The Invisible Disability

As you well know, my son Trey has autism, which has been an uphill battle since he was a toddler. I think the most challenging times were between the age of 2-6, until he became verbal at age 6. Language gave him the ability to get his needs met and be able to communicate with the outside world. This helped with his behavioral issues and reducing his angry outbursts. With age comes maturity and now that we are at age 10, I am starting to see his disability become less apparent to the outside world. Then it hit me like a ton of bricks. We are at the critical point, where he has now slipped into the “invisible disability” realm.

What is an “invisible disability” might you ask? That is when it is hard for a stranger to see that a child has a disability such as autism because they “appear normal.” Until they don’t. Until they exhibit some sort of odd behavior. Then you get the weird looks from others like “What’s wrong with your child” and “Why are they acting like that?” Before when Trey’s autism showed up more, people would generally look away for fear of appearing like they were staring and not wanting to seem rude. You got a general feeling from others that they understood your child had something wrong with them and they were trying not to embarrass us and be understanding. Now when we are in public and we are keeping a close eye on Trey by doing things like holding his hand or keeping him in close proximity at all times, we get the weird looks from people. I’m sure people probably feel like we are being overbearing and not giving him the independence, they think he needs. Not recognizing that if we really gave him that freedom, Trey would land himself into hot water. Trey needs that kind of constant supervision and by offering him that, we prevent situations from going wrong. Trey is at the age where we can go out in public and not have an ‘incident’ happen every time. We now enjoy going out with him and this finally gives his little brother the chance to have a normal childhood by being able to go out and do things he loves.

But here’s the thing. When you have a child that has high functioning autism or their development is progressing where their autism is becoming less apparent, this comes with its own host of problems. One major one is that people forget they are autistic. You have the child in the classroom who no one wants to play with because he says some weird things or has other socially awkward behaviors and feels isolated because he is not on par with his peers. Then, you have the acting out behaviors because the child does not fit in. Or, you may have the implosion where the child becomes depressed or feels hopeless because even to an autistic child, social connectedness is important. I used to hear parents complaining about the struggles of having a high functioning autistic child and would feel jealous. Like seriously? You have a child that appears normal, what is your problem? And now, I see. Sometimes, it takes being in that person’s shoes to really empathize with their struggle. I am now thinking about what I am going to do when Trey becomes a teenager, and he encounters the police, and they don’t understand that he is autistic, so they take something he does the wrong way. Trey may come off as someone who doesn’t want to comply, and you know what happens to young black men who don’t comply with the police. These are the things I now think about and the concerns I have. It’s almost as if I got to make sure that Trey is fully verbal and able to integrate with society in order to prevent things like that from happening. Which is fighting against his disability, which is not something I can or should do. I also can’t have someone with Trey 24/7 if he is unable to integrate successfully, so I really don’t have the answers for protecting him outside of just hoping he NEVER has to face that kind of situation.
 
When you have a child with a disability, it’s just very hard. There is no EASY stage. It’s just a new challenge you have to face. You are always on your toes and have to be creative every step of the way. I hope God didn’t bring me this far to leave me now. I hope that when Trey gets older that he can navigate life in a way that brings him joy and meaning. I hope Trey will be always protected by something or someone at every moment of his life, so he never gets mistreated. I hope the same for all special needs children that their parents can rest easy knowing that their children are safe when they are not with them. I hope that…but I know this is also not an easy task.

Love and light,

Kira