Aspergers: Different Levels of Severity

Question

As I read articles about Aspergers, I have to question if there are different levels of Aspergers? My son does not have extreme behavior however I also have to ask if some of the behavior training I have drilled into him is showing more now as he ages. Some of the stories that I read seem extreme. I can think of extreme behaviors that he has displayed and lack of reasoning skills that he has shown, social issues, but still I wonder if he was dx incorrectly or am I just grasping at straws?

Answer

Health care providers think of autism as a “spectrum” disorder, a group of disorders with similar features. One person may have mild symptoms, while another may have serious symptoms. But they both have an autism spectrum disorder. Different kids with an autism spectrum disorder can have very different symptoms.

Aspergers (high-functioning autism) can range from mild to severe. A child might have a few traits of Aspergers, or might have a large number of traits, and each of these traits can range from mild to severe. So, some children with Aspergers have only minor difficulties functioning in society while others need someone to help with most aspects of life.

Some children have all of the criteria for Aspergers that are quite severe and very noticeable, and others may not get diagnosed until they are a teenager (or even later) because they were thought of as just being shy or eccentric. Some adults with Aspergers can't get a job, can't live on their own, can't drive, have major marriage problems, and have very few friends. Others are married and have children, hold down employment, can drive, and have plenty of friends (but still have the social problems and obsessive interests/routines that are part of the disorder).

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book



 
COMMENTS:

•    Anonymous said… Everyone is different and has a different set of circumstances. Consider yourself lucky if your kid doesn't rage. I know my daughters rages are not just because of Aspergers, unfortunately the split between me and her dad has affected her negatively. Sometimes I think some of her rages stim from that and lack of control. She is a major control freak......
•    Anonymous said… I have 2 boys with it, 1 with the extreme rage and 1 not. Totally different behaviours and aspects of it. I beleive the younger 1 is because we didn't know what was going on with the older 1 and at the time we were told this is what we were looking at the youngest had started showing the smae traits. So the younger 1 had earlier intervention and help than the older 1.
•    Anonymous said… Many adults have Aspergers and they don't know it. And you would never know it. Its not about being "extreme".
•    Anonymous said… My 13 year old Aspie daughter doesnt get on at school,can hardly get her 2 go.She sits in her room,she used 2 go 2 judo twice a week but now doesnt go.Her anxiety is thru the roof alot of days.Ive tried 2 get her the help but mental health say she has 2 be 14 before certain organisations step in.
•    Anonymous said… My 9 year old aspie does not have any rage - he has infrequent meltdowns or gets overly rigid & emotional - but no rage. Every aspie, autistic, autism spectrum, sensory child - every child is different & unique.
•    Anonymous said… My son has definitely changed in his teens. He used to be crazy and funny (when he wasn't melting down or angry). Now he is super quiet and shuts down a lot. Closed off. He won't leave the house at all except for school. The social anxiety is more extreme.
•    Anonymous said… This article reminds me so much of my thoughts! It gets so tricky-! There are 3 kids one of which is a cousin that my son can make that connection with everyone else is like back ground noise to him- as if there not in his picture - just there- he operates in same room but not connecting- however while one on one play date s he thrives!! Leaving me thinking-- did they get this right! Could it be wrong! But then we go out to the world such as a Drs appt and I see his body language and demeanor- he can't stand to even be in same lobby with others of its close quarters- he will even take his blanket and cocoon hisself with it-- then it's like yep! They got it right! And also going into the classroom to just observe is so telling!! So so telling! He's in his world  🌎-- and will allow the one kid in-- I think tony Atwood's book- Guide to Asperger is best read I have found!! It's like a blue book to my son! I think they should mandatory every therapist, that is going to be giving therapy to these kids to read it 3 x!!! Lol!!! Then let's have a session!! I am so worried about his teen age years-- that will be the crucial part! Keeping him going to school , trying to interact will be so important-! This year it almost got to point of home school- I'm so glad we pushed through because he is so happy there now! He is still who he is but it's as if the others kids have accepted him but not only accepted it they help him! It was Beautiful how I saw them helping him! Wish I had it on video to share !! Kids can be just awesome!  ❤

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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...