November 23, 2011

12 Tips For The Holiday Season

The Autism Society of America weighs in on the topic of reducing holiday stress with their:

Twelve Tips for Helping Living with Autism Have a Happy Holiday Season
While many happily anticipate the coming holiday season, families of people on the autism spectrum also understand the special challenges that may occur when schedules are disrupted and routines broken. Our hope is that by following these few helpful tips, families may lessen the stress of the holiday season and make it a more enjoyable experience for everyone involved. The following tips were developed with input from the Autism Society, the Indiana Resource Center for Autism, Easter Seals Crossroads, the Sonya Ansari Center for Autism at Logan and the Indiana Autism Leadership Network.

1. Preparation is crucial for many individuals. At the same time, it is important to determine how much preparation a specific person may need. For example, if your son or daughter has a tendency to become anxious when anticipating an event that is to occur in the future, you may want to adjust how many days in advance you prepare him or her. Preparation can occur in various ways by using a calendar and marking the dates of various holiday events, or by creating a social story that highlights what will happen at a given event.

2. Decorations around the house may be disruptive for some. It may be helpful to revisit pictures from previous holidays that show decorations in the house. If such a photo book does not exist, use this holiday season to create one. For some it may also be helpful to take them shopping with you for holiday decorations so that they are engaged in the process. Or involve them in the process of decorating the house. And once holiday decorations have been put up, you may need to create rules about those that can and cannot be touched. Be direct, specific and consistent.

3. If a person with autism has difficulty with change, you may want to gradually decorate the house. For example, on the first day, put up the Christmas tree, then on the next day, decorate the tree and so on. And again, engage them as much as possible in this process. It may be helpful to develop a visual schedule or calendar that shows what will be done on each day.

4. If a person with autism begins to obsess about a particular gift or item they want, it may be helpful to be specific and direct about the number of times they can mention the gift. One suggestion is to give them five chips. They are allowed to exchange one chip for five minutes of talking about the desired gift. Also, if you have no intention of purchasing a specific item, it serves no purpose to tell them that maybe they will get the gift. This will only lead to problems in the future. Always choose to be direct and specific about your intentions.

5. Teach them how to leave a situation and/or how to access support when an event becomes overwhelming. For example, if you are having visitors, have a space set aside for the child as his/her safe/calm space. The individual should be taught ahead of time that they should go to their space when feeling overwhelmed. This self-management tool will serve the individual into adulthood. For those who are not at that level of self-management, develop a signal or cue for them to show when they are getting anxious, and prompt them to use the space. For individuals with more significant challenges, practice using this space in a calm manner at various times prior to your guests' arrival. Take them into the room and engage them in calming activities (e.g., play soft music, rub his/her back, turn down the lights, etc.). Then when you notice the individual becoming anxious, calmly remove him/her from the anxiety-provoking setting immediately and take him/her into the calming environment.

6. If you are traveling for the holidays, make sure you have their favorite foods, books or toys available. Having familiar items readily available can help to calm stressful situations. Also, prepare them via social stories or other communication systems for any unexpected delays in travel. If you are flying for the first time, it may be helpful to bring the individual to the airport in advance and help him/her to become accustomed to airports and planes. Use social stories and pictures to rehearse what will happen when boarding and flying.

7. Know your loved one with autism and how much noise and activity they can tolerate. If you detect that a situation may be becoming overwhelming, help them find a quiet area in which to regroup. And there may be some situations that you simply avoid (e.g., crowded shopping malls the day after Thanksgiving).

8. Prepare a photo album in advance of the relatives and other guests who will be visiting during the holidays. Allow the person with autism access to these photos at all times and also go through the photo album with him/her while talking briefly about each family member.

9. Practice opening gifts, taking turns and waiting for others, and giving gifts. Role play scenarios with your child in preparation for him/her getting a gift they do not want. Talk through this process to avoid embarrassing moments with family members. You might also choose to practice certain religious rituals. Work with a speech language pathologist to construct pages of vocabulary or topic boards that relate to the holidays and family traditions.

10. Prepare family members for strategies to use to minimize anxiety or behavioral incidents, and to enhance participation. Help them to understand if the person with autism prefers to be hugged or not, needs calm discussions or provide other suggestions that will facilitate a smoother holiday season. If the individual becomes upset, it might also be helpful to coach others to remain calm and neutral in an effort to minimize behavioral outbursts.

11. If the person with autism is on special diet, make sure there is food available that he/she can eat. And even if they are not on a special diet, be cautious of the amount of sugar consumed. And try to maintain a sleep and meal routine.

12. Above all, know your loved one with autism. Know how much noise and other sensory input they can take. Know their level of anxiety and the amount of preparation it may take. Know their fears and those things that will make the season more enjoyable for them.

Don’t stress. Plan in advance. And most of all have a wonderful holiday season!

November 22, 2011

Holiday Stress: Reducing Anxiety And Increasing Enjoyment

Pre-planning for the holidays increases the likelihood for enjoyment. Autism Spectrum Therapies provides the following tips for:

Reducing Holiday Stress for Families of Children with Autism

Holidays can be stressful and over-stimulating for anyone, but particularly so for children with autism. Here are some helpful strategies to lessen your child’s anxiety and increase your family’s enjoyment of the holiday season:

• Decorate in gradual stages, rather than changing everything at once.
• Allow your child to interact with the decorations and help put them in place.
• Flashing lights or musical decorations can disturb some children. To see how your child will respond, experience these items in a store or someone else’s home first.

• Last minute holiday shopping can be stressful for children who rely on routines.
• If you do take your child shopping, allow enough time to gradually adapt to the intense holiday stimuli that stores exhibit this time of year.

Family Routines
• Meet as a family to discuss how to minimize disruptions to established routines and how to support positive behavior when disruptions are inevitable.
• Continue using behavior support strategies during the holidays. Try social stories to help your child cope with changes in routine, and visual supports to help prepare for more complicated days.
• Try using a visual schedule if you are celebrating the holidays on more than one day (e.g., Hanukah) to show when there will be parties/gifts and when there will not.

• If you put gifts under the Christmas tree, prepare well ahead of time by teaching that gifts are not to be opened without the family there. Give your child a wrapped box and a reward for keeping it intact.
• Wait until just before the holiday to set out gifts, especially large tempting ones.
• When opening gifts as a family, try passing around an ornament to signal whose turn it is to open the next gift. This helps alleviate disorganization and the frustration of waiting.

Play Time
• Prepare siblings and young relatives to share their new gifts with others.
• If necessary, consider giving your child a quiet space to play with his/her own gifts, away from the temptation of grabbing at other children’s toys.

Enjoy the holidays!

November 21, 2011

Reducing Holiday Stress

The hustle and bustle that comes with the holiday season seems to begin earlier with each passing year. Traveling with family and being away from home for several days in a row can be stressful, and  day-to-day activities such as shopping in a crowded mall or trying to tolerate loud noises from sidewalk bell-ringers can take a toll. To enjoy the holidays completely sometimes requires a plan. Below you will find a very good article by Dan Coulter in which he gives us the template. The essay is provided without edits.

Putting Fun Into Family Holiday Gatherings
By Dan Coulter

Holidays are all about expectations. For adults, holidays tend to bring back memories of the way things were when we were kids – or at least the way we remember them. We often follow traditions because we expect them to help us recapture the magic we felt and pass it on to our kids.
But unrealistic expectations can actually drain the fun from holidays, especially for kids on the autism spectrum. To make holidays fun for kids, we have to be able to see things through their eyes.

Some of my great childhood memories involve holidays. One of my best Christmas memories was getting my first two-wheel bike. Wow. My folks got it so right. They were heroes. It wasn’t just the bike, it was having my dad help me learn to ride and having my folks watch and encourage me as I pedaled up and down the cul-de-sac in front of our house. I can still feel that sense of celebration.

One of my other vivid childhood memories involves another Christmas. My dad bought me an electric train, but wouldn’t let me play with it because it plugged into the wall and I was too young. I have no idea what made my dad expect that I would get a kick out of watching him play with “my” train. I can still feel the frustration.

It’s hard enough to get holidays right with neurotypical kids. Planning a great time for families who have kids on the autism spectrum can take even more thought. But thoughtful planning can be the difference between fun times and a boatload of stress.

I think most holiday stress involves unrealistic expectations. If we set unrealistic goals, or try to meet unrealistic goals set by others, we’re just setting ourselves and others up for disappointment.
Which brings us to one of the biggest holiday challenges: extended family gatherings. You’re often getting together with people who you rarely see and who may not understand your child’s challenges, behaviors and needs.

Before you decide to decline a family invitation because the event is just too much trouble, consider doing some pre-emptive holiday planning. I’m talking about planning that takes into account the capabilities, interests and challenges of every family member who’ll attend the gathering.

This sort of planning shows that you’re not just asking everyone to accommodate your child. You’re also thinking about them and their kids. As soon as you’re aware a family gathering is being planned, volunteer to help. Be up front about your motives. You want to help make the event something that everyone involved will enjoy and remember. Consider circulating a survey to every family to gather information. What is each family member interested in? What activities do they enjoy? What activities bore them? What foods to they like and dislike? Does anyone have any allergies? Do they have special needs? Get someone in each family to try and see the event through the eyes of each person who will attend. You’re especially interested in kids, but collect the parents’ preferences too. If there was a similar family gathering last year, ask what folks liked and didn’t like.

Professional meeting planners depend on these sorts of surveys to help ensure their meetings are successful. You can take a page from their book. And the survey doesn’t have to be piece of paper. You can do it by email or just collect information over the phone.

Use the input from the survey and work with the party’s hosts to design an event around the people who will be there. (You may want to consider offering to host future events to give yourself more control.) Consider modifying existing traditions or establish new traditions to craft some aspect of the get-together to appeal to each person. It can make someone feel special to see that you’ve provided their favorite food or dessert, or for a child to see her favorite cartoon character among the decorations. Maybe you can have some of the kids bring their favorite board games. Trips to a zoo or local science museum or a sporting event can be fun. One Thanksgiving our extended family participated in a charity fun run, which was really a walk. It was called the Turkey Trot and, for the kids, it was sort of like being in a parade.

There may be times when the kids split off by age or interest and do different activities. For several years I’d write goofy plays with parts for all the cousins and they’d perform them for the adults. A few adults had cameo parts. One play was a take-off on Cinderella. The two wicked step-sisters were named Nauseanna and Euthanasia. Our cast of cousins for these plays dwindled as the years went on, as the older kids got too “cool” to perform. But no matter who acted and who watched, it was always big fun.

There may be a time when a child on the spectrum needs to be alone for a while. That’s okay. But design activities to be inclusive and have the kids interact with each other as much as possible. Video games where kids can play together or take turns are better than “shut yourself off in your own world” games. Always provide adult supervision where it’s needed.

It’s good to follow this maxim for a child on the spectrum: prepare your child for the world and prepare the world for your child. Talk to your kids before the event and let them know what’s expected of them. Keep those expectations within the limits of their abilities. As far as preparing the world for your child, you need to determine what to tell the other adults who’ll be there about your child’s strengths and challenges. You may want them to tell their kids about your child’s behaviors, what to expect and the best ways to react.

For example, we recently interviewed several families in connection with an upcoming video for siblings of children on the autism spectrum. One had a little boy who would only eat a narrow range of foods. Another had a young girl who wouldn’t eat at a table, but ate her meals from a tray on the floor in front of the television.

If everyone knows beforehand that Cousin Joey is going to eat French fries for Thanksgiving dinner and that Cousin Mary is going to eat her turkey in front of the television, these “differences” can just become part of what’s normal at a meal in this extended family. Knowing what to expect and why also makes it more likely that the kids involved will be accepting of Joey at the table -- or perhaps even choose to sit and eat with Mary in the den with the TV.

The more adults and older children treat “different” behaviors as nothing to get upset or worked up about, the more likely it is that little tykes will follow suit. And, of course, you can identify potential conflicts and make arrangements to mitigate them. If you know young Cousin Butch has issues of his own and tends to bully others, you can ensure there will always be an adult present to supervise group activities and head off problems.

Of course, you never want to put your child into a situation where the deck is stacked against him and everything points to a bad experience. But if you can increase the odds of a good experience, an event may look more attractive.

Many children are much more accommodating of kids on the spectrum if they just know something about what’s going on. A little preparation can be good insurance against kids teasing or ignoring someone acting different. And, of course, sometimes family members are just naturally nice.
I remember seeing my son, who has Asperger Syndrome, dancing with some of his cousins at a family wedding. It was great to see how gracious and accepting they were, and how much fun my son was having.

Finding ways to make family events a positive experience for everyone can help a child on the spectrum form lasting relationships. Not every cousin may be a candidate to be your child’s playmate for a day or a friend for life, but having fun together gives those bonds a chance to form.
Great family gatherings aren’t just magic for a day. They give kids on the spectrum an opportunity to be with people who have a built-in reason to see past their challenges, celebrate their strengths, and provide positive encouragement throughout their lives.

ABOUT THE AUTHOR -- Dan Coulter is the writer/producer of a series of videos, titled “Intricate Minds,” that help students understand and accept classmates with Asperger Syndrome and autism. You can find more articles on his website:

November 16, 2011

The Pickiest Of Eaters: Part 3

The following is written by Bonnie Marquis, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Bonnie concludes her series on supporting individuals with ASD who can be described as picky eaters.

If you have made it through parts one and two you should have a reasonable understanding of both why individuals on the spectrum are prone to being picky eaters and how such behaviors can easily be reinforced (meaning we may unintentionally make them more likely to occur).

But what you really want to know is WHAT to do about it! Strategies generally fall into two basic categories: (1) removing the power struggles and (2) increasing motivation to try new foods. No single strategy by itself is likely to be dramatically effective but in combination and with persistence, real gains should be seen over time.

How will you know?

Before you try any of these strategies, make a list of all the acceptable foods that are typically eaten by the picky eater. NOTE: The shorter this list the more difficult your task – if it is less than five foods from all categories you will likely need professional help and support.
Any time a new food is tried add it to the list, along with the date of your success. “Tried” should be defined – does that mean he has taken a bite and swallowed it? For some, it could be smelling and licking a new food. The definition is up to you and will depend on the characteristics of the picky eater. The rate of your success will depend on a variety of factors as well, from how much access you are willing to give (or deny) to the preferred foods, to the individual’s temperament and the consistency of your approach. No single method or timeline fits everyone and you should anticipate the need to make adjustments along the way.
Ideally you should not be tackling this issue alone. A team of professionals including occupational therapists, speech therapists and nutritionists working together is the best recipe for success. Keep in mind the strategies here are behavioral, and if oral motor or sensory issues are major contributing factors,(i.e. lots of gagging, only tolerates one or two textures) they must be addressed with therapies and exercises to develop the necessary skills and desensitization for swallowing a variety of foods. But if you do not have access to those resources and your picky eater can eat and swallow a variety of textures, you stand a good chance of success with the following strategies:

Increasing motivation: There are many strategies that can be helpful in this area and they should be carefully selected and implemented based on your own situation. Not every strategy will be right for you or the picky eater. Much depends on your own eating habits and life style, as well as the age and level of functioning of the picky eater.

• Involve the person as much as possible:
~ Invite the picky eater to help select the menu/parts of the meal to be served
~ Have the person help in preparing the meal as much as possible – from washing & ripping lettuce (even if they won’t eat it) to adding/pouring ingredients or simply stirring.
~ Consider growing some vegetables – even a patio garden – to show where food comes from.
~ Involve them in selecting foods at the grocery store –consider very short trips with only a few items if their tolerance for this is low – or in season try a farmer’s market if there is one in your area.

However you choose to involve your picky eater, doing so will help them be more comfortable with different foods, help them predict what will be on the table and, and combined with other strategies this will help them be more comfortable trying different foods.

• Model Eating and Enjoying New Foods: make an effort to try new foods and praise the family members who do so as well. Prepare foods several different ways and have a ‘taste test’ and vote for favorites. For example try a new vegetable and serve it raw, steamed and roasted and see what people think. If you cannot get it past your picky eater’s lips ask for his opinion on the smell. Or maybe he can record everyone else’s responses and declare the ‘winner.’ Involvement is the key.

• Limit Grazing: This is a common habit among picky eaters and seems to be a “Which came first” scenario. As parents we let them graze because they do not eat very much, but because we let them graze (or sip on milk and juice all day) they never come to a meal all that hungry. And if they are not all that hungry you can be sure it will be that much more difficult to get them to eat anything other than their most preferred food items.

• Play with the Presentation: People on the spectrum are very visual and may be more motivated to eat foods that are visually more appealing. Or, they may respond to foods that are ‘organized and separated’ and like foods that are presented on divided plates or lined up in an ice cube tray! There are endless possibilities to make the presentation fun and appealing – but know your eater! Making a mouse out of your pancake or putting a face on the sandwich might be appealing to some, but could upset another person since it goes against the ‘rules’ for how foods are supposed to look. And this type of strategy might work for young eaters. It may not be effective for mid-elementary age and beyond.

• Make the Experience Predictable: Have a regular routine, place, and schedule for eating. Also give information about what a new food may be like might. You might need to teach the person descriptive words like sweet, salty, savory, crunchy, creamy etc. so that you can describe new and unfamiliar foods. Make comparisons to preferred foods but with added information of how they might be different. “These are sweet potato fries, kind of like French fries but softer and sweeter. They also have lots of vitamin A and are good for your eyes.” If the person has trouble with lots of verbal information limit it and try showing it visually (maybe develop a visual for each of the taste descriptors).

• First/Then – this is an invaluable strategy for many tasks. Related to eating, we all probably remember being told ‘if you don’t eat your dinner you won’t get dessert!’ And while a range of experts shudder at this technique for fear that it teaches children to value sweets over healthy foods, it can be applied without overly stressing that idea. And here, the preferred food just might be chicken nuggets! If needed, the concept can be represented visually:



For these strategies to be effective, however, you need to combine them with the concept of removing the power struggle. You are not forcing (begging or bribing) the person to do or eat anything. But IF they want the preferred food, they will need to at least TRY the non-preferred food first. The choice is theirs and you need not engage them about it any further. The difference with this and no dessert is that no one worries about you if you don’t get dessert. When the picky eater chooses not to try a new food and would rather go hungry, this naturally creates fear and concern (see more on this below). To deal with this initial likelihood you may want to have other, more ‘neutral’ foods available. Neutral foods would be those that are not highly preferred but tolerated (at least sometimes) and hopefully with some nutritional value (peanut butter sandwich or yogurt for example). Know your own limits in what you can handle. But also know the more often you offer neutral foods, the longer it may take to expand the diet. As stated above, anticipate the need to make adjustments based on the needs of everyone and the success, or lack thereof, which you are seeing (based on the list you are keeping).

Removing the Power Struggles: As stated previously, it is only natural to want to control what you eat. The more you feel as if someone is trying to control you, the more you may resist. Maintaining control also helps to reduce anxiety. Removing the power struggle allows the person to maintain some control and you need to set up choices that you can live with no matter what the picky eater decides. You should commit yourself to no longer plead with the person to eat any particular food but stand firm in your expectations of what should be eaten, and in what quantity, to gain access to the highly preferred food. Perhaps a single taste of a totally new food will be enough as that is a huge step. But perhaps after multiple exposures, eating 4 baby carrots (which you are confident he has the skill to chew and swallow) is what is expected. This expectation should be made clear from the start of the meal and is highly individualized. Don’t make the First-food such a challenge that the person cannot achieve success. But also don’t be so worried about hunger or tantrums that you do not stretch the range of foods you expect to be tried.

If the person chooses not to eat, you may need to show indifference, and this may require some acting skills on your part. If whining and tantrums have been effective for this person in the past you can expect he/she will try this (and at an increased intensity) so you should have a plan of how to respond. Ignoring it while making sure everyone and everything is as safe as possible is generally the most effective approach at this stage. But again it is important not to engage with the person during the tantrum as the attention itself can be very reinforcing. If the person refuses to eat stay calm and simply remove the food and offer it again at the next meal/snack time. It should however be fresh or still palatable, the idea is not to punish but to stand firm in your expectations make the person realize healthy foods must be eaten and eating the same foods or only one food is not healthy (convey this in a social story – see below). If you remain calm and persistent the person will realize the behavior (whining or tantrums) will no longer result in the desired food or attention. It is up to him if he wants eats what is offered. There is no power struggle because you have removed it. He may not be happy with his choices but as the care provider you are putting their health and their best interest before their preferences.

Social Story: A social story that gives plenty of perspective for the picky eater may be very helpful. You want them to know why they need to eat new foods and that although different and perhaps scary; they will get used to it and may eventually grow to like the new foods. The social story, as always, should be individualized and as positive as possible. Many resources are available on the internet for examples that you can then tailor to meet your individual needs. Reviewing the story right before meals may make this strategy more effective.

Going Hungry: You should be prepared for the person to be willing to go hungry. This is the most difficult aspect of the entire process and it can strike a parent right at the heart of what they feel is a critical part of a loving and nurturing relationship. And although allowing the person to go hungry may seem like a harsh approach or a failure on your part, it is important to think of the long term consequences of persistent malnutrition and bowel problems (constipation) due to a lack of fiber and other components of a varied diet. Think of it as ‘tough love.’

Understand that the extremely strong willed may be able to go a day or so without food, and such a situation MUST have the direct support and guidance of a professional to ensure the health and safety of the picky eater. In such extreme cases it is vital that the person remain well hydrated and this approach may need to be implemented at a specialized eating clinic so that ongoing observation and support can be provided.

But if the person is drinking plenty of fluids (water is preferable as milk and juice can be ‘filling’) you can try the first/then approach (again with carefully selected foods with high chance of success) and use your judgment about how to define “try” and how strictly to adhere to the concept as well as what neutral foods to offer and when. For example, perhaps the picky eater will eat a relatively substantial breakfast, so you apply the above strategies at lunch and dinner. By dinner the person should be hungry enough to really be willing to try that new food in order to gain access to those chicken nuggets (if you have not given in and provided preferred snacks). “Hunger makes the best gravy” and at that stage those carrots just might taste pretty good. But what if its dinner time and nothing has been eaten since breakfast and he still won’t budge? This is where it gets tricky. Hopefully they’ve been drinking fluids (water or diluted juice) and you might simply offer some milk along with the stated choices. Or, offer a neutral food if there is one with some nutritional value. If he is so picky that there is nothing else to offer other than a highly preferred, nutritionally void item, (like crackers or chips) then he is a prime candidate for professional intervention. Or if you fail to make any progress because he is always having a filling neutral item to ‘fall back on’ you may need to limit the neutral offerings as well.

Again, tantrums and meltdowns will likely occur over this and other issues if the person is hungry. Nobody handles frustration very well when they are hungry and you can expect some significant challenges to occur. With this in mind, schedule your life accordingly. Perhaps try this over a break and with little else planned. Above all remain calm and committed and give yourself a script if you need one. “Trying new foods is hard for you, but your body needs them to grow” (be careful of too much verbal information) or show the social story once the person is calm. In between meals try and offer a great deal of positive love and interaction.

No two people are the same and you may find that your picky eater is a little more willing to try new foods if he is not so hungry, (as this makes them too grouchy and negative) so it is important to know the person and tweak the strategies to meet everyone’s needs. And be patient. Change will not happen overnight. But the really difficult period should not last very long. Once you expand the diet even just a little bit, having those foods at meals and letting them decide what to eat or not will make mealtimes more pleasant for everyone. And finally, remember that this should not be a finite goal with an end number of acceptable foods in mind. Keep ‘trying new foods’ on the agenda and keep modeling the joy of new experiences, but with empathy and understanding of how to make such experiences less stressful for the person with autism.

October 28, 2011

The Pickiest Of Eaters: Part 2

The following is written by Bonnie Marquis, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Bonnie continues her series on supporting individuals with ASD who can be described as picky eaters.

Once we understand why those on the autism spectrum might have an especially narrow range of acceptable foods, we need to look at both the developmental and behavioral principles that seem to conspire against us in our efforts to expand the diet.

Looking at development, we start with the assumption that those on the spectrum, while unique and perhaps progressing at a vastly different pace , will go through many of the same stages and are more similar to their neuro-typical peers than not. Nearly all children will go through periods of “picky eating” relative to their normal preferences. This has to do with physiological as well as social development factors. Children do not grow at a steady rate, but instead they go through spurts and plateaus. This means the appetite too will fluctuate rather wildly depending on where the child is in the growth cycle. But as adults, we expect them to eat more or less the same quantity every day, more as they get older but never less! So when they don’t eat the healthy (hopefully) option set before them, parents naturally offer them more appealing foods (they must eat!) and this is the beginning of how the child shapes our behavior. Very young children quickly learn “If I just hold out long enough I don’t have to eat the veggies and I can get the good stuff!”

And from a social development perspective children will want to exert some control over their environment (it’s why we hear the "No!" from a typical two year old) A child on the spectrum may go through this somewhat later and communicate differently and perhaps with more challenging behaviors, but the drive to do this is normal and to be expected, if not exactly welcomed. And food, along with sleep and toileting, are the areas where children have the most, perhaps the only, control over their lives. And again when you combine these factors with anxiety and resistance to change, we see how easily power struggles over food can develop.

Before we move on to strategies it’s worth a brief discussion about the function of behavior.

Behavior always communicate something, and often it's used to communicate a desire to get something or avoid something. Those ‘somethings’ are often cataloged into three main categories: attention needs, sensory needs, and tangible needs. But in the real world behavior is never ‘simple’ and to complicate things we know one behavior can fill many functions. Using picky eating dynamics, let’s put this into context:

 At meal time, Tim is offered baked chicken and roasted potatoes and green beans (his preferred foods are French fries and chicken nuggets) He makes a face and refuses to eat the food (avoiding sensory -different taste & texture ). You beg and plead and explain they are his favorite foods they just look a little different, " . . . please please please just TRY it!" ( gains attention). He whines and cries until you give him his preferred foods because you know he is hungry (gains a tangible). In this scenario his behaviors have helped to fill multiple functions and we have reinforced all these behaviors making it more likely he will do this again at the next meal.

If you are reading this, chances are a similar scene has repeated itself many times, or perhaps you skip it all together and only bother to serve what you know will be acceptable. Given all the other multiple challenges faced by those caring for a person on the spectrum the last thing they need is a challenge that can easily be avoided (see how we all avoid unpleasant experiences).

The problem, however, is that by overly accommodating these narrow food preferences, we actually make them worse. Eight foods become six, which then becomes three and soon your whole world revolves around maintaining a supply of these few foods. This impacts not only their nutritional wellbeing (even if they take supplements they still need fiber and other phytonutrients only found in whole foods) but just as importantly, the social wellbeing of the whole family. As stated in part one, eating is at the heart of nearly every social activity and there is not going to be chicken nuggets at every one of them. Such behaviors are not helping the person develop typical relationships or contributing to an improved quality of life.

Tackling this issue is not easy and will take time, but it is possible to greatly expand the diet of even the most entrenched “ picky eaters”. Change will not happen overnight and in the beginning it is more about changing our behavior and our responses than anything else. But six foods may become seven, then eight, then twelve. And while the person may never be an adventurous eater, power struggles will cease and quality of life can improve dramatically.

Remember however, if the person on the spectrum has extreme oral sensitivities or challenges with chewing and swallowing teaming with an experienced Occupational and/or speech therapist in conjunction with behavior modifications is essential. Either way, some real work lies ahead for everyone, but the payoff can be enormous for all involved.

October 25, 2011

Challenges To Providing Services To Adults With ASD

As many folks recognize, services are scarce for adults with ASD in the US. And services that exist do so without legal mandates.

Click the following link to view the PBS News Hour segment: "Autism Now: For Adults With Autism, Few Support Options Past Age 21." Dr. Peter Gerhardt is featured in the discussion, and gives insight into the challenges that exist for adults on the spectrum and their family members.

October 10, 2011

The Pickiest Of Eaters: Part 1

The following is written by Bonnie Marquis, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Bonnie will be writing a series of posts on supporting individuals with ASD who can be described as picky eaters.

We all know that kids can be notoriously picky in their eating habits, but if you have a child on the spectrum chances are you just roll your eyes when you hear others complaining about their neuro-typical child and their eating habits.

They. Have. No. Idea!

And while many kids can be called ‘picky eaters’ this challenge can be particularly vexing for the parent of a child on the spectrum. Beyond just not eating vegetables, some have such a narrow range of acceptable foods that parents can count them on one hand. And for many even just a change in brand can cause a normally favored food to be rejected outright.

While the nutritional problems this presents may be obvious, there are also social implications which can actually have a significant impact on the child and family’s overall quality of life. As most of us can attest, eating is at the heart of nearly every social activity.

Before we can expand food tolerances it’s helpful to understand a few of the characteristics common among people with autism, as well as some basic behavioral principles so we can learn how our own actions might actually be contributing to the issue.

People on the spectrum are notorious for being resistant to change and find predicting events very difficult. On the flip side, they find great comfort in known routines and activities. Trying new foods is hard – it involves change and removes the security of the familiar. Anxiety can build to the point where the person gags or worse. This can be frightening to everyone and common sense tells us to avoid this if at all possible.

Most of us are also well aware of the sensory challenges faced by people on the spectrum – extreme sensitivity to textures AND tastes can compound the challenges of the new and different. And we often end up back to the gagging, particularly if the person has never developed the oral motor muscles necessary to successfully navigate chewing and swallowing various textures. If you find yourself in this position simple behavioral strategies are not likely to be effective and it will take a coordinated effort with occupational and speech therapists in conjunction with behavioral changes in order to make any real progress.

And while a small number of families may be in this position, most situations respond quite well to basic behavioral strategies once the general principles are well understood. For many on the spectrum, what began in the early toddler years as a sensory issue has developed over the years into a predominantly behavioral one. And again, when we return to the common characteristics we can see why and how a person would refuse new and different foods. But how do we change behaviors?

As usual, it really starts by changing our own.

Over the next few months we’ll explore strategies to expand the range of acceptable foods, reduce or eliminate the power struggles and move toward greater meal time harmony.

September 23, 2011

Preparing For The IEP

The IEP has two purposes: (1) to establish goals, and (2) to state appropriate student service needs for the school year. Preparing for the IEP is integral to the process. Suggestions for preparing for the meeting include:

1. Review last year's IEP. Review the plan from the previous year, and highlight areas of success and areas of concern. Generate a list of questions from the review, including questions about the success of particular goals, and whether those goals and objectives remain appropriate.

2. Know the legal rights guaranteed to students being educated under an IEP process. Be familiar with IDEA 2004, and take a copy with you to the IEP meeting. If you do not understand certain policies, ask. Your school district is required by IDEA to give you copies of special education statutes, regulations and policies.

3. Update your advocacy notebook. Have a notebook that maintains student evaluations, old IEP's and correspondence with school personnel, doctors' evaluations, related service providers evaluations or teachers’ notes. Review all prior assessments and evaluations. Maintain a written list of dates, names and phone calls and meeting dates. Follow up any verbal agreement with a letter confirming your understanding of the agreement. Include in the notebook a summary of the student’s strengths, interests, challenges, and abilities, and share that information with the team.

4. Organize “new information” that may be beneficial. Gather and organize any new information that supports the ideal IEP for a particular student, including: teacher statements, independent assessments, statements from medical or clinical professionals, etc. Be prepared to show the IEP team any research or documentation about new strategies you would like to discuss. Prepare information about various programs within your school district (or outside the district) that may be appropriate for the student. This information may be given to the team in writing several weeks before the IEP meeting to ensure enough time exists for team members to review the material.

5. Create a To-Do list of issues that need to be discussed and bring it with you to your meeting.

6. Invite appropriate medical or clinical professionals involved with the student to the IEP meeting. If key people cannot attend the IEP meeting, ask them to prepare a statement to submit at the meeting.

7. Plan for stress. IEP meetings can sometimes be stressful. Plan for and take necessary breaks during long meetings. If necessary, bring a person with you to the meeting to provide emotional support. If the meeting seems to have lost focus or has become too emotionally intense, suggest the meeting be tabled and set a date to reconvene.

8. Request written minutes. Ask that a copy of the minutes and a copy of the draft IEP form be provided to you at the end of the meeting.

9. Follow the understood chain of command. Discuss concerns or issues with the student’s teacher first, and allow time for the teacher to address those concerns and work toward a resolution. If an issue cannot be resolved, find out who has the authority to make the necessary changes and move up, level by level.

10. Make requests in writing, including requests for assessments, IEP meetings, more detailed correspondence, and related services. It’s best to first request an assessment that supports the need for a related service rather than insisting on obtaining the service itself. A certified or licensed professional determines the need for a particular related service, and the assessment is the avenue through which that recommendation is made.

11. Be sure to plan for transition services and extended year services when appropriate. Students at 16 years of age should have Transition Planning evaluations completed and presented to the IEP team at the annual meeting. Ensure all requests for extended school year are provided to the school in writing.

12. Be thoughtful when signing the IEP. If you disagree, write a note below or to the side of your name explaining that your signature does not represent your approval of, or agreement with, the IDP.

Information developed from a variety of sources, including Wrights Law, training provided by attorney Reed Martin, and anecdotal experience.