High function autism. It’s a term we hear a lot these days. We live in a time where autism and it’s related disorder and conditions are widely diagnosed among children and adults. Not long after my son’s diagnosis, a wonderful and well-meaning friend said to me ‘it seems like everyone is being diagnosed with autism these days. I’m sure he’ll grow out of it’. In the early days of Arlo’s diagnosis, I wasn’t the best advocate for autism. I’ve still got so much to learn, but I’d like to talk a little about what high functioning autism looks like to us, and give some suggestions of things NOT to say to a family of a child with autism.
So how does high functioning autism look for us?
An extreme need to control
This is a big one for Arlo. He wants to control everything. Not having control is uncomfortable for him. When he’s not comfortable he appears like he’s being a total brat! He isn’t. He’s just so intensely out of his comfort zone that he goes into fight mode. It’s exhausting! We’re working very hard with him and his therapists to help him relinquish control.
Difficulty expressing feelings
The further we get into this journey the more I see Arlo’s difficult expressing feelings. He’s either happy or mad. Nothing in between! All negative feeling appear like anger. I can’t imagine being in his little brain, it must be so hard some days.
Arlo is intense. As he gets older, kids start to notice. Older kids are amazing with him and he’s drawn to them. He has a group of teenage friends in our neighbourhood that he entertains at every party we go to with them! But relating to peers of his own age isn’t easy. Partly his need to control causes issues because kids don’t want scripted play. He is learning social cues and body language is alien to him. If he likes someone he’s up in their grill to the max! He just doesn’t see that not everyone wants to be so close to him!
I’ve never seen or felt love like Arlo gives. His soul is so amazingly beautiful. I can’t believe I have something that loves me so much. But that love really only gets shown to me and my husband (and occasionally his brother – see my final point!) I know he loves other people in our family because he tells me all the time. They just don’t get that level of intensity yet.
Arlo noticed the little things. He can tell when I change my hair. He sees the world in a unique way that is so hard to explain but so amazing to experience through his eyes. This isn’t always a positive trait. We don’t do any new things without a heavy amount of discussion and priming. He needs to feel like he has control, and new situations don’t allow him that.
A unique sense of humour
This boy is hilarious. He makes us laugh so often, and has done since he was tiny. He’s just funny. I don’t know where he gets the humour from. It’s grown up humour with a pinch of sarcasm!
Packed with personality
Adults who meet Arlo love him. So many people have such a soft spot for this boy because he’s awesome. I’ve never known a child with such a unique personality. I hope as he gets older, he finds someone to love his quirkiness.
Sibling rivalry on steroids
Some days his brother can’t even breathe without annoying him. I can’t compliment his brother without him wanting one too. It can be really intense having a sibling with high functioning autism. We sometimes struggle to find the balance between making life as easy as possible for Arlo and ensuring his brother isn’t made to suffer. We don’t always get it right and it’s hard. Arlo’s autism definitely affects their relationship and that makes me really sad.
Some things NOT to say to a parent of a child with high functioning autism
- We’re all a bit autistic, aren’t we? Actually no, we aren’t. People’s quirks do not make them autistic. Autism is a neurodevelopmental condition. It isn’t something we all have.
- Oh, I’m sure he’ll grow out of it. No, he won’t. It’s a part of him, just like his beautiful curls and silly laugh are a part of him. We also don’t need to feel like it’s something he should ‘grow out of’ He is Arlo, he has autism. We don’t need him to change, so nor should you.
- Maybe one day they’ll find a cure. If they do, then good for them. We’re not looking for a cure. There isn’t anything WRONG with him. He’s just got a different outlook to us. That’s fine with us. ‘Curing’ him would remove some of the best things about him.
- You need to learn to control your kid. PLEASE please do not judge a parent of an older child having a meltdown. Give me a smile, throw me the Mockingjay salute. But don’t assume my kid is naughty, or I am a bad parent.
- Oh, he has autism? He must be very high functioning? Yes, he is. But high functioning autism does not make his autism easier to deal with for us as a family. Having a child with high functioning autism is both amazing and exhausting most of the time. We don’t worry about him less because he is high functioning.