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March 5 - March 15, 2023
Non-autistic parents of autistic children need to internalize the fact that, overall, autism is not inherently some dreaded, terrible affliction that has “stolen” the lives of your children and mine—even though you might perceive it as such sometimes. Neither is it inherently an enviable “superpower” that makes autistic people superior to others, even though you might perceive it as such sometimes. It’s a different type of neurology, and it is a part of your children—and mine—that will exist as long as they do. How that appears and how it impacts their daily reality might look different at age
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No matter how much advocacy you do and how much you care, that parent and their children are a package deal, period. You share the children’s neurology, yes, but you will never supplant the parents’ roles in these children’s lives; they are family, and always will be.
This isn’t a book to promote toxic positivity and proclaim that this is a time for healing division within the greater autism community. This isn’t a time for healing, it is a time for productive conflict. Children’s lives are at stake. If we choose to, we can demand equity and justice unabashedly, privileged feelings be damned. If we choose to, we can engage in conflict in a way that builds relationships and invites others to join us in our work. And we can do both, at the same or different times, as we see fit and are able.
Cognitive empathy is the type of empathy that SBC and his colleagues were actually researching. It’s the ability to predict someone else’s thoughts without them telling you.
The autistic community is experiencing a safety crisis. Autistic people experience unacceptably high risks of education disparities, restraint and seclusion, poverty, homelessness, domestic violence, out-of-home placement via the child protection system, medical kidnapping, medical abuse, police violence, emotional, physical, sexual abuse, and filicide. The risk of state violence is amplified for autistic people of color. These aren’t hypothetical far-off concepts to me. This is real life. Within my friend group, I could name someone who has been impacted by each horror on that list.
People labeled as “high functioning” are those who can contribute to capitalism.
In practice, a social model of disability referencing a relational worldview would treat an autistic child quite differently than we currently do. The social model would explore a child’s needs in a way that builds trust. Sure, an evaluation will be necessary, but it would be completed in a way that builds trust with the child. Rather than using deficit-based language that makes children feel bad (yes they hear it, and yes they feel bad), evaluators would use affirming, strengths-based language while identifying needed support.
Interventions would be based on helping the child find balance within their physical, emotional, intellectual, and spiritual well-being.
Whereas in a Relational worldview, a goal may look like: “Disabled people will be welcomed and integrated into our community, our community will ensure their needs are met, we will learn from one another, we will co-regulate when distressed, and we will live a good life together. We will appreciate the contributions of everyone and provide the support people need to live a balanced life.”
There’s a broad misunderstanding of equity. Equity is not the same as equal access. That’s equality. Equity is not removing barriers so everyone has access to the same systems. That’s accessibility. Equity incorporates equality and accessibility, but it goes further. Equity is more nuanced and needs to be incorporated in all stages of planning and implementation of all decisions, systems, programs, and services.
Predominant culture demands we strive to be “as independent as possible,” whereas many of us view “self-determination, with support” as the goal. We live in an interdependent society, and it’s okay for disabled people to need support in order to live their best, and most integrated, lives.
From the beginning, families are fed a doom and gloom narrative, told to immediately engage with “early intervention.” These interventions are built upon a generic framework associated with the word autism, deeply rooted in behaviorism and delivered by occupational therapists, speech pathologists, and psychologists. Behaviorism urges a focus onto the autistic child’s outer expression. The child’s communication—the byproduct of a rich inner world filled with beauty and intricate, overlapping sensory experiences—those experiences are not of interest to the early intervener. This communication or
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I had a wild idea that I might research what autistic adults actually felt about that same therapy. I was devastated by what I found. Significant, intergenerational, prolonged trauma and posttraumatic stress. Autistic children, groomed for predators via the therapeutic approach to turn their No to a Yes.
My misgivings about autism were only magnified by the professionals who worked with my children and their insistence on not bringing it up.
There needed to be some kind of plain language and non-stigmatizing way to describe autism, because not every parent sees their child as a sum of their deficits.
My skepticism was more of an instinctive refusal of the idea that the construct of autism as a tragedy could ever fit into our lives. My children are gifts, not burdens. Even on the most difficult days, I felt that I was the one failing, never them.
My so-called flat affect or resting-bitch-face made me seem unapproachable to others, and on the rare occasion that I made a friend, they would tell me, “I thought you were a bitch until I got to know you.”
Autistic children would benefit from parents taking time after their children’s autism diagnosis, before committing to any therapies or interventions. Be sure to get a variety of perspectives, as the autistic community is not a monolith.
Research is now slowly starting to catch up with autistic people in its recognition and understanding of things which autistic people have been discussing for decades: autistic masking and burnout, that communication is generally freer and more effective amongst autistic people, that functioning labels are harmful, that we do in fact often have buckets of empathy and that we don’t have extreme male brains.
We bridge that gap by parents recognizing that currently autistic people, a traumatized and marginalized group, are currently doing all the heavy lifting, by autistic people recognizing that parents are traumatized and victimized, just in different ways.
For those labelled high functioning, it can be incredibly difficult to get external support once diagnosed… High functioning is not how an autistic person experiences being autistic. It’s how society experiences the autistic person…
Learning about ableism took me down an uncomfortable and slightly confrontational path. If you had asked me before entering these autistic-led spaces, I would’ve sworn up and down that I didn’t have an ableist bone in my body. But these autistic adults challenged my views in a way nobody else could. They called me out on using phrases like diff-ability and differently abled. They suggested that I preferred those phrases because somewhere deep within I viewed disabled people as less-than. They said that using those words was my attempt to make my children seem more valuable, whether I realized
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I knew from day one that the little tidbits of information TopDoc fed me didn’t sit right. When he handed me that script for ABA without offering one single apprehension about the intervention, my Spidey-senses started tingling. If I didn’t know anything else, I knew developmentally appropriate practices. There is nothing—and I mean nothing—appropriate about a toddler sitting at a table to work, forcing them to perform tasks, and ignoring their protests (NAEYC 2020a). While I may have lost confidence in myself as a parent since Jay’s diagnosis, my bullshit-o-meter wasn’t completely broken.
Unlearning is hard. It’s painful. Quite frankly it’s embarrassing. So why on Earth would we subject ourselves to this process? The answer is simple: We do it for our kids.
As a parent, I understand how completely lost many feel when they want what’s best for their child, but they don’t know where to begin. As a disabled person myself, well-meaning parents can be the most frustrating roadblock against any kind of progress toward disabled people living better lives. While there’s no specific checklist that we reference to measure whether a parent is supportive of autistic liberation or subjugation, many autistic adults observe patterns of parent behavior that might lead us to feel cautious. When autistic advocates come across a parent who has demonstrated a number
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The autistic community is angry, and we have a right to be angry. Autistics are tired of combating billions of dollars and decades of hate speech and misinformation, just to be seen as people, and not objects or projects. We regularly experience abuse and oppression, while simultaneously being placated. We are tired. We are tired of having the same conversations with new people who have been taught the same ableist “autism awareness” trope that we are puzzles. We’re not puzzles, we’re people.
What many parents don’t know is that “autism moms” have historically combated the autism that they felt took their children away from them, as if we are infected by a disease that can be beaten if they just fight hard enough.
Perhaps one of the most frustrating parts of the term “autism parents” or the more gendered variants “autism mom” and “autism dad,” is that many of these parents elect to use identity-first language for themselves, while denying autistic people use of identity-first language for themselves.
This exchange left me annoyed, because autistic people should both be supported in our language choices for ourselves and have access to the more clear language. I choose to use identity-first language for myself, I’m an autistic person. If others choose to identify as a person with autism, that choice should be supported too. In any case, the only people who have a right to claim an identity related to autism are autistic people. By hijacking our identities, autism parents muck up language. I am not a “mom with autism with children with autism.” I’m not an “autism mom with autism.” I am an
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We’re tired of being treated like the enemy because we happen to share a diagnosis with someone’s child, and that someone is angry about the circumstances of their parenthood. We’re not the enemy. We want your child to grow up in a better world than the one we grew up in. We want to prevent your child from being harmed the way we were harmed.
I have always struggled because of my autism. But I also have a gorgeous universe in my mind, so many colors and sensations and connections and delights, that I know are precious gifts of autism. My depths of feelings, my immense capacity for love and compassion, my hyperintelligent brain, my beauteous way of seeing the world—that is my autistic way. But that part was hard to see from the outside, from my body disconnected from my core mind, from my unreliable and minimal speech.
Autism Speaks is by far the largest, most influential autism company in the world (Reiland 2021). They brought in just over $94 million in the 2020 fiscal year
A couple of my personal favorite autistic-led organizations are Communication First and the Autistic Women and Nonbinary Network (AWN).
When parents first learn about autism, information we consume is all over the place. When my own children were diagnosed, the doctor’s office had a booklet for parents new to the diagnosis. It included the five stages of grief. Here are just a few sentences pulled from that section (Autism Speaks 2014): It is painful to love so much, to want something so much and not quite get it… Many parents must mourn the loss of some of the hopes and dreams they had for their child before they can move on. There will probably be many times when you feel extremely sad. Allowing yourself to feel sadness can
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The ongoing narrative that autism is an entity separate from the person distracts parents from learning how to support their children. Deficit-based assessments of autistic children only add to the confusion. As I mentioned in Chapter Five, autism is not a behavioral diagnosis. It’s a neurodevelopmental diagnosis, which means it stems from within a person’s nervous system. Autism isn’t “a thing” that is separate from the person, like a freckle. It’s all-encompassing. It’s a way of being. Our children think autistically, feel autistically, live autistically.
When they grow up, they’ll be autistic adults just like the autistic adults I learn from now. Many of them use AAC devices to communicate, just like some of our veterans with traumatic brain injuries. Others use incontinence supplies, just like millions of other adults. Lots of our kids will require support when they grow up, and that fact isn’t autism specific. I’m not sure who created the goal of “being independent,” but I’m almost certain they had help.
Meeting our children where they are doesn’t mean giving up on them. It means seeing them as a whole person, broadening their access to communication, helping them figure out their unique learning styles, helping them figuring out their sensory profile, and putting accommodations in place. When we work with our children instead of against them, instead of trying to fix them, we end up with happier children. And that is a goal worth striving for.
I wished the other adults could be helpful. I wished other adults knew how to communicate with my son in a way that de-escalated conflict, built relationships, and helped him learn. The power struggles instigated by adults with the attitude that children should comply “because I said so” only made things harder.
I didn’t understand why people insisted on obedience without teaching or reasoning with a child. Their choice to engage in power struggles, rather than meeting him where he was at, rather than providing support, rather than developing inclusive relationship-based interventions, resulted in 169 pages of behavioral referrals in two academic years.
This type of restriction—prohibiting parents from being paid as caregivers—is rooted in colonial-capitalism, and is a prime example of how systems aren’t designed to support disabled people and their families.
Caregiving is exhausting. Our society’s devaluation of disabled lives results in the devaluation of the work that caregivers provide. That’s the root problem. Caregivers are often invisible, under supported, unpaid or underpaid, and overworked. If it takes a village to raise a child, it takes an intentionally inclusive village to raise a disabled child. Disabled people will always exist. Disability is a natural part of life, and disabled people and their families have a right to inclusion. Our children should not bear the weight of our societal shortcomings.
There’s no common definition of appropriate. While I view it as meeting the child’s needs, many school systems view it as making the child behave appropriately, even if the child can’t.
Behaviorism is a multi-billion-dollar industry, complete with lobbyists and government funding. No matter how loud autistic people shout against it, our testimonies are no match for that type of influence.
ABA subjects autistic children to behavioral interventions for hours each day. It’s dangerous and traumatic for autistic people, teaching them that their feelings and opinions don’t matter. Compliance and performance on demand are rewarded, which grooms children to suppress their natural instincts.
Parents are the customers. Doctors are the sales force. Behaviorists are the factory workers. ABA corporations are the profiteers. Children are the collateral damage. But who cares, because they’re damaged anyway, right?
Learning from autistic people of color will lead to liberation for all autistic people. Here’s what Cheyenne Thornton (2021), a Black autistic advocate, has to say about ABA: There are ABA professionals who push the need for ABA due to dangers faced by autistics of marginalized races and ethnicities. They argue that it’s necessary for Black, Indigenous, and other minority neurodivergents (NDs) to learn to mask because it will make life better or safer when facing law enforcement or racial tensions. I can say with 100% certainty that this is complete bullshit—not to mention racist. A lifetime
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law enforcement officers are trained to believe, without scientific basis, that common autistic traits are seen as “pre-attack indicators”
Nobody around me seemed to think I was capable of that kind of expressive language, so I figured they must be right. When I came across someone who tried to challenge me, held higher expectations for me, it just made me frustrated. Didn’t they know I wasn’t able to do what they were asking? I was used to the kind of support where someone just took over a task for me completely. It had taught me to simply wait and let others do things for me. I was not so much an active participant in my own life as I was an observer.
I would love to see parents embrace this concept of dignity of risk and allow their children the right to take chances and make mistakes. I would love to see parents recognize that their children are capable of wonderful things, and the things that they are capable of matter much more than what society says they “should” be capable of. Every person is able to express autonomy and deserves the right to do so. Autistic lives like mine are not a tragedy, but when you take away someone’s right to direct their own life on the basis of their support needs, you take away their ability to live the
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Reading this book, it may seem like I despise all doctors—I assure you that’s not the case. I simply have an aversion to mediocrity. Doctors hold positions of power and dominance over the people in their care. They are gatekeepers of services, medications, and information. Their credentials grant them the authority to make life-or-death decisions, and their directives often go unquestioned. With that power comes great responsibility, so my expectations are uncompromising.
