For the autism community, autism acceptance appears to be a distant goal.
Because of my experiences and those shared with me by others, autism acceptance has become an important issue for me.
Having only learned of my diagnosis 2 years ago at the time of this writing, I have so many questions about how my life would have been different had I known.
Because of my late diagnosis, I am also painfully aware of how people treat you once they learn of your diagnosis. Post diagnosis, people who knew me my whole life literally started talking slowly in my presence, correcting things I said, and explaining to me how to handle situations.
In addition, because of my late diagnosis (maybe more accurately because no one really knew of autism back in the stone ages when I was a girl!), I was not exposed to anything having to do with autism.
I am sure that cut both ways. In some instances, knowledge and information probably would have been helpful, and in others, growing up just seeing people as people was probably beneficial.
Maybe one of the areas in which I am most thankful this was the case is the area of the literature to which I was exposed as a girl.
None of the stories read to me by caregivers included the word autism even once, yet many of the stories resonated with me and made me feel like there were those out there with my same struggles. They made me feel accepted without even referencing autism or autism acceptance and for that I am grateful.
“The Princess and the Pea.”
No, like many girls and women with autism (though not all!), I was not a girly girl. I didn’t have a love of princesses (though I admit I totally wanted to take a spin in Cinderella’s carriage!).
I had a hunger for acceptance. I just didn’t know at the time I had a hunger for autism acceptance.
This story, of a princess who was so different from everyone else and was yet accepted, spoke to my heart.
And even as an adult, it is important to me today.
Lessons on Autism Acceptance from “The Princess and the Pea”
Not quite two hundred years ago, in The Princess and the Pea, Hans Christian Andersen (1835) blessed us with the story of a prince who wants to marry a princess. Not just any princess, he wants to marry a real princess! On his quest to find a real princess, he determines that for each “princess” he meets, “[t]here was always something about them that was not as it should be.” His efforts prove fruitless. The prince feels sad as he returns to the castle.
The prince apparently determines it is better to be alone than to be with someone who is not exactly as they should be.
As we will learn later in the story, the actual traits missing in the princesses the prince met during his search are sensitivity and honesty.
What a lovely notion in a world which too often deems inferior those people who are truly sensitive and painfully honest!
Fortunately and unfortunately, for those of us who are autistic, these traits, though seemingly contradictory, run high.
Having these traits is fortunate when they keep us from something dangerous, and unfortunate when they rise to a level that disrupts our daily lives. In addition, people around us struggle to understand how an “everyday” sound, a taste, a texture, etc., can have such a huge impact.
They struggle to see that though frequently our nonverbal and verbal communication may be subtle or even nonexistent, we sometimes feel both physical sensations and emotions deeply, and paradoxically, communicate about them with unparalleled accuracy.
After the prince returns home, a storm unleashes. A knock is heard at the city gate. The old king opens the gate to reveal a woman contending to be a real princess. If her claim proves true, the prince has found his mate!
Would the princess have stopped at the castle had the weather been clear? It is the storm that drives her to the prince, to the man she would marry.
What a relief for the princess to be invited in out of the storm, to find people who not only want her to be who she claims to be, but will accept her if she is. And what a relief for the prince that, after all of the searching, the answer has come to him.
Having autism or caring for someone with autism is sometimes like being in a storm. It feels as though rain falls torrentially, wind blows perpetually, thunder claps constantly, and lightning flashes incessantly. Even in sleep, it can be difficult to find relief from the stimuli around us, both internal and external.
The storm can take many forms. It may be a struggle with relationships, with general communication, with an employment situation, or with academics. In these situations, you may feel the bite of the wind, the rumble of thunder, and each and every drop of rain.
How many times have you found yourself in the storm?
Yet, how many times has an answer come to you in the storm? How many times has relief come just as you were about to give up, and probably in the worst of meltdowns or the worst of frustrations?
Sometimes it is these most extreme situations or circumstances that make clear the answer.
Like the princess, seek shelter in the storm, and continue to move forward. And like the prince, do not ever settle for less than what you seek.
Was the Princess Sleepea?
Andersen tells us the princess is not immediately accepted by the prince and his family. She must first pass the test of the queen. As she slept, would the princess notice a pea twenty mattresses and twenty eider-down beds beneath her? Yes!
Imagine the level of sensitivity she must possess that she does feel its presence. Just imagine how hard her life must be, how hard surviving the storm must have been for such a sensitive creature.
This sensitivity is exactly what the prince sought. Andersen does not tell us exactly why the prince sought this level of sensitivity. Whatever the reason, this quality is deemed so desirable and appears to be so rare that this particular princess is the only princess who demonstrates the right characteristics to even be put to the test.
And yet, far from being delicate or fragile, this sensitive princess not only survives the storm, but also a night that is so difficult it leaves her literally “black and blue all over [her] body.” In so doing, one might argue that she exhibits strength, determination, and courage.
Just like the princess, those of us with autism experience the world differently than the people around us. Just like the princess, we would feel the presence of the “pea” under the mattresses and beds. Just like the princess, at no time during the night would we have gotten used to the lump caused by the “pea” and snuggled in to have a good night’s sleep.
Exposure to irritating stimuli like the pea can be downright painful for someone with autism. These stimuli can leave us with rashes, whether from just the sensitivity or from the scratching that results. They can cause emotional bumps and bruises. They can leave scars on relationships not strong enough to tolerate our uniqueness. And these are just a few examples, as the type and variety of potential harms experienced is tremendous.
Just like the princess, in living with this sensitivity, in facing the storm, in seeking shelter and in confronting strangers, we demonstrate strength, determination, and courage.
Would the Princess Tell the Queen She Was Unhappea?
While many would tell you that the princess had passed the test by feeling the presence of the pea, it appears that the test had a second part.
For to pass the test, the princess must also share with the queen that she felt the presence of the pea.
So let’s not just stop by noting the extreme sensitivity of the princess. Let’s also delve into her response to sleeping on the pea-ridden bed.
The princess is asked how she slept. “’Oh, very badly!’ said she. ‘I have scarcely closed my eyes all night. Heaven only knows what was in the bed, but I was lying on something hard, so that I am black and blue all over my body. It’s horrible!’”
It could be expected that many an individual in a similar situation would respond with the polite white lie that they were very grateful and had slept well. The princess, however, is not the type to sleep poorly, pull herself together in the morning, and in a polite and princessly (I made that word up!) manner indicate that she slept beautifully, thank you so much for asking. She tells it like it is.
Yet, her honest (and shall we say thorough) response, rather than disqualifying her from being an acceptable mate for the prince, renders her marriageable. Had she politely indicated that she slept just fine, she would have been deemed not to be a real princess just the same as if she had not felt the pea under the bedding at all.
Similarly, those with autism tend to be very honest. People with autism tend to attempt to construct systems of rules by which to live in a world that challenges them. Those rules can include an understanding of the need to deliver polite responses, and yet somehow, what is communicated is direct and stunning in its accuracy.
Arguably, the level of honesty that characterizes those with autism could be a valuable tool in solving the mysteries surrounding what many consider to be a disorder. It is this very honesty that enables people with autism to seek the help that they need.
Imagine what life would be like for the princess were she unable to share her painful experience of the night before. Presumably, she would go back to bed on the same pea and have a second horrible night without rest. And a third. And a fourth. And this discomfort, this pain, would continue until she left the castle, for why move a pea that bothers no one! More than that, she would fail the test and lose the prince!
Even with this directness, it is hard for others to hear us communicate a need that is so outside their own experience as to be almost unbelievable. For people with autism polite and princessly answers would present an obstacle to having needs met, just as it would have prevented the princess from finding comfort, passing the test, and marrying her prince!
The princess is not turned away because of her sensitivity. She is not turned away because of her honesty. Rather, she is accepted because of these traits. These traits are what the prince desires. What his family wants for him.
With autism, we seek comfort, we seek peace, and sometimes we just seek something different than what we are facing today. We want acceptance for ourselves which may only come with autism acceptance.
We are willing to look far and wide for it.
We seek acceptance, we seek academic success, or on a bad day, any success.
Some days, success is defined by just having something, anything, be easy. We utilize all the resources at our disposal. We listen to the well-intended advice of others, we hear their whispered criticisms, and we try to survive their rejection. We experience heartbreak. We literally exhaust ourselves in these efforts.
Just as the prince found his princess in the storm, and she him, we can often find our acceptance here. It may have arrived as it heard of our search, or it may have been provided by God Himself, but even as we worry and wait, we may find our peace amid the storm.
It requires the willingness to look at a water-logged girl and see a princess.
It requires the willingness to welcome difficulty into our home when it would be easier to close the door.
It requires the willingness to accept in others, even to value in others, that which is different than ourselves.
Sometimes, it requires the willingness to accept in ourselves that which makes us different.
That is what autism acceptance requires.
Had the princess not demonstrated sensitivity and honesty in conditions that had no doubt made her life difficult, she would not have been deemed worthy of the prince.
Often we read stories like “The Princess and the Pea” and focus on the happy ending, but we should never discount the need to survive the storm in order to reach the rainbow (or the wedding!) that awaits.