I have noticed as I go from one Autism support group to another that there is often a lack of understanding in the terminology surrounding Autism and neurodiversity. This is very important for one reason: Fights are constantly starting over miscommunications.
More than that, people are starting to use dog whistle manipulations to start those fights. Meaning that the environment is so charged with tension that a word will SET the page on FIRE. It’s unhealthy and it’s unhelpful. And while, yes, I am on a mission to stop it, I also just want people to be informed. So, you can safely navigate the politics of Mental Health and Autism, both online and in the world, especially when it comes to parents who are trying to provide services for their children.
With that in mind, once it is done, I will be adding this series of Neurodivergent Terms and their explanations to the Neurodivergent Survival Guide under the Me(ntal Health) category on the main menu. And while I will be putting some of my opinion into these definitions I will also be trying to be as unbiased as possible, so that you can make your own decisions.
NOTE: While the majority of these terms are not controversial, the highlighted definitions can be highly controversial and triggering. Use with an abundance of caution and kindness.
Let’s get started, after the jump.
Holly’s list of neurodivergent terms
In alphabetical order:
Ableism: Ableism is the discrimination or prejudice against disabled people. This can include physical disabilities, as well as neurotypes like Autism. An example of Ableism is the idea that ADHD is just for children that need to be disciplined better. As one person put to me, “my father always just called that needs an ass whooping disorder” That would be ableist and dismissive of all the children and adults who deal with ADHD everyday.
#ActuallyAutistic: This is a hashtag created by the neurodivergent movement meant to highlight the importance of autistic voices in recommendations and content about autistic people. It has become both a battle cry and somewhat controversial thing to say, depending on who you are talking to. I use it when I want to identify or reach out to the ND movement. When I want to reach people that might be intimidated by some of the anger that comes with an ND activist, I use #autisticadult. For me it’s about diplomacy and education, rather than identity. I am autistic, I don’t need a hashtag to legitimize that. And I don’t want to alienate someone who could use my help. That being said, I still think it is ultimately a positive expression of protest.
Accommodation: Accommodations are things that help mitigate more difficult aspects of ASD and other mental health differences. Like for example, tinted glasses, headphones, closed captioning, are all examples of accommodation. Also, in school there can be accommodations involving longer test times, or privacy to reduce distractions. Or access to an AAC device or stim toy to help with anxiety. There are extremely important to understand because they are about you and your child’s rights. It’s not what someone is willing to give to you to be politically correct or “nice”, it’s about equality and leveling the playing field.
Antipsychotic Medicines: This is not really a definition but rather a bit of advice on the use of Antipsychotics for disorders like depression and bipolar disorder. I know that for some, they can be extremely helpful, but I get concerned when they are used for children. The reason for this is side effects. I was put on several medications like this for my bipolar that had horrible ramifications both physically and mentally, including some permanent nerve damage. (Other problems included increased photophobia, excessive drooling, uncontrollable movements, etc.) So, in my opinion, don’t dismiss it out of hand, because they did help temporarily BUT use with caution. Read those warnings. Just because something is rare, doesn’t mean it can’t happen.
Applied Behavior Analysis (ABA) Therapy: ABA therapy is EXTREMELY controversial. It is a compliance based therapy that is most commonly used in the autism community today. That being said, its original structure, paired with Aversion Therapy, was so destructive that many of the original participants suffered severe trauma, some of them killed themselves.
When Aversion Therapy was removed from ABA and Positive Behavior Interventions took its place, it became more humane. BUT many advocates feel that it is still abuse because of the outlook that these children are being “fixed” and that ABA is a “cure” for Autism.
Personally, I like to look at ABA from its most distilled idea which is “ABC” or Antecedent, Behavior, and Consequence. Or what happened before the troubling behavior, like say, a meltdown, the behavior itself- the meltdown- and what were the consequences of that behavior. Consequence, by the way, is not usually “punishment” but rather a result. I think this idea is extremely important when examining the shortcomings of being Autistic in a Neurotypical’s world. (Which, let’s be realistic, is the case for almost all neurodiverse peoples. We are the minority.)
And for that reason alone, I am not willing to blanket condemn ABA therapy. That being said, I do think that traditional ABA therapy is more than abuse, it’s assault, and modern ABA therapy should be used with caution and vigilance for ableist behavior from clinicians and technicians. I also prefer that if you are using an ABA therapy clinic, one or more of the people in charge should be neuroaffirming or neurodiverse themselves. That might be a tough one to find these days, but I have personally found it to be essential for my comfort level to work with my son. You either accept him, then help him, or you don’t get my patronage. It’s that simple. (I have found such a clinic, so it is possible.)
For more information on ABA look at my posts on the therapy which include other links from survivors, both opponents and proponents of ABA. I also did a follow up explaining the controversy in more detail.
Apraxia: Apraxia is very close to my heart as my son has Apraxia of speech and body. It is said in many different ways, and I find that even medical professionals don’t always know which is what, but I’ve also heard it called, Childhood Apraxia of Speech and Verbal Dyspraxia. I think the main distinction is that Apraxia can be caused by damage to the brain, or you can be born with it, like my son. (I am not a doctor, that is just my understanding.) Whatever the origin, my son has trouble with motor muscle planning. This means that when he goes to speak, it never comes out the way he meant, resulting in a lot of babbling speak or mispronunciations as he gets older. It also creates problems in other motor functions like eating or riding a bicycle. It is honestly the hardest part of this life for me. Seeing his frustration when he wants to speak or sign and the motor planning is just misfiring, it breaks my heart. It also means that we had to practice things like stairs for a very long time before he got the muscle memory to do them without fear. On the positive side, one famous dyspraxic I can tell you about is Daniel Radcliffe of Harry Potter. His personal demon was tying his shoelaces. So if your kid has apraxia or dyspraxia, they might just be a wizard?
Asperger’s Syndrome: Asperger’s Syndrome technically no longer exists as a diagnosis. It was included in the autism spectrum sometime within the last few years. Why is that important? So many reasons. Aspies (as they prefer to be called) are usually considered to be “high functioning” autistics. If the diagnosis still existed, I would be considered an Aspie because of my ability to converse with people and maintain the outward appearance of “normalcy”, while still having some of the same strengths and difficulties that comes from being just regular old autistic. My problem? Not only do I feel the separate diagnosis devalues non-verbal autistics, I don’t like Nazis. Dr. Hans Asperger was closely involved with eugenics when he came up with the idea of a different “class” of disabled that should be exempt from euthanasia do to their hidden talents. So, yeah. I don’t dig that. BUT, a lot of people identify with the “aspie” designation and culture. And I will never shut a person down who wants to identify as a person with Aspergers or an “Aspie.” That is their choice and I respect it.
Attention Deficit Hyperactive Disorder (ADHD): Oh man, this is a big one. I am a person with ADHD, you probably know that if you’ve read any of my blog before. But did you know that there are technically three different types of ADHD? Let me include a link from a professional here- “Three types of ADHD”. If you google this, there are schools of thought that say there are as many as seven different types of ADHD, but I prescribe to the three idea for now. I am mostly Inattentive ADHD, which means that I don’t have that stereotypical hyper appearance. My hyperdrive is in my mind.
One thing I would like to really get across to you is just because you can concentrate on something for a very long time, doesn’t mean that you don’t have ADHD. In fact, that’s actually a symptom. It’s called Hyperfocus, and it means you can stay focused on something that you like and drives up your dopamine levels for HOURS. This symptom is usually what stops parents from getting help for their children.
My ADHD is one of the hardest things that I deal with for myself. It has huge side effects in my attention, my emotional regulation, and my executive function. Getting medication for my ADHD literally saved my life. If I hadn’t, I think I would have been consumed by the depression and repercussions of untreated ADHD. If that isn’t blunt enough, it could be life or death for your child. Do not dismiss ADHD just because it became an unpopular or controversial diagnosis for our generation. Untreated ADHD was the closest thing I ever came to true madness. I would not wish it upon my worst enemy.
Albert Einstein: Okay, Albert Einstein is not a term, he is a man. But there is a whole syndrome named after him that refers to children who exhibit all the signs of autism but are really just gifted “late talkers”. To me, this is… what is the clinical term? Uh… horse-shit. In my humble, not a psychologist, opinion, this is just another way to say “But I’m not REALLY autistic, look how NORMAL I am.” Yeah, right. See you in ten years when your autistic burnout puts you in the pysch ward. Ok. That was a little aggressive.
From my own study, I would say that Albert Einstein was definitely autistic into his adult years and for his whole life. Just because he could be misconstrued as “arrogant” “quirky” or “selfish” doesn’t mean that there wasn’t an underlying personality type that could account for such “character flaws.”
Autism Self Advocacy Network (ASAN): ASAN is a charity run by autistics to give voice to the unique identity that comes from autistic people. It is also meant to help support autistic people of all different abilities to be self sufficient and speak for themselves. I personally think they should be the most consulted advocacy group but they are often the most dismissed or controversial. Mostly because some of their ideas can be abrasive to parents of autistic children, who for the most part, are still running the show on advocacy. As a person who lives in both worlds, I have found some of the ideas propagated by ASAN to be a little rigid, but marginalized groups sometimes have to be rigid in their demands. So I can understand that. When it comes to advocacy, things can also get political, so handle any mention of ASAN with caution, negative or positive. So far, they get an A- for me. Still the best game in the show, just a little divisive from time to time in their approach. STILL, a wonderful organization that you should give to, in my very biased opinion.
Autism Speaks: If I give ASAN an A-, I give Autism Speaks a F+. I think they fail both autistics and parents. First by indulging in this offensive cure culture and then the martyrdom ideology of Autism Moms™, not to mention the infantilization and dismissal of adult autistic voices. They have publicly said the most ableist things, including when the CEO described wanting to commit suicide with her daughter in the car so they no longer had to live like they were living- with her daughter beside her during the speech. Can you imagine what that would feel like? And second, their support of actual autistic families is dubious at best. The only thing I think that is positive about them is that they turned Autism into a household word. They also created an image of hopelessness that will take years to undo, but that is a biased opinion too.
Autism Spectrum Condition (ASC) vs Autism Spectrum Disorder: I have not actually heard ASC used as much as ASD, so much so that when I first saw it in its acronym form, I thought it was a typo. The idea is that “condition” is a more neuroaffirming way of speaking about autism, as opposed to the pathological nature of a “disorder.” For a technical definition of Autism Spectrum Disorder, I will refer you to the professionals once more, “What is Autism Spectrum Disorder?”. Just a warning, some of the language in that link is rather clinical and a bit offensive if you prescribe to the neurotype over disease philosophy.
Autism Support Levels: In the interest of still classifying autistics, the DSM separates autistics into three levels of support. Here is another link to help you understand this idea, “What are the Three Levels of Autism?”
I personally think this is still limiting considering the depth of diversity in autism. I like a phrase I first heard on instagram that called an autistic person either someone with “High Support Needs” or “Low Support Needs”, this could also be defined as “Heavy Accommodation Needs” to “Light Accommodation Needs” because that is really what the average person or authority is trying to classify.
There is still a huge emphasis on verbal vs. nonverbal in the Autism Support Levels; and this bothers me specifically because I consider both my son and I to be High Support Needs. My needs are mostly due to emotional regulation and sensory issues. His are due to his age and communication issues because of his Apraxia. Only one of us can “pass” as “high functioning” and that is only because I have falsely learned to mask my autistic features.
Autist: This is the singular form of an autistic person. Like instead of saying “Scottish person”, you might say “Scott”. The only thing I have to say about that is a lay person might think you are saying “artist.” There is actually a kind of fun misunderstanding in the Temple Grandin movie where a well meaning woman says, “Oh my son’s artistic too, he’s scared to death of planes.” Completely unrelated of course, and not super helpful, but I think endearing. Because neurotypical laypeople are still people, and should be forgiven for their mistakes and educated with kindness if we want to change the conversation around autism.
Autistic Burnout: This is extremely important. Autistic burnout is from the trauma of trying to hide or “mask” autistic traits. A lot of autistic people go through burnout several times in their lives. For those that are undiagnosed, it can culminate in the developing of a trauma disorder, like PTSD or BPD. It is extremely destructive and the most common problem for autistic people, but it is the least discussed. It is my mission to change that.
Autistic traits vs Autism symptoms: This refers to how people speak about Autism. Some people in the community see autism as just another type of thinking and development, while others see it as a disease to be cured. So when you talk about autism to other people, it’s important to decide how you would like to portray autists, as people with different abilities and weaknesses, or as patients with a sickness to be treated and cured.
Admittedly, I am of the neurodiversity crowd. I think that it is much too common to be an illness, and too comprehensive/integral to be a defect. To me, it’s about sensitivity. We need people with this level of sensitivity in the human race. While it can be burden for us to live with the sensitivity, including a susceptibility to really devastating comorbid conditions, I would say the majority of us like the way we see the world, and can benefit those without our unique perspective.
Aversion Therapy: Hold on, I need to take a fortifying breath for this one. Personally, I think Aversion Therapy is assault and should be prosecuted. BUT I promised to be unbiased so let me explain what it is in a more clinical sense. Aversion Therapy is the idea that when a person thinks or does something that they want to correct, they receive a painful stimulus at the exact moment they do or think said thing. The precursor to this was Pavlov and his conditioning experiment with dogs. (And don’t be fooled by the legend, it wasn’t just a dinner bell. He electrocuted and mutilated dozens of dogs in his conditioning experiment. He’s not some psychology folk hero, he was a sadist. Again, that was biased, as a dog lover.)
Aversion therapy has been used in everything from substance abuse, to gay conversion therapy, and if we remember from above, ABA therapy. Essentially, providing painful stimuli to already sensitive people to make them stop being autistic. Like I said, assault. And if anyone thought of doing that to my son, myself, or really any autistic person, I would want to not only ruin them, I would want to give them the old Pavlov, if you know what I mean.
Avoidant Personality Disorder (AVPD): Anyone who has read my blog’s archives will know that AVPD is very important to me because it is something I suspect about myself. Although I still qualify it as one of my many misdiagnoses before ASD, I still can’t get over the similarities to myself. Here is a link that discusses the symptoms of AVPD.
More than that I’ve read a very interesting hypothesis that AVPD is actually a trauma related disorder that can be the result of untreated ADHD and the Rejections Sensitive Dysphoria that often occurs with ADHD. This makes a lot of sense to my life.
One awesome person that has AVPD is my personal hero, Jenny Lawson, author of The Bloggess, Let’s Pretend this Never Happened, and Furiously Happy. Oh, and the beautiful “coloring book”, that is really a high art gallery book, with amazing advice, and beautiful prose, entitled You Are Here. (I have one copy but if I am ever going to color in it, I think I am gonna have to get another for just keeping as is.)
Alright! That covers the A’s. I will be moving on to B-D in Neurodiversity Glossary Part 2.