Problems with Insurance Reimbursement

Question

My son has Aspergers, and I am having problems getting my insurer to pay for specialty medical treatments that should obviously be covered. Do you have any suggestion?

Answer

Unfortunately, this is not uncommon. I have found that parents with Aspergers (high functioning autistic) children not only have a tough enough time locating a good referral for either diagnosis or treatment of the disorder, but they also have problems with insurance reimbursement.

Sometimes, parents simply need to do some good old fashion “ranting and raving” to get things done – seriously! When parents are in HMO's and they are only offered low level assistance by therapists who don't know about Aspergers – it’s time to get tough.

Find out who in your area is an expert on Aspergers and demand that your insurer pay for that person (even if they are out of network). It’s up to YOU to make sure your insurers will pay! If you are in the U.S., ask your State Insurance Office to help you. Keep notes on all phone contacts with your insurer (always ask the name of the person you are talking to), and if you are getting nowhere, file a complaint with the State Insurance Office.

The Aspergers Comprehensive Handbook

The Best Books About Aspergers

Question

I’m a psychologist in the Chicago area. I’ve been getting more and more Aspergers clients over the last year, but am not well versed with this disorder or its treatment. Are there any books on this subject that you would recommend?

Answer

The following is an alphabetical list of “must have” books if you’re really serious about becoming an “expert” in the Aspergers field. These are all in my personal library:

1. An Asperger Marriage by Gisela Slater-Walker

2. Aquamarine Blue 5: Personal Stories of College Students With Autism by Dawn Prince-Hughes

3. Asperger Syndrome and Long-Term Relationships by Ashley Stanford, Liane Holliday Willey

4. Asperger Syndrome in the Family: Redefining Normal by Liane Holliday Willey

5. Aspergers in Love: Couple Relationships and Family Affairs by Maxine Aston

6. B. Smith Myles, K. Tapscott Cook, N. E. Miller, L. Rinner, L. A. Robbins, Asperger Syndrome and Sensory Issues: Practical Solutions for Making Sense of the World, (2000) Autism Asperger Publishing Co.

7. Biological Basis of Autism by William Shaw, Ph.D., available from Great Plains Laboratory (913) 341-8949

8. Brenda Smith Myles, Melissa L. Trautman, Ronda L. Schelvan, The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situaitons, Autism Asperger Publishing Company (2004)

9. Children with Starving Brains, by Jacquelyn McCandless, M.D.

10. Employment for Individuals With Asperger Syndrome or Non-Verbal Learning Disability: Stories and Strategies by Yvona Fast

11. Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence by Luke Jackson

12. G. Berard, Hearing Equals Behavior, (1993) Keats Publishing Inc., New Canaan, Connecticut

13. Gail Gillingham, Autism: Handle with Care! (1998, 3rd edition), Tacit Publications, Inc., Edmonton, Alberta, Canada

14. H. Irlen, Reading by the Colors: Overcoming Dyslexia and Other Reading Disabilities Through the Irlen Method, (1991) Avery Publishing Group, Inc., Garden City Park, NY.

15. How to Find Work That Works for People with Asperger Syndrome: The Ultimate Guide for Getting People With Asperger Syndrome into the Workplace (and Keeping Them There!) by Gail Hawkins

16. J. Dimitrius and M. Mazzarella, Reading People: How to Understand People and Predict Their Behavior—Anytime, Anyplace, (1999) Ballantine Publishing Group

17. J. L. Savner, and B. Smith Myles, Making Visual Supports Work in the Home and Community: Startegies for Individuals with Autism and Asperger Syndrome, (2000) Autism Asperger Publishing Co.

18. J. Newport and M. Newport, Autism-Asperger’s & Sexuality, (2002) Future Horizons

19. Jean Kearns Miller, editor, Women from Another Planet: Our Lives in the Universe of Autism,(2003) 1stBooks Library

20. Jeanette McAfee, Navingating the Social World: A Curriculum for Individuals with Asperger’s Syndrome, High Functioning Autism and Related Disorders, (2002) Future Horizons, Inc.

21. Jerry Newport, Your Life is Not a Label: A Guide to Living Fully with Autism and Asperger’s Syndrome for Parents, Professionals, and You!, Future Horizons, Inc.

22. K. Stewart, Helping a Child with Nonverbal Learning Disorder or Asperger’s Syndrome: A Parent’s Guide, (2002) New Harbinger Publications

23. L. Holliday Willey, Pretending to be Normal, (1999) Jessica Kingsley Publishers

24. Loving Mr. Spock: Understanding an Aloof Lover, by Barbara Jacobs

25. Rebekah Heinrichs, Perfect Targets: Asperger Syndrome and Bullying, (2003) Autism Asperger Publishing Co.

26. Right Address ... Wrong Planet: Children with Asperger Syndrome Becoming Adults by Gena Barnhill

27. Stephen M. Shore (editor), Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, (2004) Autism Asperger Publishing Co.

28. Stephen Shore, Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, (1961) Autism Asperger Publishing Co.

29. Succeeding in College With Asperger Syndrome by John Harpur, Maria Lawlor, Michael Fitzgerald

30. Temple Grandin & Kate Duffy, Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism, (2004) Autism Asgerger Publishing Co.

31. Temple Grandin, Thinking In Pictures: and Other Reports from My Life with Autism, (1996) Vintage Books

32. Teresa Bolick, Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World, (2001) Fair Winds Press, Gloucester, MA

33. The Other Half of Asperger Syndrome: A guide to an Intimate Relationship with a Partner who has Asperger Syndrome by Maxine C. Aston

34. Tony Attwood, Asperger’s Syndrome: A Guide for Parents and Professionals, (1998) Jessica Kingsley Publishers

The Aspergers Comprehensive Handbook

How To Write Social Stories

What is a Social Story?

A social story is a simple method that may be used at home, school, or in the community to teach or maintain social skills, daily living skills, or behavior management skills of kids with Aspergers and High Functioning Autism (HFA).

A social story addresses specific situations by teaching the child appropriate behaviors and responses (e.g., how to cope with changes in routine, how to get along with peers, how to work in the classroom) and provides (a) an explanation of detailed social information (e.g., guidelines for waiting a turn in conversation, sharing, or demonstrating good manners), and (b) desired responses instead of problem behaviors.

The purpose of a social story is to:

• address a wide variety of problem behaviors (i.e., aggression, fear, obsessions)
• break goals into easy steps
• correct child responses to a social situation in a nonthreatening manner
• describe social situations and appropriate responses
• help the child cope with both expected and unexpected transitions
• personalize instruction
• teach routines for better retention and generalization

How to Write a Social Story—

1. Identify the target behavior you wish change or maintain. Focus on writing the social story about the behavior you want the Aspergers or HFA child to learn or increase (e.g., Kyle’s obsession is “trains.” He focuses on trains to the exclusion of doing homework, and his grades are suffering as a result).

2. Define the target behavior and collect data. To make sure that the social story is effective, parents and the child need to have an identical understanding of what behavior is being targeted. This means that specific descriptive and measurable information must be noted (e.g., to measure the number of times Kyle engages in inappropriate conversations about trains, the parent puts a tally mark for each time that he initiates a conversation about trains).

3. To develop an effective social story, (a) gather information about the child’s interests, abilities, impairments, and motivating factors, (b) observe situations that often present problem behaviors, (c) ask the child for his perspective of the specific target behavior, and (d) determine the topics for the social story.

Example questions to determine the target behavior include:

1. Does it appear as if the child enjoys performing the behavior?
2. Does the behavior ever occur following a request to perform a difficult task?
3. Does the behavior ever occur when the child wants to get a toy, food, or activity that he has been told he can’t have?
4. Does the behavior occur whenever the adult stops paying attention to the child?
5. Does the behavior occur when the child is calm and unaware of anything else going on around him?
6. Would the behavior occur repeatedly in the same way for very long periods of time, if no one was around?

Formula for Developing a Social Story—

The three types of sentences in a social story are:

1. Descriptive – tells where situations occur, who is involved, what they are doing, and why (e.g., "During Homework Time, me and my brother are in our separate bedrooms sitting at our desks. We are either reading or writing so we can get our assignments done before T.V. Time).

2. Perspective – describes the reactions and feelings of the child and of others (e.g., "When I talk about trains instead of doing homework, it makes me get poor grades in Math and Spelling, which makes my mom and the teacher unhappy").

3. Directive – tells the child what to do (e.g., "When I want to talk to my mom or brother about trains, I will have to wait until Free Time").

Photographs, hand-drawn illustrations, or pictorial icons can help aid in the child's understanding of the social story (although some children may be distracted by pictures or may have difficulty generalizing from a picture).

Social stories can be written in book format, bound or placed in a notebook. However, they can also be written on poster board, cardboard, laminated paper, or on a chalk-board.

Using the Social Story in a Real Life Situation—

1. Read the story to the child in a location with few distractions.

2. Briefly explain the importance of a social story (e.g., Discuss with Kyle the importance of completing homework).

3. Read through the story once or twice and, when necessary, model the desired behavior (e.g., After reading with Kyle his social story about waiting for Free Time to talk about trains, the parent pretends to be the brother who comes into Kyle’s room. Kyle is encouraged to tell his brother that he is doing homework and will play later).

4. If needed, create a schedule for the child in which the story is read at the same time and in the same way each time.

5. If needed, read the story just prior to a situation in which the problem behavior is likely to occur (e.g., If Kyle’s problem with talking about trains occurs mainly during Homework Time, it may be helpful to read the social story right before Homework Time each day).

6. Consider providing opportunities for the child to read the social story to other children or adults.

How do you know if the Social Story is working?

• Observe the child’s behavior and comments when the story is presented.
• Conduct ongoing data collection on the child’s behavior.
• Compare your observations to those of others.
• Collect data now that the story has been implemented and compare the data to the previous data.
• Determine if the child has acquired, generalized, and maintained the new behavior.

What should you do if the Social Story is NOT working?

If the child has not responded to the social story after an appropriate length of time (varies by target behavior and the time each child requires to learn a new skill), review the social story and how it has been used. If modifications are needed, change only one aspect of the social story at a time (e.g., Change when the story is read. Do not change the words of the story or who reads the story. This helps determine what aspect of the social story works and does not work).

What should you do if the Social Story IS working?

• Let the social story fade away slowly by extending the time between readings or having the child read the story independently.
• Work with the child to identify new social skills to address.
• Create new social stories that address other targeted behaviors.
• Help the child continue to generalize new behaviors (e.g., The parent could help Kyle generalize “staying focused on homework” rather than the “train obsession” in situations outside of the home, such as school or Boy Scouts).
• Reintroduce the previous story as needed.

Summary—

A social story helps children with Aspergers and HFA acquire, generalize, and maintain social skills that make them more successful at home, school, and the community.

1. Identify the target behavior.

2. Write the social story taking care that the vocabulary matches the child's age, reading, and functioning level. If possible, write the story with the child.

3. Include any combination of descriptive, perspective, directive, or control sentences.

4. If needed, use pictures, photographs, or icons to aid comprehension.

5. Construct the social story out of materials appropriate for the child’s developmental level using cardboard, poster board, laminated pages, etc.

6. Provide an appropriate routine for the social story to be read.

7. If the child does not appear to be responding to the social story, adjust the content of the story and/or the child's access to the social story.

8. Fade the social story when the desired outcome is maintained and reintroduce if needed (some children may continue to rely on a social story for an extended period of time).

Examples of Social Stories:

The Lunch Room

My school has many rooms. One room is called the lunch room. Usually the children eat lunch in the lunch room. The children hear the lunch bell. The children know the lunch bell tells them to line up at the door. We have a line to be fair to those who have waited the longest. As each person arrives they join the end of the line. When I arrive I will try to join the end of the line. The children are hungry. They want to eat. I will try to stand quietly in the lunch line until it is my turn to buy my lunch. Lunch lines and turtles are both very slow. Sometimes they stop; sometimes they go. My teacher will be pleased that I have waited quietly.

Standing Too Close

Sometimes I talk to the other children in my class. The other children don't like when I stand very close to them. When I stand too closely, it makes my friends feel crowded. If I stand too close, other children sometimes get mad at me. I can back up and stand three feet away from my friends when we talk. It makes my friends happy when I stand three feet away when we talk.

Don't have time to write a social story?  No problem!  We have some for you here in video format. Just sit with your child at the computer and watch them together.

==> Click here for the videos...

Aspergers Adults and Fulfilling Relationships

Question

I’m a 23-year-old male with Aspergers. I would like to date, but am having great difficulty in finding a girlfriend. I can even see myself getting married someday if I find someone I’m compatible with. Any suggestions?

Answer

Some adults with Aspergers (high functioning autism) are married or in long-term relationships. Some are not. Often times, it is only when Aspergers parents have kids that they recognize their own Aspergers traits. Also, Aspergers adults tend to have “alternative lifestyles” in statistically greater numbers than the general population. Some Aspergers adults do not feel particularly attached to their sexuality (i.e., they don’t identify with a particular sex or seek relationships with a particular sex). Other Aspergers adults simply avoid pursuing relationships (other than friendships). "Aspies" should not feel pressured to act outside of what they are comfortable with when it comes to developing relationships with others.

Relationship difficulties are not something unique to those with Aspergers. Non-Aspergers individuals (i.e., neurotypicals) have their own share of relationship difficulties. All relationships have stages. The stages in a relationship are:

1. coming together
2. staying together
3. moving apart

Coming together is a 6-step process:

1. initiating contact
2. discovery of common interests
3. intensifying your interest and involvement
4. integrating this person into your life’s activities
5. bonding or committing to the relationship (usually leading to marriage if the interest in the relationship is sexual)

Staying together is a long-term situation that requires effort from both partners to keep the relationship going. There are nine characteristics that long-term relationships often have, none of which are always present to the same degree:

1. amusement (i.e., making the relationship fun and enjoyable)
2. affection (i.e., pleasure in being together)
3. commitment equity (i.e., equal dedication to the relationship)
4. fidelity equity (i.e., faithfulness to each other)
5. contracting (i.e., fulfilling any agreements made to each other)
6. a “two-some” mentality (i.e., relying on each other as partners)
7. recognition (i.e., publicly making others aware of your commitment to each other)
8. frankness (i.e., revealing your inner self to each other)
9. averaging (i.e., good and bad times should average out)

It is possible for a relationship to come apart at almost any stage. Under normal conditions, relationships come apart in five steps:

1. differentiating (i.e., disagreements and differences become the focus of attention)
2. circumscribing (i.e., talk diminishes with less revealing of self and fewer commitments to each other)
3. stagnation (i.e., relationship loses its life and partners move apart physically)
4. avoiding (i.e., partners stop seeing each other)
5. termination (i.e., the relationship ends)

Communication and attitude are always thought of as a key to successful relationships. This is where the differences in how Aspies and non-Aspies perceive similar experiences can cause problems in relationships. Non-Aspies tend to value the following attitudes in a relationship:

1. achieving an understanding and appreciation of each other
2. being able to discuss conflicts, expectations, and anxieties that bother each other
3. being committed
4. being empathic
5. being honest and open about ones feelings
6. having a desire for the relationship to continue
7. listening non-judgmentally
8. make compromises when problems occur
9. seeing the world through the other person’s perspective
10. sharing responsibilities
11. talking “together” rather that “at” one another
12. trying to understand the other person in the way they perceive themselves

It is a common (but false) perception on the part of many people without Aspergers that Aspies lack these abilities. It is extremely difficult for anyone – with or without Aspergers – to understand and perceive what one has never experienced. Because of differences in the way that our brains process and respond to experiences, non-Aspies have just as much difficulty understanding and appreciating the Aspie’s perspective as the Aspie has understanding and appreciating the non-Aspie’s perspective. That doesn’t mean that both sides can’t learn to respect those differences and even understand them somewhat on an intellectual level. Communication becomes the most important factor in helping each other to understand and appreciate these differences.

People without Aspergers learn about and experience social interactions on a non-thinking level. To articulate how and what they know or feel on a thinking level is not something they often need to do – or know how to do – with other “normal” people. They simply “understand” because they tend to perceive these experiences in a similar fashion. Conversely, people with Aspergers tend to process a lot of input on an intellectual level because it is harder for them to pick up multiple pieces of information and process them quickly on a non-thinking level.

(An interesting side note: Even though the mental effort of verbal communication can be very stressful for people with Aspergers, they are the ones who are expected to “explain” their differences to non-Aspies since non-Aspies see themselves as “normal” and therefore consider themselves easy to understand.)

Nonetheless, both Aspies and non-Aspies can develop meaningful and fulfilling relationships with one another. It requires that both parties have a strong desire to make the relationship work and to work hard at communicating their different perspectives. Both parties should have a willingness to communicate in a non-judgmental way, which is essential to the understanding of, and an increased appreciation for, the differences that will exist between the two parties. All relationships, to be successful in the long-term, require a commitment to compromise and sharing, but having Aspergers does not lessen the chances of having such a relationship if this is truly what the Aspie wants.

Living With Aspergers: Help for Couples

COMMENTS:

•    Anonymous said… 32, aspy, and divorced. Now floundering in the dating scene again. It's hard. Especially after a nearly 10 year relationship. I guess the hardest part is making myself available again, but being in a new town and not knowing anyone adds another level of difficulty to something that is already hard for me. 
•    Anonymous said… Dont give up hope! Its not an easy journey, but when you find the person willing to share it with you, its worth the wait. Just be patient!
•    Anonymous said… I know it sounds absurd but there IS a girl out there who will think your quirks are adorable and be anxious to deal with them in a way that will make you feel like a million bucks! Just do NOT be in a hurry. It took 44 years to find mine.
•    Anonymous said… It helps if you can find someone who shares your "special interest." Whatever it is that you're super into, try to find someone else into it too. The bond over the shared interest will help smooth out the other areas of the relationship that will likely be bumpy.
•    Anonymous said… Just be yourself. I'm not dating yet because I am concentrating on school. Still, there are a lot of people who complement me for my kindness and smart ideas. They have said that I'd make any woman happy because of how I am as a human being.
•    Anonymous said… My aspi son is now 28. He has been with the same girl for 8 years. They now have a beautiful baby girl. I am a 60 yr old female aspi, not diagnosed till recently. 3 marriages and X boyfriends later. My advice would be to forget the end goal and enjoy the journey. Expect nothing and then everything becomes a happy bonus. I am back dating again and am much more relaxed about it. X

Post your comment below…

How Aspergers Teens Can Make Friends

Question

I’m a high school student with Aspergers. I want to have some friends, but can’t seem to find any. It’s like they don’t want anything to do with me. How can I make at least a few friends?

Answer

Friendships are usually built on one or more things of shared interest between two individuals. Friends share their thoughts and feelings as well as experiences. Teenagers with Aspergers and High-Functioning Autism tend to be very open and honest and willing to share themselves with others, which are traits that friends will value. However, some peers may not value this trait. They may not be ready to be open and honest and share personal information about themselves with you, so it makes them feel uncomfortable when you offer these things to them.

Some non-Aspergers teens like to take the development of friendships slowly. When someone asks you questions about yourself (e.g., where you were born, what school do you attend, what do you like to do), they are indicating that they have a possible interest in becoming your buddy. That doesn’t mean they will become your buddy, only that they are interested in finding out if you both share enough interests to possibly become buddies.

On the other hand, some teens without Aspergers can be very open to making friends quickly. If someone wants to be your buddy quickly, and then asks you to do something for them (e.g., give them money, do something crazy, hurt someone), be aware that true buddies don’t do that! True friends help you to feel good about yourself and protect you from doing things that are not in your best interest, or in the best interest of others.

Teens with Aspergers tend to be very loyal to their friends. However, their loyalty can be abused by those with various social weaknesses (e.g., greed, jealousy, low self-esteem). It is always a good idea to pay attention to your “gut.” If you feel uncomfortable about something, even if you can’t identify what it is, it is best to seek advice from someone you do trust who understands how some people can take advantage of others.

Many Aspergers teens have particularly strong interests in certain areas. Unfortunately, very few people around them may share that interest. This makes it harder for the Aspergers teen to find friends. Therefore, look for friends at clubs where other teens with your special interest are likely to gather. Some Aspergers teens recognize that having a lot of buddies is not that important to them. Other Aspergers teens blame themselves or think badly about themselves if they don’t have friends or make friends easily.

Making friends has less to do with whether people like you than it does with whether you have interests or experiences that are similar to theirs AND whether you are also willing to share in the interests they have that are different from your own. It is easy to lose potential friends if you share more than what the other person wants to receive, or don’t give the other person equal time to share their interests with you. True buddies will stick up for each other in front of others, answer questions honestly, help each other when there is a need, and will enjoy just spending time together. Most people only have a few friends that meet this definition of a close buddy. These are the best buddies to have and to seek.

Another reason that Aspergers teens may have a more difficult time making friends is because their sensory processing and body movements are different from those without Aspergers. Friendly pats on the back and reaching out to touch your arm are common ways for non-Aspergers people to “connect” with each other through the sense of touch. If touch is perceived as uncomfortable or even threatening, your reaction to their well-intentioned effort to relate to you is not going to be easily understood. This is where Aspergers teens need to self-advocate and to let others know what makes us uncomfortable. Most people without Aspergers ARE willing to respect these differences, IF they know about them.

For those who struggle with verbal communication, a card that explains what you need can be carried in your wallet or purse and shared with others as you choose. The “down side” is, because it is hard for people without Aspergers to relate to these differences in perception, it may limit how many potential friends will be willing to work that hard to become a close buddy. Aspergers teens often find it easier to socialize and become buddies with other “Aspies” simply because they understand each other’s way of thinking and perceiving.

“Missed” communication can also make it harder for Aspergers teens to make and keep friends. Their more limited body movements can be misread by others who regularly look for “body language” cues when communicating. Aspergers teens also tend to find it difficult to attend to all the body language cues that others give. Thus, they may misread the “intended” messages if all they are paying attention to are the words others use.

Understanding the social rules that non-Aspergers people follow can also help in making and keeping friends. Some typical social rules that Aspergers teens tend to break (that others find offensive, but won’t tell you about to avoid hurting your feelings) are:

• appearing desperate or too eager to establish a close relationship with someone you don’t know really well (which may be a dangerous thing for you because this is the type of behavior that people who will abuse you look for)
• asking others about their current relationships (unless they bring it up first)
• dressing too fancy or too casually for the situation (e.g., wearing too much make-up or seductive clothes to work or a picnic, wearing jeans to a job interview, etc.)
• poor grooming habits (e.g., not brushing your teeth, not bathing or washing your hair, not wearing clean clothes, not wearing deodorant, etc.)
• telling people things about yourself that are considered “private” (e.g., that you don’t have any friends, you’ve never had sex, etc.)

Even though your sensory processing differences may be the reason for your grooming habits or clothes choices, unless you take the time to explain these differences to others, they will judge you based on your appearance. That doesn’t mean you can’t find ways to compromise (e.g., adding a jacket to dress up blue jeans). Clothes that are clean and unwrinkled are more important than being “in fashion.” You can accomplish a “snug-fit” that some Aspies seem to prefer by wearing biking shorts or a wet suit under your clothes rather than overly tight fitting clothes that might be viewed as “suggestive.”

==> Discipline for Defiant Aspergers & High-Functioning Autistic Teens