Dr. Doreen Granpeesheh of the Center for Autism and Related Disorders (CARD) shares her thoughts on the new autism diagnosis guidelines scheduled for publication in the DSM-5 (May 2013). Instead of having three separate autism diagnoses, there will now be an overarching autism spectrum diagnosis with levels of severity.

This controversial change may leave some more mildly-affected individuals without an official diagnosis will providing access to services for others that were limited by a PDD-NOS or Asperger’s Syndrome diagnosis.

Learn more about the history of autism diagnostic criteria: History of Autism in the DSM: DSM-I to DSM-IV.

A new study reveals that younger siblings of children with autism have a 20% greater risk of autism than their peers. The risk is even greater among younger brothers than sisters, which is not surprising considering autism spectrum conditions are more prevalent among males. I’m not a scientist but this study leads me to believe that genetics may play a prominent role in autism spectrum conditions.

Here is an excerpt from a story on USA Today about the study:

Autism was even more common in the younger brothers of autistic children, the study says. In general, about 80% of autistic kids are boys.

In this study, risk of autism in younger brothers was nearly three times greater than in younger sisters: 26% of brothers of autistic kids also had the disorder, vs. 9% of sisters. Scientists don’t know why autism is more common in boys, but they’re investigating, says Alycia Halladay, director of environmental research at Autism Speaks.

Given their higher risk, younger siblings of autistic kids should get careful screening, Halladay says. Studies show intensive behavioral therapy is most effective when begun as early as possible.

Read the entire article: Siblings of autistic children at a 20 times higher risk.

If you are the mother of a child on the autism spectrum, have you ever felt guilty for your child’s condition thinking it was something you did or did not do that caused it? If so, check out this article on the autism mommy blame game.

What causes autism? As a mother of two children on the autism spectrum, that is the million-dollar question in my world. It has been nearly five years since I heard those words, “your daughter has autism,” and while I don’t know what causes autism, I do know what didn’t cause it — me. My daughter was diagnosed on the day before her third birthday, and in the past five years I’ve seen study after study come out that points to something the mother did, or didn’t do, as a cause of autism. This has caused many mothers of children with autism, including myself, to feel guilty.

Read the entire article: Autism: The mommy blame game.

New research shows six-fold risk of ASD in grandchildren of acrodynia survivors

SafeMinds calls on the pharmaceutical industry to remove mercury from all products, including vaccines.

Researchers from Australia have identified an ancestry of Pink Disease (Infantile Acrodynia) as a risk factor for Autism Spectrum Disorders. Pink disease was common in the first half of the 20th century as a mysterious illness affecting children between the ages of eighteen months and three and a half years. The disorder presented with apathy, irritability, and progressive loss of speech, symptoms very similar to those exhibited by children with autism. Nearly fifty years passed before a connection was made between the disease and exposure to mercury in teething powder, worm medications and diaper rinses. The disease developed in approximately 1 in 500 children exposed to the products and experts identified idiosyncratic sensitivity to mercury as the key risk factor.

The new study, published July 28th in the Journal of Toxicology and Environmental Health, investigated the hypothesis that autism can result from the interaction between mercury exposure and a genetic predisposition to sensitivity to mercury. Currently, 43 peer-reviewed studies support a link between mercury and autism, and experts agree that autism is caused by the interaction of genetic susceptibility and environmental exposures.

The Australian researchers, David Austin, Ph.D. and Kerrie Shandley investigated whether individuals with a known hypersensitivity to mercury were more likely to have descendants with an autism spectrum disorder. They surveyed 522 adult survivors of Pink Disease about the health of their grandchildren. They found that 1 in 25 of these grandchildren had an autism spectrum disorder compared to 1 in 160 children of the same ages in the general population in Australia, a staggering six-fold increase in relative risk. Dr. Austin had the following comment, “The large elevation in autism prevalence in this group of children was startling especially given that rates of other childhood disorders were at expected levels. The thing that differentiates these children from the general population, to which they were compared, is a family history of mercury sensitivity. We were simply blown away by the results.”

SafeMinds Board member Lyn Redwood RN, MSN whose son was diagnosed with mercury toxicity and autism calls on the pharmaceutical industry to once and for all remove mercury from their products, “The FDA has identified over 130 medical products that contain mercury and 7 vaccines that contain mercury. The continued use of these products in to the 21st century when safer and more effective alternatives exist is unacceptable and dangerous.”

For more information on the symptoms of Pink Disease and the overlap with autism please visit http://www.safeminds.org/news/documents/Acrodynia%20comparison%20combined.pdf or contact Lynsafemindsorg.

The kitchen is a natural learning environment. From organizing ingredients, to creating lists, and teaching basic math concepts, it’s not hard to imagine turning time spent cooking together into an incredibly fun learning experience.

Lay the Foundation
While any time spent cooking together can become a learning opportunity, do not introduce your child to cooking for the sole purpose of teaching. The key word is “fun!” Your child needs to be comfortable being together in the kitchen with you first, so if you haven’t begun the process, take steps to gradually introduce him to food, cooking, and sharing time in the kitchen. (Check out our earlier GFCF Cooking Together articles for some great tips!)

Don’t Forget the Food
It sounds silly to say “don’t forget the food,” but the point is simply this: There is no greater motivation to learn in the kitchen than for the end product to be the reward. This means making sure you choose foods your child loves to eat.

Basic Skills
One of the best things about using cooking to teach skills to our children with autism, is that it’s so easy to tailor the information and level of difficulty to meet their needs.

• Organization and Sequencing. Write each step of the recipe on a separate card, or list them on a dry erase board in simple terms so you and your child have a visual sequence of steps to follow. Make a list of ingredients and utensils you will need, then collect them and organize everything on the counter in the order in which it will be used. The extent of your child’s participation depends entirely on her ability and comfort level in the kitchen. If necessary, begin by asking her to find just one utensil and make it her “assigned” utensil. For example, her utensil could be a spoon and when that step is reached in the recipe, she has responsibility for stirring. Put a star next to the steps that she will complete.
• Sharing Together. This is a great time to implement strategies like turn taking and synchronizing actions together. Examples might be: “I’ll pour this, then you’ll pour that,” “I’ll get the mixing bowl, you get the spoon,” or “I’ll add eggs while you stir.”
• Verbal Communication. Keep a happy, chatty conversation going, even if you’re delivering a monologue. Remember that the idea is for you to model the steps and teach while you’re in the cooking process, whether your child is watching or actively participating. Every now and then ask a simple question and give him sufficient time to respond.
• Descriptive Language. While you’re talking, use as much descriptive language as possible to define colors, textures, tastes, and smell. Pause to let her experience and absorb the similarities and differences in ingredients.

Math in the Kitchen
Could there be a better place to teach essential math than the kitchen? This is the perfect opportunity to give real-world substance to abstract concepts. Depending on your child’s academic level, you can work fractions, measurements, addition, subtraction, multiplication, division, and even weight (if you have a kitchen scale) into any simple recipe.

• Counting. Count the number of times you stir, every time you add an ingredient, the number of steps in the recipe, the number of ingredients, etc. Make it a game by taking turns counting or by pretending you can’t remember the next number so your child can pitch in and help.
• Double the Recipe. Create the opportunity to teach addition or multiplication by doubling the recipe. Your child can count out loud, and physically measure and pour each ingredient twice, which gives you multiples chances to reinforce the concept. Make it more complicated by increasing the recipe by 1 1/2.
• Reduce the Recipe. On the flip side, teach subtraction or division by cutting the recipe in half.
• Fractions. Measure one cup of flour (or other ingredient), then measure again using half cup, third cup, and quarter cup measures. Talk about how they’re different. Demonstrate that you can pour two half-cup measures into one cup to equal the same amount. Another great visual method is to choose a food item that your child likes, whether several carrots or slices of bread, then lay one item out whole, cut another one in half and place it under the whole one, cut another one in thirds and place it directly underneath, etc.

TIP: You’ll need more than one set of measuring cups to show the relationships. You’ll need two half cups, three third cups, and four quarter cups.

Shapes, Sorting and Fine Motor Skills
Scholastic.com had a great lesson plan for teaching shapes and sorting. Complete directions can be found by going to their web site and searching for “fruit-shape kebabs,” but here’s the idea:

• Cut different fruits into shapes. Use any type of fresh or canned fruit and cut each one into a variety of shapes. For optimum sorting, you’ll need enough of the fruit to cut each one into the same shapes. Ultimately, the fruit will be made into kebabs, so plan to have enough pieces cut to make several kebabs.
• Sort by type of fruit. Talk about their different colors, textures, tastes and uses in cooking.
• Sort by shape. This gives you the opportunity to teach different shapes. You can also compare the cut shapes to the original shape of the fruit.
• Separate the fruit into piles. Decide how many kebabs you’re making and create a pile of fruit for each one. Count as you divide the fruit into separate piles.
• Slide each pile of fruit onto a bamboo skewer to make kebabs. Be careful about safety issues if the skewers have sharp points, but if it’s appropriate for your child, placing fruit on the skewer helps fine motor skills.
• Enjoy the snack! Serve with a GFCF yogurt for dipping, sprinkled with some raw sugar on top. De-licious!

Spending time in the kitchen together offers all sorts of opportunities for learning, from academics like math, history (origins of food), or geography (when using ethnic foods), to working on sensory issues or social skills. The key here – and everywhere – is to make learning fun for the child!

Read More Online! Our companion e-article (available only to subscribers during July & August) focuses on converting recipes to GFCF. Plus, look for a delicious, nutritious warm-weather recipe to try out with your child. www.AutismDigest.com

AADigest Exclusive – Reprinted with permission from a 2011 column on “GFCF Cooking Together with Kids” offered by the Autism Asperger’s Digest magazine. This selection is featured in the July/August 2011 issue. Find previous GFCF Cooking Together articles at the Article Library page of the AADigest website, www.AutismDigest.com.

Copyright © 2011 Autism Asperger’s Digest. All Rights Reserved.

Photo: Kate Tomlinson/Flickr

The battle of the budget, deficit reduction and the debt ceiling rages on in Washington. The proposed Medicaid changes could have a significant impact on adults with autism. The following is an executive summary by the Autistic Global Initiative (AGI) concerning the proposed Medicaid changes:

Executive Summary: Response to the Advanced Notice of Proposed Rule Making for CMS-2296-P, Medicaid Program Home and
Community-Based Services (HCBS) Waivers

Submitted by A Four-State Alliance for ASDs Adult Community Housing & Living and The Autistic Global Initiative (AGI)

This executive summary responds to the ANPRM, detailed in CMS-2296-P. While in some instances the proposed rule change is supportive of the populations we represent, there are several instances where sweeping rule changes negatively impact individuals with autism spectrum disorders (ASDs) and related disorders, and do not afford the nuanced diversity of needs and supports that the terms “person-centered” and “community-based” imply. For a copy of the full letter, see: http://www.autism.com/pdf/response/agi_medicaid_response_rev.pdf.

Participants in this executive summary and the full comment letter have come together for a specific purpose: to offer a collaborative statement that combines multiple perspectives from the autism community. In doing so, we offer commentary that includes self-advocates with ASDs, parents of individuals with autism, service providers, and professionals working in the autism and developmental disability fields. Although we hold a variety of opinions and beliefs, we find the process of understanding one another to be our strength. We share the fundamental values that housing options for our citizens with ASDs and other developmental disabilities must support individuals’ safety and security, enable them to enjoy meaningful, productive lives, recognize their value within the broader community and promote choices for them and their families.

Our position is simple: one size does not, must not and cannot fit all. Policies and settings must recognize the heterogeneity and characteristics of individuals with autism and provide appropriate evidence-based supports. We need more quality options as they relate to design, service delivery and training. Key principles for housing options must support the individual’s daily life choices, interactions with those without disabilities and accessibility to the broader community. Options must take a multidimensional approach, including the use of technology. Policies that rule out entire housing models cannot be described as person-centered.

With the rapidly increasing population of adults with ASDs and our country’s fiscal challenges, we must encourage not discourage innovation now more than ever. Greater demand and fewer government resources have resulted in a “New Services Paradigm” (NSP) now being implemented, which shifts 24/7 support resources to those who are most in need; whose support requirements reflect that they are either a danger to themselves or to others; or who are at immediate risk of becoming homeless.

For those whose needs are not as severe, they will be asked to stay at home much longer with their parents, their siblings or other extended family. This group will be offered a menu of service packages and options to assist their families in long-term care, either within the family home or in the community. The result: families will be operating as case managers and service providers. Proper training by support brokers/coordinators in self-determination and self-direction models will be indispensible. In order for the New Service Paradigm to function, individuals with disabilities, their families and the universe of support providers at home and in the community must be informed, trained, empowered and well prepared to successfully navigate daily life and long-term security in the home and community.

Summary of Other Comments on CMS-2296-P:

• Changes should not result in a diminution of current services and supports.
• Settings created must recognize the characteristics of individuals with ASD and provide appropriate evidence-based supports for effective daily life skills training and behavioral therapies.
• Intentional communities can simultaneously address several societal needs.
• The current fiscal environment is not a time to discourage innovation in either design or service delivery.
• Many individuals already use waivers for intentional or agricultural communities. In addition to those who already use waivers for intentional or agricultural communities, others participate in such communities while on the waiting list for waivers. Neither group should be forced to choose between their home and accepting a waiver.
• The purpose of HCBS waivers is to promote choices for individuals. Choice should rest with the waiver recipient and not be dictated by policy.
• Assisted living models should not be arbitrary, by becoming limited to those of a certain age. Assisted living options should be available to those who choose them and for whom they are appropriate, regardless of age.
• In many cases, models that separate control of the housing from services offer greater stability and flexibility for the individual.
• Successfully transforming a person-centered plan to a self-directed life requires weaving existing programs and funding streams with natural supports into new patterns. The move to person-centered planning gives individuals, their allies and families unprecedented ability to direct their futures. To coordinate these elements, all affected require training about what is both positive and possible.
• “Autism One-Stops” could fill a niche by acting as a focal point for training of service providers. In so doing, Autism One-Stops answer the call of Advancing Futures for Adults with Autism (AFAA), representing a collaboration of 14 organizations, and the AFAA National Public Policy Agenda, which prioritizes the training of direct care workers to provide vocational and residential assistance to adults living with autism.
• The standard audit process is the best way to achieve compliance. Training is needed to ensure providers successfully play by the rules.
  Providers need to have a way to cover the cost of staff and family trainings for groups of parents if compliance is to improve.
  CMS must avoid cutting hours and reimbursement rates if health and safety are to be maintained and experienced providers are to remain in the field.

To learn more about AGI, visit www.autisticglobalinitiative.com.

Photo: VinothChandar/Flickr

I’m straying from my usual autism-themed post to discuss something that is near and dear to my heart – giving blood. Over the years I’ve donated blood several times and after the birth of my son I was the recipient of two pints of blood graciously donated by another. Tomorrow, a blood drive will be held in memory of Bowen, a beautiful infant that touched many in his short life.

I came to know Bowen through his mother, Corrina, a former colleague of mine at Attachment Parenting International (API). Corrina and her family have organized the first annual Team BoHawk Blood Drive, which will be held tomorrow in Indianapolis, IN. Amazingly, all 120 appointments have been filled. However, I wanted to encourage anyone that is able to give blood to visit their local donation center and give blood in memory of Bowen.

• Red Cross
• America’s Blood Centers

For more information, read Julie Artz’s post, Give Blood in Memory of Bowen. Julie is also a former colleague of mine at API and reached out to some of her blogging friends to help spread the word about the importance of giving blood and how you can help honor Bowen’s memory no matter where you are.

For the entire story, please read Corrina’s blog – Bowen Joseph.

Photo: TheKarenD/Flickr

I recently read of a study about childhood-onset complex partial seizures and the autism spectrum. Although the topic of autism and seizures interests me greatly, this one really caught my eye as my son has been diagnosed with complex partial seizures.

In the article, Characterization of childhood-onset complex partial seizures associated with autism spectrum disorder, researchers from Saga University in Saga, Japan examine the relationship between complex partial seizure disorder and autism spectrum disorder.

The following is the abstract of the article:

“Autism spectrum disorder (ASD) has a close relationship with epilepsy. A previous study showed complex partial seizures (CPS) to be the most frequent type of epileptic seizures in cases of ASD. Patients with childhood-onset CPS were retrospectively studied to investigate the prevalence of ASD and to characterize the association between CPS and ASD. The study cohort comprised 86 patients with CPS manifesting at 1 to 9 years of age. Symptomatic CPS and Panayiotopoulos syndrome were excluded. Patients with ASD (ASD group) were compared with those without ASD (non-ASD group). Of the 86 patients with childhood-onset CPS, 36 (42%) also had ASD. This ASD group was predominantly male (68.6%), with higher rates of intellectual disability (69%), and reported frequent seizures (60% had monthly or more frequent seizures). CPS without secondary generalization were more common in the ASD group (69%) than in the non-ASD group (36%), as were frontal paroxysms on EEG (54.5% vs 30%, respectively). In the non-ASD group, 82% of cases had been seizure free for 2 or more years, in comparison to 50% in the ASD group. ASD is frequently associated with childhood-onset CPS. Male gender, cognitive deficits, frequent seizures, and frontal paroxysms are risk factors for the association of ASD with CPS.”

My son’s seizures manifested in the 1st grade and he was diagnosed in the summer of 2008 at the age of 7, about a month shy of his eighth birthday. When it comes to the risk factor he’s in the predominant group (males) and had frequent seizures prior to medication but did not exhibit frontal paroxysms on his EEG nor does he have an intellectual disability.

Unfortunately I can’t delve further into the research as the full text of the study isn’t available as a free download. It is times like this when I miss being a student that had access to a plethora of scientific studies. Perhaps I’ll head to the local public library this week and see if I can get a hold of a copy to read.

Photo: pablosanz/Flickr

Yet another busy week here in The Autism Education Site household. We are busy preparing for our upcoming move and although it is still over a month away, we are starting the prep work now. As I usually do during my busy times, I’ve found a press release that may be of interest to you. Enjoy!

Treatments Show Promise in Reducing Autism-Related Behaviors, But Some Have Significant Side Effects

Some medical and behavioral treatments show promise for reducing certain behaviors in children with autism spectrum disorders (ASDs), but more research is needed to assess the potential benefits and harms, according to a new report funded by HHS’ Agency for Healthcare Research and Quality. The research results were published online in the journal Pediatrics.

The comparative effectiveness report found that two commonly used medications – risperidone and aripiprazole – show benefit in reducing some behaviors, including emotional distress, aggression, hyperactivity and self-injury. However, these medicines are associated with significant side effects, such as rapid weight gain and drowsiness. The review found that no medications used for ASDs improved social behaviors or communication skills. The report also found that several medications show promise and should be studied further, but that secretin, which has been studied extensively, has shown no effectiveness.

Children with ASDs have difficulty in social interaction, behavior, and communication. Some children with ASDs may also have impaired cognitive skills and sensory perception. Based on limited evidence, behavioral interventions also showed promise for improving some symptoms and behaviors, but their effects varied. For example, early intensive behavioral and developmental interventions seemed to improve cognitive performance, language skills, and adaptive behavior in some groups of children, the report found.

Other interventions, which focused on parent training and cognitive behavioral therapy, may be useful for children with ASDs to improve social communication, language use and potentially symptom severity, researchers said.

“Autism spectrum disorders are frustrating and challenging for patients, their families and caregivers,” said AHRQ Director Carolyn M. Clancy, M.D. “This report will help parents and clinicians understand their options and design a course of treatment that is consistent with their goals and values.”

Researchers at the Vanderbilt Evidence-based Practice Center in Nashville, TN, who prepared the report for AHRQ, noted that further research is needed to identify which children are likely to benefit from particular interventions. The authors also were critical of the fact that current studies contain few comparisons of medical interventions with behavioral interventions as well as combinations of the two, despite the fact that most children undergo multiple treatments at the same time.

Because of these limitations in the available evidence, researchers were not able to compare treatments and interventions to each other. In addition, they noted that every case of ASD is different and did not conclude that one type of treatment is superior.

ASDs – which include autistic disorder, Asperger syndrome, and pervasive developmental disorder-not otherwise specified – affect an estimated 1 in every 110 children in the United States. Treatment goals for ASDs often focus on improving social communication and addressing certain behaviors. Other treatments also target anxiety, attention difficulties, and sensory difficulties. Goals for treatment often vary by child.

The report, Comparative Effectiveness of Therapies for Children with Autism Spectrum Disorders, is the latest comparative effectiveness review from AHRQ’s Effective Health Care program is available at http://www.effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productid=656. The Effective Health Care program sponsors the development of evidence reports and technology assessments to assist public- and private-sector organizations in their efforts to improve the quality of health care in the United States. The program, authorized by the Medicare Prescription Drug, Improvement and Modernization Act, represents an important Federal effort to compare alternative treatments for health conditions and make the findings public. The program is intended to help patients, doctors, nurses, pharmacists and others choose the most effective treatments. Information can be found at http://www.effectivehealthcare.ahrq.gov .

SOURCE Agency for Healthcare Research & Quality

Last week I discussed a new petition by the Autism Research Institute supporting the inclusion of an ICD-9 diagnostic code for wandering behavior. As a parent of two children who are prone to wander, my immediate thought was, “hey, this is a good idea.”

However, today I came across a video by thautcast on YouTube that provides a different outlook on adding the wandering code. In the video, the author describes his experience with a diagnosis (of any type) leading to the individual being ignored. The video is about eight minutes long but I highly recommend that you listen to it all as he does provide some good insights into the possible downsides of a separate diagnostic code for wandering.

What do you think?