The Invisible Disability: Another Facet of Autism

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This article was contributed by Bobbi Wells, Autism Resource Specialist in the Eastern region and mom to a son with autism.

 

Haven’t you heard the old saying, “Never judge a book by its cover?”

Well, I am here to add to its meaning from an autism perspective.

As a parent with a son who has high-functioning autism, not only do I struggle with the challenges that autism brings into our daily life, but – hold onto your seat – at times, I also struggle with trying to convince people that my son, does indeed, have autism. And those behaviors you are seeing, well, they are manifested from his autism.

“He looks like a typical kid. He reads above level. He’s been on the honor roll since third grade. He played the piano and composed his own music at 5 years old. He memorized the US map and capitals in kindergarten. So why is he fidgeting? He was playing with stuff in his desk, so we punished him by turning his desk around. Why isn’t he listening? He needs to listen and follow along or he will fall behind. Why doesn’t he answer me? He is ignoring me and being disrespectful. Why does he say rude things? He does that on purpose! He is perfectly capable of being respectful. Why is he whistling? He does that to irritate me! He does that to get attention. He did that intentionally. He knows better. He is perfectly capable. …”

Maybe I should have titled this blog “Misunderstood!”

I am here to tell you he’s not fidgeting or not listening “on purpose.” He’s not intentionally being “rude.” He is not trying to irritate you with his “xyz” behavior. And he is not doing anything on purpose to make your life difficult.

In fact, it is his life that is difficult. He is doing his very best to hold it together all day. He is doing his very best to navigate in what he perceives as a chaotic world, full of social rules he doesn’t quite understand or know why it’s such a big deal to follow.

Even more astonishing is that the behavior you are seeing is actually a form of communication. It might not be the most appropriate form of communication, but it IS communication of what is going on in “his” world.

It’s unfortunate that people often judge others by what they see and conclude that a person can or cannot do something because of the way they look or their IQ.

International disability expert Joni Eareckson Tada explained it well when she told someone living with an invisible disability, “People have such high expectations of folks like you [with invisible disabilities], like, ‘come on, get your act together,’ but they have such low expectations of folks like me in wheelchairs, as though it’s expected that we can’t do much.”

Ask any of my colleagues who are parents to children with “visible” autism, how equally frustrating it is when their children are judged by their appearance of not being able, when they are perfectly capable. It isn’t any easier when you can “see” the weakness/disability. The obstacles are all still there. It comes down to a case of what I call “to see is not to believe and to believe is not to see.”

Let me explain: Seeing the disability/weakness and not believing in the abilities of that person versus believing that person is perfectly able, and not seeing his disability/weakness in preventing him to do so.

As I mentioned earlier, I am here to talk about the latter. Those who appear able, but are not, can often confuse and disappoint those who have placed those high expectations and preconceived ideas on them. “Well, he looks or appears perfectly capable, what’s the problem?”

Glad you asked! You see, the problem lies not with the person with autism, but with the person who has failed to accept this person with their strengths and their weaknesses. The problem lies with those around him relying on their own preconceived ideas and expectations.

“He is able to do it in math class, why can’t he do it in science class?”

What you and I take for granted in applying our skills everywhere we go and in various settings is often a challenge for those with autism who have a difficult time using one skill in this environment and then using it or applying it somewhere else. This falsely leads others to believe they are “perfectly capable” of a skill in science class because they did it in math class, or of observing others’ personal space on the playground because they do it in the classroom.

The bottom line is that everyone with a disability is different, with varying challenges and needs, as well as abilities and strengths. Thus, we all should learn to be understanding and open-minded as each individual presents themselves to us in that particular environment, instead of automatically judging with our own preconceived ideas of what they can and cannot do.

Plain and simple: Don’t judge a person with autism by their outward appearance or by their strengths and weaknesses. We must listen with our ears instead of judging with our eyes.

Bobbi Wells can be reached at 252-722-2058 or bwells@autismsociety-nc.org.

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