Category Archives: Autism Spectrum Disorder

Unique Faces of Autism

unique

Credit: Lisa Feng

People often say, “If you know one person with autism, you know one person with autism.” But what does this mean? Take two boys Geoffrey Ondrich and Waylon Cude, 16 years old and unrelated, who both have the same diagnosis of autism.

Waylon is a very serious person and also very into computers. He spends the majority of his time playing games online and spent his last summer interning at IBM programming websites. He is a perfectionist when it comes to working on computers. Though he speaks politely and answers questions, especially factual ones, he doesn’t engage in too much other conversation.

On the other hand, we have Geoffrey, who loves his iPad where he watches pieces of his favorite movie or finds music to listen to and starts dancing. His other past times include rocking back and forth and slapping his left wrist onto his right hand. His clinician finds it hard to engage him as he picks up a plate and bites it, then rolls a toy car back and forth on the table.

Two boys, both have the same age and diagnosis, yet are living two very different lives. Geneticist David Ledbetter, chief scientific officer at Geisinger Health System in Danville, Pennsylvania says, “What we’ve learned in the last five years about the underlying genetics is that there are hundreds of, if not a thousand or more, different genetic subtypes of autism.” In the same sense, it is just as no two people have the same personality. Researchers are using this information to try to get to the root cause of autism at the genetic level that could create new treatments in the future that go to the root instead of just addressing the symptoms.

To read more about different mutations triggering different types of behaviors, click HERE



Parents Can Be the Best Resource

parents

When autism was first recognized as a disorder back in the 1940s, people thought that the parents were to blame for their child’s withdrawn behavior. Psychoanalysts thought that cold and detached parenting was the reason behind an autistic child having trouble communicating socially. However, today we know this is not true and there are biological shortcomings of the body and brain development that are responsible for these social deficits.

An important part of helping children on the spectrum with these issues of social interaction is being responsive to the child’s behaviors. This includes making comments or doing things that build on your child’s current interest and actions to support what they are already trying to do. For example, if your child is playing with a ball, you might point to the ball and say, ‘it’s a ball,’ opposed to taking the ball away and asking your child to say ball before giving it back.

Dr. Michael Siller, co-director of the Hunter College Autism Center and Dr. Marian Sigman, co-founder and co-director of the UCLA Center for Autism Research and Treatment (CART), have done research where they show that parents using this responsive method have children who develop better language and social skills. Another study assigned half a group of parents to a one-year long intervention program where they worked one-on-one with a speech therapist to improve their abilities and skills on understanding their child’s subtle social cues. This program was made to help parents interact in a more responsive way to their child. The other half of parents continued receiving their usual community services and, as expected, the parents who went through the program were more responsive and saw more positive results in their children’s social skills as well.

There is a lack of research done on parent-child interaction, since some people are afraid that parents will feel that they are being blamed. However, working on parenting skills and assigning blame are two very different things. This is an important area of research to continue to explore as it can have very promising results for children on the spectrum.



Preparation is Key for Law Enforcement

autism roster

In Salt Lake City, Utah, the rate of autism diagnosis is 1 in every 54 children while nationally that number is 1 in 68. Also about 49 percent of children on the spectrum in the state are prone to wandering off, so law enforcement has a a lot of interaction with them. In recent incidents where law enforcement did not know an adolescent was autistic, there was miscommunication  that made the situation more challenging than it needed to be.

“If we can have preparation before we get there, we can much better serve what is a very unique and important segment of our community. if i knew what I was responding and it said the individual that we’re dealing with has a special need, I’d treat it differently,” says Sheriff of Salt Lake County, Jim Winder. Usually police officers are trained to use force and harsh commands to get a situation under control, however in dealing with an autistic person it would be more helpful to remain calm and to give the person more space than they would usually. When this policy was implemented by correctional officers, their use of force was actually decreased by 70 percent. “You have to have de-escalation skills. You just have to learn how to deal with those people on a different level,” a member of the Crisis Intervention Team explains.

Now parents and caregivers can register their autistic child so that their information and needs are documented in a database that police can access when responding to situations with people on the spectrum. It helps both the police force and everyone in the autism community to appropriately address the safety concerns for people on the spectrum. Law enforcement states that the new roster has helped reduce a lot of high stress situations by giving the officers information they can use if a person is having a meltdown or behaving in a way officers are not used to dealing with. Preparation is an important step to take for safety in autistic communities in every state and an important step in providing autism awareness for everyone.



Future Funding A Serious Issue for Autistics

Road to Adulthood

We always talk about how to best get people on the autism spectrum the resources they need to thrive. Typically, that conversation centers around early intervention, therapies inside and outside of school, routines and advice for parents in the home, and advocating for a safe and healthy environment for these kids. But what happens when they become an adult? We put all this effort into having them reach their highest potential, but not everyone on the spectrum at 21 is developmentally at that age. So does all that effort go down the drain?

Christopher Merchant, now 19 years old, was diagnosed with autism and is developmentally on par with an elementary school student. He can read and do simple math problems and dedicates three hours daily at a car dealership where he has an aide to keep him on track. His mother, Lisa Merchant, has seen her son reach these milestones that she didn’t think were possible after his diagnosis, “it’s like learning a sport or playing an instrument: The more therapy he gets, the better he gets at it,” she explains.

When Christopher turns 21, he will no longer be eligible for therapies that address his speech and feeding challenges. His mom, expresses her concern, “Our biggest fear is he won’t end up with funding and he’ll end up sitting on the couch. My school district does a really food job–I’m just afraid all their good work will be for naught.”

In Pennsylvania, where the Merchants live, the number of people with autism has more than doubled, with adults being the majority of the growing population. In 2013 there were 8,395 adults on the spectrum in the state, and that number is projected to be over 30,000 by the year 2020. These numbers are reflected across the country with autism diagnoses being made for 1 in every 68 children. A report from their Bureau of Autism Services (BAS), created in 2007, found that even though they have started creating programs for adults on the spectrum, “as people transition to adulthood, the needs for supports and services often increase, although services become more difficult to access.”

This transitioning process and lack of funding/resources for people in the autism community is a serious issue; it is an issue for the parents who sometimes lose their job since their adult child still needs them, it’s an issue for the person on the spectrum, who after making so much progress up to this point now faces a brick wall, and it is an issue for the state, who has to find a way to incorporate people on the spectrum as productive members of society worth investing in. However, states like Pennsylvania are really taking these issues by the reigns. Other states should also being to recognize the need to address these challenges sooner rather than later.

 

Read the original article HERE

Read about ICare4Autism’s Workforce Initiatives HERE



New Therapies for Autistic Children in the Near Future

tummy

Scientists are gathering more and more evidence that autism symptoms can be caused by the bacteria found in the gut or intestines. Research is showing that there is a difference in the trillions of bacteria in a healthy child when compared to the bacteria in an autistic child. The bacteria can differ in quantity or type and these differences can make your child’s stomach more or less susceptible to stomach problems. Scientists are finding that these gut differences may actually have a significant effect on the brain and contribute to the disorder itself.

John Cryan, a professor of anatomy and neuroscience at University Cork College, led a study that showed mice who were fed probiotics were less anxious and produces less stress hormones. He explains, “You have this kilo of microbes in your gut that’s as important as the kilo of nerve cells in your brain. We need to do much more studies on autistic biota.”

When Caltech researcher Elaine Hsiao conducted a study on autistic mice, where they were injected with probiotics, showed results after five weeks of no longer having a “leaky-gut.” The bacteria in their stomach started looking more like a healthy mouse’s, they were less anxious and more vocal, and they also stopped obsessively burying marbles in their cages. Hsiao says, “It’s really impactful, this notion that by changing the bacteria, you could ameliorate what’s often considered an intractable disorder. It’s a really crazy notion and a big advance.”

So what does this all mean for future treatment options? Usually autism is treated with behavioral therapies, but this new research implies that autism may one day be treated in the form of a probiotic, which are “good bacteria” that our bodies need–very similar to the ones found in yogurt. Studies have shown that generally 90 percent of autistic children also suffers from stomach and gut issues, including leaky-gut syndrome, which is when bacteria from the gut trickles into the bloodstream. The CDC reports that there are 3.5 times more likely to experience chronic diarrhea and constipation when compared to their typically developing peers.



Airport Program Enables Children with ASD to Prepare for Travel

Airplane
For many parents of children with autism, going on a family vacation may seem impossible. The biggest obstacle is traveling, particularly flying in planes, as children on the spectrum may be overwhelmed by the new experience they are having. An airport in Alaska has begun a new project to help children on the spectrum ease their anxieties and be able to experience the joys of traveling somewhere new with their families.

The Arc of Anchorage, a nonprofit serving families of children on the autism spectrum, recently sponsored several Wings for Autism days, where airport workers focus on making children with autism comfortable with the travel process. These airport “rehearsals” have been held across the country by other chapters of the organization, creating an experience that aims to open the doors to travel. The organization gets children comfortable by introducing them to several of the experiences of flying, without an actual plane ticket involved.

Jacquelyn McGary, spokeswoman for The Arc of Anchorage, states, “[The rehearsals] also give a rehearsal try for employees in the industry, because those that are on the flight get to work with the individuals and get a sense of what their issues are”. According to the parents that participated in the event, the most common troubles involved in traveling are waiting in lines, being around crowds, being in a new, unfamiliar place, along with being stuck in a confined space for a significant duration of time.

The Arc used visuals to depict each stage of the screening and boarding process to help children understand the steps being taken, and what to expect next. At last week’s event, participants checked in at a ticket counter, headed through a security checkpoint, and boarded a Boeing 737. The airline captain ran the jet along the runway and accelerated the plane just enough to create the volume of a takeoff.

Upon leaving the plane, participants were greeted with a celebratory reception, as well as snacks. Wings for Autism aims to expand their program through creating more chapters around the country. Programs such as these enable families to introduce their children to new experiences, giving them better opportunities to enjoy things together, such as a family vacation.



Kids Helping Kids

Tate Smith (middle) with two of his peers. (http://www.people.com/article/lunch-buddies-help-teen-with-autism)

Tate Smith (middle) with two of his peers. (http://www.people.com/article/lunch-buddies-help-teen-with-autism)

Lisa Smith is a stay-at-home mom with two children who have special needs. After doing her own research and attending conferences on autism, Lisa decided to write her own booklet that explained autism to kids who were in kindergarten and first grade. After getting approval from teachers, she was able to share it with her child, Tate’s, classroom. Mrs. Smith explains the importance of teaching kids about disabilities, “if they don’t know what the disability is, or that there is a disability, they just think the kid’s weird. There’s no understanding, and no real compassion. I don’t think there’s anybody that Tate goes to school with that doesn’t know he has autism and what autism is.”

At the age of 7, Tate’s mom pushed his speech therapist and school to initiate a lunch buddy program, where he would be able to sit with a few assigned peers who were also willing to have lunch with him, and thus be able to work on his social skills with people his age. Tate’s teacher sent notes home to each child’s parent asking for permission for them to have lunchtime with Tate, and they all responded with a yes. “When I thank parents for loaning their children to me for all of their lunch period, they often tell me that their children have learned more from Tate than Tate has learned from them. Compassion. Understanding. Perseverance. When they ask Tate a question, he doesn’t always respond right away. He has to process the language. Sometimes they have to repeat the question. And they stick with him. They don’t lose interest and give up on him,” says Mrs. Smith.

Tate’s speech and language pathologist, Jessica Barker, reflects, “It’s evolved quite a bit with Tate and his age and how far he’s progressed. He’s always had to be taught those explicit rules of social communication: to make eye contact, what tone of voice to use, that facial expressions and body language are important. Also reciprocity: he’s had to be taught that when someone asks you a question, you need to answer. Tate and I worked a lot on how not to kill a conversation. ‘Lunch bunch’ was a great way for him to take what we learned one-on-one and apply it.”

Even his peers see the progress he’s made. One boy, Jayson Brown, has been one of Tate’s lunch companions for the past three years. “He has his own personality. He’s respectful toward others. He’s changed quite a bit, just in his maturity. His manners are much better now, he’s more comfortable in his talking, and I think we’ve helped him with that.” Tate not only feels more connected to his peers, but also feels like he has real friends that he can talk to, which is a nice break from constantly being with a teacher, therapist, or parent. Stories like these make us realize the importance of awareness and the importance of teaching our own children to be sensitive to the needs of those with disabilities.

 



New Perspectives for Children on the Spectrum

Paul Braun with son Mitchell working with a drone.

Paul Braun with son Mitchell working with a drone.

One group of parents is using technology to help engage children who are on the autism spectrum in something that they are interested in, with children who also share their interests. “Taking Autism to the Sky” or TATTS, was developed mainly to help with socializing skills and learning about the physical world around them. Paul Braun’s son Mitchell inspired him to start this project. As a geographer, Braun noticed how useful drones were in helping them survey and map the land, so he was curious as to how seeing the earth from an aerial view would help an autistic child view and understand their world.

Getting a group of kids together that liked technology and were fascinated by the flying drones was an easy enough task. The kids were able to get together and work on every aspect of the drone, including building and customizing their own. They are then able to be the pilot and navigator and even edit and analyze the video that they capture. Braun’s son says, “Sometimes, I imagine actually being in the drone when I fly it. We use some goggles and in there is like a little TV…you could actually see what the drone is seeing right now.”

Dr. Peter Williamson, a neuropsychologist at Dean Clinic, talks about the benefits when autistic children especially, are able to connect to their peers through a shared interest, “when you have kids and they’ve got a common interest and they’ve got something that can kind of bring them together, galvanize them as a group, all of a sudden these kids start talking to one another, they start relating to one another. So technology is a perfectly good hook.” Not only was this helpful to their social skills but they were also able to gain a deeper understanding into how the world looks on a realistic scale, including improving their depth perception.

When the kids were asked to draw their surroundings before seeing the video from using a drone, this is what they came up with:

before dronebefore drone 2After experimenting with the drones and seeing the world from an aerial perspective, this is what their drawings looked like:

after drone

after drone 2As you can see from their drawings, their understanding of reality was definitely enhances from being able to see a new perspective they wouldn’t otherwise be exposed to. Paul Braun hopes to expand this program into a non-profit one day so that other children on the spectrum can have the opportunity to engage in new perspectives too.

 

 

 



colin abbot

Colin Abbott and his piece “My neighborhood … My community”

Colin Abbott is a seven year old second grader at Hopewell Elementary who is making a big impression with his artistic abilities. So much so, that the Department of Education in Washington D.C now has one of his pieces, created last spring, on display in an exhibition hall. His piece is a multi-colored, textured representation of his home that he named, ‘My Neighborhood…My Community.’ His art teacher and Colin took about two months to complete the piece, which was then submitted to the Kennedy Center’s VSA (Very Special Arts) International Art Program for Children with Disabilities. Oh, did we mention that he’s autistic and blind?

Two years ago, Colin was unable to tolerate the touch and feel of paint or glue. Now, he has learned to work with these and other textures that he would have previously been uncomfortable with. Colin’s art class, which meets once or twice a week, is where he lets his artistic expression flow–with the help of the theme song from Super Mario Bros, to name one of his favorites. “I go fast when the music goes fast and slow when the music goes slow,” Colin explains.

His art teacher, Kala Koehler has had to experiment with different teaching techniques in order to help him. “When we started painting, I wanted him to know that when he was adding a medium onto the canvas that he could relate those mediums to his emotions. If he wants to paint an exciting color, we use red. He knows how that feels,” says Koehler, who was inspired by Dr. Seuss’s “My Many Colored Days,” which connects colors to specific moods. “In art, he will feel everything, and he’ll smell it, and if he doesn’t like it, he’s not having it. He can’t make eye contact with you to non-verbally say ‘we’re going to talk now,’ so he has to make sure that you’re paying attention.

Kids like Colin Abbott and Christopjer Duffley who are blind and autistic, yet have so much positive energy and artistic ability are really an inspiration for all of us. Not only do they teach us to appreciate the everyday privilege of sight, but also open our eyes to the abilities of those who are typically seen as “lesser than” or “lacking.” Far from needing pity, these two boys are busy leading happy and productive lives with the support of their loved ones.

To see Christopher Duffley’s story, click HERE
To read more about Colin Abbott’s story, click HERE



Autism and Race, are they connected?

autism and race

Since the rate of autism diagnosis has more than doubled between the year 2000 and now, many studies have pointed to the importance of early diagnosis and treatment. The idea is that, the earlier the symptoms can be detected, the better equipped family and professionals will be to provide the right treatments and therapies. Not only this, but also by helping their child sooner rather than later, they are giving their child the best chance at reaching their full potential. However, for many families, it can be challenging to receive all of the appropriate resources they need to help their child.

According to the Center for Disease Control, African American and Hispanic children do not get an autism diagnosis as promptly as their Caucasian peers. While many children tend to get diagnosed on the spectrum at the age of 4, research shows that African American children are diagnosed one year to two years later. Those two years may not seem like a huge issue, however those are years of critical brain development, where children learn many of their language skills and social skills. Research also shows that when minority children do get a referral, they are often misdiagnosed as having ADHD or other behavioral conduct problems.

This lends the question of whether autism may look different or manifest itself differently in African American or Hispanic children. So far, research has shown that regressive autism is twice as common in African American children as it is in Caucasian children. Regressive autism is when children lose social and language skills after they have developed them. Other studies hint that African American children are likely to exhibit challenging and aggressive behaviors, or that they have more severe problems with language and communication. The causes for these differences are not known, but it could still be traces back to the lack of resources and diagnosis of this specific population.

Recently Dr. Daniel Geschwind, autism scientist and researcher at UCLA, has joined with the Special Needs Network (SNN) to work on a large research project that will help identify genetic causes of autism in African American children. You can read about this project and how to get your child involved with his study here. In a topic full of uncertainty, one thing is certain, and that is the lack of scientific research to help us understand any differences in autism due to ethnicity or race. As more research is underway for underrepresented populations, we hope to be able to provide the right resources and service these children will need to thrive.

At Shema Kolainu, we serve children of all religions and backgrounds in the New York metro area and have a strong belief in giving every child their best chance.