Being a child on the side of the Autism Spectrum that functions more through social settings and intense therapy, means often people think your disability or struggles are nonexistent when you are coping and functioning well. When they aren’t functioning well, people will look at that child and assume the worst. Parents get judged by uniformed strangers who don’t hide their opinions.
When the child is functioning, sometimes, fighting for what you need is the only way to maintain your resources because the visual reminders of the situation are hidden. Sometimes the assumption is that those resources are hindering the person on the spectrum, or being used as a crutch. Does having and using those resources make them less than their peers? Or does it mean we are holding them back for offering them those resources?
When you are dealing with a child or person on the spectrum like Em, they can function well for a moment, a week, a month, or even several months. Yet there are times she shuts down and it’s obvious she is in need of assistance. Whether Em will or will not need those resources doesn’t mean eliminating them and that we shouldn’t continue to educate those around us of what it means for her to have Autism, or to remind them she DOES have it. She’s not going to outgrow it. And maybe more often than not she will function at the same coping level as her peers, but that can change in a blink of an eye.
Here she is a stimming, loving girl who shouldn’t be ashamed to admit when she struggles. She shouldn’t feel like she has to wear the weight of society’s expectations to fit in. Things that look like nervous tics are probably more. I’ve found that more often than not, they are stims that she uses to cope with her excess emotional or sensory overload. She can become a quirky stimming emotionally charged mess in a flash. And I love her when she does, even if she doesn’t realize it.
So do I hold her back by protecting AND empowering her? Do I end up doing more damage while I think I’m helping her? That is where every parent’s dilemma lies. Where is that line? I tread a fine line. When she wants to change things up, I allow her to. Yet, I still make sure there is a safety net in place. Sometimes she knows it’s there but I’m finding as she gets older, the less she knows the happier the world is.
I push her to step outside of her comfort zone. I challenge her to set goals and work towards them. We don’t use Autism as an excuse and when it comes to an explanation, it’s about why she has a situation she is dealing with. There are consequences and she doesn’t get a “free pass” because of her Autism.
So when someone tells me that we are making her life harder, that we are responsible for holding her back, I have to wonder what that means.
By the choices we make in creating a safety net? I disagree that is holding them back. I think it’s a proactive stance to catch them when and if they fall.
Does it mean that we are assuming she is incapable? I disagree. As often as I can, I do not hold her back thinking she is incapable. I know full well Em is capable of many things, some I would never have dreamed of. But I push her to TRY if it interests her.
Does it mean not allowing them the opportunity to be outside a “box”? I’ve been the one to empower Em all along. She does get a lot more say than it seems.
Or does it mean to protect them from themselves? They can’t grow if they are sheltered and protected and can’t learn from mistakes.
Safety nets protect them from imminent danger, but still allow them to fall.
Autism doesn’t define them. How we treat them does. Whether we want it to or not.