Autism Spectrum Disorder
What is it? What is the lingo? How to support?
“Autism is adevelopmental disability that affects how we experience the world around us. Autistic people are an important part of the world. Autism is a normal part of life, and makes us who we are.”
<https://autisticadvocacy.org/about-asan/about-autism/>
*Image Description: Child smiling while wearing ear defenders*
What is Autism Spectrum Disorder (ASD)
Autism is a sensory processing disorder that makes it difficult to understand and communicate with the world around us. 1 in 68 people are diagnosed with ASD but for every 5 of these diagnoses, only 1 girl is found to have Autism. However, Autism isn’t just less prominent in females, in fact it occurs in about the same number of boys as in girls, but it is better hidden. This means that women are underrepresented in the autistic community. Much of this revolves around the fact that Autism research has been mostly done on men and therefore has been defined as being a typically “male” disorder.
Autism is a spectrum, not just a gradient. This means that every autism person has noticeable struggles in one, if not more, of the following categories: Social communication, Self-stimulation (more commonly known as “stimming”), Executive function, Sensory Issues, and Repetitive behaviors (TEDx Talks: Invisible Diversity). This spectrum can take the form of a color wheel with spikes in some areas and valleys in others. It is not a gradient simply ranging from high to low functioning and should not be treated as such.
Road to diagnosis
Autism can be diagnosed at anytime in a person’s life. In males it is typically diagnosed around ages 2–5 but can be diagnosed much later if it goes unnoticed. In females it isn’t usually diagnosed until at least the teen years if not further into their 20’s or 30’s. While an official diagnosis does require neuropsychological testing, the autistic community knows that an official diagnosis takes a lot of time, money, and effort. Many people have hurdles they must jump over before receiving a diagnosis. those that are still legally under their parent’s care must have their parent’s permission before being tested. If this child recognizes their autistic traits, they may still be autistic even if their parent’s don’t let them get tested. Testing is also expensive and, without really good insurance, costs a LOT out of pocket. Sometimes even with parental permission or when living on their own, autistic people simply cannot afford a diagnosis.
With these two things out of the way, diagnosis still takes a long time. A great amount of paperwork must be filled out. A doctor that specializes in neuropysch testing must be found (which is way harder than you ‘d think). This doctor needs to be accepting patients. And even then testing can sometimes be months if not years out. Before finding a doctor that was immediately accepting new patients, I had been put on an 8-month waiting list to be tested somewhere else. I was lucky enough to find better testing available in my area withing a month and didn’t have to wait 8 months for an official diagnosis. Many others are not as fortunate as me.
With all those things out of the way, the doctor must be unprejudiced and willing to test a patient. This is a barrier many women can’t seem to get past. Many doctors will say that because the patient is female, they can’t possibly have autism and therefore won’t test them for it. Due to these roadblocks, the autistic community recognizes self-diagnosed and professionally-diagnosed autistics as equals.
Terminology: How do I refer to autistics?
The arguments about terminology have been around for a while. Many outsiders to the community and many parents of autistic children will ask you to use person-first language, thereby referring to them as “people with autism.”However, many in the autistic community do not like the use of this terminology. As you will hear from most autistics, they prefer identity-first language. This would mean you should refer to them as “autistic people.” Autism is as much a part of our identity as our skin color or whether or not we have freckles or what our voices sound like. Our autism cannot be separated from us.
How is this different than any other neurological condition? Well, if you consider someone who struggles with anxiety or depression, do you refer to them as “my anxious friend” or “my depressed co-worker?” I highly doubt it. In cases like these, it is correct to refer to these people using person-first language because they are a person before they are their condition. These conditions can be separated or treated using therapy or medications to the point that they are completely removed from an individual’s life (in some cases). However, no matter what anyone tells you (even parents of autistics), autism cannot be cured using vitamins, medications, therapy, or any other form of treatment. All any of those things will do is teach an autistic person that they are not acceptable and that they have to hide who they are. Having lived as an autistic person and hidden it to the point that even I didn’t know I was autistic, I am telling you, the damage that having your identity taken away like that can do is unbearable. If one goes for too long not knowing about this crucial part of themselves, it often leads to depression, self-harm, suicide, and more mental health problems.
Some common terminology you will hear if you are new to the autistic community is listed below along with their definitions:
Person-first language: This language is meant to identify that a person is not defined by their condition. It is typically painted in a positive light and often has positive uses but isn’t preferred by members of the autistic community
Identity-first language: This language identifies a diagnosis or characteristic before identifying the person. This is common when stating race or heritage such as “the Native American woman” or “the black man.” This type of language would be inappropriate in describing most diagnoses, but autism is the exception. “The anxious person” would be rude to say to someone with anxiety, but “the autistic person” is perfectally acceptable and preferred when addressing autistic people.
Neurodiverse: This refers to someone whose brain is wired differently than the common population. This can refer to anyone with Autism, ADHD, Tourettes, etc.
Neurotypical: This refers to someone whose brain is wired the same as the common population. They don’t typically struggle with any mental or intellectual disorders.
Autism moms/dads/parents: This is a derogatory term used to reference parents that view their autistic children as sick or broken. These parents typically push ABA Therapy extremely hard. They will try to find cures for their child’s autism. Some will suggest vitamins cure autism or that autism is caused by vaccines. These parents are found complaining about their child or comparing their child’s autism to them being stillborn or dead. These parents are those that say their perfect children were snatched away by autism. Now it is important to realize that not all parents or autistic children are like this. Many autistic people have wonderful amazing parents. These parents are excluded from this term. Autism parents simply refers to the parents of autistics that use their child’s autism to get attention.
ABA Therapy: This therapy can be both good and bad. ABA stands for Applied Behavioral Analysis. This type of thereapy is heavily taught in teaching programs and medial programs. ABA Therapy can be useful in that it can help non-verbal autistics learn to speak. It an teach autistics important life skills. It can help with educational concepts and give important one on one service. However, this therapy can also be very detrimental to those that go through it. During ABA Therapy, one of the main goals is to help autistic people to fit in with society. This means that autistic traigts are frowned upon. Things have gotten better in that autistic behaviors are no longer simply punished, however they are ignored. Autistic behaviors aren’t just ways to cause trouble or lash out. They are a reaction to a psychological need. If that need is not met, the child suffers. By counselors ignoring their patients’ needs, they are teaching these autistics that it is better to be quiet and conform than to take care of themselves. For this reason, many autistics are more likely to end up in abusive relationships or suffer other mental health disorders that they would not have otherwise.
Autism Speaks: This is a hate group that puts on a good front. They give out information about autism and can seem kind enough, however at a closer look one realizes that they are not trying to help autistics at all. This is not a group run by autistics. It is run by neurotypicals for neurotypicals. They treat autism as a disease that must be cured and have values that support eugenics. They collect tons of money from people thinking that they are helping autistics. However, only 4% of that money even goes to autistic families. The rest of the money goes into research for a cure or into the employee’s pockets. They are the source of a lot of incorrect stereotypes about autism, including the stereotype that autism is only found in boys. This is shown by their mostly blue puzzle piece logo. This group is the reason also that many autistics don’t like the use of the puzzle piece symbol to represent autism. Please do not support them.
ASAN: This is a group run for autistics by autistics. ASAN stands for the Autism Self-Advocacy Network. This group aims to teach neurotypicals about autism and how to support those that have it. This group writes books and creates works to help autistics deal with daily life in a neurotypical world. They are a nonprofit disability rights network that advocates for change and ensures that autistic voices can and will be heard. Their motto is “Nothing about us, without us!” Please support this group and spread word that this is a group that actually supports autistic people, NOT Autism Speaks. AWN: This is another great group to lend support to. AWN stands for Autistic Women and Nonbinary Network. This group is also run by and for autistics. This group focuses on those in the autistic community that are underrepresented. Women and nonbinary people are underrepresented due to stereotypes held by neurotypicals. This group offers a platform where autistics can share their experiences. Please support this group as well.
Masking: This is more commonly found in girls than in boys and more often in low need rather than high need autistics. Masking is the way in which autistics hide their autism. They will observe those around them and mimic those actions to appear neurotypical. For example, one way I have done this is by laughing at jokes even when I don’t understand why they are funny. I was commonly found doing this in middle school when jokes were made by friends that had more mature meanings than I could understand. Another way I have done this is at parties or dances I will copy the dance moves of a friend around me or continuously walk around the room as though I’m looking for someone so that no one notices I am sensory overloaded. When someone’s mask is up, you are likely to think they are neurotypical. This is why so many people will tell autistics, “You don’t look autistic” or “But you’re so normal” when they reveal their diagnosis.
Stimming: This refers to self-stimulation. Many higher need autistics can be seen doing this loudly and proudly. In lower need autistics it isn’t as common to see in public because they know it is frowned upon and will go to a greater effort to hide it. Self-stimulation can take the form of flapping, rocking, nail biting leg bouncing, snapping, spinning, repeating words, yelling, and more. Self-stimulation is an autistic persons natural way of speech. Many autistic people struggle with speech and communication in the ways neurotypicals find normal and natural. Autistics will stim for usually one of three reasons. First, many autistic people use stimming to communicate emotions. For example, it is common in autistic people to bang one’s head or snap or yell when they are angry. In times of joy or excitement, many autistics will hand flap or jump up and down or make happy squeals. Second, autistic people will use stimming as a way to manage their senses. If an autistic is overstimulated, they will use stimming to block out excess stimulation. The opposite will happen if an autistic is understimulated. In this case, an autistic will use stimming to bring up their stimulation level. The third and last reason an autistic will stim is if they are sensory-seeking. For me, this is when I have a desire to feel a specific feeling or hear a certain sound. I will specifically seek out that object and use it to stim.
High Functioning/Low Functioning: These are outdated terms often used to identify and autistic person as verbal or nonverbal. Many people will use the “You must be high functioning” as a compliment to say you do a great job looking “normal.” However, this is really taken as a backhanded compliment saying “Your Autism doesn’t effect me that much and I like that.” It is another way of saying that an autistic person should continue to not be themselves in order to fit in.
High Need/Low Need: These are the up to date terms and are often referred to in levels from 1 to 3 or 1 to 5. A level 1 need would be an autistic person that does not need a lot of assistance to get by in life. They can hold a job. They can take regular classes with their neurotypical peers. They can speak well. They do fine in school. They can live on their own. A level 3 or 5 (depending on the scale) means that an autistic person is likely nonverbal. They need a lot of assistance to get by. They probably need to take special education classes or work with an occupational therapist. They will probably need a caretaker for most of their life. They most likely can’t hold down a job or live on their own. The reason the terminology was switched to this was to better address the needs of autistic people rather than not giving help to the “high-functioning” autistics because they don’t need it (even though many of them do) and not giving help to the “low-functioning” autistics because they are a lost cause. This terminology is more accepting and helpful.
For more information check out:
YOUTUBE CHANNELS:
Fathering Autism
Invisible I
The National Autistic Society
Kati Morton
WEBSITES:
OTHER REFERENCES (Videos, Scientific Journals, etc.):
Dean, M., Harwood, R., & Kasari, C. (2017). The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder. Autism, 21(6), 678–689. https://doi.org/10.1177/1362361316671845
Gough, Katy. [invisible i]. (2017, February 21). Autism in females | invisible i [Video]. YouTube. https://www.youtube.com/watch?v=5wKb5TUX49U&list=PLxuVEzGlkfiOofniidNP_AN1ETlFAp7AC&index=3
Iris. (2018, November 12). What women with Autism want you to know | Iris [Video]. YouTube. https://www.youtube.com/watch?v=NwEH9Ui4HV8&list=PLxuVEzGlkfiOofniidNP_AN1ETlFAp7AC&index=5
Krahn, T. M., & Fenton, A. (2012, January 05). The extreme male brain theory of Autism and the potential adverse effects for boys and girls with Autism. Journal of Bioethical Inquiry, 9, 93–103. doi: https://doi.org/10.1007/s11673-011-9350-y
Morton, Kati. [Kati Morton]. (2018, May 28). Autism in females: How is it different? | Kati Morton [Video]. YouTube. https://www.youtube.com/watch?v=gpJ6bJHEc k&list=PLxuVEzGlkfiOofniidNP_AN1ETlFAp7AC&index=5&t=0s
Solomon, M., Miller, M., Taylor, S.L. et al. Autism symptoms and internalizing psychopathology in girls and boys with Autism Spectrum Disorders. J Autism Dev Discord 42, 48–59 (2012). https://doi.org/10.1007/s10803-011-1215-z
TEDx Talks. (2017, July 6). Invisible diversity: A story of undiagnosed autism | Carrie Beckwith-Fellows | TEDxVilnius [Video]. YouTube. https://www.youtube.com/watch?v=cF2dhWWUyQ4&list=PLxuVEzGlkfiOofniidNP_AN1ETlFAp7AC&index=9
TEDx Talks. (2018, December 14). “Copy & paste’ — Hidden Asperger’s — Girls with Aspergers| Niamh McCann | TEDxDunLaoghaire [Video]. YouTube. https://www.youtube.com/watch?v=QY2ctCuTWPw&list=PLxuVEzGlkfiOofniidNP_AN1ETlFAp7AC&index=7
The National Autistic Society. (2014, June 18). Autism in pink documentary (English) [Video].YouTube. https://www.youtube.com/watch?v=E-FvExDAqh8&list=PLxuVEzGlkfiOofniidNP_AN1ETlFAp7AC&index=6
