This is a post that I have physically began to compose, but have deleted a couple times over the years. In my head I've written it over, and over thousands of times, each time composing it with a little more understanding, but not enough courage, or possibly enough knowledge yet to feel competent to write about it, maybe? I'm not sure. I am sure to get some of it wrong, but what I am sure about is the time I've spent thinking, and knowing my [autistic] brain, and understanding both of my sons, as well as being around others in the autism community has led me to where I am. I think I will get more right then I will get wrong.
So, what is this tumultuous topic that I tread so delicately to address?
Intellectual disability, and Autism; or rather where they intersect.
It's a very taboo topic to even broach within the autism community. If one were to even hint that their child might have an intellectual disability, plus autism to another parent whether this be in person, or online this is almost akin to saying, "I would like to start a fight with you." Never mind that this other person may never even have met the first person's child. All they heard was the words autistic (or autism), and intellectually disabled used in a sentence together, and that's enough to begin a verbal onslaught of angry facts, as if the other person insulted every autistic person under the sun by what they just said.
That in, and of itself is ableist. Let me explain why.
First, let's examine why this bothers people so much.
Some people say that it dismisses the person's abilities prematurely because the autistic person cannot express them in a verbal, or otherwise demonstrative manner that others can see leading to infantilizing an autistic person. This does happen. As a matter of fact, it happened a lot in the past, so much so that I think it has been overcorrected to the point to where we are today, which is where it's taboo to even mention it.
Tacking onto my last point, many believe (or used to) that nonverbal = intellectually disabled by default. This also has been proven to be untrue. Lack of access to speech devices, aides, and other methods of alternate communication was a huge roadblock to autistics in the past that had a lot to say, but were unable to verbally speak.
The third, and most controversial is that after the first two issues have been addressed parents find it difficult to face that their child may have a cognitive disability. If that is the case, you need to ask yourself why. Is the label of autism somehow better than that of a cognitive disability? If it isn't then why is it a bad thing to admit your child (or someone elses's) is also part of that category, as well? If one camp is truly no better than the other, then your feelings about belonging to both should not feel like failure, but rather like useful information that can help you meet your child's needs better.
For myself, I went years not understanding why my son was different than every other student in his autism classroom. I watched every one of them blast past him with skills, and even speech as he stayed at the same level. The teachers, and staff would tell me that he is not different [than the other kids in his class], even though I could clearly see that he was. He's likely never going to write his name, or use a fork, or buckle his own seat belt, but I'm okay with that. I pulled him out of school for safety reasons, but it truly was the best thing for him, because he needed to be taken care of differently. What I wasn't okay with was everyone treating him as if his intellectual deficits were somehow willful, or there to inconvenience them. If only he'd stop being so stubborn, and choose to learn. I can't imagine how frustrated he felt all those years in school doing the same tasks over, and over not understanding the purpose of any of it, and having so much chaos, and sensory overwhelm on top of it. If I could do it all again I would do it differently. I guess maybe that is why I choose to write this now. If you suspect your child has a cognitive delay, and truly is not understanding things, don't let anyone tell you that they are just choosing not to learn, because they don't want to. Don't let them put your kid through the agony of one on one tasks that they clearly don't understand, and cry through. I made that mistake, and I regret it daily.
I recall the day when Beans was diagnosed about 11 years ago now. You would not believe the worlds of difference in the way society, and doctors view autism now as compared to back then. It was just getting out of the dark ages when it comes it understanding, knowledge, and respect at that time, and I do mean at the very tip of coming out of the dark ages. It felt like eons ago compared to the way it is now. The developmental pediatrician told me that he was cognitively delayed, in all areas, and it will likely cause more struggles in his life than his autism ever will. I didn't believe her. I didn't hear it. I disregarded her. I forgot that statement. I purposely put that, and all of the things she said with it out of my mind, because what could she know? He was only two. No. I couldn't accept it, and as the autistic rights movement swept across the nation, and the world it seemed to support my theory, until facts didn't. I guess she wasn't wrong, not entirely. It just took me awhile to know what she knew several years ago. I hope that while this post might ruffle a few feathers, it might also reach a few parents that are in the same boat as I was, but feeling too scared to speak up, but knowing their kids aren't getting their needs met currently. I understand, and there are others who get it.