The Summer of 9: The ASD diagnosis
My kid is not unlike many other kids that are diagnosed in piecemeal fashion: first with ADHD, then Sensory Processing Disorder (SPD), and now Autism Spectrum Disorder (ASD). I affectionally call the timeline of his diagnoses: the Summer of (age) 5, the Summer of (age) 7, and the Summer of (age) 9.
My son has struggled from an early age emotionally, socially, and academically. His father died when he was 23 months old and grief seemed to be the obvious explanation for his puzzling behaviors at first. Grief in children can take on many forms and go on for many years. He was often misunderstood as misbehaving because he "looks" neurotypical, but as he grew, something was clearly amiss and I began seeking professional help.
His initial evaluation in the Summer of 5 uncovered that he had ADHD and I took several measures to help him manage it: exercise, therapy, tutor, outdoor time, nutritious foods, supplements, and so forth. I wrote about it here. Around the time my kid turned 7, he was informally "observed" for Aspergers which was shocking at first but he certainly had all the traits. While the therapist dismissed the possible diagnosis, I wasn't so sure. Then I read NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, by Steve Silberman. While the book's larger focus is on the hidden History of autism, I gained a broader understanding of it, and my intuition still was that my kid was indeed autistic. What I didn't expect was that, not only I saw my son in the book, but I also saw my brother. And then, the school year ended. Although there was a pattern of regression between grade years, in the Summer of 7 he was showing concerning signs of regression and referred to occupational therapy for an evaluation. As I wrote before, we found that he had retained primitive reflexes, sensory processing disorder, and later on visual perception problems were discovered as well. He was in OT for a year and a half, and I thought this was all he needed in addition to behavioral therapy and the strategies I've implemented.
Fast forward to ten months ago, I regret to say I was wrong. OT was wonderful for him but didn't resolve ALL the issues. By spring of this year, his social and emotional dysregulations were so severe that I seeked a new behavioral therapist and psychiatric help for him. So, in the Summer of 9, my son's psychiatric nurse recommended "a full psychiatric evaluation including autism and IQ". In August of this year, he was diagnosed with Autism Spectrum Disorder in addition to the previous Dx of ADHD-combined type.
I felt relieved and grateful.
Now that I fully understand what's really going on neurologically, I can better plan and support his strengths and needs in social and academic settings, as well as help him improve weaknesses. I also feel like I'm becoming a better parent, and we're getting along better. I use analogies about the things he likes to get through to him. This week I was able to give him a medicine by using metaphors about the army (his passion). I'm also learning to advocate for him in ways that I didn't feel possible before, thanks to a strong network of autism parents. I've initiated the IEP process at school (which I was always discouraged from pursuing in the past), and I'm researching possible therapies and programs, such as ABA therapy, that can help my son develop social skills. He also needs support during summers, because don't you know by now we hate summers?
Now, I just want to share a story that happened about a month ago. My son had a particularly difficult day and I was finally able to explain to him that he was autistic. He listened attentively as I explained that his brain was wired differently, not less. I talked about his visual-spatial strengths and about some weaknesses in communicating. He then asked me again at bedtime to explain what it all meant and I'm so grateful to have read NeuroTribes because I was able to share with him that there are many people wired just like him throughout History, that he's not alone, and also that: that's his tribe. He was so happy and I could tell he had a clear sense of belonging. I'm not totally sure he completely understands yet, but it's a work in progress.
Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!
11/14/2017 12:31:07 pm
Ah, the saga. Yes, it's very familiar and very exhausting...
11/14/2017 03:23:37 pm
Thank you for the love! :-) it's a long and winding road for sure, and so different for every family. I'm finding a whole new group of very driven ASD parents and the push for a different set of resources that I wasn't aware of. I can totally understand your burnout before, there's so much to wrap your head around. As for the book, I first listened to 18 hours of the audiobook from my local library. I own it now, but I think listening the History is easier. The ADHD in me has trouble with 500-page books ;-)
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I'm a single mom, graphic designer, crunchy mama, trekkie geek, life warrior. It's embarrassing how excited I get about food. I'm an expert in barefoot Lego fire walk.
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