This is who we are and this is how we got here..
My eldest son, James will be 19 in December. He is on the Autism spectrum (High Functioning). When we had James diagnosed at the University of Washington Autism Center almost 9 years ago one of the things the neuropsychologist told my partner and I was the best thing we could have done for James leading up to his late diagnosis was to treat him “normally”. What this meant is that James had chores and household responsibilities appropriate for his age and was held responsible when his behavior needed correcting even when we knew something was different about the way James was seeing the world and digesting experiences.
I went home after that visit and cried for two days. I couldn’t even look at my son square in the eyes. See what the doctor at the UW thought was great about how we had parented James up to the point of diagnosis, was exactly what had me riddled with guilt. Guilt for every nag and fuss and sarcastic response or impatient look or tuned out tangent. I felt embarrassed for every time I pushed him to be involved in an organized sport or sit through a loud movie or make eye contact with a stranger. And the more I read up on Autism Spectrum Disorder (ASD) the worse I felt.
And then one day I got over it. I think it was during a conversation with my sister where she pointed out that I hadn’t been even close to being abusive or bad to James. I had been loving and firm, just like our father had been with us. And I knew I was doing my absolute best so on that day I decided that I was going to use my own parental compass and parent my kids exactly the way that I wanted to. Always attempting to lead with love.
For the most part, for the last 18 almost 19 years James has been nearly angelic. When my friends were having issues with their adolescent sons I was boasting about the cake walk I was on with James. The biggest challenge I had was securing supportive services for him through school. And the funniest part about that is I would work my butt off to secure a service and James would work even harder to prove he didn’t need it or very little of it.
It’s been my experience that finding support for non ASD presenting kids is hard. And let’s be clear, finding services for non neurotypical people is a monster effort and should be way easier than it is. But I feel like diagnosing and finding support for a non verbal child with classic ASD signs and symptoms is more straightforward than diagnosing and supporting a child that presents as neurotypical but does really quirky and sometimes dangerous stuff off and on. Most of my challenge around getting supportive services after our diagnosis was that at around age 13 James asked that we stop participating in the local Autism Awareness campaigns and walks and to stop advertising that we were an ASD family to our neighbors and on social media. I agreed but I found that after a while I felt closeted and shut off from other ASD parents and resources. The only support I had was on Facebook and the groups I joined never seemed to have parents or ASD members having similar experiences as us.
The other part of the challenge is that my son’s high functioning autism (HF ASD) has what we in my family call Cloudy Days. Meaning, we can go months without any significant spikes in characteristics commonly found with people on the spectrum and then one day I will notice that James is pacing (that’s how he stems) or he is having a hard time articulating his thoughts. When these “cloudy days” happen usually there is something that has lead up to it: over indulgence in processed foods, being overwhelmed at school, having a bad day at work, not feeling well or friend issues. I used to be able to anticipate these days because I was more in touch with what was happening at school or with friends but since James has started having more and more experiences that don’t include me, I am usually blindsided when his autism has spikes.
James is hyper aware of the stigmas that come with people’s lack of understanding of Autism as a spectrum and is sensitive to being treated like any other young person. So, I’ve tried to help him in any way I could. In some ways it has been a blessing that I was a very young woman when I had him. We share many of the same taste in music and pop culture and it’s not a stretch for me to understand his perspective on many things. Between my daughter (James’ younger sister) and I, we’ve become his social queue and societal support. My daughter specifically was great about breaking things down for James. And as he got older and learned behaviors became more automatic, James became a terrific social support to her too. They have a very special bond. In fact as I write this blog entry they are in the dining room cracking up over some YouTube video that they’re watching.
But over time, as it happens in every household with children, James has gotten older and includes me less and less in his decisions and requires more and more freedom. Freedom in his decision making and freedom physically from home.
You should know, I grew up in and around Los Angeles county in California. I’ve been around shaky situations and sketchy characters my entire life. I got a very normal 80’s baby city kid upbringing. But as a parent, I work really hard to raise my kids in cities with low crime rates and good schools. My kids have had very little exposure to all the danger that awaits them in the world. So the idea of my somewhat naïve 18 year old navigating around the city with his friends shook/shakes me to my core.
I’ve always been really honest with James about my concerns. And he is been great about navigating his new freedom with care. But like a boomerang coming back to it’s owner it appears that some of the heartache I dished my parents is coming back to haunt me.
Recently, I’ve been forced to wake up and think about the “support” I’ve been giving James up to this point.
- Was I helping him when I agreed to lesson my involvement with the local Autism resource groups?
- Was I helping him by not forcing him to socialize with other people on the spectrum?
- Have I been a helper to him by being in every nook and cranny of his life, so much so that he may have had to keep secrets to have privacy?
- Have I been the best mother to him without the tools of other ASD parents who have traveled this road before me?
- Have I given him too much control over how we will live as an ASD family?
I’ve lost a lot of sleep and consumed many a cocktail mulling over these questions in the last few weeks. I’ve searched the internet and reached out to support groups in other states and none of what I find seems to speak to where I am or the questions I have. James is capable of taking care of himself. But do I believe I’ll need to provide a moderate amount of support for possibly longer than most parents of newly launched young adults? Yes. I believe he’ll get to any place he wants to be in his timing. But I can’t help but feel like someone out there has launched a teen with HF ASD into adulthood and being able to pick their brain for a while would help me so much.
I’m going to start a new blog series on my page documenting this journey of launching James into adulthood. Maybe someone that is parenting a younger child similar to my James will find these entries and they’ll help them. Or maybe I’ll just write these entries to get all the concern running through my head out and on paper so I can sleep at night. I don’t know. I guess we’ll just have to see what happens.
*Life Thief is a “real life” lifestyle blogger with a sassy mouth and real woman and mother sensibilities.
You can find her other blog posts at: https://thestolenlifechronicles.wordpress.com/