Why Autism Training for Law Enforcement Doesn't Work

Add A black T-shirt with white lettering on the front that reads:
[This Ain’t / Yo Mama’s / Civil Rights / Movement].
The sleeves and bottom edge of fabric have been cut off.
The back of the shirt has white lettering that reads:
[Hands Up United]. Collection of the Smithsonian
 National Museum of African American History
 and Culture, Gift of Rahiel Tesfamariam

In the aftermath of events in Ferguson, many Black autism moms are giving voice to their fears for their sons. NPR published an article about the Autism Society of Los Angeles teaming with the Los Angeles police department sponsoring a training seminar organized by autism mother and special education teacher Emily Iland for autistics, to teach them about dealing with Law enforcement and to familiarize law enforcement officers with autism and also aired it on a broadcast which you can reach here.    

Now I need to explain that the Denver police officer who shot 15-year-old Black autistic teen Paul Childs III,  had not only received autism training but knew Paul personally and had returned him home just a few days before when Paul had experienced a severe seizure and wandered off, disoriented. Paul trusted the police officer who shot him to death in front of his mother.

Stephon Watts was shot by a Calumet City police officer who had also received autism training. The police officer had arrived at the scene with his partner and ample backup knew Stephon and was fully aware that Stephon was not a threat. The officer who shot Stephon Watts, his partner and other officers on the scene also had tasers. No one bothered to use them. So much for autism training. I learned this painful lesson firsthand when despite my efforts in first responder training in Maryland, Robert "Ethan" Saylor, a young man with Down Syndrome was killed by off duty policemen refusing to listen when told he had a behavioral protocol in place and his mother was on the way. Only after this death did people take this issue seriously. 

Reginald "Neli" Latson was trained in how to manage a police encounter. His behavior was entirely correct. Unfortunately, no one taught Neli how to handle an individual policeman who was off duty and refused to believe Neli was not a threat. In 2013 Neli threatened self-harm because of what was happening to him at the group home where he was to serve out a 20-year sentence and police were called. He is now facing a return to a hellish prison existence, and he doesn't know what he did wrong in the first place. Another awful wrongful call, another disastrous encounter with police, and Neli's life, which was already ruined, is doomed. Out of the media's view, Neli will be returned to an unjustly harsh prison sentence for being autistic and Black. 

No police officers involved in the two deadly shootings lost their jobs. The officer who shot Paul Childs was promoted. 

Unless this type of encounter has happened to you, you will not be able to understand what occurs. Dave Chappelle used such encounters and compared them to police encounters he witnessed between white friends and police in his stand up routines for a reason. Every one of us, nearly all people of color are at risk for this. But we don't have the additional challenge of possibly not being able to speak or behave in a "normal" manner at that moment when speech is being demanded by officers who may or may not have the best intentions towards us.  The Washington Post had a recent blog post that directly asked the question " Why do police see a person's disability as a provocation?"  Training doesn't cover attitudinal injustices. 

So why were Paul Childs and Stephon Watts shot by police who were trained to understand and deal with them knew them personally and had helped them in the past? Why did Neli Latson's "training" fail? Why do I think the Los Angeles approach won't work? First, police in whatever they perceive to be a crisis situation will always fall back on their basic training. So where autism training would require they calm and de-escalate the situation, police will not think in a counterintuitive fashion and they will escalate automatically based upon cues they are trained to react to with aggression in the academy. If they perceive rightly or wrongly that their target is holding anything they will treat the disabled person like a suspect and anyone near them like a hostage. In short, autism training is counterintuitive to police training.

The example given by NPR of the police training seminar for autistic students is typical of parent-driven training. It tries to train autistic consumers on parental and police terms while excluding them from decision-making agency in the creation of the training protocols and curriculum. This demands the autistic person, who may be overwhelmed and in a traumatized state, "behave appropriately" and recognize law enforcement is not a threat. Another issue here is that many autism-related 911 calls are sometimes misplaced or being made for the wrong reasons. These are medical or mental health crisis calls rather than calls for police backup. By misplaced, I mean the intent of the calls is not to help with crisis intervention, but to establish a record needed for other purposes.

Families should no longer be told by anyone that fast-tracking their grown male children into group homes can only happen if there is documented proof that the individual is a danger to himself or others because what follows is parents using 911 calls to establish a paper trail to justify sending their young men off to a group home. These actions often end in tragedy.

You can't train away racism or ableism. Understand that. What we need to look for are paths to reduce creating situations where these encounters take place meaning exploring solutions like a crisis team response group of medical, mental health, and autism professionals which would only include law enforcement (armed with a taser NOT a gun) if abuse of the disabled person or the threat of harm is truly imminent. All strategies need to be inclusive of autistic disability rights activists because they are both directly impacted by whatever training strategies, policies, or actions happen in their name, and they know what training and delivery methods will work best for their peers. 

I ceased pursuing a route of training law enforcement after the death of Robert Ethan Saylor, which happened a year after Maryland implemented the regulatory training solution as an alternative to the bill I asked to be introduced and tried to pass. It was a bitter pill.  I sat in a room full of stakeholders unable to fight back tears the year before, saying that the next time we all met it would be in the aftermath of a death because we had the chance to avert such a disaster in our state and we didn't fight for it enough. I don't know why it takes young people dying to drive legislative change on issues like this. But I realize now that such changes wouldn't have mattered and I was going in the wrong direction with this. We need to understand the hate against the black body, hate against disability, and base solutions that save lives on how to overcome these things. 

My son's life and the lives of too many others depend on us finding a better solution to this issue. Such a solution can only be arrived at by including his neurodivergent peers as stakeholders beyond parading them in training that does not reflect real-life fear in confrontations with law enforcement. Some policeman talking down to a room full of nearly grown neurodivergent men telling them "never touch a policeman's gun" when most autistic men who have been shot dead are shot from a distance not nearly close enough to see a policeman's gun, much less reach for it, shows the canyon divide that exists here. It is time we stop doing things about autistics without them. Stop doing things at them. We can't continue to bury our own sons. 

Peace. 

A Mouse that Roars - Standing in Defiance of Autism Speaks

Trauma Trigger Warning for language and ableism

On November 13, 2013, Autism Speaks will unleash the full force of its corporate lobbying budget and political action money on Washington D.C.. Autism Speaks is bombarding the District of Columbia with advertising, showering universities with research funding and overwhelming the locals with overwrought, ableist, tragedy rhetoric in order to fulfill their corporate agenda. Anyone in their way will be crushed underfoot. Any person objecting to or criticizing how they do business will be legally dealt with. Autism Speaks has repeatedly made that point, and it was again made clear when they rescinded a job offer to the mother of an autistic teen who requested reasonable accommodation to care for him during her work day (click here for details on that incident).

Tomorrow, autistic disability rights activist Lydia Brown will face down this bombastic display of corporate wealth and power and try to be heard. She will stand in defiance of Autism Speaks' three day "national policy summit" that excludes the voices of autistic adults who advocate for their peers. I am the mother of one of those "children who will need help all their lives". I am an autism mother. I stand with Lydia Brown in defiance of Autism Speaks. 

Yes, gentle people. I am asking that all of you stand with us against this frightening force lumbering forward with no interest in our families or in autistic people who are growing up and aging. Autism Speaks is inhumanely imposing their idea of what our community needs and attempting to mandate everything from how my son will be housed to funding research that has no real benefit to my son or his peers. Note that no research funding is going to technology that provides more effective augmentative alternative communication devices, when the primary challenge to autistic individuals throughout their lifespan is communication. Assistive technology solutions for autonomous living are not funded by Autism Speaks research money. Mrs. Suzanne Wright refers to autistics as "the autism crisis", dehumanizing them in a most ableist manner. She goes on to equate my son and his peers, who are still very much here as being "missing", a clear reference to the highly offensive "Ransom Notes" campaign launched by New York University discussedhere. Her exact statement in this excerpt from her blog post, entitled Autism Speaks to Washington - A Call for Actionis

"This week is the week America will fully wake up to the autism crisis

If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing."

Suzanne Wright

Her entire disturbing post can be read here.

For all those saying that Autism Speaks is understanding neurodiversity, the message is clear that at Autism Speaks, tragedy, ableism, and fear tactics are still the order of the day. My son's challenges are enough without Autism Speaks using them to push their own agenda in his name without his voice in his own affairs. He's not lost. Only Autism Speaks has lost touch with the very autistic people it professes to represent. Autism Speaks has no autistic governing representation of any significance on their board of directors. Please take the time to read Ms. Brown's latest post here.  Read about how autistic adults were treated by people who were participating in the juggernaut Autism Speaks fundraising event machine here when these young autistic activists exercised their right to protest the event. Autistic adults are our children, grown up. Do we want our children to be voiceless and passive, accepting what people who do not understand or care about them decide about their lives? Or do we want to know that they are standing together to defend their own right to speak for themselves and control as much of their own lives as they can?

Autism Speaks promotes ABA thoughtlessly, ignoring documented harmful outcomes like learned helplessness that must be dealt with years after this intervention ends. Parents and autistics of all ages who are capable of self advocacy should be given the right to choose what accommodations, supports, services and help they need. What the wealthy grandparents of an autistic child deem worked for him must not therefore be mandated for all of us. Autism families and autistic adults who don't agree with the way Autism Speaks approaches autism should not be simply subjected to their dictated national policy. No organization has the right to remove my son's right to be heard and mandate whether  and how my son is included in his school and his community.  I will not let Autism Speaks silence my son as he grows up. I will not allow Autism Speaks to usurp my voice as a parent and mandate what it thinks my son needs. Autism Speaks does not have that right.

Autism Speaks has no right to perpetuate policies that leave my son at the mercy of strangers in isolation from his own community, chemically lobotomized because their organization is uncomfortable with his apparent differences and degree of impairment. I look different from people who are white. My nose is wider. I will not narrow it. My skin is darker. I will not lighten it. I am visibly different from Mrs. Suzanne Wright. Should she then speak for what I need because she is in a position to bestow large quantities of money on those who make decisions? I thought this was the United States of America. I can speak for myself and adults with my son's degree of impairment can speak for him, until he can clearly communicate his needs himself. Only someone who knows what road my son will travel as an adult can know what he needs. Sorry that is not someone who is not autistic.

I will stand with Lydia Brown and disability and human rights activists in defiance of the mega nonprofit Autism Speaks.  For those of you who say Autism Speaks has good intentions, I respond that the road to a hellish future for my son and too many of his peers is being paved with their good intentions. We are at the crossroads of a very dangerous turn in the road of nonprofit public policy lobbying. Will this organization dictate the lives of your children? Is the future that you see for your grown son or daughter? A future of poverty and dependence on people paid to care for them after you are gone? Look further. We have the technology to vastly improve the quality of life for my son and his peers. Isn't it sad that the push for assistive technology development for wounded warriors is encouraged but that drive does not exist for our community? We must take a breath, step away from sadness and ask each day how our children will live as independent adults. 

The goal is autonomy. I want the whole American Dream for my son. I want lifetime educational access so he can continue learning until he reaches his highest potential. I want supported employment beyond him pushing a shopping cart. I want him to live on his own in clean, safe, housing beyond poverty. I want him to be an active part of his community. No revamped institutional residential housing is going to be accepted by me for my son. I have seen segregation. That didn't really work out for us people of color at all. We decided that was enough of that. How is that supposed to be ok for my disabled son?

I will be a mouse who roars. Even if I cannot be there in person, I want to be there in spirit, and so today I roar for Lydia Brown, and all those who will stand with her. A friend has a blog with a title that describes the unstoppable force headed Autism Speaks' way tomorrow.  The title is "Small But Kind of Mighty".

Lend your voices to ours, online and in person. Roar for your progeny. Demand more.

Here is my thank you to every brave soul who stands and speaks for my son. In solidarity.

Nothing About My Son Without HIm.

Two Standard Deviations from the Mean

"More. like. you.than.not!"

-Larry Bissonnette,  "Wretches & Jabberers"

I was in a meeting with my education services officer (ESO), academic adviser, and psychology professor. The ESO started off right away. "We received your test results today." "We want to rework your academic goals for the remainder of your freshman year with us accordingly." All three men were staring at me strangely. This felt like a very bad sign. 

The counselor mumbled, "it's amazing." "What is going on?" I snapped, really disturbed by now. My psych professor said, "You've tested over two standard deviations above the mean." "We think you should test out of your general educational requirements and take the 400-level psych courses we're offering next term." They went on to say I could handle an additional 3 semester hours a term with no issues. I expressed concern that I was trying to hold down a job and did not want to risk my scholarship and BASIC (what would later become Pell) Grant with a subsequent poor performance if I could not manage the additional course load. They were more confident about my ability to manage the added coursework than I was. The following semester, I was approved to take Child Psychology and Animal Behavior, senior-level psychology classes. 

What I will never forget about that incident was the three men staring the entire time we spoke. I felt like a zoo exhibit throughout the interview. They stared as if they suddenly realized I was a creature from another solar system. 

I was 18. I learned a new, painful lesson; how people react emotionally when they learn a person is more than two standard deviations above a western societal construct called 'average intelligence.' Measured by a testing instrument with eugenic origins. I learned how one newly aquired societal label changed how the entire world views a person. I was never treated in the same causally friendly way by faculty and staff again.

Twenty-eight years later, I sat in a pediatric neurologist's office as he explained our son's comprehensive evaluation results in a flat, cold voice. All I could remember were groups of words slapping consciousness painfully:  global developmental delays, nonspeaking autism, intellectual disability so 'severe' there was no measurable baseline. He threw out a rough estimate of 'mental age.' I thought, here it is. A deadly new label. "is he saying my baby is at least two standard deviations below their idea of an intelligence mean?" 

We were told there was nothing we could do. The future was grim for our son. Over two standard deviations from the mean. Now, why was that familiar? At that moment, I couldn't catch the thought thread and reel in why it might be important. 

Mu's father is a brilliant man. The term 'genius' has been used by those who know the minutiae of his creations. The test of eugenic origins has not been used to add a number to that label. We had plans for our son. Turkish math courses, a coding school, and robot building. The day we got that diagnosis, we began thinking after we moved past tears and shock. We called his adult sister. She stood in the middle of her workplace, crying, and all her coworkers rushed to her side, knowing something was wrong but not understanding why silent tears were flowing. Our family's collective ability to think and think well helped us push past the trauma of how this diagnosis was delivered to our son and us. We held hands with our son and spoke together softly, saying we had to regroup. Now the plan was to show our son how much we loved him. And to find out how our son could manage on his own. 

The new question was, could someone carrying the label of intellectual disability more than two standard deviations below this biased intelligence mean command his own life? Had anyone with our son's diagnosis accomplished this? Thanks to my husband, we approached that question as a series of engineering problems. We have been navigating and recalculating solution arrays on the fly ever since. 

The connecting thread of experience caught me after an incident at the playground with my son. Someone said something awful about him right to his face. I corrected them. I told them he understood exactly what they said. I did the "what is autism" speech. The child, much older than my son, apologized to me. "No," I said. "Apologize to him." A hesitant apology came. The playground had become an unwelcome place for us again. As I settled my boy in his adaptive stroller and turned us toward home, the silent, persistent staring followed, and I felt that sense of vertigo that sometimes accompanies flashbacks.  

The realization came, and that thread of memory yanked itself to our moment on the playground. I was back in time looking at three men who had met me a lifetime ago, who once spoke with relaxed ease to me when exchanging social pleasantries in the school halls. Looking at how they changed when they held in their hands the knowledge that the same student they conversed with and encouraged was labeled more than two standard deviations from the biased 'intelligence' mean. And the looks were precisely the same. It was the same type of horrible, distancing stare. Like the child bully and her friends at the playground, staring as if my son could not be like them.

My son and I are equidistant from the mean in society's perceptions of measured intelligence. We are both somewhere beyond two standard deviations from that fabricated mean. Neither of us is labeled mean/typical/average intelligence. We are both neurodivergent. Those two lines eventually meet, and the moment of that intersectional meeting point makes us oddly equal.

That additional strange fact, when linked to all the knotted ties that bind me to our son, makes blaming him for being different impossible. I can't play that mind game some other parents play when they hear their offspring are autistic. He is not different. Not from the wrong planet. He is very much my son. 

I decided genuine respect and acceptance meant understanding that part of those unique characteristics that make our son diverse are from the same genetic soup that floated together to create us, his parents. I understood that day on the way back from that playground that our equidistance from the mean was a sign I needed to move beyond simply accepting him and presume his competence. As my husband put it, the problem was not our son. It was an environment not engineered to accommodate his needs. The point of intersection was love. That love moved us through time and space to this moment, when our son, despite diagnoses, forecasts of doom, and failed attempts to use intelligence tools that have no way of measuring his intelligence or his value as a human being to chain him to series of labels, has thrived.

More.like.me.than.not

Written Testimony Before the U.S. House Committee on Oversight & Government Reform

U.S. HouseCommittee on Oversight & Government Reform

TESTIMONY OF MRS. KERIMA CEVIK, MOTHER OF MUSTAFA NURI CEVIK

Regarding  The Federal Response To Rising Rates ofAutism

November 30, 2012

Main Concerns:

• Re-aligning funding to remove the racial, ethnic, gender and income disparities in access to accurate diagnosis, lifespan supports and services
•  Distributing research funding to increase research in assistive technology supports, quality of service provision, and directly addressing the needs of Autistic individuals and care providing families throughout their lifespan
• The importance of the Olmstead decision for my son and those like him
• Medicaid will be important to my son; continued federal governance is needed

Thank you, Chairman Issa, Ranking Member Cummings and esteemed Members of the Committee, for allowing me to share my family’s concerns and Autism experiences with you.

My name is Kerima Cevik.  I am a resident of Prince George’s County, Maryland and mother to Mustafa Cevik, affectionately known as Mumu, a wonderful 10-year-old boy with multiple intellectual disabilities. When our son was four, we took him to the Kennedy Krieger Institute for evaluation. After three years and four pediatricians telling us “let’s wait and see, maybe he’ll speak” our son was given a grim diagnosis that included the labels “low functioning” and “nonverbal Autism”.  We were told that our son would never speak; he’d never improve, that he would always need help with all his basic needs.  We were also told there was nothing we could do to improve our son’s situation. Then we were left to absorb this harsh reality about our child.

Since his diagnosis, we have seen our boy repeatedly surprise the experts. We videotaped our child doing things we were told he did not have the cognition to do. The team at Kennedy Krieger realized our son was capable of learning and retaining what he learned. He was in fact, not as he appeared. We were told we were at the bottom of the developmental mountain with our son. But he showed them differently. What we’ve learned about our son is that he has the ability to achieve whatever he goal he sets for himself despite the severity of his disabilities. And each developmental roadblock he passes drives us to fight that much harder for his right to respect, acceptance, literacy, and his right to gain the intensive supports he needs to help him be as independent as possible throughout his lifespan.

Our son is very brave. He has survived abuse and neglect in school. He steps outside each day to a world where he is gaped at and made the object of ridicule. I am a woman of color, what our government has labeled “Black of Hispanic origin”. So I know what discrimination is. I cannot explain why this hate exists to my son. He senses it however. He faces racism and ableism patient and unfazed, because he knows he is loved and accepted at home. He has made great strides despite not being allowed to benefit from the treatments and therapies that are supposed to be available at his school and in his community.

My son’s story is not unusual for special needs children in families with racial and ethnic differences. So I was disappointed when I heard a medical professional testifying that late diagnosis and disparity of care were the result of episodic medical visits to pediatricians by minority families.  Racial bias in health care and education is well known and I expected that to be addressed by witnesses at this hearing and it was not. I am respectfully requesting the committee invite witnesses from a broad demographic, who might be able to give testimony about the experience of racial, ethnic, and gender differences and how this directly impacts supports and services for Autistic individuals who are also minorities or women.

It angered me to hear some of the testimony at the hearing because our son is our pride and joy. He is an amazing human being. His strength of will alone is humbling. Is it easy to not work outside the home in order to teach and care for him? It is a great deal easier than what my son deals with each day of his existence. And yet he gets up and jumps into life with all the joy the rest of us may sometimes lack. He deserves better than being called a burden.  He is not a “damaged child”. Autism did not take our son away; our son is Autistic and is learning to meet and master his challenges. I cannot get up in the morning and remove my dark skin; I expect the world to accept me as I am, because my skin looks good on me. While the devastating historical attacks on the self-image of dark skinned people have created a market for skin-lightening treatments, “curing” my dark skin is not the answer. Nor can my son’s brain be removed from his body; it is part of who he is. The answer then, is to accept him as he is, and help him meet the challenges his neurology might present him. The Autistic ability to persevere is giving him the will to work to master skills many of us take for granted. And if funding is balanced and distributed in such a way that my son and all those waiting for services are given the supports and accommodation needed to be fully contributing members of society they will not disappoint. Our son’s continuing story is proof that motivation, will, and courage are the ingredients of successful people.

Funding for Services and Supports

Research is a fine thing and I support it; but our son and his peers will not benefit from any research currently being done because this research is not in areas such as better learning approaches, life skill acquisition, Autism specific healthcare and more efficient and affordable assistive technology. There is very little research on the health profiles of individuals on the Autism spectrum. And what caused my son’s brain to be wired differently and whose fault it may be is probably the least urgent of the questions he needs answered. Autism’s primary challenge is communication, and yet no research dollars are invested in assistive technology and education strategies to maximize literacy in nonspeaking Autistics. I fought to get a single assistive technology evaluation and this evaluation resulted in the professional opinion that our son could use an iPad and TouchChat App as an affordable speech device. He is learning to use it now. This single event could change the entire quality of our son’s life. We must somehow afford a second iPad device and the software to have on hand as a backup communication device should his present device be damaged. Families are borrowing money, fundraising, trying to do anything they can to get the equipment they need for their loved ones to communicate. Imagine how we feel when we are told that funding for iPads and iPod as AAC devices is not approved but funding for a $10,000 dynavox device and the requisite supports and equipment needed to make using it feasible is. If the funding spent on awareness campaigns was spent on iPads the impact on the %25 of the Autistic population that needs communication support and literacy would be life changing. Where funding goes and how it is used in our community concerns us.

Because our son is learning to use an iPad speech device, someday he might be able to testify about his needs directly before your committee. Many older children and adults on the Autism spectrum who do not have verbal speech are erroneously labeled “low functioning” and thought to be incapable of learning. We were told our son would always have the mental age of a 6 month old. His life is changing because we ceased listening to what he could not do and began focusing on what he could.  Shouldn’t more than 2% of funding go to helping our children and Adults on the spectrum become more independent? Much of the aggression associated with some Autistic nonspeaking children and Adults resolves itself when these individuals are given a means to communicate. Yet research is lacking on Autism and literacy.

The Olmstead Decision

When our son was first diagnosed, we were told that at some near future date, we would be placing him in an institution. If you are a parent, probably one of the most horrific things you could be told is that it might be a good idea to institutionalize your toddler. I am so glad we did not heed that advice but instead sought support from the Kennedy Krieger Institute and other resources to help our son. He has made greater improvement at home and in his community. While many of his peers are on medications to reduce anxiety and regulate sleep, he is medication free and is receiving professional help to manage the overwhelming sensory input he deals with daily without medication. Unfortunately life in institutions often came with medication used for chemical restraint, and for many of developmentally disabled children heartbreaking abuse and neglect. Funding for community-based care allows families like ours to be educated care providers and our children to live in whatever degree of independence they can. Whenever a vulnerable population is made to be dependent on an institutional style care setting the risk rises for abuse. The Olmstead decision has saved the lives of hundreds of disabled children and adults and is creating environments that allow us to see our children in our schools and communities and not shut away and harmed. The benefit of my son being out and about in his wheelchair is that his is accepted in his community. Our son is an active part of his community everywhere typical children are. The only way to end the maltreatment of developmentally disabled children and adults is to end segregating them. The idea of our son, after having come so far, being forced to live in prison-like conditions because he is disabled is horrific to me. The federal role in assuring that our son and all those like him are not imprisoned in the guise of providing housing supports because they are in the profoundly disabled category is critical.

A final concern about Medicaid Funding

Although our son is not currently a Medicaid recipient, his degree of disability dictates that at some future date he will be. Many of his disabled peers are able to have the critical medical support services they need through Medicaid. Please do not reduce the role of the Federal government in Medicaid services.

Thank you for your time and consideration.

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

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347 U.S. 483

Brown v. Board of Education of Topeka

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

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

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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.

Ruby Bridges, Norman Rockwell, Self-Advocacy and Allies

Adapted from My Presentation for Autistic Empowerment, The Civil Rights Model

We parents are inoculated with fear and ableism from the moment we hear the diagnosis of autism, thanks to the way most professionals present this news to us. Probably the biggest detriment to autism parent advocacy has been the inability to move out of "reactive advocacy," a type of guilt-driven ripple effect of all the fears and suppositions indoctrinated into us on the day our children are diagnosed and at every instant, our divergent children's needs intersect with the systems meant to try and meet them. This is the legacy of the culture of hopelessness and learned helplessness that goes hand in hand with the medical model of autism. This mental state is damaging to us, our families, and our divergent children. It is also emotionally unsustainable. In order to be successful parent advocates to our children, we must not usurp their civil rights ourselves. We must assist them to self-advocate and fight for them to gain a seat at any table where decisions are being made about them.

For those who say that young neurodivergent children like my son, who is deeply autistic and nonspeaking, are incapable of self-advocacy and self-determination, I quote Kassiane Sibley, who says, “ advocacy begins with No!” “No!” does not require oral language. It can be stated in action and communicated non-verbally. If my being an autistic parent and saying my son is quite neurodivergent, but I must presume he is competent to seem incongruous, I can say that it is not.

I hold these views naturally. I am labeled as a member of five minority groups. My little brother, my older sister, and I were the first three Black students to integrate an all-white elementary school in Illinois. We suffered hardship and maltreatment at a time and circumstance when racist attempts to stop the desegregation of schools continued. But we stood our ground. To stand your ground as a child is hard. It is a lonely business. But it makes you a stronger person. I want my son to stand his ground; therefore, he must see his mother standing up for him, standing by him, and by these actions, I must make it clear I respect him. I want him to instinctively self-advocate before all else. I want him to know and remember children who had to self-advocate and rose to the challenge. Children like  Ruby Bridges.

U.S. Marshals escort Ruby Bridges from school photo credit
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In 1960, when Ruby Bridges was 6 years old, her parents responded to a call from the National Association for the Advancement of Colored People (NAACP) and volunteered her to participate in the integration of the New Orleans School system. She is known as the first African-American child to attend an all-white elementary school in the South. She attended William Frantz Elementary School in New Orleans. When Ruby Bridges walked to school each day, she was pelted with rotten tomatoes; she walked past racial slurs and foul language painted in graffiti on the walls around her; crowds shrieked threats to torture and kill her and her family. Armed federal marshals, at the order of President Eisenhower, brought Ruby to and from school each day. Her mother could not take this walk past a certain point with Ruby. She had to do it alone. She kept her head up and did not cry. At six, she was a self-advocate of circumstance, as I was in my time and my son is now. Hearing of Ruby's courage in doing this, Norman Rockwell made a life-changing decision. He did not renew his contract with the Saturday Evening Post. Instead, he signed a contract with Look magazine, which allowed him the freedom to paint whatever he wished, and he began with this painting, which tells the story of Ruby Bridges and her brave walks to school. His painting, entitled, The Problem We All Live With, became an iconic image of the civil rights movement in the United States. This painting is the symbol of Rockwell beginning to express his views through his art, after which he began civil rights and justice themes. Norman Rockwell crossed a line. He began to use his position of privilege and his artistic talent to support the cause of a group he was not a member of but whose efforts toward social justice he supported. He took steps towards becoming a civil rights ally. What do autistic disability rights advocates mean when they say the word ally? I have a brief checklist, adapted from the original by Dr. John Raible, that might give some insight into what it does and doesn’t mean to be an ally. I have made some modifications so the list might be used to clarify what an anti-ableist ally is.

I envision the future of autism parent advocacy as the continuing process of acceptance of our own children as they are, preparing them to be self-advocates who can be as strong as Ruby Bridges was and continues to be. I hope to see parents leaving the realm of fear-based reactive advocacy and joining neurodivergent advocates to produce inclusive, proactive ones. Collaborative change that truly benefits autistic people throughout their lifespan. I see the brave autistic civil rights activists of today leading the way for our generation of children’s voices to be heard, and I am relieved that someone like my son echoes his voice. I am proud to stand with him in this fight and know what my role is in it.

"Nothing about my son without my son"