On Day 3 of the 2014 ICare4Autism International Autism Conference, Dr. Stephen Shore, assistant professor in the Special Education Dept. at Adelphi University and ICare4Autism Advisory Council member, gave a presentation of Autism and the Arts: Movement, Music, and the Sensory System. … Continue reading
How do we teach children on the spectrum to be confident and independent self advocates? When children are young the parents or caregivers have the responsibility of fighting for health insurance coverage so that they have access to all the appropriate therapies that they need, for example. However, as Sharon Fuentes, a blogger in Northern Virginia and a mother to a boy with Asperger’s, point out, “I’m not always going to be here. My main goal in life, for any child, is to raise an independent, responsible adult who is able to function in the world and be able to contribute to society. We all have to advocate for ourselves. The reality is that with special needs kids, if they able to learn these skills just by watching, they would. But they can’t so we have to teach them.”
Parents can help their children be better self-advocates, as they grow older. First the child should be aware of what his/her needs are as well as her specific strengths and weaknesses. Jim Ball, executive chairman for the national board of the Autism Society says that you want to make sure that your child also knows how to filter the information they give out about themselves. “They are so trusting of people and so open and honest about who they are, which is one of the qualities I love most about them …so you have to teach them that there is a time and place to discuss it.”
Here are some tips on teaching your child to express their diagnosis and express their specific needs
– They should understand the difference between needs and preferences. For example, for Fuentes’ son, who is 13 years old, she had to explain to him that sitting close to his teacher in class was a preference, while having a quiet space to retreat and collect his thoughts when he gets overwhelmed is a need.
– Writing a note to their teachers. For older children especially it can be a useful exercise to write a letter to each of their teachers to explain who they are, what they like and dislike, what causes them stress, and what they most need to succeed. This is not only great for their own self-awareness, but also a great resource for the teacher.
– If it’s possible, include the child in their own Individualized Education Plan (IEP) meetings. They can voice concerns over situations that may be problematic for them as well as gain a better understanding on how things work. “Just asserting what they want is important for anyone to be able to have a sense of self-worth, and a sense of confidence that you can share what you want and people are listening to you,” says Fuentes.
– It’s important to talk about who are “safe people” when it comes to sharing information about themselves. They do not need to tell everyone, including all of their peers, where someone may use the information against them in the case of bullies, for example.
– There are many books that can help with advocacy. Jim Ball recommends “Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum,” edited by Stephen Shore.
John Elder Robinson, a high functioning autistic and popular blogger, talks about how autism made modern schooling an insurmountable challenge for him. He explains that like education, autistic people have been around for awhile. However society has not done their best when it comes to accepting and integrating neurodiversity into everyday life. Robinson says, “Unfortunately, when they describe us, they forgot to enumerate our gifts. They called us disabled because they saw what we couldn’t do, and they overlooked what we do better than anyone else. We’re only now unraveling the damage that’s done to a generation of autistic people. We’re recognizing that we’re different—not less—and joining the community of neurodiverse humanity—people whose brains are wired differently.”
Robinson argues that our education system does not offer the kind of variety and accommodation for a neurodiverse group of students. He says that we have a total focus on book learning and have largely eliminated the hands on/experiential component of learning. “Learning a trade or job skill at the side of a master or tutor evolved over thousands of years and it works. Automating the process with a textbook may work for some people too, but for those of us who are different…”
Teaching communication and creating more opportunities for vocational education are an important part of setting a student up for success in life. If we look at the system in place now, we see a very rigid structure that is largely based on test scores. For example, a student interested in cars is advised to tread the educational path towards becoming a mechanical engineer. This means, completing high school, while not learning practical skills, but more so learning how to be successful in college and hone test taking and writing skills; then completing a four year program in college where many of the subjects she will take most likely will not be related to car design, however are required before grad school; then once in grad school, the student can finally really engage in independent work that actually relates to her specific automotive interest. Hopefully by doing all this the student is able to pave a successful life route. But this situation, especially for an autistic individual, is really only happening in a perfect world, because their everyday challenges make life a little more complicated that the school system seems to accommodate for.
Robinson says that if we add more hands on learning at both the high school and college levels, we can encourage teens to focus on their interests and gifts early to teach skills that relate more closely to those interests. He argues, “Keep this as a goal: If a student goes on to college, great. But send them out of high school with solid job skills, no matter what… Let’s build up our community college system, which is the closest thing we have to hands on learning in college today. By moving more students through college on the way to a four year degree, we teach even more real life skills, and increase the odds of a student who can make a living, whether he continues or not.”
According to Robinson, we need to push our schools into discussing how to teach real and usable work skills at every stem on the educational ladder, how to teach people in a comfortable environment, and helping students to organize themselves in a way that nurtures their interests and talents.
High functioning autistic professor, Stephen Shore will be discussing ways to develop employment opportunities through interests and strengths for high schoolers on the spectrum. Peter Gerhardt, founding chair of the scientific council of the Organization of Autism Research, will also be presenting on transitioning from high school to work, underlying issues and quality of life. These two specific presentations will take place on Day 1 of our upcoming International Autism Conference. For more information and registration, please CLICK HERE!
For the original John Robinson post, click here!
Stephen Shore is an assistant professor in the Department of Education at Adelphi University and also a member of the ICare4Autism Advisory council. At just 18 months old he was diagnosed with autism spectrum disorder and tomorrow be will be speaking at Clarkson University’s David Walsh ’67 Arts & Sciences Seminar Series in Potsdam, New York. His presentation will be an autobiographical journey, titled “Life on and Slightly to the Right of the Autism Spectrum: An Inside View to Success,” which will cover the challenges he faced with verbal communication as a young child to becoming a professor.
When he was diagnosed, professionals said he had atypical development and was too sick for outpatient treatment, in fact, he was recommended for institutionalization. However, he had great support from his parents and others and began speaking verbally at the age of 4. Now as a professor, his research focuses mainly on figuring out best practices to address the needs of autistic individuals.
His presentation will focus on teaching of musical instruments, classroom accommodations, and issues faces by young adults, such as relationships, higher education, employment, and self-advocacy. He will start the lecture with an activity to demonstrate to his audience how it feels to have autism and the struggles to communicate and socialize.
Apart from his work with children and spreading his story, Shore does presentations and consultations on an international level. He has written a variety of books including Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self Advocacy and Disclosure, and his critically acclaimed Understanding Autism for Dummies. He is the president emeritus of the Asperger’s Association of New England, and other autism related organizations apart from ICare4Autism.
Stephen Shore will be speaking at our upcoming 2014 International ICare4Autism Conference where he will present on developing employment opportunities for young autistic adults as well as autism as it relates to the Arts and our sensory systems.
For more information on the conference and registration, please click here
For a video on Stephen Shore’s life with autism click here
Aspen, Colorado is home to many popular skiing, hiking and snow-boarding resorts and programs. Now it is also home to Extreme Sports Camp- a sleep-away camp for children and teens with autism. Continue reading
Let’s face it: kids (and adults) can be mean and not afraid to bully others, just to make themselves feel superior. Unfortunately, children with autism, mainly older children, are susceptible to bullying, which can lead to depression, low self-esteem, self-harm, or even suicide. A study conducted at the University of Manchester by Dr. Judith Hebron and Professor Neil Humphrey examined the association between bullying and children with autism.
The study was carried out by surveying 722 teachers and 119 parents of children with autism, and concluded that bullying occurs more often in mainstream school settings, rather than a special education school. This is because at special education schools, the classroom size and ratio of teachers to students is number, providing less opportunity for bullying. Dr. Judith Hebron commented,
“Children with autism are easy targets because their behavior may be regarded as odd or different, and our research tells us this is likely to result in bullying, teasing and provocation. At its most extreme, bullying results in suicide, self-harm, low self-esteem, mental health problems and difficulties at school. But not all of these children are bullied, and as researchers, we are interested in finding out why.” [i]
Bullying is a serious concern among children, both typically developing and with autism. The survey’s results concluded that if the child has a strong network of peers and mentors (teachers and parents), the rate of bullying can decrease. Every school setting should hold a zero tolerance policy, to ensure the safety and well-being of their students.
Shema Kolainu-Hear Our Voices holds frequent workshops on non-verbal communication, socialization, music therapy, and even bullying. On June 6th, Dr. Stephen Shore, an active member of the Shema Kolainu community and its partner organization, ICare4Autism, presented the workshop “Bullying: Practical solutions for eradicating bullying for individuals with autism and other special needs.”
Dr. Shore is a self-advocate for autism, and during the workshop he discussed just how prevalent bullying is in the school and community settings for people with autism. The workshop aimed to define bullying, learn to stop the act, and identify how learning effective skills in self-advocacy can help stop or prevent bullying. Dr. Shore successfully informed parents and professionals alike on the dangers of bullying and the effect it can have on individuals with autism.
[i] “Medical Xpress” Research throws new light on why children with autism are often bullied. 7 Aug 2013. Web. < http://medicalxpress.com/news/2013-08-children-autism-bullied.html>