everyone. Sadly, even in 2020 that’s still not the case. But for now, little Alex is managing amid a chaotic situation. As Tiffin told The Canary:

Although it’s hard, he is doing well when it comes to helping his younger brother. He’s doting on him and it’s almost like he’s better when helping him. Although it’s hard, I’m really proud of him as he is trying really hard to understand.

It’s a tough situation that we’ve just got to make the most of.

Which is what all of us are having to do. So, maybe Alex’s ability to cope should stop and make the rest of us think about our own responses to the pandemic.

Featured image and additional images via Alex Tiffin (used with permission)

Tags: autismCoronavirus
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