Autism Month Essays: Against The Presumption of Incompetence

Mu in a green hoodie in his favorite spot, debating whether or
not to visit the wild ducks in the pond. Posted as always with
the permission of the subject. © Kerima Cevik

When parenting both our children, my husband and I tried to make certain they knew exactly who they were and hoped they eventually understood that the labels they carried were things they could take ownership of and apply to help them navigate their lives more effectively. 

Our daughter has a clear idea of the entire scope of her multiracial and multicultural identity. Our multiracial, multicultural, nonspeaking autistic son is 15. I have tried my best to ensure he knows his heritage despite communication challenges. I have found other ways of showing him who he is; of indicating to him it is okay to be who he is and that we are proud that he is our son as he is. We want him to know we will be doing our best to support his efforts to live an autonomous life, and such a life must begin with an acceptance of his entire identity.

My son likes to watch Disney World travel infomercials on YouTube. One day he came into the office I share with him to show me a video. The video was a Disney Parks episode where parents were describing what the Disney experience was like with their daughter, who carried an ID/DD (Intellectual Disability/Developmental Disability) label. At the point where she described her daughter as having a developmental disability, my son stopped the video and put my hand on the child's image and then placed my hand on his head. I shook my head yes in response. I said "Yes, son. You are like her. She has a diagnosis of Down Syndrome. You are Autistic."  He hugged me and left the room. I stared after him, an emotional mess, stunned with surprise, shock, sadness, and relief, unknowingly shedding silent tears of pride. 

Knowing ourselves and understanding where we are similar and different from others is a life-altering affirmation of one's competence. My son arrived at this understanding and communicated his suspicions to me without uttering a word.Grasping the scope of one's disability is a giant step in self-advocacy.

 To some degree, everyone needs certain labels. They form the framework of how we begin to define ourselves. But many labels are not positive or even accurate ones, and sometimes they are forced upon us. In fact it may not be the label itself but how we ascribe meaning to it in everyday usage that may devastate. Some labels carry the baggage of bigotry. 

Many parents who impose the goal of becoming indistinguishable from their typical peers on their autistic children feel the idea of acknowledging that their child may carry an ID/DD label is an abhorrent barrier to normalizing them. Additionally, some schools abuse the power to label a child ID/DD on IEP documents because they want to segregate the child from typical peers when said child might do better with supports in an inclusive classroom. The results of either of these circumstances are some devastating potential outcomes to the autistic student that parents and professionals don't spend enough time considering when making arbitrary decisions for or against the use of the ID/DD label. 

I began thinking about how many autistic students were labeled ID/DD and how they came to terms with that label a great deal after my son came to me to question his own identity in gestural language. I was trying to catch up on my friends' status posts on Facebook when I read an entire thread that brought the entire question of the ID/DD label into sharp, painful focus. It was about a family being pressured by an IEP team to add an ID label to their child's disability designations. Several people who were academics, educators, activists and autistic advocates who carried the twice exceptional label were tagged to give their input on the advantages and disadvantages of accepting such a label. I was not one of those tagged.

My son carries the ID/DD label, not by choice but because that is his medical reality. If there is pressure on any family in a school setting to add this label, they need to understand that whatever they decide potentially changes the entire quality of their child's educational future, and this is not always a positive change. The aversion and abhorrence that people who should know better displayed when discussing accepting this label truly disturbed me.

 I'll try to explain why.

I came into this world with dark skin. I am no more able to hide or deny this identity than my son is able to hide or deny his ID label. Yes,  the ID label comes with a heavy burden to fight society's lifelong presumption of incompetence. There was a time when African American labels came with the presumption of incompetence as well as the false accusation that the amount of melanin in one's skin determined who was more intelligent. We dark-skinned people continue to fight these stereotypes. 

Being an African American woman carries lifelong challenges and injustices with it that made me more aware of ableism directed at my son. Despite the hardship, we now know that a clear grasp of a person's identity can give them self-respect that hiding it in shame cannot. The idea that because of these hardships, an identity is something that can be opted out of is wrong. What needed to be said in this thread that wasn't was does this child have a full professional diagnosis? Does that diagnosis include an ID label? If it does, then depriving them of the support they need by hiding this is like leaving a wheelchair user's chair at their departure airport. 

I thought it was our job to right the wrong of institutionalized presumptions of incompetence. That bit of ableism is the fundamental rock in the wall of segregation from every opportunity that keeps our loved ones from their rightful place in our society. History shows clearly that presuming anyone incompetent begins an othering of groups that slides into catastrophic abuses and oppression. There was an air of defeatism in this thread asking whether or not to allow the ID label on a child's educational record that brought me down. Our loved ones will always feel they are less than others if we simply accept the wrong-headed belief that giving a person an ID/DD label equals a lessening of their personhood.

I just don't know when we will get past the idea that if a person cannot speak or learn in the way the average person can, they are less than others in society. We tend to blame our student's disabilities for our societal failure to meet their educational needs when the truth is we have not changed the fundamentals of the way we educate our children since the industrial revolution. Why aren't we fighting to rethink and redesign learning to reach ID/DD students' needs and learning potentials? We simply passively accept things as they are. And each year, our offspring are given less support and less access to learning particularly when they are made to wear that label.

The largest issues I have about parental fear of the ID label and the presumption of incompetence is that if we do not fight the baggage forced on our loved ones with their neurological identity. How can we teach them allow them to carry this label with pride unless we can let our children know with sincerity that ID/DD labels are nothing to be ashamed of?

I wonder if this defeatist attitude contributes to depression and anxiety in our loved ones? I also worry  that denying knowledge about a critical aspect of a student's disability enables the potential devastation to the mental health of the student not aware of why they may have challenges in areas where their peers are succeeding, I wonder how much trying to opt out of ID/DD labels inadvertently slows progress creating educational methods that may maximize our students' potential because distaste for the ID/DD perpetuates our society's  presumption of incompetence. 

It is our responsibility to make our children matter by fully understanding what accepting the ID/DD label means. They can't accept themselves if we are afraid to say whoever they are, whatever their disability constellation entails, we accept them. Believe me, our offspring feel our shame and insincerity and internalize it.

We parents passionately demand better schools, better IEPs, and an end to the use of the r-word. I am thinking that we also need to take a hard look at our own attitudes and make an active effort to change them so our offspring can sense that shift organically and not internalize any subliminal ableism about the labels used to identify their neurology. 

Peace 

Dear Mustafa, We Are Brothers

 "Hi brother Mustafa we are brothers . I am here...."

-Henry Frost

I read that quote, part of an emailed message to my son, and did not notice for a good while that I was crying. I sat silently thinking, "Mu will want to frame this" then the tears impaired my vision. The respect, the understanding, the extension of the hand of friendship; it just overwhelmed us. I did not expect it. Help, even moral support, is not something we ever expect.

Four years ago, when I decided to homeschool Mustafa and search for as many adults like him as I could in an attempt to understand him and help him, I didn't foresee that such a young autistic person would think or worry about what was happening to my son. We were still being told that autistics and empathy didn't mix. We were assured other autistics wouldn't understand what my son was going through enough to type those words. I didn't realize how many autistics communicated the way my son is learning to communicate. I just wasn't given any expectation that I could even speak to autistic adults directly or that they would care enough about what might happen to my son to answer.

Mu has not been himself. The assessments have saddened him. The way they spoke of him while he was right there, no matter what we did to alert, warn,  and scold them or remove him from their voices, he heard it.  Hearing the litany of his presumed deficiencies and suffering the humiliation but not being able to defend against the ableism were breaking him down. The dislike of him as a person and a student who cannot simply be taught on a canned curriculum with the half-hearted effort sufficient for the average student was apparent and it was becoming unbearable. We tried to help him weather this privately. Then suddenly, Henry wrote.

Henry understood everything Mu was going through. It made me realize autistic kids should be writing one another. This was how this great movement toward community began for autistics a generation ago. Maybe it is time for an "autistic big brothers/big sisters" writing project now. Who better to let our older kids know it will be okay? They have gone through these terrible humiliating processes and survived to live another day.

No matter what hell I think I'm going through sitting alone in an adversarial environment with at least 7 other people all talking at the same time, sometimes gaslighting, sometimes skewing what was said, other times saving up parental sentences to serve their own purposes, Mu will always have it worse. He will be eternally underrated and forever measured by how compliant he is rather than his capacity to learn.

So I am wondering if all of the autistic adults and young adults out there can help Mustafa and the younger generation by starting a safe space and posting public letters to them. Build a kind of bulletin board for autistic kids to read letters of support, solidarity, and encouragement on all those topics that need someone just like them who cares. Let them know others went through it and there is a light at the end of the avalanche of others presuming their incompetence.

That light is understanding and friendship from their brothers and sisters in neurology.

Long live the neurodivergent society of friends.

Peace.

FAPE, Segregation, and Brown v Board of Education

“All warfare is based on deception.” 
― Sun Tzu, The Art of War 

"In these days, it is doubtful that any child may reasonably be expected to succeed in life if he is denied the opportunity of an education. Such an opportunity, where the state has undertaken to provide it, is a right that must be made available on equal terms."

- Chief Justice Earl Warren, Brown v. Board of Education (1954)


If you are an autism parent advocate, and you think any voucher system that locks your child away from peers is giving you educational choices and keeping your child safe, you are being deceived. 

Sometimes in the name of doing something right for our children, and with the best intentions, we parent advocates use our power indiscriminately and the consequences are devastating. Take Ohio's autism scholarship program for example. It sounds great doesn't it? Until a parent really understands the fine print. Things like: 


1. Parents are required to waive their child's right to a free and appropriate education (FAPE). 
2. The scholarship is less than the value of the funding provided for special education services in a public school setting 
3.  If the value of the scholarship is less than the services provided in a nonpublic placement, the parents must pay the difference
4. Parents of special needs children become part of the systemic segregation of school populations by degree of impairment, race and class
5. Parents inadvertently increase the defunding of already underfunded schools. 

So what parents are being asked to do is give up their child's right to be included in their community school, take less than what would be spent to educate and provide services for their autistic child in public school, and segregate their autistic child in a nonpublic school that may or may not be in their neighborhood, then pay the difference for that private segregated school.  What this law does is make ableism part of the system by implying to the children and school districts in Ohio that autistic children are not wanted in their own communites. They are not good enough to attend their own neighborhood schools. Like black children before Brown v. The Board of Education of Topeka, KS, autistic children are being hidden away from society and their parents are being bribed and deceived into helping segregate their own children.

Parents are signing away their children's right to a free and public education in the name of a safe school environment, or in the mistaken perception that nonpublic services are better. Being a student in a nonpublic school does not protect one from abuse and neglect.

 What other rights will we remove from our own children in the name of protecting them? 

Let me speak truth here. I was the black girl who integrated my 5th, 6th, 7th, and 8th grade classes in our school. Our family was the first black family to move to the upper middle class neighborhood in that rural area. It was not fun. It was not easy. But it made school staff and my classmates better able to tell their communities that black children were just children and deserved the same education in the same classrooms as white children. Our children should not be viewed as vulnerable creatures who if allowed to go out into our communities will be victimized. It is their right to go and exercise their right to be included as citizens of our towns and our nation. It is their Constitutional right. Disabled activists and parents fought and sacrificed for this right. If we are to advocate for our children we must understand they are people and not less than us. They aren't angels; they aren't babies. They are growing up. And it is our job to ask ourselves now what quality of life we want them to have as adults, and how we want our communities to receive them. Only then should we advocate and drive policy accordingly.

When parents sign away their autistic child's right to anything, they are doing them harm. When parents decide, for example, that because ABA works for their child that it should be the unilateral therapy method for all autistic children and work to drive policy to mandate funding for this one therapy method, they are defunding other peer reviewed therapeutic methodologies from reaching other children who need them. Children who might flourish under TEACCH, the Miller Method, DiR Floortime, and behavioral therapies like Collaborative Problem Solving.  I can't stress this enough. We need to review our priorities throroughly before using our power and privilege to make policy changes as parent advocates.

 We have no right to harm others to gain some expediency for our own children. This type of emotion driven policy advocacy comes from a mentality that I see in some parents. It permeates special education in particular. The first thing parents are told is to look out for their own child and let other parents look out for theirs. This is WRONG. Parental  rights in the IEP process are very limited. The only power parents have to leverage in this process is the power that comes from working together to improve outcomes and quality of services for all our children. The every parent for their own child mentality also enables the system of child abuse that is pervasive in both nonpublic and public schools charged with educating our children. Because it eliminates responsibility for reporting when witnessing harm to other special needs children. Parents don't feel they are stakeholders in the school system, so they don't report what they see if it is not their child. We need to accept that this is the case, and act today to make it stop. Making it stop will end the flood of homeschooling families and make our neighborhood schools a safe place for our children. 

Please read "A Different Kind of Choice: Educational inequality and the continuing significance of racial segregation" by clicking here to know more about why this concerns me so greatly.

The population of autism families I serve is disproportionately nonwhite, and depends on the minimal services provided in their public schools.

It had been my plan to keep my son from public school and continue to homeschool him. Because of these trends in parent advocacy, and the terrible harm this type of legislation does the populations of autism families that depend on FAPE, I have spent the last year preparing my own son to transition back to public school. I will fight for inclusion despite his degree of disability  Am I frightened for my son? Yes. But I am more afraid of what will happen to him if he is not allowed to live a life with the same civil rights others died for us to have. I fought for my right to be accepted as an equal in this society. My son must be allowed the same opportunity. Only his presence will educate them. His absence will erase him.

Any variety of vouchering is a systemic method of eliminating our right to a free public education. When you lose a civil right, it is nearly impossible to get it back. I am literate and educated because of a Supreme Court decision that allowed this to happen. Read the paragraph below. Then replace the word Negro with Autistic.  Hopefully then you will all understand what the fuss is about.

SUPREME COURT OF THE UNITED STATES

---

347 U.S. 483

Brown v. Board of Education of Topeka

APPEAL FROM THE UNITED STATES DISTRICT COURT FOR THE DISTRICT OF KANSAS

---

No. 1. Argued: Argued December 9, 1952Reargued December 8, 1953 --- Decided: Decided May 17, 1954

---

Segregation of white and Negro children in the public schools of a State solely on the basis of race, pursuant to state laws permitting or requiring such segregation, denies to Negro children the equal protection of the laws guaranteed by the Fourteenth Amendment -- even though the physical facilities and other "tangible" factors of white and Negro schools may be equal. Pp. 486-496.(a) The history of the Fourteenth Amendment is inconclusive as to its intended effect on public education. Pp. 489-490.(b) The question presented in these cases must be determined not on the basis of conditions existing when the Fourteenth Amendment was adopted, but in the light of the full development of public education and its present place in American life throughout the Nation. Pp. 492-493.(c) Where a State has undertaken to provide an opportunity for an education in its public schools, such an opportunity is a right which must be made available to all on equal terms. P. 493.(d) Segregation of children in public schools solely on the basis of race deprives children of the minority group of equal educational opportunities, even though the physical facilities and other "tangible" factors may be equal. Pp. 493-494.(e) The "separate but equal" doctrine adopted in Plessy v. Ferguson, 163 U.S. 537, has no place in the field of public education. P. 495.(f) The cases are restored to the docket for further argument on specified questions relating to the forms of the decrees. Pp. 495-496.

Two Autism Stories

Several years ago, I attended a meeting of parents and care providers to discuss the lack of county services available for their loved ones on the autism spectrum. At the meeting, an African American medical professional told me something that still gives me pause: "Autism is a disability for the rich," she said. “Only the wealthy can afford the costs of the intensive early interventions we as parents need to help our children succeed." She continued, “As African Americans, we are disproportionately caring for our children on the spectrum as single parents, with limited means, and are dependent on institutions like our public schools to give whatever supports they can."

As I continue my three year fight for appropriate supports for my own child, I ask myself each day, “Was my acquaintance correct? No matter how diligently I try, no matter the effort I make, will I be unable to provide my own child with the help he needs because of financial and racial disparities?”

Two stories show this disparity of care, resources, and options in a way that leaves me with heartbreaking concern. A Journey into the World of Autism is a series of photographs with commentary, about an against all odds, full on battle for the dignity and civil rights of a 14 year old African American boy, Daniel Tuttle Jr. Daniel was given a diagnosis of autism when he was 2 years old. He never received early interventions or any support services. His battle for services is still being fought by a woman who is not his mother. She was his first daycare provider as an infant; when she heard Daniel's mother was out of work and overwhelmed trying to manage his care, she did not hesitate to go through the process of becoming his care provider.

Autism Lives Daily in Our House briefly outlines the story of Jack Drinkwine, a white child diagnosed with autism who is receiving intensive interventions and supports. He has teams of medical and educational professionals working with him to improve his ability to navigate his world. Jack's mother, a university professor, discusses the combination of therapies and supports paid for by a combination of funding that Daniel Tuttle's care provider could never hope to achieve.
Daniels is homeschooled and sent to a speech therapist. Daniel's only other therapy, administered by his care provider, is a GFCF diet and the basic set of the shoebox task system, the foundational exercises in the TEACCH method. Daniel's care provider continues to try to place him in a safe educational environment where he is able to adapt to the classroom and receive at least minimal services and supports. Meanwhile, Professor Drinkwine advises other parents to acquire the intensive interventions for their children that she has, never considering that many parents and care providers do not have the resources available to them that a family with two working parents- a university professor and a high ranking military officer- does.

Is this disparity of service placing African American children on the spectrum at risk for more confrontations with aversive behavioral management techniques, fewer educational and therapeutic supports and a greater risk for either institutional care or catastrophic encounters with the criminal justice system as adults? It is a chilling thought for me as I look at my dark skin and my deeply autistic son.


Please read both articles and let me know what you think:

A Journey Into The World of Autism
Autism Lives Daily in Our House

More on Daniel Tuttle Jr. from DC & NYC Photographer Eli Meir Kaplan:
Against the Odds