Melissa Hincha-Ownby's Blog

Posted by Melissa Hincha-Ownby

The concept of autism recovery is popular, albeit controversial. Some in the autism community do not feel that autism recovery is possible as being autistic is just a part of the normal human continuum. Others in the community feel that not only is recovery possible, all steps should be taken to pursue recovery. Then of course there are those who fall somewhere in between.

For those that are interested in learning more about autism recovery and interventions, the Autism Research Institute (ARI) has just launched the Autism.tv website. According to the ARI press release on the topic, “The website is intended to demonstrate to parents, physicians, and research scientists that recovery is a reality for a significant percentage of children with autism.”

The website will feature links to videos that are posted on popular sites like YouTube, video clips of news shows that discuss autism recovery or intervention, personal blog articles of interest as well as online news stories. If you have a link that you would like to submit to the Autism.tv site, ARI is accepting submissions via email to submit@autism.tv.

In addition to user-submitted links, the Autism.tv website also features many of the Defeat Autism Now! Webcasts. Current webcasts available include Recovery is Possible, Triggers of Autism, Vaccinations, Diet, Chelation, ABA and Other Therapies, Future Pregnancies and many more.

In looking at the website, one thing that I find missing is information from adult autistics. Autism intervention is not new and many adult autistics have taken the time to discuss their view of the therapies that they went through as children. I think that adding this type of information to the Autism.tv site would provide a more balanced view of the autism recovery subject.

Source: ARI Press Release

Posted by Melissa Hincha-Ownby

Going to see a movie with an autistic individual can be difficult due to the sensory-sensitive nature of many people on the autism spectrum. From the dark theatre to the loud and booming sound systems, a movie can quickly become overwhelming. The Autism Society of America (ASA) in cooperation with AMC Entertainment is addressing this issue by launching the Sensory Friendly Films pilot program.

From the ASA press release on the program, “In order to provide a more accepting and comfortable setting for this unique audience, the movie auditoriums will have their lights brought up and the sound turned down. Additionally, AMC’s “Silence is Golden®” policy will not be enforced unless the safety of the audience is questioned.”

The program will be debuting this month with special screenings of Star Wars: The Clone Wars. Star Wars fans will be able to take part in the program beginning on August 23 at 10:00 am local time in one of 11 theatres across the United States.

The following theatres will be participating in the pilot: AMC Barton Creek 14 in Austin, TX, AMC Columbia Mall 14 in Columbia, MD, AMC Ridge Park Square 8 in Brooklyn, OH, AMC Dutch Square 14 in Columbia, SC, AMC Castleton Square 14 in Indianapolis, IN, AMC Studio 30 in Olathe, KS, AMC Lynnhaven 18 in Virginia Beach, VA, AMC Deer Valley 30 in Phoenix, AZ, AMC Mesa Grand 24 in Mesa, AZ, AMC Mission Valley 20 in San Diego, CA and the AMC Hoffman Center 22 in Alexandria, VA.

For more information on the program, contact your local participating AMC Theatre.

Posted by Melissa Hincha-Ownby

August and September typically mean back-to-school time. For parents of children with an autism spectrum disorder, this time of year can be quite hectic and even stressful. In order to help ease the transition, I wrote about the Autism Back-to-School Checklist that I use to get our entire household on target for the start of school. With two children on the spectrum, I have double the fun. School is already in full swing for us and thankfully the transition has gone smoothly. The process really got me thinking about education choices for children with autism.

Most parents immediately think of sending their children to school, whether the child is on the autism spectrum or not. Autistic children can be educated using several different classroom models. The Individuals with Disabilities Act of 2004 (IDEA 2004) states that all children must be educated in the least restrictive environment (LRE). In terms of special education, this comes in an inclusive setting. A child with autism is simply educated alongside their typically developing peers in a general education classroom.

An intermediate level of education comes from mainstreaming; a child spends part of his day in a general education setting and the rest in a self-contained classroom. On the opposite end of the education spectrum for inclusion is self-contained. A self-contained classroom means that your child with autism is in a special classroom with other children with special education concerns.

Thinking of these education models reminded me that many parents choose to homeschool their autistic child. Homeschooling is a great choice and many parents who choose to do so find that their children are happier and actually learn better at home. As autism becomes more prevalent, the educational choices for our children will only increase.

Posted by Melissa Hincha-Ownby

The Autism Asperger Publishing Company (AAPC) publishes a vast array of books and products related to autism and Asperger’s Syndrome. Elaine Larson is one of the authors who have found success working with the AAPC. Larson’s grandson has inspired her to write The Chameleon Kid, I Am Utterly Unique and The Kaleidoscope Kid. All three of these books are geared towards the child with Asperger’s Syndrome as opposed to parents or educators.

The Chameleon Kid – Controlling Meltdown Before He Controls You is written for children aged four through 10 and is Larson’s newest release. Larson understands that children with Asperger’s Syndrome are more prone to meltdowns and offers readers a way to cope with an impending tantrum with a goal of gaining control of the meltdown before the meltdown gets control of the child.

I Am Utterly Unique – Celebrating the Strengths of Children with Asperger Syndrome and High-Functioning Autism was published in 2006. The book is an A to Z look of some of the positive traits of children with Asperger’s Syndrome. This book is designed to help children with Asperger’s Syndrome increase their self-esteem while giving peers some insight into some of the child’s unique quirks.

Published in 2007, The Kaleidoscope Kid is also designed for children aged four through 10. Larson compares the Aspergic child’s intellectual gifts and other unique characteristics to a person looking through a kaleidoscope. From the AAPC book description, “The reader is reminded that children with Asperger Syndrome and high functioning autism can proudly acknowledge that they are excellent, special and one of-a-kind individuals.”

Reading these three books is a great way for a child with Asperger’s Syndrome to learn a little more about his self.

Source: AAPC

Posted by Melissa Hincha-Ownby

The debate as to whether autism is a genetic condition, a result of an environmental trigger (like vaccinations) or a combination of both is being waged among autism professionals. No single study has concretely proven, or disproven, any one theory. Researchers are now turning towards Minneapolis, Minnesota for possible answers.

Statistics from the Minnesota Health Department show that approximately one percent of children in Minnesota have been diagnosed with an autism spectrum disorder. According to a report published on the MinnPost website, “The Minnesota Department of Education said that in the Minneapolis' early childhood and kindergarten programs, more than 12 percent of the students with autism reported speaking Somali at home.” The report then goes on to say that “more than 17 percent of the children in the district's early childhood special education autism program are Somali speaking.”

This is alarming, to say the least. However the increased incidence of autism among Somali immigrants is also being noted in Sweden. Some Swedish researchers are linking this to a possible vitamin D deficiency that is seen by those with darker skin and the lack of abundant sunshine in the Swedish winter.

Although nothing definitive can be surmised from these two situations, one thing is certain – no one knows exactly what causes autism. It will be interesting to see the research that comes out of the studies of Somali immigrants in Sweden, the United States and other countries. It would also be interesting to see the incidence of autism among Somalis in their native country.

Posted by Melissa Hincha-Ownby

Having two children on the autism spectrum, I see first-hand how my two thrive with a structured routine. The transition into summer was difficult but in the last few weeks we’ve all seemed to get into a groove. Of course just as things start to run smoothly, another big transition is coming up – back-to-school.

My son starts school on August 6 and my daughter the week after. That gives me about a week and a half to prepare my son for the start of the school year. He will be attending a new school this year so the transition is going to be even more difficult. We’ve visited the school campus twice already and just recently found out the name of his teacher.

Last year, in first grade, my son did not say his teacher’s name until about a month into the school year. He knew her name; he just refused to use it. The teacher was fine with it but this year, I’ve decided to incorporate the teacher’s name into our daily conversations. He knows who his teacher will be and we talk about what she might be doing to prepare for the school year to start. Hopefully he’ll feel more comfortable using her name this year.

Another step we are taking to prepare for back-to-school is starting our before-school and after-school routines. When we wake up in the morning, we go through the steps on our before-school picture schedule. Hopefully this preparation will help my children have a smooth transition into the new school year.

Posted by Melissa Hincha-Ownby

On July 16, 2008, Michael Savage made the following remark on his radio talk show Savage Nation: “You know what autism is? I'll tell you what autism is, in 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is." Savage has been considered a “conservative shock jock” but this statement went behind shock and was outright offensive to the autism community.

As a result of this statement, many national organizations rallied together to call for the cancellation of Savage’s show. AutismLink, the National Autism Association and several Autism Society of America chapters were part of this push to hold Savage accountable for his actions.

As a result of the media coverage of the event, several large advertisers pulled their support of the program including Aflac and DirectBuy. In addition to advertisings bowing out, stations across the United States that air Savage Nation have dropped the program from their lineup. Stations in Ohio, Virginia and Mississippi have all confirmed the cancellation of the show.

In addition to organizations geared towards family members of individuals with autism (like the NAA), the Autistic Self Advocacy network also spoke out against Savage Nation with a letter from Ari Ne’eman denouncing Savage’s statement as well as the support Savage has received from Talk Radio Networks which syndicates the Savage show.

All of this comes on the heels of a very public statement by Adam Jasinski of Big Brother 9 calling the autistic children he works with “retards.” Jasinski has since apologized for the statement, something Savage isn’t likely to do.

Posted by Melissa Hincha-Ownby

When my daughter was first diagnosed with autism in 2006, my mom suggested that I purchase her a medical alert bracelet. Her reasons for this were twofold: first, my daughter was prone to wander off. Even though there is always an alert adult around her, she’ll still wonder off if your back is turned. Second, she wasn’t very verbal. She didn’t know her name and often wouldn’t engage other adults. If she were to wander off without us noticing, she’d have been able to provide no assistance to anyone who found her.

I researched the various medical alert bracelets available and chose to utilize the services offered by MedicAlert. MedicAlert has been in business since 1956 and has a wide range of products available. One thing that I really liked about MedicAlert is that they don’t print any identifying information on the pendants. My daughter doesn’t understand social boundaries and may mistakenly think that if someone knows her name, then they must know her. Since her name is not printed on the pendant I don’t have to worry about this.

The way the MedicAlert program works is that basic emergency information is printed on the pendant. In my daughter’s case, the pendant has autism, asthma and egg product allergy printed. Her member identification number and a toll-free number is also engraved on the pendant. Emergency responders can call the toll-free number 24x7 to obtain my contact information or any other emergency information that they need.

Even though my daughter is now verbal I am confident that having the MedicAlert bracelet is a safety feature. I do not know how she would respond in an unfamiliar situation and her tendency towards anxiety may render her nonverbal. The MedicAlert bracelet offers me peace of mind.

Posted by Melissa Hincha-Ownby

The Autism Asperger Publishing Company (AAPC) is one of the United States’ largest publishing companies dedicated to books and other items that deal with autism spectrum disorders. The website has recently been updated with their newest releases.

The Hidden Curriculum 2009 One-A-Day Calendar

This desktop calendar is perfect for families, caregivers, teachers and therapists. Written by Brenda Smith Myles and Megan Duncan, the calendar is in its third year and is one of AAPC’s most successful items. The peel-off calendar gives readers a new social situation each day with tips on how to handle a person on the autism spectrum can handle one of these situations. The calendars sell for $15.95 and would make a perfect back-to-school gift for your child’s teacher.

In His Shoes – A Short Journey Through Autism

Written by Joanna Keating-Velasco, In His Shoes follows the story of 13 year-old Nicholas Hansen as he starts middle school. Middle school is a difficult time for Neurotypical students and even more so for a student with autism. Nicholas Hansen is one such student. The book is geared not only for parents and teachers but is also a perfect read for students ages 11-15.

Improving Speech and Eating Skills in Children with Autism Spectrum Disorders

Maureen A. Flanagan writes a fantastic guide for parents, teachers and caregivers of autistic children. The book helps to develop and implement a program working on oral motor skills in both the home and school. It is not uncommon for children on the autism spectrum to have low oral-motor tone; this book can help address this problem.

These are just three of the new releases from the AAPC. Two exciting books are coming soon: More Than Little Professors and The Chameleon Kid.

Posted by Melissa Hincha-Ownby

According to a press release issued by AutismLink, “the Pennsylvania legislature voted nearly unanimously in the affirmative for House Bill 1150 to mandate commercial insurance companies to cover some services for children with autism.” The bill, which was introduced by House Speaker Dennis M. O’Brien, will mandate that insurance companies provide up to $36,000 of coverage for certain autism treatments for children through the age of 21.

The bill did not pass through the House without some controversy. Autism Speaks, one of the nation’s most vocal autism organizations, hired their own lobbyists to work with Pennsylvania representatives. According to the AutismLink press release, the lobbyists “made several back-door concessions on the bill without the consent of Speaker O'Brien.”

The Autism Society of America as well as AutismLink and other Pennsylvania-based autism organizations rallied behind the Speaker to support his original bill which ultimately passed. Pennsylvania isn’t the first state to introduce legislation mandating insurance companies to cover autism spectrum disorders.

Earlier in 2008, I reported how my home state of Arizona passed an autism insurance bill which will go in effect in July 2009. The Arizona bill allows for up to $50,000 of coverage annually through age nine and then $25,000 through age 16.

The problem with autism coverage comes when insurance companies state that autism is an educational concern and thus school districts should be responsible for providing therapy. Many insurance policies directly state that no coverage will be provided for autism spectrum therapies or treatments. As more states adopt mandate insurance coverage for autism, more children will be able to get the assistance they need regardless of their parents’ financial resources.

Source: AutismLink

Posted by Melissa Hincha-Ownby

On June 19, 2008, the Autism Society of America (ASA) issued a press release detailing the Helping HANDS for Autism Act which was recently introduced in the United States House of Representatives. The bill received bipartisan sponsorship with Representatives from Indiana, New Jersey, Massachusetts, Pennsylvania and Texas introducing the bill.

According to the ASA press release, “The Helping HANDS for Autism Act (HR 6282) is a three-part legislative package designed to support families dealing with autism spectrum disorders, increase awareness among first responders and public safety officials and provide housing options and services for adults with autism.”

Autism spectrum disorders (ASDs) are being diagnosed at a rate of 1 in 150 children in the United States with some states reporting higher incidence rates. While many of today’s research and advocacy work is focused on young children with autism, family members of teenagers and young adults with autism and left wondering how to find transition services for their autistic loved ones.

The Helping HANDS for Autism Act (HR6282) will be working with a Housing and Urban Development (HUD) task force in order to create a housing grant program for autistic adults. While there are currently several living centers and residential programs available for adults on the autism spectrum, HR6282 and the HUD task force hope to create individual housing programs which support the adult while allowing them their independence.

It is important for those who provide services to families who have a child with autism understand that these autistic children grow up to be autistic adults. By looking forward and planning support services now, these families will be better prepared for the future.

Source: ASA Press Release

Posted by Melissa Hincha-Ownby

David Kirby, author of Evidence of Harm, has made a public request for all critics of the mercury and autism link to come to one of his upcoming discussions. According to an article published on the Huffington Post Blog, “I sincerely encourage any and all vaccine-autism skeptics, critics, agnostics and cynics living in the northeastern US to please consider attending one of these talks, armed with all of your most pointed, difficult and critical questions.”

Kirby will be speaking at Brown University on June 19, 2008 from 6:30 – 9:00 pm at the Salomon Center in Room 101. On Thursday, June 26, 2008, Kirby will be speaking at the New York University School of Law in Tishman Auditorium. His third discussion will be held on Friday, June 27, 2008 at Northeastern University. The discussion at Northeastern will be held at the Behrakis Health Science Building in room 10.

Kirby’s talking points include the Poling case, mitochondrial issues in regressive autism, new research, political statements regarding the autism epidemics and new study results correlating autism with heavy metal toxicity. While I am nowhere near the areas of his discussions, I am interested in seeing what becomes of them.

The vaccine/autism debate is hotly contested by those on both sides of the issue. Whether autism can be caused by vaccines containing mercury or whether heavy metal toxicity from these vaccines cause autistic-like symptoms may take some time to prove. Whatever the case, Kirby’s discussions will likely lead to lively debate on the issue.

Posted by Melissa Hincha-Ownby

Although there are many disagreements among parents and professionals in the autism community, a common agreement is that early identification of an autism spectrum disorder is important. If a child is suspected to have autism, the earlier that the parents know, the better the outcome usually is.

The Early Autism Study (EAS), run by McMaster University in Hamilton, Ontario, Canada, has been researching autism spectrum disorders and have determined certain characteristics that are present in children with autism at a young age. The study works with infants who are at risk for autism due to a sibling member having been diagnosed with an autism spectrum disorder.

According to the EAS website, “This study is a longitudinal study in which full siblings of individuals with autism, and a control group of low-risk babies, are tested from three months of age in order to identify early social perceptual and social cognitive delays that predict later autism diagnoses.”

The results of the study are meant to be used as a screening tool and not an elaborate and in-depth diagnostic evaluation. The tests are objective and do not require an autism professional’s personal experience and judgment in order to determine the results.

In an article published in Medical News Today, Mel Rutherford, an assist professor of psychology at McMaster University said “It appears that children with autism develop normally for six months, and then begin developing atypically. As typical children begin to accelerate in social development, the child with autism makes only minor gains."

By focusing on children this young, the team at McMaster University hopes to provide diagnosticians with an objective tools that can be used on children before they reach an age where autism becomes more distinguishable.

Sources:

Early Autism Study

Medical News Today

Posted by Melissa Hincha-Ownby

Details for the first annual Autism Summit 2008 conference have been announced. This international autism conference will be held from October 10-12, 2008 in Cleveland, Ohio. The event is being presented in partnership with Autism Today, University Hospitals and Rainbow Babies and Children’s Hospital and will feature a variety of well known industry professionals. Friday, October 10 will feature presentations on “The Science of Autism”. Saturday’s discussions will be about “Life, Leisure & Reality” and Sunday is dedicated to “Making Autism Work.”

Lori Ernsperger, Ph.D. will be presenting on behavioral topics. Ernsperger is a fantastic public speaker as I saw her presentation on picky eating at the 2007 Autism Society of America conference. Another highlight of the event will be a presentation by Carol Gray who is most recognized for her work with Social Stories. Gray will be discussing "The Next Generation: Social Stories, PowerPolnt, Movies and More!"

Conference attendees will also be able to see 19 year-old Taylor Cross, an individual with an autism spectrum disorder, discuss his documentary entitled “Normal People Scare Me.” According to the Autism Summit 2008 website, ““Taylor’s presentations are sometimes odd, very educational, and always entertaining!”

Registration fees for the event start at $125.00 for a student/individual with an ASD who wish to attend one day to $395.00 for a full-conference professional registration. For information on registration, contact Autism Summit 2008 by calling 1-866-838-3687.

For out-of-town attendees, special conference rates have been secured at the Renaissance Cleveland Hotel. The special rate, which is $124.00 per night, will be available until September 9, 2008. To make hotel reservations, please contact the hotel directly at 1-800-468-3571 and provide the following conference code: autauta.

Posted by Melissa Hincha-Ownby

Summer is rapidly approaching which means that the Autism Society of America (ASA) conference is around the corner. This year the ASA will be held in Orlando, Florida from July 9-12. This is one of the largest and most popular autism conferences but there are some other regional conferences which are worth attending.

Autreat 2008 will be held from June 23-27, 2008 in Bradford, Pennsylvania. Autreat is a unique autism conference as it is geared more towards autistic individuals themselves. Parents who understand and accept the concept of neurodiversity are also welcome to attend Autreat. Advance registration for the 2008 event must be received by June 12 and the pricing fees vary greatly. For more information, visit the Autreat 2008 Fees and Registration Form.

Future Horizons will be hosting the Annual Mid-America Super Conference in Dixon, Illinois on July 17-18, 2008. This conference will feature noted Asperger’s Syndrome expert Dr. Tony Attwood as well as Dr. Temple Grandin. Dr. Grandin is one of the most well-known autistic adults in the country. The registration fee for parents and family members is $155.00 for the two day conference and interested parties can call 1-800-489-0727 for more registration information.

Another popular summer autism conference is the “Back to School Autism/Aspergers Conference” which will be held on August 9-10, 2008 at the Pasadena Convention Center in California. Full conference information is as of yet available but I will follow-up once the details have been released.

There are also many more regional conferences scheduled throughout the summer. Contact your local chapter of the Autism Society of America as they may have a list of the conferences available in your area.

Posted by Melissa Hincha-Ownby

Parents of children with autism, and other disabilities, that reside in Arizona have been allowed to send their children to private schools by using the state’s school voucher program. These children, who have often failed to have their needs met through the public school system, can attend private schools that specialize in autism without their parents having to absorb the exorbitant fees.

The Arizona Education Association, as well as other Arizona civil rights groups, contested the voucher program as unconstitutional claiming that public schools suffer as a result. Parents of children who attend these specialized schools under the voucher program plan to ask the Arizona Supreme Court to look at the Appellate Court ruling.

Educating children with an autism spectrum disorder can be extremely difficult as what is best for one child may not work for another. Some parents, understanding their child’s unique circumstances, have opted to enroll their child in a school that focuses on educating children with autism. With annual fees running upwards of $20,000 for these private schools, many parents will be unable to pay to keep their children enrolled.

This is a controversial topic and one that has been encountered in states besides Arizona. It is difficult for those without a personal connection to a child with autism to understand the importance of this program to some families. Studies have shown that an appropriate education can lead to extremely positive results as the child grows into young adulthood. If this beneficial program is removed, the future for some of these children may be uncertain.

Posted by Melissa Hincha-Ownby

I have been working on several articles that are specific to teens and young adults with autism. While this isn’t my reality, yet, it is a reality for parents of autistic teens everywhere. Some teenagers will be able to go on to college like their typically developing peers while others will require 24x7 care. Determining if this care will take place in the home, either with assistance or without, or in a residential program can be a difficult decision.

I am hoping that my research into the issues that parents of teens with autism face will help families make an easier transition. Transitioning from teenager to young adult can be difficult for even the most typical family; these issues are compounded when a family has a child with a developmental disability, including autism. As with everything else related to autism, there is controversy surrounding some of the decisions that parents make.

I feel that it is important to involve the individual with autism in the decision as much as possible. If college is an option, work with your child to determine his comfort level with living at home or perhaps going away to college. If a residential program is more likely, consider taking your child on a tour of the facility. Just because a person has autism, even a non-verbal autistic, it doesn’t mean that they shouldn’t be a part of the process.

As my children grow, I get less nervous about the process of transitioning into young adults. With autism spectrum disorders as prevalent as they are today, I know that by the time my two grow up there will be fantastic options available for them.

Posted by Melissa Hincha-Ownby

Summer is rapidly approaching and families of children with autism are trying to figure out what to plan for the summer. Some families choose to have an unstructured summer but since so many children on the autism spectrum thrive on structure, more families are choosing a summertime activity.

For some children, their summer will be spent in an extended school year (ESY) program. The ESY program is tailored towards children who will likely regress over the summer break. It is usually several weeks long and provides a classroom environment to help prevent this loss of skills. Many children do not qualify for ESY services but those that do often benefit tremendously from the program.

Summer camps are a tradition for all children, including children with autism. There are many camps located across the United States that cater to children with a variety of developmental disabilities, including those on the autism spectrum. To find a camp near you, read my Autism Summer Camps article.

Another great place to find summer time activities is through your city or county’s parks and recreation department. Parents everywhere are looking for fun classes and these will provide your child the opportunity to learn alongside their typically developing peers. Many parks and recreation departments are familiar with the unique challenges of children on the autism spectrum so be sure to mention this when you register your child.

Summers can be difficult in my house so I’ve already begun my search for fun activities for both of my children to help ease the transition out of school and into summer.

Posted by Melissa Hincha-Ownby

When a child is diagnosed with an autism spectrum disorder, many parents immediately turn to the internet in search of information. The following three articles that I have written here at Suite 101 are a fantastic resource for parents looking for information on their newly diagnosed child with autism.

Exploring the Autism Spectrum

This article discusses the differences between the five conditions that fall under the umbrella of autism spectrum disorders. Autistic disorder, sometimes called Kanner’s autism, is what most people think of when they hear the word autism. Childhood disintegrative disorder is a rare form of autism and is more common in males than females. Asperger’s disorder, named after Dr. Hans Asperger, is usually diagnosed later than the other autism spectrum disorders.

Pervasive developmental disorder not otherwise specified (PDD-NOS) is a diagnosis given to a child who exhibits some of the symptoms of autism or Asperger’s Syndrome, but not all. Rett’s disorder is another rare form of autism and is found almost exclusively in females.

Autism Therapy Choices

One of the first choices that parents have to make with regards to autism treatment is which therapy method to use. The three most commonly used therapies are applied behavior analysis (ABA), DIR/Floortime and relationship development intervention (RDI).

Autistic Parenting Books

The books listed in this article provide parents a great variety of information on individuals with autism. Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism, and Professionals Share Their Wisdom, Engaging Autism and Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Development Disorder, and Other ASDs are must-reads for parents of newly diagnosed children with autism.

These articles were written from my view as a parent of two children on the spectrum and represent the steps I took upon receiving the diagnosis.

Posted by Melissa Hincha-Ownby

If you ask parents of a child with autism about their eating habits, the large majority will confirm that yes, their children are picky eaters. This goes beyond the typical picky eating habits of a two year-old and often stretches well into childhood. It is not uncommon to have a five year old child on the autism spectrum that will only eat a handful of food items. Tactile defensiveness, a sensitive gag reflex and low oral motor muscle tone are just a few conditions that lead to this level of picky eating.

Parents are often concerned that the child isn’t getting adequate nutrition. Conventional ideas of supplementing via vitamins or the theory that the child will eat when he is hungry don’t hold true among these children. Many times there is no way to get a vitamin into the child as his sense of smell and taste are so strong he notices if something is being snuck in to a favorite food.

The most severely affected children may end up with a feeding tube in order for them to take in an adequate intake of calories. Before that step is taken, however, many of these children have been through feeding therapy. The feeding therapy may occur with a nutritionist, occupational therapist or speech therapist and usually involves the gradual introduction of new foods into the child’s repertoire. This does not immediately mean eating the food, sometimes just having the food in the presence of the child without an adverse reaction is a huge step in the right direction.

Posted by Melissa Hincha-Ownby

Many school-aged children with an autism spectrum disorder are attending school under the guidance of an Individualized Education Plan (IEP). The IEP is an official document that is created with input from the parents, teacher and other professionals within the school setting. The guidelines for the IEP process are set forth by the Individuals with Disabilities Education Act of 2004 (IDEA).

When a parent of a child with autism is entering the school system, whether it is a public or private school, it is important that she understands the rights of her child. While some school districts are fantastic about providing the necessary services to ensure a child’s success, other school districts aren’t. With educational funding being a concern, cutting services is become more frequent. However, these services are an integral part to our children’s success.

If you are in a situation with a school district where you do not feel that your child is receiving necessary services, it is important to do research so that you can adequately advocate for your child. A knowledgeable and informed parent can go far in securing necessary services for your child. However, this isn’t always the case and outside help is needed.

This outside help comes in the form of professional educational advocates. These advocates, sometimes parents of special needs children themselves, are well versed in not only IDEA but the Americans with Disabilities Act (ADA) as well as the IEP process. Although their services are expensive, they are well worth it.

If you are faced with an upcoming IEP process, it is important to start your research now.

Posted by Melissa Hincha-Ownby

The Autism Society of America’s 39th annual National Conference and Exposition will be held from July 9 – 12, 2008 at the Gaylord Palms Resort in Orlando, Florida. This past week, the Autism Society of America (ASA) published a press release announcing the details for the 2008 conference.

The keynote speakers for the 2008 ASA conference will be Temple Grandin, Ph.D., Bob Hendren, D.O. and James Bell, Ph. D., BCBA. The conference will host three full days of workshops and presentations in addition to the pre-conference workshops. Individuals seeking BCBA, ASHA and CME continuing education credits will also have several seminars to choose from.

The ASA has teamed up with Quest, Inc to provide onsite respite care for families bringing along children on the spectrum. In addition to staying at the Gaylord Palms, conference attendees are welcome to stay at the nearby Fairfield Inn and Suites Orlando International Drive with free shuttle service provided to the conference resort. For families seeking to make a vacation out of the conference trip, Disney World is five minutes away from the Gaylord Palms.

I attended the 2007 ASA Conference and came away with not only a wealth of knowledge but a renewed sense of hope for the future. The ASA makes a point to hold presentations geared towards individuals with a variety of viewpoints on autism spectrum disorders. Whether you are looking for recovery choices or want to hear from a panel of autistic adults, the ASA conference can meet your needs.

For more information on the 2008 Autism Society of America conference, contact the ASA via email at conference@autism-society.org

Posted by Melissa Hincha-Ownby

Arizona joins only a handful of states that mandate insurance coverage for autism spectrum disorders. This legislation, scheduled to go into effect in July 2009, was the result of countless hours of hard work by parents of children with autism. Governor Janet Napolitano signed the legislation on March 21, 2008 to the delight of families across the state.

As it stands now, the majority of insurance companies exclude benefits to individuals with an autism spectrum disorder if the requested treatment is specifically for the autism. Even the staples of autism intervention, speech and occupational therapy, were excluded because they were for habilitation reasons, not rehabilitative. Insurance companies considered these to be educational in nature and felt that the school districts were responsible for providing these services.

Although the bill went through several changes over its lifetime, it still provides mandated coverage for Applied Behavior Analysis. There are a few restrictions on the law:

• The mandate only applies to companies employing more than 50 individuals and does not apply to self-insured businesses.
• ABA is limited to $50,000 per year through age nine and $25,000 per year through age 16.
• Treatments must be considered medically-necessary.

Even with these restrictions, the signing of the bill was considered a breakthrough for families struggling to pay for autism therapies for their children. It is not unheard of for families to take second mortgages on their homes to pay for the very pricey Applied Behavior Analysis therapy. Families in Arizona now have another choice thanks to parents advocating for their children.

Posted by Melissa Hincha-Ownby

Individuals with an autism spectrum disorder often have one or more co-morbid conditions. A few of the more common examples are ADHD, anxiety and sensory processing disorder. In some cases, prescription medication can improve the quality of life of the individual with autism. However, making the decision to try medication, especially when a child is concerned, can be difficult for some families.

This is a battle that I have faced in my family. I tend to look at health from a natural standpoint. I like to try homeopathic or natural remedies to problems. After several years of dietary intervention to help address some of my son’s concerns, my husband and I made the difficult decision to try a prescription medication to address his hyperactive and impulsive issues. He has ADHD in addition to Asperger’s Syndrome and according to his doctor, his ADHD symptoms are in the severe range.

Imagine my surprise when the medication made an instant difference in my son’s life. My son, the boy who could not sit through a meal, suddenly had the ability to sit down and eat a family dinner. Sure he’s young and he’d want to get up as soon as he was finished but he actually ate. Prior to that he’d take a bite, bound around the house, forget that he was eating dinner, get hyper-focused on another activity and have a meltdown when I’d ask him to come back to finish dinner.

There is no medication specifically for autism and the spectrum of conditions that fall under the umbrella of pervasive developmental disorders. There are, however, medications that can help address other concerns that come along with an autism spectrum diagnosis. The decision to medicate should not be taken lightly and done only after research and adequate discussion with a medical professional.

Posted by Melissa Hincha-Ownby

Every day is Autism Awareness Day in my world, however many countries around the world have set aside the month of April as Autism Awareness Month. April is quickly approaching and the news media is already buzzing with information about how the month will be honored. One of the big campaigns involves Toys R’Us and Autism Speaks. Toys R’Us will be collecting cash donations at all of its retail stores as well as accepting donations from customers of its online store. The donations will directly benefit Autism Speaks in its research funding efforts.

Another large company involved with Autism Speaks for raising awareness in April is bookseller Barnes and Noble. Approximately 500 bookstores will offer special story times including celebrities reading books that focus on encouraging “compassion and respect for individuals with autism and other disabilities.”

In addition to April’s designation as Autism Awareness Month, April 2nd has been deemed as World Autism Awareness Day by the United Nations. Countries around the world will be hosting special events to help bring about a better understanding of autism spectrum disorders and to accentuate the fact that early diagnosis and intervention is key.

Whether you’re an individual with autism or a family member of an autistic person, take a few minutes this month to participate in raising awareness about autism spectrum disorders.

Source: Autism Speaks Press Release

Posted by Melissa Hincha-Ownby

My son, who has Asperger’s Syndrome, had an interesting dental visit yesterday. He has fantastic teeth, except for one. The dentist was baffled that his first cavity was massive; the in-between the teeth cavity ended up being a tooth extraction for my son. The rest of his teeth look great and the dentist said that with a cavity of this caliber there are usually other problem teeth and called it an anomaly and a conundrum. That’s my son, a conundrum.

My son was given Versed, an oral sedative, to relax him prior to the laughing gas and local anesthetic. He was giddy prior to the procedure and was great until about 15 minutes after the procedure was over. Then the Versed started to wear off and he noticed the numb feeling in his lip, cheek, and tongue. That tingly feeling sent my sensory defensive son over the edge.

He started screaming, loud banshee-like screams and then hit, kicked, slapped, and head butted me. Mind you he was still quite floppy from the sedative but he was still hard to handle. For the next hour the dental assistants and the dentist himself would come in to help me distract him. This kind of reaction isn’t exactly uncommon with Versed but evidently my conundrum of a son was having a more dramatic response.

Once we were dismissed I spent the next two hours working on keeping him distracted. When it was all said and done he wrote me a very sweet letter that said “I love you Mommy, sorry for attacking you.” My heart just swelled with love for my sweet little boy as I explained to him that he wasn’t attacking me, the medicine was.

Posted by Melissa Hincha-Ownby

One of the main questions that continues to haunt the entire autism community is, “What causes autism?” Truth be told, there is no definitive answer. A few weeks ago I blogged on autism and vaccines and before that I discussed a few presidential candidates’ stances on support of autism spectrum disorders, this week I’m combining the two.

AutismLink, a company that provides news releases on autism spectrum disorders, has sent out an email to its subscribers commenting on John McCain’s belief that thimerosal-containing vaccinations are likely the cause of the increase in autism rates. According to ABC News’ reporter Bret Hovell, who AutismLink quoted in its press release, McCain said "It’s indisputable that (autism) is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines."

This is the most forthright statement that any presidential candidate has made with regards to autism. It is likely to cause a bit of a media flurry among those in the autism community as well. Recent reports have been released refuting the vaccine/autism claim. On the other side of the issue, a vaccine case being tried in Federal court has the government conceding that the plaintiff’s evidence was insurmountable.

It will be interesting to see what others in the autism community have to say on this comment. I will go back to my original stance, while it would be nice to know what causes autism I think far more effort should go into helping those living with autism day-to-day.

Source:

AutismLink News Release

Posted by Melissa Hincha-Ownby

The Autism One 2008 Conference will be held from May 21 – May 25 at The Westin O’Hare Hotel in Chicago, Illinois. The theme for the 2008 conference is Recovery Rising. From the Autism One website, “Recovery Rising is the undeniable emerging zeitgeist affirmed by the rapid advancement reaching beyond a diagnosis to the new prognosis of hope and recovery.”

The 2008 conference will feature a keynote address by Jenny McCarthy; McCarthy is an author, actress, advocate, and parent of a child with autism. Noted biomedical pioneer, Dr. Amy Yasko is also scheduled to present at the conference. Yasko will hold a three-hour symposium on biomedical interventions that help both children and adults on the autism spectrum.

Other highlights of the conference include a preconference workshop on “The Art of Special Diets”, a session dedicated to helping parents and professionals understand special education law and the IEP process, and an Arts Festival.

I have only attended one autism conference, the 2007 Autism Society of America conference, but I came away feeling refreshed and renewed. I highly recommend that anyone in the autism community, whether parent, caregiver, or professional, take the time out to attend an autism conference. The information gained can, at times, be overwhelming but in the end you will surely be pleased with your decision to attend.

For more information on registration for the Autism One 2008: Recovery Rising conference, contact the organization at (714) 680-0792.

Posted by Melissa Hincha-Ownby

Many children on the autism spectrum are also on the Feingold Diet. My family has been following Feingold plan for almost three years now. Some holidays can prove a bit tricky, Easter is one of these. Traditional Easter baskets are filled with candy and other sweet treats; however most of these items also contain artificial colors, flavors, and in some cases preservatives which are restricted by the Feingold plan. For families who follow the Feingold Diet, creating a safe Easter basket can prove to be a daunting task.

The Feingold Diet has been around since the 70s; thankfully there are companies out there that cater to those of us who have restricted our children’s diets to help with autism, ADHD, and other behavioral concerns. One company, Squirrel’s Nest, has been providing families with natural treats since 1980. Some of the Feingold-safe Easter products include traditional chocolate bunnies, jelly beans and bunny-shaped lollipops. Squirrel’s Nest is located in Middletown, Delaware but items are shipped throughout the United States. The company is only open to Easter orders for a limited time, for more information contact Squirrel’s Nest at (302) 378-1033.

Just because a child you know is on the autism spectrum and on a restricted diet like the Feingold Diet, it doesn’t mean that they can’t partake in traditional Easter treats. Thankfully companies like Squirrel’s Nest exist and allow these children to have chocolate bunnies and jelly beans like all of their friends.

Posted by Melissa Hincha-Ownby

One of the most hotly debated arguments among those in the autism community is whether the measles, mumps, and rubella (MMR) vaccination, and the thimerosal that was used to preserve it, is directly responsible for the increase in autism diagnoses seen in the United States. Repeated studies have been released confirming the statement that there is no statistically significant link between the MMR vaccination and autism.

For many parents accepting this as fact is simply impossible. A common thread among those who believe that their child has mercury-induced autism is that they can also be cured once the mercury is removed from their system. Accepting the idea that this is not possible is simply something that many of these parents do not want to do, and understandably so.

From my research as a parent, I do believe that some children with mercury poisoning present with autistic-like tendencies and even meet the clinical diagnosis for autism. These children who receive biomedical treatment can at times show vast improvement, some even losing the autism diagnosis. The question is whether the child truly had autism or just mercury-poisoning which masked itself as autism. There have been studies into heavy metal toxicity that support this statement.

One thing is certain – there will be some time before a definitive answer on this topic is accepted by all. I would never presume to tell a parent that no, the MMR did not induce autism in her child. I would also hope that another parent would not presume to tell me that it did cause autism in mine. My children were both different from birth, there was no defining moment in their past pointing to a date that they “turned autistic.”

Posted by Melissa Hincha-Ownby

I recently wrote an article entitled Autism and Sleep Disorders detailing four ways in which parents and caregivers can help induce more restful sleep among individuals with an autism spectrum disorder. One of the four ideas that I discussed was the use of melatonin, an over-the-counter nutritional supplement. In a news release published today, February 8, 2008, Vanderbilt University has confirmed the efficacy of melatonin use in assisting autistic individuals with sleep concerns.

Out of 107 children age 2-18 that were part of the study, the following results were noted. “Twenty-five percent of parents reported they no longer had sleep concerns after using melatonin, 60 percent of parents reported the sleep problems had improved, 13 percent still had major concerns and only 1 percent (one child) had worse symptoms” This study is the largest study of melatonin’s effect on sleep among the autistic population to date.

I can personally attest to the benefits of melatonin. Both of my children are on the autism spectrum and both have had sleep issues. Upon the recommendation from our pediatrician, we introduced melatonin over a year ago. Immediate changes were noticed in both of my children; my daughter would fall in the 25 percent of parents who no longer have sleep concerns. My son’s sleep has improved but is still not ideal.

I think it is great that a natural supplement such as melatonin is garnering research dollars. Vanderbilt University is one of the nation’s most well-respected universities. I, for one, am glad to hear the results of the study.

Source: Vanderbilt News Service

Posted by Melissa Hincha-Ownby

Everyone in the United States is aware that 2008 is an election year. Voters are asking candidates their positions on certain topics; autism is one of these topics. The Autism Society of America (ASA) has sent out a press release in advance of the Super Tuesday primaries. The ASA sent out a questionnaire to the candidates but only John Edwards returned a completed questionnaire. Since then, Edwards has dropped out of the competition.

Democratic candidates Senators Hillary Clinton and Barack Obama refer voters to their individual websites for their stance on autism. Senator Clinton’s website has an entire section dedicated specifically to autism – a few of her promises include setting aside $700 million per year for expanding research to identify the cause(s) of autism, providing grants for services for adult autistics, improving post-diagnosis care, and providing expanded teacher training among others.

Senator Obama’s website details his plan to empower Americans with disabilities including funding in the amount of $1 billion annually by the end of his first term. These funds will go towards autism research, autism awareness, and lifelong support services. Obama’s dedication to supporting autistics across the life span is in contrast to many of today’s organizations which focus purely on children with autism.

Senator John McCain met with the Advocates for Children’s Health Affected by Mercury Poisoning and pledges his support for federal research supporting autism causes and treatments including the hotly debated vaccine/autism controversy.

Other candidate’s positions were not available through the Autism Society of America press release.

Posted by Melissa Hincha-Ownby

The details for the 2008 Defeat Autism Now conference have been released and registration is open. From the conference website, “the conference devotes its agenda to teaching parents and practitioners how nutrition, intestinal disorders, detoxification, and other metabolic issues impact behavior, attention, speech and the general health of children on the autism spectrum.”

The 2008 convention will be held from April 3 – 7 at the Crowne Plaza Hotel at 2349 West Marlton Pike in Cherry Hill, New Jersey. Conference rates vary from a one-day admission for a parent of an autistic child for $150 to $425 for the three-day DAN practitioner track.

Highlights from the conference workshop schedule include a presentation by Dr. David Berger: Prevent Harm Now: How to Carry, Birth, and Raise a Healthy Child in a Toxic World and a two hour biomedical treatment question and answer session on Friday evening.

Both parents and practitioners, and those with and without prior DAN conference experience, will find that the workshops presented at the Defeat Autism Now 2008 conference are more than comprehensive. For more general and conference registration information, contact the organization at (866) 208-0207.

For information on the fall conference read: DAN Fall Conference in San Diego.

Posted by Melissa Hincha-Ownby

There is currently a lot of focus, by both doctors and autism organizations, to educate the public and other professionals about the red flags for autism spectrum disorders (ASDs). These red flags should raise a parent’s concern about her child’s development and they should be discussed with the child’s pediatrician.

The most commonly listed red flags for ASDs are lack of smiling by six months of age, no babbling by 12 months, lack of gestures like pointing and waving by 12 months, no words by 16 months, a lack of two-word spontaneous phrases by 24 months or a loss of speech or social skills at any age. I am thankful for the push to educate the public and practitioners about these first signs of a developmental delay.

I was a concerned parent but seeing as I had an older child and my daughter was able to make eye contact, her doctor just assumed that my son was talking for her. When I’d try to explain that he never tries to talk for her and that not only is she not talking, she also doesn’t understand what we’re saying, he’d just pass it off as if she was a late talker. This went beyond not talking but he didn’t see it.

Thankfully, I have the support of family members who work in public education and they led me to our local school district which does developmental screenings starting at the age of 2 years and 9 months. I had my daughter in there on that day and within a month she’d started preschool due to her delays. That started our journey towards diagnosis. I feel that it is important for all parents to know these early signs so they don’t lose out on precious time for helpful interventions.

Posted by Melissa Hincha-Ownby

The Autism Society of America (ASA) has opened up the registration for its 2008 conference. This year marks the 39th year for the ASA conference and exposition. From the ASA Conference website “The National Conference of the Autism Society of America is the only conference that addresses the range of issues, including early intervention, education, employment, behavior, communication, social skills, biomedical interventions and others, across the entire lifespan.”

The 2008 conference will be held at the Gaylord Palms Resort in Orlando, Florida from July 9 – 12, 2008. Registration fees start at $150 for autistic individuals and top out at $300 for on-site registration. In addition to being a great resource for parents and family members, professionals can also receive continuing education units (CEUs) at the 2008 Autism Society of America conference. Speech and hearing professionals can receive CEUs through ASHA/ASU, behaviorists can receive BCBA credits, CMEs are available for medical professionals, and teachers will also have the opportunity to receive CEUs for certain sessions. The credits which qualify for CEUs/CMEs will be noted in the conference brochure.

In addition to the wide variety of lectures and panels offered, the ASA Conference also features an expansive exhibition hall filled with companies that cater to the autism community. Exhibition space is expected to sell out soon; exhibitors currently registered include the Autism Asperger Publishing Company, Handwriting Without Tears, Inc, Jessica Kingsley Publishers and the Kennedy Krieger Institute/Interactive Autism Network (IAN). Conference information can be found on the Autism Society of America website.

Posted by Melissa Hincha-Ownby

As hard as it may be to believe, the autism community is quite divided. This division actually occurs on several fronts and center around a few key arguments. The main division, being played out among autism support circles, is regarding where autism research dollars should go. Some believe that the majority of money should be focused on cures for autism and autism prevention. The opposite side of this view is that autism isn’t curable, nor is it preventable, so the money should go towards researching ways to improve the quality of life of those with autism.

This division is frustrating from the standpoint of a consumer of services geared towards autism. Both sides have numerous scientific studies that back up their claims. For every pro-cure study there is an anti-cure study that sounds equally convincing. What I would like to see is a concentrated effort on raising autism awareness and helping those who are living with autism today. The millions of dollars being spent on autism prevention research do nothing to improve the quality of my children’s lives.

Sure, in theory, preventing autism would negate the need for spending money on autism treatments but that isn’t helpful for the 1 in 150 children in the United States currently diagnosed with an autism spectrum disorder. My wish is that the autism organizations that are put in place to support the community would come together and focus their time, money, and energy on a common set of goals. Helping those who need help now should be at the top of that goal list.

As the new Feature Writer of the Autism/Asperger’s Syndrome topic, I’m definitely interested in hearing what my readers have to say. Please feel free to leave a comment and tell me your thoughts on the autism divide.