With the sad passing of Steve Jobs yesterday, Autism Speaks wanted to take a moment to recognize the enormous contributions he and Apple made to the autism community. Jobs brought touch screen computing to the masses, and as a result of the iPad and the many other tablet and touch screen devices that followed, he helped many affected by autism achieve a degree of independence that would simply have been impossible without that technology. He was a one of a kind entrepreneur, inventor and innovator, and we felt it was appropriate that we take a moment to recognize his extraordinary life, and to thank him for the contributions to the autism community. RIP Steve, and thanks.
If you would like to share your thoughts, memories, and condolences, you can email firstname.lastname@example.org
Here are two blog posts from the autism community that celebrate Steve Jobs:
James Vaughan’s 11-year old son, Kian, is entering the 6th grade in the Weber County public schools in Utah. Kian, who has high functioning autism, has been mainstreamed in public school since the second grade and has made great strides. James attributes the progress to the successful partnership he and his wife have cultivated with the folks at Kian’s school. James is one of many parents sharing his story, tips and team on MyAutismTeam. We recently spoke with him to learn how he has partnered with his public school to create a positive and safe learning environment for Kian. Here are 10 tips we gleaned from speaking with James. Hopefully some of them will help you. You can post questions and comments directly to James’ wall by clicking here .
(10) Get the Official Diagnosis As Early As Possible
Dr. Megan Farley of the University of Utah diagnosed Kian. We didn’t get the official diagnosis until December of last year when he was 10 because we had been worried about saddling him with the label of autism. In retrospect I would say the right time to get a diagnosis is “as early as possible”. Having the official diagnosis in hand, along with some written recommendations from the doctor enabled us to secure even more services for Kian including technology assistance [see #9]. When we decided we wanted a diagnosis we had to be very persistent with our pediatrician to get a referral. He kept assuring us that Kian would outgrow some of his developmental challenges, but in the end agreed to give us the referral when we were persistent.
(9) Be Firm, But Flexible
My wife and I always make sure that every concern we have about Kian is thoroughly understood by our partners at the school, particularly during the IEP process. Talking about his speech delays got us speech therapy. Talking about his challenges interacting with other kids led to social skills therapy, and so on. It’s important to make sure they understand and address each issue. I’m the kind of person that doesn’t take “No” for an answer, but you have to be flexible. There have been times we’ve requested something for Kian that the school hasn’t been able to accommodate. But rather than saying “No” they’ve always said, “I don’t know if we can do that, but here are other options we can do.”
(8) Communicate Frequently All Year, Even After the IEP
The open communications continues after the IEP, otherwise it’s not a real partnership. We regularly check in with Kian’s teachers and aide to make sure we are helping each other. We also keep the focus of the communication on Kian’s development. We let them know things we are trying at home that are working, and notify them of any changes that could impact Kian’s performance in school that day. We’ll say, ” You may see some distraction today – here’s why… .” That helps them understand how to interact with him. Similarly, we want them to tell us about the challenges they are having with Kian at school so we can then work on those issues at home. The more we are open with each other on a regular basis, the better the job we do meeting Kian’s needs. It keeps everyone focused on the goal of his development.
(7) Speech Therapy, Social Skills and 1-on-1 Aides
Before the second grade, Kian was in the school’s alternative kindergarten and first grade program. There, he had a strong speech program and one-on-one time. He flourished. Now, in the mainstream curriculum, he has an aide and is pulled out of class for 30 minutes each day for either speech therapy or social skills integration. That one-on-one time has been critical, and the special attention from the aide makes it easier to accommodate Kian in the classroom.
(6) Ask If Your Child Can be Tested Differently
When the teacher stood up in front of the class and read off questions for the students to answer in writing, Kian couldn’t really respond to this normal classroom testing, but it was not due to a lack of understanding of the material. When we asked, “Can Kian be tested differently?” the school was happy to do so. He now gets tested on computer where he can type his answers — something he can do quite well.
(5) Seek Out Alternatives for Stressful Situations
Going out to recess was more traumatic than fun for Kian. If that is the case for your child, ask if there alternatives. We asked and Kian was able to stay in the classroom during recess so he could read or do some other type of project.
(4) Get Involved If You See Bullying & Teasing
It’s not surprising that a child struggling with social interaction will get teased and sometimes bullied, but it’s certainly not acceptable. If you see it, GET INVOLVED IMMEDIATELY. My wife is a spunky lady. When she sees bullying going on she makes sure that the students and parents involved know about it and are educated about it. But she does it in an understanding way. She explains how kids are different from each other. We’ve increased awareness about bullying at the PTA. PTA is a great thing. You’re mingling with other parents and making them aware of the issues. When other parents become aware of the issue, they then talk to other parents, who in turn, talk to their kids. We’ve received phone calls out of the blue from other parents saying, “I learned about the teasing my child was involved with. You won’t have a problem with that again.”
(3) Start With The Goal of Building a Real Partnership
One of our goals from the outset was to form a strong, open partnership with the people at the school, from the Principal to the teachers and aides, to the Special Education Director. Kian’s challenges were a lot bigger than we could handle on our own. We let them know how much we’d appreciate their help looking out for Kian and making sure his needs were met. We committed to be totally transparent and open with them and to help reinforce the right behaviors at home.
We certainly didn’t want our son to be a distraction to the teachers and other students, but we also wanted to make sure he had everything he needed to develop and grow. The principal of our school recently told me why they’ve always been so open to finding solutions for Kian saying, “You cared, you really showed it was about forming a partnership with us, and you were always up front about the issues before they became a situation.”
(2) Reduce Homework and Leverage Technology
After spending a day with Kian, Dr. Farley immediately suggested a reduced homework load for Kian and suggested we use a computer or other technology to help him type his homework. 20 minutes of normal homework was taking him 1-2 hours to do (partly due to challenges with handwriting). Our school district had a special foundation that was able to provide Kian with an iPAD. He uses the ipad to keep a calendar of his assignments and to type out his work rather than writing everything out by hand. He also receives a reduced amount of homework. Again, this is setting him up to be more successful each day rather than falling behind.
(1) Reach Out to Other Parents
In the autism community, the biggest contributor to hopelessness is not knowing who to talk to and where to go for advice. I like what MyAutismTeam is doing because they make it easy to connect with other parents near me and see which providers they recommend and what kinds of activities they are doing. It’s a great tool to get those relationships started and then be able to expand on them. My wife and I started a program in Utah called FAAST (Families of Autism and Asperger’s Standing Together) that meets monthly. I posted an upcoming meeting on my wall on MyAutismTeam the other week and ended up meeting another parent that way.
- Interview Conducted by Eric Peacock, GM of MyAutismTeam
Young and old, technology is never far from us. It enables our communication and helps us grow and maintain social relationships. For years Autism Speaks has promoted the research of technologies to support children and adults with ASD, whether that is through the awarding of grants or by supporting research-networking events.
2011 saw a new approach for Autism Speaks’ Innovative Technology for Autism (ITA) initiative with the running of a student design competition called Autism Connects. The design brief was pretty straight forward: to create technology design ideas for individuals with autism to better connect with the world around them, and to allow individuals who do not have autism to better understand and connect with those who do.
Autism Connects was a partnership between Autism Speaks, Core 77 and jovoto. In total there were 126 design ideas submitted from over 30 countries. The popularity of the competition really shows the passion and interest there is for autism around the world and how we can engage young professionals to use their burgeoning skills to make a difference in the lives of people with ASD and their families.
The submitted ideas were judged by a panel of international experts on ASD, including Temple Grandin and John Robison. The jury rated the best design and first prize to Gobug, by Greg Katz and Tom Rim from the University of Illinois College of Fine and Applied Arts Industrial Design.
“Gobug is designed to move around on a ground surface at the control of the users. Up to two or three children can play with the toy simultaneously. Each user takes ownership of one controller. These controllers work in conjunction; each user points his/her remote in a direction, and the Gobug moves in the combined direction of the active controllers” said Greg Katz and Tom Rim.
When asked how the team came upon this original idea, Greg Katz said, “We took this on from a user-centered design perspective. The focus was 100% on the person we were designing for. We designed through an iterative process, constantly sketching ideas and fine tuning them in to workable concepts. The outcome was Gobug.”
In second place was WEsync, which was designed by Noel Cunningham from Maryland Institute College of Art (MICA) in Baltimore, Md.
“weSYNC is an application for the iPad, iPhone, and Web, that creates a specialized profile for the autistic individual by gathering knowledge from each caregiver and establishing a centralized location where it can be accessed and edited by everyone. Establishing a dialogue among doctors, therapists, teachers and parents allows them to share information and reinforce oneanother’s efforts.”
In third place was another idea from Maryland Institute College of Art (MICA) in Baltimore designed by Cameron Zotter whose idea is called Visual Watch. The watch is both a time management and picture exchange communication system (PECS) tool designed specifically for people with ASD.
The three prize winners were invited to this week’s International Meeting for Autism Research to present their designs in person at the technology demonstration on Friday. Autism Speaks’ Chief Science Officer Geraldine Dawson, Ph.D., will be announcing the winners and celebrating their innovations on Friday at the event.
The breadth and wealth of these students’ ideas reflects the technology and autism field in general. All of the designs that were submitted had considered and detailed ways of using technology to aid the lives of people with ASD or those who love and support them. The potential of these ideas to make a difference for families is vast. Our next challenge is how we get these concepts and ideas out into the real world and we’d be interested to hear your ideas on how to achieve that.
Through this competition Autism Speaks has encouraged a new community of young people to think about ASD. Our hope is that Greg, Tim, Noel, and Cameron will take this experience into their working lives and have autism close to their thoughts when they are planning their future projects.
Lastly, none of this could have been possible without our fantastic ITA committee members, who are chaired by Drs. Katherina Boser and Matthew Goodwin. Also, enormous thanks to our judges and the community experts who guided the students’ design ideas to help make them as good as they turned out to be.
You can find out more about the three Jury Prize winners and the six Community Prize winners here.
CBS‘s “The Talk” will profile inspiring stories of teens living with autism, including 16-year-old Carly Fleischmann. Although Carly can’t speak, this incredible young woman has a lot to say. She tirelessly advocates for others with autism by communicating her feelings and emotions on an iPad with revolutionary apps such asproloquo2go, using her inspirational Web site and blogs to “speak” to the world.
Check your local listings for the time near you!
Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!
Have you, or someone you know on the spectrum, used assistive technology to help communicate? Are there any applications you favor? What are some pros and cons of using assistive technology for those on the spectrum?
In this coming week’s ‘Community Connections,’ Family Services will devote a newsletter to technology and autism. Signup and receive here!
My child is nonverbal – what are some intervention methods that might help my child communicate better?
“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community. We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and will address the other themes we received in this weekly post.
Many individuals with autism do not use spoken language to communicate. It is estimated that approximately 25% of individuals with ASD are nonverbal. Despite early traditional approaches such as speech, occupational and behavioral therapy, some children still remain unable to communicate their wants and needs. A recent study found that some children with ASD do not develop spoken language until after the age 5 years. On-going speech and language intervention can promote the development of speech in nonverbal children who are of school age. In addition, there exist specific intervention approaches that can be helpful for some individuals, such as PROMPT, an intervention approach especially designed for children with motor-speech disorders.
Speech and language specialists recommend a variety of alternative and augmentative communication (AAC) devices for individuals who are nonverbal. A commonly used system is the PECS picture exchange system (PECS). PECS has been used with individuals with ASD of all ages. One advantage is that it doesn’t require expensive materials, relying on a set of picture symbols that can be used to make simple or complex requests and other statements. The symbols are typically placed in a communication book. After the child or adult learned to make spontaneous requests. The individual can then learn to construct sentences. . Other AAC methods include the following:
- Gestures and sign language
- Pencil and paper
- Communication books or boards
- Keyboards and other electronic devices
The iPhone and iPad are being used as ACC devices. These new interactive technologies have invited a wave of new applications to benefit individuals on the spectrum, especially those who are nonverbal. Many of these applications incorporate the advantages of the PECS system of offering a stock of visual images as well as the ability to personalize using one’s own images. Two of the most popular programs are Proloquo2go and iPrompts.
Although the use of these devices have not been tested in rigorous clinical trials, those trials are underway and early anecdotal reports are positive. Connie Kasari, PhD. (UCLA) leads an Autism Speaks’ funded clinical trial comparing two different interventions for young nonverbal individuals. Having previously used traditional keyboarding devices, Dr. Kasari has found that the iPad with speech generating software offers a great alternative to expensive AAC speech generating devices. However Dr. Kasari also adds, that these devices “Work best in therapy sessions with a child who has not yet figured out that they can surf the web with it, too!”
Of course, this potential distraction is also an advantage. These new applications are hosted on the multifunctional iPhone and iPad platforms. HandHoldAdaptive, the creators of iPrompts, have launched AutismTrack, a new portable journaling tool that enables caregivers to track therapies, medication and behavior. Developers continue to create new apps to address the challenges of those on the spectrum, making these new tools even more powerful for managing the everyday needs and desires for individuals on the spectrum.
ACC Institute: http://www.aacinstitute.org/
To locate a speech-language pathologist, visit http://www.asha.org/findpro/default.htm