Recently in the media, stories have been popping up about the characteristics of autistictemperament. Written to showcase how the general public treats those with ASD, these anecdotes help educate the reader on interacting with a person with autism.
Recently, as a result of uninformed decision-making, Daniel Ten Oever, a 9 year old boy with ASD from Ottawa was handcuffed by a police officer in his school during a significant meltdown.
Out of the many key characteristics of Autism Spectrum Disorder, the most difficult to deal with would arguably be what is called a “Meltdown”. Completely different from a textbook temper tantrum, an individual experiencing a meltdown loses all control, and experiences a total sensory invasion. While triggers of temper tantrums and meltdowns are similar (when a specific want is not met), a temper tantrum is a ‘controlled’ situation, meaning the individual does it to specifically get what they want.
The morning of the incident, Daniel had a minor falling out with another boy with ASD on the way to school, which resulted in the two of them being separated into different rooms while the school worked to diffuse the situation. Calming down momentarily, he left the room but soon lost control; he had begun to go into a meltdown.
The boy started to become aggressive: throwing objects, breaking things and lashing out at those around him. Daniel was taken into the principal’s office so his team (the principal, a therapist and two educational assistants) could help soothe him and ride the meltdown out. A police officer was next door in the vice-principal’s office, and upon hearing the commotion he entered the office, putting Daniel’s hands behind his back and handcuffing him. Upon questioning the officer, she responded that it was ‘standard procedure’ to detain anyone that posed a ‘threat’ to themselves or others- regardless of a disability.
Such behavior not only calls into question the education and training that Ontario police officers are receiving in the handling of incidents such as this, but why Daniel’s team had allowed the officer to ‘defuse’ the meltdown in an unproductive way. The main characteristics of a meltdown showcase the absolute loss of control of the individual, including when and how a meltdown winds down.
Unlike a temper tantrum where the episode stops as soon as the individual gets what they want, a meltdown escalates quickly and winds down slowly, regardless of the environment or situation. This means that using handcuffs to calm an overly agitated child down (with or without ASD) would do nothing but make this a traumatic experience for them.
It’s important to understand the ways that a meltdown is completely different than a common tantrum. A child in the middle of a meltdown is not looking for a reaction from others and has no interest in the social situation around them. They lack concern for their own safety, and they wind down slowly only in a secure and comforting environment. Labeling this simply as as childishmanipulation is not accurate or fair for a traumatized child on the autistic spectrum.
Daniel’s unfortunate incident should also bring to light that a situation such as a public meltdown should not be considered a ‘standard police procedure’ as his behavior was sensory and not environmental. These situations need to be handled with care, patience, and compassion for those who sometimes have no control over their behavior.
MacFabe, the Director of the Kilee Patchell-Evans Autism Research Group at Western University in London, Ontario, presented the findings of his team to the conference which focuses on the impact of nutrition on ASD; specifically, how microbes can be a contributing factor in the development of autism.
With such a small number of top scientists and pioneers in the area, the symposium was able to hone in on human and animal tested research which focused on the ways certain medications disrupt the digestive cycle. These disturbances of natural microbes (or the ‘microbiome’ as it has been termed) seem to be caused by the overuse of ‘antibiotics, disinfectants, C-section deliveries, and even diet’. Along with autism and other forms of ASD, the conference looked at how these biomes could be a factor in the increased prevalence of obesity, various cancers, and immunological disorders and neurodevelopmental conditions such as autism.
This new finding pushes the envelope for the nature versus nurture debate on what causes autism. The new available information significantly points in the direction of specific bacteria in our intestines contribute to brain function and behaviour. It appears that said bacteria could act as a switch of sorts in various neurodevelopments. MacFabe and his colleagues examined these bacterium and came to the conclusion that an overuse of antibiotics or disinfectants and a poor diet could severely alter the microbiome, turning the switch and altering the brain’s development.
While this new theory is incredibly progressive, it supports the idea that it is not solely nature or nurture that creates a person, but rather a mixture of the two. If something as simple as the overuse of antibiotics or aggressive disinfecting could have such a large impact on a child’s development, perhaps some changes to drug administration could be considered in the future after more studies have been conducted and this theory gains a better foundation. Until then, the search to determine the cause of autism continues as more treatment programs become available to those of all ages and levels of functioning.
With a population of over 1 billion people, it is estimated that China has 13 million children with autism.
Yet, the country lacks proper training and resources to meet the needs of these children. There are only about 100 doctors qualified to diagnose autism and only a handful of treatment centers (most of which focus on traditional eastern medicine practices).
Knowing this, it comes as no surprise that many have missed out on early detection, intervention, and education. Implementing these practices early in life are crucial in helping to manage the disorder. Chinese officials are recognizing that there is a strong need for more knowledge and resources regarding autism.
Big Fat Smile, an Australian based not-for-profit organization, has sought to change just that. At home, Big Fat Smile works with many communities by offering more than 40 preschools, play centers, playgroups, creative workshops, and outreach programs. They invision their facilities as magical places where children are driven to create a braver, brighter, and more creative world. They also pride themselves on being fun, diverse leaders and learners.
In recent years, Big Fat Smile’s CEO Bill Feld has been meeting with many educational leaders in Beijing, hoping to recreate the same ideas in China. It has become apparent that there is an overwhelming need for more qualified professionals. Their strategy is to recruit highly motivated individuals in the child’s life, such as the parents and families, and provide the necessary skills and techniques so that they can give their children a better future.
Along with the University of Wollongong, Big Fat Smile has developed a training package geared towards families, to help bring the best of western research. If approved, the Chinese government will spread this across the entire country. This will allow greater accessibility to quality materials. This organization’s success in Austrailia will hopefully provide the template for changing social policy and the lives of many people.
Genetics have always been a highly-debated and prime topic for discussion within autism research.
In an earlier blog post, we covered a twin study from the United Kingdom, which suggested that genes, as opposed to environmental factors, play a significantly larger role in influencing autism spectrum disorder.
Now scientists have zeroed in on one single, individual gene, CHD8. Genetically speaking, some physical characteristics, such as height or skin color, are polygenic; i.e. controlled by one or more genes. Others, like CHD8, are pleiotropic, which is when only one gene effects the expression of hundreds or even thousands of other genes.
This is what attracts the interest of so many researchers. It has the ability to influence or alter so much of the person’s genetic makeup. It also provides scientists with a better understanding of the disorder’s complexity. Since autism includes a spectrum of symptoms and characteristics, it only makes sense that thousands of genes would be involved.
In a study conducted in 2013, 116 autism risk genes were identified. Of those 116 genes, 47 were found to be targets of CHD8, which further supports the autism link.
Furthermore, research also suggests that CHD8 holds a vital part in 2 stages of development: gene regulation and neuronal signaling. This gives scientists some direction on where to start investigating. They hope to locate possible targets and, in the future, develop new drugs.
Several studies in progress are investigating the importance of this particular genetic site. They believe it is an entry way to discover the full genetic map, which can lead to a more complete understanding on the neurological intricacies and behaviors of autism spectrum disorder.
Further research will involve looking at live animal models such as mice and zebra fish who they have similar neuro-development to humans, including as the binding site to CHD8. To find further information, feel free to read the original article on the Simons Foundation Autism Research Initiative (SFARI) website.
Most of us would be proud to draw an attractive map of our neighborhood or maybe a general sketch of our hometown. Being able to recall the minute details of a building or landmarks takes special skill.
For the autistic son of a college professor, an astounding knowledge of geography is second nature. An 11-year-old boy from New York became an online sensation (and rightfully so) within a few hours after a few amazing photos surfaced. He casually walked into his father’s classroom and started to draw a map of the world…from memory! The college students continued to watch in awe while witnessing such an impressive display of his photographic memory.
It soon became very popular throughout the Internet when Reddit user, Bobitis, posted the picture online. He first learned about this incredible story from his daughter, one of the students in the classroom. They were extremely impressed with the boy’s eidetic memory but also the accuracy and details he included. The kid was so meticulous with his drawing that he climbed on chairs to reach the top of the whiteboard. He also included small islands that were represented by teeny tiny dots.
He’s not the first autistic artist to display this type of impressive photographic memory. Many people with autism spectrum disorder show high proficiency in visual skills, music, mathematics, and art. In 2009, UK artist Stephen Wiltshire sketched a 20-foot, panoramic skyline of New York City after only one helicopter ride. It was displayed at the Pratt Institute of Art in Brooklyn and attracted a lot of attention. Like the 11-year-old boy, many were astounded by his ability to capture great detail in such a short amount of time.
Although he has still yet to be identified, we know that the boy does have autism and is the son of a college professor. We can all agree that this digital notoriety is more than well deserved. Congratulations to the unknown genius! You have officially wow-ed the world with your remarkable abilities.
Our mission to connect with the autism community in Africa is well underway with a visit from a Ghanian representative.
ICare4Autism along with Morgan Jacobs met with Afua Akwaah on Monday, April 27 to discuss moving forward with the Ghana Initiative. Ms. Jacobs, a Ph.D. student in Special Education from Colombia University Teacher’s College, discussed with Ms. Akwaah how to best strengthen the support for children and young adults with autism in Ghana.
Jacobs will be traveling to Ghana during July and August to orchestrate workshops for locals to attend. With the help of ICare, both women will be joining Echoing Hills Village, a disability support organization within communities of Ghana. Echoing Hills serves a wide variety of special needs individuals within the country of Ghana, both mental and physical; autism is just one of the many disorders included.
ICare is in the process of developing workshops that will equip the community with up-to-date knowledge about how to properly educate and care for the autistic. Ghana currently has a largely underserved special needs population. Many who struggle with disabilities are shunned from mainstream society and forced to live on the streets.
Autism Spectrum Disorder is known to affect about 1% of the total world’s population. However, resources, education, and awareness is not so readily available for all. But Zemi Yenus, mother of two, was determined to give her son a better chance.
Yenus travelled to Los Angeles, CA where she put down roots and became a successful cosmetologist. In 1996, she decided to take her business back to her hometown of Addis Ababa and opened Ethiopia’s first licensed beauty school, Niana School of Beauty, with 6,000 students.
Although professionally she was succeeding, at home it was a slightly different story. Her son Jojo was not developing at the same pace as his other brother. While in California a doctor explained her son was simply a late talker. It wasn’t until they took a trip to the UK that he was diagnosed with autism. Like many parents, she felt helpless and didn’t know what to do.
At this point Yenus did everything she could to learn about the disorder. She soon developed a teaching method that incorporated the Ethiopian alphabet and sounds. The Abugida Fonetiks technique combined sounds and visual images to help the child read, write, and speak.
After a few years, Yenus founded the Joy Center, the first school specializing in teaching children with autism. Jojo was her first student starting at the age of 8 years old. Within a year his communication became stronger and he was able to say “mama.” Then came a very happy moment, wherein Jojo uttered “love you, mama.” This commemorated a truly joyous occasion for the family and a great accomplishment.
Now the school caters to 80 children who have access to music classrooms for social international and occupation therapy rooms to help strengthen fine motor skills.
Yenus’s successful achievements with her son caused quite a buzz around the town. The stigma surrounding autism and learning disabilities has changed tremendously in her area. What was once thought to be witchcraft or otherworldly, has now gained a far better understanding and acceptance. Even the Ethiopian government supports equal rights for all disabled individuals.
Her love for the school children eventually pushed Yenus to give up her business in the name of autism advocacy. Soon she developed new techniques and provided educational resources in her community. In the future she hopes to provide for all children in need within her country and within Africa. Here at ICare4Autism, we too support international global awareness and better resources. We have started an Autism Africa Initiative which has teamed up with the Karisa Foundation in Ghana. For more information please visit http://www.icare4autism.org/global-autism-center/autism-africa-initiative/
The Autism Care Nepal Society (ACNS) is on the ground in Katmandu working to provide relief for special needs Nepal citizens and their families.
Dr. Sunita Maleku Amatya is a member of the ICare4Autism Advisory Board, and currently serves as chairperson for the ACNS. Dr. Amatya has presented her research findings at one of our annual conferences in Jerusalem. Her presentation entitled “Autism Diagnosis a Challenge in Nepal” covered the limitations imposed on the diagnostic process. With little awareness or training, doctors in Nepal are often not able to recognize the symptoms of autism in a child.
Early autism diagnosis is crucial, since a child’s chance of success is increased dramatically with early intervention therapies. By working with special education leaders in countries that are most in need, ICare4Autism provides funding to increase the quality of autism education in developing nations.
In light of the recent disaster, the special needs community in Nepal is particularly vulnerable during the state of emergency. When sustaining injuries or going without food or water, the sensory depravation can be especially stark for a child with autism. The Autism Care Nepal Society operates through voluntary donations that fund the development of services for people with autism, their caregivers and their families.
In addition to raising autism awareness, the goal of the ACNS is to provide resources to educate and help with advocacy on the behalf of children with autism living in Nepal. In order to accomplish these actions, it is very important for ACNS to collaborate with organizations like ICare4Autism in order to share information and resources.
By making your tax-deductible donation to ICare4Autism’s Nepal Initiative, you are lifting the spirits of young people in this beautiful country who are relying on generous support from people like you.
Eleven-year-old Dorian Poe has an ambitious goal – to spread autism awareness throughout the world. But at such a young age he isn’t able to travel as much as he would like- so he did the next best thing and sent one of his dearest friends on an adventure.
Tikko is an adorable stuffed Webkin Polar Bear from the North Pole who dons a t-shirt with the words “Autism. It’s ok to be different.”
When Dorian was younger he suffered from symptoms common to those with autism. Symptoms such as a tic disorder, aggressive behavior, anxiety, and constant meltdowns were all a part of his life. It was very difficult for awhile, but with persistence and love from those around him, Dorian was able to overcome the symptoms.
Now he is symptom free, drug free, and excelling at school. Dorian and his mother, Christine, now have a message they wish to share with others. They hope people will start looking beyond the label of Autism and see that children with ASD are very gifted and have the ability to transform the world.
In 2013 Tikko packed his bags and left his hometown of Ontario, Canada for his great journey around the world. With him is a letter from Dorian outlining some characteristics of Autism. Once a new person gets Tikko in the mail they are asked to help raise awareness about Autism in their community by sharing Dorian’s message.
Within less than a year, the furry tourist met dozens of people in over 24 countries and is still making his way to even more places. Many have posted their encounters with Tikko on social media. From New York to New Mexico and even in Kenya, children and adults from different backgrounds have now helped raise awareness for autism.
Dorian and his mother would like to create an international outlet for Autism Awareness by uniting people around the world through unconditional love, compassion, and hope. Christine has received letters from people who are affected autism in their own lives, and also from others who have never heard of it before. Both have thanked her for the positive messages and the awareness they share with others.
When Li Li Juan’s young son was still nonverbal at 26 months, she brought the boy to a local hospital in her home province of Henan, China. Shortly after, he received an autism diagnosis.
Ms. Li is a middle school teacher, and she decided to become certified to teach kindergarten in order to educate her own child. She took matters into her own hands since her area had no special needs programs that were suited to help her autistic son.
Eventually Ms. Li discovered the Beijing Stars and Rain Education Institute for Autism, so she relocated when her son was five so that he was able to attend. After three months of receiving Applied Behavior Analysis, she observed significant improvements in her son’s ability to carry out tasks independently. She does, however, worry frequently about the boy’s future.
Her worries are shared by many parents in China. The densely populated nation has a distinct lack of trained professionals who specialize in autism therapy. Assuming that autism rates in China are statistically similar to other countries, it is likely that millions of children have with ASD are never diagnosed. In the entire country of more than 1.3 billion citizens, there are just four board-certified behavior analysts.
The discrepancy leads to many, many children with autism never receiving the therapy they need. Of the few options that are available to treat autism, services are only extended to children ages six and under, and no adult services are offered. The Chinese are still largely unaware of autism and most parents, teachers, and professionals are not able to identify the signs.
But the good news is that in recent years, autism awareness has become a growing trend in China. On May 17, which is China’s National Day for the Disabled, the government dedicated its focus to autism spectrum disorders. A significant amount of public funding has been appropriated toward autism research in recent years.
A set of large-scale prevalence studies, the first two ever conducted in China, are now being carried out to determine the rates of autism among 120,000 children studied. Scientists are also working to discover possible genetic links to ASD.
Chinese parents also have access to more tools than previously available to help their autistic children. The first Chinese mobile app which helps kids with delayed verbal skills communicate is currently under development. Parents can also seek help from The World Health Organization, which offers an autism intervention curriculum. Stars and Rain recognizes the shortage of trained professionals available, and the clinic also provides training to parents to maximize their children’s’ improvement within the home.
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