What if the antidote to grief was acceptance? I believe it is. My three children are all autistic. My husband and I are not sad about it. I did not grieve at any of their diagnoses. We already knew and autism was so intertwined with our daily life that there was no devastation whatsoever upon hearing the diagnosis.
For years I kept quiet about my lack of grief because everywhere I looked I saw advice to parents of newly diagnosed children that always included “Allow yourself time to grieve”. This didn’t make any sense to me, it still doesn’t. I didn’t lose anything. My children’s lives and dreams were always their own. I never sat around thinking what college they would go to or what things they would do to impress me or make them worthy of my love. They don’t owe me anything. I wanted to become a parent. They didn’t ask to be born and are not under any obligation to perform for me on any level. I am honored just being their parent.
Autism is not something that “happens” to anyone’s family. Even if you love your child more than your own life, saying you love them *but* you would take away their autism in a heartbeat, means there are strings to that love. When someone is autistic, it is completely woven into one’s personality. Autism means our brains function differently and it is just a different neurology, not a disease or a disorder. No one wants to see someone they care about struggling but demonizing autism doesn’t help your children or autistic people.
So yes, support and help autistic children and adults. First and foremost, this means total acceptance and listening to autistic advocates. It may look like helping your child communicate via AAC and to ensure their sensory needs are met. Treat neurodivergent loved ones with the same compassion and respect you would give to anyone you cared for.
When you grieve and feel like they are broken, even if it isn’t said out loud to them, they will know. Growing up I felt defective and like I didn’t belong anywhere. I didn’t know I was autistic until I was an adult. Had I been given unconditional acceptance as a child, I would not have struggled nearly as much.
If my older son A wasn’t autistic I would miss out on seeing the indescribable bliss he gets from spinning the kitchen whisk in a circle. I wouldn’t be able to see him flap and absolutely quiver with joy watching the same 30 second Curious George scene for the thousandth time. I would miss so much in life if he had not taught me to slow down and notice everything. Like how he swirls his hands in water and makes waves, then watches slowly, mesmerized. The quiet stillness of him lying on his back in the bath smiling at whatever fun memory he has in his head at that moment.
If S wasn’t autistic, she wouldn’t greet me every day with lines from her favorite movie or ask me the same question over and over because there is such comfort in repetition. Were she not autistic, she may not touch and smell everything and experience the world with all of her senses heightened in such an incredible way. We wouldn’t script and laugh in unison. Our lives would be unrecognizable to me. I would miss this.
If O wasn’t autistic, we wouldn’t be able to hear his happy stims all day. He wouldn’t flap wildly, constantly, with the freedom of a child who has never been pressured to be anyone but who he is. Maybe O would join his peers in play instead of exploring the playground dirt and trees and running carefree in dizzying circles. This wouldn’t make him “better off” or more worthy. Fitting in isn’t what he was meant to do. He has made that clear from day one. He goes his own way and I will never prevent him from doing so. He doesn’t need to act a certain way or “fit in” to be loved unconditionally.
The irony is, in expecting nothing from my children except that they be exactly who they are and who they were born to be, I have been given immeasurable gifts. Every day I am lucky enough to be able to see how incredible they are and how they see the world and know that it is right and not to be fixed.
They are autistic. We are autistic. We do not need pity or sadness. I should not be called a “super parent” for being fortunate enough to have three autistic children. Taking care of them makes me grateful. I am honored to be able to share my life with three amazing children with such distinctive and interesting personalities. I like us and I like how our brains work.
This does not mean our lives are free from challenges. What life is free from challenges? What guarantee is there that a child of any neurology will live on their own at a certain age or have a certain type of relationship or life? There isn’t. Your child isn’t born with an IOU for a college diploma or grandchildren.
When you sign on to be a parent, your job is to love your child fiercely and protect them. I am not my children’s voice. I advocate for them when they need it. I am not the voice for my non-speaking son. He communicates constantly and just because it is not spoken language doesn’t make it any less valuable of a means of communication. I am a guide, providing resources to help him communicate in the way that best suits him. It is not my right or place to assume to know what he is thinking or what he wants.
So, no, I do not grieve the non existent children that I was somehow supposed to expect and feel entitled to. I feel grateful and love my children so much that it hurts. I do not want to cure them or change who they are. I am here to give whatever support they need.
I will continue to say no to harmful therapy that demands compliance or that they behave a certain way to fit in with someone else’s idea of socially acceptable.
I will not allow them to be disrespected or othered.
I will continue to empower them to advocate for themselves.
I will follow their lead.
I will never again be silent when peoples rights are being threatened.
I will never stop trying to help people see that autism is not a dirty word or a disease.
I am not jealous of parents who don’t have autistic children. Each of our families has it’s own joys and challenges. It’s real and it’s life. My family doesn’t look like yours but it is not a reason to grieve.
I will not limit my children with arbitrary and useless functioning labels nor allow the numbers and scores on an assessment to define them.I will continue to encourage them to question everything and make up their own minds.
I love my “non-compliant” and unapologetically autistic children.
What if instead of “giving parents permission to grieve”, we give them permission to accept their children, even in the face of the fear mongering and ableism that permeates our society? What if we say no to 40 hour work weeks of therapy and yes to childhood? What if we said no to grieving about autism?
This is the path we took and I will never regret it.
I will never grieve about my children’s neurology.
I will watch them flap, spin, stim freely with no stigma or shame. I will continue to find myself breathless and amazed that a person who has messed up so much could be given the chance to live with such amazing human beings. I will remain thankful and humbled that I have been given the honor of watching them grow and being their friend.
I cannot grieve what was never lost.