Last year was a pivotal year for us. 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.
We started reading more about autism and my husband Kelly realised that he had similar traits. We had mentioned over the years about whether or not Kelly was autistic but never thought anymore 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 terms were still used when diagnosing them, they would have 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.
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. Kelly is all of these things and more. 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 he’s not just fed up with me chatting so much!
So many positives
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. Autistic people are super sensitive and despite what many people think, my two are really aware of others 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 I 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 as time has gone on, as I did generally worry he would become acrophobic if he didn’t. 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 autisitc 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 can. 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 be 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
I’m not sure what like will be like coming out of lockdown. The measures are being reduced slowly, but we are still chilling at home and just going out once a day. Thankfully neither child is being required to go back to school. Even if they were, we wouldn’t be sending them. We will just have to wait and see as the weeks go on.