What’s it like being an autism Dad?

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

Spending time in the garden

Spending time in the garden

Spending time in the garden is always nice, right now it’s a lifesaver. Something I had planned to do this spring, was finish the garden. At one time it was an overgrown mess, but last year with the help of my parents, we got it looking pretty good for the most part.

This year I want to keep on top of it, and finish it off. The one major obstacle, other than me possibly breaking my big toe (click here if you haven’t read about that calamity yet) is we have bramble growing out from under our cherry blossom tree, which is proving impossible to get rid off. So I just need to try and stay on top of it.

Our garden

Things have started growing and flowering over the last couple of weeks, which has been a welcome sight, when the garden is pretty much all we get to look at most of the time. Some plants have still got a lot of growing to do yet, and a bit of weeding needs to doing. I’ve put one new plant in this year. I would like to fill a few more of the bare spots we’ve got.

I want to get Jack involved in helping me. He enjoys the allotment and growing stuff at school, but as is often the case, that is a school thing. So when you ask him to do it at home, he says no that’s for school. Which is why I chuckled when they sent school work home. Unsurprisingly he’s not accepting it if you say it’s school work. So I’m trying to get him doing learning stuff, without ever mentioning the S word.

Garden 2

Despite my injured I got back it there and did a little bit of gardening. I was careful not to over do it, my foot is feeling better, but my big toe is still a bit sore. Fingers crossed it will be back to normal soon, spending time in the garden is the most enjoyable thing at the moment. Whether it be the gardening, playing with the kids or just relaxing out there. It’s so important for my own mental health, as it is for everyone in the family. The most eventful things that has happened is the kids letting the Guinea Pigs our on the lawn, which led me to think one got stuck under a tree root. Thankfully the she was just hiding and got out by herself. Still it had me stressed for a bit.

Guinea pig under root


I even ventured out for a little walk today, as Jack asked to go for one. Considering the problems we had with just getting him outside last week, I didn’t want to say no. We didn’t go far, just 30 minutes around the village. It was nice though, we took it steady and it was nice and quiet. So overall it’s been a positive day. Have you been making the most of your garden? If you don’t have a garden, what do you instead? Make the most of your once a day exercise allowance?

Dad Does Autism

Dad Does Autism blog checking in

Dad Does Autism blog checking in

It’s been tough going so far this week. I’m trying not to let things get to me, but I’m finding it impossible not to worry. The Dad Does Autism blog is certainly helping me keep my sanity, but myself and Natalie both have underlying health conditions. Obviously there is concern for our own health, but the impact one of us being hospitalised on the kids would be huge.

Obviously it wouldn’t be easy on any children, but the difficulty in understanding and communicating, means Jack at 12 years old will find it as confusing as a much younger child. Unfortunately we’ve had some experience with this. A couple of years ago Natalie fell and hit her head, it quite quickly became apparent things weren’t right. So we called for an ambulance.

Seeing his mum taken away in ambulance convinced Jack she was going to die. I didn’t realise this at first, he became very quiet and withdrawn. I thought it was the shock of what happened, but Natalie came home later that day and we told him everything was OK. Over the next few days Jack didn’t get any better, and started lashing out. We managed to get him to communicate, that he still thought Mum was going to die. It took a few days using PECS and social stories, but eventually he was happy that mum was not going to die.

Talking about coronavirus

We have talked with the kids about the coronavirus a little bit, they knew the reason they were of school. So we told them there’s a chance we could get poorly, but most people get better. Lily doesn’t seem to phased by it, she doesn’t really understand what it means. Jack on the other hand, keeps getting worked up about it. He’s started saying it’s a zombie virus, and we will all be turned into Zombies.

I’m guessing someone’s said something in a YouTube video. The trouble with letting Jack do things on his own, if he sees a video like that, he will take it literally. The BBC news or people joking around on YouTube, Jack has no concept of the difference. So I’m currently trying to convince there’s not hoards of Zombies roaming the Derbyshire countryside.

Trying to cope

As I said, I’ve started to struggle mentally. So I’m now making a concerted effort to get back on track. Getting outside and doing the daily exercise had ground to a halt. So I’m back out there today, playing some sports with Lily. I’ve always liked to play sport, rather then just do what I call mundane exercise. I don’t mind a walk around somewhere nice, but jogging and going to the gym I’ve always hated.

Then there’s my autism blog, it’s certainly been more difficult to keep up the writing, with the kids always at home. I have managed to do a bit most days, but there needs to be a bit more general organisation. So we can all be a bit more productive. Getting the kids to go to bed, and to sleep is become more and more challenging. They just aren’t getting the stimulation during the day to wear them out. Especially Jack, who has been up into the early hours the last few days. We are trying, but being so limited with what you can do, it’s proving difficult.

Exciting things to come

There are a couple of things I am excited about. I have started writing my first short story, that I plan to share on here. It’s about halfway done. It will be the first time I’ve wrote a piece of fiction and shared it with people in over 12 years. It’s exciting and terrifying at the same time, but I’m so happy this autism blog has given me both the platform and the confidence to do it.

Natalie is also planning to write a piece for the website, which I am really pleased about. It will be about how the relationship between Jack and Lily was built, the strategies used etc.. Natalie really is the “expert” with this stuff, I spent a lot of time at work in the early years and Natalie did a phenomenal job with Jack and Lily. She doesn’t have much confidence with the writing side, so with my help with that side, she’s happy do it. As always teamwork is vital to our success. Hopefully that will be on its way soon.

Dad Does Autism

Anyone else starting to crack up?

Anyone else starting to crack up?

So it’s basically been 2 weeks of everyone being at home, and not being able to go out. So the question I want to ask is, anyone else starting to crack up? Or is it just me? I’ve got a lot of things I can be getting on with to pass the time, but for the last couple of days I’ve struggled for motivation.

What really hit home yesterday, was I saw it in Lily for the first time. She didn’t want to go outside, she didn’t want to do much of anything. She just sort of moped about, looking fed up. I was in a funny moody, Natalie and the kids would tell you I was being annoying. Basically I was making silly noises, and doing stupid things. It’s something I do quite a lot, I get a sort if release from it. Yesterday was over the top and I got on everyone’s nerves.

In the end we went for a little drive around locally. I’m not sure where you stand with just having a bit of a drive. We didn’t get out anywhere, we just had a bit of a drive. Is that ok? I’m not really sure, but I needed to see some different scenery for my sanity. Everyone else felt the same, and I personally felt much better when we got back. I think everyone did. Jack has started to get more and more agitated, by not being able to follow his normal routines. He’s become very argumentative, but we are just about keeping a lid on it. I just wish I had some answers for him, the uncertainty is the worst part for everybody. For Jack it is even more of a problem.

So is anyone else starting to crack up? Or are you doing ok so far? If you are starting to feel it, what are you doing to try and cope with it? Any ideas are welcome, please leave a comment below.

Dad Does Autism

Delayed processing as part of autism

Delayed processing as part of autism


So we are into the second week of the kids being at home. Since my last post things haven’t been going quite so well. Jack has delayed processing, understanding delayed processing as part of autism, and how it effects Jack, was something that took us a long time to get our heads around.

To put it in broad terms, an autistic person may experience a delayed response to sensory stimuli. What this means using Jack as an example. When I ask Jack a question, there is usually no response. It’s as if he hasn’t heard the question. I normally ask again, as Jack usually has a TV or some music on. Just in case he didn’t hear. But it is highly likely he did hear the first time.

Echolalia and learned responses

He just needs a lot more time to process what has been said, than you would typically expect from a child. Jack can give immediate responses, but these are what are called learned responses. Which is where his echolalia comes in. Jack can learn a conversation, and repeat it the next time the same situation comes up. But this is like someone on auto pilot. You are not getting his true thoughts and feelings. We have had many “disagreements” with “professionals” who have worked with Jack regarding this.

Getting Jack to express those true thoughts and feelings, hasn’t been an easy process. We are getting there slowly, and Jack is much better for it. Learning ourselves when to use social stories and PECS took time. They are so important and have been vital to Jack’s progress, and his ability to communicate.

Visual Aids - a picture exchange communication system folder
One of Jack’s PECS folders

As a parent it’s not easy to always remember this. Sometimes you can forget that a simple question like, what do you want for dinner? Is not so simple for an autistic child. Jack has to be given options to choose from, otherwise you just get a blank look and maybe a “don’t know”. Start with options of food he knows, even showing him the options, and he can give you an answer fairly quickly. Even in a situation of high anxiety or meltdown, though it’s likely he will respond with nods of the head rather than words.

Delayed response to situations

This delayed processing as part of autism, also comes into play, with situations that happen. Which is why it comes as no surprise to me, that Jack was fine with the sudden change last week. But this week he is finding it very difficult. His anxiety has gone through the roof, and he’s become tense and argumentative. It’s like it has taken him a week to process what is happening, and everything that has changed.

We are now prepared for this, and a week isn’t actually a long time. In the past Jack has had spikes of behaviours that stemmed from an incident that has happened months before. Which left us and everyone else baffled, until we finally worked it out with Jack. Knowing about the delayed processing, and just how long the delay can be has certainly been a great help. Now when Jack is unhappy, we know to trace back for months to find the solution if necessary.

What’s happening now?

Jack finding things difficult this week, in one sense can be a good thing. It’s only taken a week for him to start to process what’s going on. So we can now work on bringing his anxiety down, and getting him in a happy place. 

The one issue with that of course is these are unprecedented times. We don’t have the answers to the questions he wants answering. When can he go back to school? I don’t know. Will respite be back soon? I have no idea. When can we go and see his grandparents and their dog Mack? I don’t have clue. Just like I have no answers for him when he asks about going bowling, or to the cinema.

He is getting frustrated that I don’t have any answers for him, and he’s becoming very argumentative at times. To be honest I’m getting frustrated myself, the last two days have been hard work. There’s no break from it either, no chance to recharge. The outlook isn’t looking good for that break coming any time soon either.

Jack was fairly calm and relaxed Tuesday evening, so hopefully that’s a good sign. When his anxiety has been down he’s been really good. He’s been playing with Lily more than usual, and spending more time out of his room than usual. I guess being at home all the time, staying in your room all day gets a bit dull. One positive of this coronavirus stuff, is we are doing activities together more than we would usually, which is nice. 

Free sensory guide

Lastly I would like to point you in the direction of autismspectrumteacher.com where you can currently get a free 12 page guide to “Meeting Sensory Needs” by clicking here.

It is aimed at teachers in the school environment, but having read it there is certainly value in it for parents as well. As we know only to well with Jack, and are beginning to learn with Lily. Meeting a child’s sensory needs is so important. Get that right, and everything else will start to fall into place.

There’s some great information and ideas in the guide, which is the first chapter of an upcoming book. Though it’s based in the classroom, you shouldn’t assume your child’s school is always aware and doing these things. So arm yourself with information to take to them, that’s what we have always done and will continue to do for Jack and Lily.

Carers don’t have time to be ill

Carers don’t have time to be ill

I woke up today feeling absolutely terrible, and carers don’t have time to be ill. Pretty sure it’s just a cold, and I haven’t been struck down with the dreaded Coronavirus. But I feel terrible anyway. My temperature is really high and I just want to sleep. Not much time for that though.

Still have to get the kids ready for school. Lily still needs walking to school, and then back again. I will admit to spending most of the time the kids were at school, curled up feeling sorry for myself.

Jack came home in one of his agitated moods. This quite often happens with the long drive home he has. The way we deal with this is going for a walk around our village. Jack goes on PokemonGo, and by the time we get back he has usually settled down.

I really didn’t have the energy for it today, but not doing it would prove to be harder. As Jack wouldn’t settle without going. Of course today he didn’t want to come into the house when we got back. It took a lot of effort to finally get him inside. I made him a sandwich and he finally settled down. Now I’m off to curl up and feel sorry for myself. At least until I am next wanted for something. Which probably won’t be long. Carers don’t have time to be ill.

Dad Does Autism

Chilled Out Saturday

Chilled Out Saturday

After yesterday we had chilled out Saturday at home today. Lily wanted a pyjama day. She wanted to play a game of Battleship and play with hers cars. Then spent a lot of time doing art. Lily loves art and it’s great seeing her express herself. Jack mostly stayed in his room. Playing on his computer.

In the afternoon I took Jack for a walk. It was a good 45 minutes. Obviously involving Pokemon. It was another good walk. This time no phones were broken.

In the evening Lily slipped over in the kitchen and hurt herself. It caused her to cry loudly. One of the biggest challenges we have with Jack. Is that he can’t handle sudden loud and distressing noises. Children crying being the number one cause for meltdowns.

Natalie was out at work. So I had Lily downstairs crying. Needing comfort and help feeling better. Jack upstairs Growling and stomping. Needing help to regulate himself and calm down. It is an extremely frustrating position to be in. But can be fairly common and something you just have to learn to deal with. I wouldn’t necessarily say it gets a lot easier over the years. But you do learn from experience ways to handle the situation.

Thankfully after putting Lily on the settee with her favourite blanket and giving her a cuddle she was ok. So I went to Jack, who was visibly distressed. It will be the build up of the incidents of the past 2 days. With Lily’s crying being the spark that lit the fuse. He got aggressive. But I told him he had Chicken Burgers ready to eat. Which was a bit of luck. He wasn’t happy. But he wanted his Chicken Burgers. I left them with and gave him time to calm down. It took a while, but eventually he calmed right down.

A slight episode at the end of the day. But overall a fairly chilled out Saturday here at Dad Does Autism.