Safety First

Children with autism have a tendency to wander off or leave an area of safety, such as the school or the home, if they are feeling overwhelmed, or even just engrossed in their own worlds. Recently, we’ve seen a number of tragic stories in the news about children on the spectrum, wandering out of school, getting lost, or hurt, or worse. Leigh Merryday, autism parent advocate, teacher, and school media specialist, expresses her concerns over school’s lack of an effetive protocol plan to prevent these incidences from happening. Schools that are specialized for children with special needs are already prepared for wandering students because they are trained and knowledgeable about how autism affects a child’s behavior. However, mainstream schools are less equipped and therefore have higher incidences of autistic children wandering, or elopement as it is commonly referred.

Mrs. Merryday outlines a protocol for schools that she called the SPECTRUM Alert. She explains that her outline suggests ways to make school a safer place for special needs children, and this outline will look different for different schools.

(S) Search Grid: the school and community should be mapped out on a grid including areas of the school that could be vulnerable to elopement as well as any surrounding intersections, train stations, parks, and all bodies of water.

(P) Pre-identification: Children who are prone to wandering should have a file that contains: 1) identifying information including a photograph, 2) the child’s level of communication, interests, behaviors, preferences, etc., 3) any health considerations, and 4) a list of possible locations that child may go within the search grid.

(E) Law-Enforcement Liason: one person should be responsible for contacting law enforcement and the child’s parents and anyone else listed to help in the search.

(C) Code: the school should have an alert code for an elopement incident so that teachers would be required to quickly check hallways and out windows in case they see the missing child.

(T) Training: All school personnel should have training in autism that includes information about sensory integration disorder, social difficulties, potential triggers for meltdowns and elopement, bullying and autism, etc. A behavioral analyst and other trained professionals should be involved in the planning and implementation of this training.

(R) Relationships: police officials should be encouraged to develop positive relationships with children on the spectrum so that they will be more comfortable if approached by an officer trying to help them. Having classroom visits so students are familiar with law enforcement and able to recognize that they are there to help is one way to build this relationship.

(U) Understanding: all school staff should understand that there are certain events in gyms, auditoriums, or cafeterias, that can be stressful and unpleasant for an autistic student and plan accordingly to help them avoid those situations.

(M) Media: Radio, television, and social media especially, are powerful tools that can be used to locate missing children. Schools should consider a media strategy if a child goes missing.


Going to the Dentist

Taking your child to the dentist can be an ordeal, especially for the first few times, since they are expected to let a strange person put cold metal tools into their mouths and sit still during the whole visit. For a child on the spectrum, this ordeal can be especially challenging for the family as well as the dentist. For Nicole Brown and her daughter Camryn, going to the dentist for a basic cleaning was a miserable experience. Camryn was confused and disoriented by the bright lights in her face, the strange noises the dentist’s tools made, and everything else unfamiliar in the room. She would sometimes panic and run out of the office altogether.

Ms. Brown was finally able to locate a pediatric dentist that was able to help her daughter adjust to her routine visits. Instead of suggesting that her child be sedated with anesthetics or immobilized, Dr. Luedemann-Lazar set up weekly visits to help ease Camryn to the norms of seeing the dentist. She gave her lots of breaks so that she wouldn’t get overwhelmed as well as gave incentives, with the help of mom, such as listening to a snippet of her favorite song when she sat calmly for a bit.

Now, researchers are studying how to help children on the spectrum overcome any challenges and fears they have when visiting the dentist. New programs are also being implemented to help dentists and their staff learn more about treating children with special needs. Josalyn Sewell, a dental hygienist with an autistic son, says, “There are children who are completely nonverbal, and if they have a toothache, it completely shuts them down.” This is why parents are urged to start dental care before there is an actual emergency, such as a toothache or cavity, because putting a distressed child in an unfamiliar situation never goes smoothly.

Here are some tips to help your child adjust to dental hygiene and dentist visits:

  • Start Early: get your child familiar with the brushing sensation on gums before their first teeth even come in, so that when your child is ready for the toothbrush they are used to the process and sensations that come with brushing your teeth.
  • Go Electric: since many children, including those not on the spectrum, have very little patience when it comes to brushing their teeth, an electric toothbrush can help parents make the most of the time they are able to actually brush their child’s teeth.
  • Start Small: if getting the brush in your child’s mouth is a major obstacle, then start with baby steps; maybe brush one tooth first for a few seconds and then two or three days later, try brushing the same tooth again for a few more seconds. It’s always okay to take it slow.
  • Rewards: some parents call it bribery, others call it incentives, whatever the case, introducing a small reward every time your child is able to keep the brush in their mouth or even allows the brush in their mouth can go a long way–just make sure the reward isn’t candy.
  • Set up the routine:  let your child know what is going to happen. This can be done through visual aides such as creating a picture schedule to supplement the words used to describe what will happen.
  • Careful with toothpaste: use kid-friendly toothpaste kids, especially those still learning how to spit, and even so, only use a very small amount. Sometimes a wall-mounted toothpaste dispenser can be helpful for kids learning to handle toothpaste portions on their toothbrush.
  • Set a timer: brushing until the count of ten, or to the end of a song, or setting a timer to let the child know how long they should brush for and when the brushing is okay to stop makes this activity much more manageable for both parent and child.

To read the original articles, click HERE and HERE


Earlier Autism Detection Raises Questions About Early Intervention

Autism is a genetic disorder that affects about 20% of younger siblings of those on the spectrum. Researchers are now saying that they often show symptoms as early as 18 months, according to a study published in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP). The study used 719 younger siblings of those with autism, otherwise known as ‘high risk’ siblings, who were assessed at 18 months and then 36 months to identify any social, communications, and repetitive behaviors that could be early symptoms. Warning signs such as poor eye contact and/or repetitive behaviors were observed in 57% of siblings and among those without symptoms at 18 months, for the ones who were later diagnosed, started showing signs by 36 months. Researchers note that about half of the children had poor eye contact combined with limited gestures and imaginative play while other children exhibited repetitive behaviors and lacked nonverbal communication skills.

Although it is important to detect these warning signs or early symptoms of autism, John Elder Robison, author of Raising Cubby, Look Me in the Eye, My Life with Asperger’s and Be Different–adventures of a free range Aspergian, and member of the Interagency Autism Coordinating Committee of the US Dept. of Health and Human Services, expresses his concern over early intervention. According to people on the spectrum who had received early intervention treatments as children, their experiences seemed half positive and half negative.

While many people talk about how wonderful it was to have that support throughout their childhood, “others talk about suppressing behaviors that embarrassed parents…[and] imposing their will where it was not wanted.” Robison argues that this is something to take into serious consideration as we move forward with creating new treatments and therapies for early intervention. He critiques our abilities to deter autism in infants now as young as 6 months old, asking what interventions are actually appropriate at this stage and to what end?

When providing intervention for a four-year-old, we are able to see the progress we make in the child’s behaviors and adjust our plans accordingly. However, with an infant, the issues are not very clear, Robison says, “We may pick up a sign of autism, but what kind of autism? Will the child be verbal or silent? Will the child be lovable, eccentric, unable to care for themselves or talk…it’s too early to know.”

As we continue to move forward with autism diagnoses at earlier stages, we also need to move forward in the methods and treatments we use for early intervention.

To read the original study, click HERE

To read John Elder Robison’s article, click HERE

Taking Literacy to the Next Level

Dr. Marion Blank is a developmental psychologist with a specialization in language and learning, director of the A Light on Literacy Program in the Department of Child Psychiatry at Columbia University, and a consultant to government bureaus in England, Canada, Holland, Israel, and Australia. After studying how children learn language for over 40 years, she received the Upton Sinclair Award in Education. For children on the spectrum, about half are non-verbal or are limited to few words. So when we see news stories like the one about the non-verbal autistic teen who gave a graduation speech using technology, we think of them not only as an extraordinary individual but also as an isolated case that goes against the norm.

Dr. Blank uses this point to criticize the assumption we make that children who are non-verbal will not be able to use language. She asks, “what if most, if not all non-verbal children could learn to read and write and are not doing so simply because they have not been taught?” For typically developing children, spoken language comes before written language, so if they cannot speak then they are not ready for reading and writing. For these students on the spectrum, their school instruction focuses on learning to write their name, learning signs relevant to the classroom, and learning a few sight words; but they are not given the same opportunities as those that we hear about on the news.

Is it possible that all non-verbal children are able to learn language to the extent of these “isolated cases”? Dr. Blank argues that is it because its important to recognize that many of the success stories we see on the news actually started with a lot of home instruction. They were able to find the methods that fit their child’s needs in order to teach them in a way that allowed them to learn. “They [parents] also did not use traditional reading instruction and so were able to transcend the assumptions guiding the educational system and use technology to give their children the opportunity to become competent language users,” she says. This is why she designed her own program the mimic this type of home instruction, called Reading Kingdom.

Overall, it is important for parents, professionals, and the general public to understand that non-verbal autistic individuals are definitely capable of more than we usually assume. Dr. Blank says we know we succeeded when we no longer see these success stories on the news because literacy in children on the spectrum will be the norm.

To read the original article, click HERE

Did you do those errands yet?

Many parents with children on the spectrum face challenges in taking their child out into a variety of public settings. For Katrina Davis, a family services advisor, she thinks of all the places her son can’t go every time she walks along a bike trail and cyclists occasionally yell “on your left!” Her sone Arthur is 15 and autistic, and although has come a long way in how he behaves and communicates, does not always pay attention to his surroundings. With the bicyclists having the right of wat and expecting those rules to be followed, she could see how an accident could easily happen. How could she explain to her son, who struggles with language and communication that there were different rules to follow when you were in certain environments?

Davis was tired of having bad experiences with simply trying to do errands such as grocery shopping or going to the bank. She explains, “the tantrums, the odd behavior, the stares, the abandoned shopping cart filled with food, the failed attempts at waiting in a line left me exhausted, hopeless, and feeling isolated.” However, she recognized that these outings are an important life skills for her child and healthy experiences for both of them. Below are some tips she shared based on her own experience, on how to make doing errands a more enjoyable experience for everyone.

Plan: keeping a dry erase board in the car to draw a picture story to help explain unexpected changes in schedule, for example a traffic jam or a closed store. Bringing along activities or toys that your child likes to help them stay calm and stimulated.

Exposure: Return to familiar areas and even if you’re passing by consistently and never get our of the car, you are still setting up a more successful future outing.

Small steps: plan short trips to the grocery or a particular place so that your child gets familiar with the environment and people. Gradually increase the time you can spend in these places as your child gets more comfortable in them.

Persistence: There will be setbacks and things will not always go smoothly, maybe you don’t get anywhere near the end of your grocery list, still celebrate the small victories.

Take a deep breath: if someone has a negative reaction to your child’s behavior, remember that it is a good opportunity to educate others about autism and create a positive connection.

Ask for help: ask a family member of a friend to come along for the trip if it will make you feel better able to handle any challenging situations that may come up.

For other autism resources, check out our resource links HERE

Understanding Sensory Challenges

Occupational therapist Lindsey Biel, co-author of “Raising a Sensory Smart Child” and “The Definitive Handbook for Helping Your Child with Sensory Processing Issues,” has some important points to make about how to best support a child with sensory issues. As the number of children with autism rises, so does the concern in the autism community for providing the necessary knowledge to understand those affected by sensory overload.

Inspired by Temple Grandin’s book, “Thinking in Pictures,” Biel became facinated with people who see the world in a unique perspective. She explains the importance of educating others about sensory challenges, stemming from her own struggles as a child with issues such as discomfort in fluorescent lighting and noise in the cafeteria. Her first two books were geared towards giving parents and professionals best practices that were usually only implemented during a therapy session or within the school. Her new book “Processing Challenges: Effective Clinical Work with Kids & Teens” is more geared towards professionals in the autism field–psychologists, therapists, social workers, etc. Many times sensory problems are not recognized as the problem and the connection between the sensory challenge and the behavior gets lost. Biel pushes the idea that we need to start to really listen to what people with sensory issues have to say. In order to make a difference in these people’s lives, we need to:

  • Collaborate with individuals who experience the world and their bodies differently and work together
  • Empower people with sensory problems to become  more self aware to self-advocate
  • Share ideas, perspectives in magazine articles both in general parenting and other general consumer publications as well as autism specific publications
  • Speak to parenting groups and have professional workshops, including staff development around these issues

She argues, “There is still so much research, education, and awareness that needs to happen. We still ask students and workers to adjust to schools and workplaces rather than adjusting those environments to meet the need of the user. Parents still have pediatricians who trivialize their concerns about oversensitivities to noise, or clothing fabrics, smells, and so on. And they still have friends and relatives who think they’re indulging their child when they give them movement breaks or special allowances to accommodate their sensory needs…Every parent, teacher, and caregiver needs to know first and foremost that when a person is at the mercy of sensory issues, it can be extraordinarily difficult to behave as expected.”

Some basic tips for caregivers dealing with children on the spectrum are:

  • avoid harsh lighting
  • provide soft and seamless clothing
  • use a reassuring and firm touch
  • speak gently and patiently using clear language that is straightforward and free of unnecessary words 
  • do not demand eye contact when you are speaking
  • understand that they are not going to stop self-stimulatory behaviors just because you tell them to
  • assume competence even if the child/person has yet to prove this to you

Shema Kolainu- Hear Our Voices, offers its students a one-of-a-kind multisensory environment called the Snoezelen room. This room is specially designed to deliver stimuli to various senses using lighting effects, color, sounds, music, and scents. It provides a sense of calm to the child who may be experiencing some form of sensory overload and allows for student and teacher to work on communication, enhance their understanding of each other and build trust. Read more about our state-of-the-art room HERE!

For more resources on handling sensory challenges:

To read the original interview with Lindsey Biel, click HERE


5-Year-Old Raises Awareness

Iris Grace and her cat Thula

Iris Grace is a five year old diagnosed with autism who picked up a paintbrush last year and has been making waves ever since.

“It was her first painting I noticed a difference in her painting compared to how you would normally expect a child to paint. She filled the page with color but with thought and consideration…We did’t think much of it at the time, we were just so happy to have found an activity that brought her so much joy,” Iris’s mom, Arabella Carter-Johnson, explains.

Her paintings have gotten attention and praise all across Europe, Asia, and America. In fact, many have been sold to private collectors for thousands of pounds each. Iris and her family use the profit to pat for art supplies as well as all of her therapies. Even Ashton Kutcher has tweeted about her artwork:

“She will watch water, trees, wind, leaves, flowers, birds, clouds…she is so interested in movement and how it changes things…I can see so much of what fascinates her in her art, I believe she can see things in more detail or notice things in more detail,” says Arabella. By following through on Iris’s interests, they are now also able to raise awareness about the kinds of resources and tools that we need to help children with autism. They even started their own activity club that meets every Saturday to provide support to children on the spectrum.

According to the American Art Therapy Association, art therapy is the process where “art media, the creative process, and the resulting artwork is used to explore feelings, reconcile emotional conflicts, foster self-awareness, manage behavior and additions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. A goal in art therapy is to improve or restore functioning and his/her sense of personal well-being.”

Shema Kolainu offers art therapy as part of their program to help children on the spectrum focus their thoughts and express themselves through mediums other than verbal communication, which can be very challenging for students on the spectrum. Read more about the therapies offered by Shema Kolainu, HERE.

To see more of Iris’s artwork, click HERE

ABA Therapy Continues Its Success

PHOTO: The Rogersons are happy their sons Tom (L) and Jack (R) are close but don't think Tom should be responsible for Jack as he grows older. (ABC: Australian Story)

Jack Rogerson was diagnosed with autism as a toddler and written off by many medical professionals as low-functioning and limited to special education schooling. He was a hyperactive child who could not express affection and could barely speak but his parents believed that with the right tools and support, their son would eventually be able to live independently and engage in all the same activities as his peers.

After meeting Dr. Elizabeth Watson, a speech pathologist and therapist, Jack’s parents learned about Applied Behavior Analysis (ABA) that is used for early childhood intervention for kids on the spectrum. ABA therapy is essentially “a teaching technique that breaks down every skill that a child needs to learn into very small discrete steps, each of which is taught individually with painstaking repetition and they joined together to complete the task. It is applied to everything from tying shoelaces to social skills and conversation.”

Living in Australia, they found no centers or schools offering ABA therapy and the resources that Jack needed. Wanting to expose Jack to ABA therapy in the hopes that it would help him, Ian and Nicole dedicated themselves to giving Jack the support he needed and turned their house into their own early intervention center. “You’d walk into the house and there’d be labels on things and a big whiteboard and words written on it…and computer screens,” Ian Rogerson explains. “We decided he needed roughly 25 hours a week in that first year of one-on-one therapy,” Nicole said.  

Ian and Jack were determined to mainstream school their son and were eventually able to place him in a public school in Sydney. Jack had an ABA trained helped with him at all times at first to help him adjust to certain routines and behaviors but by the end of his elentary years his ABA helped was only needed for a few hours a week.

Jack went on to the Special Education Inclusion Program where he learned academics as well as domestic life skills. Director of students, Adam Lewis, says, Jack’s help a leadership role this year as a house monitor…He speaks well and politely to the younger guys, he has very high standards himself in terms of how he presents and his own conduct.”

In 2003 Nicole Rogerson decided to team up with Elizabeth Watson to open and establish their own center that specialized in ABA therapy for children on the spectrum. Nicole says she was impressed with Jack’s progress after the therapy. And is now CEO if the non-profit Autism Awareness Australia. She says, “Intensive ABA programs are still the only thing that come out as showing any evidence whatsoever of efficacy, and they’re still not funding it. Unless the government makes a genuine investment in this area, so many children are not going to reach their best outcome and I think that’s a tragedy.”

Shema Kolainu is committed to providing resources for parents and families in all five boroughs and offers a variety of therapies. All of our programs are individualized and based on the science of Applied Behavioral Analysis. To read more about ABA therapy and all the therapies offered by Shema Kolainu, click HERE


To read the original story, click HERE

Resources for Students Transitioning to the Workplace

In Hawaii a student ages out of their public school system at 20 years old. For 1,800 special-education students, this meant that they could no longer finish high school and earn their diploma. But a recent federal judge ruling will actually change that. These students will now be entitled to free educational services to make up for 2 more years of schooling that they were denied.

However, this additional schooling would not involve sending these students back to high school, but rather provide a 2 year secondary education transitioning program. The Hawaii Disability Rights Center argued that the state allows students without disabilities and older than 20 to complete secondary education programs under the state-run Community Schools for Adults. Also, the Individuals with Disabilities Education Act entitle children with disabilities access to public education until the age of 22. “In Hawaii…non-disabled students between the ages of 20 and 22 can pursue diplomas that eluded them in high school, but students with special needs are simply out of luck,” they argued.

Attorney Paul Alston explains, “We are talking about a population that the DOE has never served and trying to provide them not classroom education, but work education, life education and to help them get skills so that they can function as independent adults.”

Wheels in the US Department of Labor are moving as well, as they are in the midst of choosing individuals to serve on the National Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities, where they will make recommendations to the Secretary of Labor, Thomas Perez.

“Individuals with disabilities can make significant contributions to our workplaces,” says Perez, “This advisory committee will help American Job Centers, Workforce Development Boards and vocational rehabilitation agencies nationwide work collaboratively to promote employment opportunities for this pool of talented workers.”

Apart from this, the new workforce law would make changes to the transition from school to work for students with disabilities and limits who is eligible to work for less that minimum wage.

ICare4Autism is working on a comprehensive Autism Workforce program for all 50 states to provide the modality to obtain work for all autistics. See their site here,

To read the original articles: 

Clearing the Air for Autistic Children

Preparing for a trip and going to the airport can be a stressful endeavor for many people, even those who are used to traveling. So for families with autistic children it is easy to imagine how the experience of being in an airport and boarding an airplane can prove to be a challenge. The simple act of being in an airport can be overwhelming enough for an child on the spectrum who experiences sensory overload especially in crowded and loud places. “Everything from announcements made over a loudspeaker to bright lights and loud noises, choreographed chaos, getting from point A to point B, waiting in line with hundreds of other passengers, going through security, and even a simple request like removing a child’s shoes can trigger a meltdown,” explains Myki Romano, Autism Society of Illinois training coordinator.

That’s why Dr. Wendy Ross, a developmental pediatrician fromPhiladelphia, is making moves to help children and families have a smoother experience when traveling in an airplane. Four year old autistic Nathaniel Horsely recently navigated O’Hare International Airport inChicagowith the help of his mother, grandmother, and teacher during a “dry run” flight training program offered by United Airlines and a program called Autism Inclusion Resources (AIR). Nathaniel did really well, reports his mom, up until where they had to wait on other passengers. She explains that Nathaniel, who also has ADHD, has trouble sitting still, staying on task, and waiting in stressful situations. “The clinical support of this program means we’re much closer to being able to get away for a quick trip and maybe one day experience Disney World as a family. Being able to go through a dry run and see how he experienced being at the airport and on an airplance put us much more at ease.”

Dr. Ross has been working with other clinicians and airlines since 2009 to develop this training program for families and airline staff alike in order to help families like Nathaniel’s get where they need to go. “We tap an unmet need for families, who aren’t necessarily worried about an autism spectrum diagnosis and finding a cure, but most concerned about building life skills and enhancing the daily living opportunities for their child,” says Dr. Ross who’s goal is to create functional flyers. Apart from providing social services and clinical support, Ross’ foundation partners offer on-site training programs not only inChicago, butNew York, Philidelphia,Houston, andLos Angelesas well. Myki Romano remarks that, “Families need to experience where the pitfalls may be for their child in an uncharted territory and have support to help navigate the challenges…United Airlines trial run from takeoff to touchdown is an absolute blessing to these families who can now board an airplane and successfully reach their destination.”

For more information about AIR, click HERE