Launching Adult Children With Aspergers

[Pages:13]Launching Adult Children With Aspergers:

Guide For Parents Who Want To Promote Independence

~ Theoretical Background ~

In Part I of Launching Adult Children with Aspergers, we will be looking at Aspergers in adulthood (i.e., 18-years-old and above) in order to lay the groundwork for Part II, which will discuss promoting independence in these adults.

Introduction--

Aspergers is a pervasive developmental disorder at the highest end of the autism spectrum. People with Aspergers develop language normally, but often have difficulty with social interactions, fine and gross motor coordination, and eye contact. They may be extremely passionate about just one or two topics, with little patience for small talk. They also may struggle to handle normal daily activities, such as organizing time, managing conflict, or even facing the sensory overload presented by malls and grocery stores.

Adults with Aspergers may appear painfully shy, or they may be extremely outgoing - sometimes to the point of being "in your face." That's because people with Aspergers often misinterpret social interaction.

While there are therapies available to alleviate symptoms and build new skills, there is no treatment which will cure Aspergers. That means the individual with Aspergers is under no obligation to seek a professional diagnosis, or to act on a diagnosis once he has it. There are, however, good reasons to consider seeking a diagnosis, particularly if one feels that Aspergers may be causing problems or distress.

If one decides to seek a diagnosis, I recommend seeking out individual therapists, neurologists, and autism centers that are familiar with tests for Aspergers. The most critical point is that one chooses a therapist, neurologist or center with significant experience in diagnosing adults with Aspergers. Appropriate diagnosis will involve a variety of tests that focus on intelligence, "adaptive" social and communication skills, and personal developmental history. An experienced professional can help distinguish between true Aspergers and other disorders which have some of the same or similar symptoms (social phobias, anxiety, etc.).

The number of Aspergers adults, like the diagnosis, is hard to pin down. Anecdotal growth in their ranks and a burgeoning online "Aspie" adult subculture that includes dating sites, advocacy groups and chat rooms raises the question: Are we starting to discover generations who escaped diagnosis? The condition officially wasn't recognized until 1994, which leads people to believe doctors are playing catch-up with adult diagnoses.

Aspergers Diagnosis in Adults--

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After the question of Aspergers is initially raised, many adults and their family members wonder, "Should I pursue an official diagnosis?" For some individuals, doing their own research through books, on the Internet, and through support and information organizations provides enough answers and the best explanation regarding challenges that one faces and strengths that one possesses. Others want the corroboration of a professional.

Official diagnosis is necessary if one wants to apply for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). A diagnosis is needed to request "reasonable accommodations" under the ADA.

How do you get an "official diagnosis" of Asperger Syndrome?

In addition to those with an MD or PhD, any professional with the credentials and expertise to diagnose any other condition may also make a diagnosis of Aspergers. Such professionals may be social workers (MSW), master's level psychologists (MA), or other mental health professionals.

Many individuals pursue neuropsychological testing with a neuropsychologist (PhD) or a psychiatrist (MD). As a result of this testing, it may be determined that the individual has Aspergers, something related to Aspergers, or something different. This will give a fairly full picture of strengths and challenges and of how one's brain processes information.

Neuropsychological testing is not required to get an "official diagnosis". To apply for Social Security, one must receive the diagnosis from an MD or a PhD.

The Asperger's Association of New England [] offers the following words of encouragement:

Is it ever too late to discover Aspergers or seek a diagnosis?

It is never too late for an individual to increase self-awareness in order to capitalize on strengths and work around areas of challenge. Knowing about Aspergers gives the individual an explanation, not an excuse, for why his or her life has taken the twists and turns that it has. What one does with this information at the age of 20, 50 or 70 may differ, but it is still very important information to have.

In early adulthood, one may use the information to plot a course through college:

A single room to decrease social and sensory demands and to have a safe haven Join interest-based groups (so that socializing has a purpose) Plot a career that matches interests and abilities Possibly live at home (to minimize the number of changes all at once) Request reasonable accommodations at school or at work Take classes part time (to account for executive functioning/organizational challenges)

In middle adulthood, one may use the information to:

Ask for accommodations at work, or pursue work that is more fitting Do a life review, understand why careers and relationships have or have not been successful Improve on relationships or pursue better matches

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In late adulthood, one may use the information to:

Do a life review If possible, customize one's environment to be comfortable and accommodating to the

strengths and challenges of Aspergers Renew and/or repair relationships affected by Aspergers

Regardless of age, one may use the information to:

Consider disclosure to family, friends, co-workers Find other people with Aspergers with whom to compare notes (in-person or online) Find people who share similar interests Work differently with helping professionals (with an emphasis on concrete coaching help,

building of life skills vs. insight-oriented therapy)

If I know someone who I think has Aspergers, should I tell?

Yes. My bias is that it is better to know than not to know. If you have Aspergers and don't know, it affects you anyway; if you do know, you may be able to minimize the negative impact and leverage the positive. Without the knowledge that one has Aspergers, one often fills that void with other, more damaging explanations such as failure, weird, disappointment, not living up to one's potential, etc.

How do I tell an adult that they may have Aspergers?

Lead with strengths! Most people with Aspergers have significant areas of strength (even if this has not been translatable into tangible success). Bring up areas of strength with the person with suspected Aspergers. Next, tactfully point out the areas in which they are struggling. Then, suggest to them that there is a name for that confusing combination of strengths and challenges, and it may be Aspergers. You may lead them to or or other resources for further information. Provide support along the way.

Common responses to this information may include:

ANGER: "How come no one ever told me before? I've lost so much time and opportunity not knowing!"

BARGAINING: "Maybe there's a cure for this." DENIAL: "I don't have that!" DEPRESSION: "Life will never be any good if I have this disorder." RELIEF: "I've always known there was something different about me." SHOCK: "Oh my God. This is terrible!" TAKES ONE TO KNOW ONE: "If that's me, it's you too!" ACCEPTANCE: "O.K. So I have Aspergers. It's not a death sentence!"

Due to misunderstanding their behavior, adults with Aspergers can be seen as selfish by their family members. Other unfair labels can be:

Cold

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 Egoistic Ridged Uncaring

Their behavior might appear to be unkind or callous. This kind of labeling is unfair and has nothing to do with behaving inappropriately on purpose. Adults with Aspergers are neurologically unable to see things from the other person's point of view. They are frequently told by their coworkers or partners that their actions or remarks are considered painful or rude, which comes as a shock to them since they were never aware of this in the first place. Therefore, it is important to get a diagnosis so people around them understand their behavior better.

Typical Adult Symptoms--

The Triad of Impairments:

Aspergers is characterized by something known as the "triad of impairments." This means that problems will be experienced to varying degrees with imagination, social communication, and social understanding:

1. Imagination: This does not mean adults on the autism spectrum lack creative abilities, often the reverse is true. However, they may have trouble imagining alternative outcomes to given situations, and find it hard to predict what will happen next. This often leads to anxiety and can result in obsessions with rigid routines, and severe distress can arise if routines are disrupted. These difficulties with imagination may cause problems with making plans for the future, organizing one's life sequencing tasks. Some people with Aspergers over-compensate for this by being extremely meticulous in their planning, and having extensive written or mental checklists.

2. Social communication: Difficulties often crop up in the social aspects of communication. This can involve difficulty understanding gestures, body language and facial expressions of others. This difficulty in understanding the context of social interaction means adults on the autism spectrum may not be aware of what is socially appropriate, and they have difficulty chatting or choosing topics to talk about. People with Aspergers may not be socially motivated because they find communication so difficult, so they may not have many friends and they may choose not to socialize very much. Some of these problems can be seen in the way people with Aspergers present themselves. For example, classic traits include difficulty making eye contact, anxiety in social situations, repetitive speech and difficulties expressing themselves especially when talking about emotions.

3. Social understanding: Adults with Aspergers may have difficulties in group-situations. They might not choose appropriate topics to discuss, and find small talk and chatting very difficult. They may take what people say very literally and have problems understanding double meanings in teasing, irony and sarcasm.

More males than females have Aspergers. While every person who has the syndrome will experience different symptoms and severity of symptoms, some of the more common characteristics include:

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 Adherence to routines and schedules, and stress if expected routine is disrupted Average or above average intelligence Difficulties in empathizing with others Hampered conversational ability Inability to manage appropriate social conduct Inability to think in abstract ways Problems with controlling feelings such as anger, depression and anxiety Problems with understanding another person's point of view Specialized fields of interest or hobbies

Let's go into more detail regarding symptoms...

Special Interests-- Individuals with Aspergers are sometimes found to have an intense or even obsessive interest or hobby. Sometimes these continue for one's entire lifetime. However, in some cases, an individual may get smitten with a completely unrelated activity. However, this obsessive involvement with particular topics helps them in gaining an amazing insight into those fields. These topics could vary from computers to knowing how to play the guitar. Encouraging such individuals to continue with their interest helps them to acquire an in-depth knowledge in certain fields. This could help them to gain employment in their fields of interest.

Love for Routines-- Adults with Aspergers seem to follow routines and rituals religiously. They do not take very well to a sudden change in their daily time table, and have set hours for everyday work. The reason behind such mechanical behavior is not very clear. However, it could be an attempt of further simplifying even the simple things that baffles the mind of an individual who suffers from Aspergers.

Lack of Social Imagination-- Although adults with Aspergers can be accomplished musicians and writers, they are unable to imagine alternatives to social incidents. They cannot predict a normal course of action according to social norms. For example, going to a wedding reception of a newly married couple may baffle them.

Difficulty with Social Interaction-- Their inability to communicate hampers their ability to maintain friendships. They might be confused at the way other people behave, because they are unable to understand social ways of conduct. They may lose interest in people and appear aloof most of the time. They are often mistaken as ignorant and vain individuals.

Difficulty with Social Communication-- People with Aspergers often find it difficult to understand others and express themselves. They fail to interpret gestures, facial expressions and change of tone. They are usually at a loss in choosing a topic to speak on, and do not know when to start or stop a conversation. They are very literal in what they say and fail to comprehend complex words and phrases, expressions like metaphors and even jokes. The best way to interact with individuals with Aspergers is to keep one's sentences short and concise.

Trouble Understanding Emotions-- A person with Aspergers may have trouble understanding the emotions of other people, and the subtle messages that are sent by facial expression, eye contact and body language are often missed. Because of this, a person with Aspergers might be seen as egotistical, selfish or uncaring. These are unfair labels, because the affected person is neurologically unable to understand other people's emotional states. They are usually shocked, upset and remorseful when told their actions were hurtful or inappropriate. Research suggests that the

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divorce rate for people with Aspergers is around 80 per cent. Social training, which teaches how to behave in different social situations, is generally more helpful to a person with Aspergers than counseling.

Mindblindness-- Imagine a movie that begins with the following scene: A woman enters a bedroom, walks around in it, open a few drawers, and then leaves. Most people could not witness such a scene without thinking about the woman's behavior. Maybe she was looking for something she thought was in the bedroom. Or maybe she heard something in the bedroom and wanted to find out what made the noise. Or maybe, we might even imagine, she had intended to go into the kitchen and forgot where she was going.

All these explanations are based on our inferences about the woman's mental state. What we are attempting to do, in essence, is read her mind. Most of us engage in such mind-reading all the time. Without it, we would be "mindblind," unaware of other people's mental existence, of the existence of thoughts, emotions, intentions, knowledge and memories. We would be unable to make sense of the actions of others, a terrible dilemma for a member of a social species called "Aspies."

Tragically, "mindblindness" is not the product of an idle thought experiment or a piece of science fiction. For children and adults with Aspergers ? neurological disorder that often interferes with, among other things, the ability to develop normal human relationships ? "mindblindness" is all too real.

Sexuality Issues--

Studies suggest that affected people are as interested in sex as anyone else, but many don't have the social or empathetic skills to successfully manage adult relationships.

Delayed understanding is common; for example, a person with Aspergers aged in their 20s typically has the sexual codes of conduct befitting a younger teenager. Even affected people who are high achieving and academically or vocationally successful have trouble negotiating the "hidden rules" of courtship. Inappropriate sexual behavior can result.

Let's go into more detail regarding sexuality issues...

Adults With Aspergers May Present the Sexual Behavior of Teens-- Since Aspergers is a developmental delay, adults may experience sexual behavior similar to teens. They may be delayed in their social skills, which would manifest in their sexual relationships. These adults need to be made aware through observation or research which sexual behavior is age appropriate. Obsessive behavior is a symptom of Aspergers and may carry over to sexual relations. Also, some medications used to treat symptoms of the syndrome may also impact sexual desire.

Intimacy Can Be a Struggle-- Individuals with Aspergers struggle with the back-and-forth nature of intimate relationships. Dating and courtship can be confusing, as they rely on so many subtle or hidden rules and meanings. A person with Aspergers may find empathy a foreign emotion, causing the other partner to feel isolated and alone. With social skills training and behavior therapy, the skills necessary to achieve an intimate relationship are within reach.

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Sensory Issues May Impact Sexuality-- Hypersensitivity or under responsiveness are common in people with Aspergers. This can impact their sexual behavior, either reducing the desire to be close or causing them to be overly needy of sex. When it comes to sexual behavior, they may not understand boundaries or limits.

Sexual Relationships Are a Challenge-- The subtle cues of dating and sexual relationships may be difficult for people with Aspergers to navigate. Aspergers is commonly known by a lack of social awareness or skills, communication difficulties, obsession with a particular topic or subject and poor coordination. Their social skills may impact the type of sexual relationships they develop. There is very little research into sexual behavior and people with Aspergers. However, most people with Aspergers show an interest in sex. Society's norms on sexuality will not be intuitive to the person with Aspergers. The subtle cues of dating and sexual relationships may be difficult to navigate.

Love and Affection--

Adults with Aspergers have difficulties understanding and expressing emotions ? and an emotion that is particularly confusing to them is "love." Typically, adults enjoy frequent expressions of affection, know how to express it and communicate feelings of love, and know when to repair someone's feelings by expressions caring.

An adult with Aspergers may not seek the same depth and frequency of expressions of love through acts of affection, or realize that an expression of affection is expected in a particular situation. He can be bewildered as to why his partner appears to be "obsessed" with expressing love. Also, an Aspergers adult may be immature in his expressions of affection, and sometimes may perceive these expressions of affection as aversive (e.g., a hug may be perceived as an uncomfortable squeeze that restricts movement).

There is a "relationship continuum" from being an acquaintance to being a partner. People with Aspergers can have difficulties at each stage on this continuum. To progress along the relationship continuum from a friend to a boyfriend to a spouse, an adult with Aspergers needs to understand the art of flirting and romance in order to accurately read the signals of mutual attraction. These abilities are not intuitive for Aspergers adults.

One of the difficulties for people with Aspergers can be to correctly interpret someone's intentions. An act of kindness, for example, can be perceived as a signal of a deeper level of interest or more personal than was intended. For example, I have had to explain to men with Aspergers that the smile and personal attention of a stewardess on an aircraft are signs of courtesy, not indications of a desire for a relationship.

Despite the problems in relationship skills experienced by many individuals with Aspergers, some adults can progress along the relationship continuum and are able to experience romantic and subsequently intimate personal relationships, eventually becoming a lifelong partner. To achieve such a relationship, both partners initially would have noticed attractive qualities in the other person.

Do young men with Aspergers lack empathy, or do they simply experience it differently?

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Men and women seem to have differing ability and context as well as understanding when it comes to something like empathy and compassion. There is still a difference not only in the way boys and girls are socialized, what those social norms contain, but also in what society expects from boys versus girls. Females find ways to express love and caring in ways that perhaps many males don't.

In counseling Aspergers adults over the years, I find that Aspergers men have tremendous empathy for others. There is also a very profound sense of connectedness to humanity in its macrocosm that means they experience a lot of empathy and compassion for a lot of world events and things that they see on the news, for example, that aren't a part of their own life. However, a lot of this empathy that they have and feel isn't always expressed.

There are many feelings, such as love, empathy, compassion, and so forth that are compromised to varying degrees with Aspergers adults. This does mean they can't continue to learn ways to increase understanding these emotions and their expression.

Within the social impairment of Aspergers in terms of social-relating, does feeling or expressing empathy become more challenging or difficult for many with Aspergers? Yes. This has to do with the different ways that they process information. It has to do with the "normal" social context that most with Aspergers (even when they understand it to varying degrees) do not find it to be the way that they engage, the way that they would relate that would be first-nature to them.

I believe that most Aspies do feel empathy. I also believe that they want to experience empathy from others, but that often both are lost in terms of expression and reception to the different ways in which they think, process information, and to the different degrees to which they feel the need to actually "socialize". That does not a "lack" of empathy make. That makes for "difference."

Positive Reframing--

A young person with Aspergers doesn't really know why he behaves the way he does, so if you (the parent) claim that he is doing something for some reason ? and it's a good reason ? he is inclined to believe it.

For example, if he is angry or negative with you, and you respond with positive reframing, then he is likely to get confused. Here he is trying to "vent" ? and even wanting to get a negative reaction out of you ? but you are saying some nice things that he enjoys hearing! As a result of his confusion about what you are doing, he unknowingly becomes your "partner-in-problem-solving."

Here are some examples of reframes:

? Yelled ? because you wanted to make sure I heard you ? Got angry ? because you wanted to make a point ? Were sarcastic ? because you like to joke around ? Have difficulty listening ? because you have other things on your mind ? Lost your temper ? because you wanted to express your emotions ? Argued ? because you have your own opinion about it

By putting a positive spin on your older Aspergers child's behavior, you catch him "off guard" ? and

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