Autism Dad: An Honest Look Inside the Isolating & Incredible Life of an Autism Dad

I often get asked what it’s like to be an autism Dad. Occasionally, people will say to me, “it’s good to hear from Dads because there are so few Autism Dads who are really involved like you.” Honestly, I have avoided writing this piece even though it has been on my mind since I started I’mSimplyaDad.com. I just am not sure that people could truly identify with my point of view as an Autism Dad. Nonetheless, I’ve decided to go ahead and tell my story.

What is it Like to Be an Autism Dad: an open, honest look into the isolating and incredible life of an autism Dad.

An Honest Look Inside the Isolating & Incredible Life of an Autism Dad

This post is going to be a bit different than most of my other writings. Typically, when I create a new blog post, I like to provide some type of advice, insight, or actionable steps for my readers. At the very least, provide a little bit of hope or inspiration that may brighten up their day. In this article, I am simply offering an open, honest look at what it feels like to be a stay-at-home Autism Dad.

In Defense of the Typical Autism Dad

Before I dive into my own feelings, I’d like to take a minute to defend my cohorts that serve their families in a more traditional sense. Being an autism Dad is hard. There’s no getting around that. We all deal with it in different ways. Moms may think their husbands are out of touch or care more about their jobs, but that may not be the case. It may just be a case of they don’t know how to cope with the reality of having a kid with autism. It’s heartbreaking to realize that you’ll never get to take your son to his first baseball game, talk fantasy football with him, or see him take his first girlfriend on a date. What you thought your life would be like as a Dad gets turned upside down when autism enters the picture.

For some Dads, working 60 hours a week is the best way they can provide for their families. Autism isn’t just hard for us Dads to deal with, but it is also insanely expensive. Dads appreciate this and many of them work the butts off to make sure their kids can get everything the need. To some Dads working is their way of being a good Dad. Being a stay at home autism Dad, I honestly can’t relate to this perspective, but there is a great article written from this perspective at the end of this page.

Where Do I Fit In?

If being an autism Dad isn’t isolating enough, being a stay at home autism Dad makes it so much harder. I don’t fit in anywhere. I can’t relate to my working counterparts. The go to conversation for most guys is their jobs. Obviously, I don’t have anything to contribute. Guys don’t want to hear about your kids, which is of course my job. Likewise, I don’t care about their jobs because I can’t relate to it at all. I don’t want to hear about how many hours they had to put in to get this “huge” project done. While they were flying to New York on business last week, I was busy scrubbing poop of the walls and preventing my son from banging his head on the floor. You see the disconnect?

Some guys like to talk sports, but the sad fact is that I have become so busy with autism, researching how to help my son, and taking care of the day-to-day needs of my family that I am now out of touch with the current sports world. To make matters worse, some Dads will even complain/make fun of their wives. They’ll sarcastically say things like “my wife says we have to limit the sugar so no more bananas for the kids….” This inevitably leads to a conversation where they think their wife goes too far, but they just go along with it. I just politely smile, all the while realizing they that are essentially making fun of me as I say very similar things to my wife.

Sad but True

It’s gotten to the point where I almost avoid contact with other Dads. Even when there are events with fellow autism Dads, I tend to find a reason not to attend. As much as I would love to make connections with other Dads and maybe make a friend or two, it’s just easier to avoid these situations. These events remind me that I don’t really fit in anywhere. Honestly, it makes me sad, so it’s just stay in my bubble and avoid the potential letdown.

Moms: Polite but not Welcoming

Most Mom groups, special needs or otherwise, don’t want to let a Dad in their club. I remember trying to get the boys involved with playgroups even before autism came into the picture. The moms were always nice and polite, but I never felt welcome. I tried several outings, but I never felt like I was part of the group. These playgroups are social groups for stay-at-home moms as much as they are for the kids. I was hoping they could be an outlet for me to meet people too and maybe make a friend or 2. It was clear this would not happen in a Mom’s group.

The rare stay at home Dad playgroups were quickly out of the picture once autism became more obvious. Ethan didn’t really play with anyone, and often times the meetups were at McDonalds or some fun pizza joint. We started the gluten free diet immediately after the diagnosis, so Ethan could not eat at these places, which sparked a couple of meltdowns. It didn’t take long for me to give up on the idea that playgroups would be a good place for us all to make friends.

What Do You Do?

The loneliness of being a stay at home autism Dad is made more evident when you realize you don’t really fit into society either. There is still this lingering stigma that all Dads should be working. If someone needs to stay home, it should be the Mom. I can’t tell you the awkward conversations I have had with people that start with the simple question, “What do you do for a living?” Most people are polite, some will even say how great it is that I’m with my kids, but in reality, I can just sense their disapproving sentiments.

Similarly, a trip to the grocery store will yield a minimum of 2 mean looks from strangers. Of course when Ethan is having a hard time in the middle of Costco that number is exponentially higher. All autism parents get these looks during public meltdowns, but it’s so much worse when you’re a Dad. I’m sure my own insecure perception makes this feel worse, but I’m quite certain most of the shoppers are thinking that I have no control over my kids.

What is it Like to Be an Autism Dad

You Don’t Do Enough for Your Family

As if it’s not isolating enough to be a stay-at-home autism Dad, the loneliness cuts even deeper when your own family members question your efforts. Not that long ago, someone in my family said, “I don’t like Dave. I don’t think he does enough for his family.” This is by far, the most hurtful thing that has ever been said to me or about me. It states perfectly the very thing that I believe the rest of the world thinks of me. Of course, I don’t agree with it, but that doesn’t make it any less hurtful.

From my perspective, I am now the first person in my house to wake up in the morning, and the last to go to bed at night. I cook 3 meals from scratch everyday (and two snacks). I do all the work of a stay at home Mom plus the chores or a working dad (i.e. the lawn, garage…) At the same time, I am doing countless hours of research learning how I can become healthier, and how I can help treat my son’s autism. I’m reading about how to handle my stress level, so that I can be a better husband and support my wife even more. Meanwhile, I’ve completed a Master’s degree, worked part time, and now I am trying to help other parents though my blog.

Why is that Not Enough?

Apparently, that is not enough. The only reason I can think of is because I’m not working. We circle back to the stigma that I have to face everyday. Despite being extremely strapped financially, I choose to not work. It is what’s best for my family. My career is my wife and kids, and the only way I can meet their needs is to be home with them. We all make sacrifices for the betterment of our families. Why is my sacrifice less valued? Why is my sacrifice viewed as laziness in the eyes of others? I choose to live this life that can be isolating. I fight through the loneliness because I know that is what my family needs from me. Why is that not enough?

Am I Really Doing All I Can?

Of course, inevitably, there is this doubt that creeps in. Am I really doing all I can? Should I be doing more? Perhaps, the reason that statement was so hurtful is because there is some of my own guilt behind it. Not for the same reasons, but I do have a fair amount of remorse. Every night, I reflect upon the day. Every night, I have the same regrets. “I should have played with the kids more today”.  –or-  “Oh no, I forgot to give this supplement to Ethan”  –or-  “I should have handled that situation better and not lost my patience.”

Every evening, I say I should have done better today, and I beat myself up a little bit. Then, I know tomorrow is a new day and a new opportunity to be better. Before I go to bed, I psyche myself up for the challenges and opportunities that the next day promises to bring.

I’m Actually Pretty HappyWhat is it Like to Be an Autism Dad

My life as a stay at home autism Dad is not all bad. In fact, it can be pretty freaking amazing. My son has changed my life for the better in so many ways, and nothing gives me more joy than seeing his eyes light up and his smile gleam. I also have 2 other pretty fantastic kids who are absolutely incredible. I am proud to be their Dad. My kids are my “Why”. They are why I work so hard everyday, and they help me overcome the loneliness and get over my insecurities.

My family is why I wake up every morning ready for life. I try my best to focus on the good. To focus on the smiles of my little guys and the small victories we have each day because that’s why I keep going. I take my bruises. I take the punches the world throws at me. When I fall down, I get right back up. That’s the life of this autism Dad.

 

Can You relate to this article? Did you gain any insight to life as an Autism Dad?

 Share your thoughts in the comments section.

What it Feels Like to be a Special Needs Dad-Stuart Duncan 

21 comments

  • This is so beautiful, thank you for sharing! I hope you remain confident in your decisions because you alone know what is best for your family. I am so glad that you are helping others in your situation and bringing awareness to all!

  • What a great post from a dad’s point of view. Never feel like what you are doing is not enough! You and your family are doing what you feel is best for your way of living, Being a stay at home parent is a job, it doesn’t matter if you are the mom or dad. And running a blog is another job, therefore you have 2 jobs. Bringing awareness to Autism is an exceptional feat. So many people don’t understand it all or choose not too. Just keep doing what your doing and the rewards of it all will come! Especially for your family.

  • Thank you Christina! So much!

  • Thank you too Emily. I was actually really nervous to publish this, so your words were very reassuring.

  • Thanks so much for sharing this point of view. Autism is isolating for moms too, but at least we have a large network of autism moms. My husband works mostly from home, so I’m sure he experiences a lot of what you are going through. Your family is so lucky to have you – and you are making all the difference in the world to your son with autism.

  • Brian Russell

    I don’t see you through the lens of any of those social stigmas; you are certainly rockin’ your role. Those who can’t see that you’re pouring out your life for your family are just ignorant of what your role entails. I know Candace works way more than I do on most days, yet there’s no “check” to deposit to compensate her efforts. Instead, her (your) efforts are making lasting deposits in the lives of your family. Those who think otherwise have no clue what it takes to be a stay at home mom/dad with a special needs child. Great post, Dave. Thanks for sharing your thoughts.

  • John

    Terrific and honest post! It’s a long road for sure – you’re doing a great job. Thanks for writing this!

  • My pleasure John. Thank you for reading!!!

  • Paul

    While I am not the stay at home dad, I do work from home and can relate to almost everything you wrote. My son is also named Ethan and has many challenges but he has and is still changing me into a better person. The main reason my wife was the one to quit her job is simply she is just a more patient person than I am, something a parent of an autistic child needs an infinite amount of. When I am on the phone, I always have a finger on the Mute button as at any given moment, with no warning, there could be an explosion of emotion! I understand not fitting in, while I do have my job, i find it very impossible to relate to other guys and their “problems”. I find I have drifted further from my friends and I have a hard time dealing with that. I am dying to go out and have a beer (can be GF) with a dad and just speak about fun subjects like Mold, EMF, Pee, Poop and different therapies (those that work and those we find are a waste of time). I see so many people these days that are just doing the minimum for their kids. My wife is an absolute saint, She is like you takes care of our son, cooks fresh cooked meals (GFDF, soy free and low oxalate), home schools him and is pretty much the most amazing person I know. Most men cannot hold a candle to what she does, yet I know you deal with the same impossible situations every day, and you are amazing at putting your kids first. I can tell you I do not complain about my job, it is my job, I do it good but it is there for the sole purpose to pay the bills, of which medical is enormous. We live in a society that still looks down on our children when they do not act “normal” (whatever that is now), even though more are getting sick everyday. It is reading things such as your post that gives me hope that there is a chance for the world still. Keep it up, all the struggles are worth it and the bad looks and comments are so not worth paying attention to. Glad to know others can relate to our struggles!

  • Sharing this with my stay at home husband who cares for our sons (one with autism). He rocks it every day as I am sure you do as well!!! Great post!

  • Thanks Kellie. I hope your hubby likes it too.

  • Geoffrey

    Great article!! I can relate in many ways

  • Jason

    You nailed it. As a stay-at-home Autism dad myself I want to say thank you. Thank you for letting me know I’m not alone. You summed up many of my feelings of inadequacy and depression, and I commend you on your ability to “psyche yourself up” for another day. (Stealing that one) Keep you chin up brother!

  • Gina Perales Waterman

    Love the honesty here. You are doing something so incredibly against the grain that others (male and female) just don’t know how to deal with that. It’s a stay at home mom world; so people just don’t have enough examples of great dads and husbands like yourself. I know I never met any until coming into this group of autism parents. Seriously. It’s rare. You are inspiring and lifting up others. Keep up the good work for you, your family, and most of all Ethan. You can see the love expressed in the video of your return home.

  • (Www.DianaDivulges.com) What a great post! Thank you for writing it. Thank you for your willingness to be honest. I wish you lived in Louisiana, you and your kids would be oh-so welcome on our group play dates! Keep on keepkn’on!

  • Zareena

    People will always have something to say. Whether we are working or stay at home. At the end of the day it is us and our family which matters. So please keep your head high and live you life happy. I have a son with autism too. Everyday there is something to be worried about. But that’s life. Sometimes those angels make our lives better even though we worried about them every single day. May God bless you.

  • Julie

    I’m an autism mom and you are correct, nobody will ever understand what it’s like to wake up early and soak your child in the tub and attempt to make walls with poop smear sanitary. Or the fact that you have holes in your walls from your child banging her head. Never feeling like you’ve done enough and craving that miracle moment where your child begins to function “normally” While autism teaches you so much, it’s so incredibly hard to watch your child be “stuck” in a body they can’t control. The stares we would get in public, especially as my daughter hit her teens was just unbearable. Over the years I began to realize that I didn’t care what others thought of me, they lived in a totally different world than I did. I didn’t like to go out in public and I didn’t like the way people looked at my autistic child. She knows what those looks means. Even though our autistic children my seem to not understand the world around them, let me assure you that they do, they are just processing everything so fast that it gets jumbled. The isolation that families with autism feel is real. But then again, it makes you a closer family and it teaches your kids not to be judgmental of others situations. Kudos to you as a stay at home autism dad. It’s not easy, but it’s worth it. You will never please those outside of your situation, and then again, why does that matter? Your time each day is more than filled..

  • Jon

    Fantastic article, my wife does your role and it’s isolating and very tough. You’re doing a great ‘job’, keep it up. I know it’s tough working and coming back to the same issues day in, day out. Stay strong and I’ll keep battling on.

  • Martha

    Wow. Thank you for sharing. I just took my son for evaluation and turns out he has severe Autism and not mild like I was told. Its very hard but I still work thanks to my mother that helps me so much. I understand what you go through and wish you and Ethan the best.

  • Autism Couple

    You’re really brave to write this. We have 2 boys on the spectrum and my husband and I are an autism couple–it takes both of to manage the 100 hrs plus a week involved in regular life tasks and everything bonus our 2 boys add to the family picture. I completely empathize with you as does my husband. Your family is so lucky to have you and we wish you joy.

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