Between the ages of six and ten, I stayed up every night waiting for the sound of my parents closing their bedroom door. Then I stayed up for an extra 20-30 minutes to make sure it didn’t reopen. I was convinced that they planned to leave me in the middle of the night, driven mad by my autistic brother, Matthew.

My parents did not abandon me, and Matthew remained with us for two more years before moving into a group home. A typical day during those 12 years started off with a 4-am wake up call, followed by one parent escorting my brother and me to the car for our morning drive. Matthew begged for food he would eventually just toss in the garbage, screaming “McDonald’s” or “Jack-in-the-Box” as we made our way down the still-dark streets of suburbia. Breakfast Jacks and hash browns made up about 50% of my diet during those years, while Matt was partial to chicken nuggets drenched in Italian dressing.

After he was fed, dressed, and cleaned up, my mom and I would harness him onto the school bus and send him on his way. About every other day my mom received a phone call while he was at school, explaining how he had soiled his clothes, self-injured, or bitten a staff member (they learned not to call unless he broke the skin). After school I was shuttled off to sports practice via a carpool for which my parents never drove. I fell in love with school and sports not necessarily for the academics or the athletics, but for the hours of relative silence and calm they were able to provide. I showed up early to appointments and stayed late, anything to spend time out of the house. When I arrived home after practice, my whole family sat down for dinner at the table together, a ritual my parents gathered us for, every day, without fail. Whether it lasted five seconds or 20 minutes didn’t matter; it was the only sense of normalcy we were able to achieve.

Homework was completed between guarding the food in the cupboards and rewinding Matt’s VCR tapes. Sometimes I was instructed to chase him around our tiny yard, my parents praying that physical activity would keep him silent for the night. At bedtime, his medications either drugged him into slumber or he was awake for the night, soiling his bed sheets or leaping from his window into the front yard. Before we had a lock on his room, he would creep down the hall, waiting for my father to shout “Back to bed!” and he would scurry back into his room as if it were a game.

Those 12 years of my life were characterized by Matt’s creaky outdoor swing set, thrice daily handfuls of pills, a constant parade of respite workers, padlocks on our fridge, trapeze bars hanging from the living room ceiling, and “Aladdin” playing on the VCR for ten hours a day. My family has been kicked out of restaurants, parks, and public pools; the stigma of autism following us like a dark cloud. To call our life chaos for those 12 years would be an understatement. The usual benefits of a sibling (shared chores, free advice, companionship) were lost. I was a pseudo-only child, shipped from one activity to the next while my parents were suspended in a sense of panic, wondering what injuries he would inflict on himself or whether he would be kicked out of another school. I love my brother so much, and one of the things that reminds me to be grateful is that all of the superficial things I missed out on due to his disability pale in comparison to the normal life he lost, and to the partial loss of a son my parents have already experienced.

I remember very clearly the last day Matthew lived with us, though I was unaware of its significance at the time. The soccer carpool had just dropped me off at home. Already physically drained, I was standing in the garage going through my usual mental preparation to enter the hellfire that would surely greet me inside. I was met instead with silence, my ears ringing from the anticipated noise. I found my dad in the kitchen; for the first time I realized how much older he looked than 40. “Where’s Matt?” I asked. Always the first question asked by anyone who walked into the house. “He’s staying away for a while. To work on his medications.” A while turned into five months at the adolescent psych hospital, where large men guarded every door and Matt sat next to anorexic girls at meal times (and stole their food). Five long months. Relief at home soon turned to confusion. My parents and I didn’t know what to do with ourselves. Even the dog had lost his daily job of chasing Matt onto the school bus. They kept me in the dark about his transition into a group home, sending me off to school and sports practices as if nothing had changed. I continued bringing home straight A report cards to tack onto the fridge, to remind them that they could still be hopeful about one of their children. Matthew has been in a group home since he left the psych hospital. He has not spent a night in his own home in ten years.

My parents have given me everything I need to succeed on my own, but even they will admit they have not been able to give me the attention they otherwise would have had my brother turned out “normal.” I resented this when I was younger, telling myself Matthew was faking his autism to get more attention. As I grew, I used this lack of attention to fuel early maturity and independence. I pushed my parents to let me travel, to send me to a brand new state for college, to not worry about me when they already had ten lifetimes of worry under their belts.

When I first settled in these new places such as college and medical school, I often struggled with how to explain my brother’s situation to new people. I hated getting pity from them, but I did not want to brush over Matthew like he hasn’t had a huge impact on my life. For a while when asked about my siblings, I would mention that I had a brother and leave it at that. No, he does not go to college, yes, he lives in California, yes, we get along.

Now I tell them everything, because there is nothing shameful or uncomfortable about him. I have an autistic brother. He lives in a group home with three other young men and an incredible staff. He likes “green chips” with Italian dressing. My parents visit him every week and they are in a constant battle to find the perfect balance of medications for him. I came to medical school to meet neurologists specializing in the care of autistic teens and adults. Yes, we get along.   

For four years I volunteered with a day program that serves autistic children and adolescents. It was the same program at which, five years earlier, my brother had been one of the first members. Pictures of him as a teen are still in frames around the house, and he is famous among the original staff members. “Oh, Matthew,” they would tell me, “He was wild. I loved that kid.” I loved the work and miss it dearly, but there was something incredibly frustrating about working with high-functioning kids on the complete opposite end of the autism spectrum from Matthew. These kids could talk, could engage, could make jokes with me. They had behaviors but they were manageable. I wondered how it was possible for them to wear the same diagnostic label as Matthew. Matthew, the boy who thinks he is still 14-years old, who cannot sit still for more than five minutes, who defecates in closets and smashes televisions against the walls. Matthew, who kicks dogs and bites humans. Matthew, who occasionally forgets who I am.

People say there is nothing worse for a parent than burying their own child. I think my parents are more afraid of Matthew outliving them. They sat me down when I graduated from high school to explain the significance of having a brother like Matthew. Someday my responsibilities for him may increase exponentially, and I need to be prepared for that. He will never not be my responsibility. Sometimes I feel like I am the insurance policy on my brother’s wellbeing, the one person my parents can fully and completely trust, the daughter they have vetted to be obedient and to work hard and to do it all for her brother. Someday I could be the only family Matt has left who knows him well enough to take care of him, to prevent others from taking advantage of him, and to give him the most fulfilling life possible as an adult with severe autism.

I will forever be a part of the autism community, but this membership has not been cheap. I’ve been challenged in ways that have forever changed me and how I perceive the world. I found strength in my family and in my education, both as a learner and a teacher. I can only hope that by sharing my Matthew story I will be able to connect, deeply, with others who may be feeling the same confusion, frustration, and joy that I have felt for the past 24 years.

What is a vaccine?

A vaccine is a biological preparation that provides active acquired immunity to a particular infectious disease. The first vaccine was introduced by British physician Edward Jenner in 1796, who used the cowpox virus (vaccinia) to confer protection against smallpox, a related virus, in humans.

A vaccine typically contains an agent that resembles a disease-causing microorganism. It is often made from weakened or killed forms of the microbe, its toxins, or one of its proteins. Vaccines stimulate the body’s immune system to recognize the agent as a threat and destroy it. When the virulent version of an agent is encountered the body recognizes the protein coat on the virus and is prepared to respond. It first neutralizes the target agent before it can enter cells and then recognizes and destroys infected cells before that agent can multiply to vast numbers.

The administration of vaccines is called vaccination, and it is so far the most effective method of preventing infectious diseases. Vaccines help the body to produce antibodies, which are the human body’s defensive cells that fight off any foreign substances. We can produce antibodies on our own, but some infections, including mild ones like chickenpox, can cause some people to get very sick and die before enough antibodies are produced. Vaccination helps our bodies be prepared by “imitating” an infection so that antibodies can be formed before the infection gets deadly.

Vaccines for several diseases have been very successful and provided widespread immunity due to worldwide vaccination. For example, smallpox was eradicated by worldwide vaccination and several others such as polio, measles, and tetanus have been brought under control. The effectiveness of vaccination has been widely studied and verified. Some other vaccines including influenza, HPV, and chickenpox have been proven to be effective. The World Health Organization (WHO) reports that licensed vaccines are currently available for twenty-five different preventable infections.

In the 1950s, before polio vaccines were available, polio caused more than 15,000 cases of paralysis each year in the United States. Following the introduction of vaccines, trivalent inactivated poliovirus vaccine in 1955 and trivalent oral poliovirus vaccine in 1963, the number of polio cases fell rapidly to less than 100 in the 1960s and fewer than 10 in the 1970s. Vaccination has also reduced the number of measles infections by more than 99 percent. As well as preventing the spread of infection and protecting the people, vaccines also help prevent the development of antibiotic resistance.

Some vaccines require a second dose in order to build up a strong enough immunity, such as MMR vaccines for Covid-19. Others, such as the tetanus vaccine, require a “booster shot” after a certain amount of time because the immunity of the first vaccine decreases over time. In the case of the flu, the main targets of the immune response may change slightly from year to year depending on which flu virus strains are circulating most that year thus often requiring a new vaccine every year.

Vaccine types

Vaccines typically contain dead or inactivated organisms or purified products derived from these organisms. There are several types of vaccines in use each of which represent different strategies to reduce the risk of illness while retaining the ability to induce a beneficial immune response.

They contain either:

1. A weakened (attenuated) form of a pathogen.
2. An inactivated form of a pathogen.
3. Certain parts of a pathogen, such as its proteins.
4. A weakened toxin made by the pathogen.

Attenuated vaccine: Some vaccines contain live, attenuated microorganisms. Many of these are active viruses that have been cultivated under conditions that disable their virulent properties or closely related but less dangerous organisms used to produce a broad immune response.

Attenuated vaccines have some advantages and disadvantages. Attenuated, or live, weakened vaccines typically provoke more durable immunological responses. But they may not be safe for use in individuals with weak immunity. These vaccines may rarely mutate to a virulent form and cause disease.

Inactivated vaccine: Some vaccines contain inactivated, but previously virulent, micro-organisms that have been destroyed with chemicals, heat, or radiation. The vaccines for polio, hepatitis A, and rabies, as well most influenza vaccines are good examples of this type.

Toxoid vaccine: Toxoid vaccines are made from inactivated toxic compounds that cause illness rather than the micro-organism. Examples of toxoid-based vaccines include tetanus and diphtheria vaccines.

Subunit vaccine: Rather than introducing an inactivated or attenuated micro-organism to an immune system, a subunit vaccine uses a fragment of it to develop an immune response (hepatitis B, human papillomavirus vaccine).

Conjugate vaccine: Some bacteria have a polysaccharide outer coat that is poorly immunogenic. These outer coats are linked to toxoid proteins and the immune system is led to recognize the polysaccharide as if it were a protein antigen. This approach is used in the Haemophilus influenzae type B vaccine.

Outer membrane vesicle vaccines: Outer membrane vesicles are naturally immunogenic and can be manipulated to produce potent vaccines. Serotype B meningococcal disease vaccines are good example to this type.

Heterologous vaccines (Jennerian vaccines): These are vaccines that are pathogens of other animals that either do not cause disease or cause mild disease in the organism being treated. The classic example is Jenner’s use of cowpox to protect against smallpox. A current example is the use of BCG vaccine made from Mycobacterium bovis to protect against tuberculosis.

Viral vector vaccines: These vaccines use a safe virus to insert pathogen genes in the body to produce specific antigens, such as surface proteins, to stimulate an immune response.

RNA vaccines: An mRNA vaccine (or RNA vaccine) is a novel type of vaccine which is composed of the nucleic acid RNA packaged within a vector such as lipid nanoparticles. Many vaccines put a weakened or inactivated germ into our bodies to trigger an immune response. But instead, mRNA vaccines teach our cells how to make a protein or even just a piece of a protein that triggers an immune response inside our bodies. Among the COVID-19 vaccines are a number of RNA vaccines under development to combat the COVID-19 pandemic and some have received emergency use authorization in most countries.

Other contents of a vaccine

A vaccine dose contains many ingredients, very little of which is the active ingredient called the immunogen. Other ingredients are added to boost the immune response, to ensure safety or help with storage, and a tiny amount of leftover material from the manufacturing process. These materials can very rarely cause an allergic reaction in people who are very sensitive to them.

Adjuvants: Vaccines typically contain one or more adjuvants which are used to boost the immune response. This presents the antigen in such a way as to produce a greater action than the simple aqueous tetanus toxoid.

Preservatives: Vaccines may also contain preservatives to prevent contamination with bacteria or fungi.

Excipients: Beside the active vaccine itself, some excipients and residual manufacturing compounds are present or may be present in vaccine preparations (e.g. aluminum salts or gels antibiotics, egg proteins, formaldehyde monosodium glutamate). These are added to some vaccines to prevent the growth of bacteria during production and storage of the vaccine.

Vaccine licensing

A vaccine can be licensed after the successful conclusion of the development cycle and further successful clinical trials. Clinical Phases I–III are necessary for licensing and safety, immunoactivity, immunogenetic safety at a given specific dose should be demonstrated. Also, the effectiveness in preventing infection for populations that will be vaccinated should be proven. For each vaccine the time endurance or need for revaccination must be estimated. Vaccine manufacturers do not receive licensing until a complete clinical cycle of development and trials proves the vaccine is safe and has long-term effectiveness. Then, it has to be reviewed and licensed by a multinational or national regulatory organization.

Vaccination failure or adverse effects

Sometimes protection with vaccines fails because of failures in vaccine attenuation. It may be related with the host’s immune system as it simply does not respond adequately or at all. Lack of response commonly results from genetics, immune status, age, health, or nutritional status. Sometimes the host develops antibodies but the protection might not be adequate; immunity might develop too slowly to be effective in time; or the antibodies might not disable the pathogen completely. Additionally, there might be multiple strains of the pathogen not all of which are equally susceptible to the immune reaction. But even in this case, a partial, late, or weak immunity, may mitigate an infection and result in a lower death rate, milder complications from an infection, or faster recovery.

Vaccinations given to children, adolescents, or adults are considered safe. They may cause generally mild adverse effects. Some common side effects include fever, pain around the injection site, and muscle aches. Additionally, some individuals may be allergic to ingredients in the vaccine. Such reactions are exceptionally rare occurring in less than one in a million people for most vaccines. Severe reactions also tend to affect only certain populations such as persons whose immune systems are compromised by preexisting disease (e.g., HIV/AIDS) or who are undergoing chemotherapy.

Do vaccines cause autism?

Claims have been made that vaccines are responsible for certain adverse health conditions, particularly autism, speech disorders, and inflammatory bowel disease. Some of those claims focused on thimerosal, a mercury-containing compound used as a preservative in vaccines.

Thimerosal is a mercury-containing antimicrobial that is added to vials of vaccines that contain more than one dose to prevent contamination and growth of potentially harmful bacteria. Some people believed that autism was a form of mercury poisoning and was caused specifically by thimerosal in childhood vaccines. But those claims have been discredited. Because of all these accusations against thimerosal, it has been removed from most vaccines except multi-use influenza. Even in these vaccines, it was reduced to levels so that a single dose contained less than a microgram of mercury, a level similar to eating ten grams of canned tuna.

Misinformation and fear generated by false claims about associations between autism and vaccines had a significant impact on people regarding vaccine safety especially for kids. But in reality, most people in countries where vaccination is widespread have never experienced vaccine preventable diseases. In this case, the focus of concern for some people changed from the negative effects of vaccine preventable disease to the possible negative effects of the vaccines themselves.

Some concerns over the effects of vaccination led to decreasing levels of vaccination coverage in some areas of the world. As a result, not only were individuals susceptible to vaccine-preventable diseases, vaccination rates dropped low enough to cause losses of herd immunity thereby allowing outbreaks of disease.

Normally, germs can travel quickly through a community and make a lot of people sick. If enough people get sick it can lead to an outbreak. But when enough people are vaccinated against a certain disease, “herd immunity, aka community immunity, is formed and it becomes harder for that disease to spread to others. Community immunity is especially important for people who cannot get certain vaccines. For example, they may not be able to get a vaccine because they have weakened immune systems. Others may be allergic to certain vaccine ingredients. Newborn babies are too young to get some vaccines. Community immunity can help to protect vulnerable populations such as these ones.

If there are outbreaks of disease because of the lack of enough vaccination outbreaks may bring high costs to countries, especially in terms of health and medical care, economic strain, and loss of life. All of the world experienced this with the lack of a vaccine for COVID-19 disease in the first year of the virus’ spread.

Some people reject certain drugs or treatment methods on the grounds that they are not halal or kosher and do not comply with their beliefs. Prophet Muhammad (peace be upon him) said that “God did not send down a disease without having sent down its cure.” This Prophetic statement indicates that there are remedies for every disease yet to be discovered by scientists. Many religious scholars rule that certain things that are forbidden under normal circumstances can be allowed in times of need, which in this case is the danger of death or the risk for loss of any organ. This rule should direct faithful scientists to work harder to find drugs or therapeutic methods that fit their beliefs.

In conclusion, vaccines protect our communities through collective immunity. The World Health Organization (WHO) estimates that immunization prevents between 2 to 3 million deaths each year. Ending vaccination could be very dangerous. Even in the 21st century, many vaccine-preventable deaths still occur because vaccines are not available to everyone. One of the missions of the World Health Organization is to increase vaccine availability to everyone including poor countries.

References

• https://www.infoplease.com/math-science/health/healthcare/vaccines
• https://health.clevelandclinic.org/vaccine-faqs-how-are-vaccines-developed-and-how-do-they-work/
• https://medlineplus.gov/vaccines.html
• https://www.healthline.com/health/vaccinations#if-we-stopped
• https://www.britannica.com/science/vaccine/Benefits-of-vaccination
• https://en.wikipedia.org/wiki/Vaccine

Our hearts are broken today” said the President Obama after the school shooting in Connecticut on December 14, 2012. These words reflected most concisely the emotions all of us felt that tragic day, as our minds and hearts failed to grasp how possibly this could have happened, how come a seemingly human being could go this much lower than the wildest beasts. One of the ideas that was proposed to explain this murky situation was that the gunman had an Asperger’s syndrome, which was immediately refused by experts. “First and foremost, our thoughts go out to the families,” says Lisa Goring, vice president of family services for Autism Speaks. “We are all searching for answers, but it can be so irresponsible to label autism as the cause of this because we endanger totally innocent kids” (1). This article aims to explain what the Asperger’s Syndrome is about in an effort to save especially kids with this syndrome from another stigma that they have to deal with on top of so many other things.

Thirty years ago, only 4 or 5 Autism spectrum disorder (ASD) cases were reported per 10,000 people. Today, however, approximately 1 in 150 children across the U.S. is diagnosed with it; so chances are, you know someone affected either directly or indirectly by these disorders (2). This being the case, the debates, advocacy, and awareness activities are on the rise. Individuals with ASD show abnormal social interactions, language difficulties, repetitive or restrictive behaviors, and special interests. ASD includes Autism, Pervasive Developmental Disorder and Asperger’s Syndrome (3).

Asperger’s syndrome was first recognized by Hans Asperger in 1944 and the term was popularized by English psychiatrist, Lorna Wing, in 1981. The incidence of this syndrome is not well established, but experts in population studies estimate that two out of every 10,000 children have the disorder. It is more common in boys. They are three to four times more likely than girls to have Asperger’s syndrome (ninds.nih.gov). However, the prevalence in females might be lower because of the fundamental lack of awareness of what Asperger’s Syndrome looks like in females. A female with Asperger’s Syndrome might be considered as shy, quiet, perfect at school, tomboyish, moody, overly competitive, aloof, Gothic, depressed, anxious, or a perfectionist (disabled-world.com).

It is always challenging for people with Asperger’s to lead a normal life in spite of it because this disorder makes it hard to develop social and conversational skills. Affected people display socially and emotionally inappropriate behavior, limited facial expressions, body gestures and inability to recognize nonverbal signals. They lack interest in other people; however, they are obsessively interested in unusual and specific subjects. In addition, they prefer to follow repetitive routines or rituals because they cannot cope with unexpected changes.

Children with Asperger’s Syndrome

A child with Asperger’s syndrome may have the listed signs and symptoms (kidshealth.org):

• inappropriate or minimal social interactions
• conversations almost always revolving around self rather than others
• “scripted,” “robotic,” or repetitive speech
• lack of “common sense”
• problems with reading, math, or writing skills
• obsession with complex topics such as patterns or music
• average to below-average nonverbal cognitive abilities, though verbal cognitive abilities are usually average to above-average
• awkward movements
• odd behaviors or mannerisms
• lack of eye contact

Parents usually sense there is something abnormal about a child with Asperger’s by the time of his or her third birthday, and some children may exhibit symptoms as early as infancy. Their early language skills retain but motor development delays (for example, crawling or walking late, clumsiness) are sometimes the first indicator of the disorder (ninds.nih.gov).

Hans Asperger called the children with these behaviors “little professors” because they could talk continuously and in great detail about their favorite subjects. These little professors may have an amazing ability to recall dates, names, and events. One parent laughs about how her ten-year-old knew the scientific name of everyday things—from the sugar in the kitchen to the trees in the backyard. He would keep discussing things using the scientific classification (yourlittleprofessor.com).

Most children with Asperger’s syndrome have difficulty interacting with their peers due to the problems in understanding figurative language and tendency to use language literally. Children with this syndrome do not recognize non-literal language that includes humor, irony, and teasing. They struggle just to understand common social cues so they are mostly loners and may display odd behaviors. A child with Asperger’s, for example, may spend hours each day preoccupied with counting cars passing on the street or watching only the weather channel on television. Children with Asperger’s syndrome are also at risk for other psychiatric problems including depression, attention deficit disorder, schizophrenia, and obsessive-compulsive disorder (aacap.org).

While the more obvious symptoms of autism are usually at their most florid in early childhood, the symptoms of Asperger’s syndrome may only become noticeable with the social and functional demands of adolescence (autism.net.au). Luke Jackson, a thirteen-year-old boy with Asperger’s Syndrome from England, wrote a book named Freaks, Geeks and Asperger’s Syndrome: A User Guide to Adolescence. He wrote this informative, sincere and entertaining book about complicated topics such as bullying, friendships, when and how to tell others about Asperger’s syndrome, school problems, dating, relationships and morality (4).

The idea that every child with Asperger’s syndrome is a potential genius can put excessive pressure on a child with Asperger’s syndrome (yourlittleprofessor.com). Luke Jackson, for example, complains that he is always watching television about high functioning autistic people who can do things like play the piano brilliantly without taking lessons, draw detailed renditions of buildings they had only seen once or add numbers in their heads like Rain Man. “I find these television programs depressing,” he says. “I got all the nerdiness and freakishness but none of the genius.”

Seeing a child struggle socially and emotionally can be particularly heartbreaking for parents. Children who had seemed to be developing in normal and delightful ways suddenly retreat into their own world, excluding their loving moms and dads in the process after being diagnosed with ASDs. Learning more about ASDs can help parents take charge of their child again and find treatments and therapies that work (specialchildren.about.com). In some states, expanded services are available through public school programs. The most valuable service might be “parent in-home training” with a behavior specialist sponsored by the school. Moreover, parent education and skill building groups organized by some hospitals or health centers can be helpful for parents of youth with ASDs.

Speculations about famous people with Asperger’s Syndrome

There are many famous people for whom there is a lot of speculation that they had Asperger’s Syndrome (5 and 6), such as Albert Einstein, Benjamin Franklin, Leonardo da Vinci, William Shakespeare and Ibn al-Haytham. We may never know for sure if all these people have been affected by Asperger’s syndrome. However, most of the listed geniuses focused on something which interested them and their works were not disrupted by the everyday interactions that take up so much time for the rest of us. This might be the key factor behind all their great inventions. Then we can think of their Asperger’s syndrome as a blessing for humanity, because it does give certain strengths and brilliance to these scientists or pioneers that others do not have. In brief, Asperger’s syndrome is not a handicap, but rather a collection of strengths and challenges. If Asperger’s individuals are supported as they explore their capabilities, they can build on their strengths; they can even be the most successful people in history.

References

1. http://shine.yahoo.com/parenting/why-asperger-8217-didnt-cause-sandy-hook-school-164900109.html
2. Delaney T. and Madigan T. 2009. The Sociology of Sports: An Introduction. Jefferson, NC: McFarland.
3. Llaneza DC, DeLuke SV, Batista M, Crawley JN, Christodulu KV, Frye CA. 2010. “Communication, Interventions, and Scientific Advances in Autism: A Commentary.” Physiol Behav. 100, 268-276.
4. Jackson, L. (2002). Freaks, geeks and Asperger syndrome: A user guide to adolescence. Philadelphia, PA: Jessica Kingsley Publishers.
5. Steffens, B. 2007. Ibn al-Haytham: First Scientist (Profiles in Science). Greensboro, NC: Morgan Reynolds Publishing.
6. www.news.bbc.co.uk/2/hi/3766697.stm

The door to room 153 opened and a blond-haired, blue-eyed boy walked out alone. His eyes went immediately to the spot where he knew she would be waiting. “Mommy!” he squealed, and a smile brighter than sunshine burst across his young face. His lanky legs kicked out at a slightly odd angle as he ran towards the one person he had been waiting to see since 8:30 am that morning.

As he got near, he shed his backpack. As Mom welcomed him into her arms, the hug nearly knocked her over. “I missed you, Mommy!”

This is how you will find me at 2:30 pm every school day of the year. My name is Kimberly Parker. I am a mother of three children. My oldest son, Cooper, has autism.

When Cooper was born, I ended my career as a Sales & Marketing Director to remain home with him. I embraced this plan, as it allowed me freedom to not only spend oodles of time with our son, but also gave me time to work on creative projects, particularly writing, that I had abandoned in my climb up the corporate pyramid.

When Cooper was 16 months old, we realized he had significantly stunted language development. Specialists were seen, and we soon knew that the challenges we faced had a name: autism.

Fast forward 5+ years. Our family now consists of Cooper, age 8; Benjamin, age 6; and Kacey, age 4. My husband and I have worked hard to keep our heads above water while meeting our family’s needs, and our extended family and friends help us tremendously.

Even with all of the help, I know my son better than anyone else on this planet knows him. I say this not to sound prideful – it is a matter of fact. My husband is a wonderful father, however, since I am the person who is with Cooper the most, out of sheer desperation I have had to learn to understand my son by merely looking into his eyes. His language processing challenges make it difficult for him to understand things in the way typically developing children do.

Most parents of children with autism are in a similar position. They are the experts in dealing with their children. Because our day-to-day functioning depends upon it, we parents have to learn how to build relationships with our children. These relationships serve as the foundation for everything else that happens.

The problem is that the thousands of children who have autism will, one day, grow to be adults with autism.

I’d be a liar if I said that the question, “What will happen to my son when I die?” does not at times keep me awake at night. Does anyone know him better than I? Is anyone in a deeper relationship with him? Does anyone love him more than my husband and I do? When the loving, knowledgeable caregivers of these children pass away (which inevitably will happen), is our society prepared to care for people who are unable to fully care for themselves? It isn’t right now, but it can be.

Never mind 72 hours, 72 years would probably not be enough to fully prepare my son to face the world without the mother to whom he is attached. However, I believe that in 72 hours, I can ignite a fire that can help prepare the world for my son.

Many schools have begun to implement programs to teach kids about the various disorders and disabilities which are increasing in alarming numbers. Each school year Cooper’s classmates learn, to some degree, how to function in the classroom with a peer who has special needs. At the beginning of the year, teachers talk to his peers about autism. Kids learn that Cooper has challenges, and they are told that they must be accepting and helpful friends to him.

This is a good beginning. But it is only a beginning.

Is it enough to teach them how to co-exist in a world with people who think differently, who communicate differently, and who have extraordinary needs?

I don’t believe so.

Kids don’t simply need to learn how to tolerate one another – they must to learn how to build relationships with one another. Those who are different do not need to be merely acknowledged as different – they need people to come alongside them, people who will seek to understand the depths of their individuality.

When a child with autism is alone on the playground – it isn’t enough that other kids refrain from bullying him. Can even one child dare to come close and seek to engage him? And when that doesn’t work, will the child be content to sit near him and just share the same breathing space – because he or she understands that for a person with autism, simply having someone nearby can be enough to foster feelings of acceptance?

My vision is to see a system implemented in our schools in which children learn how to be intentional about building better relationships. We can empower and equip kids to care for their peers in a way that goes way beyond tolerance. No matter what their age, kids can learn skills at a level they can understand. Intentionally building upon these skills throughout their education will not only build a better world for kids with autism – it will build a better world for everyone.

There are experts who have dedicated their lives to helping autistic children and their parents learn to build relationships with each other. There are others who have developed peer-to-peer training sessions for school use. I believe we can take the knowledge from these experts, combine them into a complete program, and teach these skills in our schools so that parents are not the only ones who hold the key to their child’s relationships.

In my 72 hours, if given the resources, I would engage three experts: Dr. Steve Gutstein (Relationship Development Intervention specialist for children with autism), Dr. Gordon Neufeld (expert in attachment and anti-bullying) and Heather McCracken (founder of Friend 2 Friend Learning Society). They have each developed materials that address different components of this problem. However, if these experts came together, I believe a complete, life-changing strategy could be designed and presented to educators.

In 72 hours, I would seek for the four of us to spend a day brainstorming what this plan could entail, and then gather as many educators as possible to cast a vision and ignite a fire: from parents and teachers to University Education Department Heads to U.S. State Educators to the Canadian Minister of Education and all the way to the U.S. Secretary of Education. This fire would move them to action to see a new type of preparation brought into schools. Not for the sake of another program or something “to-do,” but for the sake of building a society of people who know how to love selflessly, to prepare them for life together.

With myself as the parent-champion, my son at my side, and Dr. Gutstein, Dr. Neufeld and Mrs. McCracken to speak about the psychological benefits and technical aspects, we could introduce them to a new way to do “tolerance” in the form of attachment and relationship building in peers.

Imagine…

The 72-hour period was filled with a whirlwind of activity. Along with the field experts, Mom and son spoke powerfully to hundreds of people, presenting a radical vision. They shed light on the magnitude of the problem that autistic children and adults everywhere encounter. They also began an awakening of the need to prepare for a world to come. They saw faces light up with passion and high-level educators commit to not letting the dream of a selfless society fade.

As Mom hugged her son for what she knew would be the last time, her heart was not heavy – it was full of hope. Surrounding them were hundreds of outstretched arms which she knew would take her place in helping this little boy for the rest of his life. And as she said her final “I love you,” she knew that her life had been well-lived.

In 2004, Kim’s son was diagnosed with autism spectrum disorder. She writes to equip others to better understand autism and the families who love the autistic. She enjoys connecting with parents facing the seemingly insurmountable challenges of autism and helping them find joy. She is also a Christian author and speaker. Her first published book is called Radical Love…Forever Changed. You can follow Kim’s blog or connect with her at www.SimplyCreativeWriting.com.

Autism is a childhood cognitive disorder impacting brain development. Both children and adults with autism typically show difficulties with verbal and non-verbal communication, social interactions, and leisure. Numerous physical symptoms and disorders are common as well, including impaired motor skills such as walking, repetitive behaviors, and chronic gastrointestinal problems. The causes of autism are not known, but increasing scientific evidence pinpoints the genes involved in brain development. Many genes affect information processing in the brain. More than one gene is usually involved in this disease, so autism is a spectrum disorder, and it affects each individual differently and at varying degrees. The incidence rate of autism is approximately 1 per 150 children, and it is scientifically not clear, but boys are four times more likely to be diagnosed with autism than girls [1, 2].

When we visited them, I realized that my friend’s son, who was 2.5 year old then, would not look at or talk to his parents or to us. Instead, he sat by himself in a far corner of the house and made bizarre vocalizations. He screamed when we tried to talk with him. Most of the time, he was sitting inches away from the TV screen when it was turned on and playing with the cable when it was off. He had low muscle tone and problems with fine motor skills, so he could not actively play like our son. Instead, he was repetitively flapping his hands or rocking his body. Sometimes he engaged in self-injurious actions like head-banging or hand pinching. His parents, especially his mother were depressed due to all his tantrums, crying, and behavioral problems.

Finding an appropriate setting for an autistic child can be difficult. His parents decided to send him to a day-care for half-days so that the mother could refresh her mind from all the problems, and the boy could learn to socialize and begin to talk. Just two days later, she called me, crying, and telling of his bad experience in the day-care. “The teacher couldn’t figure out what to do with our son, and she put him in a room by himself. I think he is frustrated; he is more aggressive now.” She blamed herself thinking she had not made a good decision, causing her son to suffer more. I realized that she needed psychological and spiritual support to overcome this difficult period. It was certainly difficult to have a child that did not socialize, communicate, or even look at you. But as a believer, how does faith inspire us in this situation? What counsel is given to all sufferers by the Holy Books?

The Qur’an says we are “tested” in this life with different levels of challenges, and only the rightly guided believers will deserve Paradise:

“We will certainly test you with something of fear and hunger, and loss of wealth and lives and fruits (earnings); but give glad tidings to the persevering and patient: Those who, when a disaster befalls them, say, ‘Surely we belong to God (as His creatures and servants) and surely to Him we are bound to return.” (And they act accordingly.) Such are those upon whom are blessings from their Lord and mercy; and they are the rightly guided ones” (1:155-157) [3].

According to Islam, children with mental illnesses are considered as pure and innocent as angels. Parents who take care of sick children with affection and mercy are promised heaven. The merits accruing from such illnesses wash away all sins of the parents, and particularly those of the compassionate mother [4]. Also, the Prophet Muhammad, peace be upon him, encourages us to find treatments and cures for any disease. He declared:

“God did not send down an illness for which He did not send a cure.” [5]

The Bible many times describes children as a gift from God and reminds us that unhealthy children and adults are not sinners. Instead, God reveals His works on the human body with sickness and healing:

“Now as Jesus passed by, He saw a man who was blind from birth. And His disciples asked Him, saying, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘Neither this man nor his parents sinned, but that the works of God should be revealed in him.” (John 9:1-3)

After a long discussion of the above verses and others in Holy Scriptures, my friend and her husband refreshed their minds with positive thoughts and decided to search for a special autism center to lessen their son’s symptoms and to increase his functional independence. They found a center only ten miles away. The center practices “Applied Behavior Analysis” (ABA) for the treatment of cognitive disorders. In this program, correct behaviors are rewarded with positive reinforcement, such as a snack, riding a bike, or going outside, and negative behaviors are ignored. By rewarding the positive, students lessen their aggressive or self-injurious behaviors, begin to communicate with their parents, and develop an internal awareness. When they become confident in their communication skills, they can learn anything with an ABA program. Within six months, my friend noticed a change in her son’s behavior. “He, for the first time ever, looked at us and hugged us. My husband and I were both moved to tears,” she said.

She observes that her son, now six, swims and plays with other children. He sounds out some words and practices more appropriate behaviors that they never thought they’d see.

Children with autism can come out of their shells by early diagnosis and intervention. If parents accept their child’s behavioral problems and collaborate with professional centers at an early age, children can adapt themselves well to family and social life. With patience, family members and their autistic child can experience success. What is needed is a solid determination combined with true respect and compassion and a deep trust in the goodness and mercy of God.

Esen Bakhautdin is a Postdoctoral Fellow at Cell Biology, Lerner Research Institute, Cleveland Clinic.

References

1. National Autism Association: http://www.nationalautismassociation.org/index.php
2. Autism Society of America: http://www.autism-society.org/site/PageServer?pagename=homepage
3. Unal, Ali. 2007. The Qur’an with Annotated Interpretation in Modern English, NJ: Tughra Books.
4. Nursi, Bediuzzaman Said. 2010. 25 Remedies for the Sick, NJ: The Light, Inc.
5. Al-Bukhari (1980), Jami al Sahih.

Autism is four to five times more prevalent in boys than girls and knows no racial, ethnic, or social boundaries.(1) Family income, life-style, and educational levels play no role in determining whether the child will be autistic or not. Kanner observed that many of the children with autism seen in clinic came from well-educated, intelligent parents from the middle and upper social classes.(2) Surveys conducted in different countries concluded that between 2 and 4 children in every 10,000 develop autism, usually in the ratio of 3 or 4 boys to each girl. The Autism Society of America’s (ASA) equivalent estimate is 300,000 to 400,000 individuals in America.(3)

Diagnosing Autism

Autism impacts the brain’s normal development in areas of social interaction and communication skills. Autistic children and adults typically have difficulties in verbal and nonverbal communication, social interaction, and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. Sometimes, aggressive and/or self-injurious behavior also may be present. Autistic people may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects, and resistance to changes in routines. Individuals also may experience sensitivities in sight, hearing, touch, smell, and taste.(4)

Current research links autism to biological or neurological differences in the brain. Such medical conditions as phenylketonuria (PKU), tuberous sclerosis, and fragile X syndrome have been identified in some autistic children.(5) But not everyone with these conditions becomes autistic. As there are no medical tests for diagnosing autism, an accurate diagnosis requires observing the individual’s communication, behavior, and developmental levels. However, because many behaviors associated with autism are shared by such other disorders as mental handicaps and Asperger’s syndrome, various medical tests must be tried to rule out or identify other possible causes of the exhibited symptoms.

Since the disorder’s characteristics are so varied, ideally a child should be evaluated by a multidisciplinary team consisting of, among others, a neurologist, a psychologist, a developmental pediatrician, a speech/language therapist, a learning consultant, or another professional knowledgeable about autism. Diagnosis is difficult for practitioners with limited training or exposure to autism, and misdiagnoses do occur. Difficulties in recognizing and acknowledging this condition often lead to a lack of services to meet an autistic individual’s complex needs.

A brief observation in one setting cannot present a true picture of an individual’s abilities and behaviors. Parental (and other caregivers’) input and developmental history are important components of an accurate diagnosis. At first, some autistic people may appear mentally retarded, have a behavior disorder or a hearing problem, or even odd and eccentric behavior. To complicate matters further, these conditions can occur together with autism. However, autism must be distinguished from other conditions, since an accurate diagnosis and early identification can provide the basis for devising an appropriate and effective educational and treatment program.

Indications of Autism

Children within the pervasive developmental disorder spectrum often appear relatively normal in their development until the age of 24-30 months, when parents may notice delays in language, play, or social interaction. By themselves, any such delay would not result in a diagnosis of a pervasive developmental disorder. Autism is a combination of several developmental challenges. The following areas are among those that may be affected by autism (6):

Communication: Develops language skills slowly or not at all, uses words without attaching the usual meanings, communicates with gestures instead of words, and has a short attention span.

Social Interaction: Spends time alone, shows little interest in making friends, and is less responsive to such social cues as eye contact or smiles.

Sensory Impairment: May be sensitive to sight, hearing, touch, smell, and taste.

Play: Shows a lack of spontaneous or imaginative play, does not imitate others’ actions, and does not initiate pretend games.

Behavior: May be overactive or very passive; throw tantrums for no apparent reason; show an obsessive interest in one item, idea, activity, or person; exhibit an apparent lack of common sense; may show aggression to others or self; and often has difficulty with changes in routine.

Some autistic individuals may have other disorders that affect the brain’s functioning (e.g., epilepsy, mental retardation, Down’s syndrome) or genetic disorders (e.g., fragile X, Landau-Kleffner, William’s, or Tourette’s syndromes). Many of those diagnosed with autism will test in the range of mental retardation. Approximately 25-30 percent may develop a seizure pattern at some point.(7)

As every autistic person is an individual having a unique personality and combination of characteristics, those affected show great differences. For example, some mildly affected individuals may exhibit only slight delays in language and greater challenges with social interactions. They might find it hard to initiate or maintain a conversation. Communication is often described as talking at others.

Autistic people process and respond to information uniquely. Educators and other service providers must consider each autistic person’s pattern of learning strengths and difficulties, when assessing learning and behavior, to ensure effective intervention. Individuals with autism can learn when information about how they receive and express information is addressed and implemented in their programs.

Their abilities may fluctuate daily due to difficulties in concentration, processing, or anxiety. Those who show evidence of learning one day may give no such indication the next day. Changes in external stimuli and anxiety also can affect learning. They may have average or above-average verbal, memory, or spatial skills but find it difficult to be imaginative or join in activities. Individuals with more severe challenges may require intensive support to manage the basic tasks and needs of daily life.(8)

Contrary to popular understanding, many autistic children and adults may make eye contact, show affection, smile and laugh, and exhibit other emotions, although in varying degrees.(9) Like other children, they respond to their environment in both positive and negative ways. Autism may affect their range of responses and make it harder to control how their bodies and minds react. Sometimes visual, motor, and/or processing problems make it difficult to maintain eye contact. Some autistic individuals use peripheral vision rather than looking directly at others.(10) Sometimes another person’s touch or closeness results in withdrawal even from family members. Anxiety, fear, and confusion may result from being unable to make sense of the world in a routine way.

Therapies

Therapies are available, among them applied behavior analysis, auditory integration training, dietary intervention, discrete trial teaching, medication, music therapy, occupational therapy, the Picture Exchange Communication System (PECS), physical therapy, sensory integration, speech/language therapy, Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), and vision therapy. There are various approaches to psychological therapies, and each one follows a different path. Behavioral therapy would stress shaping such adaptive behaviors as toilet training and decreasing mal-adaptive behavior, analyzing behavior through its causes and consequences to identify factors that would reward or encourage appropriate behavior, and discouraging disruptive behavior. Rewards are usually based on the patient’s values.

Behavioral therapy seems to be the most effective, for it replaces inappropriate behavior with appropriate behavior and helps the person fit into society. Psychotherapy probably would not be very helpful, for it is based on the principle that parents must become better parents if the child is to develop emotionally. As parents cannot cause their child’s autism, this premise is invalid.(11)

Functioning in Society

Autistic adults can benefit from vocational training by acquiring job-related skills, and from social and recreational programs. They can live in settings ranging from an independent home or apartment to group homes, supervised apartment settings, with other family members, or in a more structured residential care. More autistic adult support groups are emerging around the country. Many self-advocates form networks to share information, support each other, and speak for themselves in the public arena. They frequently attend and/or speaking at conferences and workshops on autism. Others provide valuable insight into this disability’s challenges by publishing articles and books and appearing in television specials about themselves and their disabilities.(12)

TEACCH, a program established by Eric Schopler in North Carolina and widely used in America, includes language- and behavior-focused intervention programs, as well as school and other agency consultation.(13) This treatment also works with parents by encouraging parent training and counseling or facilitating parent support groups.

With appropriate treatment, some behaviors associated with autism may change or diminish over time. Communication and social deficits continue in some form throughout life, but other difficulties may fade or change with age, education, or level of stress. The person often begins to use skills in natural situations and to participate in a broader range of interests and activities. Many autistic individuals enjoy their lives and make meaningful contributions to their community. People with autism can learn to compensate for and cope with their disability quite well.

Studies show that autistic people respond well to highly structured, specialized education programs tailored to their needs.(14) A well-designed intervention may include some elements of communication therapy, social skills development, sensory integration therapy, and applied behavior analysis delivered by trained professionals in a consistent, comprehensive, and coordinated way. The more severe challenges of some autistic children may be best addressed by a structured education and behavior program featuring a one-on-one teacher-to-student ratio or a small group environment. However, many other autistic children may succeed in a fully inclusive general education environment if they receive appropriate support.

Some autistic adults live and work independently, drive a car, earn a college degree, or get married. Others may be fairly independent and only need some support for daily pressures, while some depend on a great deal of support from family and professionals.

In addition to appropriate educational supports, autistic students should receive training in functional living skills at the earliest possible age. Learning to cross a street safely, buying something, or asking for help are critical skills that may be hard even for those of average intelligence. Tasks that enhance the person’s independence and give more opportunity for personal choice and freedom are important.

To be effective, an approach should be flexible, rely on positive reinforcement, be re-evaluated regularly, and provide a smooth transition from home to school to community environments. A good program also incorporates parent and caregiver training and support systems, along with general skills for all settings. Rarely can a family, teacher, or other caregiver provide effective help unless offered consultation or in-service training by an experienced specialist who is knowledgeable about autism.

Research into this puzzling condition continues. According to the Associated Press, (Nov. 28, 2000): Scientists have long theorized that about (15) different genes play a role … and now they’ve finally found one of those genes… The NIH [National Institutes of Health] called the finding a significant step in understanding what predisposes people to developing autism.15

Footnotes

1. http://faculty.washington.edu/chudler/aut.html.
2. Simon Baron-Cohen and Patrick Bolton, Autism: The Facts (New York: Oxford University Press, 1996).
3. Ibid.
4. Michael Rutter and Eric Schopler, Autism, A Reappraisal of Concepts and Treatment (New York: Plenum Press, 1976).
5. Baron-Cohen and Bolton, Autism.
6. Rutter and Schopler, Autism.
7. Ibid.
8. Ibid.
9. Ibid.
10. Ibid.
11. Baron-Cohen and Bolton, Autism.
12. Rutter and Schopler, Autism.
13. Eric Schopler, Ph.D., is a professor of psychology, editor of the Journal of Autism and Developmental Disorders, and author of numerous books and articles on autism. TEACCH is the nation’s first and only comprehensive statewide program for the treatment and education of autistic and communication-handicapped children. (www.autism-society.org/package/edkids-erics.html) He developed TEACCH in the early 1970s. Also see Rutter and Schopler, Autism.
14. Ibid.
15. www.foxnews.com/scitech/112800/autism.sml.