What If Everything You Were Told About Autism Was Wrong!

What If Everything You Were Told Is Wrong?

I’m talking about profound autism, or what some are now calling Level 3. What if it’s not true that your child has an intellectual disability, but instead has a motor impairment called apraxia that prevents them from telling you what is going on inside of them?

When the Labels Don’t Match What You See

I was in denial about my son’s autism for a brief time because I couldn't believe he wasn’t smart. I held on to that belief, but after years of seeing little progress, I started to lose hope.

No professional ever tells you your child is not smart. Instead, they give you labels like intellectually disabled, globally developmentally delayed, special needs, and cognitively disabled.

Searching for Answers Everywhere

Like every parent, I scoured the internet for as much information as I could. I tried countless biomedical interventions and various therapies.

I even considered moving somewhere else where more services were available, but I comforted myself with the thought that it really came down to how good the people working with him were.

Apraxia: More Than Speech

I clearly remember asking Blake’s speech pathologist whether she thought Blake might have apraxia. Her answer was, “It’s very hard to diagnose.”

Apraxia did come up in my Google searches. But what I did not know—and have only recently learned—is that apraxia does not only affect the motor muscles in the mouth. It can affect the entire body.

Even the eyes have four major muscles that control them.

Trying to Imagine the Experience

A recent example I heard of what it’s like to have apraxia is trying to trace a star while looking at it through a mirror. I haven’t tried this myself, but I can imagine that it’s exceedingly difficult.

Now add sensory issues like not being able to filter out noise or tolerate bright lights.

These are probably not great ways of truly experiencing what a nonspeaker goes through, much like trying to imagine being blind by closing your eyes for an hour. But it does at least make you pause and imagine what someone with this condition might be experiencing.

Who the Real Experts Are

The experts have been telling us that our kids are intellectually disabled and that we need to use behaviour strategies and repetition to change their behaviour.

The true experts are the nonspeakers themselves.

When Communication Finally Appears

Thanks to Soma, the creator of Rapid Prompting Method, and before that Facilitated Communication in the 1980s, and more recently Spelling to Communicate (S2C) and the Spellers Method, we now have many nonspeakers who are able to communicate their own thoughts, opinions, and desires.

I discovered Spellers when someone mentioned a communication method in a Facebook comment. I had never heard of an actual method that was used for the nonspeaking population besides PECs, which we used when Blake was younger and later moved on to an iPad.

This still yielded nothing more than a few requests and basic phrases.

Taking the Leap

That comment on Facebook led me to buy the book The Spellers Method. The assuredness of the parents, combined with the full explanation of apraxia, was all I needed to seek out this method.

Fortunately, I missed all the negative information that can surface when researching S2C or similar methods. I can understand why it’s hard to believe this works—especially when you’ve been told your child is intellectually disabled.

The Moment Everything Changed

With just a few sessions, I discovered Blake not only knew how to spell, he could recall anything you read to him.

How was this possible? How could I have missed that he was so intelligent on the inside?

It’s very hard to grasp that the body is in such conflict with the brain. Why does he watch Sesame Street over and over? Are these loops that he is stuck in, or does he really enjoy them?

The Exhaustion of Guessing

Unless you have a nonspeaker in your life, you have no idea how exhausting it is to guess everything.

What he likes to eat. How he’s feeling. What music he enjoys. What he wants to wear.

Making every life decision for another human being.

Now imagine what it must be like to be him—never truly getting to make a decision.

Presuming Competence Changes Everything

Even presuming competence was a complete game changer. After doubting for years whether he even understood what I was saying, I began to realize he understood everything I said.

That shift was life-changing.

This wasn’t denial of his disability—his autism and the comorbidities like OCD, seizures, and sensory issues are still very prevalent, and his health continually affects his ability to type—but knowing he was taking in the information around him and answering difficult questions changed everything.

I think parents of open spellers are not bragging about how smart their children are because people can’t even digest their spelling at all.

The Cost of Not Presuming Competence

In S2C, they say it is the least dangerous assumption to presume competence, because the trauma of treating someone as intellectually disabled is far greater than the alternative.

I don’t use the word trauma lightly. I believe what my son has endured is nothing short of traumatic.

I have apologized to him for so grossly underestimating him. All I can do now is do better.

The Shift Is Already Happening

I believe him to be the strongest person I know, and I am immensely proud of how hard he is working now that I am finally giving him an opportunity.

The paradigm shift is happening. Nonspeakers are communicating and telling their own story. I am fascinated to witness the change that will inevitably happen.

How do I know this? Because I am a great believer in the fact that the truth will prevail. You can’t argue with results.

Are you seriously going to deny someone is speaking for themselves when you witness them spelling on a board, when no one is even touching their hands or moving the board?

I’m flabbergasted that people even try to make the argument.

The nonspeakers have waited long enough to be heard!!!