This post idea came from twitter, and some of the great people I’m following on there. Things not to say to a parent of an autistic child. Some of the ridiculous and often downright offensive things, that we as parents of autistic children have said to us. Amaze me at times. Usually its by people who aren’t meaning to be nasty and offensive. There are those horrible people out there, but I’m not wasting my time trying to preach to them.
What I want to do is tell you all, things not to say to a parent of an autistic child. Specifically some of the more common things people say, and probably don’t realise just how offensive they are being. I’m quite a relaxed guy, and don’t personally get too upset by these things, but some people do, which is why I want to do this post.
Things not to say
Let’s start with the simplest and probably most common one. Sorry. When a parent tells you their child is autistic, for Christ sake don’t let the first word you reply be, sorry. I’m not sorry, they’re probably not sorry, and no one has died. Don’t be sorry. Depending on the parent, you could be met by a sarcastic or angry response. You’d be getting the sarcasm from me!
What likeRain man? If you don’t know Rain Man, it’s an 80’s movie about a someone kidnapping their autistic brother, to try and force him to give up his share of their inheritance. My main issue with it is, I’ve never watched the film so I have no idea if Jack or Lily are anything like Rain Man. I’ve heard plenty about it though, with some blaming it for the creation of lots of the negative stereotypes surrounding autism. Some also say it made autism visible, which was a good thing. I should probably watch it and make up my own mind at some point.
My personal favourite, Does that mean they are really good at maths? Something I got asked a lot when Jack was younger, the look of disappointment when I told people Jack doesn’t understand maths at all was quite amusing. Lily does like Maths, and finds it easier to understand than other school work. She’s not quite at genius level, not yet anyway. And let’s not forget, they don’t look autistic. Autism doesn’t come with “a look”, so I’m not quite sure what that is even supposed to mean. Or what this autism look that some people expect even looks like.
Just like any other child
I know it can feel a bit awkward knowing what to say, and unless you have been around autism you are unlikely to know a great deal about it. And what you do know are likely to be unhelpful stereotypes. So my advice for if the situation arises when someone tells you, there child is autistic. Treat the conversation like they are just another child, which of course they are. Then see where the parent takes the conversation.
I’ve shared 3 things not say to the parent of an autistic child, but I’ve been fairly lucky with my experiences. I’m sure there are lot more, and probably worse things that have been said. So to all the parents out there, if you have any other examples you would like to share. Leave a comment on here or on the social media’s, and I will add them into the post. As always, thank you for reading and your continued support!
Suggestions from readers
How do you cure them?
Did they have their vaccines?
Does that mean he’s a mong? (Christ, I’d be getting arrested, if someone said that to me.)
I have decided to do a series of, What is…posts, looking at the different medical diagnosis’s we have in our family. And there’s a few! What is autism? Is the obvious place to start. I’ve touched on the subject, and talked about what is and isn’t in various posts, but this will the first post looking directly at what autism is. I’m will then be following up with, What is Chromosome Micro Deletion? What is Fibromyalgia? Then possibly some others like Anxiety Disorder, ADHD, Sensory Processing Disorder, Pathological Demand Avoidance, Social Anxiety, PTSD, Depression….like I said, I’m not short of subject matter.
I’m far an “expert” on all these things, they are things I’ve lived through myself or watched those around me live through them. Part of my way of coping, especially with the conditions those around my that I love have to live with is. Researching as much as I can, to help them as best as I can. Now I want to share what I’ve learnt with as many people as I can. That after all, is the whole point of this blog.
Outside perception
Everyone seems to have heard of autism these days, but how many people actually know what autism is? When I see various people talking about what autism is, whether that’s directly to me, or seeing posts online. I have to be honest, it makes me wince. More often than not, they are completely wrong. There is a lot more awareness that autism is a thing, but the awareness of what autism actually is. And what it means to be autistic, still leaves a lot to be desired.
Of course the vary nature of the condition probably doesn’t help, it’s a vast spectrum. Every autistic person is different, and some have other things like learning difficulties, anxiety disorders etc.., and some don’t. If you don’t know anyone who is autistic, how much are you likely to know? When Jack got his diagnosis, I knew nothing. I vaguely could remember hearing about it, somewhere in my life, that was it.
“Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.”
Is that what you all had in your mind, when you started reading this? If you thought something please leave a comment saying what. I’d like to hear what people thought and why.
I’d also like to add what the NHS has on their website about, which makes a very important point.
Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people.
It’s something you’re born with or first appears when you’re very young.
If you’re autistic, you’re autistic your whole life.
Autism is not a medical condition with treatments or a “cure”. But some people need support to help them with certain things
Other than the “it appear when very young” bit, you are born autistic. That’s a very important thing for people to remember. Sadly, people get drawn into looking for “cures” or blaming it on vaccines. I have two autistic children, I have completely accepted who they are. The difficulties they face, but also embraced what they are good at.
Acceptance
Acceptance is the latest buzzword, that is replacing awareness. Most people are aware of autism now, what needs to be worked on. Is people accepting what it is, and what it means. I hope this explained that well enough for people to understand. It can be a difficult thing to grasp when you around it all the time, so asking people from the outside to fully grasp it. I think is asking a lot, but if we can get people to at least know the basic facts. Then we will have made progress. As always, thank you for reading, and your continued support.
Something I’ve come to learn is, finding good support providers for autistic children. Is a bit like looking for the golden egg/fleece, or Poseidon’s Trident. Or whatever other mythical object you might want to find. We have been fairly lucky that Jack goes to a really good place for overnight respite, every other week. Finding a good service provider for weekly daytime respite, has proven a lot more difficult. We have gone through a few in our time, for a variety of different reasons.
The first provider we had ceased to exist due to lack of funding, so we moved to another one. Not long after the same thing happened again. The next one we had for a couple of years before cancelling only recently. They were okay, with 2 workers taking Jack out for 3 hours a week, which he really enjoyed. The trouble was, the turnover in staff was ridiculously high, which caused problems. As Jack would get upset when people would leave.
The staff also weren’t given any real training, and far too many times we were let down by people not turning up. Or cancelling at the last minute, which caused major problems. Telling an autistic child that their plan for the day has been changed at the last second, or 30 minutes after he was supposed to have gone out, which happened a few times. With no real explanation as to why to give him, is a recipe for disaster.
Searching for a new provider
With this in mind we have been searching for a new provider, for a while nothing was coming up. Then we were recommended a place, that sounded so perfect for Jack. A provider that could give Jack the 2 to 1 support he needs. They have their own centre, where Jack can go and do all sorts of activities. He can also mix with other autistic kids of his own age if he wants to, and he really wants to. He finds new people difficult and it will take time. They can also take him out into the community, and the big one is the service continues into adulthood. This is unheard of, I’ve never certainly never heard anything like this before. So we desperate to try and get Jack on their books.
We had the issue over needing funding increased to allow Jack to have 6 hours a week, to make it worthwhile. We got the funding in place, for him to go over the summer holidays. He went for the first time this Thursday.
Jack’s first visit
Jack is always anxious about going to a new place, even somewhere he is looking forward to going to. So we put all the ground work in, to make him as comfortable as possible. The people who were going to be looking after him, came to meet him. They showed him photos of where he would be going, and talked to him about what he likes, and what he wanted to do.
On the day, Jack’s support workers came to pick him up, and he was so excited he shot straight out of the door. I had to call him back, as he forgot his bag. It was a good sign that he was so happy to be going! He was really happy when he came home, and even brought home some homemade pizza for us to eat. And he had all our favourite toppings, Pepperoni for Mum and Lily, and vegetation for me. Which shows he was putting thought into what we liked as he did them, which is nice.
He talked all about what he had been doing, and how he met lots of new people. He said he can’t wait to go back next week, and even asked why he can’t go everyday. In the evening we did have a meltdown, which would have come from all the sensory input, throughout the day. He was fine again afterwards, it’s just one of those things. Jack will always have meltdowns. Hopefully when he fully settles into the routine of going there, he will be able to stay calmer.
Overall though, finding good support providers for autistic children, is no easy task. We are really pleased with the one we have found, especially as it’s not something that will suddenly stop when he turns 18. Which is what happens with his current overnight respite. We are a few years away from that yet, but it soon comes round.
If you want any advice about service providers, please feel free to ask. As always, thank you for reading.
Today I just want to share something with you that Lily did as a surprise for me. She made me a card. Lily loves making homemade cards, and there doesn’t need to be an occasion. She will just make one for people, she does it all the time for us at home. Her friends at school and other family members. She just loves being creative, and sharing it with people.
Regular readers will know that Lily loves to get creative with arts and crafts. You will also know that I like to bang on about it continuously, like any proud father should. As a young autistic girl, she is finding so much of life really difficult at the moment. When she sits down with some paper, card or whatever else, and is just allowed to be creative. It is such a beautiful thing to see, and makes me so happy.
Lily’s card
Lily’s card
So there’s Lily’s card, and I can’t even express how much that I love it. A little picture of Lily she printed out, on top of a ladder made out of ice lolly sticks and matchsticks. I love how she found a photo of her reaching up, and it’s then positioned towards a moon. Then in the speech bubble it says, “love you to the moon and back”. It is just so cute, and it melts my heart. Then you have Lily’s creativity coming out with the night sky. So many colours going on, and then some stars stuck on. I think it’s incredible, but I’m obviously biased, so what do you think?
Homemade cards are always great for birthday’s Christmas, and whatever else you celebrate. But you are probably expecting a card of some sort already. To get one for no particular reason, other than the person giving it to you wanted to make something for you. Is really cool, and something I’d recommended doing, either yourself or something to get your kids to do.
If you’d like to see some more of Lily’s creations, click here to go to Lily’s Art Gallery. Her little gallery is slowly growing, and there’s quite a few cool things in there now. As always thank you to reading.
We had a busy weekend, the birthdays come thick and fast this time of year in our family. So I thought this was a good time to talk about autism and coping with special occasions. I’ll talk about the weekend we’ve had, and then talk about strategies at the end. They are very much the double edged sword in our house. Both Jack and Lily enjoy celebrating birthdays, Christmas etc.. but the change in routine, the excitement, family gatherings can often become too much for both of them.
But, they both expectations of what happens on birthdays and Christmas, so when we tried to not to as much to help with their sensory input and routine. That upset them. So it’s a very fine line we tread, between keeping them happy and celebrating special occasions, but not over stimulating them.
This weekend
This weekend was a busy one, there was a barbecue at my brothers house. For my brother and dads birthday’s, with a few family members there. Jack was happy as he had 2 dogs to play with, and Lily had her cousin to play with. It probably helped that due to what’s happening in the world right now, there was only a small number there. But Jack coped really well, his anxiety which would normally be through the roof, was manageable.
The dogs certainly helped, especially as they chased each other and were continuously play fighting, which Jack found hilarious. He was chatty, fairly calm and even watched us playing cricket. He didn’t want to play, but would happily fetch the ball. So he sort of was.
As for Lily, she loves playing with her cousin and she spent the entire time by his side. Playing football, cricket, with the dogs and generally getting up to mischief. Which was lovely to see. He is a couple of years younger than Lily, which puts them at a very similar level developmentally.
Lily is both girly and tomboyish, she’s happy playing either the typically boy or girl games. She seems to get on better with boys than girls though, as most of the close friends she has created have been boys. At school and even at nursery before that.
Mum’s Birthday
Saturday was nice, and then it rolled into Sunday which was Mum’s birthday. When it comes to autism and coping with special occasions, 2 days in a row is a very big ask. We also had the issue of the birthday routine. When it’s one of our birthdays, we always go out for a meal. Eating out isn’t always easy with Jack, as he finds overwhelming, the sensory input and his anxiety can trigger meltdowns.
We have learned ways of trying to manage it for him, and last year he was coping really well and really enjoying going out for meals. Of course this year we haven’t been anywhere, and it’s certainly a worry that we might be back to square one. When we eventually do go out for a meal again.
Mum’s birthday was more of a struggle
After Saturday, and Jack had stayed at his overnight respite on Friday, Jack was pretty tired on Sunday. Just like the rest of us, tiredness makes Jack less tolerant. We had prepared him, and Lily that we would t be going out, and that we would order in pizza instead. Which they both seemed happy with. We also planned to go for a walk around, a local nature reserve.
We were later than planned going to the nature reserve. Natalie has fibromyalgia, and Saturday has also taken its toll on her. She needed time to rest and for medication to work before we could go. With all of this by the time we got there, Jack was very anxious and on edge. The nature reserve has several ponds, the first one where the car park is tends to be very busy. Especially on a Sunday.
Once you get past that it thins out and you don’t see too many people. Jack was very argumentative as we walked around the first pond, a sure sign he’s struggling with his anxiety. Once we got past that bit, he calmed down other than getting annoyed with flies.
The fairy garden
Lily was really excited to see the reserves fairy garden. Which is a “designated area”, that’s been turned into a fairy garden, where you can add your own creations to it. It’s pretty cool, and not something you’d expect to see in a place like this. It’s not an official thing, just something someone started around a tree.
I know there have been some issues with vandals in the past, but it’s always been in good shape when we’ve been there. It also means it looks different every time we go. Which is pretty amazing. Now as well as adding something to this garden, we have plans to make our own at home. Which Lily is very excited about.
It turns out the nature reserve is bigger than I realised, despite having been there a number of times. As we found some different paths and several ponds I’d never seen before, where it was even quieter. This was great for Jack, who was much happier. We did end up getting a bit lost, and Jack found the way back for us. Using the map on the PokemonGo app, to find the way back to the pokestop at the car park. Something Jack was extremely proud of!
Pizza to finish the day
We finished the day off by visiting Natalie’s parents, and ordering some pizza in. After a busy weekend, the kids were ready to scoff down some pizza. All 3 of Natalie, Jack and Lily find it difficult to go to Natalie’s parents house. Natalie’s sister who had severe disabilities passed away last year. She lived at home with 24 hour care from carers, meaning the house was always busy (often chaotic) and noisy. Jack never liked going because of those reasons, and often wouldn’t go for visits and stay at home with me.
Now it is a big house that feels empty, and Jack finds that just as difficult. Just as we all do, the quietness serves as a constant reminder of a loved one who is no longer there. His gran also had an accident, knocking a cupboard with her wheelchair, which saw a teapot fall and hit her on her shoulder. Jack was very quiet during the visit, and at times argumentative. When we got home and Jack went to bed, he burst into tears.
This was actually a great thing. You may have heard the MYTH, that autistic people don’t feel empathy or love. The truth is of course they do, but like Jack they can find showing different emotions difficult. Or they show in a different way than what is considered “normal”. Jack letting his emotions out like that is a positive thing.
The strategies for autism and coping with special occasions
When it comes to autism and coping with special occasions, you have to think ahead. You have to strategies, you have to plan everything out and you have to try and establish routines. All of our birthdays in the house follow the same routine, depending on whether it’s a school day or not. Breakfast, presents (or school), chill out time, meal at a family place. Birthdays are not the time to try somewhere new. There is already enough going on in the autistic child’s mind, that it would likely be a recipe for disaster.
Start reminding the child weeks in advance that the occasion is coming up, if it’s someone else’s birthday. Make sure they see all the presents they will be giving before hand. Plan early and tell them what you will be doing on the day. The more prepared they are the better. Now every autistic person is different, some may be able to tolerate any change, some might not be able to cope with any at all. You are best placed to judge that.
We have had lots of very eventful and stressful birthdays with Jack. It would have been easier to just do very little for birthdays, but Jack wanted to celebrate them, he wants to go out and do things. So we put in the hard work to figure out how to make it work, and it was doing. Like i said before though, I just hope the current pandemic doesn’t put us back to square one.
The last and most important point I’d like to make is, don’t put pressure on them, and yourself to make everything “perfect”. It probably isn’t going to be. There will likely be anxiety spikes or meltdowns. You might have to walkaway from something that was planned, because they just can’t cope with it. That is okay, make adjustments and just find a way for everyone to enjoy themselves and be happy. At the end of the day that’s what is important. So, that’s my post about autism and coping with special occasions, I hope there’s some useful bits in there for people. Also that it gives a little insight into what birthdays are like for families like ours. This was a good weekend and Jack and Lily cooed really well on the whole.
Then of course there’s Christmas, but that needs a post all of its own, as that can be really….interesting. As always thank you for reading.
One of the things I find most difficult to try and explain to people, is what it is like trying to hold a conversation with my son Jack. That’s where the inspiration for, interview with an autistic child came from. Nothing I could ever write, could capture Jack’s personality and his “autism” as this has. Me talking will be in bold, and inside Jack’s answers there will be comments from me, these will appear in brackets and italic, to be easily distinguished. I apologise if it gets a bit confusing, but that is kind of the point of this hah.
I explained to Jack what we were doing, and what it was for before we stared. He was very happy to do it, indicated by the huge grin on his face. Jack loves showing off, and as with most kids these days it seems. He wants to be famous online, YouTube, TikTok etc. So jumps at any chance to be part of this blog. So let’s get on with the interview.
Jack training to be a ninja
What is your name?
You know.
Yeah, but what is it?
Jack. That’s a dumb question you know.
How old are you?
You know.
I know, but the people reading don’t. So you need to tell them (-pause-)how old are you?
I told you, you dummy.
No you didn’t.
What? You know, come on.
Yes, but you need to answer the question for the readers.
(At this point Jack is giving me a funny look, so I whisper to him 12 and he nods his head and we move on.)
Who do you live with?
You know, dumbass. (You might have noticed there’s a trend to Jacks answers.)
I know. But you need to answer for the people reading, remember? Because they don’t know.
Guess who’s over you’re head?
(At this point Jack has put one of his favourite teddy’s on my head, and wants me to guess which one it is. If you aren’t aware of the snuggly’s you can read about them by clicking here. A little panda has been added to the gang, so we went through this 4 times before I repeated the question.)
You know dummy. You say them I will nod.
Mummy (Jack nods), Daddy (Jacknods), Lily (Jacknods), anyone else? Biscuit. (Result! An independent answer!! Biscuit is our pet guinea pig.) And you know who else? Who? The Snuggly’s (You can never forget the Snuggly’s.)
Do you like going to school?
Yes. (That’s all Jack had to say about that.)
Do you have friends at school?
(Jack nods his head.)
What are their names?
(We have to wait for a minute, as Jack wants me to watch something that happens in PokeMon, that is on the TV.) Jimmy, Alfie, Bonnie, Jack, Dawid, Jacob.
What are your favourite things?
(Jack points at the TV for Pokemon.) Minecraft, SCP’s don’t forget about that.
Anything else?
That’s all I can think of.
What about dogs?
Yes. (Jack nods his head and makes dog noises).
What do you want to do when you grow up?
I don’t know. I’m already a Pokemon trainer, I want to become a Pokemon master.
Thoughts on the interview
That is the interview with an autistic child brought to you by myself and Jack. Some of the key things, that I believe it shows far better than I could ever try and explain are. Just a simple question, isn’t so simple. If Jack knows you already know the answer, he just doesn’t see why he needs to tell you.
Staying focused is a difficulty, the TV was a distraction, but it would have been worse without it. The TV in the background actually helps Jack to focus. Without it, he would have been up and out of his seat within a minute.
Jack’s understanding is limited, and he needs a lot of prompting to help him give answers. He wants you to answer for him, why exactly i’m not sure. Perhaps it’s to do with anxiety. But as he proved a couple of times, he can give answers independently sometimes.
One of the big things comes in the last question, and is something I will do in more detail in a future post. Jack can’t differentiate between reality and fiction, to him Pokemon are real. He is a Pokémon trainer, and he wants to travel the world catching Pokémon.
I hope this gave a little insight into how Jack works, and also how we work with him. 7 fairly simple questions that took a lot more effort to get through than what would be perceived as “normal”. I think that sums up well, what life is like for autistic people and those that care for them. Thank you for reading.
I’ve been busy with my editing the website, doing what I call “proper” blog posts about specific subjects. Plus trying to master Pinterest, so I thought it was about time I did a “family check up”. This blog started with me just talking about how we are all doing, and what we’ve been up to. I’ve learnt a lot about blogging, and writing blog posts since then.
However, I still do just want to do the posts where I’m talking about what’s been going on in our life’s. So let’s have this “family check up”.
School
We will start with the major one. Jack is back at school full time. It feels really weird, and I don’t know if I am comfortable with it yet. He was really struggling and was desperate to go back, and we are fortunate that he goes to an autism specialist school. He is in a class of only 7 when it’s full, at the moment there are 3 of them attending. Due to this we decided to send him back, and he is much happier. It had to be full time or not at all, otherwise the confusion in routine would be too much for him.
This of course meant Lily wanted to go back to school, though not full time. At the moment she is going on just on a Monday, with the key workers group to do a outside classroom. She really enjoyed going on Monday. and was asleep by 5pm! It felt weird having a quiet house on Monday, in my head I was foo to get lots of stuff done. I ended up just enjoying the quiet time, and did nothing.
Times have been hard
It’s been a difficult few weeks, especially for Lily who is the one really struggling at the moment. We’ve got quite good at reading Jack, and knowing what’s wrong, and how to solve it. Lily is a complete mystery still, and one thing the lockdown has made really clear. Is just how much being autistic affects Lily.
There’s a lot of work coming up to get the understanding of how Lily works, so we can help her the best way we can. Natalie is back working too, so there’s going to be quite a bit of time where it’s just myself and Lily coming up. I’m hoping to be able to spend some time talking to Lily, and hopefully work put some ways to help her. Too give you an idea, whilst talking to her this week. She said things like “you know I don’t understand things” and “I sometimes wish I wasn’t hear”. Which is a frightening thing to hear from an 8 year old.
How am I doing?
Obviously I am stressing about Lily, but getting her to talk is actually a good thing. We now just need to work things out. Other than that I think I’m going a bit stir crazy, I really need to get out more. Even if it’s just for those walks I set in my July goals post, hopefully next Monday I will make more of the day without the kids.
I am pleased with how this blog is going though, which is keeping my spirits up, as well keeping me busy. Though i’m currently having trouble leaving comments on other people’s blog posts. I think Akismet has me marked down as spam, so I’ve emailed them to try and sort it out. It might seem a minor thing, but it has really stressed me out.
I think that will do for this family check up, hopefully in the next one I will be a bit more cheerful. Hope you’re are all doing well, and staying safe, take care.
I’ve compiled a list of “5 things you need to know about autism”. The idea being to give you some idea of what autism, and being autistic means. Whilst also dispelling some myths about autism. On with the list.
An autistic child turns into an autistic adult
If you think this sounds obvious I don’t blame you, but I can’t remember the amount of times I’ve heard. Won’t they grow out of it? The answer is no you don’t grow out of it, unfortunately that’s still not fully understood by some people.
Including the it seems our government etc.. as as soon as an autistic person hits 18, they seem to go completely off the radar. Services, care and benefits are suddenly stopped, and a transfer to adult services appears to be as easy as cracking an atom. When will this change? Hopefully sooner rather than later, but I won’t be holding my breath.
Autism isn’t a learning disability
An autistic person may or may not have a learning disability (and other diagnosis) alongside autism. What autism is, is a very complicated and disputed matter. The simple version of how I try and explain it is, it is a condition that affects communication and social interaction. Is that accurate, and the best way to put it? I don’t know.
Anyone can be autistic
For a long time autism was seen as a condition for white boys, one of the main reasons for this was the diagnosis procedure. It was tailored towards symptoms shown by white boys, leaving girls and people of different ethnic backgrounds completely overlooked. It’s now becoming understood that girls display symptoms differently, and progress is being made. 10 years ago our daughter probably wouldn’t have been diagnosed.
Not every autistic person is amazing at maths
More than once have I been asked, does that meat they are amazing at maths? When I’ve told people about Jack and Lily being autistic. No it doesn’t! Jack doesn’t do maths at all, and whilst maths is Lily’s favourite subject, she is still working behind her “expected level for her age” at the moment.
This applies for any other “special ability”, there are autistic people out there who have some unbelievable talents. Which should be celebrated, but I’ve also seen autistic people feeling bad about themselves for not appearing to have a special talent. That shouldn’t be the case, everyone is different and unique in their own way. Autistic or not.
You don’t need to feel sorry for parents of autistic children.
Thankfully no one has ever said, “oh I am sorry” to me, when I’ve told them my children are autistic. But it does happen a lot, as well as “awww” and the look of pity. My children aren’t ill! They find some things more difficult than others, but they are perfectly healthy.
There have been some difficult times, especially with Jack. I think they are coming with Lily, now she’s older her issues are becoming bigger. But I’m not sorry for who they are, so no one else should be.
They are my 5 things you need to know about autism, obviously there is a lot more to it. This I think is a good start for people who don’t know much about autism, to gain a bit of understanding.
Lastly I’d just like to mention that I’ve updated the website and integrated WordPress into the website. So I now have a nice new shiny like button at the end of posts, and a follow button to follow this blog on WordPress. Any support as always would be hugely appreciated, thanks.
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.
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 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.
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.
A subject I see talked about a lot on social media, is autism and food. It seems a lot of autistic people, especially children, have a very limited diet. There are different reasons why this might be the case, and it can go to extremes. A few years ago whilst being shown around a school, myself and Natalie bumped into parents of another autistic child. We had a quick conversation where they told us, their 7 year old son would only eat baby food.
Thankfully we’ve never had a problem with Jack, who I often refer to as the human dustbin. He doesn’t like spicy food, but other than that he eats pretty much anything. Lily on the other hand, is a different story. Before she had her own autism diagnosis, her “fussy” eating was a major concern for us. Now we know she is autistic as well, and that this seems to be fairly common. We have been slowly trying to expand her diet. So I’m going to look at what she eats, and how we are trying to expand her diet.
What Lily Eats
Like most kids she’s more than happy eating sweets, chocolate, cake and crisps. There are limits though, nothing sour, no jelly babies, only homemade icing, and only ready salted and quavers and wotsits.
The one good thing is Lily likes her fruit and veg, she will eat most fruits, other than oranges and other citrus fruit. She loves peas, carrots, broccoli, sweet corn and potato. After that though things get more limited, here’s a quick list of what she will eat.
Plain sausages
cocktail sausages
tinned beans & sausages
chicken nuggets (refusing recently)
boiled rice
plain pasta
white bread
Cream crackers
pepperoni pizza
burger (only recently)
She will also eat a few different cereals, until recently the milk had to be in a separate cup. Everything has to be plain, she won’t have sauce on anything, other can ketchup and gravy as long as they are in a separate bowl and not on the plate. Compared to what I’ve heard from others that’s not a bad list. It has taken some time and effort to slowly introduce new foods, or sometimes like recently. Lily randomly asked for a burger when Jack and I were having some.
Lily’s plain pasta meal
How to approach getting them to try new food
The way you approach getting your child to try new foods is very important, and that goes for any child not just an autistic one like Lily. I think we should be well past the days of, eat that or you’ll go hungry, that’ll teach them method. As my dad used to tell me, he was told by his dad. He half threatened that with me and my brother, but never followed it through.
When it comes to autism and food, you have to take the right approach. Just like with everything else with autism. The way we approach it with Lily, is the slow and steady approach. We always offer her everything that the rest of us have, and give her the choice to say yes or no. We get food in for her to try and offer it her. Only once, if she says no, leave it and try again another time. This has worked well with the fruit and vegetables. Keep showing her the foods and wait for her to become interested in them herself.
You never know what they are going to ask to try, I never expected her to ever want a burger. Just keep trying and it will take as long as it takes, Autism and food is not a subject that can be rushed. Getting Lily to learn to cook foods has also been helpful, she really enjoys it and it encourages her to touch different foods. Often it’s not the taste that’s the problem, if they won’t try it, how can it be? It’s the look, the feel and the texture of the food. Until recently I had to pick every last bit of cheese off of her pizza, before Lily would eat it. Now she eats the whole thing, perhaps making her own pizza helped with that? Click to see Lily’s pizza post!
Setbacks
Unfortunately like a lot of things with autistic children, there can be setbacks. Lily has visibly been finding things more difficult, the longer the current “lockdown” situation has gone on. As much as I’ve tried to keep her entertained, she struggles without her routine just like Jack does, and is missing her friends from school.
She has been saying she doesn’t know what she wants to eat a lot, and saying no to a lot of the things she’d normally eat. Thankfully pizza and roast potatoes and vegetables still always get a yes. I hope this is because of the anxiety and uncertainty of the current situation, and she will eventually go back to eating how she was.
We will have to see how that goes, taking the same approach as with new food. Offering it with no pressure, and letting her take her time. Are there any parents of autistic children in the same boat as us? Has the lockdown brought problems like this to the surface? And how have you been dealing with them? I’d love to hear from you in the comments. That’s all from me on autism and food, thanks for reading.
