Going into this post, it’s important to know that I’m frustrated and trying to make a point about why Autism parents, like myself are so exhausted all the time. Every time I’m asked why I’m so exhausted, it’s a reminder how little people understand the challenges I face as an Autism parent.
I’m absolutely venting but trying my best to do so in a way that helps to put things into perspective.
I shouldn’t have to say this but I love my kids and Autism is part of who they are. I accept them and love them just the way they are. The reality however, is that Autism can make things very, very difficult. If you can relate to this, please show your support by clicking the Like, Share or Tweet button and help spread the word.
One of the main reasons I write this blog or at least started writing this blog a decade ago, was to raise awareness. I wanted to raise awaress for my kids with Autism, as well what my wife and I experienced while proudly raising them.
The are over 11,000 posts on this blog and if there was one single take away from my collective journaling, it would be that Autism parenting is fucking exhausting.
Autism parenting is a 25 hour a day, 8 days a week, 366 days a year, lifetime appointment. There is no end and often times, very few if any meaningful breaks. Even if we get a break, we can’t turn off the fear, worry, anxiety and stress we feel. These feelings are a constant in our life and for good reason.
Hey Rob. It’s nice to meet you sort off. I am a parent of two boys with Autism. Your meme has made it to me from the UK (I’m not in the UK but the US (AZ)). Although I understand what you are saying, some people don’t. I’m actually in a heated discussion over your meme with someone who has 6 autistic kids. As I was going back and forth, I realized that people who don’t actively deal with children or provide care for people on the spectrum AND people who bear their autism flags (I’m actually bantering with the latter) don’t understand that caregivers are people too and that we get tired. Now, I think the former doesn’t understand the triggers or how caregivers have to play an infinite game of Trigger Roulette just by going to the grocery store or mall or doctor’s office so unfortunately, they assume that all parenting is hard because they….just…don’t…get…it. This makes us so frustrated. On the other token, some autism crusaders are so caught up on neurodiversity and inclusiveness for individuals with autism that they make the same statement that clueless NT’s make, “It’s just like parenting,” when in fact it is not just like parenting. This is frustrating to me as well. The crusaders focus on fighting for autism so much that they fail to see there is a group of people, ignored and tired, with our own perspective, too. It’s not just about the individuals’ with autism perspective. Your meme made me feel like someone got me and that it is understandable why I am so exhausted every day because I am. So Thanks.
Miaya,
Nice to meet you as well. Perhaps there’s a bit of confusion surrounding this. I assume you’re referring to the image in this post as a meme. Actually, it’s just an image with the title of the post. It makes things easier to share and wasn’t intended to be taken out if context.
Having said that, I get it. Autism can have a profoundly dynamic impact on both the person and their family. Everyone has a different experience and anyone trying to speak with authority on anything other than their own, personal experience needs to be very careful.
In my opinion, Autism is something that should be viewed on a person by person basis. It’s so different from one person to the next and while there’s always some overlap, blanket statements or assumptions about the best approach to Autism as a whole, seem ill-advised.
I prefer to deal with the reality I’m existing in because, at the end of the day, that’s all that matters. I have three kids with Autism and they are each impacted in profoundly different ways. I treat them each as an individual.
I’d like to think that we can someday bring everyone together, and exist on the same page but that doesn’t seem likely. All we can do is live our lives the best we can, help our kids with Autism in the ways that help them to meet their unique potential and try to take care of ourselves along the way.
All parenting is hard but Autism parenting is very, very different. There is some basic or fundamental overlap but oftentimes, that’s where the similarities end the differences begin.
I’m glad you were able to feel a little less isolated by my words. I just wanted to make sure you understood that I didn’t intend that as a meme and it should be taken in the context of the entire post. That said, I think that the title is universal and sums up how many Autism parents feel.
Actually, I wish the other guy could see what you said. He basically assumed that you were speaking on an entire group of autistic people based off of the picture. It looks like a meme connecting to your blog. It doesn’t connect to a specific story. It may be easier just to show you. Click the link below to see what I am saying. You need to have a linkedin account to view it.
Moving forward, I do believe that it’s different, but their are some universal similarities such as but not limited to exhaustion that affects all caregivers of individuals with autism.
https://www.linkedin.com/feed/update/urn:li:activity:6449197839611363329/
Also, on it’s face on LinkedIn it looks like a meme until you click it, which I did but I don’t think the other parent did, which is why he made so many assumptions that you were making a blanket statement. I knew what you were doing. I called it a meme in my initial post because it looks like a meme, but I understand that it was link to your post and this webpage.
No worries. LinkedIn should be displaying a preview of the post and encouraging people to visit in order to understand better what’s going on. Sorry about the confusion.
I always click on the link because I know it’s a story behind the poster/title. So I wasn’t confused. Just it looks like a meme at first glance. So some dude got upset that you were making a blanket statement. I don’t know why people think that being exhausted means we don’t find joy in being with our kids. It doesn’t. It just means we are human. You both were saying some of the same points. I honestly feel that if you are not exhausted, you have a huge support network of people or you are lying. It’s human and honest to say that you are tired. No shame in it. It’s also human to feel frustrated when people don’t understand why we are tired.
I’m an asperger. There is such a card application for autism in Europe (or rather to protect us). I… https://t.co/UFNW6zDjKh
As an autistic adult, I find that I feel the same way. Constantly tired at the moment.
Well, plus you’re a good person trying to help your family. And all 4 of them have serious issues (albeit 2 of them much more so). I have to imagine there may be less diligent autism parents who don’t care, and don’t try to help their family. It’s obvious you’re on the side of the angels.
Since this was written in response to my post I’m going to reply. I know your life is exhausting. Being a parent is exhausting, being an Autism parent even more so. But my question still stands- why are you so exhausted by having to be out of your house for 10 hours? Exhausted in general I get, but I was curious because you said you were exhausted by that trip to Cleveland and I (falsely, apparently) assumed there was more to it than just your general state of being. That said, and I am sure I will incur your wrath when I say this, you really do minimize what ALL parents go through, and even what some other autism parents go through. I get that your life is difficult, but you honestly sometimes come across as though you believe that no one has it as bad as you do, and I include other autism families in that statement.
In any event, I do hope you have a nice evening and are able to get a walk in. You’ve been doing really well with your exercise and it’s nice to see you excited about something.
Kim, I wish you well also. Sometimes your questions rub me the wrong way, especially when I’m not having the best day. That’s all. You’re questioning why I was exhausted after everything from yesterday rubbed me the wrong way.
This post was inspired by my frustration with your question but you are the only person to ask things like that. I hear from other parents in similar situations who hate the same kinds of questions because it means that the person asking is out of touch with what’s going on in their life.
It’s just frustrating but we can move on.
I am make this short. I’m in my late 60’s. I have an adult son on the Autism spectrum. Everything that Rob stated in his post about being exhausted is 100% true and right on the money. And to Kim, I don’t know whether you have someone in your family who is autistic. If you do and you are the caretaker, then you know what Rob has stated wasn’t to minimize what all different parents go through, he was just stating the truth of the impact autism has on the entire family, including the person who has autism. This is not an easy road to have to travel. And anyone who believes it is for a parent of an autistic person or persons, then you need to really sit and think about a life where as Rob stated, your mind, your life and everything are totally enveloped by Autism. I’ve gone through and continue to go through what he and his family go through for the past 30+ years of my life, my wife and my son’s life. Anyone who thinks this is an easy existence and not stressful doesn’t fully understand what it entails to be the caretaker of someone with autism. And I have one son to care for. Rob and his wife have three. So please cut him some slack and try to understand where he is coming from. He’s right in what he’s saying and sharing with other parents. It’s his way of helping others who have autistic children and may be at the start of this journey that will affect their lives from this moment forward. I for one have great admiration for Rob, his wife and his children and what he is trying to do with a very stressful and difficult life situation.