Green Home…Healthy Kids

Posted on January 22, 2020 by admin

For over a decade, I’ve been writing about harmful chemicals in our environment and how they jeopardize our children’s health and development. We have made significant strides in identifying, controlling and eliminating many toxic exposures but there is still an overwhelming amount of harmful chemicals that go unregulated in the market place and parents continue to be concerned about their safety.

Many of these exposures start in the womb—in 2004, the Environmental Working Group identified over 287 chemicals found in umbilical cord blood, and many were listed as carcinogenic, neurotoxic, teratogenic and endocrine disrupting. These same toxic chemicals, as well as other potentially dangerous environmental exposures, can also affect and hinder development in adolescents and teens.

Puberty normally begins between the ages of 10 and 16 and can last from two to five years. During puberty, your child’s body goes through a number of metabolic and physiological changes that could intensify the effects of toxic exposures that may not be detected for years.  These exposures are also capable of triggering bouts of aggression, depression and defiant behavior making life miserable for everyone.

If you have a child who has a chronic illness or a developmental disorder you probably already know that environmental toxins can further compromise their fragile immune system and exacerbate already challenging behaviors. With their body changing and hormones racing, a child could experience even more difficulty controlling his or her emotions. All the more reason for parents to do all they can to minimize toxic exposures whenever possible. Here are a few categories to be aware of so you can make healthy changes…

Personal Care Products

Kids are vulnerable to additional exposures that come along with transitioning into the adolescent and teen years. Many popular personal care products, including cosmetics, deodorants, fragrances, hair and skin care products, are formulated using potentially harmful ingredients, some of which are known carcinogens, neurotoxins and hormone disruptors (see chart at bottom).

On average, teens use about 17 personal care products per day, which exposes them to approximately 174 chemical ingredients every day. This means your child is repeatedly absorbing a toxic chemical cocktail (see chart for ingredients to avoid).

Feminine Hygiene Products

These can contain dioxins, a by-product of the bleaching process used in the production of feminine hygiene products. According to the Environmental Protection Agency, dioxins from feminine pads and tampons can put girls and women at risk for “effects that could suppress the immune system, increase the risk of pelvic inflammatory disease, reduce fertility and interfere with fetal and childhood development.” Mothers should educate their daughters about these dangers and buy organic feminine hygiene products.

Insecticidal Hair Products

Each year between six and 12 million kids get head lice, and it’s common for parents to turn to insecticidal shampoos and treatments to eradicate them. However, most pesticide-based, over-the-counter treatments are highly toxic and have been linked to neurological and other health problems.

Non-pesticide-based remedies are a safer alternative and include mayonnaise, olive oil, essential oils, and ready-to-use products such as Cetaphil lotion and LiceMD. And don’t forget the old-fashioned approach: plenty of hair conditioner and a nit comb, repeated every week or so until your child’s hair is free of lice.

Cleaning Products

Most cleaning products contain harsh toxic chemicals that are listed as carcinogenic and can impair neurodevelopment as well as cause irritation, allergies, and asthma. These products also are a constant source of indoor air pollution—on average, indoor air is two to five times more polluted than outdoor air.

Modern Technology

In addition to chemicals found in food, personal care and cleaning products, there are other environmental exposures that most of us just haven’t paid enough attention to, partially because we are often guilty of overexposing ourselves. I’m talking about cell phones and computers.

Today’s teens are without question the beneficiaries of many of the wireless technological advances of the last decade. They may also be the first generation to grow up with almost unlimited access to cell phones and computers. Studies have suggested frequent cell phone use could increase the risk of brain tumors, migraines, and some behavioral problems in children. Last year, the World Health Organization’s International Agency for Research on Cancer (IARC) classified cell-phone radiation as “possibly carcinogenic to humans.”

There are 285 million cell phones in use in this country, and two-thirds of children over the age of seven use them. More often than not, cell phones are used for entertainment too—today’s smartphones have become a coveted social connector that enable teens to spend hours talking to friends, listening to music, browsing the Internet, playing games and even watching movies. When they aren’t talking on the phone, they often carry them around in their pockets close to their bodies where radiation can be absorbed into their tissues.

Dr. Joel M. Moskowitz, a researcher at the University of California, Berkeley, and the director of the Center for Family and Community Health at the School of Public Health, has become a prominent voice questioning current cell phone regulations. In 2010 Dr. Moskowitz wrote: “We should address this issue proactively even if we do not fully understand its magnitude. Our government has faced similar public health threats in the past. In 1965, although there was no scientific consensus about the harmful effects of cigarettes, Congress required a precautionary warning label on cigarette packages—more specific warnings were not required until 1984. Should we have waited 19 years until absolutely certain before we informed the public about these risks?”

Similar to cell phones, computers are another source of electromagnetic radiation. It may be decades before we fully realize what the cumulative effects of low-level radiation will mean for today’s generation of kids that began using cell phones and computers at such an early age, but we do have some early data to suggest that there may be some serious unintended health consequences.  Radiation emitted from both cell phones and computers have already been linked to sperm damage.

Eliminate the Threat

So how do we as parents protect our kids who are transitioning into their adolescent and teen years from environmental insults that can threaten their health and future? It’s simple—know what is in the products you purchase. From cosmetics to cell phones, spend a little time investigating the ingredients and safety of the products your kids use. Environmental exposures can be insidious and persistent. Each stage of development—pregnancy, infancy, and puberty—creates new windows of vulnerability in which the effects of exposures can result in serious health problems. Repeated exposures from a variety of products and sources can add up.

Instead of getting stressed out and feeling powerless, parents need to understand the dangers and then minimize their family’s exposures. We must, to the extent we can, take control over the environments in which our children live, learn and play and reduce or eliminate these threats whenever possible.

8 Ways to Reduce Your Child’s Exposure

  Campaign For Safe Cosmetics Teens generally use more personal care products than adults. Teens for Safe Cosmetics is a coalition of enthusiastic young women who are educating their peers and policymakers about the dangerous toxins found in most personal care products. They were a driving force in the passage of The California Safe Cosmetic Act and other legislation aimed at eliminating toxic chemicals in many consumer products.

  Clean Green Replace all of your toxic household cleaners with safe “green” non-toxic products. You essentially need five or six green cleaning products: all purpose, glass cleaner, laundry liquid, dish soap and cream cleanser for tub, tile and porcelain—check out our selection of Greening the Cleaning® products. Compliment these green products with ingredients already in the cupboard: white distilled vinegar (for laundry softener, cleaning floors to alternate with all purpose cleaner), baking soda and lemon juice (to clean grout and copper pots).

  Curb Computer Use Limit time on the computer, and place it in a ventilated area. Don’t allow computers in your child’s bedroom. Attach a radiation filter plate to your computer screen.

  Go Organic By eating more organic foods you will help prevent unnecessary and dangerous pesticide exposure. Organic products are rich in all of the vitamins, minerals, and micronutrients a teenager needs to feel good, look good and perform well. If you eat animal, dairy and cheese products, stick to organic to reduce your dioxin, hormone and pesticide exposure. Check labels and bypass foods that contain dyes and synthetic food additives—focus instead on whole, fresh foods (canned and ready-prepared microwaveable meals may contain BPA).

  Drink Pure Water Use a home water filtration system, and fill stainless steel or BPA-free bottles for when you’re on the go.

  Don’t Smoke There are over 7,000 chemicals in tobacco smoke, at least 250 of which are known to be harmful.

  Manage Pests Safely Many of the chemicals used by exterminators are known carcinogens, neurotoxicants and teratogens. Utilize a pest control or lawn service company that does not use dangerous pesticides.

  Improve The Air Installing an air filtration system will help improve your home’s indoor air quality.

Posted in Featured, Living with Autism, Newly Diagnosed | Leave a comment

The Folate Factor

Posted on January 21, 2020 by admin

A newly discovered disorder may play a role in autism…

Autism spectrum disorders (ASDs) - which include autistic disorder, Asperger’s Syndrome, and pervasive developmental disorder-not otherwise specified (PDD-NOS) - are defined by behavioral observations and characterized by impairments in communication and social interaction, along with restrictive and repetitive behaviors [1].

An estimated one out of 110 individuals in the U.S. is currently affected with an ASD [2], but the cause of ASD is not known at this time. Several genetic syndromes—such as Fragile X and Rett syndromes—have been associated with ASD, but scientific studies have found that genetic syndromes are only observed in a small percentage (6-15 percent) of children with ASD [3]. Therefore, the cause of ASD in most children with these disorders is not due to a simple abnormality of the DNA code, or a missing or extra piece of a chromosome.

The association of ASD with a number of physiological abnormalities, including immune dysfunction and inflammation, mitochondrial dysfunction, oxidative stress and environmental toxicant exposures, has gained increased attention in the last five years [4]. Findings from these areas of research suggest that there are many physiological abnormalities that could contribute to the development of ASD in some children.

An example of a physiological abnormality that might cause ASD is mitochondrial disease. Recently we reviewed the evidence for children with ASD having abnormal functioning of mitochondria [5]. The mitochondrion is an essential part of each cell, and is responsible for producing energy for the cellular metabolic processes. When this energy engine of the cell does not work correctly, many organs in the body—especially those that require a high amount of energy (like the brain, gastrointestinal tract, and immune system)—may not function correctly, resulting in symptoms seen in mitochondrial disorders. Recently we also pointed out that symptoms of mitochondrial disorders overlap the symptoms commonly seen in ASD [5, 6].

As we discover more about ASD and its underlying physiological abnormalities, we learn about new disorders that can also result in ASD.  In this article, we describe a newly discovered disorder called cerebral folate deficiency (CFD) that has recently been closely linked with the general population of children with ASD [7].

What is CFD?

CFD is characterized by below normal levels of the active metabolite of folate known as 5-methyltetrahydrofolate (5MTHF) in the central nervous system (CNS), despite normal levels of folate metabolites in the blood. 5MTHF is normally transported into the CNS through one of two pathways. The CNS folate receptor protein alpha (FRA) transports 5MTHF directly into the CNS in a process that is dependent on mitochondrial function (ATP production). 5MTHF is also transported into the CNS through the reduced folate carrier (RFC). Impaired transport of 5MTHF into the CNS can lead to reduced levels of 5MTHF in the brain and cause CFD.

Children with CFD can have severe symptoms such as difficulty walking, abnormal balance, speech problems and autistic symptoms [8]. Treatment of CFD with folinic acid (leucovorin calcium), which can enter the brain through the RFC, has been shown in some cases to dramatically improve motor skills, even in as little as one week, as well as improve speech impairments [9].

In 2005, an autoantibody was discovered which attaches to the FRA, making it dysfunctional [10]. Normally, 5MTHF binds to the FRA on the blood side of the brain and is then transported across in an ATP-dependent process. 5MTHF is normally concentrated two-fold higher in the CNS compared to the blood. The FRA has a high affinity for both folate (folic acid) and 5MTHF derivatives. The RFC has a lower affinity for folate metabolites, and it lies on both the blood and brain sides as well as in other locations including brain cells.

The RFC transports 5MTHF from the cerebrospinal fluid (CSF) into neurons. The FRA has a high affinity for the FRA autoantibodies, which block the transport of folate metabolites across this carrier on the blood side. These FRA autoantibodies have been described to be associated with neural tube defects, although this has not been found in every study [11]. One study reported a 12-fold increased risk of sub-fertility in women with the presence of these autoantibodies [12].

CFD and Dietary Factors

Cows’ milk contains soluble FRA antigen, which is 91 percent similar to the human FRA. Autoantibodies to the FRA cross-react with the soluble FRA antigen in cows’ milk, which causes an increase in the circulating serum FRA autoantibody concentration. Exposure to cows’ milk has been shown to increase the concentration of the FRA autoantibody and lead to worsening of CFD symptoms, while elimination of cows’ milk has been reported to lower the autoantibody concentration and improve CFD symptoms [13]. Moreover, re-exposure to cows’ milk after a period of being cows’ milk-free substantially worsens the condition and increases the autoantibody concentration [13]. These findings may help explain why some parents of children with ASD report improvements in their child on a cows’ milk-free diet [14].

Exposure to cows’ milk has also been associated with constipation and megarectum in some children with ASD [15] and a recent study of 199 children with ASD reported that 58 percent had lactase deficiency [16]. Recently, some parents have been using camels’ milk as a treatment in some children with ASD because camels’ milk appears to help food allergies in some individuals [17, 18]. However, the concentration of FRA antigen in camels’ milk is similar to that found in cows’ milk, and its immunoreactivity with FRA is also similar to the FRA antigen in cows’ milk and is two to three-fold higher than with human milk (Dr. Quadros, personal communication, 12/21/11).  Thus, the use of camels’ milk in children with FRA autoantibodies may be problematic.

CFD and Mitochondrial Disease

In 2006, CFD was linked to mitochondrial disease in a case report of a child with an incomplete form of Kearns-Sayre syndrome [19]. Further case reports and case series later expanded the association between CFD and mitochondrial disorders to include complex I deficiency [20], Alpers’ disease [21] and complex IV hyperfunctioning [22], as well as a wide variety of mitochondrial disorders in both children and adults [23]. One study reported a child with ASD who also had mitochondrial disease and CFD [24]. In most of these cases, autoantibodies to FRA were not found, suggesting that it was the lack of ATP availability secondary to mitochondrial dysfunction that resulted in the impaired transportation of 5-MTHF into the CNS.

CFD and ASD

To date, three studies have reported a connection between CFD and Rett syndrome [25-27] and seven studies have reported an association with ASD [10, 13, 24, 28-31]. CFD was first described in ASD in a study of 20 children with CFD, of whom seven (35 percent) met the criteria for autism on the Autism Diagnostic Observation Schedule (ADOS). In this study, 18 of the 20 (90 percent) children had normal development during the first four months of life, followed by a deceleration of head growth from four to six months of age, as well as sleep disturbances, marked unrest and irritability. Interestingly, nine of the 20 (45 percent) children had a reduced CSF 5-hydroxy-indolacetic acid (5-HIAA) level, which is a metabolite of serotonin. Seven of these nine (78 percent) children had 5-HIAA levels return to normal after folinic acid supplementation. Treatment with folinic acid also increased 5MTHF levels in the CSF in these children.

Another group of investigators described a six-year-old girl with CFD who met the criteria for autism as measured on the ADOS and the Autism Diagnostic Interview-Revised (ADI-R). Treatment of this child with folinic acid corrected the low 5-MTHF levels in the CSF and led to improved motor skills, as well as mild improvements in verbalizations and social interaction [31]. A larger study reported that out of 28 children with CFD, five met the criteria for autism on the ADOS. These children had “low functional” autism along with neurological deficits. One child “recovered completely” after taking 400 µg of folic acid daily and was reported to be attending regular school; this child did not produce autoantibodies to the FRA.

The other four children with autism had mental retardation as well as high concentrations of FRA autoantibodies (ranging from 0.65 to 1.27 pmol of FRA blocked per ml of serum), and treatment with oral folinic acid led to improved communication in the two youngest children (ages two and five years), while the older two children (ages five and 12 years) had minimal changes. Interestingly, in this study, four out of the five children with autism produced autoantibodies to the FRA that accounted for the CFD [10].

In another study of 25 children with regressive autism who were “low functioning” with or without neurological defects, 23 (92 percent) had low CSF 5MTHF levels consistent with CFD. Of these 23, 19 (83 percent) had measurable autoantibodies to the FRA which could account for the low CSF 5MTHF. In one of the children with CFD and autism, the FRA autoantibody concentration significantly correlated with aggressive behavior.  These children were treated with oral folinic acid, and two of the younger children (ages two and a half and three years) were “cured with full recovery from autism and neurological deficits.” Three older patients (ages four and a half, eight, and 11 years) had improvements in neurological deficits but not in autism symptoms. The remaining 13 children (age range three to seven years) had improvements in neurological deficits, and partial improvements in autistic symptoms, including social impairment (four children, 31 percent), communication impairments (nine children, 69 percent), and restricted interests (six children, 46 percent) [29].

In another study of seven children with CFD, five were examined for possible autism (two displayed symptoms too severe to be tested for autism) and all five met the criteria for autism based on the ADOS and ADI-R. Notably, none of the five had a history of deceleration of head growth, a common feature in CFD. Four of the seven (57 percent) demonstrated improvements in cognition, motor skills, social interaction, communication and a reduction in the frequency of seizures with folinic acid treatment [28].

Finally, in another study of 24 children with CFD, 10 met the criteria for autism and oral folinic acid was given to all 24, which led to improvements in irritability, insomnia, ataxia, seizure frequency and spasticity, as well as ceasing the deceleration in head growth. In the 10 children with autism, folinic acid led to marked improvement in two and partial improvement in four, in communication, attention and stereotypical behaviors. Elimination of cows’ milk also dramatically lowered the FRA autoantibody concentration [13]. From these studies of children with concomitant ASD and CFD, treatment with oral leucovorin (0.5 to 2 mg/kg/day) resulted in improvements ranging from partial improvements in communication, social interaction, attention and stereotypical behavior [10, 13, 28, 31] to complete recovery of both neurological and ASD symptoms [10, 29].

ASD, CFD and FRA Autoantibodies

In the aforementioned studies, most children with ASD who had CFD typically possessed FRA autoantibodies. However, in two of these studies, 17 percent [29] to 20 percent [10] of these children did not have autoantibodies, indicating another cause for CFD was present. Since the transport of 5MTHF into the CSF is ATP-dependent, one potential reason for this finding is mitochondrial dysfunction [23], which is a relatively common finding in ASD [5]. In one study, children with ASD who had a high FRA autoantibody concentration were very likely to have a below normal level of 5MTHF in the CSF [13]. However, some children had low levels of CSF 5MTHF, even when the FRA autoantibody concentration was very low. Therefore, it is apparent that some children with ASD who have either a very low concentration of FRA autoantibodies or no autoantibodies may still have CFD or below normal levels of 5MTHF in the CSF. Treatment of these children with oral folinic acid may lead to beneficial effects.

Recently, we reported a study that measured serum FRA autoantibody concentrations in 93 children with ASD [7]. A high prevalence (75.3 percent) of FRA autoantibodies was found.  Unlike previous studies of FRA autoantibodies in children with ASD, none of these children had CFD or significant neurological deficits. In 16 children, the concentration of blocking FRA autoantibody significantly correlated with the CSF 5MTHF concentration, which, in each case, was below the mean level found in typically developing children. Children who possessed FRA autoantibodies were treated with oral leucovorin calcium (2 mg/kg/day; maximum 50 mg/day).  Treatment response was measured and compared to a wait-list control group who also possessed FRA autoantibodies but was not being treated with folinic acid.

Compared to controls, significantly higher improvement ratings were observed in treated children over a mean period of four months in verbal communication, receptive and expressive language, attention and stereotypical behavior. Approximately one-third of treated children demonstrated moderate to much improvement, and the incidence of adverse effects was low. Given the results of that study, empirical treatment with leucovorin calcium without performing a lumbar puncture appears to be a reasonable and non-invasive approach in FRA autoantibody positive children with ASD.

FRA Autoantibody Testing Advisable?

Because FRA autoantibodies appear to be highly prevalent in children with ASD, we recommend that FRA autoantibody testing should be considered in all patients with ASD. Early identification and treatment is paramount, as younger children generally respond more robustly than older children, with “cure” reported in some children.  An overlap between ASD, mitochondrial disease and CFD is found in some children with ASD, and therefore we also recommend testing for mitochondrial disease. In children with ASD who have FRA autoantibodies or who have CFD, treatment with oral folinic acid can lead to improvements in receptive and expressive language, attention, stereotypical behavior and social interaction [7, 29]. Interestingly, one study reported an improvement in seizure activity with folinic acid treatment [28]. Elimination of cows’ milk is also essential [13]. Further studies examining FRA autoantibodies and CFD in children with ASD are warranted.

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The Transition to Adulthood: Planning Ahead

Posted on January 15, 2020 by admin

When my son Jeremy reached 22, he left the auspices of the school district. Like many on the spectrum, his interests and needs were varied and he didn’t fit into any of the adult programs that existed in our area at the time. Jeremy wanted to continue to learn at our local community college, improve on his writing skills, and start earning some money.

Some of his goals in both his Individualized Education Program (IEP) and Individualized Transition Program (ITP) in his last few years of high school addressed areas such as planning and self-advocacy, so that he would be prepared for the different rights and responsibilities that exist for college students. But he also learned work skills by writing for the high school newspaper, and learned about marketing in order to get freelance work. He took his first class at community college while still in high school and this was extremely helpful. Other aspects of the transition to adult life did not go quite as smoothly, but luckily we had some contingency plans to fall back on. His progress (and pitfalls) demonstrated so clearly that creating an adult life is an ongoing process.

The transition to adulthood can be quite a shock for both the adult child with autism and his or her parents, no matter how well you prepare. In our book, A Full Life with Autism; From Learning to Forming Relationships to Achieving Independence, Jeremy and I offer practical advice from our experience as well as information obtained from research and other parents, professionals and adults on the spectrum. Here are some tips for parents to consider…

Start Early To Prepare Your Teen On The Spectrum

The reality is that your teen may qualify for services when he is an adult, but there are not enough spots or options available for our loved ones on the spectrum. Make sure to get your child on lists for services you feel may be a good match as early as possible. As well, make sure to include on your child’s IEP and ITP goals for life skills that they will need as an adult in the community such as self-advocacy, self-regulation, and task completion (includes planning and organizing). These can be taught at different ability levels, and are necessary for all to learn.

Transitioning Young Adults; Transitioning Ourselves

Parents often discuss how challenging transitions are for our children on the spectrum, but they also are difficult for parents. While our teens are in school they have a schedule and access to educators and professionals they have known for years—and so do we as the parents. That support ends when our young adult leaves the school district.

Many parents will also be juggling trying to help elderly parents and perhaps keeping their jobs in this new economy. There is a risk of burnout and parents need to be creating connections and supports that will be there for us when our students leave the school district. Carving out a bit of time for what we want to do for ourselves that reduces stress and provides pleasure to our lives is important.

Plan The Future Based On Your Child’s Interests

It’s important that whatever plans are being made are based on the teen’s interests and desires. This is a good way to create connections and ensure more enjoyment out of life. A great planning tool you might want to consider using to help your teen is person centered planning, which is a problem-solving process that helps a person with a developmental disability plan the life he or she wants. A group of people who care about the person get together and figure out how to support the person in planning his or her life, depending on their goals and needs.

For those who are unable to communicate effectively, it is even more important to have people involved who know the person well enough in different areas of the person’s life to help give input about what appears to be important to that person. Using PATH, a creative process that works backward, starting with the person’s hopes for the future and moving toward what first steps can be taken now to go in that direction is a good idea. A PATH identifies goals, and who can help the person reach his goals.

Create Circles Of Support

Creating different circles of supports is what most of us have been doing since birth. We’ve been creating networks of people who connect with us on different levels. Most neurotypical individuals have people in four types of circles of supports.

Those with disabilities—including autism—have practically all the people they know clustered into the Circle of Intimacy, and the Circle of Exchange (paid service providers). Having connections only on these two levels helps create the emotional and financial strain on the family that most of us parents of loved ones on the spectrum feel. What is needed is more connections to organizations and areas of interest (Circle of Participation) where there is the possibility of meeting people who eventually become friends (Circle of Friendship). This will not only provide more quality of life for your adult child, but will ease the strain on the family.

The young adult and his parents need to create a circle of support of people who care about the adult child but who are not related to him, and who are not currently paid to care for him. These may be former tutors, therapists, or teachers, people from church or school with whom the adult child has developed relationships.

Creating the Circle of Participation and the Circle of Friendship for someone like Jeremy, who needs a support person and uses assistive technology to communicate but does not easily initiate communication, is not easy. However, by focusing on his interests—writing, autism, and advocacy—we are making connections with other people and organizations. Creating a meaningful life does not happen overnight; it’s an ongoing process and can be rewarding for all involved.

Posted in Education, Featured, Living with Autism | Leave a comment

Success on the slopes

Posted on January 14, 2020 by admin

Passing the skiing tradition along to the next generation has multiple benefits—especially when autism is a factor…

I went on my first ski trip during my freshman year of college. Even the nasty crash I had didn’t matter: I was hooked. From that winter on, all of my disposable income went towards ski trips.

When my husband Jack was newly transplanted to the west coast, I had the pleasure of teaching him to ski, and after we were married, I dreamed about the children we would have and the incredible ski trips we’d take as a family.

Delayed dreams

I spent Thanksgiving of 1996 skiing with my extended family. As I skied down my favorite run, I stopped to soak in the beauty of the Eastern Sierra—and had an inexplicable but overwhelming feeling that this ski trip would be my last for a while.

It turned out I was right. I was pregnant with my first son, Eric, the following winter, and again the next season with my second son, JP. Eric would be diagnosed with autism at the beginning of the ski season in 2000. It looked like our skiing days were over. Years passed quickly after Eric’s diagnosis. Early on, there was a frantic pace of transporting him to different schools, therapies, social programs and doctor’s appointments.

At age eight, Eric played on a baseball team for children with special needs. During the first game, it warmed my heart to see volunteers working so hard to give these kids an introduction into America’s favorite pastime. As I looked out on the baseball diamond, however, it struck me: baseball is slow paced—tough for kids with attention deficits— and good hand-eye coordination is needed to throw and catch the ball. Watching the kids swinging that big bat and trying to pass the midline was just painful. Most of them, including my son, were not having fun; I had to find something different for Eric.

Re-Thinking The Options

I can’t remember how I heard of Disabled Sports Eastern Sierra, but after I spoke to the program director, I knew I’d found Eric’s new sport. I planned a trip for us later that winter. Before we left San Diego for our ski weekend, we desensitized Eric to wearing ski clothing and a helmet. He showed up at the mountain that morning wearing more clothes than he’d ever worn. He met his ski instructor and went off to learn the basics.

Jack and I dropped off JP at ski school. It was thrilling to watch both of our boys learning to participate in the sport we both love so much. By the end of the morning, both Eric and JP could ski.

A Boost of Confidence

For the past five winters, we’ve taken Eric to Disabled Sports Eastern Sierra. He improves each year. In fact, he often skis faster than me. I take pleasure in knowing that my son has pushed me to the next level of skiing so I can keep up with him. It took eleven years for Jack and I to get back to skiing. It was worth the wait.

When I think of Disabled Sports Eastern Sierra, I get emotional. You see, they didn’t just teach Eric to ski. They taught him that he could participate in sports. They gave him confidence that he didn’t have before. But beyond that, these wonderful people gave me the skiing family I dreamt of all those years before. There aren’t enough “thank you’s” in the world to express my appreciation to these individuals.

 

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Autism Skis at Extreme Sports Camp

Posted on January 14, 2020 by admin

Got Autism? Get Moving!

Imagine a ski vacation where everyone in the family is having fun and learning to ski—including your child with autism. Through its Autism Skis program, Extreme Sports Camp of Aspen, Colorado teaches children and adults all across the autism spectrum how to ski or snowboard. From novice to advanced, it caters to any athletic ability—even couch potatoes and video game junkies find themselves having an exhilarating time.

Extreme Sports Camp trains its professional ski instructors in autism-friendly teaching approaches. The instructors are supported by ski buddies who are autism specialists, there to nurture social and emotional competence and enable more complex motor movements. An extensive intake process with the family allows staff to understand the optimal behavior, communications and sensory strategies of each camper. After an initial assessment, an individualized, goal-directed ski curriculum including longitudinal, itemized data collection of progress is implemented. Participants are challenged yet savor success, leading to increased self-esteem and appreciation of the outdoors and an active lifestyle.

“Our son has benefited enormously from participating in Extreme Sports Camp for the past two years. His confidence and sense of independence has risen significantly,” says one parent testimonial. “At ESC he felt really welcome, included, and part of a family.”

The Autism Skis natural classroom is in the world-class, family-friendly ski resort of Snowmass, Colorado. Its many ski runs, lifts and gondolas, wooded trails, restaurants, and relaxing after-ski entertainment provide endless opportunities for social engagement and peer interaction, as well as for quiet and solitude.

“We’re especially excited about our newest peer mentorship programs,” says executive director Deb Sullivan Gravelle. “Working in conjunction with our sports instruction program, local students participate in our après-ski activities with campers in a similar age bracket. Some of our campers participate in mainstream ski lessons with the aid of a 1:1 ski buddy. These programs build our campers’ social skills and expand understanding and acceptance of autism.”

Ski programs run from when the lifts open at Thanksgiving until mid-April. Scholarships and family stay options are available. For more information or to register, visit extremesportscamp.org/winter-programs.

 

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Autism Hits The Slopes

Posted on January 14, 2020 by admin

Adaptive skiing programs provide ASD kids and families with invaluable health benefits and lifelong memories…

I love to ski. I love mountains and I love snow. Skiing gives me a sense of freedom that is unmatched in any other activity I do. It calms and exhilarates me at the same time and I would truly rather be skiing than doing anything else.

I caught the “ski bug” when I was 16 and cemented it during my first holiday to Austria. When I was offered a job after grad school in Las Vegas, within sniffing distance of Utah, I jumped at the chance. It was there that I met my husband.

Mountain memories

A few years later we moved—an occupational hazard of marrying into the military. Our time living away from mountains was even a factor in the timing of us starting our family. Since there isn’t any skiing in Texas, it didn’t matter if I was pregnant there and we would use our time to care for our baby boy, Tom. When Tom was two, he was diagnosed with autism. We left Texas a month later for 11 months in Alabama, another non-skiing location, so we threw ourselves into Tom’s therapeutic and biomedical interventions. He thrived. His bowel problems subsided and his speech started developing.

In early 2010 we discovered our next duty location—Colorado Springs, CO. I have to admit, my heart jumped. I was so excited at the prospect of moving where we would once again be able to drive to the mountains to ski. The several months of waiting to relocate were torture. When we moved, our son was three; surely that wasn’t too early to put him on skis?

For a child with autism, would skiing be an option at all? Were we going to Colorado just to be frustrated that our son couldn’t join in an activity that we loved so much and desperately wanted to enjoy as a family? Some people visualize playing baseball or soccer with their child, or watching them at dance recitals. For me, it was the image of my little guy bombing down a black run next to me, with the exhilarated look on his face that I understood so well.

Gearing up

In preparation for ski season, we bought Tom a jacket, ski pants and a helmet, all on clearance, and rented him some skis for the season. We were afraid to invest either too much aspiration or money, just in case things didn’t go as we hoped. He tried everything on, then walked around the house in his boots and skis to get used to the feel of the gear and clothing.

We did our research on ski school programs and were thrilled to discover that our closest ski resort, Breckenridge, also had an adaptive program. When most people think of adaptive programs, they think about physical disabilities, rather than developmental ones. Like several programs nationwide (see sidebar), the Breckenridge Outdoor Education Center (BOEC) is able to accommodate children and adults with autism spectrum disorders and other developmental disabilities too.

Meeting the challenge

We headed to our son’s first ski lesson with trepidation— what if he didn’t like it or became so frustrated with any problems that he had a meltdown? What if a bad experience put him off forever?

We needn’t have worried: he loved it. BOEC sends out an instructor and a volunteer helper for each child; the staff works hard to make things fun for their students. They played in the snow and rode the “magic carpet” to get to the top of the gentle, roped-off beginner area. We were so proud when we saw him come down that slope the first time. We discovered our son actually has good balance, which was a huge surprise. We’d spent the previous 18 months so focused on his deficits—what he couldn’t do and where he was delayed—that we’d forgotten to look at what he could do.

The first ski season we just concentrated on him having fun on the hill. He quickly got bored with the little hill and we were shocked one day to see him racing down the main hill between his two instructors holding onto a pole. The chairlift had become a big motivator for him—he just loved to ride on it—and on the way down, his instructors worked on him skiing using muscle memory. Even with typical children, the ability to snow plough isn’t there until around the age of four or so.

Upping the ante

After our successful first ski season, we took the plunge and picked up some used skis for him, since it cost around the same as renting. We are lucky that a store in our city has a “trade-in” program, so once Tom is finished with these skis, he can trade them in for a longer set with only a minimal cost outlay.

Our second season brought new resorts into the mix. One benefit of being a military family stationed in Colorado is that we have access to a discounted lift pass for some resorts, one of which is Keystone. Luckily, BOEC also has an operation at Keystone, so we decided to give them a try as well. We couldn’t believe that after our first day there, Tom had learned to stop while skiing downhill—a major accomplishment for any novice skier.

The volunteer with him that day was an Applied Behavioral Analysis (ABA) tutor that used to work at Tom’s old therapy office, as well as being an adaptive soccer coach, so her knowledge of behavior and motivation worked really well. His instructor was also wonderful and really understood some of the fine motor problems that could affect skiing.

Reaping the rewards

Not only does skiing offer families the chance to experience unparalleled fun, it has therapeutic benefits to individuals with autism. “Skiing is a very organizing, challenging, and fun activity that gives terrific multisensory input coupled with aerobic exercise,” according to author, Autism File “Sensory Smarts” contributor, and occupational therapist Lindsey Biel. “Kids get great vestibular, proprioceptive, and tactile feedback from navigating through snow that builds balance, motor sequencing skills, muscle power and body awareness. It’s one of the most motivating activities out there.”

One of the many rewards to our family became evident at Keystone on our last day of the season: Tom could now turn and stop independently! I got to ski with my little boy that sunny day and it was nothing short of incredible. We view our son skiing with us as a victory because autism sometimes prevents families from spending time together in fun activities. We’re looking forward to next season with the hope that Tom will continue to build on his skills and confidence amongst the beauty of the Colorado mountains. The dream of my little guy and I racing down a black slope together is still alive in my head—and to me that’s priceless.

Tips for a Successful ASD Skiing Experience

  • Communicate with ski staff. Keep in mind that not all adaptive programs are autism-specific, but even those that aren’t may still be viable options. Tell your ski program’s staff about your child and give them ideas on how to best work with him. Let them know his challenges, strengths, and what motivates him.
  • Relax. The aim of the first lesson or ski experience is for the child to have FUN and enjoy their time in the snow. Don’t pressure them.
  • Explore the options. Many programs offer both skiing and snowboarding options. Since we are a skiing family, that’s the route we chose, but if your child would prefer to snowboard, give that a try too!
  • Bargain shop. Borrow ski clothing rather than buy it if you don’t live in a climate where you would need snow gear. Wait to buy until you know your child enjoys snow sports. There are a ton of options for buying used cold weather gear too, which tend to be grown out of before showing wear.
  • Get package deals. Most ski programs include rental equipment in the lesson price. Check with them before renting gear.
  • Use stickers. For every day of skiing, we had our son put a new sticker on his helmet. He thought this was really cool and tied in well with the token economy concepts he had already mastered through ABA and preschool. It added to his sense of accomplishment.
  • Test the ski wear in advance. For children with sensory difficulties, have them practice wearing their snow clothes before the lesson. Have them get used to wearing extra layers.
  • Use a helmet. Most programs won’t allow children to ski without one. Always use a proper snow sports helmet rather than a cycling or skating one.
  • Dress in layers. It’s easy to go from being cold to sweltering when skiing. Have layers kids can remove if they get too warm.
  • Don’t forget sunscreen. The snow reflects the sun which can accelerate sunburn.
  • Explain the process. Clearly explain to a child what they will be doing. Use pictures and internet videos to help them visualize.
  • Plan for meals. If your child is on a special diet, remember that ski resorts seldom have allergy-friendly food options. Pack a lunch to include some of your child’s favorite foods to add to the positive experience. Also pack snacks and plenty of fluids—skiing is hard work!
  • Ask about scholarships. Since most adaptive ski programs are non-profit, they often have scholarships available so that cost is not a barrier to participation.

 

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Your Child’s First and Best Advocate: You

Posted on January 9, 2020 by admin

Whether it’s one voice helping one child, or many people joining together to effect change, advocacy can make a world of difference…

Twenty years ago, I was just about to graduate college with a communications degree. I was looking forward to a career in media. If anyone had told me at the time that most of my professional career would be spent advocating for kids with special needs, and even more specifically that I’d be speaking out against an overly aggressive and possibly unsafe vaccine schedule, I would have told them that they were nuts. After all, four years earlier I was the President of the Young Republican Club in high school. My father had just retired from the Navy, after twenty-five years. I was a Sunday school teacher. The idea that I would thumb my nose at the federal government as well as local school districts for most of my adult life would have been too hard for me to believe.

But as John Lennon wrote, “Life is what happens to you while you’re busy making other plans.” I met my husband, Jack, a week after college graduation in Pensacola, Florida, where he was going through flight school. In a few short years, we would be married. A couple of years later, our son Eric would be born—and that would change everything.

Bolt From The Blue

Like so many children on the autism spectrum, Eric developed typically for a period of time and then regressed. My extremely new “mommy sense” told me that his regression just wasn’t normal, and that it certainly wasn’t supposed to have happened. That sense of unease lit a fire deep inside of me.

When Eric received a diagnosis, I hit the ground running. I had to make things better for him and I had to make life better for our whole family, which by then included a newborn. Even though the year 2000 was just the beginning of the autism epidemic, I had the benefit of living in San Diego. San Diego was home to the Autism Research Institute (ARI), where Dr. Bernard Rimland had for decades carried out ground-breaking biomedical research. He had also done a tremendous amount of advocacy work for individuals on the spectrum. I had access to theories on treatments and therapies that most of the country would only know about later, and I believe the high level of functioning that Eric has attained today has much to do with the hard work of Dr. Rimland and ARI. I will forever be grateful to them.

However, this did not mean that the treatments I had learned about just landed in my lap or that the school district gave Eric the special programs and assistance he needed at our first IEP meeting. No, it took a lot of time researching on the computer to identify these things. Then in order to obtain these treatments and programs, it took a lot of advocacy.

From Little Acorns…

Advocacy typically involves many different activities, but it isn’t always linear or straightforward, and sometimes it isn’t even your child who benefits from your efforts. I learned this first-hand very early, when Eric’s IEP team decided that mainstreaming at our neighborhood school would be the best plan for his first year of grade school. My husband and I were elated with the notion that Eric was doing well enough to be mainstreamed—little did I know that this would be the beginning of “the year of agony,” as I refer to it.

The school ended up not supporting Eric properly for most of the year, and by the time spring rolled around that year, they wanted Eric out. I dug in and said that I would not let Eric be tossed from school to school with only weeks left in the school year. I needed the school to realize that many of his problems had occurred due to their inability to support him. I hired a professional advocate to help me, but although Eric finished out his year at our neighborhood school he was placed in a special day class the following year. I felt defeated in my advocacy. I wasn’t able to keep my son in a mainstream placement. Even with the help of a professional advocate, I wasn’t able to do it, and it was depressing.

However, something else happened. My advocate and I planted a seed at that school. Many of the teachers, aides, and administrators became aware of proper techniques for mainstreaming children on the spectrum because of Eric’s failed year. Nine years later, I often hear from families in my neighborhood who are happy with their mainstream placement for their ASD child at Eric’s old school. I feel confident that I had something to do with the change that occurred. It gives me great satisfaction to know that the advocacy I did for Eric—while unsuccessful for him—ended up helping a new generation of kids on the spectrum. And that is pretty amazing.

Advocating As An Individual

Advocacy by fire is how most parents gain experience helping their children—if you’ve ever lobbied for a certain treatment, therapy, program, or an accommodation for your child, you’re already an advocate. Whether it was making sure that your school district followed Free Appropriate Public Education (FAPE) laws, or obtaining more speech and OT through your health insurance, that was an act of advocacy.  Now is the time to do more!

Knowledge is key in advocating: that’s why it involves attending meetings and doing research. When asking for a new therapy or school program, it’s essential that you have a deep level of understanding about it. Once you have that knowledge, you can formulate the reasons explaining why it’s a necessity for your child. Anticipate the objections from the school, state or insurance company to funding the therapy or program. Then put together a defense to counter their arguments. Preparation is vital when advocating for your child.

Advocating Together

This is where I’d like to see more parents put their efforts. One voice helping one child works in the individual advocacy world. It can make a world of difference for one child or even one school, but it certainly doesn’t set the stage for the large transformation that is required to collectively help this new generation of individuals with autism. Many people coming together is necessary to achieve this goal.

As you can see from the sidebar (right), some advocacy work requires a village. If you have a talent for any of the tasks listed, get involved with our fantastic non-profits, many of which don’t have the resources to pay professionals to do the work that is needed for our kids. Think about which autism organization(s) you admire—almost all do advocacy on some level, so volunteer for one of these organizations. Think about where your talents lie, and volunteer that talent. If you’re a professional, use your vocational experience to help an autism organization. Having parents do what they do best for autism organizations is a magnificent scenario.

Lessons Learned From 10 Years of Advocacy

State government, federal government, school districts, and insurance companies are not going to help our children until they have to help. It seems counter intuitive, but these agencies aren’t really made up of leaders—instead they’re made up of followers. It’s up to us as advocates to change our communities and to change the court of public opinion so that these bureaucrats must start following us.

I hope this article has inspired many of you to advocate more for your child, and to also assist autism groups in their advocacy. There are days that I feel my work in advocacy is like riding a rollercoaster, due to the ups and downs I encounter.  There are days where I don’t want to get into the rollercoaster car, but then I think of my sweet boy and all the others like him, and I decide that I’m not giving up on these individuals. Never. I think there are a lot of parents out there who feel the same. So let’s start changing things for them. As Margaret Mead so wisely said, “Never doubt the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”

I have one last suggestion on advocacy. Even if you don’t think you have time to help, there is something each of us can do. I want you to tell your story of dealing with autism to others. I know that sounds simple, but it can have a large impact. Genuine, heartfelt stories about dealing with autism are very powerful. Sharing the story of your child’s development, struggles, and accomplishments will bring about greater understanding and compassion for those on the spectrum from others in your community. Your story lends a face to autism.

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Make Your Move

Posted on January 3, 2020 by admin

Turning interest into activity can boost your spirit - and your health…

If you read the average women’s magazine (which I hope is far down your reading list after you’ve read Autism File), you see story after story on how to get and stay healthy.  Why, you can hardly read the pharmaceutical ads without being interrupted by articles telling you how to lose weight, look younger, eat better, cook healthier, exercise more, work your abs while you sleep—it never ends.

I think it’s all a bunch of crapola.

A healthy lifestyle isn’t about being scolded into changing habits.  It’s not about reevaluating your love of Keebler Fudge Sticks (guilty) and striving to love carrot sticks. It’s not about breaking up with Ben—or Jerry. It sure as heck isn’t a comparative project, as you look at today’s “real” housewife who had a baby six hours ago and is now running the Atlanta Marathon with Baby Sigfried on her back smiling from the cover a magazine.  She, like every other woman in the magazine, has been (photo)shopped more than Macy’s the day after the Thanksgiving Parade.

Home invasion

I have three kids with autism, 18, 16 and 12. I’ve been married for 21 years. I work umpteen jobs. I keep a house.  I cook from scratch.  And I’m so tired I could scream. But—my lifestyle has never been healthier. Why? Because I found something I truly love that motivates me physically, emotionally and even spiritually in some strange way. What is it?

Call me Karate Kim.  I’m training to earn a black belt in traditional Shito-Ryu karate along with my AARP card by 55.

I know! It’s ridiculous to imagine me—a Mom—in a white gi kicking and punching and sweating and—hey wait, it sounds pretty good, doesn’t it?   Here’s how I started.

In the spring of 2010, I was sitting at my desk working when I heard the sound of breaking glass. I stood and looked out my kitchen window to see a strange car backed up to my garage door. And then I heard the garage door open. I was about to have my home invaded.

Long story short:  I grabbed the phone and tip-toed out my front door as robbers were breaking in my back door. In what could have been an episode of I Love Lucy meets Baretta, the police showed up, the bad guys leapt out of my front door and fled across the street into the river that runs through my neighborhood.  One was caught, arrested and convicted, and the other escaped. I guess there is honor among thieves because the police never learned the identity of the second robber.

By the time the dust had settled and the police reports were complete, I had a chance to reflect on what had happened.  And it scared me to death. If my kids had been home, I would never have been able to get them out of the house quickly or quietly.  Come on, we’re talking autism:  Mia would have had to grab four books, three DVDs, a small blow- up Bozo the clown and some red carnival stuffed super hero who looks like a reject from the casting of The Justice League.  Gianna would have searched for two ratty photos of Taylor Lautner and a rubber duck. And Bella would have gone bonkers without three sets of Mardi Gras beads (colors subject to change) and her “Go Talk”.  In short, we’d have been caught by and at the mercy of robbers in ski masks.

Those of you who know me know I have a sharp tongue.  I can write a pointed retort as easily as I can type “A,B,C”—but actual defensive skills? I had none.

Kicking back

Shortly thereafter, I discovered a dojo a minute from my house—and I started training in kickboxing. I was afraid to try karate. It seemed so “unMomlike.”   One day the very wise dojo owner put a uniform in my hand and said, “You start tomorrow.  Be here.” It was exactly the push I needed.

I now train for two hours, four to six days a week, and have added Okinawan weapons training to my classes.  Am I nuts? A little. But the difference in my attitude, fitness, strength and confidence is worth the work.  Think about it:  what’s the one thing so many of us fear? Getting older. Not because of the vain reasons most magazines use to try to scare us into buying face cream or Botox injections, but because we know our kids are going to need us long after most kids have left the nest and launched their own lives.

Whether our kids are severely affected by autism or differently affected by Asperger’s, they will need us longer than most children need their parents. And we have to be prepared mentally and physically.  I might be helping Bella put on her pants at 25. I need to be able to bend over and get back up. I need muscle and sinew and endurance. Not to enter the Mrs. Connecticut pageant, but to provide the care my kids will need—into adulthood.

Calming the storm

My healthy lifestyle is about taking care of my girls.  I eat better because I’m as hungry as a horse and crave good food. Karate has a strong spiritual and zen-like component and that has helped me control my temper (No Mother Teresa, remember?) by learning to “be the calm not the storm.”  I’m still very stormy but working on it.

My trainer, Kyoshi Torri, has a saying to encourage us: “Little by little.”  He never rushes us. He is patient but firm.  My girls are now training in the dojo too. Gianna is learning to block, kick, and punch. She will need to be able to defend herself throughout her life.  Mia and Bella are stretching, exercising, and learning to follow commands.

A sense of accomplishment

I’m not suggesting that you, dear reader, join a dojo tomorrow. But I want you to do what autism requires us all to do every day:  think outside the box. Outside the diet. Outside the gym. What motivates you? What will bring you a sense of accomplishment and pride and offer the benefit of better health?

We all know what we need to do for our kids’ health. We live it every day. But what do we do for ourselves? I know we’ll all put the drop down oxygen mask on our kids FIRST, despite the flight attendant instructing us otherwise.  We’re autism Moms and Dads—our kids come first. But we have to remember to take care of ourselves.

A healthy lifestyle will look different for each of us. It doesn’t have to mean running a marathon or having a fridge full of fermented organic yak milk (is that casein free?).

For me, it’s karate.  For you it might be a quilting circle where you sit quietly with others and create your happiness with a needle and thread.  It might mean taking Zumba classes with wild abandon (I took one class and after watching myself in the mirror asked the instructor for a Xanax.)  Whatever you choose—as long as it feeds your mind, body and spirit in some way—let’s kick it!

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Taxing Matters…

Posted on January 2, 2020 by admin

A little diligence can make a big difference at tax time.

As the parent of a child with autism, I know all too well the high cost of treatments, therapies and co-pays not covered by insurance. My son, Dean, will be turning 16 this year. He was diagnosed at the age of three, so we’ve been at this for quite a while. When I became a tax preparer, I began to better understand tax rules and laws concerning medical expenses. I discovered that many autism-related costs are deductible as medical expenses on a personal income tax return, but are overlooked by many parents.

I’ve spent a lot of time researching common (and not so common) expenses, and feel it’s important to make sure that parents within the autism community are taking full advantage of all the deductions that are available. Every penny counts—especially when you have a special-needs child.

Deductive Reasoning

Most of the available deductions are taken as medical expenses on a schedule A, which is then carried to your Form 1040. Medical expenses are limited by 7.5 percent of Adjusted Gross Income, but some of the following out-of-pocket costs may cause you to exceed that limitation.

Medical expenses are defined as “the costs of diagnosis, cure, mitigation, treatment, or prevention of disease, and the costs for treatments affecting any part or function of the body.” This includes a multitude of categories, such as equipment, supplies, diagnostic devices, doctor visits, prescriptions, etc. Some of the most common and well-known deductions are prescription co-pays, mileage, insurance premiums (as long as they are not taken from your paycheck as a pre-tax deduction) and over-the-counter expenses (such as saline, bandages and antiseptic for wound care, saline solution, etc.)

Speaking in Specifics

Aside from some of those basic medical expenses, there are many others that are more relevant to families with special needs children, specifically autism. Now, listen up—and take notes!—because this is where it gets interesting for my fellow autism parents.

Any fees you pay (on a doctor’s recommendation) for your child to be tutored by a teacher who has been specially trained to work with children with learning disabilities are deductible. If you’ve made the choice to send your child to a school that specializes in his disability, then you can include the tuition, meals, and lodging expenses as a deduction, as long as the school was recommended by a doctor.

Parents who believe that various toxins may have played a role in their child’s autism often start looking for any environmental problems that may exist in their home, such as mold and mildew, or in older homes, lead from lead paint. There are swabs you can buy at the paint store to test paint simply by swabbing it and seeing if it turns colors. We all want our kids to be in the safest environment possible (see our feature on p35), so if lead paint is detected in your home, keep in mind that all the costs involved for removing it from your home would be deductible expenses.

Have you ever wanted to attend an autism conference but found the cost to be prohibitive? (I recommend the NAA conference personally, because it is so relaxing for moms and an amazing informational conference.) Go! Enjoy! Learn all you can! Because you can deduct the amount paid for admission and transportation to and from the conference (the cost of your meals and lodging aren’t deductible, however). Keep in mind that the IRS has strict rules regarding travel. There can’t be any “significant element of personal pleasure,” so whatever you do, do not have fun (okay, you can have a little fun… just don’t overdo it!). The majority of your time spent at the conference must be spent attending sessions… but that isn’t to say you can’t partake of a glass of wine in the evening while catching up with all your fellow online autism moms and dads.

Supplement Savvy

Supplements are also an important consideration. Many of you are probably like me, in that you have your very own nutritional lab in your kitchen pantry.

Most people see that nutritional supplements are listed under the “not deductible” section, or only read the first part and don’t finish the rule. It states that the cost of nutritional supplements, vitamins, herbal supplements, natural medicines, etc, cannot be included in medical expenses unless (key word here) “they are recommended by a medical practitioner as treatment for specific medical condition diagnosed by a physician.” Voila: they’re deductible.

Paper Trail

Organized and efficient record keeping is vital for any tax matters, so keep all of your receipts. If you use the same doctor, pharmacy, dentist, etc., you can usually get an end of the year printout from them for the out-of-pocket totals. I recommend this, as it’s usually the easiest way to access the total amounts spent, and takes up a lot less space.

This would also enable you to have a record of each of the dates you went to appointments, so that you can figure your mileage. I’ve found it useful to use MapQuest or Google maps: their online directions tools include mileage totals. I print these out and put them with my tax records to prove the distances traveled.

Another important end-of- year item to have is from your child’s doctor. Get him or her to write (or you write it and have them sign it) a statement with all the supplements your child has taken through the year, what the diagnosed conditions are, and whether they are on a special diet or need/have a therapy dog. Make sure it’s signed, and then tuck that away with your tax records. If I were ever to get audited, (gasp!) I have all my receipts, mileage statements, and letters from my son’s doctor all in one spot, so that it would be easy and impressive to produce whatever the auditor might want to see.

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Kim Stagliano on Media Portrayal of Autism

Posted on December 19, 2020 by admin

In the wake of the tragic shootings last week at the Sandy Hook Elementary School in Newtown, CT, parents everywhere are left struggling to make sense of the senseless violence that claimed 27 lives including 20 children.  Many media accounts have reported that the gunman had an Asperger’s diagnosis, although this has yet to be officially confirmed.  Parents of children with autism are expressing concerns over news accounts repeatedly linking autism with mass murder as autism is not associated with violence of this scope and magnitude.  With a largely uneducated public when it comes to the various manifestations of autism, the fear is that ASD children will be even further isolated from society than they already are.

Autism File columnist and Age of Autism managing editor Kim Stagliano sat down with CBS radio in New York on Monday to discuss the impact upon autism families from mischaracterizations of the diagnosis being sent out time and time again to an unwitting public.  If you’re concerned about questions you may receive from others about violent tendencies on the part of your child, listen in as Kim explains what autism is, what it isn’t, and the potential repercussions of sending out the wrong message about the diagnosis:

newyork.cbslocal.com/2020/12/17/expert-aspergers-syndrome-unfairly-scapegoated-for-newtown-school-massacre/

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