Finding Connection through the Connectivity Disorder of FASD
Until my boy with FASD came along I didn’t truly understand what connection meant. Sometimes it’s the shadow side of a thing that reveals it most clearly. And, in many ways FASD is the opposite of connection.
World expert Dr. Raja Mukherjee recently named FASD as a “connectivity disorder.” The FASD brain is like a faulty lightbulb: the wiring is inconsistent, constantly sparking and short-circuiting, connecting and disconnecting. This brain-based reality creates extreme sensitivity to threat and an often incoherent sense of self. There's intense anxiety and avoidance of feelings—along with a constant fear of abandonment and annihilation.
These differences in brain connectivity impact the survival level need for relational connections for those with FASD and their caregivers. We all need a sense of belonging to the pack. To be seen, heard, and cared for—consistently and unconditionally. But this is a tall order for any of us. Perfect caregivers don’t exist. Most of us carry some degree of trauma, neurodivergence, or relational wounds that complicate connection.
For caregivers, these inherent difficulties are intensified by the profound relational disruptions in FASD, making building and maintaining connections an extreme challenge. I've noticed that I can feel most isolated when I’m alone with my son— because connection often feels threatening to him. He protects himself from intimacy with the disconnecting rupture of sudden verbal or physical outbursts. And without therapeutic support the knock on of caring for connectivity disorder can put a real strain on connections between partners.
FASD is also a connectivity disorder on a societal level. There’s widespread avoidance, minimization, and denial. People don’t want to look at it. It’s uncomfortable and painful. It's easier to stick with more socially acceptable and fixable narratives like post birth trauma and attachment difficulties —explanations that, while sometimes valid, can negate the realities of FASD, leaving caregivers with feelings of blame, shame and isolation.
And shame thrives in silence.
As someone who already had shame about loneliness and struggled with sensitivity to rejection and abandonment, the experiences of FASD caregiving have hit me hard. It is objectively an isolating experience. As one caregiver said, ‘FASD is something else’.
It’s something different. Something largely hidden. And because of that invisibility—combined with the extreme and erratic behaviors, social misunderstandings and avoidance—caregivers are often literally and metaphorically shut out.
I felt this at my son’s first small, ‘nurturing’ (some might say uptight!) mainstream primary school. There was the literal removal of connection with others when the entire classroom was evacuated because he kept saying shit! And my hopes for connection at the school gate were severed by the tilted heads and the distancing of what felt like pity. I dreaded the singling out of the teacher’s ‘can I have a word?’ And the mortifying tunnel vision of trying to get my child out of there without him kicking or hitting me in front of everyone. The scream inside of Why can’t you just be normal like the others?!! And the conflicting feelings of envy, anger and shame at others, my boy and myself.
This disconnection extends to family and friends. Many FASD caregivers report hearing things like:
“They’re just being kids.”
“You’re both so brave.”
“You’ve always worried too much about him.”
“OMG, I don’t know how you do it—your house is crazy.”
“Don’t forget you asked for this, it was your choice.”
Some of these comments may seem benign or even sympathetic, but they are often deeply disconnecting. Support networks shrink. Invitations dry up. Playdates disappear or have to be avoided. Some parents leave work. And the more people feel the disconnecting threat of isolation and rejection, the more they can defend against this by disconnecting further.
So what helps?
At Neurowise, we’re developing a model of psychoeducation and therapeutic coaching for FASD caregivers that centers connection. This includes:
Understanding our own neurotypes and attachment patterns.
Becoming aware of—and easing—our mind-body defences.
Finding people we can be honest with about our feelings, thoughts and experiences and still feel accepted, not judged.
Creating relationships for different needs—who can you have fun and laugh with? Who gives you energy outside the experiences of FASD?
Skills and knowledge to enable greater connection through rest and respite.
Most importantly, connecting with ourselves: expressing and staying with our feelings, our needs, our unmet longings. Giving ourselves the consistent compassion and care that may have been missing in our own early lives.
This involves vulnerability—but not the kind that leaves us raw and unsupported. We learn to be open and honest in ways that foster connection. This is not an easy balance. It can involve what a friend of mine calls a “trust fall.”
Writing this blog is a trust fall for me. It’s exposing. But I’ve learned that the more I can be open and honest with myself and others the more I feel connected. And when you’re caring for someone with a connectivity disorder, connection to ourselves and others is particularly vital.