What’s it like being an autism Dad?

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.

What’s it like being an autism dad?
photo of me worn out by the kids

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.

Jack & Lily
Jack & Lily our for a walk

Going out

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.

Family
At a fireworks display

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

My name is Adam. I live with my partner Natalie, and our 2 children Jack and Lily. Both children are autistic, it is now my mission to show what life around autism is like. Spread the awareness and gain the acceptance that autistic people deserve.

52 thoughts on “What’s it like being an autism Dad?

  • June 17, 2020 at 5:41 pm
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    And this is why I have nothing but respect for you 👍

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  • June 17, 2020 at 7:22 pm
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    It’s so good that you find the ways to still go out and have a good time.

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  • June 17, 2020 at 9:13 pm
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    I don’t think I’d ever dream of my child playing for England, as I’d like then to win something if they were good enough to play at the national level ha ha ha.

    Families always involve sacrifices, but you clearly have to sacrifice a lot more, which you’re obviously willing to do. You’re doing a great job!

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    • June 17, 2020 at 9:37 pm
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      I should have used a better example 😂 It certainly does, thank you.

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  • June 17, 2020 at 11:35 pm
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    You’re doing an amazing job! It must be hard when people start staring in public, and tough when the whole family can’t attend an event. It’s a steep learning curve but you seem to do really well when it comes to coping with it and all the sacrifices that have to be made.

    Sophie

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    • June 18, 2020 at 7:54 am
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      Thank you, it’s difficult, but you just have to make the best of things.

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  • June 18, 2020 at 8:18 am
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    I loved reading this post. I have complete respect for you for speaking out about how you feel & how you find everything.

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    • June 19, 2020 at 4:06 pm
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      From one Autism dad to another, keep it up my man, you’re doing great 😁. Your kiddos need you to be there, squishing hands, running defense, getting your family out there and staying positive as best you can. Never forget to let them surprise you. Thanks for writing.

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      • June 19, 2020 at 4:36 pm
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        Thank you, I really appreciate your comment from someone that “knows” it means a lot 👍😊

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  • June 18, 2020 at 8:20 am
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    Thank you for sharing your story, sounds like you’re doing an amazing job!

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    • June 18, 2020 at 2:26 pm
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      Thank you, I just do my best 😊

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  • June 18, 2020 at 12:50 pm
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    Your doing such a fantastic job mate, you’re always positive and you produce true spirit. Inspirational person and family you are 😊

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    • June 18, 2020 at 2:22 pm
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      Thanks mate, really appreciate your words 😊

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  • June 18, 2020 at 2:01 pm
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    Thank you for sharing about what it’s like to be a parent of children with autism.

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  • June 18, 2020 at 2:14 pm
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    I think it’s definitely just as important to share how you feel on this blog as well as what the kids are up to! I’m sure these sorts of posts will help a lot of Autism Dad’s out there! Thank you for sharing 🙂

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    • June 18, 2020 at 2:52 pm
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      Yeah, I’m trying to find the right mix of what type of posts do when, how many a week etc I’m getting a sort plan together slowly 😊

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  • June 18, 2020 at 2:37 pm
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    You must go through a rollercoaster of emotions – tough times and great times. You are so inspiring and you will be helping others by sharing your posts. I think it’s great you’ve written about yourself here too because people can tend to forget about the parents. Thank you for sharing this.

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    • June 18, 2020 at 2:53 pm
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      Thank you, my aim is definitely to show all sides to what our life is like, so hopefully I’m achieving that 😊

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  • June 18, 2020 at 3:55 pm
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    Really great write up, you both do an amazing job with your kids.

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    • June 18, 2020 at 9:36 pm
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      Thank you Clare, we do our best 😊

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  • June 18, 2020 at 9:33 pm
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    I know just what it’s like having people stare, you can’t let it get to you. You’re doing a great job 👍

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    • June 18, 2020 at 9:36 pm
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      Thank you, I do my best not to let it get to me.

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  • June 18, 2020 at 10:16 pm
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    Truly sounds like your children are blessed to have you being there for them consistently and being understanding and kind! You’re doing a really great job !

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    • June 18, 2020 at 10:48 pm
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      Thank you, it’s really nice of you to say that. I try my best 😊

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  • June 18, 2020 at 11:22 pm
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    You do so well with your kids and this blog is so informative! I’m sure you’re changing minds about families affected by autism and helping other families!

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    • June 19, 2020 at 11:51 am
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      Thank you, I really hope I am, that’s the ultimate goal 😊

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  • June 19, 2020 at 12:16 am
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    This was such a great post. I loved hearing your perspective on everything and reading all about it! Thanks for sharing!

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    • June 19, 2020 at 11:52 am
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      Thank you, I’m glad you liked it.

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  • June 19, 2020 at 8:16 am
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    I have so much respect for you, and your partner. I think you do an amazing job! There are lots of sacrifices you have to make, but you bring so much happiness to everyone. Keep up the amazing work!

    Em x

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    • June 19, 2020 at 11:47 am
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      Thank you 😊 it’s so nice of you to say. We try our best.

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  • June 19, 2020 at 12:17 pm
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    This is such a great post! I always have so much respect for you every time I read your posts. You’re doing brilliantly. It’s great to have an insight into what it’s like being an autism dad, your kids are really lucky to have a dad like you!

    Reply
  • June 19, 2020 at 2:25 pm
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    There’s no way to write this and not sound patronising (which I certainly DON’T mean) but I have nothing but the deepest respect for parents with autistic children. I think this is such a valuable post, Adam, really helpful for both parents with and without autistic children. You and Natalie are both doing such a great job.

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  • June 19, 2020 at 3:02 pm
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    Such a great post and a great insight into what it’s like having autistic children for people (like myself) who don’t have any children! Deepest respect for you both, you’re doing a cracking job!!!

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    • June 19, 2020 at 4:28 pm
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      Thank you, I’m glad it’s giving people an insight, I appreciate you taking the time to read.

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  • June 19, 2020 at 3:15 pm
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    Important insight for all dads/parents, especially those who share the same joys and challenges as you – daddy on!

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    • June 19, 2020 at 4:32 pm
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      Thank you for taking the time to read and comment, I’m pleased you found it insightful 😊

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  • June 19, 2020 at 3:20 pm
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    I love your perspective on being a parent to autistic children. There is so much special and beautiful about them!

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    • June 19, 2020 at 6:02 pm
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      Thank you, I really appreciate your comment and I’m glad you enjoyed the post.

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  • June 19, 2020 at 5:05 pm
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    You are doing a great job, you should be proud!

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  • June 19, 2020 at 9:06 pm
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    I think this has to be one of my favorite pieces of writing from you so far, simply because I connected with so much of what you have to say! I have always loved that you are there for your kids, even when it is tough, and that you keep it up no matter how strangers might stare at you.

    It is hard knowing people are silently judging, but I think writing is an awesome way to share your thoughts so more people yet can understand.

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    • June 19, 2020 at 9:45 pm
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      Thank you, I definitely opened up a bit in this one 😊

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  • June 19, 2020 at 9:49 pm
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    Great post, really insightful. I really enjoy your blog, keep up the good work!

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    • June 19, 2020 at 9:58 pm
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      Thank you, I really appreciate you saying that, it means a lot 😊

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  • June 20, 2020 at 12:20 pm
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    I have so much respect for you after reading this post. Your life doesn’t seem to be easy but you are setting a wonderful example for your children and that’s beautiful.

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  • June 20, 2020 at 9:33 pm
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    I have so much admiration for you! I have seen other parents struggle emotionally with having a child who has autism. But through your blog it seems you are sharing the good that has come to you as well.

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    • June 20, 2020 at 9:39 pm
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      Thank you, it can be hard, there have been plenty of moments where it all felt too much. But if you accept the child you have and learn to meet their needs the right ways, things can be good. That really is what I want to show.

      Reply

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