congrats, you’re autistic

I was recently diagnosed with autism. This wasn't something I ever had on my radar, not until I met my new psychiatrist, who after going into my family history of mental illnesses and disorders, and after ruling out other possible disorders/ determining I had ADHD, thought it wouldn't be a bad idea to get tested. I agreed, because I figured it would come back I wasn't autistic, only that I am depressed and anxious, and lack all the executive functions and have zero attention span and obsessive compulsions.

But lemme tell you, this was not a fun process. I told my psych, I was okay never knowing after my first eval with another psych. That appointment ended in seconds with her saying, 'there's no way you can be autistic. You haven't licked my desk.' So, yeah. Not the best start on this quest for answers. I've read so many horror stories of adults getting this same type of treatment when seeking answers. Many adults who are seeking answers have the same stories, either their parents just thought they were a little weird, or doctors said they were all the other disorders when tested during childhood. Just not autistic. I fell under the all the other disorder categories.

I am, in fact, anxious and depressed and all that other fun shit, but all those symptoms cohabitate comfortably under the umbrella of autism. Which I knew after delving into everything autism after Sabin's diagnosis. I just hadn't connected those dots for myself.

And man, the dots do be connecting now, fam. As I look back on my life, all the horrible things children said to me, all the remarks friends made about me, all the whispers strangers whispered about me, it all makes sense.

I wasn't a weirdo like those kids said. I was just an undiagnosed autistic trying to navigate a neurotypical world. I wasn't a recluse/prude/tease who didn't want to party and hang with her friends and all those boys, I was just an undiagnosed autistic trying to figure out why my wants and needs weren't the same as my peers. I wasn't a rude bitch who ignored people when they talked to me and played dumb by asking stupid ass questions over and over, I was just an undiagnosed autistic who would sink into an un-impenetrable tunnel in social settings to cope with the over stimulation which made it hard to pick up on social cues and listen/communicate.

I recently had to write a paper about a disorder for my health class, and in honor of my recent diagnosis, I chose autism, mostly because my health professor called autistic kids weird, and I wanted to challenge her ableist views. This paper had many rules, which sites we had to reference, and only allowed to reference psych opinions, and I followed that to appease my professor, but I also added autistic voices and advocates as a second part to the paper. This may put me at risk for failing because I did not follow the directions exactly, but I'm willing to fuck around and find out. I hope my professor drops the 'autistic kids are weird' lesson for her next class.

Here's the paper for those who are interested in seeing me fuck around to find out...

Autism Spectrum Disorder

Autism spectrum disorder or ASD, is defined as a neurodevelopmental disorder that impacts communication, social, and emotional interactions for the individual. Autism traits can include, patterns of behavior that are often repetitive, obsessive interests, and sensory regulation issues. Spectrum, in Autism spectrum disorder, indicates the vast range of an autism diagnosis when it comes to the severity of the disorder and the presenting symptoms. Asperger used to be a diagnosis used for mild cases of autism but has since been excluded as an official diagnosis from the DSM-5. Since 2013, Asperger’s has fallen under the umbrella of an ASD diagnosis. (Mayo Clinic)

Autism is four times more likely to present in boys than in girls. Autism prevalence has been reported as similar across all socioeconomic, racial and ethnic groups, save for some slight variabilities that are leading to more research. It is reported that one in forty-four children are autistic, with the median age of diagnosis being between 36 months and 63 months. (CDC)

Autism symptoms vary depending on severity and are unique to the individual. No two autistic people are alike. Some typical signs of autism in children can include, difficulty making eye contact, unresponsive to their name being called out, spinning (sensory seeking behaviors) hand flapping, inability to verbally communicate, and in some cases, regression of skills that were present for a short time, like speaking and social interaction. (Mayo Clinic)

Autism is not known to have a singular cause. Considering the range in severity and symptoms, and the complexity of the disorder, there can be many causes, including genetics and environmental factors. There have been a variety of different genes that appear to be involved in autism. In some cases, genetic disorders play a role, like Rett syndrome or fragile X syndrome. Genetic mutations can increase the risk of autism for some children. Environmental factors are still under research in relation to autism, and how they factor in to causing autism. Medications, infections, air quality and pregnancy complications are factors currently being researched. Some other risk factors being researched for autism include, family history, sex of the child (boys are four times more like to present with autism than girls), comorbidities with other disorders, preemie babies born before twenty-six weeks, and the age of the parent at time of conception. There is no data or evidence that associates autism and vaccines, and studies that have found a link were determined to be flawed. (Mayo Clinic)

There is no cure for autism, but there are many treatment options available. Early intervention has shown to be more effective in children with autism than later intervention. Behavioral therapies, such as ABA, focuses on training the child to act appropriately in social situations and is based on a reward/punishment system. The effectiveness and efficacy of ABA, however, has been challenged by autistic advocates who were treated with ABA as children. Other, less invasive therapies include speech therapy that can benefit a child who presents with no verbal communication skills. Occupational therapy can be utilized to help develop gross and fine motor skills, as many children with autism have poor spatial awareness, and difficulty with self-care tasks such as brushing teeth. The effectiveness of these therapies varies depending on severity. There are currently no medications available to treat autism, but children who present with comorbidities such as ADHD or anxiety, may be prescribed medication to help control those symptoms. (Mayo Clinic)

The course of autism disorder is greatly dependent on the individual’s needs being met and access to care and support, not only for the individual but for the caretakers as well. Autistic individuals require ever evolving and personalized services to help them thrive. Behavioral, speech and other therapies are only effective if the accessibility is there. Care for an autistic individual reach beyond their home, and it is vital for them to be met with support and inclusivity in all areas of their life. Autistic individuals have shown to have a higher rate of un-met healthcare needs compared to the general population. When needs aren’t met because of accessibility issues, autistic individuals are more vulnerable to injury due to unawareness of danger and inability to communicate needs, and/or sickness. (WHO)

…

Now that I have presented the required autism information via expert opinions, I would like to present in this paper, autistic voices, and advocates for autistics, some of whom are not experts in terms of degrees, but experts in terms of being autistic, which I believe as an actually autistic individual and mother of an autistic child, holds great value and information when speaking and writing about autism.

Most experts present autism as a spectrum, but explain it more in terms of a gradient, and in doing so, it perpetuates the idea that an autistic individual is either not autistic enough or just autistic enough to receive a diagnosis and access to care in terms of referrals to therapies. Autism is seen as one condition to the general population and in the medical field, but it is a vast array of interconnected neurological conditions that makes it impossible for experts to dissect. (Neuroclastic.com/C.L. Lynch)

“People think you can be “a little autistic” or “extremely autistic,” the way a paint color could be a little red or extremely red.

Pragmatic language, social awareness, monotropic Mindset, information processing, sensory processing, repetitive behaviors, neuromotor differences. All autistic people are affected in one way or another in most or all of these boxes -a rainbow of traits. If you only check one or two boxes, then they don’t call it autism– they call it something else.” (Neuroclastic.com/C.L. Lynch)

Autistic individuals can check one or two boxes or ten, and that pushes them into the classifications of high and low functioning, but these classifications are flawed because they do not take into account that someone who may be verbal and has the ability to appear normal in social situations(i.e. masking), is classified as higher functioning, yet still struggle greatly with executive dysfunction, among other deficits in neuro functions.

I am able to mask, appear normal in social settings, I have trained myself to make eye contact, and I am verbal and what some would call socially adequate. I am classified as high functioning, but my ability to regulate emotions that lead me to burning out and feeling overwhelmed is non-existent. My executive dysfunction has been shown to be 85% higher than that of a neurotypical person, but I’m still considered high functioning to a medical expert. My presenting symptoms made it impossible for an autism diagnosis to happen in my childhood (girls have been more likely to be misdiagnosed with a mental illness, such as anxiety, when presenting with autism), which would’ve helped me function greatly through school and life in general. I did not receive a diagnosis until my late thirties, and even that was a traumatic task. One doctor said to me “there’s no way you can be autistic, you haven’t licked my desk.”

These interactions have left me hesitant in sharing my diagnosis publicly, the gross treatment I’ve been exposed to by medical professionals and how they have presented and stigmatized what autism looks like is incredibly damaging. I have no doubts when I make my diagnosis public knowledge, there will be people thinking “she doesn’t look autistic. She doesn’t act autistic. Why did she wait so long to get a diagnosis? I bet she pushed for a diagnosis for insert all the stigmas related to those seeking diagnosis as adults”. But all I can do is write papers and constantly advocate to dispel these stigmas and hope it changes something.

Even in the medical field, where experts are supposed to be the ones with the knowledge, there’s still so much misunderstanding, ableism and lack of knowledge that leads to stigmas and lack of vital treatment for autistic individuals.

Not only do autistic individuals face ableism in the medical field, they are pushed into treatment with ABA, that has been lauded as the most effective treatment for autistic individuals by medical professionals. In many cases, ABA is the only therapy offered by some insurance companies, and more effective therapies like speech and occupational require jumping through hoops to get referrals and services, which can take months to get. What they don’t tell their patients, or the parents, is ABA achieves desired results through traumatic experiences for the individual. Instead of understanding the child’s underlying needs, ABA trains the individual to hide those needs in order to gain approval or “earn” their favorite things. It leaves them invalidated, susceptible to grooming/abuse, and less able to understand and advocate for their needs.

Many autistic adults have spoken out about how ineffective and traumatic their experiences with ABA were as children, and the department of defense released a report on effectiveness of ABA, showing out of 709 autistic individuals in ABA therapy, 76% of them showed no improvement after a year, and 9% were worse off. (TherapistNDC.ORG/\Barry R. Nathan, Ph.D)

Stigmatization of autism is one of the greatest forces working against autistic individuals thriving and receiving proper care in the medical field and in the community. These stigmas have not only been perpetuated by the medical community at large, but they have been perpetuated by organizations that falsely claim to be in the business of serving the autistic community.

Autism Speaks, for example, is one of the most widely known autism organizations. They do a “light it up blue” fundraiser every April for autism awareness, and the general public hands over all their money under the assumption that Autism Speaks is actually doing something good for the autistic community, when in reality, they only serve to hinder the autistic community.

Autism Speaks board of directors is made up of all neurotypical individuals, save for one out of the thirty. Only .16% of the total revenue they receive is allocated to neurodiverse families, while the neurotypical CEO collects a six-figure check. Autism Speaks has spread harmful anti-vaccine rhetoric, has and continues to push for electric shock therapies for autistic children, while continually pushing the narrative that autistic children are broken things in need of fixing. Autism Speaks is a huge proponent for ABA therapy, which should not be surprising given their track record. (AutisticAdvocacy.org)

In order for autistic individuals to truly thrive and find good outcomes after diagnosis, there needs to be a major shift away from these inherent negative stereotypes and dehumanizing beliefs that have been sustained by the medical community. There needs to be a major change at a systemic level, on educating what autism actually is, in how autism is viewed and treated, because there are still medical professionals who call autistic kids “weird” and make comments about licking desks, and that, in my not-quite-a-professional-yet/no-degree-yet opinion, is a disease in itself, one of which I could write an entire paper on just that subject. A disease is classified as a particular quality, habit, or disposition regarded as adversely affecting a person or group of people, and in this case, that group of people is the autistic community. (jacademic.com)

If we do not see a change at a systemic level, changes in the community, changes in how the public perceives autism, autistic individuals will continue to be traumatized by ineffective therapies, will continue to face isolation, will continue to face untreated medical conditions, will continue to face poor treatment from law enforcement (too many autistic individuals, especially autistic POC, have been brutalized/ murdered by police).

In this paper we were supposed to choose between a disorder or a disease. I couldn’t write about my chosen disorder without also addressing the disease that accompanies it.

I hope, for the sake of my child, and all autistic individuals, this disease will be eradicated from the medical field and the general public sooner rather than later.