It’s been a week since our 8-year-old daughter Charlotte was diagnosed with autism. I’ve been reading about it to try to understand as much as I can. The lightbulb moments keep on coming. Turns out parenting autistic children and therapeutic parenting of adopted children are pretty similar, but there’s still a whole load of stuff to find out about.
All those little things she does that we thought were either attachment issues or ‘just Charlotte’ seem to be cropping up in the reading I’m doing and in conversations with other parents of autistic children. I’m finding it fascinating, reassuring, and really useful to be able to see how it all fits together. I’m really grateful to my friends with autistic children for their help as I get my head around it all.
Watching the same minute of a programme on iPlayer over and over? Only wanting to read specific bits of books? I thought that was just her. Nope, normal for autism.
Completely freaking out when in close proximity to raw tomatoes and berries? Uh-huh, that could well be autism too. It’s a texture thing.
The protracted bedtime routine? Needing the blanket put on a certain way, the door left ajar a specific amount? Turns out that’s not just normal procrastination.The protracted bedtime routine? Needing the blanket put on a certain way, the door left ajar a specific amount? Turns out that’s not just normal procrastination. Click To Tweet
The daily jumping and spinning beyond an amount that would make most people exhausted and dizzy? Not just youthful exuberance. Autism.
The chewing. She chews clothes, toys, bedding, curtains(!), bits of paper, Blu-tack… you name it. We’d been told that was an attachment-related anxiety thing. Well, maybe. Or maybe this is her form of stimming.
The collections. Sticks. Stones. Feathers. Daisies. All. The. Time.
Spending time in ‘Charlotteland’, her own little world. Some friends with an autistic daughter call this her ‘screensaver’ mode. The first picture I saw of the girls when we were looking for a match? I can see now that her little face in that photo is a bit zoned out, even though she is looking at the camera (something she still struggles to do).
Not coping with eye contact. She generally manages eye contact with me better than with other people. She’ll shout at Pete if he looks at her ‘too much’ (often this means ‘at all’). Even looking in the rear-view mirror when he’s driving can be misinterpreted as him looking at her and trigger a meltdown. Sometimes she does the same with Joanna, though it’s rarely directed at me. At school her failure to make an expected amount of eye contact has been assumed to be ‘not listening’, though she is almost always taking everything in. Now we have an explanation for that we hope she won’t get picked up on it so much.
Misinterpreting facial expressions. Especially Pete’s neutral face, which she interprets as grumpy or cross. We even get shouted at for smiling benignly, because she thinks we’re laughing at her. We’d been told that this issue was the result of her birth parents having depression and generally not engaging positively with her. There may be some truth in that. But also? Autism.
Hypermobile joints. Our OT identified these in both the girls, especially in their wrists and thumbs, making writing for long periods more tiring for them than the average person. I had no idea this was frequently associated with autism. Because no one tells you this stuff.Our girls have hypermobile joints, which makes writing tiring. I had no idea this was frequently associated with autism. Because no one tells you this stuff. Click To Tweet
The difficulty she has parting with her Kindle. Screen time is like a sedative for her. It’s an engaging, contained world over which she has control – selecting programmes, skipping backward and forward, and generally offering a safe place for her to be where nothing is demanded of her. I can see why leaving that zone for the realities of eating a meal or getting ready for bed is hard for her.
Writing little notes. I didn’t realise this was an autism thing until I went to talk to a friend whose son is autistic and in Charlotte’s class. We’d been comparing notes on meltdowns and the school’s SEN provision for a while, so when we got the diagnosis I asked if we could meet up and I could pick her brain about local support. She mentioned that her son had written a note about his low self-esteem. I said this was something Charlotte does too (usually ‘I want to be in the bin’).
Preferring to communicate with gestures and noises. I thought this was mainly about attachment and regression and wanting to be babied. This is the line that we’ve always been given. The FASD clinic found out that actually her language processing isn’t great and she finds visual communication easier – something that’s incredibly common for autistic people.
Licking things. Charlotte has been known to lick all manner of objects. My face. My jeans. The school railings. Books. The TV remote control. Doors. Chairs. Random stuff she finds in the street. Seeking sensory feedback in unusual ways like this? Yup, not unusual for autistic children.Charlotte has been known to lick the school railings; the TV remote control; doors; chairs; random stuff she finds in the street. Seeking sensory input in unusual ways like this is not unusual for autistic children. Click To Tweet
Not coping well with choices. If we give her a completely open choice, that’s often too overwhelming for her. Yet if we offer A or B, more often than not she’ll want C.
Not coping with loud noises. Our girls have never coped with fireworks or thunder very well, and I chalked this up to just being more easily frightened than average because of early trauma, hearing a lot of shouting, that sort of thing. But even the noise of a classroom can also be too much for them. Joanna is wired to talk incessantly. Charlotte often wants silence. You can imagine how well that works in the car or at the dinner table.Joanna is wired to talk incessantly. Charlotte often wants silence. You can imagine how well that works in the car or at the dinner table. Click To Tweet
Turn-taking. Both in conversations and in games. Charlotte is just not very good at waiting her turn. (Nor is Joanna, to be honest, though it is more pronounced in Charlotte.) However equitable I try to be in answering one question from one, then one from the other, if my answer to Joanna is more than one sentence, Charlotte starts making frustrated noises and trying to interrupt. Sometimes before she’s said it’s because she can’t keep an idea in her head while her sister’s talking. The FASD clinic results show that this is true: she struggles with her short-term memory as it relates to language. This also explains why she’ll ask the same question repeatedly, and won’t seem to have listened to the answer before she’s on to the next question. Not rudeness. Autism.
How did we miss it?
I’m still surprised that no-one picked this up before. We’ve talked about these things with so many professionals. I know (now) that there’s a lot of overlap with attachment issues and sensory-seeking, but no-one suggested autism screening.
I was looking out for the wrong stuff: lining up her toys, keeping food separate on her plate, having strong preferences for certain colours, disliking clothes labels, that kind of thing. That’s what I thought autism looked like. She doesn’t really do any of that. These things, though, happen daily.
I’m still learning about how boys and girls present with different issues and how broad the autism spectrum is. I obviously have a lot more to discover and am especially aware of the difficulties in distinguishing between the behaviours she can’t help and what is genuinely just trying it on and pushing boundaries. As far as I can tell so far, no-one seems to have an answer for that.
Learning more about autism
If you’re interested in learning more, this is my current reading list. Full reviews will follow as I finish them all!
I especially recommend ‘Autism: How to raise a happy autistic child’ – it’s accessible, pitched at a helpful level, and packed with information. (If you want to read my previous reviews of books about autism, you can find them here.)
If you have book recommendations, I’m always grateful to hear them – please leave them in the comments.