If you are the parent or caretaker of someone with autism, you may be like me and must fight off resentful feelings at every turn.   I’ll admit, by nature, I tend to hold grudges.   Maybe it was the way I grew up. Maybe it’s something in my brain…in my Dinna (DNA) as the wife puts it.  Whatever the cause, I’ve had to fight off the unhealthy craving to harbor resentments for most of my life.  And when it comes to revolving my life around Autism, I especially struggle. 

If we’re not careful, we parents and caregivers of people with autism can easily get caught in the sticky net of resentment.  Most of the places we turn to for help (family, friends, therapy, respite etc.) have set limitations on how, when, and if they/it will help. People mean well and maybe they desire to help, but most of the time just aren’t able or willing to put in the work or effort required.  And, the truth is, I don’t blame them. There’s a reason the divorce rate among parents of children with autism is disproportionately high compared to that of the general population.  It’s hard. Extraordinarily hard. And, if you sign up for it, for instance if you marry someone who has a child with very severe autism, you’d better be a saint, or at least enrolled in Saint School…you’re gonna need it. 

In my journey after marrying into the world of autism, I’ve come across very, and I mean very few people who show our son, and us, unconditional love, help, hope and nurturance.  It’s been especially hard for me to grasp/understand the wedge that’s driven between family members because of autism. When I first came into the situation with our son, my assumption was that the families (or society) surrounding such obstacles would ban together to tackle such a monumental challenge. The idea of joining forces seemed second nature to me.  Man was I wrong. Rather, what my wife and I received were excuses, finger-pointing, blame, scolding, empty prayers, corrections and other passive gestures aimed at avoiding any and all hints of actual work: everything but what we needed. We NEEDED boots on the ground…helping us navigate such an isolating, messy path.  At every corner it felt as if family, friends, and society were saying, “I didn’t create this mess, you did….now deal with it!”

For example, almost every time I went to people in desperation, I was met with blank stares and shrugged shoulders that seemed to say “glad I’m not you.”

I told ya…I struggle with resentment in this area.  And honestly, it probably won’t subside until our son gets help from a group home because of his severity.  

I don’t believe this makes me a bad or unspiritual person though.  I believe it makes me human. Broken. Hurt. Real.

By the way, I’m not intentionally pointing fingers at anyone.  I’m merely hoping that I’m not alone in this battle. I’m not writing this post as a therapist, but as a fellow struggling human….

Anyone else every feel this way?

Jeff