I don’t remember when I was first urged to be more social with other children. I know it was already a common occurrence by the time I was a pre-schooler.
I was about five when my parents first took me to a child psychologist. I had some “behavioral issues” that needed addressing. From what I remember, it had a lot to do with my lack of understanding of appropriate behavior/manners and my “moodiness” (meltdowns). The same year, I first saw a speech therapist. It was also the year my relatives started making fun of the way I moved – I shouldn’t flap my arms, it makes me look like a r*****. I shouldn’t run “like that,” I look like a s***. And so on. This was the year I started to feel like I didn’t fit in.
I was six or seven (I don’t remember for sure), when my parents brought it up to her that I was not like my sister. That I couldn’t seem to make friends, that I seemed to have no interest in other kids, that I never wanted to have other kids over, that I could spend hours and hours reading but got tired and retreated from a play date after about thirty minutes, leaving my sister to entertain my guest. This was the year the bullying started in earnest.
I first figured out that I was different from my peers. And since different = wrong in this society, I first thought there was something wrong with me that year. My parents denied it fiercely. “There’s nothing wrong with you.” “You’re the same as anyone else.” Etc.
But, I knew they were wrong. And that they were lying to me. I may be too oblivious to pick up on sarcasm or jokes a lot of the time (this morning, for example, when I found the laundry bag under a blanket, he quipped, “Darn, my attempt at hiding it from you is foiled!” and I stared blankly and said, “Huh? Why?”), but even I could pick up that most kids didn’t prefer books to people or get bullied like me. I was weirdo. Freak. Stupid. Other kids didn’t get called that.
All that not knowing whether or not I had a diagnosis did to me was make me doubt my own reality and feel worse about myself. Adults around me insisted fiercely that things weren’t harder for me than everyone else – so if it was this hard for everyone else, why did I fuck up so much? Maybe they were right that I was stupid/lazy/insert adjective here.
Refusing to tell your kid of their diagnosis does not make their difficulties go away. It does not magically make them “same” as their peers. It does not magically make peers willing to accept them or make their teachers not label them as a bad kid if their disability causes behavioral issues.
What refusing to tell your kid of their diagnosis does is deny them the gift of knowing why things that are hard for them are hard. It denies them the gift of knowing that their reality is valid, even if it’s not the way others experience the world. And denies them the ability to have greater self-knowledge, to understand their strengths and weaknesses better. If there is no apparent reason why things are hard for you, and adults in fact actively deny that there’s a reason things are hard for you, what that does is make you feel like it’s your fault things are hard. Something is wrong with you. After all, there’s “no reason” you should find X hard, so maybe you are just lazy or an asshole or what have you.
And, when they finally do figure it out (and they will, eventually), what it does is teach them shame. Their difficulties are so horrible and bad that they couldn’t even be told about them. The disability is something that has to be hidden away, as a shameful secret, like bribery or corruption. And it teaches them that their parents can’t be trusted – after all, you lied to them about who they are. What else will you lie about?
So tell your kids they’re autistic. It’s important.
Note: Chavisory has a similar post that is good and should also be required reading on this point.