By Casey Bryn McCarthy, MS, CCC-SLP (she/ her/ hers)
Content Warning: ableism, sexual/ physical/ emotional abuse of children and adults, institutional abuse, suicide, self-injury.

In 1959, the United Nations General Assembly adopted the Declaration of the Rights of the Child, which is an international agreement that established that all children have the right to education, play, a supportive environment, and health care, as well as other rights (some of which will be discussed later in this post). The current version, the Convention on the Rights of the Child, was last updated in 2015. The U.S., along with the rest of the world, has signed the agreement, although the U.S. is the only country in the world that hasn’t ratified it.

Article 2 of the Convention established that these rights have to be applied to all children without discrimination based on “race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status.”
Even though the Convention specifies that these rights apply equally to children with disabilities, many of these rights are being routinely denied to autistic children who receive special education services in the United States (and many other countries as well).

“…without discrimination based on “race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status.”

Communication Rights

“The child who is capable of forming [their] own views… [has] the right to express those views freely in all matters affecting the child.”

(UNICEF. Convention on the Rights of the Child. Article 12)

Autistic children with complex communication needs are frequently not given access to the augmentative communication supports necessary to enable them to fully express their opinions, and the ways in which they do express their opinions are routinely dismissed and/ or ignored entirely. If you’re sure that you and the rest of your team never fail to dismiss, ignore, or fail to ask the opinions of autistic kids you work with, ask yourself the following questions:

Do you ask before you grab your clients?
Children’s rights include body autonomy

And those are just decisions related to basic human rights and needs. Children also have the right to participate in their own educational decisions.

A lot of professionals, when realizing that they don’t do these things, will immediately become defensive. They might state that the children they work with aren’t capable of understanding or giving their opinions on these kinds of decisions. But even if you believe disabled students can’t participate in things like IEP goals or placement decisions (which they can- but we’ll save that discussion for a different post), I am confident that you’ve seen them express opinions on which adults they want help from, how they want to play/ what they want to play with, what or when they want to eat or drink, how they want to move their bodies, and what makes them feel better when they’re upset. The main barrier here is that many of us have been trained to either ignore, redirect, or “shape” children’s communication around these topics.

“The child shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice.”

UNICEF. Convention on the Rights of the Child. Article 13.
Don’t make children earn food or breaks. It’s dehumanizing.

Often, professionals object to the methods through which children are communicating (such as through physical communication, vocalizations, crying, gestures, body movements, etc.), or do not attend sufficiently to the child or elicit enough information from those who know them well to read their communication signals, and/ or require that responses be given in a modality or form that the child cannot use for effective independent communication. For example, adults might state that they do let the child choose what to eat or play with or when they need a break, but they only do so if the child says, “I want ___ please” on demand.  

Professionals may fail to present access to sufficient robust augmentative communication and aided language input or believe that children’s responses aren’t “functional” or “intentional.” They might remove children’s communication devices if they consider them to be using them to stim, if they’re repeating the same message, if they’re off-topic if they’re being “disruptive,” or because of behavioral concerns. They might state that the child doesn’t know how to use the device, without providing the form of support that research shows is necessary for them to learn to use it (aided language input without pressure, constant access to the device, the opportunity to babble, and explore, communication partners consistently responding to their messages). They might require children to move through “phases” (such as using the PECS protocol) or demonstrate “prerequisites” before providing them with access to the vocabulary that they need- and often they do so through communication modalities that fundamentally do not work for the child (e.g., handing pictures to a communication partner does not work for many children who do succeed with a communication device or pointing to pictures on a low-tech board).

Oftentimes, information also isn’t presented in ways that help children with receptive language or cognitive disabilities to understand. We can present all information in multiple modalities- and we do not need to “fade” things like visual supports, hands-on activities, or sensory regulation strategies that help children to attend and comprehend once they demonstrate success.

The Universal Design for Learning (UDL) framework is designed around offering every student consistent access to “multiple means of engagement,” “multiple means of representation,” and “multiple means of expression.” (CAST (2018). Universal Design for Learning Guidelines version 2.2. Retrieved from http://udlguidelines.cast.org). UDL shows us that we CAN provide opportunities for every student to learn, communicate, and understand in the ways that work best for them- and to decide for themselves when different modalities and activities work best at different times. Our focus should be on ensuring that children can access meaningful learning opportunities- not requiring them to learn in the way that we consider most “appropriate,” “typical,” or convenient.

Dignity and Access

“A mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community.”

(UNICEF. Convention on the Rights of the Child. Article 23).

Often, school teams attempt to “facilitate the child’s active participation in the community” by focusing on “life skills” and/ or “job skills” such as cleaning, occasionally cooking, laundry, shredding paper, making purchases inside of stores, “community sign” recognition, and identification of coins and bills.

He has the right to an education beyond learning to sweep

Here is the problem: all skills are life skills. And no single specific set of “skills” is necessary for dignity and community participation. For example, it’s perfectly possible to live independently in the community without the ability to vacuum, cook, or do laundry. Some individuals will have insurance-funded personal care attendants, some will live with family members or friends who can assist them with these tasks, and some may live with roommates who will take on these tasks while the individual in question takes on different household responsibilities or pays a different share of the rent to compensate. Some will be able to hire services (e.g., laundry pick-up/ delivery, cleaning services) and/ or pay for the delivery of food, personal care items, and anything they need to shop for.

This may not constitute many people’s definition of self-reliance, but here’s the thing: these are accommodations that many of us, both neurodivergent and neurotypical, make for ourselves as adults. In many households, not every member independently cooks or does laundry or performs all household cleaning tasks. Maybe one person is responsible for taking out the trash and sweeping, and a different person typically handles meal preparation. Maybe one person handles all physical household tasks, and another person is in charge of planning and scheduling family responsibilities and appointments. Many of us prefer to shop online rather than in person. At this point, likely a majority of us rarely handle cash. You may think of self-reliance as not needing help from others, but a more empowering way to think of it is as “self-determination.” You don’t have to do everything independently in order to be self-reliant. None of us do- unless you’re sewing all of your own clothes, farming all of your own food, building your own houses, working as the sole employee of your own private practice, etc. The fact that some neurodivergent people may need assistance with *different* skills than some neurotypical people does not, in and of itself, make them less self-reliant.

That doesn’t mean that many of these skills can’t be valuable, meaningful, and empowering. But there are a lot of other skills that support community participation and self-determination, and many of these skills are being taught to children and adolescents in general education but not many students in special education. For example:

Literacy: Worldwide, adult literacy rates are the primary measure used to assess access to quality education for specific countries and demographic groups. Students in special education are often working on handwriting their names, copying others’ written words and sentences, matching letters, and receptive identification of “functional” sight words for their entire lives, none of which will grant them much in the way of community independence in adulthood. Meanwhile, meaningful decoding instruction and word study, as well as access to audiobooks and instruction in text-to-speech and speech-to-text technologies and word prediction (and Braille, for those with low vision/ blindness), all of which would grant them immeasurable opportunities in the areas of education, information access, employment, leisure, household management, independence in navigating medical systems and self-administering their own medications, community safety, cultural and artistic participation, self-expression, social-communication, etc., are routinely denied to them.

Math: Students in special education often work on coin identification, discrete trial-based receptive and expressive identification of numbers or symbols, and numerical sorting/ matching tasks. They often aren’t taught things like calculator use for basic operations and percentages, reading graphs, creating spreadsheets, estimating basic distances, basic familiarity with measurements, concepts relating to time (not necessarily reading analog clocks, which is rarely necessary, but calculating the time until something happens, etc.) all of which would support independence in household and community responsibilities such as budgeting, taxes, cooking, purchasing clothing, tipping, scheduling, and driving. Students in sub-separate classrooms are almost never taught higher-level formal math skills such as geometry, algebra, calculus, etc., which support access to post-secondary education and job opportunities.

Skills related to meaningful communication/ self-advocacy and self-determined regulation strategies are also essential “life skills” that are inadequately supported in many special education classrooms- a deeper discussion of this is coming in a separate post.

Culture and Identity

“The education of the child shall be directed to:

a) The development of the child’s personality, talents and mental and physical abilities to their fullest potential”

b) The development of respect for human rights and fundamental freedoms

c) The development of respect for… [their] own cultural identity, language and values…”

UNICEF. Convention on the Rights of the Child. Article 29.

Information about basic human rights and about cultures, identities, privilege, marginalization, and oppression is very rarely emphasized, if discussed at all, in substantially separate special education settings. All children deserve and can be given access to this information. It is often assumed that the autistic children “don’t understand” concepts such as race, gender identity, sexual orientation, culture- or even disability or neurotype. Most education provided about cultural identities/ values is provided in a decontextualized manner (e.g., having students recite the pledge of allegiance, participating in holiday-themed crafts) or is presented from a “be nice to everyone, we are all the same” perspective rather than delving into the key concepts of respect for other cultures, allyship to marginalized groups/ self-advocacy as a member of a marginalized group, and developing an internal concept of one’s own identity.

Autistic students are often marginalized just for being autistic, very frequently by their own teachers and therapists.


Many additionally experience discrimination and marginalization based on race, culture, and disabilities other than autism. Many are not given access to opportunities to communicate, express, or openly explore their sexual orientations or gender identities or gain access to communication with or education about others who share those identities. Non-speaking children whose families speak languages other than English often aren’t given access to augmentative communication systems in the languages spoken in their homes. There are still professionals who discourage parents from even speaking their home languages to their children, particularly when their children have disabilities, despite the fact that all evidence shows that maintaining/ supporting all home languages is essential for language development and academic progress and that exposure to multiple languages never harms language development regardless of disability. Autistic children with high support needs who are English Language Learners are also rarely given access to English Language Learner services or to instruction in their home languages- their difficulty understanding or speaking English is often assumed to be just due to their being autistic.

Autistic children in schools aren’t typically encouraged to be who they are or to develop their own talents and express their own personalities. They are regularly taught that their communication, their emotions, their sensory needs, their regulation strategies, their social interactions, and their play are wrong and need to be changed or fixed. They aren’t routinely given information about neurodiversity or access to autistic adults or to opportunities to participate in autistic community spaces. Their teachers and therapists are rarely educated about norms and values within the autistic community. Their strengths (e.g., knowledge about/ engagement with a topic of special interest, seeking out movement activities to regulate themselves, engaging with other autistic people, memorizing information or language from TV) are often ignored or reframed as deficits or as “non-functional.”

Play

“Recognize the right of the child to rest and leisure, to engage in play and recreational activities appropriate to the age of the child and to participate freely in cultural life and the arts.”

UNICEF. Convention on the Rights of the Child. Article 31.

In order to meet the definition of play, an activity must be:

Nearly all reputable organizations and researchers within the field of Early Childhood Education within the U.S., as well as many other English-speaking countries (including Australia, Canada, England, Wales, and Scotland, among other countries), define play as requiring those three criteria (e.g., for resources within the U.S., see the National Association for the Education of Young Children). Some definitions have expanded on this to add a 4th criterion: the activity must be “spontaneous and pleasurable.” (Brockman, Fox & Jago, 2011). Play is the primary activity through which children are able to effectively access learning until at least the age of 7.

Autistic play is REAL PLAY

Within the special education system, including within Early Intervention and preschool classrooms, it is often said that autistic children “don’t know how to play.” Because of this, many therapists and educators focus on teaching autistic children to interact with toys in pre-determined, adult-directed ways. Often these professionals are aware that the child does not want to engage with the particular toy or activity or wants to engage with it in a different way, but the adults feel that it is important to the child’s development that they teach the child to play “functionally.” If a child does not want to engage in the activity, often they will be given extrinsic motivation in the form of rewards (e.g., “if you finish putting all of the shapes in the shape sorter, you can go on the swing”) or punishments. They may even be forced to participate in activities hand-over-hand (e.g., completing puzzles and craft projects).

Therapist-led “play-based” intervention meets none of the criteria to be defined as “play”.

The use of items sold as children’s toys does not make something play any more than using a broom to bang on the ceiling qualifies as “cleaning” or riding on a swing made from recycled car tires qualifies as “driving.”

Conversely, the things that many autistic children who are not playing in “expected” ways (i.e., the ways in which neurotypical adults believe they should be playing) choose to do often DO meet the definition of play. A child who is lining up toy cars in a row of their own accord is doing something that is freely chosen, personally directed, and intrinsically motivating, and many autistic children seem to find the activity pleasurable and engage in it spontaneously. A child who is, by their own choice, walking around in circles reciting lines from a favorite TV show, is also engaging in play. So too are children who are waving objects in front of their faces, jumping up and down, singing to themselves, dumping objects out of containers (and possibly putting them back in), and taking things apart. Autistic children learn from their play just like neurotypical children do. But in order to do this, we have to actually let them play, instead of assuming that what they’re doing isn’t “real” play and redirecting them to do something we’ve decided is somehow better.

Autistic Play is Appropriate Play!

Intrinsically motivating (i.e., “preferred”) activities and objects, as well as rest/ break times, are often withheld from autistic children and used to reward compliance/ engagement in adult-directed tasks. They are not treated as something that the children have a fundamental human right to access. Even when children go home, professionals will often advise parents and caregivers to require their child to ask for everything in a predetermined way (using speech, PECS ® , or a communication device, often with the phrase “I want ___”) before providing it to them, even if they already know what the child wants. Parents are openly criticized by school teams if they don’t do this (e.g., “the parents don’t place expectations on them at home,” “they don’t have structure at home,” “the parents interpret what they want and give it to them without making them work for it” are all often stated disparagingly by school staff members). Requiring a particular form of communication in this way creates substantial barriers to children’s ability to access play and self-regulation strategies, particularly because many people, especially neurodivergent people, cannot access many of their typical communication strategies during times when they are dysregulated. Again, the ability to engage in activities that they enjoy and/ or that help them to regulate themselves is a basic right, not a privilege that should be extended only once they comply with adult demands.

Protection from Abuse and Harm

“Protect the child from all forms of sexual exploitation and sexual abuse.

UNICEF. Convention on the Rights of the Child. Article 34

“No child shall be subjected to torture or other cruel, inhuman or degrading treatment or punishment.”

UNICEF. Convention on the Rights of the Child. Article 37

“Ensure that school discipline is administered in a manner consistent with the child’s human dignity.”

UNICEF. Convention on the Rights of the Child. Article 28

Autistic children and adults, as well as disabled children and adults in general, are at dramatically increased risk of abuse, assault, violence, bullying, and neglect.

Professionals paid to work with autistic individuals and those with developmental disabilities are the most frequent perpetrators of physical and sexual abuse against them.

In addition, schools and classrooms for disabled children, especially autistic children, frequently utilize punishments that are “cruel, inhuman, or degrading” and not “consistent with the child’s human dignity.” Until March of 2020, it was legal for schools in the US to use electric shocks as punishment for autistic children, and one school in Massachusetts routinely did so. The Judge Rotenburg Educational Center continues to fight this ruling to this day.

Across the country, autistic children and other disabled children are punished through physical restraints (including prone restraints, which can be fatal) and isolation/ seclusion. Some schools have what essentially amount to closets with padded walls in which autistic children are placed when they become dysregulated, and which they are not let out of until they appear “calm” or “compliant.” Students are also routinely punished by “planned ignoring,” which can have profound psychological consequences and is a form of emotional abuse. Humiliation, taunting, shouting, removal of augmentative communication devices and other assistive technology, withholding access to sensory supports and emotionally-regulating objects, etc. are also very common.

Autistic children are often segregated from other students, are more likely to have complex communication needs that make it difficult for them to report abuse, are routinely, systematically taught to “comply” with adult demands, and are ignored, physically restrained, or isolated when they protest or express distress. Because of this, prolonged, severe abuse of these students often goes undetected, unreported, and unaddressed throughout their lives.

Mental Health Supports

“Take all appropriate measures to promote physical and psychological recovery and social reintegration of a child victim of: any form of neglect, exploitation, or abuse; torture or any other form of cruel, inhuman or degrading treatment or punishment; or armed conflicts. Such recovery and reintegration shall take place in an environment which fosters the health, self-respect and dignity of the child.”

UNICEF. Convention on the Rights of the Child. Article 39.

Autistic children with complex communication needs, or those who are intellectually disabled, are very rarely provided with access to mental health supports or trauma-informed services. Often, they receive behavioral interventions intended to eliminate the ways in which they express distress, dysregulation, and physiological panic related to their experiences of trauma, without receiving any services intended to actually determine the underlying cause, eliminate abuse and ongoing trauma triggers, and help them develop additional coping and regulation strategies. Abuse, neglect, and trauma history are often not discussed as contributing factors when autistic children have frequent meltdowns, self-injury, and externalizing responses in which others are injured, even when their trauma history is documented and the professionals discussing them are aware of it. Distress signs in autistic children are routinely viewed as maladaptive behaviors related to being autistic rather than signs that the child is experiencing or has experienced trauma, is having difficulty coping and needs support.

Reduced access to mental health services for autistic children is even more disturbing when you consider the fact that autistic individuals experience suicidal ideations and attempt/ commit suicide at much higher rates than the general population.

Trauma-informed therapists understand that behavior is communication! Don’t ‘extinguish’ the behavior, explore the reasons for the behavior and improve the environment. Autistic children are not just a bunch of behaviors to be manipulated.

Moving Forward

Children’s Rights include Autistic and other Disabled Children

Nationally and internationally, our education system is failing autistic and other disabled children on a fundamental level. Disregard for the human rights of autistic children, and the belief that they are so fundamentally different from other children that they don’t have the same rights, have become cultural norms within many professional and educational spaces. Often, teachers, therapists, and other professionals working with autistic students don’t even realize the ways in which their treatment of their students is dehumanizing because it is what they have seen from the individuals around them and those who trained them. Many have never spoken to or read information created by autistic adults involved in the neurodiversity movement or have engaged with content created by this population briefly, but dismissed it as irrelevant to the students that they work with.

We can do better, but in order to do so, we have to understand the ways in which we’re currently causing harm. We have to listen openly and respectfully to those who have been harmed by us. We have to recognize that professional training and work experience and research evidence, all of which are routinely conducted and interpreted from within a deeply ableist system, cannot overrule the lived experiences of an entire community of marginalized people who are speaking out against many of our current educational and therapy practices.

Read through your students’ IEPs, their behavior plans, their lesson and therapy plans. Read through the notes you send home to their families and the evaluation reports and progress reports that you’ve written about them. If you can, get permission from your students and their families to record a few therapy sessions or classroom lessons with your students, and listen back to the ways you speak to them. Listen to the words you and your colleagues use to describe autistic students, and compare that language to the language you’d use to describe your own neurotypical children or the neurotypical children of your loved ones. Listen to whether or not you are speaking negatively about your non-speaking students or the families right in front of them, in ways you wouldn’t dream of doing if they could repeat back what you had said about them. Observe the ways in which you touch your students and whether you are asking them for consent. Imagine yourself in their place (would that involve someone holding your hands and forcing you to do repetitive, uninteresting tasks for hours every day? Would you “comply” if it did)? Watch how you respond to your students when they cry, and compare it to how you would respond to a loved one who was crying, or how you’d like someone to respond to you if you were crying. Think about what your concerns would be and what supports you’d seek out if you found out that your own teenager was cutting themself, and compare that to how you interact with your autistic students who engage in self-injury.

Autistic and other disabled children are human children– so therapists need to respect their human rights.


References
UNICEF. Convention on the Rights of the Child
CAST (2018). Universal Design for Learning Guidelines version 2.2.
Science Daily- Autism Abuse Rate
Frontiers in Psychiatry- Victimizations and Perpetration Experiences of Adults with Autism
Assistiveware- Reduce Vulnerability for Nonspeaking People
Disability Justice- Justice Denied- Abuse and Exploitation
WHO- Violence Against Adults and Children with Disabilities
Spectrum News- How Abuse Mars the Lives of Autistic People


Casey Bryn McCarthy, MS, CCC-SLP (she/ her/ hers)

About the author: Casey Bryn McCarthy, MS, CCC-SLP (she/ her/ hers) serves on the Therapist Neurodiversity Collective’s Therapy Advisory Board. Casey is a queer, autistic, and multiply neurodivergent speech-language pathologist specializing in augmentative communication (AAC), as well as assistive technology for curriculum access, play and leisure, vocational access, and self-care. Prior to completing her Master’s in Speech-Language Pathology, Casey obtained a Bachelor’s in Developmental Psychology with a minor in Early Childhood Education while obtaining work experience with infants and children aged 8 weeks through 13-years-old. Casey now works with infants through geriatric populations in homes, childcare, schools, pediatric nursing homes, and adult day programs. She provides CEU presentations to other professionals and the general public, school team in-service trainings, and lectures to students in graduate programs. She has a special interest in the provision of AAC and AT to infants and very young children with complex communication and access needs.
Casey may be followed at:
In Other Words: https://inotherwordsaac.com/
Learn Their Pronouns: https://learntheirpronouns.com/



One Response

  1. Casey! Great article, very thought provoking. Your autism explains why you kept that child’s file for 2 months when we were trying to write the report after the evaluation. I wish you had told us, my son also has autism. When he was younger he used to tell me that he wished he had a more severe disability so he wouldn’t have to be aware of the fact that he had a disorder. My main hope for him growing up is that he keeps his self esteem no matter what happens to him. Recently at his Bat Mitzvah he was open about his anxiety during the pandemic and people recently appreciated that. I hope he never feels he has to hide his individual differences from others. You’re right, a lot of times we work to help kids fit into a world that isn’t necessarily that great.

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