When a person has pneumonia, they have a discrete set of particular symptoms. Autism isn't like that. In the past, and perhaps even today after years of education about what autism is, people think of an autistic person as only the uncontrollable person wearing a helmet banging their head against the wall and screaming loudly. Not so.
"Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD." (source)
So now I guess I should say I'm autistic, rather than Asperger's. This will be a multi-part series about autism and the Christian, from a first-person point of view. This part is birth through high school. Part 2 will be about adulthood, relationships, and employment for the autistic person. Part 3 will be the Autistic Christian. The Lord made me this way and gave me spiritual gifts uniquely formed and perfectly suited for an autistic person to glorify Him.
I don't normally like to talk about myself. Rather, it's all about Jesus. But I've looked for resources about the autistic Christian and have found very little. What I did find was not helpful. Therefore, in the interest of perhaps encouraging someone else, I'll speak about my experience.
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I was born in December 1960 four weeks premature at a little over 3 pounds. I was in an incubator for a month. I had pneumonia and a host of other issues. It is a wonder I survived. The Lord knew.
18 months old. I always liked the feel of grass under my feet
Growing up in the 60s was an interesting experience. My very first memory was of the Beatles making an appearance on the Ed Sullivan Show. I had turned three years old just 8 weeks prior. I got all ready, laying on the floor on my tummy, with a pillow and my chin in my hands. When The Beatles came on, I remember being aggravated that I couldn't hear the music. Everyone was talking about The Beatles and I'd wanted to see see what all the hubbub was about, but the screaming from the audience kept me from hearing the actual music. I thought that was stupid. Ed Sullivan should quiet them down. I thought that people should just be quiet and assess things and get on with it. The silly girls screaming and covering their faces and crying were dumb. Plus, they scared me.
Right off the bat there are three issues that I still deal with today:
--in that situation, it wasn't logical to scream
--expressions of extreme emotion are difficult or even scary to be around (twisted faces, threatening hand gestures, tears)
-- excessive noise
I think it's funny that my very first memory is one of being irritated at the world, people's behavior, and how things were being run. It is an attitude that carries through to this day, 50 years later.
Age 3 in the house I lived in until age 8, with mother
By age 8 I was experiencing massive health issues. I had debilitating migraines and terrible stomach aches. Autistic people often are diagnosed with gastrointestinal issues, and the headaches were from being unable to screen out all the stimuli that was flowing through my brain."Many people with an autism spectrum disorder (ASD) have difficulty processing everyday sensory information such as sounds, sights and smells. This is usually called having sensory integration difficulties, or sensory sensitivity. It can have a profound effect on a person's life.
Our central nervous system (brain) processes all the sensory information we receive and helps us to organise, prioritise and understand the information. We then respond through thoughts, feelings, motor responses (behaviour) or a combination of these.
We have receptors all over our bodies that pick up sensory information, or 'stimuli'. Our hands and feet contain the most receptors. Most of the time, we process sensory information automatically, without needing to think about it much. People with sensory integration difficulties - including many people with an ASD - have difficulty processing everyday sensory information. People who struggle to deal with all this information are likely to become stressed or anxious, and possibly feel physical pain.." (source)
My parents took me to doctor after doctor, psychiatrists and psychologists and counselors, and if there had been witch doctors they would have taken me there too. I even had a spinal tap, and the pain from that gives me shudders to this day. I asked my mother what the result of all this was and she said one word:
"Psychosomatic".
The definition of psychosomatic is (of a physical illness or other condition) caused or aggravated by a mental factor such as internal conflict or stress
Age 8. See the smile? I'm ecstatic.
It's the beach!! And the soft robe! We summered on Cape Cod.
The water in front of the sand bar was always warm.
"It's all in your head."
I knew it was not all in my head. I knew it. I knew what I was experiencing was real, and to me, it was normal. Everything was very logical, usual, and in fact, I was perfectly content. After all that pain and endless doctor visits and intrusive questions, shots, questionnaires, and time spent, they still couldn't tell me why I had such terrible headaches and stomach-aches? Immediately I gained a disdain for doctors and I distrusted them from that point on. This is an attitude that carries to this day. I distrust any and all doctors.
Lunchtime in the cafeteria was a nightmare. It was loud and the unpredictable movements of 300 kids in one small space was scary. I hated the food, too. The foods I'd eat were extremely limited. I rarely ate and I remember the adult duty teacher always walking by and tapping my tray and saying "eat, eat." I'd come home and my mother would ask what I ate and I'd describe it. However I described it as it looked to me, not as it actually was. So I'd say something like, the meat was gray and hairy and there was something blue and gross and it all tasted bad. I said all this with great conviction. Enough days of that and my mother had a conference with the school lunch ladies and they assured her that all the food was normal.
At home I'd drive my mother nuts at dinner time. For example, if she served chop suey I'd patiently pick out all the hamburger before I'd eat a bite. Of course everyone was done eating long before and I'd still be sitting there picking out the hamburger. She would yell for me to just eat it. I thought the logical thing to do would be to serve me some without the hamburger. But there you go.
Food was always an issue. In High School all us kids would go to the creamery after the movie and get sundaes. I didn't like ice cream so I'd get an English muffin and hot tea. They called me weird but to me it was a perfect meal. Picture a gang of boisterous teens sitting at the ice cream counter laughing uproariously and me sitting in the middle of all that sipping tea and looking perplexed and/or grumpy and not saying anything at all the whole time. To this day I have a limited number of foods I'll eat and I am very, VERY happy eating the same thing over and over every day.
Not my school but a cafeteria in 1967. Source, OK to reuse
After the doctor debacle, my parents kind of got tired of trying to figure out what was "wrong" with me and they pretty much gave up and left me to my own devices. Which to an autistic kid, is heaven. Those were the days when kids were able to roam far and wide in the neighborhoods, fields, and streets at will and without adult supervision until streetlights came on and moms on porches hollered for the kids to come home. I'd spend great amounts of time in the cemeteries in back of and in front of my house (it was quiet there), in the brook dabbling my feet in the water and looking at tadpoles, (rhythmic water sounds are relaxing) or reading under a tree in the woods behind my house. I liked studying the natural world and being in it. I was alone and I was content. But my parents worried I had few if any friends.I was content alone because I'd do the same thing over and over in the same way at the same time every day. I read every Nancy Drew book in order and when I was done I'd read them again. I'd lay on my bed under the eaves and reach up to trace all the wallpaper flower patterns with my finger. I had a routine that nobody else understood and finally they gave up trying to get me to explain it. It was my security blanket, an island of safety in an insane world.
The rest of my elementary years were full of cycles of homework, teachers, recess (which I couldn't see the point of), Phys Ed (ditto) and phrases overheard at conferences such as "Could try harder" "has more potential than she reaches" and "no affect."
Since age three when I remember my brain waking up to coherent thought, I classified information, people, and experiences as useful, or not useful. Everything has a function and if it wasn't useful there was no point in trying to get me to go with it. For example, screaming audience members at the Beatles concert on Ed Sullivan was not useful. Algebra was not useful. For the love of Pete, what is the point of tetherball?? And since everything has a function and if the thing, information, or person doesn't function in my world by being useful, there is no point going on with it. End of story. The word "stubborn" came up a lot when adults referred to me. I tuned it all out.
My sister's baptism. It's not that I never smiled,
it's just that I forget to smile. My resting face
always looks like this unless I animate it
As for no affect, sometimes today as an adult when I forget to animate my face, people think I'm angry. This isn't usually a problem for me, because I don't care what people think, except at work. (In another part I'll discuss the adult autistic person and employment). I came to understand that people have feelings that get hurt and I don't want to hurt the feelings of my co-workers, so I try to remember to be animated. Sometimes I carry a note in my pocket that says how to look during certain situations. I dream about working where there are only autistic people and no one has to worry about feelings or if we do, then we just logically explain whatever emotional misunderstanding occurred and I know the other person will understand...
In high school things began to change. I became more aware of myself compared to how peers were feeling and thinking. I began to see I was "not normal." My mother used to say I was not normal but I dismissed those comments as extraneous. Of course I was normal. Since I knew I was normal, so I decided the rest of the world was not normal. But in High School with a larger school population of kids and independent social activities away from home, I saw that I had few of the same interests other kids had and they acted much much different than I did. If I was at a friend's house, her phone rang constantly. My friends would talk and laugh and it would all be so easy for them. I never knew what to talk about and my phone never, ever rang. This was perplexing but not especially worrisome.
The 'no facial affect' was still an issue. There was one High School counselor who tried to get my parents to pay attention, saying I was depressed. I must have seemed so, a hulking, ungainly, uncoordinated child with no friends moping around the school with a grumpy expression, sitting in the courtyard bench looking at the trees for long periods... lol. I didn't like school dances (too loud, also too much emotion). I hated pep rallies (LOUD), football games, hockey games, basketball games (what was the point?) or extracurricular activities (I had more fun by myself). I tried dating. It didn't go well. There were too many social conventions and emotional nuances for me to process, so I gave it up until a later time when I could handle it better.
I remember once as a teen having a fight with my mother. She was furious with me about something, and got right up in my face. Excessive facial emotions on other people at a distance are hard enough to deal with but inches away was too much to bear. I closed my eyes in order to screen it out and so I could listen to her better. From her point of view I was being completely disrespectful. She got even more angry and smacked me across the face so hard my glasses flew off and landed in the kitchen sink garbage disposal. Being a parent of an autistic kid must be very hard.
The awkward teen years. These are very difficult years
for any child but as an autistic kid, they're torture.
Social expectations are more demanding, it's harder to hide,
and those hormones make emotions very hard to deal with
An example of becoming aware I was different was going to movies. I had one friend, and to this day I don't know why she was my friend because I was morose, silent, and not interested in any kid things, but anyway because she was popular and I went where she did, there were times I was in a group. Star Wars came out in 1977. I was 16. As we left the theater, all the girls were talking at once, saying their opinions of the film. I was quiet. They asked me what did I think, but I couldn't answer. It is extremely difficult for me to say what I think of an event immediately after the event. I need a looong time to be quiet and process it. I have to think about it first. I literally cannot say what my thoughts are at that time, only later.
Of course, being 16 year old girls, by the time I was ready to say what I thought, which was the next day or the next week, they had moved on with their conversation. But how can you know what you think about something without thinking about it first? First impressions are usually wrong, and of course I didn't want to be wrong. Careful thought was called for. Not so the non-autistic person. They just blabbed whatever. This was astounding to me, and uncalled for. I learned at that time that people think differently than me and I decided at from then on that conversation was pointless.
I did enjoy studying. I loved history and literature. I had an English class where we studied King Arthur. I latched onto that and studied it obsessively. I was always like that, grabbing onto one subject and studying it exhaustively. That subject and only that subject would do.
As I reached the end of High School, I began wondering why I seemed like the only person who hated the typical High School activities and 300 other kids liked them. For example, in Junior year our Homecoming float didn't win the competition and people cried. It was obvious ours should have won, being light years ahead of the other three classes, but there was no use crying over it. It was just another confirmation that people were usually wrong.
Academically, the 'not trying' became more of an issue too. Flunking algebra meant I might not graduate high school. So I was sent to summer school. When I showed up, clutching books to chest, overly large and thick eyeglasses, in a purple velour pantsuit (more on texture later) all the other kids were shocked to see me. "But we thought you were a Brain?!" they exclaimed. That was the first time I realized other people had thoughts about other people.
I graduated High School and went off to college. College was a shock. A total shock. More on that and on adulthood in part 2.
University of Maine, Orono, 1978
