Asperger’s Syndrome is part of who I am. Not the main part. Not the best part, even. Just part. It’s a medical term that identifies a series of traits or quirks that are considered abnormal. Personally, I think that’s bunk, but I’m not a doctor. Actually, I am a doctor, but a PhD, not a medical doctor. I had a hard time accepting this diagnosis initially. I felt it was formally labeling me as limited in my potential. I’ve since been proving to myself that while everyone has limits, I can always strive to exceed my expectations.
In order to find my limits, I challenged myself. I was a very shy, but also very gung ho and goal oriented teenager. This was a direct result of how I was raised. My mom was an incredible woman who was years ahead of her time regarding childhood developmental disorders. She cared for severely disabled children by fostering them in our home. She challenged pediatricians and specialists about their initial expectations with the children she cared for, including me and my brother, Steve.
Steve was born with a congenital heart defect. He missed being diagnosed with Dwarfism by an inch. He had Fetal Alcohol Syndrome. His hands and feet were stubby, and not as agile as normal. He walked on his tip-toes because the tendons in his ankles were too short. He wasn’t expected to survive beyond age four. He lived to be thirty-one. He lived every day of his life as if it was his last. He smoked, drank, and experimented with drugs. He was a father to a child who looked like his clone, but didn’t have his challenges. He was my favorite person on earth.
I was initially thought to be deaf, and then retarded. My mom rejected both immediately, and was so disgusted by the lack of viable results that she didn’t take me back for further testing. I didn’t speak until I was five. I had a sister, Heather, who was exactly 1 year and 1 month younger than me. She was my self appointed voice. When I began preschool, I started talking. It was a traumatic experience for me. I found out I was black, and that my Dad wasn’t actually Santa Claus. We attended a private school until I was in second grade, (Steve got kicked out).
In second grade at public school, my teacher wanted me to repeat the year, because I couldn’t count to 200 out loud. My mom told her to have me write it down. I did. My problem wasn’t with counting. I just wouldn’t recite the numbers out loud. In third grade, I basically lost it with my teacher regarding whole numbers. I didn’t have the verbal skills to explain why I was so offended by what she was teaching. I brought my orange from my lunchbox into the room, and tried to demonstrate my point.
I failed, and became so frustrated, I ran home. It took me a long time to calm down enough to explain to my brother, Kevin, that my teacher was lying to us about numbers. Kevin was my Dad’s son from his previous marriage. He was several years older than me, and possibly mildly autistic himself. He is who introduced to me the world of science fiction and fantasy novels. He also trained me for my service in the Army. He joined the Air Force.
Kevin understood, and taught me fractions, long division, and basic algebra. To this day, I still have the numbers nightmare sometimes. After he taught me, my mom said I didn’t have to listen to my teacher tell lies about numbers. Instead, I practiced my handwriting, (it still sucks). Kevin was a lot like a mentor to me. He was very much into watching Star Trek and the Planet of the Apes. I watched a few episodes of both, but they frightened me.
He taught me how to salute, recognize rank, military history, and long distance running. I struggled with doing sit-ups throughout my entire Army career. On every PT test, I passed sit-ups by a margin of 1. My upper body strength retention is poor, but I got dropped for pushups so often, it never got a chance to deteriorate. But I always did well with the 2 mile run, and our morning PT runs. I’m thankful to Kevin for that. Eventually, I became the PT instructor for remedial PT. That basically meant I helped my fellow soldiers who failed their PT tests, or were overweight. I loved it. We would run around the quad behind our barracks and make up naughty cadences.
I happened to do well in school as far as grades were concerned for the most part. There were two classes in which I received low grades. Introduction To Computer Programming, and Home Economics. I got an F in Intro to CP, and a D in Home Ec. The rest of my grades were A’s or B’s prior to university. I always got a B in gym. I was a total spaz. I could run fast and had an athletic body, but if someone threw a ball at me, I would try to move rather than catch it. I couldn’t dribble a basketball and move at the same time. I sucked at sports, but I was still enthusiastic about them, which is probably why I got a B rather than a C.
My Introduction to Computer Programming class was a disaster. Not because I couldn’t learn the material, though. It was because I already knew the material, and rather than doing my lessons, I used my skills to disrupt the class. I thought my antics were hilarious. At least until I got my grade. It was the only failing grade I ever got in my life. It shocked me, upset me, and helped me understand the meaning of irony. My mom took away my computer for a week, and I had to sign a contract with her that I would never use a computer again to commit mayhem.
From age 8 until I went to basic training at 17, my Mom had us on a special diet. No refined sugars, no red meat, no added salt, and no processed foods. I was a picky eater. I wouldn’t drink milk, and would only eat peanut butter sandwiches, bananas, cooked carrots sliced like coins, and granola in a baggie. My mom told us raisins were candy, and we believed her at first. Now I hate them. Not because of the taste, but because they represent a lie.
My mom made a deal with me that I could eat what I wanted, but I had to add one new food a month. It became a ritual with us. I would experiment with all sorts of exotic fruits and vegetables that my mom would bring home for me. Then I would write a report about the experience. l had to take calcium, dolomite, papaya extract, and a multivitamin. The papaya pills were chewable and delicious. I think that was for my digestion.
My mom never treated me like I had a disability. If I came across something that challenged me, or baffled me, she would often give me a book that helped me understand, or would tell me I needed to keep trying, because it was lack of effort, not lack of ability. My mom gave me a lot of books over the years. I kept a journal that she would read each night when I went to bed. It was my most natural means of communicating with her. Writing has always been my chosen method of communicating with others. Before I could write, Heather was my voice, and Steve and Kevin understood me without words or with very few of them.
In basic training, being a picky eater was disregarded. That’s the nicest way I can state it. You went through the chow line after drinking a full glass of water. The food was put on your tray, and you sat down to eat in silence. You were given a carton of milk and another glass of water with your meal. There were other drinks, like soda pop and juice, but they were off limits to us.
The diet in basic training is scrutinized by dieticians to meet the caloric and nutritional needs of a large group of people, while avoiding common allergens. This meant bland. Lots of casserole dishes, beans, and salad with only lettuce, tomato, and carrot. No dressings, no salt and pepper, or other flavor enhancers were available to us. You ate what was on your tray as quickly and quietly as possible, and then deposited your tray on a stack on your way out.
I’ve always been a slow, picky eater. I didn’t suddenly overcome this in basic training. I was always the last one to finish eating, and I always had food left on my tray that I refused to eat. This resulted in my having KP (kitchen patrol) pretty much every day of my basic training. Having a drill sergeant put her face inches from mine and yell at me to eat some sort of chicken fried steak patty didn’t faze me in the least. I was, and am stubborn.
I’ve stayed up all night sitting at our dining room table at home with a plate of spinach or brussel sprouts placed before me. I never once ate whatever disgusting item my mom was trying to force me to eat by making me stay at the table until it was gone. I could hear kids outside playing, but wouldn’t budge. My mom would periodically check up on me, and catch me fidgeting or singing, and make me stop. I was there to eat, not enjoy myself.
She never knew that after about 30 minutes, I would tune out the situation completely, and think about things I loved. I would eventually fall asleep, and she would remove the plate in disgust, dump its contents in the trash, and send me to bed. It didn’t bother me much. I would have done better if I could have read during our epic battles of wills. Food textures were more of a barrier to my diet than taste. Whoever decided that brussel sprouts are edible is a jerk.
The exotic foods that I ended up liking were coconuts (whole so that I could split them outside with an axe), kiwi, cooked and then cooled broccoli, grapefruit, and turkey legs that reminded me of the Flintstones. I would drink the coconut milk, and chew the meat, then spit it out. Gross, I know. But it would make me choke if I tried to swallow it. I have issues around swallowing. Until I was about twelve, I couldn’t drink out of a regular cup because I couldn’t gauge how far to tip it. I would end up tipping too far, and gulping huge amounts of air and liquid, resulting in stomach cramps, choking, and a mess. I used bendy straws instead. Eventually, I learned how to sip, but even to this day, I have accidents with drinking. If I’m overtired, or distracted, choking and a mess ensues.
I don’t cook. I will heat things up in the microwave. I can also do ramen noodles with the tea kettle. It has an auto shut-off feature. I had a fire when I was in my early twenties. It scared my Mom more than it did me. New rules were written up. I have a panini grill that I use to make my grilled cheese sandwiches. It involves a routine that includes unplugging it, cleaning it when it cools, and putting it away.
I generally eat frozen Mac and Cheese by Michelina’s, grapefruit, bananas, peanut butter sandwiches, microwaveable soups, and broccoli. I also eat bagged lettuce as a snack. I’ve discovered I like watermelon, mango, and peas. My grocery store sells the fruit already cut up in a container by weight, and I get frozen peas and nuke them. I still take a multivitamin. I tend to eat the same things every day for each meal. I have chronic kidney stones, which is probably related to this. I’m trying cranberries next month, and that should help if I like them.
I still don’t drink milk ever. I don’t eat red meat. I eat hard boiled eggs and drink ensure shakes. I think I do fine with my diet and food prep. My sister, Gayle, thinks my weight is too low, but I was recently told that it will level out on it’s own soon, so I’m not concerned about it. I’ve always been hyperactive and I usually run daily. The running isn’t negotiable. It’s necessary for my overall health to exercise daily. When I don’t do it, I tend to get sick a lot, and struggle with depression and panic attacks.
When I exercise daily, I can fight off depression with my coping skills, and my anxiety is tolerable for the most part. I don’t put myself in situations that stress me out if I can help it. Right now, grocery shopping is my biggest constant stressor. I hate how grocery stores are set up. I wish they were less of an assault on my senses. It would be so easy to set up a grocery store for people on the spectrum. Instead of having all the food out and creating competing, overwhelming odors, instead keep them in a back room. Go up to the counter, and give them your iPad with your order, or tell them out loud what you want.
That way the produce people can wear gloves and only handle fruit or only vegetables, and you don’t have to worry about who has touched your stuff with their bare hands while shopping, and stuff like that. The smells and bright lights could be eliminated, or at least minimized. The sounds of people pushing carts about, and talking to people could be eliminated too by having them come by appointment instead of a bunch at the same time. No more waiting in lines with people who stand too close and use too much perfume or cologne.
It would make my life so much easier. I want to build an autism village eventually. One where anyone can live, but everything is setup to make life better for people on the spectrum. I liked living in the barracks when I was in the military a lot. I liked having just my room and bathroom, and not needing to maintain an entire apartment. I liked having a group dayroom where we could do activities and crafts. I liked having other people about who didn’t talk to me for no reason beyond a head nod. It was the perfect level of socializing for me. Completely optional, non-intrusive, and still feeling like I was on an amazing team.
I liked how the Army assigned everyone a buddy. You and your buddy got along. It wasn’t optional. You helped each other. You looked out for each other. You were only whole when together in basic training. In permanent party, you had a roommate who fulfilled that role. You always knew where your roommate was. You knew what kind of music your roommate preferred, and you shared things. You covered for each other. I never gave country music a chance until I had a roommate who loved it. It was my stereo, but since we were roommates, she got to play her music as often as I did mine. I was into Whitney Houston at that time, and would play I Will Always Love You over and over while singing along.
I learned to like country music, and my roommate learned to tolerate my idiosyncrasies. There was no other option. I want to create dorms for people with disabilities and use the buddy system so that one’s strengths complement the deficiencies of the other. In doing so, it would allow a lot of people who are currently living with their families beyond reaching adulthood to become independent. Not in the same sense as is common, but in a way that works for them. It would eliminate a lot of issues in my opinion.
I have very low tolerance for parents who speak negatively about their autistic child. It’s very difficult for me to read that sort and not engage. I have very strong views about autism, as do others, I’m sure. However, being an autistic person who has advanced to independence in my adulthood is where my expertise comes into play. My experiences are firsthand. I don’t think autistic children are nothing but a burden, and pretty much despise anyone who thinks this.
When a parent takes on that attitude, then they are abusers, not parents. If you see a child that is alive, and struggling to exist in this world, and you can only see how it affects you and your future, you need a serious attitude adjustment. Autism is only tragic when the parent or parents don’t pursue a means of reaching their autistic child with the necessary fervor to successfully connect.
Nobody is better equipped than a loving parent is when it comes to connecting with their child. It’s a challenge, not a tragedy. If you’re not up for the challenge, then adjust your attitude. You chose to procreate. For whatever reason, your child was born autistic. This is reality. You can’t run from this, and still be a parent. As an adult human being who is capable of carrying a child to term, delivering him or her into this world, and keeping him or her alive long enough to obtain their diagnosis of autism, you are up for this challenge.
Nothing about being a parent is easy. It’s always a challenge, regardless of the neurological variety of your child. An autistic child is born to a world that doesn’t fit properly. It’s like being dropped off on Mars as an infant, and trying to blend in with the aliens. You are a species of one. Your loving parents are charged with the duty of finding a way to communicate with you. You don’t share a common language at first. As you grow, you pick up on theirs, always listening. But they struggle to pick up on yours. You are the only one on the planet who speaks your language.
You, as a child, try everything to teach them. It’s so hard. Everything is new. So many distractions and sensations, it’s painful just being awake sometimes. You take in everything, but don’t know how to zoom in on the things that are important to those around you. Eventually, you form a rudimentary form of communication. It’s not concise or perfect by any stretch. Lots of frustration results. You start to feel anxious all the time, because holy shit you’re on the wrong planet.
Now tell me. Who is being challenged here? The answer is everyone who loves the child, but mostly the child. Never forget that your autistic child loves you back, and wants you in their world, but has to first learn how to navigate your world, language, and signals. This can take a lifetime, or it can take a childhood, or it can take until they are no longer a child, but still emotionally as vulnerable as a child. There is no way to predict this.
You can’t fix your child. You can’t cure autism. You have to fight. Parents need to be a team prepared to battle for their child. There will be wars. You can win all of them. You can reach out to autistic adults online, and get information about what worked for them. You can reach out to each other and keep your team strong. You can reach out to other parents who have autistic children, but be careful. If that parent has an attitude problem, and has nothing but negativity to share, keep looking. Negativity and despair is contagious. If you get too close, it’ll attack you.
Being a good soldier team for your autistic child can be fun, rewarding, energizing, and a huge boost to your whole family’s self esteem. Train together. Go for walks. Set up an obstacle course in your backyard, and conquer it as a family. Give pep talks, high fives, and do victory dances. Talk about your battles as if they are something to be conquered. Have strategy meetings as a family, and listen to your child or children, as they have valid input that will blow your mind if you allow them to share it.
Get matching t-shirts that identify your family as the team that conquers challenges left and right, and never gives up. This is the attitude that will help you succeed. By succeed, I mean by figuring out how to make your family work as a loving, healthy unit of people who fight hard when necessary, play hard to recover, and have an overall sense of joy in their lives because they know it’s something they face as a team. No two families are alike, and having an autistic child can make the differences more obvious. However, different that works is awesome. Creativity is your friend. Don’t fall for predators out to make a quick buck out of your family’s challenges. If it sounds too good to be true, then keep walking.
Personally, I think it’s important for a family unit to keep a record of their lives in some way. There are lots of ways that this can be achieved. Photos, drawings, writings, vocal recordings, etc. One thing I’ve learned as an autistic adult, is that my parents won’t always be around. When mine died, I had these records to remember, and look back. It was like a warm blanket on a very cold day to have these things.
I also think it’s important for parents to grieve the loss of the child they thought they were going to have, when their child turns out to be autistic. It’s not about your actual child. It’s about your expectations. Anticipating a child is a big deal. I’ve never had a kid, and even I know this. The planning, the imagining, and preparing. These are normal things to do when expecting. When that child arrives, and it’s not what you were expecting, that can be traumatic. It’s natural to put all of your hopes into what you want your child to be. I think all parents do this.
It takes nothing away from your actual child when you acknowledge the unmet expectations. It’s not as if you’re rejecting the child you actually got. It’s saying, I thought I was going to have this life, and instead, I’m having this one. I’m going to feel sad for a bit, over the life I won’t be having after all, and then I will embrace and live the life I was given instead. The reason I think this is important, is because it will allow you to heal from the disappointment, and not bury it, where it can leak out as resentment toward your actual child. It can leak out as blaming your spouse’s genes, or vaccinations, or other excuses to feel victimized and resentful.
Of course it’s a disappointment to have an autistic child. Nobody says, I hope our baby turns out to be autistic. So be honest, and let yourself grieve. Your actual child will lose nothing by having parents who take care of their own emotional needs. Instead, your child will eventually observe these healthy behaviors. Your autistic child sees and hears everything within view and earshot. Whether or not they react in any way matters not at all. Don’t ever say something like, “I wish we didn’t have an autistic child” within several miles of your autistic child.
While he or she will most likely not react at all externally to such a horrific statement, it will wound deeply. Never assume your child is dumb. Think of them as an alien to this world, who is smart and sharp, and taking everything in, and remembering it all verbatim. Thats a good way to empathize, and eventually find a common ground on which to communicate.
Lastly, don’t hide your childs autism from friends, relatives, or other siblings. It’s not shameful. Educate them all, including your autistic child about your discoveries. You get to be a scientific investigator who is allowed first contact with a new species with your autistic child. While they are of course human, their are wired in a way that makes them alien. Your discoveries will be victories, and the goal is joy. Don’t worry about what will my autistic child do when I die. We sense that. It makes us super anxious. Instead, develop a strategy with your autistic child. Set goals. Help each other learn new skills, and build on them over time.
My mom taught me how to do laundry when I was thirteen. She taught me in my language. I used measuring cups, and very accurately added the right amount of detergent. I had a chart to know which settings on the machine to use with various loads. I was the laundry person. It was my chore, and I rocked at it. I started with just measuring the detergent. Then I learned to separate colors, darks, and whites, and put them in their respective piles on the floor. Next, I learned how to turn the knob to the right setting, pull it out, and start the machine. Small steps, and lots of victories gave me the confidence to move on to the next step.
My mom was big on charts. She would use laminated cardboard and a grease pencil. Charts hung all over our house. I still use them. I used them in the Army. The Army uses manuals instead of charts, but they’re excellent at pictographically explaining a process step by step. I would follow the steps on the chart, and put an X in the designated space when I completed each task. I loved doing this. I still love doing laundry now.
My mom was also big on making up songs that explained rules. It helped immensely. I was always a rule follower, but if I didn’t understand the rules, I became super anxious. My mom had a low tolerance for hyperactivity, which meant Steve and I did a lot of laps around the block when we would drive her mad with fidgeting and touchy-itis, (the disease of feeling compelled to touch everything you shouldn’t).
I’ll share more about how my Mom taught me the necessary skills to be self sufficient as the week progresses. Hopefully not in posts as long as this one.