Winter Blog Series!
Week Two
By Kimberley Hackman and Kiersten Hackman
Neurodiversity is a vast and diverse subject with a wide variety to explore. In the next few weeks, this blog will explore Autism (1) Language and Symbols – proposed solutions for providing improved resources and support for autistic and neurodivergent individuals in schools; (2) the scientific realm of diagnoses and research—examining under/misdiagnoses, the issues with the current DSM-5 system, and the changing conceptualization of autism and neurodiversity; (3) Autism and Gender – an overview of manifestation and the role masking plays in the spectrum of autism;
Topic: ASD Diagnosis, the Pros and Cons. Rather than focusing on the DSM criteria, this blog discusses what diagnoses means to autistic people, and the intricacies around receiving or pursuing a diagnosis.
To Ponder: "The concept that autism and other disabilities like dyslexia, dyspraxia, ADHD, and so on, are normal variations in the human population and do not require a cure, but rather accommodation and acceptance.” - Eric Garcia, author of We're Not Broken
Tidbits:
Why are diagnoses celebrated?
Many neurotypicals express confusion when autistic people show signs of excitement or joy upon receiving a diagnosis (whether formal or self-diagnosed) due to prevalent ableism and misconceptions about autism furthered by harmful organizations and lack of education.
However, many autistic people have shared how, before their diagnosis, they were convinced they were broken because they couldn’t seem to fit into and cope with neurotypical life. Learning they are autistic helped provide an explanation and a community that made them feel not alone and validated for existing in a neurotypical world the way they did—in other words, they weren’t broken or wrong, their brains just worked differently, and the process and validation of a diagnosis helped show them that!
So, yes, while autistic people are autistic before and after a diagnosis, many have expressed that there is a clear difference in the way that they begin to see themselves, and so learning about their neurodivergence can be a crucial step in avoiding augmented mental health struggles.
Pros/Cons
There are many pros and cons to getting an official diagnosis for one’s autism, causing many autistic people to remain self-diagnosed (which the autistic community has shown avid support for since many are self-diagnosed and neurotypical institutions are not built to accurately reflect or provide for neurodivergence).
Pros
Federally protected against discrimination based on their disability under the Americans with Disabilities Act (applicable for autistics in the US)
Accommodations are provided and federally protected
Self-validation — while self-diagnoses can provide significant validation, receiving that diagnosis from a medical professional in an “official” manner can often help ease the anxiety and self-doubt that comes with self-diagnosis
Validation from family/friends — self-diagnoses are not commonly viewed as credible by neurotypical loved ones, despite the amount of research and accuracy that may go into them, and so a formal diagnosis is often the only way to have one’s autism recognized (and maybe accommodated) by family/friends
Access to therapies that may help with things like de-masking (however, these might not be available in your area and many of them aren’t actually therapies seeking to help autistic people, but rather “behavior therapies” that seek to “train the autism” out of a person)
Cons
Very expensive — there are huge disparities in terms of autistic people who are able to access a diagnosis; due to the high costs of receiving one, many may not be able to or may choose not to get an expensive diagnosis, especially since it might just confirm what they already know about themselves
May not be available in your area
May have to fight for accommodations even if they are federally protected
May still be discriminated against anyways
Some countries, including the UK, Australia, and New Zealand, don’t allow autistic people to immigrate, or it may be significantly harder to acquire visas
Significant barriers to having or adopting children
The diagnosis process can be traumatizing
Many professionals are still extremely poorly educated about autism and may subscribe to outdated and harmful conceptions of it
This can lead to traumatizing appointments and even misdiagnosis—many autistic people, especially minorities like women or people of color, are diagnosed with several other disabilities, like ADHD (which is often a sister disorder with autism), OCD, personality disorders, and more, due to racist and misogynistic perceptions of these groups as naturally “crazy” or “wrong”
Depending on the political climate at the time, the rights of disabled people in countries like America might shift (a prominent fear for many formally diagnosed autistics after Roe v. Wade was overturned and laws protecting several other minorities were threatened by governmental figures)
Parents
Below are some guidelines for parents if their child receives an autistic diagnosis. This advice was taken from Guilford College’s DEI conference session on Neurodiversity and Self-Advocacy/Disclosure on March 24, 2023.
Don’t hide the information
Share accurate information and presume competence
Use developmentally appropriate language and concepts to explain
Normalize disability in your household
Be affirming
When interacting with non-family neurodiverse people—allow space to be curious and ask questions BUT know your relationship with that person and don’t ask invasive questions because neurodivergent individuals don’t owe you that just by existing
Vocabulary to Know and Use
NEURODIVERSITY describes the range of differences in individual brain function and behavioral traits, regarded as part of normal variation in the human population and used especially in the context of autistic spectrum disorders
Neurotypical — individuals who display “typical” thinking and behavioral patterns (“non-neurodiverse”)
Autism — the Autism Self-Advocacy Network gives a great starting definition of autism here
Allistic — a term used to refer to non-autistic people
Autism Spectrum Disorder (ASD) — the CDC defines ASD as “a developmental disability caused by differences in the brain [….] people with ASD often have problems with social communication and interaction, and restricted or repetitive behaviors or interests.” While commonly used in the medical field—for instance, in the DSM-5, which indicates the criteria for diagnosis—many autistic advocates criticize the negative connotations of this “definition” (which frames autism as a deficit, aligning with the medical model for disability) as well as its strict restriction of the wide spectrum of autism that erases many important aspects, resulting in poor resources and support systems for autistic individuals
Masking — a complex and costly survival strategy for autistic people involving the (often subconscious) observation and replication of neurotypical behaviors and suppression of natural autistic behaviors like stimming or intense interest, usually resulting in emotional harm including autistic burnout, emotional distress, depression, anxiety, autistic fatigue and burnout, loss of identity, and more
Nonverbal — many autistic people may be nonverbal or experience nonverbal episodes, in which they are unable to speak or communicate their coherent thoughts through speech; as always, there is a spectrum to this—some autistic people may become nonverbal over time (and there have been studies into the reasons and causes behind this), others may have nonverbal episodes which correlate to autistic shutdowns (often the result of overstimulation or overwhelming environments/situations), etc. I would recommend reading through this short post by the ASAN (see Organizations below) if you are interested in exploring more about this from an autistic person’s perspective.
The social model of disability — the notion that people are more disabled by physical and cultural barriers constructed by a neurotypical society in favor of a neurotypical way of life than they are by their disability
The medical model of disability — views disability as resulting from an individual person’s physical or mental limitations and focuses on finding a “cure” or making a person more “normal”
TWICE-EXCEPTIONAL — intellectually gifted people who have some other diagnosable condition (such as autism). Estimated rates of intellectual giftedness in autistic children are 0.7–2%, compared to up to 1% in the general public.[1] A greater prevalence of people with IQs over 140 (gifted/genius level) has been found among autistic people [2] A link has been found between autism, high intelligence,[2] and giftedness [4]