This video was shot the morning of May 2, 2022 and Patreon members and YouTube channel members had access to this video on May 3, 2022. The video’s public release will be July 13, 2022.
Hey everyone, welcome back, Lyric here, and this week I wanted to talk about the diagnostic criteria for autism, and the way autism is defined.
In this current time in space, in history, autism is defined, primarily, through medical contexts, and we are defined by a book, the diagnostic and statistical manual, for diagnoses… and in other parts of the world is the ICD. This book, these books, these medical manuals, that they use to, literally, define, describe, and gatekeep the diagnosis for Autistic People, is very limiting, for a lot of reasons.
Eventually, I feel, that autism is going to have to be redefined, or re-described, and if you would like to know more, please do stay tuned.
There are three main reasons that I feel as if the autism diagnostic criteria, and the way we define Autistic People, and all NeuroDivergent People, is going to have to, eventually, be rewritten.
The first one being that, for autism, when you go to get a diagnosis, the criteria is based widely on childhood, and childhood presentation of Autistic traits. Therefore, me as an Autistic adult, who was diagnosed at 29, going in to be diagnosed, had to have excellent records of my childhood, and the person doing the assessment was talking to people who knew me as a child, and interviewing them about my childhood behavior, watching childhood baby footage, and listening to childhood stories of my Autistic presentation… because the criteria requires you to look at us as children, despite the fact that we are still Autistic when we grow up.
The other reason I say this diagnostic criteria is going to have to, eventually, be rewritten is: as it stands, it is currently a deficits only based model, that completely dehumanizes Autistic and NeuroDivergent People, because these diagnostic criterias only focus on our weaknesses, and do not talk about our strengths.
As human beings, we are multifaceted. We are a combination of both our strengths and our weaknesses, and with Autistic People, I’ll talk more about this later, sometimes even our strengths, in these manuals, are framed only as weaknesses. This is a big problem.
The third reason I say autism, and many other neurodevelopmental differences, that are outlined in these books, will have to be redefined, is that these definitions have been written and created by NeuroTypical, non-Autistic, people.
We have been examined from the outside. Perspectives written based on observation, versus firsthand experience, which means that, unfortunately, a lot of the things that are currently written in the book are just completely and totally wrong.
For example, the triad of impairments: “impaired communication, impaired reciprocal social interaction, restricted, repetitive, and stereotype patterns of behaviors and interests.”
All of these can be better explained by looking at language processing differences, differences in focus and attention, sensory and motor control differences, and emotional difference.
Language processing differences and differences and focus, impact so many things in our lives.
Is it easier to communicate with written or spoken communication? Do we process better through reading, and taking in information visually? Or do we process better by taking in information auditory? Do we process better externally typing, writing, creating art, or speaking things true to ourself, or with others? Do we process in the moment or on a delay and need more time to think?
Do we have working memory differences, the out of sight out of mind problem, that impacts our ability to communicate, and means we need reminders, notes, or takeaways from meetings or engagements to help us remember important details.
All of these things impact our social interactions and our ability to engage and communicate with other people. None of these differences are wrong. They are just varied points along the human communication spectrum.
Sensory and motor control issues are huge, and they can impact every area of our lives, especially communicating, and our engagements with other people.
Motor control can impact speech, and how we move, which impacts how we are able to engage, and how we are preceived by other people.
I’m clumsy. I’ve always been clumsy. I can type very fast, but I don’t type accurately. When I aim my hands and fingers somewhere, they may or may not land where I tell them to go. I buy zip and no tie shoes, because I struggle to tie my laces, and my handwriting is on par with a third grade boy. The third grade boy might actually have neater handwriting than I do. Writing by hand has always been physically painful for me.
Lucky for me, my partner has much better fine motor control, and often helps me with things that are a struggle for me.
There are the motor control things that people think of struggling to catch, tripping over one’s own two feet, being bad at PE and sports, and there are also parts of motor control that people sometimes take for granted, like the ability to make complex movements with our mouths: no simple feat.
Lips, teeth, tongues, and vocal chords, all working together with the diaphragm in perfect harmony, to produce words and syllables. Many people take the complexities of speech for granted.
Many Autistic People do not speak with our mouths, speak with our mouths minimally, or have situational loss of the ability to speak with our mouths.
Sensory processing differences can greatly impact our ability to engage with others and the world around us.
Sensory overload crashes, my brain. When I’m in pain, or overwhelmed by my environment, I’m unable to be present, focus, learn, or process information.
Audio processing differences, specifically, can often have a huge impact on my ability to process incoming communication.
If I can’t process the words, people around me are saying to me, due to background noise or internal overwhelm from other factors, I can’t engage in conversations, or communicate with other people.
The sensory issues are a huge part of my Autistic experience, but don’t get enough attention, when we’re talking about autism through a NeuroTypical lens.
Another part of my Autistic experience, that doesn’t get enough attention, when looking at autism from a NeuroTypical point of view, in my opinion, is our emotional differences.
A lot of times when you see non-autistic people talking about Autistic People, you see them talking about our emotional reactions to things, and we are called “over emotional” and they talk about meltdowns and these extreme emotional reactions… but nobody talks about the fact that inside the emotions are big emotions.
I am feeling very intense emotions inside, and so my emotional reaction, that many people may not understand from the outside. It may seem like an overreaction, is, in fact, proportionate to how much intensity I am feeling on the inside, despite the fact that that intensity may not be apparent to people around me, until I have a large emotional outburst, because the emotions become too much, and I can no longer contain them anymore, because I am having a very intense emotional experience.
On the flip side of that, talking about emotional differences, sometimes, when I have a very intense emotion, it can literally be too much, so much that I shut down and retreat in on myself, and appear as if I am having no emotional reaction at all, to a situation that should be completely overwhelming to me and I am having zero reaction.
That may mean I’ve shut down now, and that reaction is going to come to me at a later time, sometimes hours, weeks, months, or even years later.
The delayed processing processing difference has a huge impact on my emotional state, and my emotional reactions, and my engagement with other people.
For communication differences, we can be speaking or non-speaking, or situationally non-speaking. We may have echolalia, or palilalia, or verbal stimming. We may use visual processing, over spoken processing, have trouble processing sounds and words in busy environments, or groups of people. We may be better in one-to-one environments.
It never occurred to me to read people’s body language, until I was diagnosed Autistic at 29, but why should I have to read people’s body language?
Why can’t people just be upfront with me, and tell me what they’re thinking, and how they are feeling?
Why do I have to do all of the stretching to communicate in ways that other people are communicating? Why can’t other people stretch, and meet me where I am?
I do struggle to maintain and understand relationships, especially with non-autistic and NeuroTypical people.
I spend most of my time alone, or with Autistic People who get me. I actually don’t have so many communication difficulties with other Autistic People. Life is so much easier that way.
The medical book says Autistic People have “difficulties adjusting behavior to suit various social contexts.”
Being fake is so hard for Autistic People. Why is that a problem?
For me personally, my “difficulties in making friends” has developed into a “lack of interest in my peers” because life is more simple on my own and when my circle is small. People are unpredictable, and chaotic, and often not worth the stress. Again, what is wrong with this?
“Abnormal social approach” and “failure of normal back-and-forth communication” this is frustrating for me, I will admit it.
Often I don’t know when it’s my turn to talk, so I will, unintentionally, talk over people, or I will sit in the background, not sharing anything, because I can’t figure out the appropriate time, depending on if I’m feeling comfortable or not.
If I’m feeling really comfortable, maybe too comfortable, I’m going to blah, blah, blah, and talk too much.
If I’m feeling unsure and uncomfortable, and nervous, and anxious, and insecure, I’m going to sit in the background, and try to be as invisible as possible, because I’m going to feel like nobody wants to hear what I have to say.
“Reduced sharing of interests”- I don’t share anything if I am feeling nervous, or unsafe, or like my sharing is unwelcome in the group. A lot of times I feel like I am unwelcome in a group, so I am not going to share my interests.
“Failure to initiate or respond in social interactions” because I’ve had so many social failures over the years, and also, as I have said, I am very content on my own, engaging in my interests.
My interests, my hobbies, my passions, are my loves, and they bring me joy. Most people won’t know a topic that I love, as much as I love it, so I know conversations about things that I am deeply, deeply, interested in are often too much for other people, so I don’t share. I know if I were to “info dump” air quotes, air quotes, people often do not react well.
Growing up, I would rather engage in my passions than make friends, which was a concern to my guardians, but honestly, looking back, I would’ve gotten to a lot less trouble if I would have just been able to stay home. Those other kids got me into a lot of trouble.
This is one that gets me “highly restricted, fixated interests that are abnormal in intensity or focus” air quotes, air quotes. This gets me because this is one of those things, I was saying earlier, where even our strengths are framed as weaknesses, or things that are traits that are not necessarily strengths or weaknesses, they are just simply attributes, are framed in a pathological way.
This is one of my biggest strengths, and also one of my bigness weak, bigness, biggest weaknesses at the same time, but they only write this as a deficit.
For example, being unable to let something go can be a curse, if you can’t let something go that can’t be solved, because I can’t let it go, and I’m obsessing over it and it sucks, but if there’s a problem that could potentially be solved, and I am obsessed with it, and I can’t let it go… that means I am more likely to solve the problem.
So big weakness, big skill, not good, not bad, simply is part of me. It really bugs me the way they described that in that medical book.
Another one “stereotyped or repetitive motor movements, use of objects or speech, simple motor stereotypes, lining up toys, flipping objects, echolalia, idiosyncratic phrases.”
Why does this matter? Why is this a problem? Why is the way my body moves have so much concern to neurotypicals? Why is your lack of movements not more of a concern? This one is just stigmatization of people with differences in motor control and communication.
Echolalia, and these different phrases, they’re not completely meaningless, as people would often like for you to think.
Another one “insistence on sameness inflexible adherence to routines, or ritualized patterns of verbal or non-verbal behavior, extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take the same route, or eat the same food every day” examples that are given.
Why is the opposite, insistence on chaos, not pathologized.
I like my routines. My routines give me peace.
In a mind that is struggling with executive functioning, struggling to make sure I don’t forget anything, struggling to make sure I hold myself to all of the expectations, why is it a problem that I find the most efficient way of doing something and do it the same way every time?
I understand that it can be problematic when I “freak out” because a last minute change has been dropped on me, but if you just let me know of the change, and give me time to process it, instead of being upset that I’m going to be really upset about the change, until I’ve mentally accepted the change. Like why can’t we just have more compassion with that?
I think it is pathological for you to expect me to be able to drop everything, and run out the door, and change my plans last minute. It is a difference in human processing… processing on a delay.
I process on a delay. I need more time for processing. Some of us need more time to process things, and transitions, and changes, and surprises, are things that can require more time to process.
Those sensory issues, which are such a big thing for so many Autistic People: the only mention of sensory issues in the diagnostic criteria for autism says “hyper or hypo reactivity to sensory input and/or unusual interest in sensory aspects of the environment, e.g. Apparent indifference to pain, temperature, adverse response to specific sounds or textures, excessive smelling, or touching of objects, or visual fascination with lights or movement.”
The sensory issues are massive for us.
Every single human being, Autistic or not, has their own unique sensory profile.
There’s going to be something that is an irritating sensory experience for every human being in the world. Is it a bright light? Is it a smell you can’t stand? Is it a sound that is physically painful when it goes into your ears?
We’ve all got a sensory threshold for what we can tolerate and what we can handle, but for Autistic People, this sensory threshold can be increased or decreased in all of the different various areas of sensory processing: sight, sound, taste, touch, how well you feel your body in space, and balance, your ability to have movement, and motor control. These things are often in extremes for Autistic and NeuroDivergent People.
This impacts all of the above, and everything else we’ve spoken about today, but this little blurb, this little paragraph, is the only mention this gets in our current diagnostic criteria.
All right All, thank you for hanging out with me today, for this longer format video.
Drop me a comment or hit that thumbs up button, hit that like button, and let me know if you appreciated this longer format video.
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I hope it was helpful. I hope it was not too much information, and I hope to see you all next week.
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I will see you all next Wednesday. Bye!
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