A lot has happened in the world since our Fathers' Support Group last met on October 17th. The presidential election is behind us, but the struggle for racial, social, and economic justice continues. Of course, we’ll discuss how today’s events impact us, but we will focus primarily on talking about what's happening within us and how we are growing, evolving, being pushed, and becoming uncomfortable as fathers loving people with autism. The honesty and openness of sharing our best and worst experiences has fueled the determination of men in our group as we are transformed by the experience of family life under pandemic conditions.
We’ve often talked about how to be the “right kind of help” for our families. It's no surprise that we want to get busy and fix things when there's a problem in our home. Cleaning the kitchen or vacuuming, however, might be the “wrong kind of help” when our family needs us to be more actively engaged. Listening carefully or asking how we can be helpful, if we can't figure it out, is what we need to do as opposed to getting busy and believing that we are helping. We might need to get on the floor or to the table and play. We might need to take our child for a walk or help to deescalate a meltdown. We might need to step up and give our partner a break to take a walk or just have a breather.
Another theme of our October conversation was the difficulties with social interactions when children are learning virtually. This can be really hard. The father of a four-year-old, seeing that his son wanted to interact with other children in the neighborhood, wondered with us about whether he should let him try. Another father shared his disappointment and sadness about when his son went bike riding with two neighborhood friends who left him behind by himself. His son was able to find his way home by himself. But, what if that was not the case? We collectively pondered how to be the right kind of help when our sons or daughters try really hard to engage with others but don't experience success.
There is a strong desire to fix the problem, but do we step in? And, if so, when is the right time? We want our children to comply with how society works. Schools have their norms. Relationships have their norms. Work has its norms. But sometimes, we want them to have new norms! We want to fix the world and make it more accepting, inclusive, and welcoming to our children who are different and to treat them with respect. And we’ve openly struggled with how to let them try, make mistakes, while supporting them and keeping them safe. Although this is a heavy load to carry, the honest sharing by men about these issues engendered hope.
A question about the risk of having a second child with autism also came up. Recent research finds the risk of having a child with autism spectrum disorder (ASD) is about 1 in 54, almost 2%. But, if a family has one child with ASD, the chance of the next child having ASD is about 15%. If the next child is a boy, that child is 2-3 times more likely to have ASD than if the child is a girl. The risk of younger siblings having some ASD-like characteristics is about 20%. You can find more information about this here.
While we offer much more support than advice, we concluded that every child is unique and facing the uncertainty of another child possibly on the spectrum is really hard. If a couple doesn't think they can love unconditionally - whether that child is on the autism spectrum or not - then it's best to hold off. One of our regular members who has two children on the spectrum and is on the spectrum himself, shared that he has learned so much from his second child and become a better person as a result.
As usual, we shared the lessons that we took away from our time together, such as working hard to be the “right kind of help,” feeling reassured to know that we are not alone, as well as the reminder that it's OK to make mistakes. We also engaged in our closing silent reflection on what we have learned from each other and contemplating the serenity prayer - accepting the things that cannot be changed, with courage changing the things that should be changed, with the wisdom to discern the one from the other. These messages ring profoundly true in our multiracial, multifaith, and neurodiverse group membership. We hope to see you at our next meeting, Saturday, November 21, at 10:00 AM, Eastern. With gratitude and humility, we welcome you to the safe and soulful space our group is growing into and providing. Come to share your experiences, the joys and difficulties, and learn along with us.
Wishing you safety and peace!
Robert & Michael
P.S. If you're a father and haven't been in touch with us before and want to join in on November 21, email autisminstitute@drexel.edu.
2 responses to “Fathers’ Voices on Being “The right Kind of Help””
Thanks for these important and heartfelt reflections in an incredibly anxious time (incl. for families who have children with autism). Hope to help make a more accepting and loving world for all in the future.
Liked by you
Robert Naseef
It’s always great to hear from you, Ron. Feel free to show up for the fathers’ group whenever it might work for you and best wishes to you and your family for happy and healthy holidays.