We got the confirmation today through CDRC (Oregon Health Sciences University Hospital's Autism "experts" and child development branch here in Eugene) supporting the diagnosis we received from the school psychologist of Autism and confirmation of qualification for an IEP for Frog a couple weeks ago. After the school's confirmation I instantly messaged my cousin Pam and my friend Annie who, though far away, have been my rocks and advisors through so much. They know the struggles in different ways, because every child... neurotypical or neurodivergent, on the spectrum or not, is unique. Pam and Annie both congratulated us and encouraged me... Pam with a "yeah! I always say it's what Megan has not who she is" and Annie with a "Celebrate! the title means nothing and the door opening means everything!" They knew. They knew for me this was not bad news. Frog asked me "mom, is this good news?" and I said "what do YOU think?" and Frog said, "I think it is, I feel validated. I don't feel crazy." What I didn't tell Frog is that when I heard, I cried. I cried IN RELIEF, on the way home after they confirmed ASD. You read that right. Happy tears.
It's been a long road, with lots of twists and turns... and yet I've always known the destination. I've known it since Frog was tiny. From the time a little toddler freaked out in Walmart because they could hear the buzzing of the fluorescent lights above everything else, or a 4 year-old wannabe gymnast who was afraid to be tipped upside down and who stood out because they toe-walked and jumped around when all the other kids were standing in their circle or walking on the beams, or a 1st grader who crawled under the table and plugged their ears because the laughter of their classmates was too loud. I knew.
But I didn't. I trusted the experts, kind of. I mean, I did have Frog evaluated 3 times. Because of the toe-walking and slow potty training and tantrums and because they vomited up everything they ate. And so it was Sensory Processing Disorder. And then because of the "stimming" (repetitive behavior), and the ear plugging and "check-in/check-out" program at school for behaviors and the trouble fitting in. And a 3rd time I asked the school because a 504 for Sensory Processing Disorder and ADHD didn't seem enough. Each time it came back the same. No Frog is not on the spectrum, no Frog doesn't need more than a few accommodations, they're just being stubborn and they probably have Oppositional Defiance Disorder. Frog knew better, they told us, Frog just needed some guard rails to help with behavior.
But as Frog went through middle school and puberty hit and social constructs got harder and more nuanced, THEY asked this time. I'll never forget it. "Mom!" Frog said, "this is me! Read this. Mom are you sure I'm not autistic?" Frog showed me how AFAB (Assigned Female at Birth... Frog is nonbinary and doesn't feel they have a gender) kids are often late-diagnosed. Especially very high-functioning spectrum kids. They mask the symptoms better, they imitate social behaviors better, not until puberty and social interaction becomes more complex, does it become more obvious. But Frog showed me the "tipoffs", the common signs missed or misdiagnosed, the behaviors and the struggles. Frog wasn't wrong. It literally described my youngest. It WAS Frog. At first I resisted. Tired of the doctors running us through a battery of questions and tests to be told it's Sensory Processing Disorder, told they have Opposition Defiance Disorder, told some more Occupational Therapy and vision therapy and counseling will help. Adderall for the ADHD. Help them become more self organized. It will all be fine. But Frog pushed. Good for Frog. They advocated for themselves... they don't do this often.
So Mike and I tried again... we went to the doctor and back to CDRC and back to the school... In MARCH OF LAST YEAR. Finally in November, we had one more evaluation. Well 2, one at the school and one at CDRC on Friday. The psychologist seemed almost apologetic, the school one, that is. As we walked through the questionnaires, and Frog's interview and observations from the psychologist and the Speech and Language Pathologist, and the teacher's comments, and ticked off more and more boxes she expressed some surprise that no diagnosis for ASD had ever been given. There's a scoring system on these evaluations and questionnaires. Over 10 shows that a person is on the Spectrum. Frog scored an 18.5.
Mike forwarded me today the doctor's opinion from CDRC. They are in agreement. All of them. Frog has more than enough markers of ASD. Frog would benefit from an IEP. Frog will benefit from remaining in General Education, but with special support from the resource room 90 minutes a month, possibly a quieter place to do some work, longer time to process instruction because Frog's IQ is high, but processing speed is low, Adaptive PE might help and some Physical Therapy for the toe walking. More to come on all of this. More supports and resources to help them use their high IQ and succeed, but with the tools they need for the pieces of this world they don't get or don't fit into. They tell us there will be more as the IEP gets built out. There will be more as the "academics" get addressed, because first were the "pragmatics" (ie. social skills... understanding non-verbal cues, conversing attentively and appropriately, advocating for themselves).
I know will be a lot of "I'm sorry" or "oh no!" coming our way. I know, because I've gotten some already. Fear that that means Frog won't succeed or is "Special Ed." They don't understand. They don't realize that the label means nothing to me, nothing to Frog, except validation and a door open to resources to help Frog. Frog has become increasingly frustrated at their inability to keep friends, to converse easily, to be amongst people, to handle noises like kids chewing gum or tapping pencils. For Frog they're not minor annoyances, but like needles on their skin. I get it. I have some of the same sensory issues. So many of those kinds of noises literally HURT me. I and Frog can hear people chewing when no one else can. Frog has become increasingly frustrated at being the "trouble" in class because they can't focus or can't sit still, because they can't process verbal information well as quickly as the others. Frog is frustrated at hating group work because while complex math is easy for Frog, conversing with others is not. Frog has a great sense of humor about it. When they lost all their friends right before 8th grade, after being very heartbroken, Frog said, "guess they couldn't handle the 'tism' Mom." When I asked what they meant, they said "Autism, Mom, I think I have Autism."
If you read this, celebrate with us. Be relieved with us. Feel validated with us. Because now we have yet another adventure, another amazing mountain to climb. We have the chance to find Frog's Super Powers. To have resources to help Frog understand how they might grasp friendships, or social interactions, what tools they can use to succeed in a world that still fears the neurodivergent and calls them 'weird' or worse. Years ago, I wrote a blog about Frog, back when they went by Lizzy. About how they struggled and yet had overcome so much. How they had lifted their head high, walking into the school they feared and said they could DO IT. I said they would be Super Lizzy.
I've watched them make new friends after being crushed by the former friends who, understandably, couldn't connect with Frog because they've not yet learned to connect or maintain friendships and zone out on their phone often just to cope. I've watched them advocate to be tested again. I've had them brave enough to stand up to me and say "mom, you aren't LISTENING, you don't understand what I'm trying to tell you." I've seen them remind me that while they may be gifted like their brother, there is so much that's easy for William that will never be easy for Frog. They are both so amazing in their own way, but I also know that it's been hard on William to have a sister that might need us more and it's been hard on Frog to have a brother who is the apple of every teacher's eye. So I'm excited for Frog to get to forge this road with help. I'm relieved to have more resources for them. I know there is so much they can do, they just have a different path to the "doing"... like headphones, or quieter rooms, less social jobs some day and resources to handle college some day. They'll fly. I know it.
They won't be Super Lizzy though.
They will be Super Frog. And that's just perfect.
