Five Things My Children Have Taught Me About Autism

Earlier this year two of my children were diagnosed as Autistic. It took us a long time to reach this and it was a huge relief and celebration for all of us. We finally have the understanding we need as a family to help Oren and Rudi to live their best lives and it’s already made a huge difference.

We still have really hard times but we are in a completely different position to this time last year. I have learned so much, not just from the books I have read and the workshops I have attended but also from my own children.

I thought it would be useful to share five of the things my children have taught me. I believe the more we all know about Autism and Neurodiversity, the better our world will be. My children, like other Autistic children and adults, have super powers and they have the potential to do something significant in their futures but only if we all support them and make our Neurodiverse world and easy place for them to thrive in.

Introducing small things can make a big difference. A few months ago we introduced a white board to our fridge. Each morning I write down the plan for the day from morning until bedtime. It has been a huge life changing thing for Rudi. It takes me about a minute, especially in the week when many of the things are the same each day, but it changes everything for her. Our mornings have become so much calmer. She gets dressed every morning without a battle for example. Before the arrival of the white board it felt like it was a huge shock and surprise that she had to get dressed for school each morning. When your child is 6 years old and has been wearing this uniform since we went to nursery at age 3, it’s hard to get your head around.

I wish someone had told me years ago that if I wrote it down (or drew a picture before she could read) that she would get dressed straight away! It’s this kind of stuff that I find so brilliant. I’m not Autistic, so I would never have thought of it. I do love lists though!

Oren doesn’t need a list like this one but we are working on an after school timetable for him to help him to prepare for his secondary school transfer next year and all the homework that will start straight away. I will share that soon because it’s another simple thing that I think is going to be a game changer for him.

Pay attention to energy levels. This one is so, so important for our family and something I am learning to pay big attention to. My two neurotypical children obviously get tired. Life is busy and school expects a lot of children but apart from a bit of grumpiness they can muddle through it and get up the next day feeling lots better. I am also way more aware of when they will be tired. It’s more obvious to me.

My neurodiverse two really, really struggle with energy levels and the consequences of them getting overtired or overloaded is huge. I am learning all the time about pacing family life, saying no to things when I know they will need down time and helping them to ask when they need time out. Headphones, ear-defenders, iPads, dinner away from the busy family table and time in quieter places in the house are all so important to use whenever necessary.

Oren has been explaining to me about down time. Something we all need but something that he definitely needs more regularly and sometimes urgently.

My daughter masks her Autism all day at school, so when she gets home she is usually completely overwhelmed and exhausted. I know this, so I’m really careful about playdates and other after school activities.

Predictably Unpredictable. This is the hardest thing for me to get my head around but also one that makes me smile the most! There is no doubt that Oren and Rudi need structure and routine. They want everything to be predictable. But they can be so unpredictable themselves and much more so than my two neurotypical children. I find this fascinating and often so frustrating but it also makes me smile. Yes, indeed they need me to be really predictable and to help create a life for them that is predictable as possible but they have never said anything about being predictable themselves!

Clear language is important. I should have saved some examples for this one because as I’m writing this I can’t think of one! But I do know that I have to be so very clear in the language I use. They both take whatever I say literally, which is a tricky thing when our language is full of subtly and non-literal phrases. I find language fascinating, so this is always a good challenge for me. TV can often be hard for Rudi to follow, especially if there are jokes or sarcasm involved. Jokes are really hard for her but Oren loves creating them, especially with word play. Just because you are Autistic, doesn’t mean you are the same as your Autistic sibling, and that is also really important for me to remember.

Touch is both really hard and really necessary. As a mother and someone who is really tactile, I find this so very hard. When my children are upset I want to give them a big hug but when a meltdown is happening they very often cannot cope with any physical contact until the worst of it is over. This is always hard for me, especially when we are out in public and I have the added pressure of other people thinking “why on earth is that mother not giving that child a hug” Or even worse “what is that woman doing do that child. Are they in danger!” Rudi has shouted “Don’t touch me” when we’re out in public so many times that I’m surprised no-one has ever questioned what’s going on.

At other times they actively seek really tight hugs or back and foot rubs, and can’t seem to get enough physical contact.

There is so much to think about, learn, read and do but I am just so, so pleased that I can help. They are super creative, intelligent, wonderful children with a bright future ahead of them as long as they have the right tools and support around them. I’m glad we’ve started the journey of helping them get that. xo