This is what it's like (and what it takes) to be the father of a child with autism. Buckle up!
Autism is not a childhood diagnosis; it is a lifetime diagnosis. And it's not a diagnosis that affects one person. It affects the entire family and beyond.
I know this because I am a father of 7-year-old identical twin boys on the spectrum. I don’t profess to be an expert on autism, but I am an expert on my boys.
As fathers, we are an essential component of this autism phenomenon, and our parenting experience is unique. Here are 13 observations (and some advice) that dads of kids with autism will understand and everyone needs to know.
1. We have a different definition of "awareness" ...
To the world, April is National Autism Awareness Month. To us, however, every day is autism awareness day. We'll always be aware of the diagnosis and always work to make others aware and help them understand the disorder.
2. ... and of "self-sufficiency."
The goal of self-sufficiency does not change because of an autism diagnosis, only how we measure and teach it. We understand that each child will be limited in some capacity; however, potty-training, self-feeding, self-dressing, etc. are examples of self-sufficiency goals. Further down the road, we hope to help our children find jobs and live relatively independently.
3. We're more powerful than the Man of Steel.
Superman wore one "S" on his chest, making him only half the man we are. As a Dad to a child with autism, we proudly wear "Super" and "Selflessness" on our chest.
Our powers include super hearing capabilities (hearing the television over verbal stims), super eyesight (distinguishing the difference among chocolate, a raisin or poop on the carpet), and the ability to predict the future (leaving the snack pantry unlocked and the path of destruction that will ensue.)
4. We're very flexible (but not in a yoga sort of way).
Inconsistency is the only thing that's consistent. No matter how much we plan ahead and schedule our days, weeks and months, autism does not work on a schedule (or any schedule, for that matter.) Even the most Type-A of us have learned to allow for some flexibility in our lives.
5. We're anxious about the future.
Anxiety isn't always a bad thing. In fact, the right dose of anxiety is just what we parents of kids with autism need to help us inspire and encourage our child's independence. Telling ourselves that we won't always be around for our child (while completely nerve-rattling), actually pushes us to invest in teaching them to care for themselves instead of enabling them to always rely on us.
However, too much anxiety about our child, unfortunately, can strain personal and professional relationships. We know to not take on too many responsibilities alone, and we're not afraid to ask for help.
6. Sometimes, we're sad. Really sad.
Unfortunately, at times, we experience some form of depression. Accepting our child's limitations and the strain that places on our relationship with child's mother as well as the effects of caring for a high-needs child can have on our job is simply overwhelming.
Additionally, finding the money for treatments and things such as insurance coverage for ABA therapy and developing an caregiving system for school holidays and summer vacation are just as challenging and emotionally draining.
7. We know the importance of teamwork.
We understand besides us, our spouse/wife/girlfriend/significant other is the most important person in our child's life. Autism can be life-draining at times for either or both of you — but luckily not always at the same time. We know how important it is to support our mate being outside of his/her role of caregiver (think: night out with friends or date night for you two) as well as in the role of caregiver by sharing child-care and household chores.
8. We built this village and we love it.
The African proverb "It takes a village to raise a child" is especially true with autism. Your village is most likely some combination of medical providers, mental health providers, education system, church, friends and family. We're essential to building this dream team for our child.
9. We're more than "the guy whose kid has autism."
Autism is only a slice of who we are. We're still a man, spouse, friend, sibling, son, co-worker, neighbor, etc. We still enjoy the things we did before the diagnosis came, and we really want others to understand this. But because autism affects our life, we have to get creative when it comes to integrating all our interests. Many local autism chapters host events like barbecues, 5K runs and family fun days activities that are open to the public. Don't be surprised if we invite you to attend.
10. We take care of ourselves.
We don't get to skip doctor visits because we don't have time or don't feel like going. Our child and spouse are relying on us to help with the goal of self-sufficiency. And for some children with autism, those goals may never be reached.
11. We have the patience of Job.
We're unfazed by our child saying and doing the same things over and over again. (Trust me, if autism was easy, it wouldn't be a diagnosis.) But instead of becoming frustrated, we see these situations as opportunities for our child to practice being self-sufficient and for us to practice mentoring, coaching and teaching.
12. We're the "good humor" man.
Everyone needs a sense of humor, but as a father of a child with autism, we need it for two very specific reasons: A sense of humor helps us manage the challenging moments of autism, and it can be contagious. Our children with autism can tell when Daddy is unhappy and stressed, and it affects their temperament and behaviors. In fact, our humor influences their humor.
13. We are an expert among experts.
Our expertise of our own children far outweighs the expertise of others. They need our input, and we know that. So we tirelessly stand up for our kids in treatment, in evaluations and in life. Doctors, therapists and schools can be replaced. We cannot.
Please feel free to contact me if you have any questions about being an expert father or caregiver to a child diagnosed with autism. And together we can make find a solution that works best for your child and you.