Autism, Life, and the Fear of the Unknown

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My little superhero happily covered in sandtable sand

 

This month marks the fourth birthday of my little superhero, Weston. Since he was diagnosed with autism just over a year ago, the flood of emotions I experience daily has intensified. Let me just note that, prior to this, I would not have thought that possible, given that I am already an intensely sensitive person. I mean, have you SEEN the title of this blog? Where Weston is concerned a typical hour can see me ranging from excited to see progress, to sad about repetitive behaviors that are flaring up, to proud of some new accomplishment or word, and then either remarkably confident or dramatically worried for his future. All children on the spectrum are different. The internet meme I come across often lately is, “If you’ve met one child with autism… you’ve met one child with autism.” In my experience, that is quite true. The spectrum is wide and no two people are alike (this goes for everyone, of course, not just people on the spectrum).

Perhaps most worrisome of all is the dreaded “fear of the unknown.” While everyone has opinions, no one can tell me what Weston’s future may or may not hold (but who can say that about any child?). I sometimes sit and hold on to willfully blind hope that he will have an active and engaged social life exactly like everyone else (nevermind that no one is “like everyone else” is and that he comes from two parents who are quite seriously introverted). I assume his intelligence will lead him to excel in academics and that he will at least participate in athletics or some extracurricular activity. I dream that he will fall in love one day and get married. I hold onto hope that he will have children (forgetting that even neurotypical people often decide *not* to get married or have kids for a variety of reasons). He shows such promise that I just expect that these typical life events are not just possible, but likely for him, regardless of his current diagnosis. He’s a bright, loving, happy child who is intensely sensitive and has succeeded in leaps and bounds over the six months that he has been in school and receiving consistent therapies.

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Isaac being a goof on the slide

The fear of the unknown also seeps in where my youngest child is concerned. Isaac presents as more or less typical. At this point, I have no reason to believe that he will be otherwise. At almost 17 months, he says some words and babbles with seeming purpose, understands most of what we say, makes great eye contact, interacts with people, points to things in what seems like a social way (and to indicate he wants something), and–though he doesn’t wave frequently–blows kisses almost on demand.

Yet, despite the evidence to the contrary, there is still a huge, looming, dark cloud of fear hulking in the back of my mind. Every time he does anything that might be even slightly neurologically unique, I hold my breath waiting for the next shoe to drop. I know Weston’s developmental doctor in Germany meant well, but his statement that Isaac would be watched closely (because of the high incidence of ASD appearing in siblings) puts me a little “on edge” at every well-check and every time we are around kids the same age as him. I ask copious questions of the doctors Isaac sees. I watch carefully to make sure he is keeping up with the other kids developmentally. I enjoy spending time with my friends socially, but sometimes I probe for their observations to make sure I’m not missing anything with Isaac.

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Engaging with Isaac at the Museum of Discovery

Stories sweep through my mind about children who did not present with any autism “symptoms” until they were three, so I will probably worry up to and maybe even after he hits that mark. But, if I am being honest, I may not be that different from parents of neurotypical (“typical”) kids. Do I worry *more* now than I did before Weston was diagnosed? Well, yes. But I worried before, too, just a little less frequently and about different things. Did I wait breathless at every well-check before Weston was diagnosed? No, but I still breathed a sigh of relief at any doctor visit wherein good health was the verdict.

At the beginning of this journey, I was told that I would lose friends and maybe family because of Weston’s diagnosis. I was told there would be typical families who would steer clear of us because of behaviors or even merely because of the word “autism.” So far, I am thankful to report this has not been the case. I have found nothing but love, acceptance, and attempts to understand. Some of the bonds I have with family members have strengthened. No one treats my son badly or, to my knowledge, stays away from us because of his “diagnosis.” I have not lost any friends because of the autism–in fact, I have made many more both because of the autism and just because I try to be a friendly person.

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Weston and his daddy in a canoe at the Museum of Discovery

Some people tell me they don’t know how I manage. Well, I have a wonderful support system, a patient, loving husband, and Weston’s a great kid who is relatively happy and high-functioning. But really, you don’t know what you are capable of until you have no choice but to equip yourself. I say the same thing to people when they remark on how “strong” I am to battle lupus or fibromyalgia for 17+ years. When you have to do it, you find a way. You find the strength. There are moments when being the parent of a child with special needs is probably more stressful and challenging than being the parent of a child without similar needs, but I do not feel I deserve a badge of honor for it.

I follow many autism blogs and Facebook pages and sometimes I have to just hide them when it begins to feel like it’s “us” (autism or special needs parents) vs. “them” (typical parents). I do not think that attitude helps spread acceptance, understanding, or love–and, quite frankly, it leaves a bad taste in my mouth. For some people, maybe that is helpful, and that’s fine. I say, in most areas of life, do what works for you and steer clear of what is not helpful. Stay away from things and people that are hurtful or harmful and look for the good. Look for the good in and for you, your family, and the world. Look at the positive impact you can make and make it. As the inimitable Maya Angelou famously said:

“Do the best you can until you know better. Then, when you know better, do better.”