The autism community is frequently vocal about how marginalized they feel when neurotypicals share their personal experience of marriage with ASD partners. They often express that neurotypicals have a lack of tolerance for autistic behaviors, that we perpetuate negative stereotypes of autism, that we are ableist and discriminatory and infantalizing (by merely voicing our perspective). Essentially, it seems to be a common perception that our neurotypical needs and expectations within an intimate partnership shamelessly promote disdain or contempt for autism.
It’s my experience and observation that neurotypical women married to autistic men, and often raising neurodiverse children, feel anything BUT hatred toward autism. What I notice in NT wives and mothers is a deep grief toward autism sometimes. Grief includes many difficult feelings, some of which might be anger and frustration, yes. Autism can feel like a window of glass separating us from true connection with the ones that we love most in the world. We see our beloved spouse and children on the other side; we can hear them and try our best to communicate with them through the glass – but there is no ability to truly touch one another, or to easily hear each other. And the glass makes it difficult to understand the nuances of our tone, to make out of every single word or the complexities of our meaning. Sometimes we have to truncate our speech and swallow the words we wish we could share, just to convey the most basic and concrete message. But we are built to be wordy, to share freely and fully, and that is simply too much to be understood through a thick wall of glass. The neurotypical is left perpetually yearning to embrace and be embraced by the ones we love so fiercely. But all we can do is place our hand on the glass and look inside at their inner world, never fully belonging. Knowing that usually they are most content in that inner world (without us). It’s a wound in our neurotypical hearts. Grief is all the love we desire to give, knowing it cannot be received to the fullest extent we hope to impart.
There is no hatred for autism. There is frustration, and longing and even fury sometimes. There is a protective fear when we witness the unique vulnerabilities of autism in our husbands and children, many of which are invisible to the world around us but so fully displayed in our homes. There is a feeling of obligation toward autism, because we worry for our children and how they will navigate adulthood without our care and supervision. We worry when our husbands have burnout or shutdowns and seemingly need to escape us and the world. It is sometimes a misplaced sense of worry and responsibility, but it exists. We puzzle over how our family members can be so brilliant, perhaps very academically and professional successful, yet struggle with fundamental executive functioning. We know if they forget to eat, or can’t get up on time, or get overwhelmed by noise, or didn’t sleep well or are exhausted from masking – a spiral might happen. We feel like a one-woman crisis prevention team – out of love, though sometimes misplaced responsibility. Trying to protect our autistic loved ones from the very symptoms of autism that make their lives so hard sometimes. Does autism have extraordinary gifts and talents? Yes. And also extraordinary vulnerabilities that break our empathic, neurotypical hearts.
I witness the way that neurotypical wives and mothers give until they are spent, nearly always unseen, not needing recognition but wishing for some sense of understanding from their family members. They dig deep to continue giving at their own expense. Neurotypical women carry a profound sense of over-responsibility. They over-function because their autistic loved ones need caretaking and accommodating.
Grief for autism includes all the stages. I see when women try to bargain with their spouses. We have all done it. Please, please, please. I will do this, if you will do that. I will do this even if you don’t do that! Because it has to be done! The desperate, frazzled begging and pleading for change. Forgetting that there is a ceiling from neurological limitation, and that light switch can’t happen. The ASD partner needs structure, accountability, concrete and specific instructions – preferably from someone who is NOT her, because he doesn’t want to feel controlled. And he feels controlled when she requests that he finds someone to help fix this enormous disconnect between them. So she keeps trying to bargain, increasing the grief, which increases his anxiety, and drives him further into avoidance and resentment. There is denial when perhaps he goes through a season of having energy to try really, really hard (usually after she’s threatened to leave or he realizes there is a point of no return approaching). She thinks perhaps all the difficulty is behind them. The depression, another part of grief, starts to lift. But he can only mask for so long, and then it becomes hard again, and she is crushed. Because autism is hard in an intimate relationship for a neurotypical woman. It just is. And stating it is not hatred for autism, it is not being ableist, it is not discriminatory.
Perhaps some are still offended to know that autism causes feelings of grief in neurotypical women. And that’s okay. Feelings are not wrong, they just exist. Acceptance is also a stage of grief, and I find that when both partners can strive to accept each other’s feelings and differing needs as simply existing vs. being right or wrong, there is a lessening of sorrow.