In this blog post, I will respond to each point in the Autistic Self Advocacy Network's (ASAN's) "About Autism" resource (https://autisticadvocacy.org/about-asan/about-autism/). I will be responding to describe how autism affects me, personally. Every autistic person is different. Thinking of autism as a sliding scale from high-functioning to low-functioning is not accurate. Each autistic person experiences the differences in processing that come with autism at varying intensities for each category of difference (sensory, communication, structure and routine, etc.). Life and daily circumstances can also change the intensity with which these differences are felt.
First, ASAN gives some facts about autism:
"Autism is a neurological variation that occurs in about one percent of the population and is classified as a developmental disability. Although it may be more common than previously thought, it is not a new condition and exists in all parts of the world, in both children and adults of all ages. The terms “Autistic” and “autism spectrum” often are used to refer inclusively to people who have an official diagnosis on the autism spectrum or who self-identify with the Autistic community. While all Autistics are as unique as any other human beings, they share some characteristics typical of autism in common."
It is worth noting here that I was diagnosed as autistic as a young adult by a psychiatrist, and then my diagnosis was upheld by a specialist contracted with the Social Security Administration. I live in a group home and am on disability.
After giving some facts about autism, ASAN moves on to highlighting some processing differences common to autism:
"1. Different sensory experiences. For example, heightened sensitivity to light, difficulty interpreting internal physical sensations, hearing loud sounds as soft and soft sounds as loud, or synesthesia."
I have heightened sensitivity to light, sound, smell, and other sensory input. Early examples of this are my parents having to remove the tags from my clothes and only wanting to wear "play clothes" as a kid. My fear of fireworks, toasters popping, and opening biscuits are also examples. Multiple sources of sound, like a TV and a radio, a store with music and shopping sounds, etc. agitate and overwhelm me and sometimes even trigger a fight, flight, freeze, or fawn response. Crowds, the checkout area of stores, busy streets, and the like do the same thing. A specific example of this is when I went to buy my laptop. The store had an open layout with bright lights and lots of visual stimuli. There were also a lot of sounds in the store. I was visiting my family, so my autism coach was not with me to help. I had a detailed list of what I was looking for in a laptop, but by the time I reached the laptops in this overwhelming store, I had lost my ability to express myself clearly in speech and my ability to read from being so overwhelmed. I ended up just handing the list of specifications to an employee. I could not even properly examine the laptop I was going to buy because I was too overwhelmed. I just had to go with it.
"2. Non-standard ways of learning and approaching problem solving [sic.]. For example, learning “difficult” tasks (e.g. calculus) before “simple” tasks (e.g. addition), difficulty with “executive functions,” or being simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.
I experienced this with learning math. I struggled a lot with basic arithmetic and algebra, despite trying hard, but once I reached trigonometry and pre-calculus, the material was easy for me, as long as I had a calculator to do the "simple math". I also deal with executive dysfunction in my daily life. However, my verbal skills in writing are pretty good.
3. Deeply focused thinking and passionate interests in specific subjects. “Narrow but deep,” these “special interests” could be anything from mathematics to ballet, from doorknobs to physics, and from politics to bits of shiny paper.
My main special interest has been Harry Potter since early elementary school. I've also developed other intense, narrow interests that lasted 6 months to a few years and then faded away. Sometimes, these interests became my identity, which caused problems in my interpersonal relationships.
4. Atypical, sometimes repetitive, movement. This includes “stereotyped” and “self-stimulatory” behavior such as rocking or flapping, and also the difficulties with motor skills and motor planning associated with apraxia or dyspraxia.
I only did a little of this growing up. I remember, as a teenager, I liked to pull my hands inside my sleeves and then flap my arms, letting the fabric flap around. I also conducted imaginary music as a stim and chewed on my hair and clothing. I do more of this now because it is satisfying and helps me regulate how overwhelmed I am and my emotions.
5. Need for consistency, routine, and order. For example, holidays may be experienced more with anxiety than pleasure, as they mean time off from school and the disruption of the usual order of things. People on the autistic spectrum may take great pleasure in organizing and arranging items.
I know from my mom that I loved to rearrange the can cupboard as a kid. I still love organizing things. I also struggled a lot with change in routine growing up. I felt sick (probably from anxiety) every time we traveled and every time I went to a sleepover growing up. My daycare in the summer also used to take us on frequent field trips, and I remember this making me anxious. I wanted our predictable camp routine, and the unpredictableness of field trips to new places all the time stressed me out, even though it was also fun sometimes.
6. Difficulties in understanding and expressing language as used in typical communication, both verbal and non-verbal. This may manifest similarly to semantic-pragmatic language disorder. It’s often because a young child does not seem to be developing language that a parent first seeks to have a child evaluated. As adults, people with an autism spectrum diagnosis often continue to struggle to use language to explain their emotions and internal state, and to articulate concepts (which is not to say they do not experience and understand these).
I started speaking at a normal age, and communication is the autism difference in processing with which I struggle the least. However, I do struggle some with expressive communication. Writing is much easier for me than speaking. I have trouble verbally saying what I want to say and often "talk in circles", which is especially hard in situations like doctor's appointments, not to mention it annoys my family some. I've learned, where possible, to come with a script or a list of points to cover to help me with the interaction. I also have trouble labeling and discussing my emotions, although I've worked hard on this with my therapists over the years and can do it more than I used to be able to. I go nonverbal when overwhlemed or anxious and use AAC to communicate in those circumstances.
7. Difficulties in understanding and expressing typical social interaction. For example, preferring parallel interaction, having delayed responses to social stimulus, or behaving in an “inappropriate” manner to the norms of a given social context (for example, not saying “hi” immediately after another person says “hi”).
When I tried working, my performance reviews or reasons for termination always cited (that I was a hard worker but had) inappropriate social behavior for the workplace. I have trouble telling when people are busy and when it is a good time to talk, as well as which topics are appropriate for which settings. I also would sometimes work under tables or take my breaks in closets due to sensory overload. As far as my friendships, it takes concentration to keep up small talk. I can do it well, but it doesn't come naturally for me. I also still prefer parallel interaction. My friends call it "coexisting in the same space with [me]". I like direct interaction, too, but in short bursts.
First, ASAN gives some facts about autism:
"Autism is a neurological variation that occurs in about one percent of the population and is classified as a developmental disability. Although it may be more common than previously thought, it is not a new condition and exists in all parts of the world, in both children and adults of all ages. The terms “Autistic” and “autism spectrum” often are used to refer inclusively to people who have an official diagnosis on the autism spectrum or who self-identify with the Autistic community. While all Autistics are as unique as any other human beings, they share some characteristics typical of autism in common."
It is worth noting here that I was diagnosed as autistic as a young adult by a psychiatrist, and then my diagnosis was upheld by a specialist contracted with the Social Security Administration. I live in a group home and am on disability.
After giving some facts about autism, ASAN moves on to highlighting some processing differences common to autism:
"1. Different sensory experiences. For example, heightened sensitivity to light, difficulty interpreting internal physical sensations, hearing loud sounds as soft and soft sounds as loud, or synesthesia."
I have heightened sensitivity to light, sound, smell, and other sensory input. Early examples of this are my parents having to remove the tags from my clothes and only wanting to wear "play clothes" as a kid. My fear of fireworks, toasters popping, and opening biscuits are also examples. Multiple sources of sound, like a TV and a radio, a store with music and shopping sounds, etc. agitate and overwhelm me and sometimes even trigger a fight, flight, freeze, or fawn response. Crowds, the checkout area of stores, busy streets, and the like do the same thing. A specific example of this is when I went to buy my laptop. The store had an open layout with bright lights and lots of visual stimuli. There were also a lot of sounds in the store. I was visiting my family, so my autism coach was not with me to help. I had a detailed list of what I was looking for in a laptop, but by the time I reached the laptops in this overwhelming store, I had lost my ability to express myself clearly in speech and my ability to read from being so overwhelmed. I ended up just handing the list of specifications to an employee. I could not even properly examine the laptop I was going to buy because I was too overwhelmed. I just had to go with it.
"2. Non-standard ways of learning and approaching problem solving [sic.]. For example, learning “difficult” tasks (e.g. calculus) before “simple” tasks (e.g. addition), difficulty with “executive functions,” or being simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.
I experienced this with learning math. I struggled a lot with basic arithmetic and algebra, despite trying hard, but once I reached trigonometry and pre-calculus, the material was easy for me, as long as I had a calculator to do the "simple math". I also deal with executive dysfunction in my daily life. However, my verbal skills in writing are pretty good.
3. Deeply focused thinking and passionate interests in specific subjects. “Narrow but deep,” these “special interests” could be anything from mathematics to ballet, from doorknobs to physics, and from politics to bits of shiny paper.
My main special interest has been Harry Potter since early elementary school. I've also developed other intense, narrow interests that lasted 6 months to a few years and then faded away. Sometimes, these interests became my identity, which caused problems in my interpersonal relationships.
4. Atypical, sometimes repetitive, movement. This includes “stereotyped” and “self-stimulatory” behavior such as rocking or flapping, and also the difficulties with motor skills and motor planning associated with apraxia or dyspraxia.
I only did a little of this growing up. I remember, as a teenager, I liked to pull my hands inside my sleeves and then flap my arms, letting the fabric flap around. I also conducted imaginary music as a stim and chewed on my hair and clothing. I do more of this now because it is satisfying and helps me regulate how overwhelmed I am and my emotions.
5. Need for consistency, routine, and order. For example, holidays may be experienced more with anxiety than pleasure, as they mean time off from school and the disruption of the usual order of things. People on the autistic spectrum may take great pleasure in organizing and arranging items.
I know from my mom that I loved to rearrange the can cupboard as a kid. I still love organizing things. I also struggled a lot with change in routine growing up. I felt sick (probably from anxiety) every time we traveled and every time I went to a sleepover growing up. My daycare in the summer also used to take us on frequent field trips, and I remember this making me anxious. I wanted our predictable camp routine, and the unpredictableness of field trips to new places all the time stressed me out, even though it was also fun sometimes.
6. Difficulties in understanding and expressing language as used in typical communication, both verbal and non-verbal. This may manifest similarly to semantic-pragmatic language disorder. It’s often because a young child does not seem to be developing language that a parent first seeks to have a child evaluated. As adults, people with an autism spectrum diagnosis often continue to struggle to use language to explain their emotions and internal state, and to articulate concepts (which is not to say they do not experience and understand these).
I started speaking at a normal age, and communication is the autism difference in processing with which I struggle the least. However, I do struggle some with expressive communication. Writing is much easier for me than speaking. I have trouble verbally saying what I want to say and often "talk in circles", which is especially hard in situations like doctor's appointments, not to mention it annoys my family some. I've learned, where possible, to come with a script or a list of points to cover to help me with the interaction. I also have trouble labeling and discussing my emotions, although I've worked hard on this with my therapists over the years and can do it more than I used to be able to. I go nonverbal when overwhlemed or anxious and use AAC to communicate in those circumstances.
7. Difficulties in understanding and expressing typical social interaction. For example, preferring parallel interaction, having delayed responses to social stimulus, or behaving in an “inappropriate” manner to the norms of a given social context (for example, not saying “hi” immediately after another person says “hi”).
When I tried working, my performance reviews or reasons for termination always cited (that I was a hard worker but had) inappropriate social behavior for the workplace. I have trouble telling when people are busy and when it is a good time to talk, as well as which topics are appropriate for which settings. I also would sometimes work under tables or take my breaks in closets due to sensory overload. As far as my friendships, it takes concentration to keep up small talk. I can do it well, but it doesn't come naturally for me. I also still prefer parallel interaction. My friends call it "coexisting in the same space with [me]". I like direct interaction, too, but in short bursts.
The rest of the article says:
"Autism is diagnosed based on observation by a
diagnostician or team of diagnosticians (e.g. neuropsychologist,
psychologist, psychiatrist, licensed clinical social worker, etc.).
This material was adapted with permission from the “What Is Autism?” page on the Change.org website."
Comments
Post a Comment