I recently shared a report that parents of kids with Fetal Alcohol Spectrum Disorder (FASD) are more stressed out than parents of kids with autism.
The FASD parents who chimed in vigorously confirmed the findings. “Truth,” wrote one mom. “This is news?” asked another.
Many FASD parents report that their friends with autistic children are the only ones who truly understand how challenging life can be. The lived experience of autism and FASD has a decent amount of overlap. So why the “significant” difference in parenting stress levels?
Great question, and it is exactly what researchers Kelly Harding (nee Coons), Shelley Watson, and Stephanie Hayes were wondering. And their results may come as a surprise.
The answer: A decent amount of parenting stress comes from the fact that parents of FASD kids are less hopeful about their children’s future.
“Families of children with autism appeared to feel better supported by their communities and have also been more commonly represented in family research,” the researchers tell us. This support seems to translate into greater levels of hope for their kid’s future.
Not so for FASD families.
In fact, for many of them, their view of the future is rather bleak. They see jail, lack of employment and even early death as likely outcomes for their FASD kids.
“Parents [of FASD kids],” Harding and her colleagues tell us, “may have less hope because there are very few accessible, specific treatments or intervention programs for FASD behaviors.”
FASD families don’t receive adequate social support, and parents feel successful less frequently, which leads them to feel more despondent about their child’s adulthood than the parents of kids with autism.
“We are left to find our own way,” says FASD parent BobBeth Garcia. “Professionals know little or nothing about FASD and society doesn’t want to acknowledge it.”
FASD families feel invisible to both the medical community and policymakers, and the absence of support impacts how hopeful these families can be about their child’s future. So parents worry. A lot.
They “appear to feel like their children are forgotten.” And naturally, the fear is that these children will grow into adults who are forgotten.
My FASD child is a beautiful toddler, so I have not had time to develop anxiety about his long-term future just yet. I can’t picture him in jail or dead, as many parents in the study reported. I just picture him forever frustrated and anxious, always melting down at parties and vacations and holidays, always experiencing something that should be fun as something that instead is awful (for everyone).
Is that the same thing? Turns out, it is.
The Difference Between Optimism and Hope
Hope, according to researchers, means having TWO things: 1) the motivation to work towards a goal and 2) the ability to plan ways to reach that goal. And if the goal is an independent, happy life, there are simply not enough options for parents to help their FASD kids get there. We all have the motivation, but we run out of pathways to reach our goal.
Importantly, hope is different from optimism. In clinical terms, optimism only has one of those two things: it envisions a positive future and therefore believes it will happen. Optimism lacks what the researchers call “pathways thinking” or how to get from here to there. Which means, “just believing it will be ok” is optimism, not hope, and is not terribly effective at improving people’s lives. There need to be resources and interventions available for kids with FASD — actual “pathways” — and those resources don’t exist.
Despair, a feeling I have become deeply acquainted with these past few years, is the absence of the pathways needed to get to that better place.
We can see how this plays out on a smaller scale. My son Zak cannot tolerate birthday parties for more than thirty-five minutes before melting down, which is a problem because his sister Wheezy cannot get enough of them. I’m pretty sure Wheezy would live in a bouncy castle if that could be arranged. When a new invitation arrives, I greet it with a groan of despair. I envision a full Zak meltdown. My spouse greets it with optimism. “I just think this time will be different,” I’m told.
In the few weeks since we read this study, however, we’ve been paying more attention to pathways. Together we have despair and optimism covered; now, thanks to this research, we are teaming up to find new pathways for Zak. We are teaming up to be hopeful. (My spouse is out of town for this weekend’s party so our plan is to have a babysitter accompany me and the kids and take Zak home when he has had enough. I’ll keep you posted.)
Our problems, though, are far greater than birthday parties. On a larger scale, FASD families need more supportive services. More support and awareness will lead to more pathways, without which parents can get locked ion a cycle of optimism and despair. Pathways, however, can give us real hope.
Here’s why it is so important: Higher levels of hope “predict overall life satisfaction, contributes to both psychological and physical well-being, and may be a factor that facilitates positive life changes.”
In other words, parents of kids with FASD need to feel hopeful in order to move forward with the monstrous task of helping their child achieve a healthy adulthood.
“I’m glad researchers are recognizing this,” parent J-Lynn Van Pelt writes, who, without even reading this study intuitively understands the problem. “Perhaps it will lead to more research which could eventually lead to more resources. One can hope.”
“Hope, pray and fight!” says parent Rebecca Ann Lyons-Stevens.
Hope, pray and fight indeed.