April 2, 2024 is World Autism Acceptance Day

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Much of what we read in terms of Autism acceptance and awareness is focused on parents of autistic children, and the struggles that they face in parenting. While this may be helpful to the parents themselves, it can often leave people who are actually autistic out in the cold, and feeling like they are voiceless.

The White House issued a proclamation yesterday in honor of World Autism Acceptance Day, where President Biden says:

 I call upon all Americans to learn more about autism to improve early diagnosis, to learn more about the experiences of autistic people from autistic people, and to build more welcoming and inclusive communities to support people with autism.

This is an admirable goal of the president's administration to advance inclusion for people with autism. Everyone is worthy of dignity and respect, and having their voices heard. Everyone deserves fair treatment within society, and people with autism are often marginalized and have trouble seeking education, employment, and other issues.

When I first wrote about Autism Acceptance Month in 2022, I didn't really know a lot about autism. I knew some of the common stereotypical misconceptions that society has about people who are autistic. So, I made sure to read about and research experiences of people with autism in their own words.

What I learned was eye-opening for me in many ways, and made me realize that I may be autistic myself. As a small personal victory, I have finally (2 years later!) been able to schedule my own Autism assessment for May 23rd. I hope that the experience will be able to shed some light on my own experiences and bring me a sense of clarity, whatever the results.

April 2022 is Autism Awareness Month, it Made Me Realize I May Have Autism

During the course of the last two years, I have been learning as much as I can about autism, and it's effects on daily life. I have joined FaceBook groups for autistic women, and a lot of what they say resonates with my own experience.

Autism has a tendency to be under-diagnosed in women, and many of us are just finding out as adults that we may be autistic. A lot of late-diagnosed autistic adults come to realize that they have autism when they have a child who is diagnosed, and then they start thinking, "I do all those things, too."

According to Scientific American, the prevalence of those diagnosed with autism has increased over the years. As of their 2017 study, 1 in 68 US children is diagnosed with Autism. Back in 1966, it was estimated that only 1 in 2,500 children was autistic. Changes in the way that Autism is diagnosed and treated likely contribute to these statistics.

Autism wasn't even in the DSM until 1980, so before that time many people were either incorrectly diagnosed or institutionalized and kept out of sight and out of mind. This was typically those who had the most identifiable symptoms. That means, a lot of us were never diagnosed in childhood due to lack of awareness, and those that were didn't receive the best of care.

Today, all that is changing as more people with autism are speaking up for themselves, and advocating for changes in the way that society treats people who are neurodiverse (how many with Autism and ADHD refer to themselves) with the acceptance that so many have lived their lives without.

According to Rooted in Rights,

We need autism acceptance because autistic people are at a higher risk of homelessness, substance abuse, unemployment and underemployment, incarceration, domestic violence, and other systemic issues that exist because we live in a society that doesn’t accept autistic people. We need autism acceptance because Applied Behavioral Analysis is still a leading therapy for autistic children, despite how many autistic activists have talked about how cruel the practice can be. We need autism acceptance because autistic kids and adults are punished by the education system just for being ourselves—like when my elementary school teachers forced me into time outs because I wasn’t capable of doing my work without stimming, a repetitive movement common in the autistic community that allows me to focus my creative energy and mitigate any sensory overload.

Just because we are different, it doesn't mean we are bad. We aren't wrong, or weird, and we should be accepted as we are, instead of constantly feeling a pressure to mask our autism in order to be socially accepted. Instead of being an ableist society that treats anyone who is different as lesser, we need to move into a more inclusive way of thinking, and treating others.

Many people with autism mask their symptoms, to be socially accepted by others. This is especially true of women and girls, who historically have been less frequently diagnosed with autism. However masking symptoms doesn't make them go away, it can in fact lead to additional mental health issues or burnout because of the mental toll it takes when you "try to act normal" by mimicking the way your peers behave.

According to Neurospark Health,

Autistic people who can easily mask their autistic traits are sometimes called “high-functioning.” The term “high-functioning autism” is problematic and offensive in reference to autism in general. First, it is demeaning to people who have more support needs and implies that they are “low-functioning,” or less-than. Some autistic people on social platforms have compared functioning labels as if human beings are being equated to a piece of machinery (e.g., This car is not functioning. This computer is not functioning). It’s not a kind way to refer to real people living human experiences. Second, it implies that people who mask their autistic traits do not still have those traits. It also takes away from the experiences of autistics who may outwardly appear to have lower support needs, but are very much still experiencing valid and significant struggles that people don’t recognize. "High-functioning autism” in women is something that absolutely deserves discussion. However, it can be framed in a better way. High-masking is a more accurate term; it captures the way autistic individuals can conceal the signs of autism. High support needs and low support needs are some alternative terms to functioning labels, even though they still don’t capture the complexity of their experiences on the spectrum. It is vital to challenge outdated terms while shedding light on the complex and diverse experiences of autistic women. Overall, the best way to describe someone is to do exactly that — describe who they are, their individual strengths, differences, challenges, likes, dislikes, needs, and behaviors, without relying on a judgment-based label about how much they can or cannot achieve.

When there is a lack of social acceptance for you the way you are, there can be a lot of social pressure to mask your differences. This is something a lot of autistic individuals experience. Even today, much of the literature about autism, and the ways that autism is treated focus on trying to get autistic individuals to "act normal" and blend into society as a whole.

This type of therapy makes it the autistic person's job to act like everyone else, instead of allowing their own needs to be heard, understood and met.

Applied Behavior Analysis (ABA) is one of the most commonly used therapies for Autism, although autistic adults are speaking up against the harm this therapy has caused them. WebMD explains ABA like this:

This type of therapy uses rewards to reinforce positive behaviors and teach new skills. Parents and other caregivers are trained so they can give the autistic child moment-by-moment feedback.

When you think about it, this is akin to the way Pavlov trained his dogs to salivate to hearing the sound of a bell. It is dehumanizing to autistic people, and attempts to force them into a social script that may not be a good fit.

According to Springer Link, a 2022 study on ABA has shown that:

Research in ABA continues to neglect the structure the autistic brain, the overstimulation of the autistic brain, the trajectory of child development, or the complex nature of human psychology, as all of these factors were ignored in the response and are ignored in ABA practice itself. Providing a treatment that causes pain in exchange for no benefit, even if unknowingly, is tantamount to torture and violates the most basic requirement of any therapy, to do no harm.

Their findings conclude that Long-term ABA Therapy Is Abusive.

This is because ABA is a parent-focused therapy with the aim of making the child behave normally. It is a therapy that is aimed at fixing children's behaviors that are deemed as problematic to others. Basically, it is teaching autistic kids to mask. It is teaching them that who they are is wrong, and that in order to be deserving of love, kindness or respect, they have to be something else.

According to Neuro Classic,

Whenever autistic people protest ABA, we are told that we don’t understand, that we don’t know how hard autistic children are to live with. They talk about improving the child’s independence and argue that it isn’t cruel to teach a child to write or play with toys.

They don’t see how weird it is to try to systematically shape a child’s behaviour to teach them to play with a toy the “right” way.

They don’t see that 40 hours a week of brainwashing a child to put up with stress and discomfort without expressing their feelings might be a bad idea in the long run.

They don’t see how wrong it is to teach a child that their way of feeling comfortable and soothed is wrong and that ignoring your feelings and physical needs is good and gets you approval from your teachers and parents.

They don’t see that it is abusive to ignore a child’s attempts to communicate because they aren’t “complying” with a demand that makes them uncomfortable.

They don’t see how dangerous it is to teach a child to do whatever they are ordered to do, no questions asked, and to never object or say “no.”

They don’t think about the fact that 70% of people with ASD have experienced sexual abuse by the time they are college age.

They don’t think about how this person will learn to stand up for themselves or advocate for their needs when they were systematically trained in preschool never to disagree, speak up, or disobey.

These are poor little children who are being taught to sit down, be quiet, and do what they are told. Always. They are being taught that other people are more important than they are. They are taught to please others at all costs. That their feelings don't matter. That they don't matter.

My mother didn't put me through ABA as a child, but I learned those lessons all too well just the same. I learned from a young age that only some people matter, and that for whatever reason, I wasn't one of them.

Parents of Autistic Children

Over the years, much of the literature on autism has focused on the parents, not on the children themselves. They talk about parents mourning their child's autism diagnosis, almost as if the child has died.

There is extensive care and resources available for parents grieving their child's autism diagnosis. There are whole organizations and support groups for this.

According to Circle Care Services:

When a parent receives the news that their child has been diagnosed with autism, it can be a tough and heartbreaking moment. There is a deep sense of grief that comes with this diagnosis, as it often changes the life pathways of the child and the entire family. Parents may grieve the loss of the life they thought their child would have and the dreams they had for them. They may become overwhelmed by the challenges and responsibilities that come with raising a child with autism, including finding therapies and treatments that will help them succeed. Additionally, a feeling of isolation and helplessness can come with this diagnosis, leading to profound sadness and grief. These emotions can be complicated to process and understand, making it important for parents to seek support from other families and healthcare professionals. 

The article then goes on to describe the five stages of grief that the parent will go through with regard to their child's autism diagnosis. Here, and in many other spaces within the "autism community" the focus is on the parents' feelings, wants and needs. No where does the article speak to the child's feelings at all.

But how is a child supposed to feel if their parents are grieving for them as if they were dead? Is their life just going to be all sunshine and roses if their parents see them as a burden, a project, or a problem to be fixed? Doubtful.

Hopebridge Autism Therapy Center also talks about how parents will go through Cyclical Grieving throughout their child's life:

There is a related, yet distinct situation referred to as “cyclical grieving” that occurs in parents of children with special needs such as Autism. Here, the word cyclical is used to describe the reoccurring aspect of one or more emotions that are part of the initial grieving process. These emotions include, but are not limited to: anger, anxiety, denial, depression, disbelief, frustration, guilt, helplessness, loneliness, nothingness, sadness, and shock. Parents experience cyclical grieving intermittently throughout the lifespan of their child.

Wow, Mom. Sorry I was such a constant disappointment to you that you are constantly grieving over what you wanted me to be. Sorry I am not meeting my milestones on time, or meeting your needs.

In all of this literature, parents of autistic children are being treated like they are objects of pity.

According to Autism Parenting Magazine:

Autism Parenting is the world’s hardest job!  It comes with immense responsibility in which you are on call 24/7, incessantly worrying, and using all your time and energy working at a “real job” without getting a real paycheck.

There is all this advice out there for autism parents to take time for self-care, join support groups, and go to therapy. What about loving and accepting your child as they are? Why do you have to grieve your child's diagnosis? Why can't you love them when they are 'different' then their neurotypical peers? Why can't you look for good qualities they possess and play to their strengths?

RDI Connect makes the problematic statement that:

Developmental scientists have long noted that if infants do not contribute sufficient energy to their relationship, parents are unable to compensate and the relationship cannot develop in a normal manner. Even highly motivated or proficient parents cannot overcome this obstacle.

They are going so far as to blame infants for not interacting enough with the parents to cause the parents to be responsive. Is it an infant's job to get their parent to take care of them and meet their basic needs?

Actually Autistic

With so much of the focus in Autism research being aimed at the parents instead of the children and their wellbeing, adults with autism are now speaking up for themselves, and advocating for their own needs. This has created a schism in the online community between "Autism Moms" and Autistic Adults.

As Stephany Brittany puts it:

Because of previous experiences with autism moms who have developed negative relationships with their child, the term “autism mom” often draws the ire of autistic adults online. The online community of autistic adults tends to think of autism moms as mothers who do not understand their children well, use their child’s identity to garner sympathy for themselves, and in general seem to be attention-seekers wanting to normalize their burden of a child.

People with autism don't want to be treated like they are a burden. NO ONE wants to be treated like they are a burden. Asserting your needs, your rights, and your desire for a life where you can be accepted in society isn't something that anyone should be shamed for.

People with autism are tired of being shamed and shoved into a corner. Or an institution. We want to feel like we can live meaningful lives. That we deserve all the same rights as anyone else.

This brings us to... the Autism Wiki, by Autism Advocacy:

#ActuallyAutistic is a hashtag used by the autistic community.

The #autism hashtag lost support amongst autistic people since it was dominated by friends or family of autistic people to the exclusion of autistic people themselves, and often featured hateful remarks about autism, pictures of autistic people posted without their permission, or posts from Autism Speaks (commonly seen as an enemy among autistic people).[1]

A lot of the work that needs to be done in terms of autism advocacy and acceptance needs to come from the way autism is treated, as well as the focus in the research and literature on autism parents instead of people who are actually autistic. Voices of parents are drowning out the voices of their children, and this has a myriad of repercussions, long into adulthood.