"There's nothing wrong with him."
"He doesn't 'look' autistic."
"He must be really high functioning", "You're so lucky, he's verbal", "That's totally normal behavior for all kids", "We never called it autism, we called it lack of discipline". I could go on and on, but you get the gist.
It is something that those who have children on the spectrum deal with daily. A lack of understanding that a child or adult can be brilliant, witty, funny, mobile, verbal, intuitive, seemingly functional......yet, disabled.
"Disabled" for so many correlates to something which is physical, obvious, apparent, and easily reconciled by obvious observation. Because my son seems "so smart" (which he is), many assume there can be no merit to him being disabled. Sadly, the majority of those who feel this way, are those closest to him. Family, friends, those we interact with daily. Should you try and explain the part of the spectrum which affects how information is processed, or how seemingly normal everyday interactions are misinterpreted, or how my son cannot make sense of your facial expressions or your tone of voice, or whether you are joking or being serious - it is easily dismissed, because, after all, "He's so smart. There's nothing wrong with him".
Our son celebrated his eighth birthday in September. He has been homeschooled until just a week ago. He has other medical conditions, which up until this year have made it impossible for him to have the stamina or general health to attend school. Through extensive medical care, surgery, extensive therapy and over a year of physical healing and progress, he finally expressed his interest in attending school. With that, of course, comes a whole new round of evaluations, testing, and the mother of all things which turns special needs mothers into full fledged "mama bears".....the IEP.
I've heard horror stories about the process of getting an IEP in place for your child. I was honestly dreading it. I had been told to be prepared to "go to battle" for my child. I was told many IEP's involve lawyers. This was all a first for me, so I prepared myself for the worst. Honestly, I had nothing to be concerned about. I am one of the lucky ones who lives in an area where autism and it's relative issues are respected by our school administrators. My son's core team of therapists, his service dog and my opinions of his needs were accepted and respected with open arms.
What I didn't expect from the IEP process, was the slap of reality on paper in my face. It honestly was nothing I didn't already know, however, it was there, spelled out in black and white.
After seeing what my son's struggles look like on paper, I first wanted to punch something, then cry in my closet for the struggles which my son endures daily, but which are so often minimized because "He doesn't 'look' or "act" autistic". I then found myself with this overwhelming urge to scream from the rooftops "YOU SEE?! DO YOU GET IT NOW?! DO YOU SEE HIS REALITY?!" I desperately wanted to shove his test results in the face of every single person who has ever minimized his struggles because "he seems completely normal to me", "at least he's verbal", "yeah, but he's so smart, you should be so grateful". I wanted to scream for my child "RECOGNIZE HIS STRUGGLE, not your own perception of the lack of validity of it, because he carries himself well enough for your social acceptance".
Guess what? My son's autism ISN'T ABOUT YOU or your thoughts, or opinions or acceptance or refusal of acceptance of his disability.
However, each and every time HE HEARS YOU dismiss those things which are a daily struggle he has worked so hard to overcome, you create yet another hurdle for him to endure.
You are teaching him that no matter how hard he tries, there are those who will never give him credit for how hard he's worked, and how can that feel to a little boy? How would any of us feel if we were in pain, or suffering our own battle, whether it be obvious or internal, if all we ever heard was "suck it up, there's nothing wrong with you"? I'm all about teaching my child that autism doesn't have power over his capabilities. I'm all about teaching him he can be all he can be.......but I will never accept him being demeaned, belittled, reduced, dismissed or scrutinized for the amount of effort it takes on a daily basis for him to continue to excel in a world which doesn't (and isn't obligated to) make his life a piece of cake.
My son doesn't 'look' autistic. My son is incredibly smart. My son also has struggles which you may never notice on the outside, unless he does something to offend you, or anger you, or cause you to question his parents. You will be oh so quick to make a determination as to why he is behaving the way he is, but chances are, you won't include the disability you cannot easily see. My son needs you to understand him, should you claim to love him.
He doesn't need judgment based on what you assume you know, because of what you perceive you see.