I mostly like to talk about Jack & Lily when it comes to autism, but today I’m going to talk about myself. I will be answering the question what’s it like being an autism Dad? It’s not a term I generally use for myself. Going around saying I’m an autism dad (or mum/mom) is not for me. But I wanted to open up a bit, and show you what it’s like to be a parent to two autistic children. I don’t want it to come across as having a moan about what’s difficult either. Sure I will have a look at the difficult things, but I have plenty of reason to be happy too.
Before I get started, these are my experiences with my autistic children. Every autistic person is different, the experiences we’ve had as a family wont be the same for everyone.
Family and Sacrifices
First of all, we have been pretty lucky to have an understanding and supportive family around us. This is not always the case. I’ve heard some absolute horror stories, of people being completely abandoned by their family. Just because their child is autistic, and that doesn’t fit with how they want to be perceived.
This has not been the case for us, but there have still been challenges, and sacrifices made. We have missed lots of family outings. This is due to Jack’s anxiety, we are always invited, but whether Jack will go depends on the situation. Where is it? Who’s going? And how busy will it be? The last major one was my brothers wedding. We tried to prepare Jack for it, the day before the wedding he tried his suit on and said he was looking forward to it. Then on the day of the wedding, he just flat out refused to go.
Having to split the family
I ending up going with Lily, who gets a bit anxious in busy places, but settles if she’s with people she knows. Ideally I wanted Natalie and Jack to be there, I was disappointed they weren’t. But you can’t let these things get to you, it’s part of being an autism dad. We have to do what’s right for Jack. I rang later to see if he would come to the evening part, but he still said no.
Several birthdays and celebrations have been missed, or one of us have taken Lily. It’s nobodies fault, that’s just how it is. They’ve not all been missed, Jack has been out for family meals at restaurants etc.. Why can he do it sometimes, but not others? My best guess is it depends where his anxiety is? If he’s been having a difficult time at school etc, he will be less tolerant.
Some families have real trouble ever doing anything, so again we don’t have it so bad. What you do need though is a thick skin, and if you’re like me and don’t have that, you need to develop it. Natalie has been around disability her whole life, so she was somewhat used to it. I wasn’t ready for it at all.
When we go out, even on Jack’s best days he will have some little moments. We will have people stare at us. It’s happened every time up until now, and it will happen every time in the future. If Jack has a full on meltdown, then we will have people gawking at us, and no doubt some will be judging.
To give you an idea of a meltdown in public. Imagine being stood outside the giraffe pen at the zoo, trying to calm down a 6ft tall 13 stone child. Who is just growling, whilst kicking, punching, head butting and scratching you. Whilst people stop to have a look, and then if Jack’s catches someone looking at him, he will go for them. So I have the added stress of stopping him hurting other people.
Learning and improving
After many years of learning we are more prepared for things like days out, which can mean preparing weeks in advance for a trip out. A spur of the moment day trip is not on the agenda. Jack needs to be prepared for it well in advance, whilst Lily tends to be okay, she too is more comfortable with this approach.
We get social stories and PECS ready so Jack is fully aware of what to expect. Then whilst we are out, we have to really watch Jack’s anxiety and sensory input. Where necessary we will apply deep pressure to keep him modulated. This might involve holding his hand, whilst we walk around and squeezing his hand repetitively. Or stopping to squeeze his arms and legs, jumping up and down together. Holding each other’s hands and pushing into each other, or waving your arms around like some sort of demented jellyfish. Sounds fun right?
Like I Said you need a thick skin, and it’s no good being shy, or worrying about what other people think. Days out are always stressful, but we do enjoy ourselves. I certainly have no intention of hiding away, especially when the kids want to go out and explore as much as they can.
My own social life
Now I am going to talk about my own social life. To be honest I’ve barely had one, and that’s not completely down to the kids. I’ve had my own struggles with depression, and spent 10 years working full time. Then as soon as I’d come home Natalie would go to work, and I’d have the kids to look after. We basically had no money, so even if I felt like meeting up with friends, which wasn’t very often. I’d just wouldn’t be able too.
Due to circumstances, we’ve only ever really had my parents to call on as babysitters. Which we have done from time to time, and myself and Natalie have had opportunities to go out. I’ve never liked to ask too often though, as there have been stages where Jack has been a real handful. I’m in a better place now, and so is Jack so having a social life is a possibility, which again is more than some people have. Some have to do this all on their own.
Things to be proud of
Being an autism dad might mean you have to move the goalposts of what you hoped for your child, and that’s okay. Maybe you dreamed one day your son would play football for England, but it turns out them just being able to play with a group of other kids. Is something that can bring you just as much pride.
I have so many examples of these sort of things, that are simple everyday happenings for the average person. But mean the absolutely world to us. Things like Jack being able to walk into his school hall. Lily being able to walk into her classroom, with all her classmates. There are loads, but they can be for another post at another time.
Thank you for taking the time to read, and I just hope that it gives people a bit more awareness. Of what it’s like being an autism dad or mum, or autistic person.
Dad Does Autism