The ADHD and ASD dx Trend

 My kids have Autism Spectrum Disorder (ASD), and I have Attention Deficit Hyperactivity Disorder (ADHD). I am reasonably confident my husband and I also have ASD, but neither of us has been diagnosed (dx'ed). 

Let's break that down. 

My kids have this. We noticed the signs early and went to the appropriate professionals to find out. The reason we did this is that the supports needed to get them going and keep them on track need a diagnosis in order to start.  We knew that schools have a tricky system that frequently leans toward treating kids with designations like second-class citizens. We knew that there would be discrimination and exclusion. We did it anyway. Why? Because if we didn't, they would have been way further behind. If we didn't, they would be the ones who struggled, not us. We had to put our own bias and fear behind the needs of our children. YES, this is hard. YES, it's way easier to write it now than it was to do it years ago. Yes, we were in a situation where the social pressure was functionally neutral on the topic. We could pick the friends we wanted to share with, we could stop seeing ones that were less supportive if we needed to, and my family was almost entirely on board. His family needed a little convincing that having an assessment was not going to hurt the older child, but once they started seeing the huge and positive change, they had no problems. I know that's not the case for everyone. I know that social groups have a huge range of dynamics to navigate. I know that cultural or generational differences dictate how much support a family may or may not have. It is not easy to accomplish. We knew we had to, and we had the means, so we did it.

I have ADHD. I grew up in a weird situation with a family that didn't know much about it, and were embarrassed about their own experiences with school and medical systems that should have treated them better, should have supported them better. But that isn't what happened, and so rather than being empowered and taught to cope more effectively, they didn't know what to research, they didn't know how to deal with things, and maybe that's why they didn't realize when I was showing signs. Things are a bit better now. We are all still learning, but having grace and understanding for each other dramatically changes the relationship for the better.
I was told in my early 20's by a landlord that I should look into it. I then, in true ADHD form, forgot about it until I got married and wanted to go back to school, but was terrified. So, miraculously, I asked my doctor for a referral to an assessor, got it, and had a diagnosis and meds within 6 months. That doesn't happen anymore. The waitlist for things like that has grown substantially. 

The point is that I am diagnosed. I knew there was something up, so I went and had myself seen by a professional. I am also not a professional or expert on my diagnosis. I am a support worker; I have seen a lot of symptoms manifest in many ways for the students I have worked with. However, I am not a professional who has studied the development and brain activity around the disability. The things that I say need to be hedged appropriately. A person with a diagnosis is not necessarily an expert on the topic; they are an expert on their own self. But that doesn't make a person an expert on a disability. Equally, and more importantly, a person who suspects themselves of having a particular diagnosis is not an expert. 

When I make little jokes about "hearing the ABA" in how my kids talk sometimes, while I am speaking with love for my kids and how hard they have worked, it's with a bit of morbid comedic relief from sitting in on, or listening over the baby monitor to hours on hours of sessions in our home. We can't breeze over the significance of that: a service provider that is not part of our family or friend group routinely comes into our home to teach or tutor in some way, at least 3 times a week per kid. Even when we are at home, we don't get to relax like typical families, because someone else is usually there, too.
When I say "This one is a rock kid", it's because I have walked with pocketfulls of rocks back from the park, or been to a work function and could only find rocks in my bag when I needed a pen, or tripped over dozens on dozens of rocks in my house because my little one loves rocks so much. Grandma got a Nat Geo rock advent calendar for this kid for Christmas, that's how much we love rocks. I am not mad, I am not even annoyed about all the rocks, I think it's kinda neat, actually. I am using a bit of morbid comic relief because I need that little bit of humor. I know fixations are a thing. The fixations allow people to develop incredible knowledge on a subject, and allow some to make extremely rewarding careers out it the topic. Yes, I'm going to joke a little. I'm also going to be careful who I talk to so not to belittle, because the people I talk to should understand on some level what is happening in our home. I'm also going to say things about myself, for example, "in true ADHD form", because that is the world I live in, and that is a classic symptom according to my diagnosing doctor. I say things because I find them to be amusing, and/or they are very specific to my family or situation. As a diagnosed person, I feel it is only acceptable to make jokes about my own self or living situation, not about the community as a whole.

This is my word of warning borne out of mild frustration: Self-diagnosis is not a formal diagnosis. Social media content is not legitimate research. Jokes when you do not formally live in a community are less funny. There is also no way to verify the diagnosis, or lack of it, over a social media post. And there shouldn't be. That is personal and medical information. No one should disclose if they choose not to. But be cautious about taking someone's word for it. 

Comments