E was difficult to assess, not in the official autism assessment, but all the others leading up to it. We would get into an office full of toys that didn’t need to be shared, with two adults who’s sole focus was him and, shockingly, his behaviour was perfect. On one hand this makes me smile and on the other hand it makes me want to scream. Smiling first.
My maternal grandmother lived to be 95 years, 10 months old. She was fierce, funny, stubborn, social, and kind, and I loved her so deeply that i named my daughter after her. Living to such an age, though, she had many close calls. She lived a province away and when we would get a call saying she was sick we would hop on a plane in fear that it would be our last chance to see her alive. And do you know what would happen EVERY time (except the last time, obviously)? She was so thrilled to see us that she would bounce right back to perfect health. It was insanely frustrating at the time because we could never get a good idea of how she was really doing.
The difficulty we had with assessing E makes me smile because it reminds me of my grandma and reminds me that we are connected to family even after death. Like my grandma, E is super social. He loves to meet new people and is very friendly. He will go up to almost anyone and ask any question. This trait masks his ASD well. People see how friendly he is and cannot imagine that he has trouble socially. He does struggle socially, however. After the initial interaction of running up to someone and asking them something, he doesn’t know what to do. He stands uncomfortably close. He asks question after question without allowing response. He lashes out when play isn’t going his way. His words don’t match his tone. He yells loudly to prevent others from being heard. He can’t read social cues. Kids give up on him quickly because he’s uncomfortable to interact with.
And now for the screaming. No one sees that behaviour in an office. For an hour in an office with said toys and adults who don’t need to be shared, he is polite, well-mannered, thoughtful, and sweet. I would roll my eyes so hard in these meetings I thought they would get stuck that way. I would think “This effing kid is making me sound like a liar!” Inevitably, he would have a huge screaming fit within 20 minutes of leaving. I would go home, cry and scream, then I would pick myself up the next day and call back whatever professional’s office we had been in the day before and tell them how my son’s behaviour in their office did not match his behaviour outside of it. So they’d send someone to observe him in his habitats. He was observed in his preschool, at the park, and at home. And it always ended with the same exclamation “wow, Jenny, he was great, not at all like you described.” For months I felt like all I did was sit in offices trying to convince the right people that my son needed help, that we needed help parenting him. It took a lot of perseverance. I had many desperate moments where I felt helpless. I had many crying fits. I had many anxiety attacks. I felt for a long time that I was the problem, that I wasn’t cut out to be a mom (I’ll write more about that in another post). But I kept going. Why? Because I had to. Because I felt I didn’t have a choice but to keep telling my story and asking for help. Because I couldn’t keep living in survival mode, being afraid of my son. Because I love that boy something fierce and will fight to make his life easier.
When I was finally told to seek an ASD diagnosis, I was sad, yes, but mostly I was relieved. My feelings that something wasn’t right had been validated by people who spend their careers working with kids of differing needs. It confirmed that I was not a liar. Hallelujah! That meant everything to me. It still does. When my son’s behaviour gets out of hand I still roll my eyes, get frustrated, wish I could leave, but I also feel validated. There is a reason E is like this and it’s not because of something he did and it’s not because I’m a bad parent.