How We Missed It

Builder Boy was about to turn 10 years old when he was officially identified/diagnosed as autistic (ASD1). Early Bird was almost 8 when he was (ASD1). We didn’t have a clue about either until Lady Bug was first identified as ASD3. Why did it take almost a decade for us to see it? How did we miss it?

Gifted Traits and Overexcitablities overlap with Autistic Traits

Early Bird started reading 6 weeks before his 3rd birthday. Not just memorizing a whole word here or there, but straight up phonics; he could sound out new words. By his 3rd birthday he had finished the kindergarten level of Hooked on Phonics and was working on 1st grade work. He read his birthday cards that birthday. There wasn’t any question that he was an accelerated learner. I panicked and started doing a lot of research. I learned a lot about what it means to be gifted, and how there is so much more to it than just being smart. Big emotions that may seem disproportional to the situation, sensory issues, rabbit trails of unique interests, difficulty relating to same age peers, all these and more come with being gifted. Siblings tend to be within 10 IQ points of each other, so I spent the next 4 years under the assumption that any quirk or issue that popped up with either of them was explained by giftedness and did not look further.

Homeschooling meant Individualized Education and Less Problems

If the boys had gone to public school, I have no doubt they would have had difficulties that would have led to an earlier referral for assessment. But we homeschool, which means an individual approach that works with the child’s strengths and accommodates for the child’s weaknesses. This leads to less frustrations and not really noticing “problems” that would lead to thinking that there might be something that needs addressing. Plus, I was accommodating with giftedness traits in mind, so it felt like everything had an explanation. Any social deficiencies I blamed myself for failing to arrange enough social opportunities.

My Kids Were Quirky, Just Like Me

I was identified as gifted in public school. But back then that didn’t mean anything beyond “you’re smart” and the possibility of extra enrichment classes that happened before school with no bus  support, so that didn’t really happen for me. Researching giftedness when Early Bird proved that the apple doesn’t fall far from the tree helped me understand for the first time what it meant for me, and explained a lot of things that I had struggled with growing up and into adulthood. Any other things that they struggled with, I struggled with too. So it didn’t seem out of the ordinary or that different. Turns out, I’m probably on the spectrum, too.

I didn’t know enough about Autism

Unless you’ve already immersed in the world of autism, you probably don’t know enough about it to recognize it. Often times autism doesn’t look like what the uninitiated would expect. Before it was ever brought up that my daughter might be on the spectrum, the most I really knew about autism was a facebook friend’s 2E (twice exceptional, meaning gifted and autistic or another exceptionality) son who was selectively mute. After we “came out” as an autism family on facebook, I was shocked to find out that quite a few of my facebook friend community had autistic kids; they just didn’t talk about it. Add to that that the majority of “Autism Awareness” things I had seen on social media focused on kids with more support needs, I really had no clue what what used to be known as Asperger’s really was. Even once I did learn about what autism is and that my sons were, I still questioned it at times. Interestingly, in the past year Builder Boy especially as he goes through puberty has exhibited more outward signs of stereotypical behavior. It’s not that he has become “more” autistic, but rather his behaviors have adapted to changes within himself and changes in outside expectations and greater stresses.

It took an outside observer to see it; and neurotypical people don’t want to hear “bad” news about their kids.

My friend babysat my kids for several hours so I could clean the house distraction free. When I went to pick them up, my friend asked me if I could talk for a moment. She told me that she had been randomly reading about the M-Chat, an autism checklist for toddlers, the night before, and with that fresh in her mind she had noticed some similarities with Lady Bug, and was it possible that she was autistic? That conversation is what led to a doctors’ appointment, referral, and eventual assessment. But what my friend didn’t tell me until almost 2 years later was that she had actually been suspecting it for a while, and had been researching autism for over a month before she said anything to me. I was hurt and confused by that; why wouldn’t she tell me as soon as possible so I could have been doing something about it? But my friend helped me understand that I don’t think or respond the way that every other person she knows does. The neurotypical response would be to get offended and hurt at the suggestion that something was “wrong” with their child. The neurotypical parent really doesn’t want to know. And we hadn’t been friends for long enough for her to realize that I wasn’t going to respond the same way every other one of her friends and acquaintances would. That is also why she didn’t mention all the signs she had been seeing and hearing about at AWANAS where she was Early Bird’s leader until the day she watched the boys all day while Lady Bug was assessed and issues climaxed and her husband banned Early Bird from their house for a while.

2E Attributes Canceling Each Other Out

The thing about twice exceptional is being gifted can help mask the other issues. After Builder Boy’s assessment and results, which included a pragmatic language disorder, I reached out to the local public school for help. In our state they are supposed to work with and help homeschoolers, and we had had a wonderful experience a few years earlier with speech therapy at a local school. Unfortunately, since that good experience we had moved houses; and districts. The new school, while agreeing that they had a legal obligation to test Builder Boy, denied any legal obligation to actually give him any help unless we enrolled full time. Since this was the school who had a Speech Language Pathologist slap a 7 year old autistic child in the face the previous year, I wasn’t about to fight with them to provide services, because I didn’t want it from them. But their testing showed….absolutely nothing. Despite obvious struggles with understanding/inferring meaning from both written and spoken language, they insisted that there was no problem, and if he were in their classroom he never would have been referred to them as needing help. If they were correct about that, then he’s one of those kids who would have slipped through the cracks. Struggling but smart enough to compensate enough to not be noticed and still on grade level. But they saw a kid who was already being accommodated and helped on an individual basis, and didn’t have a history of frustrations and overwhelm. So while homeschooling contributed to to a delayed identification, it really is for the best.

Why This Matters

In a facebook group recently I saw a parent posting about their child. Their child was in public school and being referred for an autism assessment. But upon learning about gifted overexcitiblities, the parent thought perhaps that covered all of it and should they cancel the assessment? I told them what happened with us, how we went so long not knowing because we too thought it explained everything, when it didn’t because we missed things. I urged them to have the assessment anyway, just in case. If you want to learn more about autism, and think it might be something to look into for your child, I have that information here on my Autism FAQ page. Learning that our boys are autistic has been an unexpected blessing. It has helped us understand them better and have much more appropriate expectations of them. No, that doesn’t mean I let them get away with everything or lower my standards and expect less of them. What it means is no, my kid isn’t a jerk, he’s socially clueless and that’s just something we need to work on explicitly rather than assuming he should pick it up on his own. It means expecting him to act like neurotypical peers without sensory supports is illogical and unhelpful. It means comparing to NT The Invisable Gifted Childage peers is harmful and should be avoided. It means “he should be able to do this by now” is ignorant and setting us up for disappointment and frustration. It means loving him for his whole self with full understanding of who he is.

This post has been my contribution to the Gifted Homeschoolers Forum’s The Invisible Gifted Child: Mislabeled, Misdiagnosed, Unidentified and Misunderstood blog hop. For more posts by some fantastic bloggers, click here.

5 thoughts on “How We Missed It

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  1. Excellent blog post! It can be very difficult with identifying autism. Hyperlexia, pragmatic language issues, sensory issues, and others can overlap with autism like a Venn diagram. Unless you have specialists who have observed your child over long periods of time, parents can be rudderless. It’s very easy for a child to slip through the cracks.

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  2. Thanks for sharing your story. Sadly, I hear so many parents do the same thing you described about using the gifted label or OEs as an explanation for concerns that really may be better assessed professionally. I’m glad you had a friend who cared enough about you and your children to help you discover a path that has led to help. We all need good friends like that.

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  3. Yes, we had this too. It wasn’t until I read Dr Ruthsatz’s research on the link between prodigy and Autism that I realised I needed my kids tested. (That was the 3rd Neuropsychological test for my son!) You are spot on. For me, OEs are now a ‘maybe we should look into this further’ rather than a reason to dismiss other options. It might just be giftedness … or it might not.

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  4. Love this! Sometimes it’s so hard to tease out the tangles of gifted, and especially of 2e. When you’re not exactly average yourself (::cough:: yup, me too) then it’s hard to label things as “not average” because for you – us – it’s our normal. I’m glad homeschooling is working so well for your family!

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