FAQautism » Caregiver Support

No Single Strategy

dwightk — Tue, 30 Nov 2010 04:01:01 +0000

Autism spectrum disorder is a “range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior” (Autism Fact Sheet, 2009).The key words here are “range” and “complex.” Because each person is such a mixed bag of strengths and deficits, no single strategy is effective across the board.

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Autism is complex, and requires on-going assessment and monitoring of individual strengths and deficits. We cannot assume, for example, a non-verbal high school student with autism is unable to read or to understand physics. We cannot assume a college graduate and successful professional with autism is toilet-trained.

The Autism Society of America describes the uneven and unpredictable nature of autism by stating “although autism is defined by a certain set of behaviors, children and adults with autism can exhibit any combination of these behaviors in any degree of severity. Two children, both with the same diagnosis, can act completely different from one another and have varying capabilities” (Characteristics of Autism, 2008).

Teachers, parents, therapists, and others interested in the well-being of a person with autism might want to look at a wide variety of options for addressing the unique needs of that individual. We should take into consideration the unique combination of characteristics of each person when developing personalized strategies and interventions, thereby maximizing each person’s potential and impacting their quality of life. Sometimes that involves combining features of various approaches to autism rather than following just one specific program.

Autism Fact Sheet. Washington, DC: National Institute of Neurological Disorders and Stroke. Retrieved October 15, 2010, from http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#155613082

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed.-text rev.). Washington, DC: Author.

Characteristics of autism. Autism Society of America. Retreived October 15, 2010, from http://www.autism-society.org/site/PageServer?pagename=about_whatis_char

NOTE TO READERS AND LISTENERS: I am Cathy Knoll, a board certified music therapist and long-time friend of many folks with autism. At FAQautism.com we are committed to providing free, practical, everyday tips for making life better for people with autism. Feel free to send me a confidential email at talk@FAQautism.com with your thoughts or challenging situations or innovative solution. And don’t forget to check out our website for a wealth of ideas and a glimpse into the world of autism. http://FAQautism.com

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Calm Meals

dwightk — Tue, 16 Nov 2010 23:47:36 +0000

The modern traditions of family dinners can drive a person with autism right through the roof. Take a look at three simple tips to calm things down and make meals more enjoyable for your friend(s) with autism and everyone else in the house.

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I could actually write a whole book about this topic, but we try to make our FAQautism podcasts and e-mail posts short and sweet, so let us look at three key issues.

(1) ROUTINE. These days everyone in the family sort of grabs some food before basketball or in the middle of homework or when their favorite television show is over. This improvisational style may seem the best route until you find yourself dealing with behavior issues daily around meal time. Most individuals with autism thrive on routine, so consider picking a certain time for dinner each night and for breakfast each morning. This regular suppertime routine and breakfast will probably help everyone in the long run, but it will make a world of difference for your friend with autism.

(2) NO INTERRUPTIONS. Again, the new lifestyle involves constant pings, rings, bells, vibrating phones, and at least one television blaring. For just 15-minutes, turn it all off. You will be amazed how much that one act of courtesy will calm your friend with autism. And you will be amazed at the fun conversations that will erupt around the table.

(3) PITCH IN. One of the best gifts you can give your child, teen, or adult family member with autism is that of increased self-reliance. So everyone pitch in at the end of the meal to help with clean-up. Give your friend a different job each day, so he can enjoy the routine of clearing table on Mondays, emptying dishwasher on Tuesdays, taking out trash on Wednesdays, and so on.

TIP FOR THE DAY: All of these strategies may seem like a burden to the rest of the family, but just introduce the new routines quietly and cheerfully, accepting no grumbling, arguments, or drama. Most families and group homes that follow these three tips have commented on the increased calmness, decreased tantrums, and general contentment for their friend with autism. So, give it a try.

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Making Change Common

dwightk — Fri, 29 Oct 2010 13:33:00 +0000

Many individuals with autism have problems with change, whether unexpected changes in their daily routine or a significant shift in their life such as a family split or moving to a new school. Autism can also cause a person to be intolerant of wearing new shoes, sleeping on a new pillow, using a different type of soap or toothpaste, or eating a different brand of soup. Let us look at one strategy that can gradually help our friends with autism become more tolerant of change in their lives.

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Because of individual differences, it is impossible to develop one fool-proof strategy for increasing tolerance for change and for decreasing agitation or explosive outbursts in the face of change. But it is helpful to look at strategies that have worked for others people with autism. One such option to consider is that of making change common.

I noticed years ago that youngsters with autism in larger families seemed to be more flexible and more tolerant of change. Keep in mind that this observation was not based on scientific data, and that I certainly knew some children with large families who were, indeed, extraordinarily obsessed with routine and quite intolerant of even minor changes in the details of their daily lives. But, in general terms, growing up in a busy household seemed to make some individuals with autism more able to cope with unexpected events and sudden changes in schedule.

Over the years, some families and teachers have successfully instituted the “big family” strategy of intentionally making change a part of the daily routine for children, teens, and adults with autism. Every day, teachers and parents purposefully insert one or more unexpected change in schedule or a change in one or more aspects of daily life, e.g. a new snack or menu item at a meal, a new pair of socks or t-shirt, a new music CD while riding in the car, or a different type of shampoo.

TIP FOR THE DAY: We certainly want to respect the fact that autism causes intolerance for change for many individuals with autism, but we can sometimes help them gradually learn to cope if we make change part of their daily routine.

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State the Facts

dwightk — Tue, 19 Oct 2010 04:01:45 +0000

Some people with autism need the detailed descriptions and social stories well in advance to give them time to prepare emotionally for transition or for an upcoming event. Others tend to focus on the reality of the moment, making extraneous explanations and detailed advance preparation rather irritating. In some cases, it is better if we just state the facts.

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+ Matter-of-fact reports. Anticipation of upcoming events can actually add stress and increase agitation for some individuals. If our friends tend to take life as it comes along, we might want to adopt a matter-of-fact reporting style, just announcing the schedule for the day without adding extra detail.

+ Minimize fanfare. Although some individuals with autism need the extra preparation, others deal with upcoming events and changes better if we minimize the fanfare. For example, in the case of moving to a new house or school, we can simply announce the new event by saying something like this, “In May we are moving to this white house with a grey roof.” Then, the next week, we might say, “Your bed and books and toys will move to a new room in May.”

The straight forward, no-frills style of announcing new events or happenings can be much more acceptable than a long, detailed explanation like, “Honey, Dad needs to move closer to Granny so he can take care of her, and mom has a new job in Adamsville. So, Son, I am sorry that we will have to move away from our home. I know you love our home. And I know it will be hard for you to move away from a place you love and into a new house. But, don’t worry, Son. We’ll let you help us pick out a new home in Adamsville, one that has a big bedroom just like your bedroom. And we will find one that has a big backyard with trees just like our house here. I promise you will learn to love your new house. The important things is that we will all be together, Son, so, don’t you worry, we will help you make this change and will help you feel comfortable in your new home.”

TIP FOR THE DAY: Some people, whether they are diagnosed with autism or not, would not have dreamed of worrying about the move if it weren’t brought up. The long explanations and effusive apologies can be a red flag that increases anxiety and builds stress. So, in some cases, it is better to simply announce the facts and move forward.

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Safety ID

dwightk — Wed, 29 Sep 2010 04:01:16 +0000

Individuals with autism who need some assistance in an emergency situation will usually have someone close by to help in the event of an unexpected disaster such as a fire, storm, car wreck, or earthquake. But the possibility of separation always exists, so we should consider the options for a safety ID in the event of an emergency.

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Picture ID cards are essential. In addition to a photo of the individual and their name, you might consider including some of the following information.

1. CONTACT. Include the name of contact person, relationship, phone numberd. and e.mail address. You might even have a small photo of that contact person. Even if your youngster knows his contact information, you might consider including names and phone numbers since anyone can get flustered in an emergency and forget important facts.

2. AUTISM: You might want to include a brief explanation of your youngster’s situation on the back of the card. For example, the statement could say something like this: “Because Diane is autistic, she is not able to answer questions and she gets very agitated in unfamiliar situations. If she screams and hits, just calmly and quietly tell her that you know she is upset and call us so she can hear a familiar voice.”

Although photo ID cards are important, they are not always accessible if the person is not close to their backpack or wallet. So we need to find a way to keep identifying information on the person. Some folks with autism can tolerate an ID bracelet or “dog-tag” type necklace, especially if they start wearing it at an early age.

I don’t know about methods for applying permanent identifying information such as microchips or tattoos, but I do know that some individuals with autism are escape artists and others have sensory issues that prevent their wearing jewelry ID. If a person tends to run or to hide away from other people – especially when faced with an emergency situation or unexpected separation from their friends or family – caregivers may want to explore some sort of permanent ID.

I hope folks will share their ideas for ID’s. Just click on the comments button or send us a message to talk@FAQautism.com.

NOTE TO READERS AND LISTENERS: I am Cathy Knoll, a board certified music therapist and long-time friend of many folks with autism. At FAQautism.com we are committed to providing free, practical, everyday tips for making life better for people with autism. Feel free to send me an email with your thoughts or challenging situations or innovative solution. Send email to talk@FAQautism.com And don’t forget to check out our website for a wealth of ideas and a glimpse into the world of autism. http://FAQautism.com

Published on: Apr 7, 2008

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Love My Blankie

dwightk — Tue, 28 Sep 2010 04:01:05 +0000

Parents of a teen with autism are concerned about their son’s love for his childhood blankie. They said he won’t go to sleep without it, but that it is wearing down to shreds. They are wondering if it is appropriate to allow him to keep the blankie. And, if so, how can they help him preserve it so he can continue to keep it close at bedtime?

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Although not everyone agrees with me, I feel as if obsessive interest in an object like a blanket, a pair of shoes, a family photo, a book, or a favorite t-shirt is an inherent part of autism. Unless some serious health issues are concerned, it seems to me that we can allow our friends to hang on to things that bring them comfort and connections with pleasant memories in the past. Here are a few ideas that have worked for families over the years to help preserve those items that wear away.

TAKE PICTURES. Before the final pillow, teddy bear, or pair of shoes is wearing down to nothing, take pictures of your friend holding or wearing the favorite object. Sometimes the photos help smooth the transition to “life without my favorite pillow.” Also take photos of favorite pets, favorite cars, or favorite teachers to help smooth the transition to new pets, cars, or teachers.

SAVE THE SHREDS. When the t-shirt, blanket, or pillowslip is thread-bare and falling apart, rescue the shreds by sewing them in quilt fashion on a throw pillow. Teens, college kids, and even adults have favorite throw pillows, so it is certainly age-appropriate to integrate his favorite baby blankie into a pillow to keep on his bed or in a favorite recliner.

These are just a few ideas that help preserve favorite items and allow them to stay connected to old favorites via the remnants. This may appear a bit fanatical to some people, but it makes perfect sense to a person with autism who deals with exceptional obsessions every day.

TIP OF THE DAY: Our friends with autism probably appreciate our recognizing their extraordinary obsessions and our efforts to help preserve their favorites.

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Volunteer Job

dwightk — Mon, 27 Sep 2010 04:01:07 +0000

Some individuals with autism have full-time or part-time jobs, independently or with support. Some people pursue successful and thriving careers. But, for a variety of reasons, others are unable to hold a “regular” job. One option in this case is to pursue a career as a volunteer.

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Volunteer work has a number of advantages, not the least of which is life satisfaction. Volunteering also gives some structure to daily schedules, purpose to life, and opportunities to meet and interact with new people. Working as a volunteer gives a person opportunities to make connections with their extended community and to build on their repertoire of job-related skills. Over time, a person may be able to move from being a volunteer into a paying job as they develop new skills and make connections with potential employers through their volunteer efforts.

Sometimes we need to think creatively to find an appropriate volunteer “job,” but the benefits are worth the effort. A volunteer can lend a helping hand for as little as twenty minutes a week or as much as five hours s a day. Some of my friends help fold bulletins at church, file medical records at the clinic, run the vacuum cleaner at the day care, help deliver Meals on Wheels, or helping an elderly neighbor put clothes in and out of a washer and dryer. Volunteer opportunities can range from helping feed animals at a shelter to playing piano during lunchtime at a nursing home. Attention to detail helps some of our friends with autism excel at tasks such as inputting data, sorting papers or mail, putting library books on shelves, or filing records. Even individuals with very limited skills can help water plants, push a grocery basket, or put newspapers on the porch for their neighbors.

TIP FOR THE DAY. Keep a sharp eye for volunteer opportunities that match the skills and interests of your friends with autism. All of our lives are enriched when people are given a chance to lend a helping hand.

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Snack Monster

dwightk — Thu, 23 Sep 2010 04:01:16 +0000

Several of my friends with autism are obsessed with snacks. Families and teachers report their efforts to limit snacks lead to explosive behavior. One youngster began sneaking out into the kitchen to steal bags of chips or cartons of ice cream, hiding them in his room. Let us look at some ideas to help successfully tame the snack monster.

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Off-limit snacks. Some individuals with autism have dietary restrictions that make some foods off-limits.The only way to effectively stop our friends from eating off-limits foods it to simply remove them from the house. Without any comments, announcements, or fanfare, simply quit purchasing those foods. So, for example, if a teen has dietary restrictions related to sugar, then cookies, ice cream, chips, sugared pop, candy, and other sugar snacks must not be in the house.

Limited portions. The other critical step in decreasing the volume of snack consumption is to decrease the size of portions. Rather than having a big box of snack crackers, nuts, or seasoned pretzels on the shelf, break the package into small portions. The smaller snack-sized zip-lock bags work well for this.

Nagging. Whether your youngster has autism or not, nagging is not an effective behavior management tool. We tend to say things like, “You don’t get any more Oreos because they aren’t on your diet,” or “No more snacks for you, young man. They are bad for your health and ruining your dinner,” or “Starting tomorrow, you are going on a diet. No more ice cream or cookies for you.”

Choices. Instead, have a box with a variety of allowable in snack-sized ziplocks. Let the youngster pick his choice periodically, and avoid limiting snacks too harshly.

Stealing. There is only one fool-proof way to stop stealing – any foods that are off-limits must be totally unavailable. If a youngster cannot eat sugared foods, for example, it is not appropriate to have a half-gallon of ice cream or a package of Oreo cookies reserved in the kitchen for other family members.

TIP FOR THE DAY: The only effective way to decrease stealing and unhealthy eating is to completely remove the temptation by making off-limits snacks inaccessible. And remember to have a choice of healthy snacks readily available for your friend to enjoy.

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Too Talkative

dwightk — Wed, 22 Sep 2010 04:01:42 +0000

When one of my non-verbal friends with autism graduated from high school, she moved into a very supportive residential setting. Unfortunately, her attempts to communicate were rather irritating. She made loud, repetitive jabbering sounds to greet people or to express her opinion. Under the circumstances, should she be encouraged to talk, or not?

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Despite many years of intensive speech therapy, this young adult is unable to use sign language, picture symbols, or assistive communication devices very effectively because of significant cognitive and motor limitations. She tends to throw any objects rather than using them to communicate.

When she moved to her new home, everyone wanted to encourage her to interact, but her loud and repetitive noises when attempting to communicate with others made it necessary to teach her to verbalize in more appropriate ways so she would not irritate people around her.

Step 1. She was taught to get the attention of a person by touching their shoulder or hand and to make a soft sound, “Hey,” then wait for them to respond. People were encouraged to respond to her rather quickly rather than allowing her attempts to get their attention to escalate. If they were not able to give her attention at that point, they said, “I will talk to you in a minute,” or “Wait, please. I cannot talk now.”

Step 2. Once she had their attention, she could point or show the person what she wanted to talk about. For example, if she wanted a drink, she could point to the refrigerator. Or, if she was wondering about weekend plans, she could bring the staff her picture schedule. Again, the staff were trained to listen attentively and to respond to her rather than ignoring her until she irritated them.

Step 3. She was taught to use one soft, single-syllable sound when she wanted to say something rather than repeating phrases loudly over and over again.

Step 4. The staff and her peers in her new living situation were encouraged to acknowledge her verbalizations as if she had spoken words or phrases they understood – similar to talking to a person who has had a stroke. They could reflect her communication attempts by saying something like, “You really like that apple pie, don’t you?” or “You want to wear your purple sweatshirt.”

Step 5. Because this young lady is a sociable person who obviously loves to “talk,” people in her community were encouraged to take a bit of time with her every day to talk to her while riding in the car, sitting on a swing, looking at the newspaper together, or eating meals. She seems to really cherish those interactions, and, maybe as a result of those personal connections, became a bit less demanding and more content. Her loud, repetitive, and rather irritating verbalizations are decreasing, probably because she is now able to get the attention of folks and to communicate with them more appropriately. And, because people around her purposefully take time to interact with her, everyone is more content.

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Holding a Grudge

dwightk — Tue, 21 Sep 2010 16:39:24 +0000

Everyone encounters injustices in life, but sometimes it seems as if autism is a magnet for difficulties and conflict with agencies, teachers, insurance companies, doctors, schools, committees, and, sometimes, even society in general. What is the best response when we encounter criticism?

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Some of my friends with autism and their families have dealt with difficult people or inflexible policies over the years. For example, some parents have told me of a spouse, member of their extended family, neighbor, therapist, teacher, classroom aid, administrator, group home staff, job coach, or medical professional who has been judgmental or uncaring about their child. Some people in their lives have refused to accept their child, have been overly critical of the child or the parent, or have had unrealistic expectations.

Some families have encountered roadblocks from agencies and decision makers about issues such as funding services, providing critical services, considering appropriate placement, or other issues that impact the life of their loved one with autism.

Sometimes the attitudes or reactions of complete strangers can be the source of our anger when it comes to autism. For example, a grocery store clerk or a parent at a baseball game may glare at us or at our youngster in the midst of a meltdown. When we least expect it, we may overhear someone making a critical remark about our parenting skills or about our youngster with autism. I’ve heard young children blurt out a hurtful remark like, “What is wrong with that boy?” And I’ve heard adults say things like, “Why don’t his parents do something to stop that?”

How should we respond when this happens? How can we be expected to overlook such stinging, hurtful remarks? Over the past 40 years, my friends who have chosen to do just that, to ignore criticism and biting comments, have fared far better than those who hold grudges. You can waste a lot of energy holding a grudge against a person or an agency or society in general for injustices to your child with autism. Sometimes it is best to forgive and forget and move on. This includes forgiving a person who does not necessarily deserve forgiveness.

TIP FOR THE DAY: All of us, whether diagnosed with autism or not, can benefit from growing thick skin and forgiving people for their rudeness – whether they intended to hurt feelings or not. Just focus on the positive and purposefully choose to overlook the negative happenings in our lives.

We can also benefit from focusing on sharpening our own skills so we can more systematically address challenging issues that can arise in the lives of our friends with autism. Click on the Toolkit tab on our website for great resources; http://FAQautism.com

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Daily Chores

dwightk — Mon, 20 Sep 2010 04:01:02 +0000

In the midst of the hustle and bustle of daily life, it is certainly easier to just take care of every detail of the lives of our friends with autism. In reality, all children and teens, whether they have autism or not, benefit from having the responsibility of daily chores.

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BUILD ON STRENGTHS. Some of my friends with autism really thrive on daily routines and rituals. Unlike most of us, they actually enjoy mundane, routine tasks. One of my friends rather obsessively picks up lint or other small objects off the floor. Others file away books or put music instruments in their rightful places when waiting for their music therapy session. One young lady is thrilled when I give her permission to put away the clean dishes in my kitchen, and another loves swiffing my wood floors. I’ve encouraged their families, teachers, and job coaches to find daily chores that allow these individuals to lend a helping hand.

START EARLY. Nearly every person I know with autism clings to interests and habits from their early childhood. It is important that we teach all children to help themselves as much as possible and to pitch in around the house, but autism adds urgency. Even toddlers can pitch in with daily chores around the house to some extent. Approach chores with a positive attitude, and include kids in the process.

ENCOURAGE SELF-SUFFICIENCY. Busy schedules and looming deadlines can keep us from taking the time necessary to teach our youngster with autism to be self-sufficient. It is certainly quicker and easier to simply pick out clothes, tie shoes, gather up schoolbooks, or set the table for supper. If your life is like a pressure-cooker, relax and take just five minutes a day to focus on teaching your child just one task a week or so. Be patient, allow them time, and do not expect perfection. It is the effort that counts.

TIP FOR THE DAY. Granted, it is certainly easier for us to do things ourselves. But we can make a real difference in the long run if we make a pledge to take time each day to allow our child to participate in daily chores.

Nov 18, 2009

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Evening Round-up

dwightk — Wed, 15 Sep 2010 04:01:35 +0000

No matter how tired everyone is in the evenings, you may discover taking some time to slow down, get organized, and make connections with your youngster with autism is an invaluable investment of time and energy. Remember that the goal is not perfection, but rather to increase contentment and decrease stress for everyone.

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Take a few minutes to do a few routine tasks so you don’t have to deal with them in the chaos of the morning rush. Back when I was a young, harried mother, I found myself stomping around bellowing orders and empty threats as I tried to get the kids in bed. I kept thinking of all the things that needed my attention. As my stress level rose, I made everyone around me miserable. So, I’m suggesting an alternate plan. Make an effort to remain calm in spite of the loud sound of looming deadlines. You can’t control every aspect of family life, and you can’t make everything perfect, so just relax. Establish the Evening Round-Up as a regular routine to get ahead of the flood, thinking of it as an “investment in contentment” rather than a “time thief.”

Here’s a sample Evening Round-Up checklist to get you started. Without nagging, spend some time calmly help your youngsters get their checklists completed.
1. CLOTHES. Does each person have a set of clean clothes? Do they need gym clothes or after school clothes or basketball league clothes? What about shoes, socks, underwear, coats, hats, etc.?
2. BODY. Clean head to toe in the evenings to prevent a morning rush. That means shower or bathe, wash hair, brush teeth, and even shave if needed.
3. BACK PACK. Put all work supplies and/or books, permission slips, lunch money, and other necessary items in back pack before going to bed.
4. CONNECTION. Take a few minutes for quiet interaction with your youngster with autism. This is important even if your youngster is non-verbal or does not seem to participate in the conversation. Read a story or talk about their day to help them make an emotional connection with you and wind down. Take time to review the schedule for the upcoming day, to discuss concerns, and to review rules and/or expectations – whether they seem to understand or not. And don’t forget to remind your youngsters of your love and support.

TIP FOR THE DAY: Remember, perfection is not the goal here. You just want to make an investment of 30 minutes every night to increase contentment. Believe me, your efforts will pay off big time for all involved.

And take a bit of time to learn new ways to systematically address challenging issues that can arise in the lives of our friends with autism. Click on the Toolkit tab on our webiste for great resources; http://FAQautism.com

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Let’s Go Potty

dwightk — Tue, 14 Sep 2010 04:01:03 +0000

For a variety of reasons, some individuals with autism are not toilet trained. Not being able to go to the bathroom independently raises a variety of challenges, one of which is needing reminders to go to the bathroom. Let’s look at that issue, particularly from the standpoint of privacy and respect.

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First, let’s take a look at the issue of respecting privacy. I often hear family members, teachers, and other caregivers say to an individual with autism, “Let’s go change your diaper” or “Go pee-pee before you have an accident.” I hear comments like that spoken loudly in public forums such as classrooms, family gatherings, and dinner tables. Even if our friend with autism does not appear to be embarrassed or even if he is just four years old, it would certainly be more respectful to say quietly, “Please come with me,” or “Let’s go wash our hands.”

Another issue that arises is confusion over the different terms used for the restroom. Among other things, toilets are called a bathroom, a restroom, the ladies room, the men’s room, or the john. The very nature of communication deficits related to autism stands in the way of making quick shifts between terms. One of my young adult friends with autism was asked by a friend if he needed to go to the bathroom. Taking that term very literally, the young man replied, “No, I took a bath last night.”

And, speaking of terms, parents might want to consider avoiding childish terms to describe “going to the restroom.” If a youngster with autism learns to say “pee-pee” or “Let’s go potty” when he is three years old, he is likely to use that same term when he is fifty-three.

The same can be true when we use anatomically correct words to label parts of the body. Sometimes folks with autism are unable to distinguish between words that are “o.k.” at home talking to parents and words that are more appropriate in social situations. A good rule of thumb is to use words at home that can also be said loudly in earshot of strangers in a restaurant or grocery store.

So, these are just some ideas to consider when dealing with private issues. It is up to us to set the tone for privacy and respect.

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Making Everything Perfect

dwightk — Wed, 08 Sep 2010 04:01:36 +0000

School started this week, so I’ve seen several challenging issues arise as young friends with autism attempt to adjust to new campuses, new classrooms, new teachers and classroom aids, new school routines, and new students in the hallways and classrooms. Moving to a new school can challenge even the most secure person, but the change can be particularly challenging to a youngster with autism. No matter how hard we try, it is impossible to make everything perfect during this time of transition.

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Observing this rough school adjustment period for students with autism year after year since 1974 has taught me several valuable lessons, one of which is to avoid trying to make everything perfect for these youngsters.
Our instincts compel us to make plans for weeks in advance to smooth out every possible challenge a young student with autism might possibly encounter. Granted, we want to help youngsters adapt to new settings gradually, but, in the long run, we don’t do them any favor by removing all challenges.

Here are a few strategies that have worked for some of my friends with autism during the first few months of school as they struggle with transition to a new classroom situation. Keep in mind that every single person has different challenges and different preferences, so adapt to fit the needs of any specific student.

+ Celebrate the new. If our youngsters with autism are particularly upset about leaving their previous school and teachers behind, we certainly want to acknowledge that and give them time and space to grieve and even be angry. At the same time, we can set the tone for the new classroom by speaking positively about the upcoming year. Again, without too much fanfare, we can chat about events in the upcoming week and make positive comments about the new school and teachers and students.

+ Allow for adjustment. When behavior issues escalate at the beginning of a school year, we are likely to trace the cause to our friend’s intolerance for change since transition is challenging for many individuals with autism. Given those circumstances, teachers and parents might want to allow for an adjustment period and balance expectations for appropriate behavior with the need for patience on our part during the first several days or weeks or months of school.

TIP FOR THE DAY: We can inadvertently contribute to the transition problems by our words and actions. In most cases, the challenging behavior attached to transition decreases as the youngster with autism adjusts to the new place, new people, and new daily routine. It can actually be counterproductive in the long-run to try to remove all the challenges or to make the road so smooth that our friends with autism do not ever experience the frustrations of transition to a new school. Sometimes our best strategy is to relax and help them slowly adjust to he new setting.

I encourage you to take time to explore new approaches for addressing challenging issues that can arise in the lives of our friends with autism. Click on the Toolkit tab on our website for practical, to-the-point resources with workbooks and audio discussion. Our website is http://FAQautism.com

The following posts may also be helpful:

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Science of Autism

dwightk — Tue, 31 Aug 2010 04:01:49 +0000

Autism is complex. Each person diagnosed with autism is different, so what is true for one person may not be so for another. People living with autism and the professionals providing services often have more questions than answers. Slowly but surely, science is validating some facts about autism.

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Autism Speaks, founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism, has grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. The web address is http://autismspeaks.org

Recently, Autism Speaks invited the public to submit questions to their science team about autism research. They received over 3,000 questions in a short period of time, making it impossible to answer every single question. But they did combine the question topics and provided answers to seven most frequently asked questions. I encourage you to click on this link to see the answers the science team at Autism Speaks provided on their website:

http://bit.ly/9muWxE

The questions addressed by Autism Speaks in this link are:
1. Are you finding that autism is increasing at the same/similar pace worldwide?
2. Is there empirical evidence that parental age is a contributing factor to giving birth to a child with autism?
3. Has the rate of autism truly increased in the last 50 years or so or is it just that the classification of autism has gotten broader and as such the prevalence seems larger?
4. Any link between vaccines and autism? Put this issue to rest once and for all, one way or the other.
5. How can families participate in research studies?
6. Are you aware of any research being done on diet and its affect on children w/ autism? If so, what has been learned?
7. Why is autism more common in boys?

As you read information from Autism Speaks and other respected sources of data-based information about autism, remember the opening sentence of this podcast: “Autism is complex.” Given that complexity, it is literally impossible to apply the findings of any research study to every single individual with autism. But, scientific research does uncover evidence and discover trends that can be helpful to all of us as we strive to improve the quality of life of our friends with autism.

The following posts may also be helpful:

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Duct Tape Magic

dwightk — Mon, 30 Aug 2010 04:01:39 +0000

One of our regular FAQautism.com followers – a mom extraordinaire – sent a message with lots of good ideas for keeping life on track for her daughter. And for the rest of the family. Among other things, she recommended keeping a roll of duct tape handy. Duct tape? Why duct tape?

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1. This mom had a great idea for using duct tape to alleviate anxiety for her daughter when using a public restroom. Mom wrote, “Almost all the toilets have electric eye flusher systems – and the anxiety of it flushing when she wasn’t “ready” made her a wreck and me too – so I would tape over the electric eye while she was in the stall & then remove it when she was done.”

2. This mom also recommended duct tape for emergency repairs. If something breaks, you can fix it quickly and without fanfare. And I’m convinced duct tape has magic properties, i.e. somehow broken items stay together until you can get home and get a “real” repair job done.

3. Over the years, I’ve noticed the therapeutic qualities of duct tape. If one of my friends with autism gets anxious or frustrated, I stick a small piece of duct tape on the knee of their jeans or tennis shoes or even the palms of their hands. Repetitively sticking and unsticking the duct tape often distracts my friend and diffuses their distress.

TIP FOR THE DAY: I’ve noticed that duct tape comes in colors now, but, for some reason, I still like the traditional silver color. I keep a small roll in a ziplock bag with a small pair of scissors to get the tape going so I can tear off a bit easily.

Duct tape is handy, and so are our new FAQautism.com Toolkits. Click on the Toolkit tab on our website to check out these great resources; http://FAQautism.com

The following posts may also be helpful:

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Back to School Blues

dwightk — Wed, 25 Aug 2010 04:01:30 +0000

Some folks just don’t like change. Some folks with autism HATE change! As summer comes to an end, and the first day of school approaches, some students with autism respond with temper outbursts, poor sleeping habits, and stubborn refusal to follow directions. Even youngsters who seem to like school struggle with the transition. What can we do about the “Back to School Blues?”

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Because of individual differences, it is difficult to come up with a “one-size-fits-all” strategy for building a smooth bridge between summer and the school year. But several basic strategies have helped the process for lots of folks over the years.

ACKNOWLEDGE THE DIFFICULTY. If we recognize and accept that fact that resistance to change is a natural result of autism, we can take positive, pro-active steps to help our youngsters make a smooth transition from summer to school. The whole process can be less stressful if family members, teachers, and others accept the fact that transition and change are difficult for many individuals with autism. That doesn’t mean that we should ignore inappropriate and troublesome behavior, but it does mean that we can adopt an attitude of helping our friend on their journey rather than getting frustrated with their tantrums and stubbornness.

INTRODUCE CHANGE GRADUALLY. Several weeks before school starts, we can gradually begin introducing structure to the evening routine and to the morning routine. We can gradually begin waking our youngster up closer and closer to the time they will need to rise once school starts.

MAKE TRANSITION AN ADVENTURE. Purchase a calendar that can be used to keep track of the last weeks before school starts. Your youngster with autism can mark off each day in a countdown to school, and he can write down “back-to-school events” such as shopping for school supplies and Meet the Teacher night. Your family can have a “Last Day of Summer” party that includes swimming, carving a watermelon, churning ice cream, or other favorite summer activities. Granted, a low-key approach is better for some individuals with autism who would be overwhelmed with all this excitement, but others get distracted with the celebrations, making back-to-school blues evaporate.

We welcome your input. Share challenges and ideas based on your experiences or intuition. Just click on the comments button or send an e-mail to talk@FAQautism.com.

NOTE TO READERS AND LISTENERS: I am Cathy Knoll, a board certified music therapist and long-time friend of many folks with autism. At FAQautism.com we are committed to providing free, practical, everyday tips for making life better for people with autism. Feel free to send me an email with your thoughts or challenging situations or innovative solution. Send email to talk@FAQautism.com And don’t forget to check out our website for a wealth of ideas and a glimpse into the world of autism. http://FAQautism.com

The following posts may also be helpful:

Back to School Transition “Every year our son struggles with the transition from the...
VODcast: Back to School All families struggle a bit when it is time to...
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Amusement Parks and Autism

dwightk — Tue, 17 Aug 2010 04:01:24 +0000

Several friends with autism and their families have gone to amusement parks over the summer. The experiences have been different for all involved, so we are taking a few minutes to look at some challenges that may arise when visiting a large amusement park.

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1. Timing. Most large amusement parks such as Six Flags, Sea World, Disney World, and others get more crowded in the afternoons and early evening. If your friend with autism can tolerate large crowds and waiting in line, then you can go anytime. If not, you need to find the least crowded time. Also keep in mind that some of our friends with autism are “morning people,” and some are not. In order to give all the best experience, you need to plan the timing carefully.

2. Logistics. Some individuals with autism have special diets or medical needs, or need assistance with toileting. If so, plan in advance for taking care of those individual needs without too much fanfare. For example, if you are a mom and your 25-year-old son with autism needs a bit of assistance with bathroom issues, you need to locate the family restrooms so you can help him without making a scene.

3. Personal preferences. Remember that not everyone loves to ride the roller coaster and not everyone wants to get splashed by dolphins. It is hard to find the balance between encouraging a person to try something new and forcing them into a situation that makes them feel very uncomfortable. And some of our friends with autism are not able to articulate that well. So we need to watch closely – supporting and encouraging people as they try something new while at the same time, keeping a eye out for signs of serious discomfort and respecting their preferences. I’ve heard frustrated parents say things like, “We paid a lot of money for the tickets, so we aren’t going to just sit under this tree watching the people walk by.” But we need to know in advance that our friend may literally not be interested in the excitement, or that they really do prefer watching shows to taking wild rides.

TIP FOR THE DAY: I encourage introducing our friends with autism to new experiences and exciting adventures while at the same time respecting their preferences, no matter how offbeat they seem.

And it is always wise to take time to explore new approaches for addressing challenging issues that can arise in the lives of our friends with autism. Click on the Toolkit tab on our website for great resources; http://FAQautism.com

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Cooking Over a Campfire

dwightk — Mon, 16 Aug 2010 04:01:38 +0000

Over the years, many of my friends of all ages with autism have been intrigued with the process of cooking over a fire. Even people who have never shown much interest in eating have taken bites of food they have helped prepare over the colorful glowing embers and dancing flames.

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Take a look at our podcast, “Summer Campfires” for some tips about building a fire. Then try some of the recipes below, adapting them as needed for special dietary restrictions and very selective eaters.

S’mores. It is always fun to give your friend with autism a chance to help out by making a list of items needed for s’mores and shopping for them at the store – with your assistance only as needed. So, for example, if he is able to do so, let him find the ingredients in the grocery store without your help. Traditional s’mores use graham crackers, Hershey chocolate bars, and marshmallows. You can also try a less messy version by using the chocolate flavored graham crackers and marshmallows.

Bread on a Stick. Just stretch a canned butter biscuit into a long thin shape and spiral it around the end of a long stick. Wait until the flames have died down into glowing coals and slowly “bake” the biscuit over the fire, turning the stick slowly until your Bread on a Stick is golden on all sides. Slip it off the stick, let it cool a few minutes, then enjoy this delicious treat. I’ve seen some of my rather impatient friends with autism cook their bread very patiently.

Tip for the day. Many different snacks can be adapted for the campfire without too much special equipment. No need to cook the whole meal over the fire – just enjoy simple foods with one or two aspects cooked on the fire. It is an intriguing process for all. Enjoy!

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Extreme Communication

dwightk — Mon, 16 Aug 2010 04:01:29 +0000

What is a person trying to communicate when they suddenly start screaming, hitting, or biting? What are they saying when they suddenly drop to the floor or scratch their arm or hit their face? Teachers, family members, job coaches, therapists, and others spend a great deal of time and energy attempting to translate these characteristic forms of extreme communication displayed by some individuals with autism.

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It has been said that everything we do is an attempt to communicate something. Folks who have limited communication skills may resort to disruptive or hurtful behaviors or other extreme communication techniques in an attempt to let us know what is going on in their world. These outbursts can mean different things, so caregivers might want to document circumstances in detail when the behaviors occur to see if a pattern develops.

When a person with autism suddenly displays disruptive or destructive behavior, it usually can be translated to one of the following: (1) “I don’t want to do what you want me to do.” (2) “I am bored.” (3) “I’m tired of doing what I’m doing.” (4) “This is too hard.” (5) “I want you to pay attention to me.” (6) “My tummy / ears / foot / head hurts.” (7) “I’m overstimulated and need to calm down.” (8) “I don’t like / understand this change in routine.” (9) “I’m very tired.” (10) “I’m very hungry.” (11) “I really want a snack.” (12) “I need to go to the bathroom.” (13) “I want to keep doing what I’m doing, so don’t ask me to stop.” (14) “There is a firestorm going on inside my head.” (15) “I just need a hug.”

There are, of course, other issues that can result in an outburst by individuals with autism. But, often, such outbursts are an attempt to communicate. It is up to us to do the detective work necessary to translate these messages, usually by process of elimination. This is a very challenging task, but worth the effort in the long run.

Note to FAQautism.com listeners and readers: I am Cathy Knoll, a board certified music therapist and long-time friend of many folks with autism. At FAQautism.com we are committed to providing free, practical, everyday tips for making life better for people with autism. You can click on a button to send me an email with your thoughts or challenging situations or innovative solutions. Check out our website for a wealth of ideas and a glimpse into the world of autism. www.FAQautism.com

Originally Posted October 25, 2007

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