Birthday Letter: Parenting Autism In The Age of Trump

I wrote this for my son on his birthday last December. It was painful and personal, and I withheld it for this many months without publishing it because it hurt so much to write it.

My son, surveys his backyard kingdom, holding
his iPad AAC device and wearing a sky blue t-shirt
that reads "Noncompliance is a social skill" available
@RealSocialskills photo © Kerima Cevik

 I was in doubt of many things after some post-election ugliness had visited our town, a sign of worse things to come. I remain concerned for his future and ours.

Happy Birthday Son,

In the 14 years since your birth, I have been forced to witness and experience some pretty sad and disturbing things. We are living in some very polarized, hate filled times. How will I be able to talk about this transition to your teens you are making that changes everything? But I must. Not because it will help you manage the legacy of trauma that is a part of from our racial heritage, but because talking about this is the only path to exorcising it from our futures.

You are 14 now, and I am not simply afraid. I am terrified.

Like your uncles and forefathers, you are big. It isn't just a matter of weight. You are a massive, tall, handsome 14-year-old. Not particularly large or small for our people. But your soft mustache and curly hair are making you look older. Then there is the look of awareness in your eyes. That is the thing that petrifies me. It is the look of understanding that might lead a policeman to misunderstand when you can't respond, to reach for a gun should you reach for your speech device, to shoot should you stand there trying to process why this police officer is shouting and conclude there must be danger and try to run away. No amount of police training or training of you on how to be a compliant brown body will change the statistics. The very high risk is that you, nonwhite and disabled, might meet catastrophe one day.

Those people who are supposed to provide therapies, supports, and services for you always ask me "How do you see your son in 10 years?" What the hell does that mean? I don't think in ten-year plans. I think in the only way we can think. I think in the universe of the breath. I inhale, wait, exhale that we are alive, in this moment, that we have survived harm another day in this now blatantly hyper violent world.

How I see you doesn't matter. How you see yourself matters. That stupid rhetorical query reeks of the presumption of your incompetence. The stench of the recalcitrant automatic mumbling of words that translate as "his cognition will remain static" and,"technology will not change the quality of your son's life." When in fact the largest improvements in the quality of your life did not come from the billions of dollars in autism research but in an idea that everyone thought was inane. The idea that became the iPad.

When I say they don't presume your competence I don't mean I want them to presume you are an autistic savant. It does not mean I expect you to wake up tomorrow with the ability to speak fluently and the ability to do 10-dimensional calculations in your head. The baseline gap between how the people who are supposed to be helping you view you and how you see yourself can be resolved by their simple adherence to the law. They need to accommodate you and stop asking me to tell them what you want when they actually don't care what you want or what I think about what you want.

One of my favorite photos of my son, age 5, in his wheels,
waiting for his ride to school. Image of a Latino presenting
male in a blue hooded coat, curly dark brown hair can be seen
just under the coat's hood. 

You are a teenager now. Remember that son.They must ask you to indicate a response to that aggravating query or any other question they have for you. This requires presenting the question in a communication structure that you are able to receive clearly, understand or try to grasp how you communicate and respect you enough to wait for and hear your response.  It isn't my life. It is yours. I cannot tell you how to be or where I want you to be in ten years.  Our goal as your parents is that no matter what happens, you survive, are safe, have lifelong community-based shelter, and that technology assists you to such a degree that you can live your autonomous life with minimally invasive supports or services.

They are supposed to be helping you and setting goals with you for you to meet.

They never speak of the elephant in the room, the fact that the world has shifted and we are now the objects of even greater hate than before. How does that fit into their transitioning youth plans? What are their ten-year plans for surviving that hatred, xenophobia,  that ableist racism?

How can you find your own way,  when everyone around you now works to diminish you?

Everyone will stand in your path and repeat what you can't do. You must will a path around that. Somehow, your father and I must survive this time of hate backlash and help you will that path. My son, you can do it. Find your own way and indicate to people what you want. Make your "voice", you will, heard. While we live, we will stand by your right to your agency in your own life. All you have to do is not give up.

Respect yourself no matter what others do or say to you, around you, or about you. Shake the insults off the way you shed water when you shoot upward in the pool or brush rain from your face.  Water is only good doing its job, cleansing or nourishing our bodies, our lands, our communities. Insults are like water. They are only useful doing their job. They don't reveal truths. They alert us that we are in the presence of those who would do us harm and that is their only purpose.  Remember the warning, and put either physical or mental space between those elements and you.


I want to see you here in ten years, vibrant as you are now, thriving. I want to see you happy, unafraid, unhurt.

I am usually not afraid of much at all. Thank goodness, I have lived a wonderful life. I've had several brushes with death, and therefore my soul is prepared. But I fear the rise in hate when it was already bad prior to the installation of the present administration. The weakest most spineless creatures have gained courage and they are out in force, saying the disabled should be euthanized, using black and brown bodies for target practice, shouting Muslims should be in camps. Keeping people from using public toilets as they once did my people.  And this time, I have not been able to abate this rising terror.

Your very name makes you a target. That fact is sadly ironic since you were named for a staunch secularist. You have no idea what this is all about. You are innocent of any understanding of what this means but your name, your great grandfather's name, may cause you to come to harm, and that has frozen me in fear.

And yet we must endure. We must continue to show compassion, mercy, and humanity. Not because the dream has been deferred beyond all recall, or because I believe love can cure all. But because it is our human right to live safely in our own homeland. We are Americans, my son. This is our home as much as any citizen's. We have a right to live here in peace.

Your opinion of yourself can elevate or devastate you.

I hope you know by now that you are loved. We have worked very hard to make that clear your entire life. There is no question that you are a wanted and welcomed member of our family. There was great joy when you and I survived your birth. But what is more important, and what I want you to take forward into the rest of your life is that you are respected here. When society is structured to discriminate against you because of your racial, ethnic, and neurological heritage, remember we are here, in your heart, we are your haven.

Remember I am not or was ever ashamed to be in this black body. I am proud to wear the visible genetic legacy of my ancestors. Each time another person gets away with murder, it is society's shame not ours. That is not the fault of our skin color or any divergence in us. That is the burden of those who facilitate and enable the harm that is escalating against us.  It is important that you never be ashamed of who you are, and have patience and understanding of yourself as you are.

Don't stop communicating however you can.

If you cannot use verbal speech that doesn't matter. What matters is that when a means to communicate is presented to you, you take full advantage of it and use it to make your voice heard. I know it isn't easy. Being oppressed means that attempts will be made to instill the feeling in you that you are less than your peers, that you are lacking, that you don't, or can't. Don't ingest that poisonous rhetoric. How others see you is something you can build with your own will. Your will is prodigious. That is your strength and your genius. That indomitable will that never gives up the goal you set for yourself. Go after communicating son.  Make yourself heard. They can't speak for you if you have a voice that exists whether it comes through your vocal chords or not.

Don't allow anyone or anything to goad you into anger. Inciting anger is a trap that creates an excuse to harm you.

Mu with his second iPad AAC, wearing sunglasses,
trying to decide he really wants to leave the house. Yes, blue is
his favorite color; he's wearing his blue polo and gray
shorts. ©Kerima Cevik

This is a label that is forced on us, and we must not allow others to try and enslave us through this lie. We are not inappropriately angry people. It is not wrong to be angry about injustice, about harm, and about wrongs sanctioned by those who claim to wish to protect society and defend it. Anger in and of itself serves a purpose as long as it doesn't drive your actions. But anger should not be a badge forced upon us. Do not allow it son! You have the patience of Job. Remember to keep applying that patience to your life regardless of what people who may wish you ill try to do to push reactions from you. I know you can do this son! You are a great personality and I want everyone to know the depths of kindness and compassion you display. Remember what I said. What people try to label you is not what matters. Who you are and how you define yourself matters. Anger is meant to be a flash of emotion that passes like a lightning storm. You show us that the false stereotype of the silent, violent, autistic male is just that. Don't allow situations or people to gaslight you into accepting states of mind or states of being that are not in your nature.

Remind me and others that you are not a child.

All parents have to be reminded that their children are growing up and growing older. I will get nostalgic, I may waver. I may have the best of intentions but treating you like you aren't a teenager is wrong. It is your job to remind me. It is going to take more than your burgeoning mustache. You have to be courageous as you are son; and stand up for your right to increasingly have a say in your own life, even if that means standing up to me, your aging mother. That is your task my darling, to advocate for yourself. It is mine to get out of your way and allow you to do that as much as I can before I'm no longer here.

Never neglect yourself.

Care of self, remember Mu. The body you occupy is the only thing you have that is truly and uniquely yours for as long as you need it. It is your spaceship in this cruel, alien land. Take care of yourself and your home environment as much as you can. Take care of your mental health, your hygiene, your dental health. Do whatever you need to do to remind yourself you matter. Rest when you should. Health is something you can't regain once you've lost it. My life was at times very hard, and as you know, my health has suffered from this.

I am still terrified. Every day we step out of our front door. Into our backyard. I am afraid they will harm us. But I am also very proud of you. You are growing up.

I do love you with all my heart, my son. I don't know what the future holds for us. Things are looking very grim. But more than love, I respect you. Live the rest of your life knowing that if only me, your father and your sister respect you, that is more respect than most have all their lives and all the proof you need to respect yourself.

Have the happiest of birthdays Mustafa. May we all survive the next ten years.

Love, always,
Mom


NOTE:
The v-neck shirt is designed by Ruti Regan and available in limited edition lots at https://www.bonfire.com/real-social-skills-t-shirt/
Photographs are posted with permission of the subject

Autism Essays: Recalibrating Autism Acceptance

Poster of Mustafa Çevik taupe letters on a black field read: This
Neurodivergent Multiracial Adolescent is aware of his mother's
race is aware of his autism and their ableism Deserves Respect
Your Awareness if paving the road to hell
Presume his competence #Tone it down Taupe ©Mustafa Nuri ÇEVIK
and Kerima ÇEVIK

Fiat justitia ruat caelum.

Sometimes I use profanity when I communicate. This is going to be one of those occasions.

If the three branches of the federal government united tomorrow and declared that henceforth Autism Awareness Month would be named Autism Acceptance Month throughout the nation it wouldn't mean shit to me. Maybe I would have been excited about the meaning of such a possibility four years ago. I'm not now. You see acceptance without representation is not acceptance. What I have seen is an insufficient amount of representation, objectification of intersected populations across the entire autism community, whether medical model or disability rights and a great deal of ableism.

My lack of enthusiasm is rooted in the fact that autism acceptance is now defined differently by every stakeholder presently promoting the concept. Acceptance as it was originally presented by autistic disability rights activists like Paula C. Durbin-Westby, is being drowned out by people who aren't really receiving or disseminating the core message. They are simply trading one word for another without the foundational mind shift necessary to grasp what is meant by acceptance and apply it to their lives. Tolerance is not acceptance. Tolerance is putting up with something even if you don't like or agree with it. Acceptance is lending credence to something or agreeing with it. Right now, many parents, professionals, organizations, allies and famous autistic people with internalized ableism conflate the word acceptance with the word tolerance and that needs to stop. One's tolerance of nonspeaking people doesn't mean one accepts them. This conflated message is wreaking havoc on  the message and purpose of Autism Acceptance Month.

The way autism acceptance has come to be presented is very much the way equal pay for women has come to be presented. The voices heard were white and had large platforms from which to broadcast their message.  On those platforms, all intersected populations of women were used as poster children for the cause, while their voices were ignored or silenced. The equal pay act of 2009 was named after a white woman in a country where my intersected demographic, Black Latina women, earn 54% of what white males earn. Ms. Ledbetter and her peers earn 78%.  Despite the so-called victory of the Ledbetter act, that disparity is not being addressed. Because the conversation of equal pays only matters when the speakers are white, once pay parity between white males and white females is reached, the rest of the women, minority, disabled and trans,  women in poverty and abusive situations in which equal pay could be salvation from disaster, won't matter to society. So it is for the appropriation and skewing of autism acceptance.

In the autism conversation, the demand for acceptance is false if acceptance means the exclusion or objectification of people of every intersected population in any acceptance model. If acceptance means only those who speak, and those who speak insist that those who do not use verbal speech are less than their peers with verbal speech, then that acceptance excludes and is thereby ableist. If an autistic woman is presented as our autistic mentor because she is famous and goes from TED Talks to book sales to conferences telling people that nonspeaking autistic youths  don't merit the resources that autistic youths who use verbal speech do, then that is not acceptance. That is ableism. If famous white autistics insist that they wish to continue carrying the label of Asperger's syndrome because they don't want to be associated with their peers in neurology who will always be visibly divergent, that is not acceptance. That is ableism and to both declare that one demands acceptance while rejecting one's own divergent peers is hypocritically ableist. If someone is presented as a neurodiversity expert who is white, cis, male and knows nothing about the needs or crises of intersected and nonspeaking autistic populations, but is constantly placed above autistic activists of color and neuroqueer activists and presented in the media as our leader and our expert on neurodiversity, then neurodiversity is being skewed to exclude intersected populations that have helped to bring the movement to this moment in history that is benefiting primarily white, famous, mostly male autistics.

My son and his intersected divergent peers have the human right to be accepted not tolerated. I shouldn't have to take the entire autism community to task for styling themselves superior to him or his peers.Yet here I am having to do so.

If families whose children have assistive technology and intensive speech services to communicate  now expect their children to become indistinguishable from their peers, that is not acceptance. If it is not understood that the presumption of competence requires the acceptance of all autistics, regardless of degree of disability, but stakeholders are unwilling to accept autistic community members who will remain with a degree of disability that will make them visibly disabled for the rest of their lives, then the message of autism acceptance is failing.

Here are some truths. Some autistic people also have intellectual disability that is severe. They have health concerns that are extremely disabling. If that makes stakeholders uncomfortable then the stakeholders are ableist.

We have to recalibrate the term autism acceptance.  A clear definition of what autism acceptance is must be stated in such a way that once any stakeholder attempts to use this term they will be held to a standard in which bigotry and ableism will not be tolerated. Those styling themselves experts in neurodiversity need to first root out their own internalized ableism, ableism against nonspeaking autistic people, racism and ethnic bias, homophobia and transphobia. Acceptance means accepting everyone autistic. Acceptance does not mean a country club for autistics who have achieved success to the exclusion of those who cannot do so because the world currently favors white, cis, autistics who can pass for allistic.

In a disabled population where 90% of the adults are unemployed, having a tech job fair for those who are verbal doesn't mean shit to me. My son is the child of a software engineer father and a former database administrator and linguist mother. He is allowed free access to a computer with no protection of the operating system from inadvertent tampering on his part. He has owned more than one computer. His sister's operating systems have repeatedly crashed over the years and hard drives have been reformated mainboards rebuilt and replaced, new computers bought. Our son is 13. He has spilled things on his computers, both PCs, and MACs, but he has never crashed an operating system, opened a computer virus or malware. Think about that for a moment. Yet my son would not be considered at any job fair for autistic people because he has no verbal speech and his AAC support is not sufficient to have him communicate his own interests or talent on electronic devices. A vast majority of autistic youth and adults, some who use verbal speech and some who don't, are in my son's position. They are not considered worth the resources when they are worth every resource available. Until our community gets that and works to lift all its members up, we will stagger along every autism month of every year, bleeding as catch phrases and terms are leeched from autistic activist culture and absorbed by the mainstream autism nonprofit industrial complexes for their own use at the rest of the autism community's expense.

We need to reclaim the term autism acceptance. We need to declare that acceptance means the true inclusion of everyone in our community. A community effort must be made to hold a mirror to ableist community members and show them the harm they are doing, demand they mature enough to accept everyone, and give our intersected members the agency in this movement they deserve.
Silently watching this happen without taking steps to make it right is enabling it.

Let justice be done, though the heavens may fall.

Post Script:
On the first day of Autism Acceptance Month, Paula Durbin-Westby wrote the following public service message, which needs to be emphasized and propagated throughout the autism community:

 "PUBLIC SERVICE ANNOUNCEMENT. Remember, if you or your organization uses the words Autism Acceptance, Autism Acceptance Day, or Autism Acceptance Month, even if you also throw in "awareness," You are making a commitment to support NEURODIVERSITY because that's the essence of Autism Acceptance Day/Month, started by pro-neurodiversity, anti-cure Autistics. Please share. I think it is critically important that, as other organizations and people use the term "acceptance," that they use it in its original meaning for those of us who have worked hard to make Autism Acceptance an *alternative* to "I accept my child but I hate their autism..." rhetoric. Because I am struggling to keep my family supported, I can't be online every minute of April. Please think about this when you use it. It's Time to Take Back April! Autism Acceptance Day and Month. Pro-neurodiversity, pro-supports, and services, against "cures," AAD was started to counter April "awareness" stunts that demean us. It has expanded to become a way of viewing Autism in a positive and accepting way. Moving WAY beyond negative "awareness!" NOTE: NO cure-oriented posts will be accepted. This is Autistic Safe Space- nothing anti-autism or anti-Autistic. Thank you in advance! "

The Autism Acceptance Action by Paula Durbin-Westby can be found on Facebook at:
https://www.facebook.com/events/1693850024204283/

Tone It Down Taupe - the counter protest action to Light it up blue, is on Facebook at:
https://www.facebook.com/Tone-it-Down-Taupe-446945788708219/

Autism Acceptance Month's website is here:
http://www.autismacceptancemonth.com/