Neurological Complications With Autism

Although many people consider autism to be a neurological abnormality, many of us audies do not agree. We say that it is what it is, and we just are the way we are. Still, we could have neurological problems along WITH being autistic. Yes, people on the lower-functioning end of the spectrum will probably always be debilitated. They may never be verbal or never be able to live independently. Yes, there are audies that have Fragile X Syndrome, mental retardation, or even seizure disorders. In this article, I will not be focusing on this group. Instead, I will mention things that people with autism experience that are less obvious at first glance. Recently, I have met fellow audies and parents of autistic children who shared with me the neurological problems they deal with. I identified with their concerns very well because I too have neurological problems which, in and of themselves, I would never have associated with autism at all.

When I was a young child, my physical developmental delays were quite noticeable. Over the years, though, I’ve learned to compensate for them, somewhat. At the age of five months, I had suffered from salmonella food poisoning. The 108° fever and the three weeks I spent in intensive care nearly took my life. Even the doctors told my parents I would not live. Although everyone considered it a miracle that I did live, I point the finger at this illness as the main cause of my neurological problems, and perhaps the autism as well. During the rest of my childhood, I learned that I would need to wear glasses the rest of my life because my eyesight was very poor. Uncorrected, my right eye sees 20/200 and my left eye 20/400. Although I have a 20% hearing loss in my left ear, I suffer from chronic tinnitus in my right ear. This baffled the audiologist I visited recently because she said that tinnitus should happen on the side with hearing loss, not the normal side! My arm and hand strength and leg coordination were noticeably weaker on the left side. Also, I had a chronically weak voice and poor fricative pronunciation. On top of everything, I have always had some sort of sleep disturbance especially from my junior year of high school on to the present day.

I was definitely a funny-looking and certainly odd acting creature when I was a kid. I wore Coke-bottle glasses until I was in 11th grade, which is when my parents finally found a doctor who was willing to prescribe contact lenses for me. I didn’t learn to sit up or walk during the normal times a toddler should be able to do these things. I also wore a brace between my shoes to correct my foot flare. I was the last one in my kindergarten class to learn how to tie his shoes. Because of my coordination problem, I had a habit of tripping and falling whenever I ran or played. Some of those falls resulted in me either breaking my glasses or needing a trip to the emergency room to get stitches. In order to strengthen my left side and improve my coordination, my parents started me in piano lessons when I was four years old. The years of piano training that followed definitely made a difference. They helped mostly because my teacher was quite a demanding, old-school classical pianist. I had seen a speech therapist when I was in third grade, and again when in my senior year of high school, to improve the quality of my voice. As for my hearing and my sleep disturbances, they are today the way they have always been. My brain has become accustomed to ignoring the chronic high-pitched ringing in my right ear, and my circadian rhythm is permanently set for me to be a lifelong night owl.

Because of my developmental delays and stunted growth, my parents would take me to the Children’s Hospital of Philadelphia every year for evaluations by an endocrinologist. When I was twelve years old, my annual visit yielded the discovery of a heart defect. I had a leaking aortic valve. Now the yearly visits switched gears from monitoring my stunted (but within normal range) growth to checking on the adequacy of the pumping of my heart. At the age of eighteen, the leak in my heart valve finally became so severe that I needed open heart surgery to correct it. As for my lack of coordination, I’ve learned to compensate over the years. Even though all those years of piano lessons as a child made significant improvements, you will still occasionally find me walking into people, furniture, and doorways. Because it’s not so debilitating these days, I just laugh when it happens.

Other health woes have challenged me throughout the years as well. From April 10, 1995 until October 15, 2009, I suffered from Chronic Fatigue Syndrome. I remember the exact dates because you never forget the day you wake up with a life-changing illness, and the only thing that successfully brought it to an end, once and for all, was the occurrence of a tragic event. On October 15, 2009, I woke up suffering from a stroke. My entire right side was paralyzed from head to toe. The stroke was caused by a brain hemorrhage. Even though I spent four days in intensive care, I surprised everyone, including the neurologist who treated me, by being back to my old self again, with full-strength and energy, just six weeks later. Not only was I back to my pre-stroke self, I was back to my pre-Chronic Fatigue Syndrome self! In addition, all of the voice weakness that I still  had for all these years was also gone! I did battle with bouts of insomnia, which is common for many stroke survivors to have for several months after a stroke. The insomnia was treatable with melatonin, and it eventually disappeared all together on the one-year anniversary of the stroke.

Because I recently found out about other people with autism who have similar neurological problems, I am wondering if there is a direct connection between such neurological conditions and autism. The neuropsychologist who confirmed my autism diagnosis with the Wechsler Intelligence Scale in July of 2008 agreed that my illness as an infant must have damaged my nerve system. One particular child I learned about recently has developmental problems almost identical to mine, yet never had such an illness. In that light, I feel that it would be appropriate to place such developmental problems on a parallel spectrum. On the lower end you have such things as Fragile X Syndrome, while on the higher end you have conditions milder than what I have. This would probably make a great subject for a survey or study.

Compromising, & Other Things That Work

This article was written just for my fellow audies to read. As the sign on the treehouse reads, “No neurotypicals allowed.” However, you are invited to sit and watch from a distance, as you might learn something about the world we audies live in.

Compromising is a fact of life that anybody, audie or neurotypical, must deal with eventually in order to have a happy relationship. Whether it is a relationship between you and your parents, you and a coworker or boss, or you and a spouse, sometimes you just have to do what they ask in order for the team to accomplish its goals. Yes, we do like when things go the way we want them to, regardless of what other people think or feel. It’s not that we are selfish or obstinate, like the neurotypical world thinks we are. It is because of how very strictly we arrange the rules of our routines, the rules we live by. If you’ve read my post entitled “How I Pretend To Be (Somewhat) Normal,” you would see clearly how I sometimes just have to manipulate the rules in my head. When I give my autism seminars, I am always approached by a parent or caretaker about what to do about that loved one of theirs that doesn’t want to budge from their “bad” behaviors or ways of doing things. I guess it comes with age, but eventually you come to the realization that it is better to make the members of your team or family happy so that they can feel and know that you can contribute to this world. You just have to tweak the rules a bit.

So how does this happen? You know how you make rules in your head for every little thing? Your bathroom routine must proceed in a certain way. The way you start up your workplace for the day. The way you drive your car. The way you arrange your piles of papers. Everything follows a set of rules that only you can understand. Well, the key is this: In between each rule you have to insert a space. For example, as a rule I always shave right before I take my shower. Usually, I go right from shaving to taking my shower. Over the years, I’ve learned to insert a “space” between these two tasks, a space where interruptions and a change of plans is ALLOWED to happen. This lets me break away from the bathroom routine momentarily to do some yard work or feed my dog before going back to shower and continuing on with the routine as usual. This works so much better when your wife is adamant that the grass needs to be cut TODAY. Interruptions and change are inevitable. Compromising and doing this differently really are possible. Then you will receive lots of pats on the back for having been able to be more “flexible”. But you know, and so do I, that it was possible only because you were able to rearrange the rules!

I know that many of you have to take certain medications such as Prozac or Adderall. Anxiety and feeling that your mind is all over the place really take a lot out of you. Without these medications, it is hard to function, especially when you are expected to do so around a group of people. I know it’s not something you are proud of, but it’s also not something to be ashamed of either. Look at Temple Grandin. She has to take Prozac before she feels capable of being able to get in front of an audience to give one of her great speeches. But what if there was another way of doing things so that you don’t HAVE to take prescription medicines? In reality, there is. Even though you take only half the normal dose of those medicines because of how sensitive you are to changes, you may be just as responsive to the positive changes that the alternatives have to offer. I know this to be true firsthand. Although I’ve never taken prescription psychoactive medicines, I have taken herbal supplements instead. Did you know that 750 mg of St. John’s Wort is just as effective as 80 mg of Prozac, and has far less side effects? That’s what a study showed that was published in the November 1996 issue of the Journal of Natural Medicine. There are similar herbal alternatives to other types of medications as well, and it is up to you to try them.

But there is something that helped me far more than any herbal supplement. Well, actually a combination of things. First, you really need to go to a chiropractor and to visit him or her on a regular basis. If I go more than two weeks without seeing my chiropractor, my ability to communicate coherently, my concentration, and my hypersensitivities become worse. It is by having my nerve system free from interference, interference that happens when bones shift out of alignment and affect how nerves work, that everything in my body, including my brain’s ability to think, work better. In addition to this, I listen to my instincts, my own intuition. Many of my own successes in life are due to this. For many of us, this is not easy because we tend to doubt ourselves and become anxious very easily. What helped me to “tune in” more is practicing a formal type of meditation. By practicing meditation seriously, I can look past all the waves in the mind that make us feel “less than” and see what’s going on behind the scenes, so to speak. It’s a more insightful, “spiritual” if you will, way of looking at the big picture. These are ways in which I have helped myself to navigate the oftentimes confusing and exhausting neurotypical world. Even when reason and advice from neurotypicals seem to work against me, listening to my intuition ALWAYS produced the better outcomes.

Above all else, remember that everybody really DOES want the best for you. People aren’t out to “get” you. It may seem that way, more often than not. I know because I lived with this feeling for so many years. I had to see past this belief, and to see past my own feelings of inadequacy, before life really started handing me some great moments. There may be a troublemaker or two you encounter along the way. But on the whole, NOBODY is out to get you! There really is greatness within you and around you, even if it doesn’t seem like it. Sometimes you just have to sit there with pen and paper and start writing things down before you recognize them. Sometimes you just need to have a counselor or a mentor who points these things out for you. I myself see a very caring social worker who helps me to see things in a better light. It’s all a matter of perception, and we audies tend to feel like we are the bad guys in a good world; we are the cause of others’ misery. Everyone is indeed responsible for his or her own behavior, from the neurotypical who is a less-than-understanding crab to the person with an Autism Spectrum Disorder that points the finger at the fact that he is autistic when he makes a social blunder. If you want more insight into any of the topics I briefly discussed in this article, let’s get together and chat. All of these things that work that I mentioned here can certainly be topics in themselves for future articles and conversations. I’m an audie just like you, and I’m here to help!

Adverse Behaviors In Autism

Every time I teach my autism seminar, I have at least one parent approach me with questions regarding adverse behaviors in their child, wondering how to deal with them while frustration mounts. The answer is always the same: “Be understanding, and be very patient.” By “adverse” behaviors, I am not saying that the autistic child or adult is being purposefully bad. “Adverse” simply means that the behavior is not congruent with the neurotypical (normal) ways of doing things. Stimming, outbursts, lack of eye contact, “headbanging” routines, defiance, anxiety, hypersensitivity, and panic attacks are all examples of adverse behavior. I like to explain that adverse behaviors happen only when the autistic person is expected to act like a neurotypical. In other words, they’re just part of the daily life of a person with an Autism Spectrum Disorder.

Most autistic people will have only one or two adverse behaviors. I believe my two are hypersensitivity and “headbanging”. These behaviors are only made worse when people such as my dad, when I was a child, and now my wife try to correct them. It’s just not going to happen! Headbanging is not to be confused with stimming, and I will explain the difference later. Stimming is the repetitive flapping of hands, hitting oneself, rocking, making annoying sounds, and so on. Stimming was a very common behavior in me when I was a child. I would bang my head against the headboard of my crib and constantly want to go full-speed in a rocking chair or rocking horse. I would also sing, horribly, at the top of my lungs while rocking. Stimming was how I found comfort in the world since everything and everyone around me seemed so intimidating. During my late teens and early 20s, there was defiance. I had no motivation to follow any path, to make any friends, to get anywhere in life. This is what I call my period of “shutdown”. I knew I was different. I felt that nobody cared because nobody understood. So I just wanted out. Thank goodness for one or two adult friends, I never did self-destruct. But it was definitely a sad and lonely time.

One thing that seemed so unusual to many people was the fact that I felt right at home when in front of a crowd. Maybe it was because I had been playing the piano in recitals ever since I was four years old? Whatever the reason, I displayed practically no anxiety at all. I loved assignments in college where I had to prepare a presentation to give in front of the class. I felt right at home playing the role of “teacher”. On the contrary, though, I do experience some level of nervousness when giving instructions on performing a particular skill, such as CPR. I feel most comfortable when I am disseminating knowledge. Because anxiety is very common in people on the spectrum, it is usually dealt with by taking psychoactive medicines such as Prozac and Zoloft. Even though people on the spectrum need only half the typical dosage, I must, as a doctor of natural healing, blow the horn of advocacy for safer ways of dealing with anxiety such as herbal alternatives (such as St. John’s Wort), meditation, yoga, energy medicine, and chiropractic care (particularly upper cervical specific).

Hypersensitivity is also extremely common among people on the spectrum. Hypersensitivity doesn’t just mean being more affected by the things people say and do, oftentimes taking too many things personally or the wrong way. It also has to do with sensory input and how it is processed, such as the lighting and sounds in a room, the feel of certain textures, fragrances, etc. If there are too many hypersensitivities at one time, sensory overload occurs. For me, this would cause me to go into “shutdown” mode. When I was a trainee on the ambulance squad, I was definitely hypersensitive to all the activities going on around me during an emergency situation. Therefore, I would always shut down and freeze up as if I didn’t know what to do. I certainly did know what to do. I just couldn’t multitask until I forced myself to learn how. That’s what overload can do to an autistic person, usually causing them to either have a panic attack or an outburst. My hypersensitivities are much more pronounced and devastating when I am unrested or unbathed for a whole day. Lack of sleep can make me fidgety toward things that normally wouldn’t bother me, such as listening to music or the TV, or even having my wife hover around me. Also, I could never ever leave the house for the day unless I’ve had a shower first. Otherwise, I feel as though I have swamp scum covering me from head to toe, and even letting my wife touch my hair freaks me out. Normally, though, I handle sensory overload by turning things off, such as the radio, TV, lights, or by ignoring the (unintentional) aggressor. Unfortunately, though, when I was working in the busy hospital setting during my days as a Respiratory Therapist, this meant that I would shut off my pager without even realizing it if I was concentrating too much on another task, such as taking a patient’s vital signs.

As for the “headbanging” routines, I define these as any task that is repeated over and over again without any purpose or without any results. While stimming equals repetitive actions, “headbanging” means actual tasks. Since making social and business-related contact with people is perhaps my weakest area in life, I figured that I would certainly get somewhere as an entrepreneur if I write a great brochure and send it out by direct mail to prospective clients. In the eight-plus years I’ve been making brochures, mailing lists, spending hundreds of dollars on postage, rearranging my website, and making poor attempts at cold calling, I never received a single client through these efforts. This unproductive dead-end of doing the same thing over and over again with absolutely no results was THE final straw that caused Bianca and I to start drifting apart. It was my sincere wish to pursue marriage counseling that finally brought me to the discovery that I was autistic, thereby forming a strong loving bond between Bianca and me.

So, in the end, how are parents and caretakers supposed to deal with adverse behaviors? How does Bianca deal with mine? She just does. There is no “right” or “wrong” to correct. Adverse behaviors are just part of being autistic. Such mannerisms add color to the world, as they are part of the autistic person’s nature. It would certainly benefit the autistic person to receive counseling from a psychologist or a social worker. I myself see a social worker simply to have somebody to talk to who can help me see things from a neurotypical perspective in a nonjudgmental way while accepting myself, autism and all, as I am. As I stated earlier, adverse behaviors happen only when an autistic person is expected to act like a neurotypical. It is necessary for the parent and caretaker to take away this notion of changing the person with autism. The autistic person needs to be accepted as they are. They may never be exactly the person you want them to be. But they will certainly be comfortable being themselves.

Living By The Rules

There are different ways in which the autistic mind thinks and processes information. These different types are discussed in detail in the video "It Takes All Kinds of Minds" by Dr. Temple Grandin. No matter which kind of mind you are talking about, there is one thing that is common to all of them: all actions, reactions, and interactions are based on rules. Rules are made over time as things are categorized and differentiated. For example, Temple had to learn that not every piece of furniture that had four legs was a dining table. There are coffee tables, end tables, chair with four legs, flower stands, etc. As for me, living by the rules had to do more with how to do my job and interact with people rather than categorizing objects and animals. This led to a rather debilitating amount of cluelessness. This cluelessness could eventually be overcome only by observing results on the job and the reactions and feedback I would get from people. When the outcomes were negative, I'd think of how little my presence and my input was worth. When they were positive, I'd feel motivated to keep going.

A good example of how I learned something by forming rules was the job I had when I worked as a data trip record clerk for Penske Truck Leasing. One of my tasks was to enter paper reports that the drivers of the leased vehicles would fill out into the mainframe computer. On a daily basis, I would type between 150 and 300 reports, logging departure cities, destinations, mileages, fuel purchases, etc. To look at the piles and piles of reports left me feeling exhausted and disoriented before I even began. For the first few months I worked there, I was the slowest in a department of sixteen people. It wasn't because I didn't know how to type. I certainly could, and I knew computers well. I just moved very slowly, as I usually do before I develop a knack. Then one day I discovered something. As I was typing along, I could modify the way I typed to form certain musical patterns. I could form arpeggios when typing in the mileage column. I could bang out a quick tap-tap to enter in a state abbreviation. I would create similar genres for each column on the page. After forming these rules by which each bit of information could be easily and playfully typed, I went from being the slowest person in the department to the fastest! But it came with a price. The better I got at typing, the louder I hit the keys. Hearing the same mosaic banging over and over again all day long caused everyone around me to have headaches.

They say that one thing an autistic person cannot do is function in any job that requires a lot of distraction and multitasking. This is one reason why I am glad that I did not find out I was on the autism spectrum until I was in my late 40s, well after having become a successful ambulance attendant, fire police officer, and respiratory therapist. I would have surely been told that I could never accomplish any of these things because of how demanding they are had I been diagnosed early on. As a result, I pursued these interests and eventually learned how to excel at them, even moreso than many people of the people I worked with. I did it by forming procedural rules within my own head. It is one thing to practice and master being able to put a sling on somebody's broken arm in a classroom. It is a completely different situation when you are performing the same action when you also have three other victims of an accident to tend to, monitor their vital signs, take their health history, write a report, and then eventually regurgitate all this information to the emergency room staff. I could do all this only after months and months of making mistakes, eventually figuring out a set of rules that would "categorize" each action until they became second-nature. If a distraction would come along, as it always did, I would form a picture in my head of whatever task I was being pulled away from, thereby putting this task on "hold", so that I knew what I had to return to. For example, when assessing a patient with a collapsed lung, and then suddenly being asked to set up an IV elsewhere, I would envision myself with half a lung on one side in order to remind myself what task I had to go back to when I was finished.

Being prudent in social situations, though, took a lot more doing. There was no forming of rules. There was only figuring out what was acceptable and not acceptable by seeing the outcome, sometimes making enemies or losing “friends” along the way. In the book “Unwritten Rules of Social Relationships” by Dr. Temple Grandin and Sean Barron, rule #6 states “Not everyone who is nice to me is my friend.” Because I never had the ability to simply “fit in,” I had no idea what guys talk about or what is appropriate conversation and with whom. I found out the hard ways that it is not okay to assume that a woman is romantically interested in you simply because she talks nicely to you, even if she is married. I found out that it is not okay to repeat gossip in front of the gossip subject’s friends. I also found out that it is not okay to be mean-spirited when directing traffic as a fire police officer because the person you may be yelling at is an off-duty sheriff. It is also not okay to tell a young black female that you talk to all the time, and think that you know well, that she looks “yummy” in a photo shoot. That situation resulted in my losing the best part-time job I ever had. Because rules are people based, as rule #1 of the “Unwritten Rules of Social Relationships” states, and because you really never truly know somebody unless you have already broken an unwritten rule, living by the rules continues to be a major challenge. In that light, it is always safer for me to simply be silent and to be a loner. I have to know somebody very very well nowadays for me to even have a conversation about varying topics with them. I am far from being shy, although I have always been reserved.

The number one reason why forming any rules even happened is the fact that I had a mentor or somebody who gave me a chance. Without my boss Linda who always liked my demeanor at Penske Truck Leasing, I had job security. Because of Larry who was my ambulance driver and mentor with the former Governor Mifflin Area Ambulance Association in Shillington, PA, I learned how to be a darn good Emergency Medical Technician – one who eventually became a trainer of new EMTs for our squad. It is so very important for people on the autism spectrum to be in the company of people who believe in them. Once they have that, they can accomplish anything they set their minds to. Nobody should ever tell a person with some form of autism that they cannot accomplish their goals or fulfill their dreams. Where there’s a will, there’s a way. I had accomplished feats and did tasks that people with autism are being told all the time that they cannot handle. I did it all by forming rules. What would have helped me even further was if I had somebody who taught me what the proper rules of social interactions are. Life would have been SO much easier for me! As for now, now that I know I am on the autism spectrum, I don’t worry so much about it. I know that there is a reason (but not an excuse) for the awkwardness.