Today I found my tribe

Today, after several years, I attended a support group meeting. It was for parents of severely autistic individuals. Before someone starts an argument over the adjective used to describe my son’s autism, let me be clear- I really don’t have an issue over what you want to call it- severe, challenging, low functioning, or nothing at all. I know my reality and I know my son’s autism. I know that for so many years I spoke to parents on social media and listened to autism experts and felt like they were talking about a different kind of autism, a kind that my son did not belong to. A discussion that was not meant for me, conversations I could not relate to, even though it was from the very autism community we belonged to. 

Today I felt heard, understood, and validated. I found myself nodding at all the stories that were being shared, laughing at the quirkiness that I otherwise find challenging, and sharing the pain and anxiety that seemed so real and relatable and not paranoia.

The self-doubt I had over why so many popular autism interventions don’t work for my son; whether I was doing something wrong, suddenly seemed like a less important question. While everyone around me in the autism community was demanding acceptance and understanding for individuals with autism, here I was reveling in the fact that I could accept myself better. I felt like I was listening to my story from someone else. While they say all autism is different, still, these stories seemed less different, more familiar, and closer to home. 

Suddenly, I felt less guilty about wanting my son’s autism to go away because I was among those who, while would go to the end of the world to help their child, would still choose a life without autism for them. 

I love my son. He makes it very easy to do so. I don’t always have the same feelings about his condition. He is more than his autism. His identity is not just because of his diagnosis, though it can seem like they are one and the same. While I would sorely miss the uniqueness his autism imparts him, I would give an arm and a leg to take autism out of his life, for our lives to no more be inosculated with autism.

When I say this, I know there will be a lot of eyebrows raised because it is assumed that in saying so, I imply that I resent my son. However, those who come to this convenient conclusion forget that not all autism is made the same. I want my son to talk. I want him to go to a regular classroom, and have friends. I want him to independently bathe, brush and take care of his daily hygiene. I don’t want to worry constantly about him dashing off into oncoming traffic, jump into a body of water, or just wander off without being able to process the dangers of it. I want him to be able to navigate the world without me holding his hand even when he is 60 or until I die. I want him to know that if the house is on fire, he needs to run to the nearest exit, and be able to actually read the exit sign. I want him safe, I want him to be able to live on his own and I want him to have someone to love him even when I am gone. I want to worry about the normal things in life. 

While for most people, me saying this would break their myth of my supermom image, my friends in this support group could easily relate to this. It was so easy to take off my supermom cape and talk to people who would fold it down for me, keep it aside and hand it back over when I was done talking. It was cathartic !! 

As the meeting ended, I wondered why are there so few such groups and immediately knew the answer- because they are dealing with severe challenges every day and do not always have the luxury to chit chat or even reach out. A mom I met had never had a time off for several years because her 25 something daughter is severely affected and there is not a moment that she can be away from her. Another mom is still taking care of her 40+ son, alone. Still, they were not here to complain. They were here to find a dentist, a therapist, a sitter, a legal aid (yes, we need paperwork to legally have our child’s guardianship once they turn adult) or a resource that could make the lives of their child safer and easier. They were not here for themselves. 

Tucked in this small corner of the virtual world are these caregivers who are largely left unrepresented, for they are too spent and the little energy they have is preserved for caregiving, which disproportionately gets difficult as they age out and their child grows up. And for those who can speak out and tell the world about autism, the rosy picture of a successful but autistic athlete, singer, artist, author, or motivational speaker gets more eyeballs and ears. For them, Autism is to be embraced, not cured. It’s offensive to use that “C(ure)” word. But for those parents trying endlessly to potty train their 20 something, find a seizure medication that will manage the daily and unpredictable convulsions, helplessly watching their non-verbal child trying to communicate or having to call the cops on their child to help with the violent meltdowns, a cure is what they need. While they accept their child with all their heart and soul, embracing their autism can sometimes be very challenging. Today I was among those parents. I was one of them and I couldn’t have been more comfortable because I found my tribe!