Have you ever wondered when to tell your child about their autism?
Sometimes parents have a choice about when to tell the kids about their disability or disorder. Other times, it’s really obvious. If they’re in a wheelchair that’s not something you can hide; or anything else like that for that matter. But when it comes to some neurological disorders, that’s really easy to hide. It’s not just autism obviously, but ADHD, OCD, you name it.
My experience not knowing…
I grew up without any official diagnosis of anything. I was always just a quirky kid. Some people love me for it, others were frustrated by it. I’m betting it depended more on the moment than the person. I always struggled with friendships and life in general and it was devastating at times.
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As an adult, I was diagnosed with ADHD. I was about 19, and my therapist took an entire year to decide what disorder I had (although I would never have guessed I had any disorder…) and even then she was hesitant. She hemmed and hawed over telling me. According to her, she knew immediately upon our first session it was one of two things. She never told me what the other “thing” was. She simply told me that it was very similar to ADHD and sometimes hard to distinguish between the two. I hadn’t thought to ask her what the other was (and she certainly didn’t volunteer it). I was busy fighting against being labeled ADHD. She gave me a book, chuckling as she asked me to finish reading as much as I could and let me know if I still felt she was wrong.
Not big on reading? Here’s a video with the gist of it!
That’s when my world changed
I read the book, to prove her wrong, and she was so incredibly right. I felt and did everything in that book. Page by page, I read my own life story written by a complete stranger. I struggled to believe that there were people that didn’t feel this way. I read passages to friends, family, acquaintances. “Do you not feel that way? Do you not think like that?” Dumbfounded looks accompanied every, “No……”
Now I know that’s called mind-blindness. I was mind-blind to a degree my whole life and never knew it. Floods of memories rushed in as I read my book. So many sad moments in my life suddenly made sense. It’s like knowing I was different, and how, was the missing pair of glasses I’d been looking for all my life. Everything became focused and clear. I no longer wondered why everyone else seemed to do life fine, while I was flailing and struggling.
Then the paranoia set in
Once I started working with my therapist more on realizing I was not fully seeing things from others’ sides, not seeing what they saw, I was so paranoid. I started re-living every situation that led up to a fight, lost a friend. I began to see where a lot of it was me and my unwitting insensitivity or “weird behaviors”. Escaping the playback loop is hard. It’s still a struggle sometimes.
I learned to manage with her help, but now I am painfully aware, and always second guessing myself and watching my every move at social events. It’s an exhausting chore. Sometimes I wish I had never found out. I’ve had almost 15 years mulling it over.
Why I think It’s important to know early
Going on as I was, spending money beyond impulsively, ruining relationships, failing college classes, having frequent panic attacks…. it was no way to live. I realize ignorance wasn’t bliss. Knowing is massively important.
Finding out so late, however, that was the problem. It made me question my whole life. It gave me no time to actively practice these skills as a child, to make it part of my normal.
My parents had no clue I had any kind of disordered thinking. I can tell you, as an adult, if they had I’d have been furious about not knowing sooner. Knowing that you aren’t just a failure, that there’s a reason for your struggles is a huge weight off. Skipping the paranoia is too, of course. If you haven’t shared with your kids their diagnosis, it may be a huge gift to them.
Now that I have my son with Autism
I’ve learned more about high functioning autism. Looking back, I’ve got a feeling Aspergers was the other diagnosis my therapist was considering. I also believe I’m actually on the spectrum mildly, and that’s why she was so torn. Honestly, I can go into a whole other post on Autism vs. ADHD. If I had to pick one thing, my money would be on Autism.
I’ve never sought an official diagnosis but I talked to a therapist I saw briefly a few years back. He agreed the lines are really blurry between the two. Any which way, ADHD, Autism, or both, I think knowing at a younger age would have positively impacted my life in a profound way.
To sum it up
I’ve got four main reasons I urge you to tell your child about their diagnosis ASAP. A couple points are interwoven throughout my story up there, but here they are a bit more clearly for you to consider as they apply to you (and there are a couple that didn’t apply in my situation since I was diagnosed so late).
- Knowing early on in life can reduce the paranoia your child may otherwise experience as a teen or adult. It normalizes it in their world.
- Kowing at a young age gives them more time to openly practice.
- It minimizes breaking trust. I’m guessing you know firsthand how strong a sense of justice to which people with Autism are pre-disposed. They may possibly feel betrayed to find out they weren’t kept in the loop.
- It de-stigmatizes the disorder. If you spend their entire childhood hiding it, when they do find out, it’s going to likely feel like a dirty secret. Like it’s hidden for good reason. They must then decide whether to continue hiding it or work through possible feelings of shame.
Your Turn: Have you shared your child’s diagnosis with them? Why or why not?
Related books to help you on your journey:
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