1 Acknowledge Vulnerability; Presume competence
B. Martin Allen
I have a place in this world. The fact that I am here is proof of that. Trust that we will find that place, together.
I WAS YOUNG ONCE, and all I knew was what others told me. I grew up not knowing that my needs were valid. I grew up in a world where I was defective and unable to justify my existence. As an adult, as a parent, I know no one needs to justify my children’s existence. We exist, full stop, no qualifiers needed. What follows is clearly not an account of what a younger me would have wished adults knew, because I could not know. I offer instead what I needed adults to know, colored by the hindsight I’ve developed over the years as a parent—and now as a grandparent.
Expectation
I can feel your resentment. If I am not the child you wanted, if you feel your life has been made unfairly difficult, I feel that. Throw out all those damning words of diminished hope foisted upon you by people who call themselves experts. If you believe them, I will, too. If you love me, but you wish . . . that wish is a barrier, too. It serves as a roadblock to your love.
I may not be capable of toughening up. Exposing me to sensory onslaught only drains my reserves. I will not develop an immunity to sensory or emotional pain simply by prolonged exposure, even if that exposure is called therapy. I need safe spaces. I will be better equipped to take risks and test my limits if I know there is a real safety net under me.
I need to learn and grow at my own pace. I know you’ve heard this before, but uneven skill sets are a real thing. The linear timeline of what is learned when it is, is a guideline, not fact. Don’t waste energy worrying over what I can’t do, and don’t let that hold me back from fully exploring what I can do.
Your fears may not be reality. Stay aware and protect me, but don’t fall into the trap of thinking that I am so different that you are the only one who could possibly see me as special. If I am wonderful enough for you to love me, others will see that as well. Not everyone is making fun of me. Not everyone is a potential abuser. Do not protect me so much that I do not have room to connect with others. Even if I struggle with much-vaunted life skills at ten, or fifteen, or forty, do not let your imagination project that into some nightmare adulthood for me. I have a place in this world. The fact that I am here is proof of that. Trust that we will find that place, together.
Connection
If I only know people with no known disabilities, I cannot help but question my worth by sheer deductive reasoning. I need to know others like me, to know I am not alone. I need that connection, but do not be troubled or confined by a narrow definition of this. I may find other autistics whose autism looks different from mine. Even if it’s hard for you to see how alike we are, we will see our shared experience. I might find other friends in the broader disabled community. We are more alike than different. Some of these people may be older than me, and I can learn from their wisdom. Some may be younger, and I will be their role model. I may make these friends in person or online. All interactions hold value. The point is, broaden the scope in your search for my community. Let me know that in a sea of sameness, I am one of the many, many different, and in that variation lies beauty.
In my relationship with you, I need to have the power to say no. Yes, you are still the parent, and I do not always know what is in my best interests. Having ownership of No is not the same as getting whatever I want, but rather an affirmation of that very human need for autonomy. Autonomy is dignity. Autonomy says I am a whole, valued person who is as worthy of a place on this planet as any other human. I need to freely practice this skill and see my No paired with your unconditional love. This will build strength and resilience that will carry me long after you are no longer there to hold my hand.
However, even if you respect my No, others will not. I exist in a world where sexism and ableism are used to prop up one another. My No will be discounted. Autism will be used as an excuse to validate this violation of my autonomy. When I say No, I will be told I am being mean, thoughtless, or selfish; that I do not understand. I will be told this by teachers, bosses, and potential suitors alike. You, too, navigate this emotional manipulation, often without having to give it much thought, but it will not be so clear to me. Show me. Teach me to recognize it. This will not leave me bitter and cynical if done in a loving and open way. It will provide me with the tools I need in adulthood.
Competence
Presuming competence is critical. It is a cornerstone of respect. That does not mean it is easy. Often, people who want to embody this ethic, people who truly believe they live this principle, will find at times that they fall short. The presumption of competence is not an act that can be completed. It is an exercise, a constant work in progress. To practice this principle, you will need to keep your heart open to being wrong. Your ego may need a gut check. I promise, it is worth it. I will grow in beautiful ways if this is the practice of those around me.
In a perfect world, we would all be guided by the presumption of competence, not just in regard to disability but in all human interaction. But we do not live in a perfect world. In the real world, no matter what skills I acquire—be they social, emotional, physical, or educational—there will be a sizable number of people who will presume me to be incompetent. Brace me for it. Make sure I know my rights. Let me know over and over again that I am so much more than the box some small-minded person wishes to fit me into. Practice with me the interactive tools I need to stand up in the face of those who do not believe in me.