As a therapist, I am faced with parents struggling to understand what is wrong with their child everyday. Why is he having such extreme tantrums? Why won’t she talk to other kids? Why doesn’t he fit in like his sibling? I get it, I have asked many of the same questions about Jessica. But some things are not obvious right away. It took until Jessica was 19-years-old before we had a solid diagnosis. The behaviors that she presented as a child were easy to normalize as “That’s just Jessy…” And that was a true statement. When kids are young, they are trying new things out, like how to make their own wardrobe choices (sometimes every color in the rainbow for the same ensemble is how they feel that day…not everything has to match, etc.). As I look back, I can see things now that I normalized back then, but they weren’t extreme things, they weren’t things that were getting in her way of being successful at home, or school, so why would I consider that anything was wrong? And I certainly would never have considered ASD. She was atypical, there were no concrete markers for this. She didn’t have a speech delay (in fact she hit that milestone on the earlier side of the curve). She interacted with her peers appropriately all the way through first grade. The only issue the school brought up to us after that was that she played by herself a lot on the playground (in her own world), but her interactions at home with her brother were very normal. She was less mature socially and this was what stuck out for me for many years to come ( but again, not from a diagnostic place…kids mature at different rates). At some point it became more obvious that she was consistently 4-5 years behind socially, this eventually got in her way of making and keeping peer relationships (I will speak more to that later).
When she was about nine-years-old (the start of those TWEEN years) Jessica would start to have these melt downs. At first they seemed to come out of no where, but she would lose it. She would just start yelling and crying about things that had happened that she was bothered by for the past two weeks to two years. They would last sometimes 45 minutes and when she was done, she would just fall into my lap and sob. Then it would be over and we were good for another month. This went one for almost a year, before I started to consider the timing of these melt downs. When I started tracking it (and I highly recommend tracking behaviors for anything you can’t quite put your finger on, because patterns do emerge), she was having her melt downs within the same week of my menstrual cycle, consistently. She was cycling with me, though she had not yet started her menses! It was at that moment that I realized how important hormones are in young girls ( that realization for boys came later…this one is for you Josh 😉 ).
So now I had a 10 year old girl whose social development was 4-5 year behind her peers and she was having melt downs monthly. The continued unknown was why is she holding on to things from two weeks to two years and then spilling all of that out each month? None of the things she would be upset about were new issues. They were arguments she had had with her brother (but had been resolved long ago), they were perceptions she held about her position in the family, and then there were issues such as her feeling alone, not having any friends, etc. all built up and then exploding each month. And it was not like the melt down resolved anything, because these were the same issues each time. She was not able to let go of things past and resolved and the friends issue was a constant struggle of loneliness that would come and go because over the years she did have moments of friendship. This inability to let go of things also went hand in hand with what I would later come to identify as a delay in processing.
In 4th grade (around age 9/10) we had Jessica tested by a then colleague of mine. She was having trouble writing a coherent paragraph and the teachers kept telling me it was a reading comprehension problem. I argued strongly that it was not. Jessica was a great reader and if you asked about what she read, she was spot on with what she read, she could verbally describe the story, the characters, etc. This testing identified a visual processing disorder. As it was explained to me, the information Jessica takes in visually gets mixed up in her brain as she tries to put it on paper in an organized manner. A more simple explanation: Jessica knows what a horse looks like, she can describe that in detail, but when given a simple block puzzle of a horse, she is unable to organize the pieces to put the picture of a horse together. Her verbal skills are high so she can organize and recite a well organized paragraph with her eyes closed, but putting pen to paper requires alternative areas of the brain that were not yet developed (4-5 year delay). No matter how many different tools she was given to organize a paragraph (graphic organizers), she struggled. As she got older, her writing greatly improved. That is the thing with this developmental delay…it is just that, a delay. By the time she graduated High School, her writing was much improved…not college level, but improved to the point that she could stay organized with just a couple of topics in a paper.
I am building a list of markers that led me to this ASD diagnosis. But it clearly will not be completed in this one post. Along the way there are areas I would like to spend more time on, such as this visual processing piece. So come back and read more because that is the topic for next time. Thanks for reading my blog!
Being Jessica's Mom: Growing up on the Autistic Spectrum 