Understanding Aspergers Syndrome

By Elana Horwitz

Shira, a caring aunt, is concerned about her niece Chavi.

Chavi is a pretty and intelligent young woman. However, she seems uncomfortable in social situations. She hesitates to join in conversations, and seems to feel awkward when communicating with people. She is known as a quiet girl. Some describe her as shy. Chavi also appears to be slightly uncoordinated. She does not dance easily at simchos. She is also unusual in the way that she doesn’t laugh at jokes that others find humorous. In general, Chavi is a little distant from people.

A coworker suggested to Aunt Shira that her niece might have a form of autism. That made Shira laugh. How could Chavi be autistic when she is such a bright and capable girl?

When we hear “autism” mentioned, a stereotypical image may come to mind: a child who is mentally retarded, unresponsive and “lives in a world of his own”.

It may surprise many people that the diagnosis of autism includes a wide range of people.

Some people with autism are, in fact, mentally retarded, but most are of average intelligence. Others, such as many with Asperger’s Syndrome, can be even more intelligent than the average person.

Some people with autism cannot speak or communicate, but most can to some degree. People with Asperger’s can speak with extended vocabularies- but their speech may be very unusual. Or it may be only slightly unusual.

Some autistic people cannot communicate with others. Others can communicate in a limited way. Yet others, such as people with Asperger’s Syndrome, may seem to communicate in a typical way, but actually have difficulty forming and maintaining meaningful relationships, due to special challenges in the area of communication.

Asperger’s Syndrome can be overlooked by those who are not especially close with the affected person. Even someone close, like a parent, sibling, spouse, good friend, or doctor can have a vague sense of something being wrong, different, or unusual, without realizing exactly what the problem is.

My daughter Miriam is a shy girl. She’s introverted and doesn’t join in conversations or games much. Miriam seems uncomfortable sharing details about her daily experiences. She’s just different. I can’t pinpoint why her behavior seems strange.

Mordechai is chutzpadig to his parents, his peers and even his rebbe. He argues with everyone irrationally, seeming not to realize his place in relation to authority figures.

Some days, Bracha confides in me as a close friend would. On other days she acts distant, almost as if she considers me a stranger.

Asperger’s Syndrome was not widely recognized in the medical community until recent years. Therefore, while a school-age child may be correctly diagnosed these days, there are many adults with this condition who have never understood why they seem to experience so many unusual challenges.

Boys are more commonly diagnosed than girls. This may be because a boy with Asperger’s will tend to act out in disruptive ways, drawing attention to his need for professional evaluation. A girl may retreat into silence, not bothering anyone who does not attempt to draw her out. It’s easier for a girl to hide her differences and challenges. Many people wouldn’t detect the need for evaluating a sweet, quiet girl. Girls are also generally better at blending in with societal expectations, thereby masking their challenges.

What is Asperger’s Syndrome?

The Asperger’s Syndrome Support Network of Queensland, Australia explains that “if we are to examine the community in which we live, we often find people who are ‘odd’ in their thinking and ‘different’ in their behavior.” Some people appear to have many of the following key characteristics of people with Asperger’s, and some may appear to have just a few:

Difficulty with Social Relationships

People with Asperger’s Syndrome may try hard to fit in socially. They can appear to dislike human contact, but in actuality they are usually interested in relating with other people. However, they have trouble forming and maintaining meaningful relationships.

They can say things that seem insensitive or rude, without intending to offend. Even if they care about someone, they can fail to acknowledge the other person’s emotional state with a warm and empathetic response. Although it can seem as if the person with Asperger’s does not care, this is actually due to a difficulty in being naturally aware of other people’s needs. Once people with Asperger’s Syndrome are made aware of the needs of others, they are able to feel empathy to an appropriate degree. But due to self consciousness about being perceived as “different”, people with Asperger’s are sensitive about being told what to do. They may not openly express affection in ways that we typically expect of people who are close to us. They find it difficult to understand social etiquette, non-verbal signals and unclear verbal insinuations, including facial expressions, hints, sarcastic remarks, rhetorical questions and sophisticated jokes. They might express annoyance with the use of these modes of communication, stating that they simply dislike them. They have a low interest in grooming and fashion. Adults with Asperger’s often have worked hard to try to teach themselves these skills that are instinctive to most people. Children who are diagnosed with Asperger’s can be enrolled in programs that teach social skills.

Difficulty with Communication

Language development in a child may be delayed. Older people may speak fluently but may not notice the reaction of people listening to them. Thus they may appear insensitive to the listener’s feelings. They have trouble “reading” other people. Misunderstanding of the speaker’s intention can occur. The speaker’s words may be considered with suspicion and confusion. The speaker may be accused of harboring a bad motive with his words, even if his intention was not at all to hurt the feelings of the person with Asperger’s Syndrome.

If the person with Asperger’s is asked several questions, he may focus on one topic but ignore the rest. Overload of ideas can lead him to withdraw into silence, or to respond with terse answers of “yes”, “no”, or “I don’t know”. I was interested in how my neighbor Esti’s new computer job was going, so when we met at the supermarket I asked her, “How is your job? Is it interesting? Is it fulfilling?” She said “yes”.

Esti seemed to think that her brief, literal response constituted an appropriate contribution to our conversation. I might have received a fuller response had I asked her an open-ended question, such as, “What did you accomplish this week at work?”

But then again, had I phrased my question as, “Can you tell me what you accomplished this week at work?” Esti might have replied, literally, “yes”, and then retreated into silence, making our conversation very awkward.

Despite good verbal skills, people with Asperger’s may sound over-precise, often using more sophisticated vocabulary than that of most people. They may interpret words too literally. They may not appreciate jokes that make use of double meanings and therefore require a shift away from literal thinking. A person may say that he does not enjoy a certain joke. In actuality, he may find it challenging to interpret.

People with Asperger’s usually do not enjoy reading fiction because they find it difficult to relate to non-literal, abstract situations. My friends and I are raving about that new Jewish novel. We feel as if we know the characters personally, and we find ourselves caring about what will happen to them in the coming chapters, and considering what actions they might take. Shani, however, finds the book boring. She says the story is not reality, and feels no connection to what she considers to be meaningless fabrication. They find it challenging to know when or how to start or stop speaking in a conversation. They may engage in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject. Or they may contribute very little to a conversation, leaving the burden of speech with the other party, and thus creating an imbalance. They may speak in a voice that is monotonous, rigid or unusually fast.

Lack of Social Imaginative Play

Most children enjoy games where they pretend to be different characters such as Abba and Ima, or doctors and nurses. Asperger’s Syndrome children hardly ever play like this, preferring repetitive actions. For example they may enjoy arranging objects in lines or patterns.

Motor Awkwardness

They often appear clumsy and have poor coordination, for example, poor ball skills or handwriting that is difficult to decipher. They may have an odd posture or rigid gait. People with Asperger’s sometimes move very slowly and may require verbal or physical prompting to complete a task. They may have trouble crossing the threshold of a room. They may freeze in position or become temporarily mute in reaction to stress. Other repetitive actions can include rocking and hand-flapping. These actions can be soothing to the person with Asperger’s.

Sensory Sensitivity

Asperger’s Syndrome people often have an exaggerated response to sensory stimuli. Any of the five senses of sight, hearing, smell, taste and touch can be affected. Bright lighting or sudden loud, high pitched noises can cause them to react with screams of discomfort.

They may also be able to tolerate pain better than the average person. Lack of eye contact or discomfort with it may be apparent. This is because it feels overwhelming to focus on a person’s words and look at him or her at the same time. When I accidentally burned the potato kugel and the smoke alarm suddenly sounded, my nephew Chaim reacted by screaming. Even after the alarm was turned off, it took him a long time to calm down. He turned to us in anger, and implied that we had set off the alarm deliberately in order to upset him. He accused us of insensitivity in our being lax in preventing this painful experience from happening.

Special Interests and Routines

Many people with Asperger’s Syndrome may develop an obsessive interest in a hobby. They may memorize facts on a specific topic, for example, bus and train timetables. However, with encouragement and direction, interests can be developed to suit study subjects and employment. Asperger’s people require routine and structure in their lives. They can be very disturbed by changes in their daily routines, like a deviation from their regular schedules, or using a different travel route to school. They may find a day off from school or work to feel confusing unless a plan is established for the use of that time. Events and visits that differ from their routine can produce anxiety. A surprise birthday party would not work for my son. I made sure to discuss the party’s schedule in advance with him. I prepared him for all kinds of possibilities of scenarios that might happen when his classmates would visit our home.

Vulnerability

People with Asperger’s Syndrome seem somewhat naive and gullible, and therefore are more vulnerable to teasing and bullying. This can cause them to react in a socially inappropriate manner. As adults they are more prone to exploitation and are often considered eccentric or peculiar.

Difficulty Seeing the Consequences of their Actions

Individuals with Asperger’s Syndrome can be particularly good at focusing on detail. Seeing ‘the bigger picture’ requires flexible, hypothetical thinking, and often an understanding of how people affect and influence each other. People with Asperger’s Syndrome have great difficulty thinking in this manner. Shimon doesn’t intend to insult people by acting distant, speaking in a brusque manner, or saying precisely what is on his mind. He wonders why people get so angry with him. Human interaction bewilders him. It takes him so much effort to get along with people. It’s easier for Shimon not to become too close with others. It’s less painful to try not to care what others think of him.

Planning/Time Management

These skills require the ability to think hypothetically and predict consequences. Individuals with Asperger’s can find organization and multitasking challenging.

Normal or High IQ

Because people with Asperger’s are intelligent, they are able to articulate how their disability affects them. A comparison often used by them is that of feeling like they are from another planet - feeling alien to the culture of the society in which they live, because so many unofficial rules that are important to almost everyone else are meaningless to them. Social conventions seem silly and chit-chat holds little interest.

Many people with Asperger’s show a high aptitude in scientific, technical, computer or mathematical subjects, because of their logical and factual nature. The tendency for individuals with Asperger’s Syndrome to develop and nurture their “special interests” can result in great achievement. It is speculated that Albert Einstein may have had Asperger’s Syndrome. Born to a family of Jewish ancestry in Germany, he is considered one of the greatest physicists of all time. His name has become synonymous with great intelligence and genius. However, he was a loner as a child. He did not learn to speak until he was three and often repeated sentences obsessively until he was seven years old. Einstein had a lack of concern about his appearance. His uncut hair did not match the men’s hairstyles of his time. His career was centered on complex mathematical topics. The lectures he gave were said to be very confusing.

Bill Gates of Microsoft is said to show Asperger’s signs. He focuses on technical details, displays rocking motions, and speaks with a flat tone of voice. When Gates visited Israel in 2005, he was criticized in the media for spending much of his time in his hotel instead of mixing with Israelis. His understated comments about Israel having contributed to the computer industry, and his prediction that one day many Israelis will use computers in their offices and homes - a present reality - offended some businesspeople. If Asperger’s is indeed a factor in his personality, Gates’ behavior can be understood as a social impediment and communication misjudgment rather than intentionally insulting. An article called Kosher Slaughter (Mishpachah, 1998) focuses on Temple Grandin, who is a professor of Animal Science, and an engineer who designs highly complex cattle moving machinery which is used all over the world. Dr. Grandin has written two books and many research papers. Grandin has shown a way to restrain the animal while shechting that is easier, faster, causes less problems with blood flow and is a far more humane way to shecht. Temple Grandin has Asperger’s Syndrome and has made the major contribution of revolutionizing the way shechita is done around the world.

In “Our” World

Behaviors that can be interpreted as good middos may in fact hint at autism.

Nachman, a frequent Shabbos guest of ours, avoids eye contact, and hardly shares any information about himself, even when we try to draw him out. He sits quietly and observes. Is this young man extremely humble, or is there another explanation?

When invited into a neighbor’s home, Tova smiles, and stands silent and unmoving at the threshold of the doorway for several awkward moments. Is she modest and polite, or is she struggling with some sort of difficulty? It should be noted that so-called ‘Asperger’s traits’ are generalizations: people with the condition vary enormously, and because individuals become so adept at concealing or overcoming their problems, some traits will not be apparent, and others will be non-existent. The effects of Asperger’s Syndrome can be serious. Without the natural ability and tendency to conform and be accepted, individuals can find themselves unable to get employment or make friends. They can find themselves isolated and struggling to cope with the confusion and stress they experience with even seemingly simple day-to-day life.

How Does Asperger’s Feel?

The Asperger’s Syndrome Support Network of Queensland, Australia describes the way a person with Asperger’s might feel: You have just landed on another planet. You do not know the inhabitants, their language, their customs, how they interact or how you should behave in their presence. You are trying to find your way in a crowd, in a foreign country with only jumbled signposts to follow, and directions which you can only partially understand. You find it challenging to talk, use your hands, understand and use facial expressions or gestures, and you have not been taught sign language. You hear many different loud noises all at once and you are not unable to ‘tune in’ to any of them. For a person with Asperger’s Syndrome, ordinary situations can feel just like this. There are a significant number of individuals within the observant Jewish community with Asperger’s. Many families of affected individuals have kept this information private, worrying about negative consequences that might occur if they were to deal openly with this situation. It is a sensitive issue, and one that requires acceptance by, and support from, the community. With the right support and a tolerant environment, Asperger’s Syndrome need not be considered a tragedy and need not be a stigma. People with Asperger’s can be appreciated as having a different outlook on the world, as people who think in ways that are refreshing and valuable. Honesty, reliability, dedication, determination: all these are traits that are associated with the condition.

Kate Goldfield, a young adult with Asperger’s Syndrome writes:

I feel that it is only by learning about others’ struggles and truly trying to understand them that we can build a world that is safe for everyone – a world where we can grow and improve because we are taking advantage of everyone’s strengths, not just the strengths of a selective few. That’s the kind of world I want to live in. It’s the kind of world we all want to live in.

The information provided herein should not be used for the diagnosis or treatment of any medical condition. A licensed medical professional should be consulted for diagnosis and treatment of any and all medical conditions.



Marriage:

Is a specific person with Asperger’s or high functioning autism capable of a successful marriage?
Should a person with Asperger’s marry only another person with this condition, to ensure compatible ways of thinking?
Might couple’s counseling, or premarital counseling, benefit the relationship?
Should those involved in a shidduch be concerned about the genetic effect on the children that the couple might produce?

These questions require the perspective of da’as torah. Every situation is unique.

Rabbi J. David Bleich, Ph.D., in Medicine and Jewish Law, Volume 3, writes about genetics:

Every human being carries quite a number of “bad” genes. Every person has a genetic predisposition to one malady or another; indeed, we are probably all genetically predisposed to multiple diseases. Rejecting a prospective marriage partner because of the presence of a defective gene in no way assures that another prospective marriage partner is not endowed with an equally problematic genotype. Doubtless, by the time that all genetic implications are fully unraveled, no one will receive a clean bill of genetic health. If every prospective mate is rejected because of one genetic reason or another, marriage - and with it the human race - will become obsolete!

We have allowed myths to grow and stigmatization of carriers to permeate the community. As the science of genetics continues to develop, genetic links will be discovered for an ever-increasing panoply of diseases and more and more people will be identified as carriers of a rapidly expanding list of negative genetic traits. As a community, it is imperative that we embark upon a process of destigmatization.

There is a point at which we must recognize that we dare not be overly concerned and overly protective of ourselves and our progeny. “

Rabbi Bleich suggests acting prudently and rationally, while yet being “tamim im Hashem Elokecha”.


Signs of Autism
A child or adult with an autistic spectrum disorder might:
not play “pretend” games (such as “feeding” a doll)
not point at objects to show interest (point at an airplane flying over)
not look at objects when another person points at them
have trouble relating to others or not have an interest in other people at all
engage in inappropriate or minimal social interactions
avoid eye contact and want to be alone
have trouble understanding other people’s feelings or talking about their own feelings
prefer not to be held or cuddled or might cuddle only when they want to
appear to be unaware when other people talk to them but respond to other sounds
be very interested in people, but not know how to talk, play, or relate to them
repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language (echolalia)
have trouble expressing their needs using typical words or motions
hold conversations almost always revolving around self rather than others
have “scripted,” “robotic,” or repetitive speech
repeat actions over and over again
have trouble adapting when a routine changes
have unusual reactions to the way things smell, taste, look, feel, or sound
lose skills they once had (for instance, stop saying words they were once using)
lack “common sense”
have problems with reading, math, or writing skills
be obsessed with complex topics such as patterns or music
portray awkward movements
portray odd behaviors or mannerisms

Causes:
An old theory about autism was that it results as a reaction to being raised by a “refrigerator mother”, who pays little attention to the child and is physically and emotionally unavailable. This idea has long been discreditedby science.

Controversial evidence suggests that thimerosal, (a preservative containing mercury that was used in the past in childhood vaccines) causes autism. This has not been proven by science. At any rate, in recent years, thimerosal levels have been reduced or eliminated in most vaccines routinely administered to babies and young children.

New studies connect autism and Asperger’s with genetic causes. Some of the traits found in people with these conditions appear to be hereditary.

Treatments:
There are no medications to treat Asperger’s Syndrome itself, but medications may be used to treat specific symptoms, such as anxiety, depression, hyperactivity and obsessive-compulsive behavior, in cases where these symptoms apply.

ABA (Applied Behavioral Analysis) uses open-ended questions rather than asking questions that can be answered with a “yes” or “no”, to help social speech by eliciting fuller responses.

TREATMENT AND EDUCATION of Autistic and Related Communication Handicapped Children aims to evaluate and address the underlying causes of autistic behaviors. TEACCH aims to provide the skills that will permit an easier understanding of the “world” and to make sense of other people’s behaviors.

PECS (Picture Exchange Communication System) can help individuals learn a quick way of communicating using pictures. Social Skills programs can help make those with Asperger’s aware of what behaviors are expected in society, and how to conform to these unofficial codes of conduct.

SENSORY INTEGRATION methods include brushing the skin, using weighted clothing and special shoes, various exercises intended to improve coordination, and other techniques claimed to desensitize or fine-tune the patient’s nervous system.

SUPPORT GROUPS for adults, or for parents of school age children, can serve to validate people’s experiences, as well as provide practical assistance in getting employment or attaining special services at school, or accommodations in the workplace.

In some locations these treatments may be available specifically to the frum community.

Organizations to contact include:

Shema Kolainu school and center
(718) 686-9600
info@skhov.org

KULANU inclusion, support and advocacy services
516-569-3083
info@kulanukids.org

HASC TAFKID - assistance in dealing with the Board of Education and children’s evaluations, support services, advocacy and referral services.

GRASP - in the past, provided a support group in Manhattan for Orthodox Jews with Asperger’s Syndrome
mjcarley@grasp.org.


Teaching our Children about Autism
In Kids Speak 5, Rabbi Chaim Walder introduces Baylie - a girl who doesn’t understand what is happening around her socially, but has an exceptional memory. Rabbi Walder deals with the question, “can autistics feel empathy?” And he concludes that they can - it just takes effort to learn how to communicate effectively with them. The story gives a positive impression of a child affected by autism.



Elana Horwitz is a teacher of Jewish Family and a freelance writer. Her essays, poems, letters and a story have appeared in Mishpacha, Hamodia, Yated Neeman, Down Syndrome Amongst Us, Partners in Kindness and The Jerusalem Post. She has also written web content for parenting sites. Her writing appears on her website. Mrs. Horwitz lives in Raanana with her family. Her husband, Rabbi Dovid Horwitz, directs the Raanana Community Kollel, whose web address is www.raananakollel.org.