Ruled out: oppositional defiant disorder, hearing impairment, conduct disorder, vitamin deficiencies, FASD, intellectual disability, specific learning disability, dyslexia, hypothyroidism
Misdiagnosis, or old diagnoses that could have been right but were not: ADHD, bipolar disorder, mood disorder – NOS, mental disorder (what does that even mean?), disruptive mood dysregulation disorder
Diagnosis that he has almost left behind: disinhibited social engagement disorder (formerly known as RAD)
Current list: PTSD, autism spectrum disorder, anxiety disorder, speech-language impairment, sensory integration disorder (I think the last 3 are sort of “duh!” with the first two), and probable dysgraphia
WHAT A MESS, and wow, so far from science it sometimes seems. When we first got the autism diagnosis, just a couple weeks ago, it felt weird. It felt awkward, after so many misdiagnoses, to now say, “my son has autism.” I think any new diagnosis will feel weird. There have been so many errors, and it’s hard to believe that this won’t also turn into an error. It might.
Still, it’s what we have for now, and it is slowly turning into a relief. There is space in our relationship as things begin to make sense, things that didn’t quite click as long as we solely viewed his strengths and difficulties through the lenses of child, trauma, mental illness. For example, when we call his name, he does not respond over 90% of the time. Those with no understanding originally saw him as oppositional and defiant. When viewed through a trauma lens, we saw it as part of the anxiety and fight-flight-freeze response. This is still true. PTSD and trauma are still intensely parts of how his brain works. We have learned, though, that it is more complicated than that. He has difficulty with attention shifting, with multi-tasking & attending to more than one sensory information source simultaneously, with delayed processing, with the pragmatics of how and when to respond. Knowing that, learning that is a relief. It creates space and relaxation in our relationship as I see him and his abilities more clearly.
There are lots of things like that we have noticed over the past few months, as the possibility of the diagnosis became more and more clear — his eye for detail, associational thinking, difficulty generalizing concepts, literal understanding of language, difficulty with multiple step directions, difficulty with conversation, with social rules, and oh the sensory things!
The sad thing to me is that these aren’t new traits. Some of them I noticed a year ago. He was almost diagnosed with autism three years ago. However, once a child has been in foster care, that’s ALL anyone can see. He was labeled bad, then ADHD, then a whole host of other things. People assumed he was doing it on purpose. Then we came along, and we focused on the trauma, before looking at anything else. I don’t know that there was any other way to do it by then.
Now we know, though, that he is a complex child. His labels may change, but we are learning to seek out his individual profile of strengths and challenges in a way that even we missed before. I can only see good things coming from that.