Certain questions are posed to me from time to time along the lines of “What is it like having an autistic child?” What is the most difficult part of having an autistic child? What are Declan’s biggest challenges? Your biggest challenges? Your family’s biggest challenges?
What My Autistic Child Is Like
To be perfectly honest, I love getting these questions. Autism presents itself in so many different forms and often times it’s simply not recognizable from one person to the next. There is certainly still stigma about the word autism. Some people still talk about it with furtive glances and hushed voices. I’ve found that if I can show people that I’m comfortable, open and willing to talk about it, they really do have a genuine curiosity and desire to know more.
It’s a shame that so many people are uncomfortable with autism. I had a realization a while back. The quicker I could accept this discomfort from others the quicker I could move on and be the most effective advocate for my son.
Why are people uncomfortable talking about this? Why does the mention of the word autism sometimes set people off on a trail of denial and justification? When we first began telling people that Declan was autistic we received a LOT of doubt from family and friends. Many people would tell us “but he seems so normal”. They would point out specific traits that Declan did or did not display. Some people would go on to say he couldn’t be autistic because of that. There was a lot of denial that stemmed from, I think, two sources: Love and discomfort.
Most people don’t understand autism like they understand the flu or the common cold or even cancer. You can look at a common illness like the flu and think back several days. You’ll remember that you were around a coworker who was coughing. They were then absent from work. You can then pinpoint that is where your sickness stemmed from. You don’t have to understand the biological mechanism at work or the intricacies of the immune system to understand that you’re sick and accept what’s happening.
This is not so with autism. What causes autism? Is it genetic? Is it environmental? While it’s accepted and is common knowledge (or should be common knowledge) that nobody can catch autism, and that people are born with it, this is about the only definitive thing we know in regards to where autism stems from. We don’t know what causes autism. It can have components linked to genetics, but not always, there are maybe some environmental aspects linked to causation, but they’re not proven… we just don’t know.
And this makes people very uncomfortable. I get it. People have a desire to know. They have a need to know. When the answer that they must accept is “we don’t know” it creates discomfort.
The fact that autistic kids, adolescents and adults have a tendency to act different without knowing exactly why also makes people very uncomfortable. If someone walks different due to a disability or injury, people are familiar with that. They’re comfortable with that. If someone acts different due to stress, anxiety, or anything out of a list of conditions that make someone act “differently than normal” people are generally comfortable with and can accept it.
Autism is different. It is misunderstood and it is oftentimes vaguely understood. By that I mean that sometimes people will have preconceived notions of what an autistic person “should be like”. Yes, while there are definitely hallmarks of people on the spectrum, Stephen M. Shore phrased it perfectly.
If you’ve met one individual with autism, you’ve met one individual with autism.
That is precisely why so many people didn’t accept that Declan was autistic at first. He didn’t display many of the traits that people associate with autism.
Getting that out of the way… So what IS it like having an autistic child?
It’s awesome. It is absolutely awesome.
Christa and I are fortunate to have two sons. One is autistic. One is not. The autism component rears its head every day in totally anticipated ways. It blind sides us and knocks us to the ground. Having an autistic child creates opportunities for such intense and beautiful perspective all the time and that is something I truly value. Watching the development of Silas versus Declan, for instance, has been an unimaginable gift to experience. Not to say that it’s been a better or more valuable experience. It’s been the most incredible thing in my life to watch Silas pick up a toy and play with it. Something that “every child does”. Something that Declan never did; has never done.
The worry, uncertainty and daily struggles with sensory input, eating and rigidity are there, too. That part of autism sucks. It just. Plain. Sucks. Not knowing if something Silas does will set Declan off. Trying to keep the peace between the two boys while finding the happy medium so Silas doesn’t piss Declan off to the point he’s so unregulated that he’s out of sorts for the next 72 hour. At the same time letting Silas experience his childhood through normal rambunctious, loud little boy play.
Having an autistic child is eye opening and life changing. Everything begins to be filtered through autism. Many, if not most decisions we make are part of this filtration process. When we wake up in the morning is dictated by Declan’s therapy schedule (or if one of the boys decides to wake up in the middle of the night to party). When we go to sleep at night is linked to this schedule as well. Meal times, car rides, routes we take while driving, T.V. scheduling, iPad usage, the music we listen to, the songs we sing, the list goes on.
Learning about my autistic son and growing along side of him has been, by far, the most challenging experience of my life. I have gone through some of the most sublimely frustrating moments with him, some of the most rage-filled seconds and feelings of utter desperation and helplessness. On the flip side of the coin, though… man. I have never felt so fulfilled. Something as simple as achieving eye contact with that little boy can erase all those feelings in an instant. It’s the most incredible feeling.
The most difficult part for me, personally is knowing that Declan wants to communicate with us. It’s seeing him try to tell us what’s on his mind, what he wants, what he needs. While he is making serious progress, there is still so much frustration because of his lacking ability to communicate.
When we see the times that he does succeed, we see that little boy just beam with pride at being able to tell us he wants more tickles or to spin in the swing. When he can’t though, he gets worked up and tries harder and loses control. As his father…the person who is supposed to be able to help him through hard times, not being able to help in most of these situations is the hardest for me. I can deal with being kicked and bitten but I have a tendency to get hyper focused and sort of disappear when Declan gets overly upset and frustrated.
We have daily struggles, absolutely. We have absolute uncertainties about what, exactly the future holds. When I think about it and put it in perspective though, who doesn’t? We have different struggles than most. I think it’s safe to say we have more difficult struggles than many. At the same time, there are others who certainly have much more difficult days than we do. I am so incredibly thankful that we have the two little boys that we have and that we are their parents. As Christa said earlier this evening, they fit us.
The juxtaposition between these extreme highs and lows is sometimes pretty wrenching but it has allowed us as parents and as people to experience a more vivid life and to be more present. Our days are exhausting and I don’t always feel as though we came out on top, but there are overwhelmingly many more good days than not.
Autism has demanded a very steep learning curve and we have tried to absorb as much information as possible along the way. It is a large part of who we are today. Without Declan, we would not be the people we are today.
What is it like having an autistic child? The best, most succinct way I can sum it up, I’ve already said.