Autism Life Skills: 10 Essential Abilities for Children with ASD

August 17, 2011

By Chantal Sicile-Kira      Editorial Note: This article originally appeared in Advocate Magazine in 2008

 

Teacher: “What are your greatest dreams about your future?”

Jeremy: “I want to have my own house with roommates, good friends,

a fun job and be learning.”

 

Teacher: “What are your greatest fears about your future?”

Jeremy: “That I will not have enough money.”

 

Teacher: “What barriers might get in the way of accomplishing your goals?”

Jeremy: “You know I need good helpers. I need people that respect my intelligence.”

-Interview with Jeremy Sicile-Kira

Transition Year 2007-08

With two teenagers who will soon be out of school, there has been much reflection and soul searching taking place in my home lately as to whether or not we’ve made the right decisions as parents over the years. Rebecca, our  neurotypical teenager, has just started driving and is becoming more independent. In hindsight, there is not much I would do differently if we had to start raising her all over again.

My thoughts concerning Jeremy, our 19-year-old son with autism, are somewhat  different. Those who have seen him on the MTV True Life segment “I Have Autism” will remember his can-do spirit and his determination to connect with other people, but also how challenged he is by his autism. Obviously, there are many more options available to help people like Jeremy today than when he was a baby. Over the last few years, as we considered how to best prepare Jeremy for the adult life he envisioned, I wondered what we could have or should have done differently when he was younger.

This led me to think: What would today’s adults on the autism spectrum point to as the most  important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.

The result of these conversations and e-mails became the basis of my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin, October 2008). Although some areas discussed seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all.

Sensory Processing

Making sense of the world is what most adults conveyed to me as the most frustrating area they struggled with as children, and that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. Babies and toddlers learn about the world around them through their senses. If these are not working properly and are not in synch, they acquire a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can impede learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated and far reaching. For example, Brian King, a licensed clinical social worker who has Asperger’s, explains that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Donna Williams, Ph.D., bestselling author and self-described “Artie Autie,” had extreme sensory processing challenges as a child and still has some, but to a lesser degree. Donna talks about feeling a sensation in her stomach area, but not knowing if it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas. Setting their cell phones to ring every two hours to  prompt them to use the restroom helps them to avoid embarrassing situations.

Many adults found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

The most helpful strategy was knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload), undergoing auditory and vision therapy, as well as desensitization techniques.

Communication

The ability to communicate was the second most important area of need cited by adults. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective. Sue Rubin, writer and star of the documentary “Autism is a World,” is a non-verbal autistic college student and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased.

Those with Asperger’s and others on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped Michael become the accomplished speaker he is today.

Safety

Many on the spectrum had strong feelings about the issue of safety. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years, and shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had.  Practically all recounted instances of being bullied. Some said they had been sexually or physically abused, though some did not even realize it at the time. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied. For example, Michael John Carley, Executive Director of GRASP and author of Asperger’s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom.

A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and  providing him/her with a safe place and safe person to go to at school would have helped as well. Teaching them the “hidden curriculum,” so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey.

Self-Esteem

Confidence in one’s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good self-esteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them. Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence.

Pursuing Interests

This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, she had no idea that she was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to her.

As students, some of these adults were discouraged from following their obsessive  (positive translation: passionate) interest. Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store.

Self-Regulation

Respondents believed this is a necessary skill for taking part in community life. Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response. Dena Gassner, MSW, who was diagnosed as an adult, believes it is necessary for children to be able to identify their “triggers” and that parents and educators should affirm to the child that whatever he or she is feeling is important. Even if it does not make sense to the adult, whatever the child is feeling is true for him or her. Various methods can be used to help them become more self-aware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break. As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.

Independence

Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realize and accept that they will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I’d still be discussing certain self-care issues when my son was old enough to vote. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters (“If they haven’t learned by now….”).

When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning  (being able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.

Social Relationships

Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly non-verbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People). However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are non-verbal.

Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills—how to ask for help, how to approach a store clerk, how to network as they get older. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance—what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.

Self-Advocacy

Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.

Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell,  was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.

Earning a Living

This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. The life skills discussed earlier in this article impact tremendously on a person’s ability to find, get and keep a job. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society.

Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Asperger’s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.  My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customized employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some.

In retrospect, there are different choices I could have made  in raising and educating Jeremy these past 19 years. However, after conversations and e-mails with many  different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.

 

Life Skill – Toilet training (For Children with Difficulties)

August 14, 2011

By Prof Eric Lim, Kits4Kids Foundation, August, 2009

Toilet training is teaching an entire new skill. Teaching new skills to children with autism spectrum disorders works best when the steps to the task are organized into simple pieces. Teaching must also be consistent at all times and become predictable to the child in terms of rewards and consequences. In order for toilet training to be successful, the child must move from depending on reminders (timed trips to the bathroom) to recognizing the signs of a full bladder and taking the necessary actions him/herself.

As parents we look forward to that time when our child is finally toilet trained. We expect our child to learn to use the toilet as part of the growing up process. Not every child is alike, some children are difficult to train and may make toilet training harder on the parent. Learning to use the toilet is part of socialization. Children become interested in training when they become aware that other children and adults use the toilet. They assume that using the toilet is part of being considered a “big boy or girl.”

Most children enjoy the recognition and gratification they receive from adults when using the toilet as well as the rewards that come their way. However, young children with autism have trouble applying the same social interaction reason to toileting. They also are being asked to change set routines and rituals and they also may not be aware of or able to control their bodies just yet.

Signs of Readiness

For children on the autistic spectrum, it’s recommended to look for signs of readiness. Signs may include the following:

• Awareness that he or she has wet or soiled, a desire to remove the wet or soiled diaper (pulling at it, taking it off, digging in it, and or vocalizing displeasure.
• Getting a clean diaper, or taking you to the bathroom
• Ability to imitate actions (sitting on the toilet)
• Responds favorably to some form of positive reinforcement (a learned behavior increases after you reward it with something the child likes)
• Stays dry/clean most nights

When to start toilet training a child with autism:

• Many children with autism train later than the average age. Many succeed at urine training before bowel training. Many take longer to train, some reports suggest up to a year to become dry and two years to become clean.

• Start toilet training when you can be positive and the child is able to: sit comfortably on a potty chair or toilet for a couple of minutes, stay dry for at least 60 minutes, is aware of being wet or dirty, is showing interest in other people going to the toilet, showing some signs of cause and effect, and is willing to cooperate. Be prepared for it may be a long learning process.

Communication Problems with Toilet Training

For children with a communication deficiency visual learning may be an appropriate way to teach toileting skill. Does the child understand language? Does he or she understand “potty”, “diaper”, “dry pants”, “toilet”, “bathroom”, or any other words, signs, or pictures/symbols that may convey the idea of toileting. Children with Autism may have difficulty understanding and associating words with actions and most will at least need more time to process what you say. Can the child express the urge or need to use the toilet? Expressive language is almost always a problem for children with an autistic disorder. It will be important to be able to read their cues and/or teach a way to express the need or urge to use
the toilet.

Special consideration for children with autism:

• A child with autism may not be able to communicate a need to go to the bathroom, therefore body signals from the child, routines, and visuals might be significant aides.

• The child with autism may learn to use the toilet at home and be unable to adapt to a new situation easily.

• A child with autism may have sensory difficulties such as discomfort by the hard toilet seat, being afraid of water splashing, or want to play in or watch the swirling toilet water.

• In public bathrooms children with autism sometimes fear the hand dryers, have problems with the doors, the way the toilet flushes, or any number of challenges.

• Having a bowel movement is often harder and occurs less often. Some children go off alone and squat, some insist on wearing the pull-up or diaper to make a bowel movement, some fear that it hurts, some smear feces, and others want to be clean so much that they react to getting anything dirty on them.

• Rule out any medical problems and account for fears that may have developed due to pain from constipation or urinary tract infections in the past.

Before you begin toileting make sure your child does not have a medical problem which would interfere with making toilet training a success. This can be ruled out by the family physician after a routine physical. Contact your physician if you notice any unusual signs like too much or too little urination, painful urination, urinates frequently or unable to hold urine. The same applies to concerns with stool. Children with Autism have a higher than expected rate of bowel problems (constipation or loose stools or both) and require extra care if this is the case.

Making Toilet Training a Success

• Before starting, keep a record for a few days, charting every 20 – 30 minutes whether your child is dry, wet, or dirty. Some diapers have a strip that changes color to make this easier. Chart periodically, maybe once a day each week after starting training to keep track of progress, problems, and tendencies.

• When you start training, prepare the environment with the needed equipment and remove extra distractions.

• Plan a schedule that will match the report you gathered. If you child usually stays dry for an hour, anticipate to take him/her to the bathroom about 10 minutes before. Try to match the schedule to the natural cycles of the day.

• Plan the routine that you will have your child follow and make a picture chart of that routine so that your child and everyone who helps him can follow it. Change the cue level by decreasing examples as the child achieves the skill.

• Watch for signs of readiness such as when your charting shows being dry for an hour, your child indicates in some way that she is wetting or soiling diapers, indicates in some way that she has soiled or is wet, regular bowel movements, or interest in others going toilet.

• Keep positive, praise attempts, praise being dry and clean, use reinforcement and give your child time.

• When your child has some success with understanding toileting help him/ her learn to indicate that they are going to the toilet with a sign, word, or picture or several of these. Children today often use potty, pee and poop, but signing toilet may work or a picture of the toilet may be helpful. Visual cues as part of your routine helps the child tell you when they have to go potty.

Visual and Verbal Cues in Toilet Training

• Give a visual and verbal cue –such as an auditory giving the child a buzzer or bell. Decide what verbal cue you will use such as go potty, go pee, or go to the bathroom. If you use a signs, pair it with the verbal cues.

• Enter the bathroom with the cue needed (verbal, light touches, taking the child’s hand, or more physical assist).

• Pull pants down to ankles with cue

• Sit down with cue

• Pee or poop or both with cues

• Get toilet tissue and wipe with cue

• Stand up with cue

• Wipe, if needed, and throw tissue in toilet with cue

• Pull up pants with cue

• Flush toilet with cue

• Turn on water and wash hands with cue

• Turn off water and dry hands with cue

Use visuals: For many children, having a picture of a toilet or potty chair as a cue to go helps. You might also make a picture schedule to sequence the major activities of the day adding the toilet pictures before or after these. Children have learned to go on their own in this way. The pictures can be laminated and put on with Velcro or inserted in plastic sleeves so you or your child can take them off or change the order. There are also videotapes about using the potty that some children with autism have reacted well to. Other parents have made videos for their child to watch, some have paired music with the pictures. Model for you child, use books and pictures sequences about going to the toilet. Visuals
help your child know what to do, remember what to do, and learn from the sequence.

Use imitation: Imitation is a type of visual. Many children with autism are delayed in their imitation abilities, but many do watch carefully to what is going on around them even if they don’t seem to immediately imitate. Watching someone close to their size use the potty may be useful, but it is helpful for them to see that going to the bathroom is something everyone does. Some children might respond to the use of a doll to go through the steps.

Teach privacy and modesty: Most young children undress anywhere and don’t care who sees them go potty. However, as they are approaching four years of age, they often begin to want more privacy. Children’s needs must be considered and children have to be taught what society expects. Consider teaching your child to undo and pull down pants only in the bathroom as well as pulling up and fastening pants before leaving the bathroom. Once your child is toilet trained teach him to close the door. Also you might want to consider teaching your child when and where he must
be clothed or covered and not naked. Teach them to ask for ask for help with bathing.

Use words that are appropriate: Some children with autism are constant with the words they heard when very young and will not change to more appropriate words later. However, if you are aware of the need to be age appropriate it usually works to use the words that everyone else of the same age is using.

Ideas for Specific Problems That May Be Encountered:

• Resists sitting or doesn’t sit and relax long enough: Encourage your child to sit with his/her clothes on. Make sure the seat of the potty chair or the toilet is comfortable to your child, maybe it needs to be softer, maybe lined with a diaper, maybe warmer, or maybe your child’s feet need to be more stable. Some children may need to have the hole on the toilet smaller and experimenting with various sizes of seats or even covering the toilet with a towel or cardboard may help. Give your child a reason to sit such as his special reward that he/she gets while sitting. Use modeling by sitting together or having a doll or favorite stuffed animal sit. Give the child a visual or auditory cue about how long to sit by a visual timer or the length of a song. Help your child relax while sitting by providing support for feet and body where needed and rubbing your child’s legs. Sometimes children are so tense that they can’t relax and go.

• Afraid of flushing or excessively interested in flushing: Encourage your child to play in water that swirls in other places than the bathroom and at appropriate times. Always let your child know when you are going to flush the toilet when he/she is in the bathroom. Gradually bring your child closer to the toilet by providing a place for the child to stand while you are flushing. When your child is ready allow him/her to flush and either run or stay and watch. Establish a rule that you only flush once then you are all done.

• Afraid of public bathrooms: stalls, hand dryers, different sinks, toilets that flush automatically: At first, it may be necessary to be aware of the public bathrooms you may frequent to know what is likely to cause your child problems. Some of these can be avoided like being far away from the dryer and not walking under it and practicing with soap dispensers and sinks that go on by themselves in a fun way. Protect your child from toilets that automatically flush since some splash a lot. The more you know about the quirks of the public restroom the more you can prepare you child. The handicap stalls are wider and more accessible many a sink next to the toilet.

• Playing in water or with toilet paper: Take the toilet paper off the roll and put it up until your child can master the use of it. Put safety catches on toilets until your child can understand that toilets are not places to play. Allow lots of water play in appropriate places and even swirling water to watch such as in “tornado bottles”. Lower water toilets aren’t as much of a temptation while sitting. Use tissues that are folded or pre-measured, a box of wipes, and folded toilet paper are helpful.

• Resists being cleaned or not wanting to be dirty: Sometimes smearing of feces begins by the child trying to clean himself. They may try to clean up then make a mess. For whatever reasons your child may be having trouble in this area it is wise to stay as calm as you can. Establish a clean up routine that is not especially rewarding, but is comfortable and quick. Make sure the wipes are big enough and comfortable enough for your child including temperature and texture. If your child gets some feces on his hand and is distraught help the child wipe it as soon as possible. Show the child that they can wash their hands clean with soap and water. Sometimes as children with autism grow older they become upset when something happens like a toilet overflowing or they get their hands dirty and react
out of proportion, so we want to assure them early on that this can be fixed quite easily.

• Fear of having bowel movements or constipation: This is a common problem for many children with autism at some time in their childhood. It may be contributed to by diet, not sitting long enough, not being able to relax, their activity level, or various other factors. It is helpful to help a child recognize that the grunting and squatting he/she is doing helps make a bowel movement and that is good. Many children go and hide in a corner to do their poop and resist a change. Help them move closer to the bathroom and perhaps identify where to squat by using a plastic mat as the spot. Gradually influence the action to the potty or toilet over time the child associates the grunts and pushes as signals.
A child may have to go in the diaper even while sitting for a while so try a diaper-lined toilet seat. If a child experiences constipation on a regular basis bowel movements may be uncomfortable and you may need to seek advice from you doctor.

• Trouble in standing while urinating: When your son is sitting to urinate and completely toilet trained or when he shows an interest in standing he may need help. A visual chart of how boys use the bathroom may be helpful. For example action pictures of a boy putting the seat up, standing while urinating and aiming in into the toilet. Sometimes boys do not want to touch their penis because they may have been told not to touch on some occasion. A male in the family may need to demonstrate how to point and aim. Something may be used for a target like a floating paper, a Cheerio, or colored toilet water.

• Regression in toileting: Sometimes a child who is fully toilet trained will begin to have many accidents. Evaluate changes that have occurred and what information or additional supports may help your child feel comfortable again. Some reasons regression may occur are after an illness, after a parent has been away, after a move, after starting school, after a baby has been born, or when going to the bathroom has been painful. Your child may be in a situation where he doesn’t have the skills to tell someone he needs to go and holds it too long. His supports may not be in place. Sometimes at school there is something about the environment or the schedule that is causing problems for your child.
Go back to all the original supports that worked and put them back into your child’s life while reassuring your child that he/she can and will succeed.

Consistency in Toilet Training

Your child can be toilet trained. However, training your child with autism will likely take more planning, attention to detail, and consistency than training typical children. (Remember that all children with autism are different and some are easy to train.) You have to organize the sequence and provide a schedule and consistency until your child understands how all this relates to his body functions. Keep your expectations realistic and reinforce your child for trying as well as for success, always reassuring the child that he/she will succeed and there is plenty of time to try, and be persistent.

 

Travel Tips for Families with an Individual on the Autism Spectrum

March 22, 2011

by Chantal Sicile-Kira

Transitions are usually difficult for many on the spectrum, and traveling is really a series of transitions. Preparing the person – child, teenager or adult – as much as possible will make any trip a more enjoyable experience for all involved. Some advance planning of specific steps of the trip can be made ahead of time. Below are tips for both preparing the person (1), and preparing the environment for a better travel experience (2).

1. Preparing the Person

Leaving the security of home for a new place can be off putting for individuals with autism. How you prepare the person on the spectrum depends on his or her age and ability level. Here are some tips:

  • Think of the individual’s daily routine and the items he or she likes or needs and bring them along to make him feel more at home. Bring whatever foods and drinks will keep him happy on the trip, especially if there are dietary restrictions.
  • Buy some small, inexpensive toys or books that he or she can play with during the journey and that if you lose it will not be the end of the world. If he only plays with one favorite item, try to find a duplicate and see if you can “break it in” before the trip.
  • Do not wash any items (including plush toys) before the trip as the individual may feel comfort in the “home” smell of his cherished item.
  • Put up a monthly calendar with the departure date clearly marked, and have the person check off every day until departure. Bring the calendar with you and mark off number of days in one place or on the trip, always having the return date indicated.
  • Put together a picture and word “travel book” of what means of transport you are going to be using to, who you are going to see, where you will sleep, and what you will do or see at your destination. Go over this with the person, like you would a storybook as often as you like in preparation for the trip. Using a three-ring binder is best, as you can add extra pages or insert the calendar mentioned above for use on the trip.
  • Put together a picture or word schedule of the actual journey to take with you on your trip. Add extra pages to the travel book. Add Velcro and attach pictures or words in order of the travel sequence. For example, a picture to represent the car ride to the airport, going through security, getting on the airplane, etc. For car trips, pictures representing different stops on the trip and number of miles to be driven can be used. Add an empty envelope to add the “done” pictures when you have finished one step of the journey.
  • Taking a short trip before attempting long voyages, if possible, is recommended. This will help the person get used to traveling and give you the opportunity to see plan ahead for possible areas of difficulty. Also, if you use the travel book system, it will help the person make a connection between the travel book and any impending travel in the future.
  • Travel environments such as airports and train stations are areas that involve lots of waiting. Teaching the individual the “waiting” skill before traveling (if he or she does not already have it) will make your life and theirs much easier. Make or find a picture or icon that will represent “waiting” to your child, such as a line drawing of a “stick” person sitting in a chair, with the face of a clock next to it. Write “waiting” clearly on the card. Glue to cardboard, laminate it and place a piece of Velcro somewhere on it. Next, make sure you have picture of whatever items your child usually requests or wants immediately (favorite food, toy, ride in the car) backed with Velcro. The next time he or she requests the item, place the corresponding item on the Velcro strip on the Waiting board and say “We’re Waiting” and set a timer for how long you think the person can wait – for some this will be 10 seconds, for others a few minutes. When the timer goes off, immediately give the requested item, and say, “Thank you for waiting.” Do this, lengthening the amount of time the person needs to wait. Eventually, he or she will get the concept.

2. Preparing the Environment

Some preparations can be made ahead of time for the different environments and means of transport you will be using. Most people and companies in the field of tourism are willing to help to ensure a positive environment for all their customers and guests. Here are some tips:

  • When staying in a hotel, it is a good idea to call ahead and ask for a quiet room. You may wish to explain about the person’s behavior if there is a likelihood of him or her exhibiting them in the public part of the hotel. Same with a friend or relative’s home. It can be a bit disconcerting for everyone concerned if your child or adolescent takes his clothes off and races through your friend’s home stark naked.
  • If you are traveling by plane, call the airlines as far in advance as you can, and tell them you will be traveling with someone who has special needs. Some airlines have “special assistance coordinators.” You may wish to explain about the person’s needs and some of the behaviors that may affect other travelers, such as rocking in their seat. If the person is a rocker, asking for bulkhead seats or the last row of seats on the plane will limit the number of fellow travelers that are impacted by the rocking. If you need assistance getting the person and luggage to the gate or to change planes during the trip, call ahead and reserve ‘wheelchair assistance.’ Even if the person does not need a wheelchair, this guarantees that someone will be waiting for you and available to assist you. (This was suggested to me by a special assistance coordinator when I told her that the help I had requested had not been provided on a recent trip). When requesting the wheelchair, you may need to explain about the person’s autism. For example, I have explained in the past that my son with autism had difficulty moving forward in a purposeful manner and we needed help to get to the gate to catch a connecting flight.
  • Persons with autism should always carry identification. Make sure he or she has an id tag attached to him or him somewhere, with a current phone number written on it. You can order medical bracelets, necklaces and tags to attach to shoe laces. Additionally, if the person can carry it in his or her pocket, make an ID card with a current photo, date and phone numbers. Be sure to put any information that is important to know such as allergies and medications, and any special information (i.e. non-verbal).
  • Adult passengers (18 and over) are required to show a U.S. federal or state-issued photo ID that contains the following: name, date of birth, gender, expiration date and a tamper-resistant feature in order to be allowed to go through the checkpoint and onto their flight. Acceptable identification includes: Drivers Licenses or other state photo identity cards issued by Department of Motor Vehicles (or equivalent) that meets REAL ID benchmarks (at time of writing, all states are currently in compliance).

Using many of the tips listed above has made traveling much easier for our family. Now, we look forward to any travel opportunity as we all enjoy the experience. A little planning goes a long way!

How does visual thinking work in the mind of a person with autism? A personal account

March 13, 2011

by Temple Grandin

1. INTRODUCTION

My mind works similar to an Internet search engine, set to locate photos. All my thoughts are in photo-realistic pictures, which flash up on the ‘computer monitor’ in my imagination. Words just narrate the picture. When I design livestock facilities, I can test run the equipment in my imagination similar to a virtual reality computer program. I did not know that this was a special skill until I started interviewing other people about how they think. I was surprised to discover that the other nonautistic equipment designers could not do full motion test runs of equipment in their minds.

My mind is associative and does not think in a linear manner. If you say the word ‘butterfly’, the first picture I see is butterflies in my childhood backyard. The next image is metal decorative butterflies that people decorate the outside of their houses with and the third image is some butterflies I painted on a piece of plywood when I was in graduate school. Then my mind gets off the subject and I see a butterfly cut of chicken that was served at a fancy restaurant approximately 3 days ago. The memories that come up first tend to be either early childhood or something that happened within the last week. A teacher working with a child with autism may not understand the connection when the child suddenly switches from talking about butterflies to talking about chicken. If the teacher thinks about it visually, a butterfly cut of chicken looks like a butterfly.

2. PUTTING LITTLE PIECES TOGETHER

When I design equipment, I take bits and pieces of other equipment I have seen in the past and combine them to create a new system. All my thinking is bottom-up instead of top-down. I find lots of little details and put them together to form concepts and theories.

During the last 5 years, I successfully used this method to fix some of my health problems. Most people have to have a theory first, and then they try to make the data conform to it. My mind works the opposite way, I put lots of little pieces of data together to form a new theory. I read lots of journal papers and I take little pieces of information and put them together as if completing a jigsaw puzzle. Imagine if you had a thousand-piece jigsaw puzzle in a paper bag and you had no idea what the picture on the box is. When you start to put the puzzle together, you will be able to see what the picture is when it is approximately one-third or one-quarter of the way completed, When I solve the problem, it is not top-down and theory driven. Instead, I look at how all the little pieces fit together to form a bigger picture.

When I was in college, I called this finding the basic principle. On everything in life, I was overwhelmed with a mass of details and I realized that I had to group them together and try to figure out unifying principles for masses of data.

3. FINDING A UNIFYING PRINCIPLE IN SCIENTIFIC LITERATURE

I have recently started to lose my hearing. The ear specialist said that there was nothing I could do. I did not accept this; so I spent two weeks at the computer reading journal papers on sudden sensorial hearing loss, Meniere’s disease and other disorders. I had to read hundreds of abstracts and journal papers just to get the background information so that I could find the answer that would save my hearing. I was looking for a unifying principle that would explain all the research results. One study reported that steroids such as Prednisone could save my hearing and another study reported that steroids do not work. How did I sort the data out? The first clue was that many studies were published in arthritis journals instead of ear and nose journals. The reason for this is that arthritis doctors really understand autoimmune disorders where the immune system attacks a person’s body. In my mind, I pictured wrecked, deformed arthritic joints. For a treatment to be successful, the drug has to be given before the immune system has destroyed the joints. I then had a flash of visual thinking insight. I imagined that the immune system attacking my inner ear was such as a house on fire. This is what I call a visual symbol picture. If the fire is put out when it is confined to a waste basket, the house can be saved. If the whole house starts burning, it will be destroyed. The explanation for all the conflicting studies in the medical journals was really simple. Steroid drugs such as Prednisone put out the fire of autoimmune inflammation, but they do not repair the damage. Treatment has to be started before the ear is wrecked. The explanation for all the conflicting scientific studies was a simple basic principle. I had to get a prescription for Prednisone before the autoimmune inflammation destroyed my inner ear. I looked up a second ear specialist in the phone book and he immediately gave me the prescription that saved my hearing.

4. FILLING UP THE INTERNET IN MY MIND

The method of bottom-up thinking really works well for me in problem solving where a basic principle has to be determined from masses of conflicting data. One disadvantage of my kind of thinking is that huge amounts of data are required to find the answers. Since my mind works similar to an Internet search engine, my ability to solve problems got better and better as I had more and more experiences and read more and more books and journal papers. This provided lots of images in my memory for the search engine in my mind to search. Many people have told me that my talks have improved between the ages of 40 and 60. My ability to think in a less rigid way keeps getting better as I fill up the Internet in my mind with more and more information. I greatly improved socially in my 40s and 50s compared with my 20s. This was due to having more experiences in my memory that provided guidance on how to behave.

5. DOOR SYMBOLS

When I was in high school at age 16, many teachers did not understand why I kept talking about going through little doors and thinking in visual symbols. Since my mind stores information as photo-realistic pictures, I do not have true abstract thinking. To visualize the concept of my future after high school, I had to use door symbols. In fact, the first door symbols were real doors I could practice walking through. Today I no longer think in door symbols because I have a huge database in the Internet inside my head. Instead of visualizing doors, I visualize either real past experiences or events I have read about.

6. CATEGORIES ARE THE BEGINNING OF CONCEPT FORMATION

To form a concept from the many specific photo-realistic pictures I have stored in my memory, I sort them into categories. Categorization of my specific visual memories was the beginning of concept formation (Grandin 2000, 2002). When I was a child, I categorized dogs from cats by sorting the animals by size. All the dogs in our neighborhood were large until our neighbors got a Dachshund. I remember looking at the small dog and trying to figure out why she was not a cat. I had to find a visual feature that she shared with big dogs. I had to create a new category in my mind to differentiate. All dogs, no matter how big or small, have the same nose shape. My concept is sensory based, not word based. Other ways of sensory-based categorization would be sound (barking or meowing) or smell.

Researchers have found that people with autism often have difficulty in forming new categories (Minshew et al. 2002). When I was a child, we played lots of games such as Twenty Questions that forced me to get good at thinking in categories. Category formation is a fundamental property of the nervous system. Brains are wired to put visual information into categories (Freedman et al. 200 1). The hippocampus also has the ability to determine whether or not similar photos of objects are the same or different (Bakker et al. 2008). Observations of stroke patients have shown that brain damage can cause them to lose their ability to categorize objects such as tools, but they can still categorize vegetables and animals (e.g. Mummery et al. 1998).

In my case even abstract questions are answered by putting photo-realistic pictures into categories. One time I was asked ‘Is capitalism a good system?’ To answer this question, I put pictures from countries that had different types of governmental systems into the following categories: (i) capitalistic, (ii) capitalistic/ socialistic, (iii) socialistic, (iv) benevolent dictatorship, (v) brutal dictatorship, and (vi) war and chaos. These pictures were taken from my memory and they are from experiences travelling or the news media. My answer was that I absolutely do not want to live in a brutal dictatorship, or war and chaos. Pictures helped me make a choice because in the last two choices I see news photos and TV images of killing and destruction.

My ability to provide a well thought-out answer has greatly improved with age because I have travelled more, and have more pictures both from actual experiences and from reading. They can be sorted into the different categories. When I read, I convert text to images as if watching a movie. The images are then stored in my memory. In college, I photocopied images of my class notes into my brain. When I was a teenager, answering the question about capitalism in an intelligent manner would have been impossible. I simply did not have enough experiences or enough information in my memory to answer it.

7. HOW I DEVELOPED FASTER CATEGORY THINKING

In college, the process of sorting out the basic principles from masses of data was much slower and laborious compared with my abilities today at 60. 1 figured out my ear problem in two weeks. When I was in my 20s, it took me 10 times longer to develop a theory from 100 journal papers.

As an undergraduate, I did an honor’s thesis on the subject of sensory interaction. Here the question was how a stimulus to one sense, such as hearing, affects the sensitivity of other senses. I had over 100 journal papers and I numbered each paper. On small pieces of paper, I typed the major findings of each study. I then pinned hundreds of little slips of paper on a bulletin board. I called it my logic board. Since my thinking is totally non-sequential, I had to develop a way so I could see a display of all the information at the same time on the bulletin board. To discover the categories and concepts, I started pinning the slips of paper into different categories. It was very time-consuming. As I gained more experience with sifting through scientific research, I no longer needed the bulletin board. I became better and better at finding unexpected clues, such as many deafness treatment papers being in arthritis journals. From my previous scientific knowledge, I made the association of rheumatoid arthritis to autoimmune, and therefore saw that ear damage would work the same way as joint damage.

When I was young, my thinking process was extremely slow because I was less skilled at finding the basic principle from the masses of data. But skills in people on the autism spectrum still develop when they are adults. The more research I did analyzing the results of scientific studies, the better I got at it. I always read the methods section of a paper carefully so I can visualize how the experiment was done. Differences in methods often explain conflicting results of scientific studies.

8. DIFFERENT WAYS OF THINKING

For many years I thought everybody else thought in pictures the same way as I do. When I wrote Thinking in Pictures, I started interviewing people about how they think. I was shocked to learn that most people processed information differently to how I did. Most people are able to visualize their own car or visualize walking through their own house. They can do it because they are very familiar with it. I discovered the differences in thinking when I asked other people about objects they were less familiar with. I asked them about an object that everybody sees really often, but it was not visible when I asked the question. I always ask the question in the exact way so I do not bias the answer. ‘Access your memory of church steeples. How do they come into your mind?’ I was shocked to discover that many people saw a vague generalized steeple and sometimes it was a stick figure. They saw a generalized steeple where I saw only a whole lot of photo-realistic pictures of specific ones that I could identify. Research by Nancy Minshew and her colleagues has shown that in people with autism, word based tasks are processed in the visual parts of the brain. Functional magnetic resonance imaging scanning indicated that sentences with both high and low visual imageries were processed in the visual parts of the brain in the autistic subjects and that low visual imagery sentences were processed in the language parts of the brain in normal subjects (Kana et al. 2006). The sentences with high visual imagery were about animals and plants. One of the low visual imagery sentences was about arithmetic. When I did the experiment, I instantly saw my third-grade teacher writing on the blackboard and explaining borrowing in subtraction.

9. AUTISTIC THINKING IS SPECIALIZED

When I wrote Thinking in Pictures (Grandin 1995), I thought everybody on the autism/Asperger spectrum was a visual thinker. People with autism and Asperger’s are specialist thinkers. They are good at one thing and bad at other things. From both books and interviews, I have concluded that there are three principal types of specialist thinking.

  1. Photo-realistic visual thinkers–such as I. All my thoughts are in photo-realistic pictures (Grandin & Johnson 2005). My area of weakness is in algebra because there is no way to visualize it. Visual thinkers can do geometry and trigonometry, but not algebra. For my work, visual thinking is very important. I can see everything in my head and then draw it on paper. Figures 1 and 2 show two of my drawings, done by hand, of livestock handling facilities. They date from the mid-1980s when I did much of my best work.
  2. Pattern thinking–music and math mind. This is a more abstract form of visual thinking. Thoughts are in patterns instead of photo-realistic pictures. Pattern thinkers see patterns and relationships between numbers. Some of the best descriptions are in Daniel Tammet’s book Born on a Blue Day (Tammet 2006) and in Jerry Newport’s book Mozart and the Whale (Newport et al. 2007) The weak area in pattern thinkers is usually reading and writing composition.
  3. Word-fact thinkers. These individuals have a huge memory for verbal facts on all kinds of things such as film stars and sporting events. They are often poor at drawing and other visual thinking skills.

Figure 1: Drawings of livestock handling facilities by Temple Grandin dated May 13, 1985.

Figure 2: Drawings of livestock handling facilities by Temple Grandin dated November 2, 1987.

10. DIFFERENT KINDS OF BRAINS

Recent research on the white matter in the brain may provide an explanation for the uneven profile of abilities that is found in many individuals with autism. There are defects in the white matter interconnections between different localized brain regions. Courchesne et al. (2004) called these connections the ‘computer cables’ that wire different parts of the brain together. The frontal cortex gets less connections than other parts of the brain, but some local areas in the brain may get extra connections (Minshew & Williams 2007). Casanova and colleagues (2006, 2007; Casanova & Trippe 2009) found that the brain of both famous neuroscientists and people on the autism spectrum have more circuits (mini-columns) per square centimeter of brain. They suggest that this may explain savant-like skills. The disadvantage of this type of brain construction is that these small circuits have fewer long-distance connections between distant brain regions that facilitate complex social behaviors.

There is a wide range of brains that should be considered part of normal variation. A brain can be built with larger fast circuits that facilitate social communication or smaller, slower circuits that improve cognition in a specialized area.

In any information processing system, there are always trade-offs. Brains with high-speed connections to many distant areas will be fast and details will be missed. Research shows that normal brains fail to process details that the autistic person perceives (see Happe & Frith 2009; Happe & Vital 2009). My model for visualizing the different types of brains is a large corporate office building. The president (frontal cortex) is located at the top and he has telephone and computer connections (white matter) to offices throughout the building. I hypothesize that in a highly social brain, the frontal cortex has high-speed connections that go mainly to the department heads in the building. The network is fast and details are omitted. In the autistic/Asperger brain, the frontal cortex is poorly connected, but the visual and auditory parts of the brain (technical nerd departments) have lots of extra local connections providing better processing of detailed information.

11. AUTISTIC INTELLIGENCE

Michelle Dawson, a woman with autism, has teamed up with Laurent Mottron, a researcher in Canada, to show that autistic intelligence goes beyond just rote memorization. Instead of using just the Wechsler IQ tests, they tested both normal and autistic children with Raven’s Progressive Matrices (Dawson et al. 2007). In this test, the person is shown complicated patterns and he/she has to choose the pattern that will complete a series of patterns. Dawson and colleagues found that the IQ scores for the autistic children were 30-70 percentile points higher on the Raven’s compared with the Wechsler Intelligence Scale for Children (WISC), while normal children have similar IQ scores when given the Raven’s and the WISC. Scheuffgen et al. (2000) found that children with autism can show fast information processing despite poor measured IQ. These results show that autistic intelligence is truly different.

In 2006, Nancy Minshew and her colleagues performed a method called diffusion tensor imaging on me. They found a huge white fiber tract that runs from deep in my visual cortex up to my frontal cortex. It is located in the brain slice made at the level of my eyes. It is almost twice as large as my sex- and age-matched controls. I used to joke about having a big high-speed Internet line deep in my visual cortex. It has turned out that I really do have one. This may explain my ability to read massive amounts of detailed literature and sort out the details. In my case, abstract thought based on language has been replaced with high-speed handling of hundreds of ‘graphics’ files. Studies of patients with fronto-temporal dementia show that language-based thinking can cover up detailed visual thinking and music. As the disease destroys the frontal lobe and the language parts of the brain, art and music talent can emerge in people who had no previous interest in art or music (Miller et al. 1998, 2000; see also Snyder 2009).

12. HARNESSING AUTISTIC CREATIVITY AND ASPERGER’S SYNDROME

I am concerned that people with mild Asperger’s syndrome may be held back by the diagnosis because people may perceive them as not capable. Simon Baron-Cohen asks ‘is Asperger’s syndrome a disability?’ (Baron-Cohen 2000; see also Baron-Cohen et al. 2009). Many famous musicians, scientists, artists and politicians would probably be diagnosed with Asperger’s syndrome if they were children today (Ledgin 2002; Fitzgerald & O’Brien 2007). What would happen to them in today’s system? In the USA, the lucky ones get apprenticed into the Silicon Valley technical world by their parents. Many parents in technical fields teach their children their jobs at a young age. The unlucky ones do not have somebody to help them develop their skills. In countries such as China or India, a person with mild Asperger’s syndrome would go to engineering or computer science school. I have discussed this with parents from India or East Asia and they stress working with the child from a young age in career-relevant skills. We need to be working to develop the unique abilities of these individuals. I am worried about them getting ‘stuck in a rut’ and their creative skills will not be used.

Department of Animal Sciences, Colorado State University, Fort Collins, CO 80523, USA 

Philosophical Transactions of the Royal Society(2009) 364, 1437-1442
doi: 10.1098/rstb.2008.0297

Reprinted from http://www.grandin.com/inc/visual.thinking.mind.autistic.person.html with permission.

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