What Lockdown Life Has Been Like For Our Autistic Family

Last year was a pivotal year for Kelly and I. Both of our children (now age 8 and 10) were diagnosed with autism spectrum disorder (ASD). I’m not a fan of the term ‘disorder’. More people are using autism spectrum condition now, which is much nicer.  Autism is a spectrum condition. The saying goes ‘You’ve met one person with autism, you’ve met one person with autism.’ Some autistic people need little or no support. Others may need help from a parent or carer every day.

Lightbulb moment

We started reading more about autism to understand the children. Kelly realised that he had similar traits. We had mentioned over the years about whether or not Kelly was autistic as he had some traits, but never thought any more of it. We talked about the merits of getting a diagnosis as an adult.  After all he had been autistic for 44 years. Kelly decided that he wanted to find out one way or another. He was diagnosed in December 2019 with Asperger’s Syndrome, just like the children. The actual diagnosis of Asperger’s Syndrome hasn’t been used since 2013, but on Kelly’s report it does say Autism (Asperger’s Syndrome). For both the children – the psychologist said if the term Aspergers was still used, they would have been diagnosed with Aspergers too. I wanted to clear that up, as some people are very sensitive about the term Aspergers.  It’s really helped the children, knowing that their dad is autistic too and that he understands them. A lot of parents I speak to with autistic children, do start to wonder if they have autism too, as it can run in the family. 

Myths

There are so many myths around autism. That people can’t have a sense of humour, don’t understand or get sarcasm, take things literally or aren’t thoughtful or considerate which aren’t always true. Both the children and Kelly have an amazing sense of humour! Kelly can be a bit abrupt sometimes with people that don’t him and he really doesn’t like small talk. I on the other hand, love it!

We’ve together for so long now (19 years this November) that’s it’s great knowing why he does the things he does. I used to hint at things like saying the bin is full. His reply was ‘oh is it.’ When I said it needed to be emptied he just said – well just ask me and I will do it. So it’s made communicating much easier. There’s no room for ambiguity.

I also understand that like the children, he also needs downtime to recharge. So I’m more sympathetic now, knowing there is a reason and that he’s not just fed up with me chatting so much!

So many positives

Even though, it can be really tough, there are so many great things about being autistic. The Girl With The Curly Hair is an award-winning social enterprise founded by autistic author and entrepreneur Alis Rowe. She has some great examples of reasons why it’s really positive being autistic. Autistic people are super sensitive and despite what many people think, my two are really aware of other people’s emotions.

Trying to homeschool during lockdown

Our daughter has always wanted to be homeschooled. She’s asked us for years. So now was her time to shine! At first like a lot of parents, we produced a timetable. We quickly realised that we couldn’t and wouldn’t want to sustain that and it wasn’t healthy for either of them. Our son hates leaving the house, he’s told us a few times since we can’t go out that he’s living his best life – in his own words! 

He’s now got the perfect excuse to not go out. We are making him come on the dog walks and he has got better going out, as time has gone on. I did start to worry he would become acrophobic if he didn’t start going out. At first he refused to leave the house, as he was so worried about catching Coronavirus on our daily walk. Once again, we explained everything in detail and he was reassured. He doesn’t love the walk, but he understands the need to walk our dog.

The wrong spoon

When I think about it, so many areas of our life are so stressful but it’s normal to us, like it is to many autistic families. Like finding the exact spoon for a drink. The wrong spoon, can cause a meltdown. It’s not about spoiling or pandering to the children. It’s about them trying to control the areas of their lives, that they are able to. Like having the right spoon. Sensory processing issues are huge for us and massive triggers. Not all people with autism have sensory issues but it is common. Everything from the way socks feel, labels in clothing, things feeling scratchy. It’s not a matter of being difficult or overreacting, with sensory processing disorder, people literally feel pain from a scratchy label. Yet to me, I would just find it annoying.

I can’t get no sleep

Sleep is a massive issue still. Our son still doesn’t sleep through the night and hasn’t since he was born He wakes once or twice a night. Our daughter does sleep through the night but it can take her at least 2 hours each evening from once she’s in bed, to fall asleep. She says her mind is like a whirlwind that won’t stop. We’ve tried everything – yoga, relaxing music, baths, cherry juice, you name it! We’ve just referred her to CAHMS, so I’m hoping they can finally help.

Coming out of lockdown

As life starts to go back to ‘normal’ in the loosest sense of the word, we are still chilling at home and not going out tons. It’s really hard as it’s the summer holidays and we are torn between days out and wanting to be safe. We did do a trip to the beach which was lovely but we spent a long time planning it to make sure it would be really quiet.