Our Royal Patron, Her Royal Highness The Countess of Wessex, joined us for a meeting via video link on Thursday this week, to mark World Autism Awareness Day. The Countess spoke to our Chief Executive, Caroline Stevens, autistic blogger James Sinclair, and mum to an autistic child, Emma Psalia, finding out about how they’re coping with the effect of the coronavirus pandemic on their lives and sharing tips and advice. They also discussed the importance of increasing understanding of autism.

The Countess who has been the Royal Patron of the National Autistic Society for 16 years, heard from the group about how people with autism and autistic families are coping, and how they are dealing with changes to routines and taking on new habits. The Countess and Caroline also discussed ideas for offering further support from the charity during this difficult time, including exercise tips and other resources to raise the spirits.

A huge thank you to Her Royal Highness, James and Emma for joining us for such a positive discussion. Here are some highlights:

Personal experiences

Caroline Stevens

My son Jack (aged 25) is autistic and has learning disabilities, sensory processing disorder, a sleep disorder and is non-verbal. He has a high level of support and lives in a care home full time.

Up until two weeks ago, he was in a good routine. But then, suddenly, the social distancing rules came in to place and his day services would were stopped. We understood that but Jack had been going to these day services for some time, everyday, and this gave him a huge amount of structure and routine.

The withdrawal of access to these services means his anxiety and stress levels could rise, and may mean he will revert to repetitive behaviours.

Last week, the residential home went into isolation. We normally see Jack every weekend but, all of a sudden, we cannot see him at all - and neither can his brothers and grandparents. I cannot begin to tell you how heart breaking this is, not being able to see your child, hug them or kiss them. Jack cannot use FaceTime or any video conferencing, so we cannot even use that. He can’t understand why his parents, brothers or grandparents have stopped visiting, and that is heart breaking. We know it is in his best interests but it is very hard on us as a family.

We’ve got some really challenging weeks and months ahead and we cannot even be there to give him a hug and say it will be ok.

James Sinclair

My experience is echoing a lot of the autistic community at the moment. The change is all around and is happening all the time. The nervousness sticks with me, usually I have time to recharge my batteries, but the change keeps coming.

The rules aren’t clear enough at the moment, like when we are told to stay in, I find it hard to know what is right or wrong. All shops have different rules, some shops have different zones, I don’t know what happens if you need to go into another zone or if someone comes into mine. I have got to the point where I cannot go into shops anymore, it is not worth it.

I feel like I am losing a lot of independence. All of my support networks have got me to a stage where I can live on my own, where I can work and do the shopping for myself. I am having to step away from a lot of these at the moment, with the constant changes, it is building and building, and it is not slowing. We are putting the messages out there, but with the autism spectrum being so wide, it cannot support everyone.

Emma Psaila

Ethan is five and in mainstream school. He is lovely, funny and quirky, and loves routine and structure. His world has fallen apart in the last week or so. At the beginning, he was cheering as he didn’t have to go to school. The idea, to him, was amazing. When we began homeschooling, he couldn’t understand, he does this at school, he doesn’t do this at home.

As the days have gone on, he is finding it harder and harder. The more anxious he gets, the more he resorts to repetitive behaviours, which comfort him. He likes to run around the living room pretending to be a steam train, which means it is difficult for him to concentrate on anything else.
Ethan is able to communicate with us, he asks when he can go out or when he can go back to Nanny’s house and he is getting really frustrated that we can’t give him a proper answer.

Social isolation for Ethan is lovely, he hates parties, crowds and seeing people. But my fear for him, when this is all over, is that he is going to have to go back into all these things which we have eased for him. And I worry about when he has to go back to school and how difficult that is going to be for him.

There are food challenges too. We usually go to a number of shops to get the correct food but now we are going to one shop, once a week, and things are running out and aren’t right for him. He says it is weird and he doesn’t like it, but it is hard to explain what’s going on.

It’s a muddle through for all of us.

How could the current situation help understanding of autism?

James Sinclair

We all need support and it is coming from the same space, the community is coming together and delivering the same message at the same time. People are listening, people are sharing different things. There is a great example of the mum on Twitter who needed McDonalds packaging and someone on Twitter helped her get them for her son. It is a great story and lots of people shared it.

Emma Psaila

I am part of lots of parents’ groups and there is a real sense of support from the community. We are constantly getting support from the National Autistic Society. The more people read, the more people will understand.

Caroline Stevens

We asked autistic people about the five things they wished the public knew. This pandemic is showing real life examples of the challenges that autistic people are facing. If we can get the five things across to people, we firmly believe everyone will be more understanding and supportive.

The biggest change would be if everyone had a greater understanding of what it is like to be autistic and starts proactively thinking how they can support autistic people in their day to day lives. If this could happen through World Autism Awareness Week and this pandemic, that would be a huge positive.

Further information

For information, guidance and tips around coronavirus, visit our resources page.