I’m Bella Tommey, 17-year-old sister to Billy, who was diagnosed with severe autism at the age of two and a half. Billy lost all speech after his diagnosis, and we lost any kind of communication we had previously built. It was very difficult for me when I was younger, but as Billy has grown—he’s now nearly 16—it has become so much easier. He is a totally different brother to be around, he talks, communicates and a lot of the time I forget he even has autism! Billy is very skilled on the computer, PlayStation, and related activities, and he also has a great many other skills that his fabulous school is encouraging him to develop.

Billy is one of millions of young adults with autism around the world who can put something back into society if given the chance. Last year, I set up a “pop-up café” in London to prove that this is the case—it was a huge success, and all who came remarked on not only what a great day it had been but, most importantly, how they had no idea that individuals with autism had so many skills and so much potential. I’m extremely excited to be working with Imogen Wakefield in taking this campaign to the U.S., specifically to Austin, Texas.

I’m Imogen Wakefield, and I’m also 17 years old. I’ve always had great empathy with children and enjoy working with them in my out-of-school jobs; through my parents’ work, I’ve met a great many children and adults with autism. To see so much potential wasted because people with autism and Asperger’s aren’t being given a chance—mainly due to lack of an awareness of their potential, and lack of understanding when it comes to the challenges they face—is heartbreaking. After spending the summer in London with Bella and her brother Billy, I was inspired to bring the Give Autism A Chance campaign to my hometown of Austin, Texas. Our answer to Bella and Billy’s pop-up café is a day at the ever-so-Austin Spider House Café on West 29th Street (check it out at www.spiderhousecafe.com). We’re expecting some celebrity appearances, tremendous local support, TV coverage and much, much more!

We’re working with other autism organizations to make this day very special and prove our very important point. We have support from so many autism groups, individuals, celebrities and families living with autism, and hope to see as many people as possible at the Café for a Day in Austin. The Autism File will be covering our story and taking photographs for a future issue, and the Autism Media Channel will be making a film about the day. We feel it’s time to “up the game,” and together really shout out about people with autism and Asperger’s and the great potential that they have if given the opportunity.

Please join us at the Spider House Patio Bar and Café, Austin, Texas on April 22, 2012. For more information on Café for a Day, visit www.theautismtrust.com or www.theautismtrustusa.org.

See you there! Bella and Imogen

There is no dispute that the number of vaccines given to infants and young children has risen dramatically over the past few decades, as has the rate of autism diagnoses among children in the U.S.[i] [ii] During the past 25 years, the number of vaccines given to children by the age of six has more than doubled, with today’s schedule requiring that 48 doses of 14 different vaccines be given to kids before they reach the first grade. [iii] The Centers for Disease Control and Prevention (CDC) currently puts autism rates at one in 110, and the American Academy of Pediatrics reported in 2004 that a developmental disorder and/or behavioral problem now affects one in six children in this country.[iv] Federal health agencies generally cite coincidence to explain autism symptoms that often appear following the administration of vaccines. Many parents and researchers are skeptical of this explanation.

Concerns aren’t limited to the number of vaccines given to infants (whose blood-brain barrier isn’t fully developed); parents are also questioning the lack of safety testing for long-term cumulative effects of vaccines, and for the effects of vaccines given in combination.  Autism advocates often point out that other areas of medicine preclude combining different chemicals and medications without the benefit of safety testing for potentially harmful synergistic effects.  Yet some young children receive as many as 12 vaccines at the same “well baby” doctor visit [v] despite the lack of sufficient research to confirm the safety of grouping immunizations together in this manner.

In addition to the possibility of combined and cumulative adverse health effects from the current childhood vaccination schedule, many parents are concerned about toxic vaccine components such as aluminum, a known neurotoxin, used as an adjuvant in several vaccines currently on the market.  A recent study, Aluminum Vaccine Adjuvants: Are they Safe?,[vi] examined the risks to human health posed by exposure to aluminum, concluding that, “The continued use of aluminum adjuvants in various vaccines for children as well as the general public may be of significant concern.”

Parents wary of the present childhood vaccine schedule need to be diligent in researching potential health implications and carefully weigh both the risks and the benefits of the current immunization policy.  Some health care providers are open to adjusting the recommended schedule for children, implementing a “lower and slower” approach, especially if there are immune system irregularities within the health history of the family.

For more information on a possible vaccine/autism link, see The Case is Not Closed on Vaccines & Autism by Robert J. Krakow (Autism File Issue 30, pp. 28—31).

Those diagnosed with autism often have difficulties in processing not only the obvious five senses of sight, sound, smell, touch, and taste, but also with other senses such as proprioception (one’s perception of the body’s movement and spatial orientation). Those affected by SI dysfunction may have unusual reactions to touching and being touched (tactile defensiveness), or to movements of the body. Many parents describe their children with autism as being either hyper- or hypo-sensitive to sensory input, with some children seemingly impervious to either cold or heat, wanting to wear skimpy clothing outdoors in the dead of winter or a parka in the dog days of summer.

Many environments outside the home can be particularly problematic for individuals with sensory integration issues. Grocery stores, for example, with their bright lighting, vivid product colors, high noise levels, and carts zipping past in different directions may cause “sensory overload” in people with autism. Such problems with sensory integration have been linked to impaired communication skills and negative behaviors as well. Parents report that the majority of their children’s meltdown episodes occur in grocery stores and similar noisy, bright environments.

When parents or teachers begin to suspect problems with sensory integration, the first action taken is usually consulting with an occupational therapist (OT) who then evaluates the child for problems with sensory processing. If occupational therapy is recommended following the evaluation, this needs to be added into the child’s Individualized Education Plan at school.

There are also many ways that parents can contribute to their child’s occupational therapy for SI issues at home with common household items. Here are some ideas to get you started:

• Make a “fidgit” toy by filling a balloon with sand. Tightly tie the balloon when full.
• A weighted vest can be made from an old shirt or vest by filling the pockets and hems with small heavy objects such as curtain weights.
• To make a weighted pencil, filter through old boxes of nuts and bolts to find two or three that will fit the barrel of a pencil and then glue them on.
• Blow bubbles with non-toxic bubble solution. Make sure your child actually blows bubbles through the wand vs. merely waving it around.
• Spray non-toxic shaving cream on a shower wall or bathtub surface and let your child “finger paint” with it.

Do-It-Yourself therapy toys and activities such as these provide a practical alternative to purchasing expensive retail therapy items. Use your imagination and consult with your OT to come up with other activities for your child to expand his sensory therapy—all while having fun in the process!

For continual up-to-date information on all autism-relevant topics, subscribe to the Autism File magazine today. Now published six times per year, our expert contributors make your life easier by ensuring that each issue provides real solutions to real challenges—right now.

Expenses add up quickly considering that many individuals with autism are on special diets, have more health care expenses with the involvement of medical specialists, and often take a multitude of supplements, many of which are quite costly.  Additionally, many families seek private education when the public school system can’t meet the needs of their children diagnosed with autism.   One-time legal costs can also be considerable for families opting to seek guardianship on behalf of their children when they become adults.

So, how can families learn to stretch their dollars and become proficient at saving money?  Looking at individual expense areas and matching money-saving tactics to them can be helpful in getting started.  For example, biomedical interventions are becoming increasingly popular among parents in treating their children with autism, but typically such costs aren’t covered by insurance. Often, parents can expand insurance coverage by making sure that medical coding reflects what specifically is being treated, i.e. gastroenteritis vs. the vastly wider code for “autism.”

Whenever starting a new supplement, it’s a good idea to first purchase a sample size that some manufacturers make available to customers.  The cost for the sample size is considerably less expensive and if the supplement proves unhelpful or isn’t well-tolerated, the price for the full size version hasn’t been wasted. Additionally, some insurance providers cover the costs of supplements from compounding pharmacies if prescribed by a physician, so check with your provider to see if this is the case.

For other health care expenses not covered by insurance, it’s worth looking into Medicaid and state waiver programs that sometimes can assist.  These programs vary somewhat from state to state, but most will cover co-pays for primary care provider visits, prescriptions, and some lab testing.

Most importantly, save all receipts relating to the health of your child—even receipts for food items if your child is on a special diet on the advice of a physician.  The difference between the cost of a regular loaf of bread at the grocery store and a gluten-free loaf from the health food store can be $2.00 or even more.  Over the course of a year, the amount of money spent to maintain a GF/CF diet can be substantial—and the difference you pay from “normal” diet purchases can be written off if you retain the receipts and can document the diet recommendation from your child’s health care provider.

If you prepare your child’s special diet meals from scratch, you’ll also save considerably by avoiding the often extremely expensive ready-made health food store items.  Again, save the receipts from anything purchased to prepare foods for special diets as these will come in handy when preparing your tax return.

While it takes some organizational skills and diligence in keeping track of autism-relevant receipts, it can make a huge difference for families at tax time.  For more strategies to make the most of applicable tax deductions to save you even more money, don’t miss our February/March issue available on January 3, 2013.

Many times you feel as if every little thing you say or do sets off different emotions with your sibling, but I have learned easy ways to avoid meltdowns as much as possible and help my brother enjoy interacting with me, his family and friends. Sometimes it can be as simple as letting him decompress after a long day at school and saying everything quietly and nicely, rather than yelling with friends or other siblings. (Which I sometimes do on accident and believe me I almost always regret it.) I often try to involve my brother in activities we can enjoy together like when he is upset I turn on some music that he likes and we dance. When he’s already happy we play games such as chasing him around until we get tired of running in circles, or playing hide and seek.

I don’t know if any of you out there have the same problems I do but to me one of the hardest things to do is explain to someone uneducated about autism why your sibling acts the way he or she does. I get many questions like, “Why does your brother flap his arms and walk on his toes?” or “Why won’t your brother talk?” Well, I could go into great detail and bore them with the whole “When he was little he was sick and the doctors gave him too many vaccines when his immune system was down.” But I usually keep it simple with, “My brother is recovering from autism, which makes him more sensitive to things we simply brush off and aren’t affected by.”  (Such as an ambulance’s siren sounding, or a train blowing its horn in the distance).

If you have a sibling with autism, you know how much of a pain and a blessing they can be at the same time. And it takes a while but as you go you learn what your sibling does is normal to them and you learn the things they do when they are hungry or tired or sick.

Some things you can do when your sibling is upset would be just trying to avoid whatever is making them that way. Like if your sibling is upset by loud noises, keep loud movies or songs turned down. A good way to keep your sibling happy after a tantrum is doing whatever they like to do no matter how boring it is to you, like playing hide and seek when they scream out where they are going to hide before they go hide there.

I hope some of this is useful to those siblings of children with autism. I hope some of the things I use to help with my brother help with your situations too. Don’t be embarrassed when your sibling is “different” in public. I love my brother and it’s just how he is. I hope that others are just as proud and supportive of their siblings with autism as I am of my brother.

There are now thousands of apps for iPad and other devices to address a vast array of specific deficits in communication, from identifying different feelings to improving social skills.  Prices vary quite a bit from one app to another depending on features, quality of graphics, ability to customize, etc.  Here are a few apps getting mostly positive online reviews from parents and educators working with children with autism:

• Grace – Picture Exchange for Non-Verbal People By Steven Troughton-Smith, this app is especially popular for transitioning from a traditional Picture Exchange Communication System (PECS) to touch-screen technology, and is recommended for children with autism, teachers, support staff, and family members. $37.99
• iCommunicate From Grembe Inc., iCommunicate allows the customizable creation of visual schedules, storyboards, communication boards, flash cards, choice boards, speech cards, and more. Reviewers cite excellent customer support and ease of navigation among the pros of iCommunicate.  $49.99
• All About Me By i Get It, LLC, All About Me offers picture and text support to individuals learning their personal information. Icons representing the child’s name, address, birthday, home address, telephone number, family members’ names, pets, school, friends, favorite items, things I like, places I go and computer favorites are all included. These icons can be individualized with written text, audio and personal photos for added visual support. $.99
• TapToTalk™ By Assistyx LLC, TapToTalk turns an iPhone, iPad or iPod touch into an augmentative and alternative communication device. TapToTalk makes communication fun, like another “game” on this cool device. Just tap a picture and TapToTalk speaks. Each picture can lead to another screen of pictures.  TapToTalk displays a page of pictures on the screen. When you tap a picture, TapToTalk plays a word or sentence and displays another page of pictures. Each of those pictures can lead to another page, and so on, up to ten levels deep.  FREE
• First Then Visual Schedule By Good Karma Applications, Inc., First-Then Visual Schedule is designed for caregivers to provide positive behavior support. For individuals with communication needs, developmental delays, autism or those who benefit from a structured environment; visual schedules serve to increase independence and lower anxiety during transitions through different activities. The app is fully customizable and uses your own photos or those from the built-in internet image search feature.  $9.99.
• Math Magic By Anusen Inc., Math Magic uses a combination of your choice of vibrant colors, simple interface and a reward system of stars to encourage and teach kids between the ages of 3 and 8. Easy to use, the child simply has to tap on an answer to solve the problem. Whether they get the answer right or not, a real voice expresses appreciation for the child choosing a response. Once the correct answer has been achieved, just shake your iPhone or iPod Touch and a new math problem will appear. Five successful answers results in a colored star as a reward. Math Magic lets you adjust the levels to customize them for your child. $.99

The chance for improved communication abilities is looking brighter for individuals with autism as a growing number of parents and teachers can attest. If you’re looking into iPad technology for your child or student with autism, keep in mind that updates are frequently made to apps and prices fluctuate depending on the versions purchased.  For more information on the benefits if iPad technology, go to our blog section post “Autism Inside-out: Until he speaks,” by Kim Linderman. www.autismfile.com/blog/autism-inside-out-until-he-speaks .

Other symptoms often associated with autism include sensory processing challenges which may in part provide treatment options for feeding problems. According to a report from 2008, “Given these distortions in sensory processing, and depending on the number and type of sensory stressors in the environment, the impact on feeding can be pervasive.”[ii] An evaluation for sensory processing dysregulation by an occupational therapist will reveal whether your child can benefit from therapies to improve sensory issues which may then have a positive impact on problems with eating behaviors related to texture and other sensory factors.

The same paper confirms what a growing number of other researchers and parents have been reporting for years regarding children diagnosed with autism and gastrointestinal dysfunction, “GI disorders encompass a constellation of problems, including gastroesophageal reflux disease (GERD) and constipation, diarrhea, or other symptoms resulting from food allergies.” [iii] Obtaining appropriate clinical investigation of and treatment for gastrointestinal dysfunction and food allergies can therefore be crucial for many individuals with autism and feeding problems.

In addition to sensory and GI issues, several other underlying medical conditions often found in children with autism can have a bearing on eating behaviors.  These include other allergies and chemical sensitivities, nutritional deficiencies, impaired detoxification, and viral infections.[iv] Once any additional underlying medical conditions have been either ruled out or accurately diagnosed with appropriate treatments in place, parents can begin to implement strategies and protocols at home that can greatly improve feeding issues in their children with autism.

Where can you start if your child has problems with eating behaviors?  Being a “picky eater” comes with the territory so broadening the range of foods that your child will accept is a good place from which to launch a plan.  Consult with a nutritionist to help you devise a program customized to most effectively target your child’s nutritional deficits.

One of the most important things to keep in mind when starting any nutritional program is that the effort ideally will involve the support and commitment of the entire family.  Make sure siblings and others living in the home have an understanding of the seriousness of feeding issues and the health benefits of improving your child’s eating behaviors.  The approach to widen your child’s meal time repertoire must be intensive as it will be in operation for every meal, every day.

Here are some guiding principles that may be effective as you implement your at-home nutritional-enhancement plan:

• Schedule specific meal times. Stick to pre-set times as routine is key.
• No grazing.  Eliminate snacks and grazing to encourage a feeling of hunger at meal times.
• Introduce new foods slowly.  Even touching a new food to his lips is an important step for your child.
• Offer praise for each small gain.  Verbal reinforcement will encourage your child to move forward as new foods are introduced.
• Wait it out.  Be prepared for your child to tantrum or engage in other negative behaviors as new foods are introduced. Initial resistance may be strong but stick with the plan.

For additional practical strategies to make the most of your child’s nutritional intake, see the Autism File article “Help for Picky Eaters” by Missy Olive, PhD, BCBA-D (Issue 40).

The first go-to alternative treatment for autism often involves dietary intervention.  One of the most popular options is the Gluten-Free/Casein-Free (GF/CF) diet which removes wheat- and dairy-containing foods and supplements.  It is thought that incomplete digestion of the proteins found in gluten and casein can produce or magnify the symptoms of autism and that eliminating them from the diet can yield significant improvement in some individuals.  Other special diets include the Specific Carbohydrate Diet (SCD), which eliminates hard-to-digest complex carbohydrates that feed harmful bacteria in the digestive system, and the Feingold diet which removes artificial colors and flavors and other synthetic additives from the diet.  Implementing one of these diets—and there are many others getting favorable reviews—is well worth the extra effort required to see if your child will be a successful responder. After all, gastrointestinal disturbances are one of the most frequently reported symptoms of individuals diagnosed with autism, and addressing GI distress through diet is a logical avenue to explore.

For children who don’t respond favorably to dietary interventions, or have recovered from GI symptoms enough to move on, keep in mind that a balanced diet of nutritional foods—organic whenever possible—is extremely important in achieving optimal health. Ensure that your child gets a vitamin- and mineral-rich diet with plenty of fresh fruits and vegetables as well as protein and whole grains. Avoid processed foods and sugary treats as well as artificial additives, and try to make sure your child eats a “rainbow of foods” each day.

In addition to dietary interventions, there are now myriad alternative treatment options. Below are just a few of the more popular protocols parents are researching and implementing for their children diagnosed with autism:

• Vitamin B-12 Supplementation. Reportedly, many people with autism are deficient in vitamin B12 which is critical for proper brain and nervous system function, and is also essential for the metabolism of fats and carbohydrates and the synthesis of proteins.
• Essential Fatty Acids. It is currently thought that inflammation may be an issue for some people with autism and essential fatty acids may be beneficial.  Omega-3s in particular have shown to have anti-inflammatory properties, and additionally are crucial for the health and development of the brain.
• Anti-Fungal Treatment. Parents and practitioners often report yeast overgrowth in people with autism and indicate that treating with an anti-fungal alleviates some symptoms associated with autism.
• Detoxification of Heavy Metals. As toxic metals are ubiquitous in the environment, it is impossible to completely avoid exposure to toxins such as mercury and lead. People with autism may have a decreased ability to eliminate toxins from their systems providing the rationale for detoxification including the use of chelation therapy.
• Melatonin. Sleep issues are common in people diagnosed with autism.  Research suggests that melatonin is safe and effective in establishing improved sleep patterns in some ASD individuals.
• Hyperbaric Oxygen Therapy. The theory behind the use of hyperbaric therapy involves increasing the oxygen content of the body.  Some parents of children with autism are reporting improvement in autism symptoms following treatment in hyperbaric oxygen chambers.
• Digestive Enzymes. To assist in proper digestion, many parents add digestive enzymes to their child’s dietary regime. Supplementation with enzymes may result in a reduction of issues associated with mal-digestion including bloating and gas, cramping, diarrhea or constipation, and food intolerances.

Before beginning any treatments for autism, be sure to research your options thoroughly and consult with your child’s health care provider to assist you in implementation.  For more information on alternative autism treatments, see:  What is Autism? And What Can I Do to Help My Child with Autism? by Nancy O’Hara, MD, and Gail Szakacs, MD (Autism File, Issue 34, pp. 15—19).

Sleep disorders can impact many areas of day-to-day functioning including behavior, school performance, nutrition, physical fitness and overall health status. Additionally, earlier research by Dr. Goldman and her team found that some symptoms often associated with autism—hyperactivity, obsessive and ritualistic behaviors– worsened when sleep disturbance was a factor. [ii]

What options do families have in facilitating improved sleep habits in their children with autism? Many are understandably reluctant to implement steady doses of pharmaceuticals and instead go in search of alternate routes to encourage healthy sleep patterns.  There is a growing body of evidence to support that establishing a melatonin protocol may be a safe and effective means by which to improve sleep quality and duration in individuals with autism.

Melatonin is a hormone secreted by the pineal gland in the brain. Its functions include helping to regulate other hormones, and maintaining the body’s circadian rhythm, an important factor in determining when people fall asleep and when they wake up. A new study published last month concluded that melatonin, “…was effective in week 1 of treatment, maintained effects over several months, was well tolerated and safe, and showed improvement in sleep, behavior, and parenting stress.” [iii] As an added benefit to often financially-strapped families, melatonin is inexpensive and readily available at retail outlets and online. As with any medicine or supplement, parents should check with their child’s physician before implementing a melatonin protocol.

There are also several strategies for successful sleep habits that families can employ. As with so many other aspects of life once autism has become a factor, consistency is key. Here are some tips that may prove beneficial to the entire family in getting a good night’s sleep:

• Develop a bedtime routine. Whether it’s reading a story, having a bath, or listening to soft music, develop a schedule and stick to the same order of pre-bedtime activities each night.
• Avoid high-energy activities. Turn off the TV, video games, and avoid any other stimulating activities before bedtime.
• Set a certain time for bed every night and stick to it.  Being consistent with bedtime can help train the body to get ready for sleep.
• Prevent sensory distractions. You might consider heavy, dark draperies or shades, and tend to any squeaky doors or any other noises that might cause night-time waking.
• Remove potential temptations. Put away any toys or games in your child’s room that might prompt him to get out of bed.
• Establish a set wake-up time. Consistency in wake-up time is just as important as consistency in bedtime in helping to set the body’s internal clock.

Establishing good sleep habits can take considerable effort but the potential rewards are substantial.  For more information on sleep disorders and how you can help your child with autism, subscribe to the Autism File. Real Challenges.  Real Solutions.

The one thing however, that should be considered for all suffering from an ASD is their environment. Some of our children may need the GF/CF diet, some might need to chelate, while others benefit from hyperbaric oxygen therapy.  A clean and healthy environment, however, will help not only the child with autism, but every member of the family as well. Our environment makes a difference; it’s your choice whether that difference is positive or negative.

We should all be concerned about our environment, either as stewards of the earth or caregivers to our children. Being the parent of a child with an autism diagnosis myself, I can fully appreciate the fact that many of us do not have the time, energy or resources to become global environmental activists, but we can make a difference in our homes and at our dinner tables that, combined with other like-minded individuals and families, can make that “global” impact realized.

Our choice of cleaning supplies, laundry soaps and clothing are just one way we can reduce the toxic environmental impact on our children.  It’s no secret that most of our children are especially vulnerable to toxic assault, and many suffer from a decreased ability to cleanse themselves of toxins. Carcinogens, excitotoxins, allergens and irritants are just a few of the chemicals found in many household cleaning products and fabrics.

What we put on the dinner table provides one of the greatest opportunities to improve our children’s health as well as our own (moms and dads, your children benefit when you are healthy!). Putting pesticide- and herbicide- laden food into our children is analogous to putting gas in our cars but refusing to change the oil. Sure, gas will keep the car running, but only for a short time. Sooner or later, the car will stop running altogether because of the lack of maintenance.

This “maintenance” for our bodies is the nutrients and minerals found in our foods and these are sadly lacking in today’s food supply. Farmers have to increasingly add chemical fertilizers to our soil to get their crops to grow. These have no nutritional value whatsoever and are actually quite harmful. Organic, sustainable farming is not something for the commune-living hippie-types anymore. Sustainable farming allows our food to grow with the natural nutrients and minerals in the soil which are in turn taken up by the plants that end up on our dining room table.

If we continue to feed ourselves and our children food that is completely devoid of any positive nutrition, eventually the body breaks down. As we are trying, seemingly against all odds, to help our children become healthier, many of us are not giving them the tools and resources necessary to get started on the road to recovery.

An organic diet should be considered as the first step to ensuring that your child’s engine will run and be maintained correctly, thus ensuring that his or her body has the nutrients and minerals available to heal optimally. I know that organic food can be more expensive but one has to consider the bigger picture: how much are you spending on doctor co-pays, prescriptions, biomedical interventions, etc.? Are you concerned with spending an extra 25% on your grocery bill even as you are spending thousands on biomedical treatments?

Are you trying to paint the Mona Lisa on the back of a cardboard box?  Consider giving your children the proper canvas and they might just turn out to be the masterpiece you are striving for.

To read more about optimizing your family’s environment, see issue number 32 of the Autism File, “Toxic Children: How U.S. babies became born pre-polluted, and what can be done to fix this silent, insidious pandemic,” by Ken Cook.