Understanding reasons for later autism diagnosis

Having my eldest child, my son, diagnosed was easy. The way his autism presents is the stereotype of what first comes to mind of many professionals in the autism space. He was diagnosed close to his third birthday, and starting receiving specialist support soon thereafter.

It was a very different story with my daughter. I knew in my heart that my daughter was Autistic by 18 months old, but what first clued me in was not what most people think of as indicators of autism.

She didn’t babble, not at all, which is an indicator of autism, but what came after this was not typical. Up until 16 months, she hadn’t uttered a syllable, however understood everything including multipart instructions. All of a sudden she said her first ‘word’, “what’s that?” For about two weeks, that’s all she said. Then she started using small sentences. By 18 months, she could produce complex sentences and by the age of two she sounded like an adult with a tiny, toddler voice.

When she was just over one, she was enrolled in day care a few days a week. Almost immediately, it was flagged by her educator that she was a little different from the other babies. She would care for the other children like they were her babies and when she would give her educators a hug, she would pat their back as if to comfort them. I asked if this was not considered typical, and she said that she had never seen it and that she thought it was lovely, just unusual.

She was also so, so much like me. She was hyperlexic. She needed to know exactly what to expect in extreme detail when we went out. Loud sounds would hurt her. She would only contact nap. She preferred to be a ‘helper’ with a clearly defined role at preschool rather than engage in unstructured play. She would come home exhausted and overstimulated from pre-school. I flagged autism with pre-school and they insinuated I was being ridiculous. When she started school, I flagged this with her kindergarten teacher who sensed it was just ‘a little social anxiety’. Same story all the way through to the end of second grade, by which time we were dealing with school refusal and a complete unwillingness to listen by the school.

I had raised her knowing that she was likely Autistic and provided informal supports, but because she did not require occupational therapy or speech therapy, I had really wanted diagnosis to be something she wanted to do, I was holding off for a variety of reasons.

It was evident that school was disinterested in supporting her based on support needs and was requiring a formal diagnosis to give her the small adjustments she needed. She had also wanted a more definitive answer herself at this point, so we moved forward with a diagnosis. I was expecting this to be a struggle for the diagnostician to see, but was fortunate enough to go to professionals who had experience with Autistic girls. Following the assessment the diagnostician said that it was clear she was Autistic, ‘gifted’ and also likely an ADHDer (but not a formal assessment). Same as me.

I do wonder though if she hadn’t reminded me so much of myself, would the subtleties of her presentation have been written off by everyone around her as eccentricities or just being ‘difficult’ as was the case with me. My life was more difficult than was necessary, and my parents’ role was also harder than needed to be. Imagine if they had of known why I would melt down when they made changes to plans or going to the hairdresser. Imagine if they had known how to support me. Imagine if they knew I wasn’t a lazy student, just unsupported and they could have advocated for me. Would I have healthy self-esteem and good mental health? I would hypothesise so.