I see y’all out there. Parents trying to do your very best for your Autistic kids. You talk about how much ABA has helped your child and how you don’t know what you would have done without it. You say that you couldn’t possibly have done what your BCBA or RBT has accomplished. You truly believe that you, the person who knows your child the very best, don’t have what it takes to give your child the world. But, oh Love, you do! You honestly do.
The ABA industry systematically chips away at our confidence in our own instincts and abilities. With those scary prognoses and extensive treatment plans, how could we ever give our child what ABA can? From that perspective, it’s true. We don’t have the skill set to do what a BCBA or an RBT can do. For some parents, that will mean putting a child into ABA and trusting professionals with their care. For others, it will mean getting trained yourself so that you too can use behaviorism to manage your child’s actions. There’s another choice though. A less expensive and time consuming choice. A better choice.
A few days ago, occupational therapist, Greg Santucci, wrote about a fundamental flaw in the concept of ABA, one that we parents need to understand:
So, if the antecedent doesn’t really happen right before a behavior occurs, but rather results from a combination of factors that can stretch back days or even years, how could a BCBA or an RBT possibly recognize what’s wrong? How could they possibly know everything you know? You, Love. You saw what happened when your child’s favorite toy broke last week. You offered comfort and validation, but you knew your child felt grief, so you gave them space to mourn. Then, over the weekend, you saw your child’s energy revving up and you knew they needed to go outside, but rain changed your plans. So, you did your best to help your child get all that energy out while inside the house, but you could see a storm brewing. You have always been there. You are the safe space.
Now, it’s a new week and it’s time for ABA. Your child feels great stress from compounding factors that occurred well before the session. Then what happens? Your child refuses fulfill a demand and they get ignored. As they struggle without the support of a trusted adult, they get punished via planned ignoring for mourning their favorite toy and for needing outside time. ABA works because it crushes children into compliance no matter how they feel or what they need.
You can decide right now never to go back. Never to put your child into a situation where their behavior defines how they will be treated. You can give your child the exact support they need because you experience it all with them. You know when things get hard and how your child needs comforting. You can move past managing behaviors and instead coach emotions, helping your child feel and bear through the difficult times. And, those really difficult situations, like a child running into the street? Change the environment. Use a locking harness to make sure your child stays close to you when cars present a danger. Practice road safety with games like Red Light, Green Light in a safe location. Tell your child stories about how cars can hurt us, seeing the consequences from a child’s perspective. “If you get hit by a car, you won’t get to eat jelly beans until you get better because the car will hurt you!”
With emotion coaching and controlling the environment, you won’t need behavior management at all, and you certainly won’t need ABA. You can do this. You have all the skills already from your years of practice as a parent. Don’t let these medical professionals tell you that you don’t have what it takes. They are lying to you.
Learn strategies for how best to support your Autistic child by following these links:
As someone who came through traditional brick-and-mortar schooling, I had been conditioned to view education through a particular lens. Degreed and licensed teachers are necessary for learning to occur. Only specially trained instructors can “break through” to disabled kids. Children at each grade level should be fairly close to each other in ability and, if they aren’t, they should be removed to a separate class or school so they can learn at their own pace. That’s where I started.
Now I understand that traditional school is its own bubble. Are degreed and licensed teachers necessary? Yes, absolutely, because they are experts at navigating the system on behalf of students and their caregivers. They serve a dual role of teacher and liaison. They understand classroom management. They have other teachers nearby to help them work through challenges. They have the resources of the school system at their disposal. Yet, there was a time when teachers in the U.S. were much more similar to homeschooling parents than schoolroom teachers. So, we know there’s a distinction to be made.
To answer the title question in no uncertain terms, yes, absolutely, you can homeschool an Autistic child, even in spite of ABA practitioners and “experts” who are sure they know our children better than we do. When I first started homeschooling, I had no idea what I was doing. I have taught all the way up through college and tutored in the past, but the idea of being solely responsible for my own children’s education was daunting. I figured Special Education teachers had some magic I didn’t have. They knew something… were something… that I couldn’t access. After all, I have no formal education in the field.
I scoured the internet for information on how to teach Autistic children and found lots of specialized resources that dealt mostly with learning theory and behaviorism. That couldn’t be right, I thought. But then, how do you teach an Autistic child? I found some Facebook groups and read a bunch of posts on the topic. As I read, I realized that these actual homeschoolers were saying something unfathomable to me at the time. Teach Autistic students the same way you teach any other student. If you want to get a curriculum, do it. If you want to let your child lead the way, go for it. Embrace your child’s interests and utilize them as pathways to learning. Wow, I thought. That sounds almost too easy. (That, of course, was rationality peaking through ableism.) As my understanding has evolved, I have come to realize that teaching is secondary. Learning is an experience that the child has. It’s not something that a teacher can demand or enforce. We can only facilitate it. I have also learned that it’s completely ok to go at my child’s pace. If a child is strong in math and needs support in reading, well, that child is strong in math and needs support in reading then. We don’t have to try to force a child to advance in a predictable way based on age or ability. We really, truly can teach to the level of our kids no matter what that level might be. We homeschoolers can genuinely tailor education to our children in a way that leads to unfrustrated success.
As a homeschooler, I am strongly oriented toward both Charlotte Mason and child-led learning/unschooling, so I found a Charlotte Mason-inspired curriculum and got started on the year. Turns out, those homeschoolers were right. The incomparable benefit of homeschooling is that, at home, we can teach our child rather than teaching to the test. We determine the pace and the material. We know how much to challenge without leading to burnout. And, we have extraordinary flexibility to give our kids the breaks and attention they need to excel. I have vowed not to talk about my children specifically anymore in this blog and I will honor that vow. Suffice it to say, homeschooling has led to gains at a rate unmatched by public school. That is not a dig at public school teachers who are truly a national treasure. Honestly, it’s a dig at our entire educational system in the U.S. It is outdated, clumsy, racist, ableist, and expensive for no reason. Children have a right to a suitable education that doesn’t steamroll them to oblivion.
If you are approaching a point where you feel strongly that your Autistic child needs the freedom and support of a homeschool education, I am here to tell you that you can do it and you can succeed. It takes effort of course and lots of self-education. Ready to go? Check out these links to get started. (Beware of ableism in the Facebook groups. It’s hard to get away from.)
This post is a collaboration between Peace I Give and Unmasked. Tee Mone’t runs the page, Unmasked, on Facebook, and Unnmasked on Instagram. Diagnosed as an adult with substantial support needs, she works to help others understand what it means to be autistic. She is here to educate and most importantly, learn.
“My child just got diagnosed with Autism Spectrum Disorder. What do I do?”
If this question is on your mind right now, you’ve come to the right place. We’re here to help. It seems that when caregivers of newly diagnosed Autistic children start looking online for guidance, too often they’re bombarded with recommendations from people who understand autism purely from a professional standpoint. They can miss important posts like this one from Autistic Mama. Misinformation about autism is a quick Google search away, and this article is the antidote. If you want to know what you might really do for your Autistic child in plain language from two #ActuallyAutistic people, we invite you to read on.
Facing a brand new experience can be challenging and your feelings around this new diagnosis are valid. Let us reassure you and tell you that there is nothing to fear and nothing to mourn. Your child is not broken but is the same child you have loved all along. Autistic kids are just like any other child with the same very human need for understanding, support, and love. Parenting an Autistic child is simply parenting a child. All children have a unique composition of strengths, weaknesses, needs, and capacities that caregivers must navigate. The difference when it comes to Autistic kids is that you have the wisdom of an entire community of Autistic adults at your disposal to help you understand where your child is coming from. As you become better acquainted with how to connect with your child and address their specific needs in the healthiest way possible, you and your child will both be empowered.
Disclaimer
Now, at the top here, we must include a disclaimer that Autistic people are not a monolith. We don’t all feel the same way or share the same beliefs. As the saying goes, “if you’ve met one Autistic person, you’ve met one Autistic person.” In this piece, however, we will describe how the vast majority of Autistic self-advocates wish to be understood. Neither Peace I Give nor Unmasked criticizes any Autistic person for choosing other forms of self-advocacy that diverge from the majority preferences. However, those decisions lie strictly within the Autistic community. If you are not Autistic, it is not your decision to make.
Autism is a natural neurological variation in humans. Autistic brains are different from allistic brains. Autistic kids are not allistic kids waiting for someone to break them out of a mental prison. They are born as whole and dignified human beings in need of the same care and attention as all children.
Autism isn’t merely a diagnosis. There is an entire, global Autistic community out there ready to welcome your child. The Autistic Self-Advocacy Network (ASAN) describes the Autistic community as follows:
When we say “the autistic community”, we mean everyone who is autistic. We mean:
Autistic people who need a lot of support in their day-to-day life, and autistic people who need very little support.
Autistic people who can speak, and autistic people who are nonspeaking.
Autistic people who also have an intellectual disability, and autistic people who don’t.
Autistic people who have other disabilities besides autism, and autistic people who don’t.
Autistic people who were diagnosed by a doctor, and autistic people who figured out they were autistic on their own.
We are all a part of the autistic community, and we have to work together to make sure all of us have our voices heard. Every autistic person belongs in the autistic community. There is no “wrong” way to be autistic. Trying to separate certain groups of autistic people from the autistic community hurts all of us.
What is the Autism Spectrum?
A lot of people who first encounter autism assume that the spectrum is a linear progression from “mild” to “severe.” Please understand that functioning labels like “mild,” “severe,” “high functioning,” and “low functioning” can be extremely harmful to Autistic people, including your child. Autism is a spectrum, but that spectrum looks a lot more like an equalizer than it does a line.
Neuroclastic does a great job of explaining the autism spectrum in this post, but in short, the spectrum encompasses a handful of domains including but not limited to social aptitude, intensity of interests, motor control, and so on. Autistic people are measured against allistic people in each domain, which is inherently ableist. It’s like assessing a computer programmer’s untrained singing voice against professional opera singer, Maureen McKay. The computer programmer may have a fine voice, but it certainly won’t be as polished as McKay’s. Each person needs to be embraced for their inherent worth and appreciated for the gifts they bring to this world. Autistic people bring so much good to humanity.
Sadly, in most areas of the world, societies do not operate in a way that is inclusive of Autistic brains, so Autistic people are largely viewed as deficient. In contrast, the neurodiversity paradigm changes the perspective, declaring that a diversity of neurology among humans is normal, necessary, and natural. And, the social model of disability helps to challenge the idea that disabilities must be limiting in and of themselves. The social model demonstrates that, with acceptance, inclusion, and adequate accommodations and technology, nearly every disabled person could have equal access to social spaces. It’s a lofty idea and we can all help to improve the quality of life and access to shared spaces that disabled people deserve.
Disability is not a bad word and, for the majority of us, autism is disabling because society disables us. Functioning labels are part of the way society oppresses us. For example, some of the people who read this article may say to themselves, “the authors of this piece can’t be Autistic” because of the narrow view of autism they have encountered culturally. This is the kind of mindset we want to gently challenge.
Autism as an Identity
Much like other disabled groups that have developed passionate self-advocacy within their ranks, many Autistic people capitalize the “A” in Autistic in recognition that it is part of our identity. It’s who we are. It cannot be separated from us and it cannot be treated or “cured” without destroying us.
If you happen to see someone on social media with an Âû in their name, they likely consider autism to be a critical aspect of their identity. Âû is a reference to the Autistic Union, which has a list of 10 Points describing its ethos. And, Âû is a helpful way for Autistic people to recognize each other quickly in virtual spaces.
Autism as an identity is one of the reasons that Autistic people overwhelmingly reject person-first language (child with autism) in favor of identity-first language (Autistic child). It’s why you’ll notice that Autistic adults often dislike euphemisms like “on the spectrum.” It’s why many of us despise puzzle piece mentality, a position you may be surprised to learn is backed up by science. And, it’s why Autism Speaks is considered a hate group by most within the Autistic community.
Autism is an identity that deserves to be embraced, understood, and accommodated by our greater culture. By the same token, Autistic people have every right to vent about how difficult and painful it is to be Autistic in an oppressive environment.
Many of us engage in a coping technique called masking. If you’ve ever presented yourself differently from the person you really are in order to avoid an argument or get ahead in your career, you probably have an idea of what masking feels like. For Autistic people, it can be a constant requirement in order for us to navigate a world that was not made for us. We pretend to be neurotypical as best we can, so we can avoid uncomfortable situations, “fit in” more readily with others, and go unnoticed. It’s a survival mechanism and it is costly for us. Many Autistic adults must go to great lengths to undo the damage that masking has done to us. So, if an Autistic person lets down their mask around you, consider it a compliment. That means you are trusted to see us as we really are, stims and all.
Check out this post from Tee Mone’t of Unmasked about the raw truth of what masking really is:
Allistic caregivers are crucial to the wellbeing and safety of their Autistic loved ones. A positive, affirming relationship with a caregiver is not only helpful, it may even be life-saving. Caregivers can uphold the dignity of their Autistic loved ones by getting consent before talking about them, limiting the personal information shared about them, not complaining about autism or Autistic people, and taking their needs very seriously. This excellent infographic from the Therapist Neurodiversity Collective provides a snapshot of ways in which to embrace Autistic identity by refusing to pathologize us:
It’s important to note here that there are some Autistic people who are more discreet about their autism, perhaps because they have experienced substantial discrimination or because they view it primarily as a medical diagnosis or because other aspects of their identity are more pronounced. It is up to Autistic people ourselves to decide how we will move through our lives. The best thing our families can do for us is to support us in whatever way we need. Some of us are out and proud about being Autistic. Others are just living life. There’s no shame in any of it.
Disclosure Etiquette
Generally speaking, it is considered bad form to tell people your child is Autistic without the child’s consent, in the absence of a seriously compelling reason. For instance, you’d likely want to tell medical professionals and your child’s school, so they can better understand your child’s needs. You’d probably not need to tell your family and friends unless they care for your child and require support in providing the best care. You definitely don’t need to tell random strangers or research companies trying to buy your child’s DNA for dubious purposes.
Use great care and discretion with the understanding that disclosing your child’s diagnosis is an extremely intimate and intrusive act. And, finally, consider what information needs to be shared. Do you need to state that your child is Autistic or do you need to let the person know what to expect? For instance, if you’re at a park with friends who don’t know your child’s diagnosis and you know your child tends to elope, you might say, “[Child] sometimes runs off unexpectedly. Would you mind helping me keep watch?”
There is nothing shameful about being Autistic or having an Autistic child. What we’re highlighting here is the importance of respecting the privacy of Autistic people and allowing us the dignity of controlling the way information about our personal identities gets exposed.
Now, if you’re wondering about disclosing to your child their own diagnosis, yes, please! From the moment you know, tell your child. Openly, talk about autism in positive, factual ways as they grow up. Help your child navigate the world by showing them how. Things like social stories (keeping in mind that social stories have a potential to harm) and role playing can be helpful tools to give Autistic kids a concrete view into the hazy, amorphous world of social interaction. Talk with your child and observe their behavior for clues into what you could be doing to better support them. Accept that Autistic is who they are. Not what they have.
Will My Child Ever Fit In?
Depends on who your child interacts with. It’s so important for caregivers of Autistic children to recognize how difficult it is for Autistic kids to make a way for themselves when they’re thwarted at every turn. Autistic children must be given opportunities to connect with other Autistic children as a basic human need. From crucial childhood relationships with both Autistic and allistic children, Autistic kids learn what it means to be a friend. And, guess what, Autistic relationships have been studied! Here’s what we know.
Autistic people ARE empathetic (more on this below).
Autistic people ARE social.
A study on Autistic kids aged 8 to 15 years found that they believed they were good friends to others and also that they enjoyed social interaction.
At least 80% of Autistic children have at least one friend and the majority enjoy their friendships.
Lack of supports is what excludes Autistic kids from social experiences, not autism.
Allistic biases against Autistic people disappear when impressions are based on conversation rather than audio-visual cues (meaning, prejudice against Autistic mannerisms keeps allistic people from having wonderful interactions with Autistic people).
Autistic people tend to be more invested in their social partners and prefer to have genuine conversations rather than small talk.
Autistic adults often prefer the company of other Autistic adults (so get your kids into Autistic social experiences early on).
A special note on empathy. The outdated claim that Autistic people lack empathy is a lie. What’s true is that Autistic people struggle with cognitive empathy when it comes to allistic people, meaning, we can miss certain social cues and misunderstand situations. On the other hand, our affective empathy, the ability to bear with others, is in full effect for lots of Autistic people. Sometimes, affective empathy is so intense and unmanageable that it can lead to meltdowns and shutdowns. Many Autistic people feel deep, genuine, visceral emotions. However, while hyperempathy is a well known Autistic trait, different Autistic people experience varying degrees of empathy, just as it is in the neurotypical world. And, our empathy may not look the same as an allistic person’s.
Relating to Autistic people requires effort on the part of allistic people. Dr. Laura S. DeThorne wrote about this in her piece entitled, Revealing the Double Empathy Problem. In it, she pinpoints a most challenging barrier for Autistic people who are trying to relate to allistic people. She says,
Although the misunderstanding may be bidirectional, it disproportionately stigmatizes autistic people when their perspectives are not adequately represented within institutional power structures, like education, research, and medical systems. When autistic perspectives are not heard, it becomes easy for autistic behavior to be misunderstood and pathologized. Note, for example, much of the autism literature focuses on helping autistic individuals understand nonautistic perspectives, rather than the other way around.
As a caregiver, you can work toward understanding your child on their terms and showing them what a healthy and respectful relationship looks like. All Autistic people communicate. Sometimes it just looks a little different from what you might expect.
Is Early Intervention Necessary?
In the United States, children under the age of 3 are eligible for Early Intervention services when they aren’t meeting their expected milestones and/or if they have diagnosed disabilities that require support. When autism is suspected, many caregivers are pressured by medical professionals and peers to get their kids assessed and into some form of “treatment” as early as possible. We have even seen claims that Autistic children will never “improve” if their caregivers wait too long for “treatment.” That’s simply not true. Autistic brains don’t need treatment any more than neurotypical brains for the mere existence of a particular neurotype. If that weren’t enough, a recent meta-analysis found that there is insufficient evidence to recommend early intervention or treatment for children. Pressure to push children into Early Intervention can be wielded as a scare tactic and that helps no one.
Early Intervention is as embroiled in anti-Autistic ableism as any intervention offering “help” to Autistic people from an allistic perspective. The therapies offered generally seek to bring an Autistic child as close to typical expectations as possible, which is ableist. Autistic people do not need to be more allistic in order to move freely through and contribute to the world around us. So, while Early Intervention is not necessary, we do understand that it is a cost effective way to access services like occupational therapy that can help Autistic kids a great deal. Whatever you decide to do, we encourage you to brush off any pressure that comes your way about changing your child.
Autism is simply a natural way of being. That’s not to say Autistic people don’t need any therapy. There are various forms of therapy that can help Autistic people cope with living as strangers in a strange place without having to be subjected to behaviorism. Different people benefit from different things, so having an open mind can help you find exactly what will serve your child the best.
Occupational Therapy: OTs help identify gaps between a person’s needs and their ability to meet those needs. Autistic people often need support when it comes to motor skills (e.g. dressing/undressing and tying shoes), proprioceptive abilities (e.g. tolerating the taste and texture of food, and knowing when it’s time to urinate), and self-regulation. OTs have the knowledge and experience to recognize where there are disconnects and help Autistic kids integrate their senses and practice new life skills.
Speech Therapy: Speech is widely considered the superior form of communication. It’s not. All forms of communication are valid. Some Autistic people prefer speech, some prefer speech some of the time, and some don’t prefer speech at all. There are many reasons for these differences. What Speech Language Pathologists can do is give your child the tools to improve their speech and/or other modes of communication.
Physical Therapy: PTs specialize in human movement. If your child needs support with balance, motion, or spatial awareness, a PT might be able to help. There is some overlap between what OTs and PTs do for Autistic kids, so our general suggestion would be to start with OT and add in PT, if needed.
Dialectical Behavior Therapy: DBT is a cognitive-behavioral therapy that helps people practice regulating their emotions, relate more easily with others, and handle stress, all of which are skills every human person certainly needs. Given the strain of moving through this world as an Autistic person, DBT is often a great fit for addressing lingering traumatic experiences. Side note: Even though DBT and ABA contain the same word, they are NOT the same. DBT is a true behavioral therapy that is beneficial for many. ABA is a behaviorist therapy that is harmful.
And, finally, a note on comorbidities. Autism is a neurology unto itself with its own strengths and weaknesses. Oftentimes, people conflate other diagnoses with autism as though they are one and the same. An autism diagnosis is not dependent on things like IQ, aggressive behavior, hyperactivity, and so on. When present alongside autism, these things may or may not need to be addressed professionally. And, if they do need to be addressed, the supports may be beyond the scope of this particular article. (In other words, we can’t cover every possible therapeutic option, so please seek out support from Autistic adults.)
Will My Child Ever Be Independent?
Are we meant to be? Do you know anyone who is completely off-the-grid and self-sustaining? Seems like it would be a lonely life. We may wonder what the future holds for Autistic kids, but independence need not be a goal. We are, by nature, an interdependent species. We need connection to thrive. So, one of the things Autistic children need to practice is self-advocacy. Empower your child to ask for what they need. Reveal all the avenues available. Some Autistic people do need lots of hands-on assistance into adulthood (which is probably what most people mean when they wonder about independence). That’s totally fine. They are as fully human, fully worthy, and fully deserving of fulfillment as is any person. It’s natural to worry when you’re responsible for the care of a child, but put that nervous energy into helping your child build a network of support.
How Do I Discipline My Autistic Child?
You teach an Autistic child about the world in the same way you’d teach an allistic child, by figuring out how they learn best and presenting information in that way. There is absolutely no need for intrinsic motivation killers like rewards or punishments. Especially not physical punishment. There’s no need to control your Autistic child or force their bodies to do things that are uncomfortable for them (such as demanding eye contact or using hand over hand instruction). When you create an environment where your Autistic child can succeed, your child will have their best opportunity to grow in their relationship with you and to trust you.
As the caregiver of an Autistic child, your child will be best served by your acceptance that most Autistic children have specific needs around sensory processing. Autistic processing of sensory input is different from that of the allistic brain. Responses tend to be more pronounced and overload can be unbearable. Some things to know.
Sensory Seeking and Sensory Aversion: For most Autistic people, our experiences with external stimuli can be heightened. Sensory Seeking means craving input to address uncomfortable understimulation of the nervous system. Seeking may look like enjoying being extra loud, using our bodies to crash into the world around us, and generally filling up a space. Sensory Aversion means craving escape to address uncomfortable overstimulation of the nervous system. Aversion may look like extreme discomfort with anything touching our skin, blocking our ears to muffle a cacophony of sounds, and covering our eyes to shield them from bright lights. While many Autistic people tend to experience either seeking or aversion, given the right circumstances, we can all experience them both.
Meltdowns and Shutdowns: To understand meltdowns and shutdowns, think about the most upsetting day you’ve had recently. Maybe your car broke down, causing you to lose your job. Then you tried to take the bus home only to find that you left the gate open and your dog has run away. And so on. Just a rotten day. You can relate to jab after jab sending you over the edge. When the needs of Autistic people are persistently unmet, the descent into overwhelm is like your really bad day. You might go home and cry, call a friend, or try to relax in front of the TV. Autistics can end up so dysregulated that these calming techniques don’t help. The end result is an uncontrollable explosion of emotion and physiological tension (i.e. a meltdown) or a complete reset of capacity (i.e. a shutdown). Both are upsetting for Autistic people. No one wants to feel that way, so it’s helpful for our families to understand what we need in order to avoid getting to that point. Meltdowns and shutdowns are not necessarily a given. They can often be prevented by addressing our needs.
If you are interested in a gentle discipline approach to guiding both Autistic and allistic children, these articles may help you as you figure out exactly what your child needs most in order to feel safe, secure, and supported.
While this post is about how to proceed with a new diagnosis, we have included this response to those who may ask about how to obtain a diagnosis. Generally speaking, in the United States, autism assessments for children are conducted by developmental pediatricians and pediatric psychologists. Your child’s standard evaluation may involve questionnaires and interviews for the caregivers, observation of the child, and administration of the Autism Diagnostic Observation Schedule (ADOS) and/or the Autism Diagnostic Interview-Revised (ADI-R), along with a review of observations from the child’s teachers and other professionals, if applicable. Be aware that masking (as described in the Autism as an Identity section) can interfere with a medical professional’s ability to diagnose your child. The very thing that helps keep us safe in other circumstances can end up making it more difficult to get the accommodations we need. Please let your child know they don’t have to hide who they are with the doctor.
If you are in the United States, be aware that your insurance company may require a referral from your child’s pediatrician or family doctor. If you cannot afford a standard evaluation or are uninsured, organizations like Easterseals may be able to provide you with discounted services. Be aware, however, that these organizations are not typically autism-forward and may recommend ABA therapy.
In order to be diagnosed, your child must meet the criteria set out in the Diagnostic and Statistical Manual of Mental Disorders (current edition, DSM-5), which includes an unfortunate “severity” scale of 1, 2, and 3, each corresponding to an increasing need for supports and services. These numbers represent how burdensome the doctor expects your child to be and that is a problem. The severity scale also does not account for changes in capacities as your child grows up and it is heavily influenced by your child’s ability to speak. However, speech is not required for communication. Do not be overly concerned if your child doesn’t speak. Take note of the number your child is assigned, but don’t allow it to dictate your acceptance of your child’s capabilities.
Many caregivers question if pursuing a diagnosis is worthwhile. The Autistic community is somewhat split on this. A medical diagnosis can open many doors for your child to receive accommodations and modifications. It can also, sadly, present unwanted barriers, such as being barred from certain jobs, military service, and even being disallowed from emigrating from one’s home country. Despite the potential challenges, childhood diagnosis tends to be easier to obtain. It is incredibly difficult to obtain a diagnosis as an adult, which is why the Autistic community embraces self-diagnosis. We encourage you to read this beautiful post from Autistic Mama about the reasons why early diagnosis can be life-changing. If you want to wait or not pursue a formal diagnosis at all, your child may still be eligible for supports in school. In the United States, schools can conduct their own internal assessments to provide your child with appropriate accommodations and modifications while in school, even absent a formal, medical diagnosis.
On IEPs and 504 Plans
We promised plain language at the beginning of this post and we’re about to take a dip in the blistering world of federal law, so please bear with us as we keep this as simple as possible. We strongly recommend checking out Wrightslaw and the Wrightslaw books if you want to get the most accurate information about accommodations and modifications.
In brief, the federal Individuals with Disabilities Education Act (IDEA) guarantees the right of your child to a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). Part of giving your child a FAPE involves establishing a customized blueprint for their educational track via an Individual Education Program (IEP) or a 504 Plan.
IEPs are comprehensive action plans that detail precisely which combination of services will provide the ideal learning environment for your child in a special education program. The custodial caregiver (e.g. parent, grandparent, etc) is part of the IEP team and advocates on behalf of the child. The assessment process to be deemed eligible for an IEP can be lengthy and tedious. If your child already has a medical diagnosis, this is one of the times when it comes in very handy. IEPs are nearly limitless. If your child needs a solution, this is where you put it. The IEP is also where the IEP team declares the LRE for an individual student be it a specialized separate class or some form of integration into general education.
504 Plans are guaranteed under the Rehabilitation Act of 1973. Unlike IEPs, 504 Plans do not entitle children to the extensive services of special education. You can think of them as a less stringent counterpart to IEPs that are especially useful for general education students who have specific areas where they need support, such as dyslexia. Students can technically have both an IEP and a 504, but having both is not necessary. It’s important to note that IEPs can and usually do include everything that would be written into a 504 Plan, but the reverse is not true.
In order to obtain supports for your child through an IEP or a 504 Plan, the first step is to contact the school (typically a school/guidance counselor or an assessment coordinator) to request an evaluation. You’ll want to be prepared with as much information as you have about what your child needs. Check out this write-up for a detailed overview of the process.
Controversies Explained
ABA: Applied Behavior Analysis is billed as a “treatment” for autism, but it has widely been met with scorn due to its proclivity for causing post-traumatic stress disorder in Autistic children. It’s no wonder as the “father” of ABA had this to say about Autistic people, “You see, you start pretty much from scratch when you work with an autistic child. You have the person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense.” For more information on why ABA isn’t welcomed by Autistic people, check out ABA Treats a Problem Your Child Doesn’t Have.
Asperger’s: In the United States, Asperger’s has fallen into medical disuse as a diagnosis as the DSM-5 rightly condensed autism into a single diagnosis. Many Autistic people who were originally diagnosed with Asperger’s continue to use this term. However, allistic people should be aware that Hans Asperger was a Nazi eugenicist who was responsible for the murder of hundreds of disabled children (warning: linked article contains functioning labels). Some people have pointed out that he may not have been a Nazi sympathizer, but rather a person who fell in line in order to save his own life. Even if that is the case, he still sent hundreds of children to their deaths and does not deserve the honor of being associated with Autistic people. Please use “Autistic” instead as a caregiver.
Autism is a Superpower: The belief that Autistic people have superhuman powers is a form of inspiration porn that dehumanizes and others us. We are as human as any other person. Our autism is often disabling, because it has not yet been normalized by the broader culture in which we live. Because of our different neurology, there are some areas where we might excel. It’s ok to celebrate accomplishments by virtue of our efforts. It’s not ok to celebrate accomplishments because we are Autistic.
Autism Parent: Curiously, many allistic parents of Autistic children proclaim themselves as “Autism Parents” but are often unwilling to adopt the identity-first language most of us prefer (i.e. Autistic person). “Autism Parent,” and the use of autism as a lead into any conversation about their kids, gives the impression that the caregiver is donning their child’s identity as a sort of uniform to showcase their experience caring for an Autistic person. And, worse, “Autism Parents” often say things like “Autism won today” to indicate they’ve had a bad day. Imagine saying such a thing about any other identity. Please use “Parent of an Autistic Child” instead.
Autism Speaks: This organization has developed such a notorious reputation within the Autistic community that many of us refer to it as A$ (that’s a dollar sign in reference to the organization’s large but ineffectual budget). Autism Speaks spent much of its existence with no Autistic voices in its leadership. From its earliest foundations, the organization pushed the narrative that autism was a nefarious creature stalking families to ruin their lives. To add insult to injury, Autism Speaks spends a mere pittance on helping Autistic people and their families. For more information on why Autistic people, by and large, do not support Autism Speaks, check out this masterpost. We encourage you to connect with organizations that are led by Autistic people, such as the Autistic Self-Advocacy Network.
Functioning Labels: “Mild,” “Severe,” “High Functioning,” “Low Functioning,” “end of the spectrum” and so on. These are functioning labels that are meant to communicate to allistic people just how much Autistic people diverge from neurotypicality. Even the levels assigned by diagnosing doctor’s that are meant to indicate anticipated support needs end up communicating how burdensome we are expected to be for our caregivers. Yet, Autistic people’s capacities can slide all over the place, even hour to hour. Functioning Labels provide no useful information. When talking about Autistic people, avoid discussing deficits. Instead, help us advocate to meet our needs. For example, rather than saying “my child is non-verbal,” try “my child uses augmentative and alternative communication (AAC).”
Person with Autism: Survey after survey demonstrates that Autistic people, on the whole, prefer identity-first language. Autism isn’t a feature. It is the very lens through which our brains process the world. Every Autistic person has an Autistic mind. We cannot be allistic. We cannot “age out” of autism and we cannot be “cured.” It is who we are, therefore, it is always appropriate to use identity-first language (Autistic person) unless you’re speaking about an individual who has specifically indicated that they prefer person-first language.
Puzzle Piece: Since the puzzle piece is ubiquitous, you might not realize that Autistic people generally do not identify with it. The puzzle piece was created by an allistic member of the National Autistic Society and it originally featured a crying child as a symbol portraying autism in contrast to the way “normal” people are supposed to be. It says Autistic people are a baffling mystery. That our minds aren’t complete. And, it garners such ableist phrases as “Until All the Pieces Fit.” Parents of Autistic kids – the group most likely to use it – go to great lengths to explain why they don’t see the puzzle piece as a negative thing. However, a 2018 study confirmed once and for all that the puzzle piece is harmful to the Autistic community. The Autistic community has embraced the gold infinity loop as a more appropriate representation of who we are. (The rainbow infinity loop is a positive symbol for neurodiversity.)
Sesame Street: In April of 2017, Sesame Street debuted Julia, an Autistic girl who would introduce children worldwide to autism. Many Autistic adults were overjoyed, especially given the fact that Sesame Street had spent years developing Julia with the Autistic Self-Advocacy Network (ASAN). We knew she would be a genuine reflection of Autistic people. Sadly, in 2019, the partnership between Sesame Street and ASAN ended. In a devastating betrayal, Sesame Street elected to partner with Autism Speaks instead and promote their stigmatizing resources for parents of newly-diagnosed Autistic children.
Symptoms: Autistic people have traits, not symptoms. The way we think and behave is not the result of an illness. It is a manifestation of our neurology and our individual personalities. Use of the word symptom is an example of the pathologizing of autism. Because we are different, there is a tendency from a medical perspective to pinpoint and correct those differences and that tendency makes its way into the literature around autism.
Violence: An unfortunate stereotype exists that Autistic people are prone to violence. In reality, violence is not part of the criteria for a diagnosis. It is not indicative of autism. So, why do caregivers of Autistic kids talk about violence so much? It’s a misunderstanding of what the “violence” actually is. All of us, Autistic and allistic alike, understand what it’s like to be worn down by life and pushed to the limit. This stress is the root of much discomfort, frustration, and even anger. It’s something that Autistic people experience significantly more often than allistic people, because we are moving through a world that does not operate with our needs in mind. Some Autistic people, particularly children, become so overwhelmed that they lash out. It is a form of communication that tells everyone around them that they need help. Not censure. Autistic people are not inherently violent.
How Do I Best Love My Autistic Child?
This one isn’t just about feeling a tender, nurturing draw toward an Autistic child. We know you love your child deeply or you wouldn’t be here. This one is about loving an Autistic child for who they are. Not for who they might be if they weren’t Autistic. It’s about recognizing your child’s stimming and supporting them by providing stim toys and room to stim without judgment. It’s about engaging with, rather than pathologizing the great interest your child takes in the things they love the most. It’s about viewing Autistic people as creative communicators rather than awkward and socially inept. It’s about going directly to Autistic adults, and professionals who listen to Autistic adults, to ask questions about how to support your Autistic child. And, it’s about folding your Autistic child into your family life in the most natural ways. Full acceptance. Unconditional love. Exactly what every caregiver should do for every child. It’s nothing remarkable and it’s the most remarkable thing of all.
We’ll leave you with this video that sums up how we want parents of Autistic children to choose to view their kids in hopes that the more our world understands autism, the higher quality of life all Autistic people can enjoy.
Looking for More?
Our friend, Autistic Mama, is working on another resource she’s calling Autism Diagnosis Journal: A Parent’s 30 Day Guide to Confidently Process Their Child’s New Autism Diagnosis. Autistic Mama, Kaylene George, is an Autistic mother of 6 neurodiverse kiddos, including one Autistic child. Her life’s work is helping parents of Autistic children become better parents, advocates, and autism allies. Her efforts serve to make our society more accepting and inclusive to Autistics. Her newest project promises to be comprehensive and thoughtful, and we encourage you to keep watch for when it drops.
*Please comment below or message Peace I Give with any questions you may have. We consider this to be a living guide to be updated as new pressing questions arise.We are open to criticism as well. Thank you for reading!
Almost all children will go through periods where they lash out in some way and spitting, hitting, biting, and kicking seem to be the most common behaviors. What should you do when your child lets loose? It’s critical to understand what underlies the behavior. We could fancy ourselves investigators for this purpose. What precipitated the event? Here’s a list of replies your child might give you if they could.
I just felt like it.
I need your attention.
I need freedom. Give me space.
I’m tired.
I’m hungry.
It’s too noisy in here.
My sibling took my toy.
Stop touching me!
You’re not listening to me.
This is fun!
I’m frustrated.
Let me do it my way.
I saw my sibling doing this and I wanted to try.
I was curious what would happen.
I’m anxious.
My body doesn’t feel good.
Addressing Needs
Both my 2 year old and my 4 year old spit, hit, bite, and kick at one time or another, so I completely understand the frustration and that gut feeling of wanting to react in an unkind way. But stop! Stop for a minute and think about what’s happening. Let’s categorize the “whys” for greater understanding.
Attention
I need your attention. You’re not listening to me.
Sadly, we’ve been conditioned to see children as annoyances who drain our time and our energy. We don’t want to “give in” when our kids express their need for our attention in undesirable ways. However, empathetic communication actually increases well-being. It’s not simply a way to meet our children’s needs. It also improves our relationship. If your child needs your attention, try a little active listening.
Some of the pitfalls I face when it comes to listening to my kids include thinking of something else while my child is communicating, trying to figure out what I’m going to say next, and attempting to manipulate the direction of the conversation. If you’re anything like me, one or more of those statements might resonate.
Professional communicator and educator, Julian Treasure, recommends a four-step approach to listen with investment:
Receive: Absorb what the child is telling you
Appreciate: Pause and think
Summarize: Paraphrase what you’ve understood
Ask: Learn more
If you know your child needs your attention, give it freely. Silence those harmful voices telling you not to spoil your child. You cannot spoil a child with love and affection. Quite the contrary, kids who are perceived as spoiled tend to be those children who have a) not had their boundaries respected so they react with belligerence or b) not been given enough attention and therefore do not trust that their needs will be met.
Boundaries
I need freedom. Give me space. My sibling took my toy. Stop touching me! Let me do it my way.
In our childist culture, it’s easy to get caught up in “what’s mine is mine and what’s yours is mine” thinking when it comes to children. We’ve got to work toward flipping that perspective around and radically respecting our children’s autonomy.
Years ago, sexuality educator, Deanne Carson, made headlines when she advocated for asking infants if it was ok to give them a diaper change. She acknowledged that they wouldn’t be able to consent, but said that asking for consent and pausing to acknowledge them lets children know that their response matters.
I fully admit that I scoffed at her comments at the time, even though I was already three years into my Peaceful Parenting journey, as I was sorely lacking an understanding of childism.
Yes, you can let your baby know you’re about to change their diaper. Consent does start from birth and it never ends. We must prioritize navigating our children’s demands for bodily autonomy and their health-related needs. It’s not easy or simple, but it’s our responsibility.
If you know your child is enforcing a boundary, respect it. Bottom line. For guidance on helping siblings through the tough task of sharing/turn-taking, check out this article.
Discomfort
I’m tired. I’m hungry. It’s too noisy in here. I’m anxious. My body doesn’t feel good. I’m frustrated.
Discomfort shows up physically and mentally. Both are completely real and valid. In our culture, we tend to tell children how they’re feeling. We dismiss skinned knees with “You’re ok” and toileting urgency with “You just went!” Children are too often forced into the constraints of our schedules and whims, and it’s not ok. Kids deserve for their needs to be met. Where the dominant culture tells us that our children are manipulatinrg us, it is incumbent upon us as Peaceful Parents to reject that perspective wholesale. If our children need to use the bathroom, they will. If they feel sick, we listen. If they are anxious, we soothe.
And, a note to those who fear all this responsiveness will lead to spoiling children. It won’t, but as we get into more complex needs, our responses may need to evolve. All children need accomodations, some more than others. Autistic Mama wrote a fantastic piece called Are You Accommodating or Coddling Your Autistic Child and really it applies to all children. In it, she explains:
The line between accommodating and coddling boils down to one specific question.
What is the Goal? You have to ask yourself, what is the goal here?
Let me give you an example…
Let’s say your child has a history assignment and is supposed to write two paragraphs on the civil war.
What is the goal of this assignment?
To prove knowledge of history.
Now any tool or strategy that doesn’t take away from that goal is an accommodation, not coddling.
So typing instead of writing? Accommodation.
Verbally sharing knowledge of the civil war? Accommodation.
Writing a list of civil war facts instead of using paragraphs? Accommodation.
Because the goal of the assignment is a knowledge of history, not the way it’s shared.
We can empower our children to solve their own problems by showing them how to be problem-solvers from a young age. We can teach our children to ask for what they need and demonstrate that their needs matter by obliging their requests. As they get older, we can empower them to seek reasonable accommodations in a variety of environments by considering what needs they must have met in order to succeed and to advocate for themselves.
I would be remiss not to mention one thing here of great importance to the Autistic community. AUTISTIC PEOPLE ARE NOT INHERENTLY VIOLENT. Violence is not a criteria for diagnosis. So many people ponder why it seems like Autistic children tend toward aggression. Well, imagine having to endure all the little things you dislike (flavors, sounds, textures, etc.) all the time and then being treated as though you’re a burden for asking for it to stop. You might be driven to aggression as well. It’s hard being Autistic in a world that isn’t made for you. Meet the needs of Autistic kids and you’ll see a drastic decline in any aggression.
If you know your child is uncomfortable, try to help relieve that discomfort. Some children are unable to clear saliva and may spit or drool as a result. This is common with children who need lip or tongue tie revisions. If your child is anxious, try these measures. Whatever is going wrong, seek out a solution to support your child rather than punishing them.
Play
This is fun! I saw my sibling doing this and I wanted to try. I was curious what would happen. I just felt like it.
Our children’s top job is to learn through play. We must leave some room for childlikeness, even when it comes to things that are as upsetting as aggression. As strange as it might seem to us, children do many things because they’re testing out how their bodies move and what effect they can have on their environment.
If you know your child is playing, try directing their play into a form that is more conducive to your family’s lifestyle. Getting down on the ground to wriggle around kicking can be fun. Just make sure the goal truly is play or your actions could come across as mocking.
Tips for Interrupting Aggression
Respond Gently. First and foremost, try not to meet force with force. Understand that children start out several steps ahead of us in terms of emoting because of their stage of brain development. The calmer we are, the better we can respond. And, if you need to physically stop your child from harming you, use the least force you possibly can.
State Your Boundary. Let your child know your expectation in clear, unambiguous terms. Try “I know you want to hit me because you’re angry. I can’t let you” or “I won’t let you hurt me.”
Engage the Three Rs. When you need to engage with a dysregulated child, remember to Regulate, Relate, and Reason. For many children, just acknowledging and empathizing alone will resolve the aggression, so that you can work toward meeting the need.
Give Your Child an Alternative. Understand that there are two types of aggression: the type you can mediate, like hitting and the type you can’t, like spitting. You can stop a child from hitting, biting, and throwing. You can’t stop a child from spitting, peeing, or pooping. In all cases, it’s crucial to address the underlying need, but you may also be able to introduce an alternative such as giving a child a chewie to chomp in place of spitting or even a towel to spit into. Whatever alternative you choose must be desirable to your child and easy to access when the need calls.
Resolve the Underlying Need. I cannot stress enough how important this one is. You’ve got to figure out what’s going wrong for your child and help them fix the problem. For example, when a child is pushing his sister down over and over again, take notice of why it’s happening. Is the sibling standing too close? Bothering the child while he’s playing? Once you figure out the need, the solution is often simple enough. Help the kids regulate and then invite the other child to help you in the other room.
Give Children the Words.Kids do not instinctively know how to ask for what they need. I hear a lot of parents telling children to “Use your words.” Let me tell you how very unhelpful that is! Parents, please use YOUR words. Give your child the language they should use to have their needs met, even if you have to do it over and over and even if you have to ask questions to get there. The more you model how to use language under stress, the more capable your children will be in following suit.
Avoid Confusing Messaging. While you’re giving your child the words, remember that children think in very concrete terms. There’s a series of books by Elizabeth Verdick called the Best Behavior Series and it includes such titles as Teeth Are Not for Biting, Feet Are Not For Kicking, and Voices are Not For Yelling. Read those titles again… carefully. How do we chew our food without biting? How do we swim without kicking? And how to we call out for help without yelling? It’s not logical, so it’s not going to make a lot of sense to a child. Kids might learn in spite of these messages, but it’s best to avoid them if possible.
Consider an Assessment. If your child’s aggression doesn’t seem to be manageable using any of the tips above, consider that something deeper may be going on and that you might not have all the information you need to meet their needs. Put aside concerns about stigma and work with a professional to help you and your child understand what’s happening.
ABA is an extremely sensitive topic. You may experience intense emotions as you read this piece. I ask that you read through the post in its entirety before you make a final decision on what your perspective will be. If you need clarification, please ask. If you disagree, I’d appreciate your feedback.
It has taken me months to prepare this post for so many reasons, not the least of which is that I’ve been coming to terms with my own very late autism diagnosis. I’m one of the fortunate people who wasn’t subjected to Applied Behavior Analysis (ABA) therapy, but so many Autistic people are not so lucky. I write this post for them and for all the children now and in the future who will undergo this very painful experience.
At the start, I have to make clear that I am not a professional. I’m an Autistic mom of an Autistic child, and I have been in the position of deciding whether or not to put my child into ABA therapy.
I also need my fellow parents to know that I am not condemning you if you’ve chosen ABA therapy. It is the gold standard “treatment” for Autism Spectrum Disorder (ASD), it’s covered by insurance, and it certainly seems to work. Unless you’ve been exposed to Autistic adults and our position on ABA, there’s little reason for you to be concerned. I hope you will hear what we have to say and consider whether you want to continue down this path.
Autism Isn’t a Behavior Disorder
So, why treat it with compliance-based training? Autism is a completely natural, neurological variant. It is primarily disabling in cultures where Autistic people are not included and embraced.
Autistic brains perceive and process the world differently from allistic brains. But, we are fundamentally human beings, like everyone else, with the same emotions and responses to stimuli. If you hear a loud noise, do you not cover your ears? That’s not considered odd at all, right? So, why would it be odd for an Autistic person to do the same? Sure, it might be accompanied by humming and rocking, because stimming is so comforting to us, but we’re doing the same thing you do to reduce the strain of overstimulation. When allistic children relieve intense stress by cutting, we don’t send them to compliance-based training to try and coerce them to stop. We get them into helpful therapies to give them back control and provide relief that doesn’t harm, thereby addressing the problem rather than the behavior. And, that’s what Autistic kids need: acknowledgement that behavior is communication and relief from the underlying problem.
A History of ABA Therapy
Back in the 1970s, UCLA psychologist, Ole Ivar Lovaas, participated in the development of a therapy that promised to alter “deviant” behavior. His involvement in the Feminine Boy Project offered him an opportunity to engage in a form of behaviorism soon-to-be-called conversion therapy wherein gay men would theoretically be converted to heterosexuality. He also used this new therapy in his work with Autistic children.
Conversion therapy for homosexual people has since fallen out of favor, for obvious and good reason. However, Autistic children are still subjected to the same behaviorism that we’ve deemed unacceptable for use on other human beings. The reason? It was the same back then as it is now. In the words of Lovaas himself, ABA therapy can make Autistic kids “indistinguishable from their normal friends.” Unfortunately, that so-called progress comes at the price of an uptick in PTSD and suicide among Autistic people. I’m sure you can understand how devastating it is to go through life feeling that the person you genuinely are simply isn’t enough for the people who say they love you. Now, before you decide that my criticism is unfounded, let me make it abundantly clear that Lovaas was a pretty despicablefellow:
Modern ABA might look gentler on the surface; however, at its core, it starts with the assumption that Autistic people are broken and wrong, and it seeks to make our behavior more comfortable for allistic people.
Autistic Perspectives on ABA
Amythest Schaber is an Autistic artist, writer, public speaker, and advocate. Her series, Ask an Autistic, tackles a great many topics that have proved helpful to her many allistic followers. In this episode, she explains what ABA is from her perspective.
The following list includes links to other Autistic writers and advocates, as well as allies, who explain why ABA should be avoided:
Even new, “gentle” ABA therapy is problematic. (Source, source, and source)
Finally, this post from the Non-Binary Intersectionalist (and I must give tremendous credit to this page for the wealth of resources I’ve been able to provide in this post!) describes a recent interaction with a young child in ABA therapy:
If you’re interested in reading some personal accounts of ABA therapy, I encourage you to check out this post on Stop ABA, Support Autistics. If you still aren’t convinced that ABA therapy is harmful, read this post.
What’s the Alternative to ABA Therapy?
To answer this question, we have to consider what well-meaning parents intend to happen when they put their children into ABA therapy. Some of the most common reasons I’ve seen are 1) to help the child be more independent, 2) to help the child navigate society more easily, and 3) to protect the child from danger. There are many, many more reasons of course! These are simply the top three as I’ve understood them.
I imagine you won’t be very surprised to learn that the best alternative to ABA therapy, in my experience and in accordance with my values, is Peaceful Parenting.
Peaceful Parenting achieves each of the three aims I mentioned by instilling self-sufficiency, self-assurance, and boundary recognition in children, as well as improving emotional development and self-regulation, one interaction at a time. Peaceful Parenting does not require thousands upon thousands of dollars or 40+ hours a week of therapy. For symptomatic concerns, there are other wonderful therapies like speech therapy, occupational therapy, and physical therapy. These therapies can help discover and meet needs that parents may not fully understand. And, much like taking an ESL class, they help Autistic kids learn a different culture without coercion.
Autistic kids deserve the same gentle treatment as any other child. If you wouldn’t put your neurotypical child into ABA therapy, there’s no need to put your Autistic child into ABA therapy. If you’d consider Dialectical Behavior Therapy (sidenote: DBT and ABA are not the same) to help your neurotypical child handle the stresses of life, offer the same to your Autistic child. Figuring out how best to support a child – any child – can be complicated. But treating our children with the same responsive gentleness, regardless of neurology, need not be the least bit complicated.
In this TED Talk, Dr. Amy Laurent explains why Autistic people need support in developing emotional skills, not behavior management:
ABA therapy is simply incompatible with Peaceful Parenting. The entire concept hinges on the adult therapist’s ability to coerce a child into compliance by withholding beloved objects and activities until the child “earns” them by obeying the therapist. ABA therapy discourages children from saying “no.” It does nothing to meet underlying, unmet needs and, instead, attempts to force children to ignore those needs while behaving as though the needs do not exist.
If you are a Peaceful Parent who is alarmed by what you’ve read, please know you and your child are enough just as you are. Your connection with your child is the key to comfort and growth. All children want to be heard and understood. Your job, then, is to learn how your child communicates and become conversant in their preferred language. Trust yourself. Trust your child. And, when you need help, find people who are willing to do the hard work of figuring out why your child is suffering and then find ways to relieve that suffering by way of accommodations and modifications. For instance, if your child hits himself in the head in the presence of very bright lights, the remedy is simple. Turn the lights down or off. When you start to see remedies everywhere, the rest falls right into place.
No Autistic child is the same and there are going to be things your child can do that mine can’t. Again, all Autistic people are different from one another. The key is learning what exactly that means for your child and filling in every single crevice in your child’s heart that is aching for your love and attention.
That includes Autistic children who exhibit self-destructive and violent behavior. Remember, all behavior is communication. If a child, any child, is lashing out, something is wrong that the child can’t overcome. Our goal as parents has to be to investigate the underlying cause of our children’s challenging behavior and help to relieve any stressors we discover.
You Want Action Steps? We’ve Got Actions Steps.
You’ll find this to be a very short section, because I’m directing you to the single most helpful post I’ve ever read on helping Autistic kids as a parent. For concrete, comprehensive details on what you can do for your Autistic child without the use of any ABA whatsoever, please read If Not ABA, Then What at The Thinking Person’s Guide to Autism. The recommendations there will support what you are already doing as a Peaceful Parent.
Careful! ABA Ideology Can Wriggle Into Other Therapies
If you’ve gotten this far, I want to make sure you know that ABA ideology has infiltrated all aspects of the way professionals care for Autistic people. Plus, because ABA is so profitable, some professionals use ABA codes to bill insurance even while they claim they aren’t practicing “traditional” ABA. However, don’t be fooled! If it’s called ABA, it is ABA. And, even if it’s not called ABA, the professional could be using ABA tactics to pressure your child into making advances. It can all be very confusing. An excellent post by Autistic Mama describes the red flags that should send you running for the door if you see them in any therapy your child undergoes. Please visit her post directly for a full explanation of each red flag.
Observation is Not Allowed
Indefinite Therapy
Extreme Hours
No Stimming Allowed
Requires Eye Contact
Excessive Reliance on Token Systems and Edibles
Rigid Approach or Refusing to Make Basic Accommodations
Focus on Outward Behaviors, Rather than Functional Skills
Expecting Kids to Perform on Command, Regardless of How Difficult Something is or Where the Child is at Emotionally
Moving too Fast or Not Breaking Down Tasks into Manageable Pieces
Learned Skills Don’t Transfer
Focus on Compliance
Focus on Verbal Communication
Punishment of Any Kind
Presumes Incompetence
You Are a Good Parent
Any parent who would go to the ends of the Earth, at any expense, for their child has earned that title. Please know my intention is not to attack you, though I understand why such an impact could result. You may be thinking that your child’s ABA looks nothing like what I’ve described or that your child loves their ABA therapist. I’m not here to argue or to condemn you. I ask only that you carefully consider the history of ABA, its inherent weaknesses, and the voices of Autistic adults urging caution.
A Thank You to All My Fellow Autistic Adults
This post wouldn’t have been possible without the labor of my fellow Autistics. You are so incredibly valuable and I appreciate you more than I can express. Thank you!
And, reader, thank you for listening.
Update (February 10, 2020): After I published this piece, it came to my attention that Alfie Kohn recently published an outstanding piece regarding new research into ABA. It’s well worth a read!
No, not that kind of grounding! We don’t do punishments around here. By special request, I am dropping a note to provide some definitions in my own words for those who are wondering. I use the terms dysregulation and grounding, in a variety of forms, to describe some of the important steps in the process of developing self-regulation.
Definitions
Self-regulation: the state of being in physiological and psychological balance without external influence. Please note that self-regulation does not mean self-control. Self-regulation develops as a child builds skills to become more able to manage stress in healthy ways. Self-control means arbitrary self-inhibition whether or not the child is handling stressors in a healthy way.
Dysregulation: an inability to sustain physiological or psychological balance due to unmanageable stressors.
Meltdown: a vigorous, externalized, emotional eruption.
Grounding: the process of bringing oneself back into self-regulation.
Explanation
Many of you may already be familiar with the concepts of meltdowns and shutdowns as they apply to neurodivergent children. Autistic kids are at an especially heightened risk of experiencing these very upsetting, very natural responses to living in a world in which they have to work every waking hour to operate within the confines of what neurotypical people consider “normal.” Anecdotally, I’ve found that autistic kids are more able to operate in neurotypical cultures when they have autistic adults guiding them. They’re less likely to meltdown or shutdown, probably because the autistic adults can better predict stressors and teach the kids how to avoid or work through them.
But, it’s not just neurodivergent kids who respond to stress by melting down or shutting down. Neurotypical kids do it too because, well, they are kids. Up to around age 25, we humans are pretty unskilled in the process of understanding ourselves and negotiating appropriate behavior. Meltdowns and shutdowns occur when children reach a point at which they are overloaded and unable to cope. The source could be overstimulation, hunger, exhaustion, or any number of major crises that a child cannot overcome alone.
Signs
Learning the signs of dysregulation isn’t an exact science. Caregivers should have a sense of what’s typical for a child in a given situation and, when things start to escalate, that’s when you know it’s time to act. Unfortunately, because of the way many of us view childlike behavior, it can be easy to brush off signs of dysregulation as a child just being obnoxious. However, behavior is always communication. A child may not be able to explain what’s happening, but their behavior can reveal the truth. Understand that dysregulation is never a choice. If you see any of these signs, or any suggestion that something is up with your child, take action.
Possible Signs of Impending Dysregulation This list is not exhaustive.
Increasing hyperactivity
Increasing vocalizations (talking, humming, other sounds, etc.)
Increasing destructiveness
Whimpering/crying/whining
Aggressiveness/anger
Unusually avoidant behavior
Unexplained mood swings
Intervention
When a child begins to dysregulate, we adults can help. We can guide our child toward grounding by gently offering techniques that soothe at a time when our kids can no longer reason through to a solution. We become their calm. Be sure to choose interventions you know your child enjoys and ask first. Consent is crucial to ensure your child feels as calm and peaceful as possible.
Possible Grounding Interventions This list is not exhaustive.
It’s easiest to decide what might work best for an individual child if we can figure out what’s wrong to begin with. If my child is just completely overwhelmed and unresponsive to conversation, my go to is always a hug, and then we might move onto other things. If I can see that my child is getting very sleepy, I try to create a calming environment and a place to rest (usually a nap on the couch if it’s during the day). If I can see that my child is starting to physically push people around, I look for ways to introduce heavy work. My response depends on putting together all the other observations I’ve already made leading up to the crisis.
Dysregulation isn’t bad. It’s a natural response that children have no control over. It’s our job as the reasonable adults we are to show our kids how best to cope and get back to a balanced position.
Following my post yesterday, I received an extraordinary message from a mom who had a story to tell about her family’s journey from authoritarianism to foster parenting to Peaceful Parenting. With her permission, I am so grateful to be able to share her story here.
I have enjoyed reading these posts on positive parenting and today’s post really resonates with me and within my family dynamics. My husband and I are both in our later 40s, and when we met, I was divorced and had a two-year-old daughter. By this time, I was co-parenting quite nicely with my ex-husband. (There was certainly an adjustment period to that though). 😬 And I had also been doing Foster Care with “High Risk” teens for 6 years at the time. (I hate that term. Always have. But the reasoning for that is because most…not all…had come into foster care due to some kind of neglect/abuse parental death or other forms of trauma). In order for my husband to move in and join our Family (anyone living in the household had to do the same) a background check, several interviews with workers along with parenting classes needed to be taken through our state.
He was in the military, had never been married or lived with anyone and had no Children of his own. He knew from the beginning (once we were serious) that my ex-husband was a very active father. The two of them had many conversations about our daughter. Although he was about to become a very important part in her life, they wanted to work together in helping raise her and they both made a conscience effort to do so. (The same happened with our daughter’s new step momma. So, she ended up with 4 parents that love her).
In Foster Parenting classes they give many conflict resolution techniques, teach about the importance of respecting and fostering the needs of each individual child, working alongside their parents (if they were trying to reintegrate…most teens were in independent living, so reintegration wasn’t common) in partnership parenting in order to help that process, and help the family and children succeed when they went back to their family or eventually moved out on their own. We were taught what normal age appropriate behavior looked like, and were encouraged to have honest and open dialogue with the children about their thoughts, feelings, emotions and needs. There was absolutely NO corporal punishment of any kind allowed or involved by state law. (As it should be). Since I was a foster parent before we had a child of our own, that’s also how we raised our child. “Peaceful Parenting” probably before the term was even coined. Lol
Anyway, our families live in different states, and I knew the first time I met his family that my daughter and I were valued and loved. This started even before we met them actually! They included us and my foster children in every aspect they could! He and I had both been raised in the Christian Faith, and many other aspects of our childhood were the same. Going to church every Sunday (or anytime there was a function) and our families socialized with other families in our Churches. It was just part of our daily lives growing up. The one difference there was that his parents were fundamentalist (meaning “old school” or law oriented) and mine were not and were/are very grace (new testament) oriented. That’s rather important in this long story. Lol.
In the 70s it was a very common “idea” that children were to be seen and not heard. Spanking (or BEYOND spanking) was never questioned. It was usually the “go-to” form of discipline. Spank first…ask questions or talk about it later (if at all). And for those of us who were involved in church (remember…that’s who all the families socialized with so it’s really all we knew) “spare the rod, spoil the child” was preached. Without any further advice or explanation that the term was actually about the shepherd and his sheep. The shepherd’s staff (rod) was used to GUIDE the sheep in the right direction in order to keep them safe…not to physically punish the sheep for “misbehaving”.
In my family, I recall being spanked as a child a few times. My mom was the “disciplinarian” of the family, but neither of them were “yellers” and she usually just talked to us if there were issues. The few times I did get spanked, she still talked and validated our feelings…but AFTER the spanking. Lol. I never have felt any anger or resentment towards her, and in truth I probably would have been the same way with my children if it hadn’t been for the parenting classes I took. It’s just how I thought it was “done”.
In my husband’s family, (he also went to private schools his entire life) getting spanked with a paddle both at home and even through high school IN the school with family members present sometimes to watch…is just how it was “done”. Not only was it acceptable…it was encouraged. The last paddling my husband remembers was at 17. (It’s called a paddling because it’s a literal paddle board). In both cases our parents absolutely believed they were doing the right thing both socially, and in the eyes of “God”. Who was and continues to be a major part in all of our lives. (My husband and I are now both Grace oriented). 😮
And in both of our cases, our parents absolutely love their children with everything in them. And that love is returned.
My husband was medically discharged shortly after we got together, and we soon found out that he has PTSD. He’s always been one to “react” to stress or certain situations in a negative way. It’s usually by yelling, “demanding” that one “complies without question” (that was partially because of the military) and generally the “just do as I say” without questioning why that certain behavior or situation was even happening. “I’m the boss…you will listen” type thing.
I’ve always been really good at setting boundaries and bringing issues up as they were happening, and I stick to those boundaries while trying to figure out the reasoning behind “it” whatever it is. I was the one that helped our older children with any major issues. If there was a high stress situation happening, I took care of it, while he would exit the room and entered again when things calmed down. I was the “defense” person trying to stop escalation before it happened. In those times of stress, many times things would escalate very quickly and extremely irrationally. Sometimes on the verge of emotional/verbal abuse towards me. For those of you who are familiar with PTSD, this is a fairly common thing. That said, PTSD is a reason…not an excuse (There’s a difference). Nobody is responsible for trauma that’s been inflicted onto them or mental illness. NOBODY. (I suffer with depression and anxiety). But it is our “responsibility” to recognize, take responsibility for and to learn to change patterns of behavior that are harmful to others.
After our second child came unexpectedly in our 40s, (we had been out of FC for several years at this point. Our last children went to college, and had started families of their own) and things went really well until our son started becoming an independent little human. When he started getting into things, walking, talking and all that comes with growing up (Our son is high needs. He has ADHD, sensory issues and is in the evaluation process for autism. Life with a high needs child can be challenging on top of typical everyday growing up that all children go through) so those “high stress” incidents started happening more and more out of frustration.
One day in a high stress situation, he snapped. There was
screaming and no rational thinking process in sight. And this happened in front
of our son. It was one thing for me…an adult who can speak for myself and has
extensive knowledge in how to de-escalate/manage certain behaviors…but it’s
entirely different when a child is subjected to that kind of behavior…if its
intentional or not. So, I made the decision that day and told him that if this
behavior continued, I would divorce him and would do WHATEVER it took to
protect our son. Protect him from thinking this was “normal”. Protect
him from thinking that this is how we treat those that we love etc. Abuse is
abuse…if its intentional or not.
My husband knew that wasn’t a threat. It wasn’t just some
kind of manipulation to get him to stop. He knew I was absolutely serious
because of my boundary setting and following through. Thankfully he took me
seriously and chose to do whatever it took to LEARN different behavior.
So, for the past several years I’ve witnessed him researching developmental stages and age appropriate behavior in children. I’ve seen him take charge of his mental health and seek out different strategies on how to unpack issues in his own life, and learn how to cope in productive ways. I had bought an extensive online course on Positive Parenting, and he took the time to go through all of it. (Sometimes more than once). I’ve witnessed our family becoming a cohesive unit that tackles challenges together. There’s no more “running defense” on my end. I’ve witnessed the relationship between son and father go from frustration and overwhelming…to a relationship of understanding and peace. Naturally there are still challenges and high stress situations…there always will be. That’s life. But life looks and IS so much better for all of us now.
So, I completely understood what was written here in this post. Going against what we knew as “normal” and learning a different way to handle issues within the family unit…and hopefully our children won’t have to “reprogram” themselves later in life like we’ve done. Has it been easy? Absolutely 100% no. Was it worth it? Absolutely 100% yes!! ♡ So thank you for sharing this with us so we don’t feel so alone in our parenting journey.
![The Autisticats
@autisticats
Autistic people, like Deaf people, are a sociolinguistic group with our own culture and norms of communication.
The communicative burden in conversation between autistic people and NTs [neurotypicals] should not fall solely on autistic people.
Communication requires effort on all sides.](https://peaceigive.files.wordpress.com/2020/12/autisticats.jpg?w=941)
PEACE I GIVE 