For about a week after Jack’s autism diagnosis, I rode a pretty strong tidal wave of emotion. I was expecting things to be more matter-of-fact; after all, I’ve known my kid for 12 years and a new label doesn’t change who he is. But while he hasn’t changed, my perception of him and what he needs from me is a bit in flux. And I’m finding that unnerving.
As cheesy as it sounds, the grief cycle describes what I’ve been going through rather well (even though I know it’s not as straight forward as what Kubler-Ross once posited). Anyone who has gone through grief knows it isn’t a linear process, and this has been no different. On any given day I’ve bounced between the “stages” and often I’ve felt multiple things at once.
A day or two after we received the diagnosis, I obsessively worried that the medical staff had gotten it wrong somehow. Never mind that I had seen the signs throughout Jack’s life and had requested the evaluation for good reason – an anxious mind doesn’t pay attention to stuff like that. Instead my mind picked everything apart, examining the evaluation and diagnosis for any possible weaknesses.
I worried that the day of the evaluation was just an off day for Jack. Perhaps he wasn’t his usual self and just exhibited more symptoms than he might have on a more normal day. Maybe he didn’t make eye contact because he didn’t know the evaluators. Maybe the flat affect was actually depression or fatigue. Maybe the evaluators were pre-disposed to confirming autism.
Before we went to the evaluation appointment, I had thought a Sensory Processing Disorder diagnosis was most likely. Those symptoms I saw clearly. But autism? How? How had been overlooked for 12 years?
I’ve been coping with the flurry of questions rushing through my brain by frantically googling and reading all kinds of stories and articles about autism. I also joined several Facebook groups for autism parents. Reading research articles and blog posts from other parents and people with autism is a great reminder of the signs we see regularly in Jack. Article after article demonstrated to me how this diagnosis “fits.”
Whether it fits or not, there is still anger. A lot of my anger has been directed at various professionals that missed the signs. Jack is no stranger to the medical system; he has seen a steady stream of highly specialized medical professionals since he was 5 years old! HOW did all of those doctors and therapists miss this? It’s their JOB to notice things like this!
When Jack had so much trouble communicating with his oncologist about what he was feeling, describing his symptoms in odd, abstract ways, why didn’t that tip anyone off?
How did his therapists overlook the lack of eye contact, the flat affect, the overwhelming discomfort when talking about emotions, and the sensory-seeking behaviors? I have asked about various behaviors over the years and was told that it would likely go away on its own or “that’s just Jack being Jack.”
Except it wasn’t just Jack being Jack and the behaviors didn’t go away (although some morphed). And if these doctors and therapists had taken me more seriously, we could have gotten this identified earlier. Maybe if we had gotten a diagnosis earlier in Jack’s life, early intervention programs would have made a different in his levels of anxiety and depression and how he feels about school.
I think I’ll be dealing with anger for a long time. I feel like Jack’s doctors let us down.
Am I lucky that I don’t seem to be dealing with this one? Or will it come at a later date? Is it even possible to have a bargaining stage when you don’t believe in a higher power?
This probably doesn’t need any explanation; depression seems to be my natural state. Why would this be any different? Malaise and anxiety seem to be particularly strong for me when Jack is away at his dad’s. The same thing happened when he was diagnosed with Leukemia: I needed to see him to reassure myself that I wasn’t losing him to something I couldn’t physically see. (Maybe a bit of my current depression is due to the memories of that time. Intellectually I know it’s a completely different diagnosis and treatment trajectory, but the mama bear in me doesn’t seem to get it.) I worry about his future and the challenges he’s likely to face, both socially and health-wise, and my powerlessness to spare him from those challenges makes me really fucking sad.
I also feel overwhelmed by responsibility. There will likely be changes to Jack’s IEP, and being a good IEP advocate is exhausting! I will need to do more research to figure out what types of goals and accommodations make sense given the diagnosis and that feels like a big task.
Then there’s the therapy to schedule and attend. We’re already managing mental health conditions; soon we’ll have to manage behavioral therapy, too. The pediatric mental health center is located 20+ minutes south of us, and the behavioral health facility is located 20-40 minutes to the northeast. (Oh, and we still head to the oncology clinic every few months; that’s 20+ minutes north.) Juggling all of these appointments outside of school hours is a real challenge!
Feeling overwhelmed and powerless is a direct ticket to Depression Land for me. This is definitely the hardest part of this process.
Tucked in and around all of the above stages, there is acceptance. I accept this diagnosis and I accept my child’s unique experience. Jack is an amazing kid, and this is just one piece of who he is.
Along with the acceptance has come an understanding of how I’ve adapted to Jack’s quirks. Joining the autism parent community has given me an opportunity to hear from other parents who are either doing the same things we’ve been doing for years or looking for advice that I can actually give! I wish I had known sooner that answers were out there, but I am also happy to get reassurance that I did so much RIGHT without knowing why.
There is also some relief sprinkled in. I thought there was something there that we hadn’t identified, and it turns out I was right. There are tools to help Jack in some of the areas where he struggles, and we’ll receive guidance in those areas. That is going to be very helpful, and I’m grateful that we will have access to those tools now.
From what I understand, all of the above is totally within the realm of a “normal” emotional response to an autism diagnosis (or another big deal diagnosis). I am trying to be patient with myself and remember that I can’t rush through emotional processing no matter how hard I try.
Everything will be okay; it just takes time and patience.