By Karen Wolf-Branigin
Director, Autism NOW Center
The October 2013 Autism NOW Center Prism newsletter is about training professionals. When I look back on my 35-year career and all the training that I’ve received to help me be a better informed professional, I cannot begin to count the hundreds of academic courses, conferences, webinars, online courses, and specialized training events that I’ve attended, the plethora of books that I’ve read and myriad of informal conversations I’ve enjoyed with colleagues to enhance my learning.
But when I ask myself, “How many of these learning opportunities were designed and delivered by advocates?” I am sad to report that it’s only a small handful.
The Autism NOW Center believes that people with autism and their families are experts. They have knowledge and perspectives that professionals (without disabilities or without family members with disabilities) do not have. The Autism NOW Center is proud to bring the teachings of people with disabilities and family members to you through our resources, blogs, videos and webinars. We believe that professionals interested in better understanding what it’s like to live with autism must include people on the spectrum and their families as their teachers.
At the same time we want to be clear and note that professionals, researchers and others without Autism also have an important role in training professionals. We encourage people with and without disabilities to work side by side, as equal colleagues. This approach will permit us to include a holistic message and inclusive perspective that can be supported by everyone, including people with ASD.
Training professionals: Autism Now Resources
The Autism NOW Center has several resources written by people on the spectrum that are useful for professionals. We are confident that they will enlighten all readers.
Training Professionals: What are we learning from others?
In Autistic Workers Negotiating the World of Employment , Andee Joyce discusses the challenges that many people with autism face at work and solutions for meeting those challenges in this Autism NOW Center webinar. This is a must-view webinar for job developers and job coaches.
Conor Cleveland authored a blog for the Autism NOW Center called I am Loud. His personal perspective on his communication style and how professionals supported him is a terrific example of what professionals can learn from people with autism. Conor’s teachings are for all professionals working in the field.
A Curriculum for Self-Advocates is written by and for self-advocates. Professionals will be well-served by reading the chapter on The Role of Allies, Advisors and Supporters.
We encourage all professionals to talk with someone on the spectrum and or a family member to learn more about their life experiences. Professionals that take the time to do this throughout their career will help them stay in touch with the real world. Professionals that don’t have someone they can talk with are welcome to contact us toll free at 855.8Autism (1.855.828.8476) or firstname.lastname@example.org
and we’ll do our best to connect you with someone.
The CDC has released training materials
for health professionals that include the perspectives of parents. Materials include an online curriculum for pediatricians developed by faculty and fellows from the Maternal and Child Health Bureau and the Centers for Disease Control and Prevention.
The College of Direct Support Professionals
educates, enriches and inspires people who work directly with people who have disabilities. The College offers over 25 online courses that are grounded in the philosophy that people with disabilities have the right to direct their own lives, choose their own services and live full lives in their communities.
Training Professionals: What does the research tell us?
The Arc’s HealthMeet project hosted a webinar titled, Improving Outcomes and Quality of Life for Adults with Autism.
The program reviews the literature, outcomes for adults with ASD and factors that contribute to a good quality of life.
This edition has two articles directed to professionals. Autism NOW Center Co-director Amy Goodman describes how it feels when she is able to make her own decisions – an important message to professionals. And guest author Charlie Fultz, a professional himself, describes the greatest lessons he has learned from his students. The Autism NOW Center celebrates the great strides we can make when advocates, family members and professionals work together to achieve our dreams.
Self-Determination and Quality of Life
By Amy Goodman
Co-Director of Autism Now
Self-Determination starts with having the attitude that I can survive in this world. That I don’t have to conform to just one point of view and that I can manage and do it my way. It may take some time to adjust to the conventional ways of the world, but with the right supports individuals on the autism spectrum can have a life of their own, a career, and be happy as well.
It took a lot of work to get to where I am today but because I was able to self-advocate and take some risks, I now have a career and a life of my own.
It wasn’t until I was diagnosed with Asperger’s syndrome that I really understood who I was and where I fit into society. I was floundering like a fish out of water. I had no clue why I was the way I am until I finally found what I had so desperately been seeking for more than 25 years. The answer to what is wrong with me or why am I different than everybody else? The answer is there is nothing wrong with me, I just perceive the world in a different way and have some odd ways of dealing with the overwhelming sensations that I find hard to tolerate at times. Once I realized what it was that was giving me so much anxiety and self-worthlessness, I was able to embrace it. The depression and feeling of being in a cloud with no air went away. I was able to see myself in a whole new light.
The first thing I was able to do was educate myself about autism and autism spectrum disorders. During that period, I learned a lot about myself and it all started to make sense. As the saying goes “the light bulb came on” and I could see clearly what it was I needed to do in order to get my life on track. I applied to graduate school at Marshall University in Huntington, WV. I chose Special Education and Autism so I could help others to understand what it is like to live with autism on a daily basis. I also applied to a program for students with autism spectrum disorders at the Autism Training Center at Marshall University as well. After I was accepted into both programs I was on my way to being independent and having a career. The major support used at the Autism Training Center was a person centered planning tool called PATH (Planning Alternative Tomorrows with Hope). A PATH outlines a person’s dreams and goals, and includes a timeline action plan of what to do in order to make your dream come true. I was able to graduate and enter the workforce in my chosen field.
Read the full article.
By Charlie Fultz
This past year marked my first year as a Math 8 teacher. After spending the better part of 20 years in the golf industry (mostly as a golf course superintendent) I had my “mid-life crisis” and decided I was ready to switch careers. Thinking I was only going to substitute for the year and figure it out as I went, I backed into a full-time position teaching math to 57 8th
graders. I didn’t have plans to become a full-time teacher, but it happened and I haven’t looked back.
For your information, I do have a degree in Education but I never used it after graduating. Teaching jobs were few and far between in 1992, and luckily I had a background in golf and met someone who was willing to teach me and help me become a golf course greenskeeper. It isn’t that I didn’t want to teach; teaching didn’t have a spot for me.
Fast forward to 2013. After just a few days teaching, I had a meeting with our special education coordinator and she asked if I would be comfortable adding a child with an autism spectrum disorder to my classroom. I said that I didn’t have an issue with it at all, because I had 9 years’ experience with autism at my fingertips.
My youngest son is a child with autism, having been diagnosed at age 4. My wife and I knew early on that something was a bit off, and he missed several key developmental milestones. Most notably was his ability to talk and converse, he struggled interacting with other kids and people, and he was prone to repetitive motions and actions with toys (like spinning the wheels on toy cars for hours). After having him evaluated and settling into the “new” normal, we’ve had nothing but success through our involvement with the county school system and through a local childhood development center that focuses on children with autism and their growth.
I’m introduced to “Tony” and I meet his mother, who is a lovely and caring woman and wants nothing but the best for her son. This is Tony’s first year in school, as he had only gone to school part-time up to this point. He is anxious when we meet, but I’m not surprised as I know my own son’s feelings when meeting new people. He tells me that he likes math and his mom tells me he is pretty good in math. Meeting over and we head into the classroom the next day.
One of the things I see immediately with Tony is that he tends to blurt out without raising his hand. Initially it is something we just had to work through, and with this help of his aide, we get this into a manageable situation. Prior to my school, Tony was really never in a situation where he had to wait to be called on or asked to answer something, so this was something new and we learned to work through it together.
Another issue we faced was getting Tony on task. When the class had been assigned work, it sometimes took Tony 15-20 minutes to get started. That became an issue when it was time to take tests as well. While we do have 100 minute classes, using that much time to focus and then get started was causing Tony to not finish the tests. Because of this we began using time in his resource class with the special education coordinator to get him to start tests there or to finish them the next day. I didn’t want Tony stressing about not finishing, which he was apt to do. We found great successes by using those resource times to get him to not only finish his tests, but to finish them stress-free.
Having Tony in my class has helped me with my own son and his academics. I noticed very early on that Tony had struggles looking at a worksheet with 15-20 questions on it. I found out from his mom that he worked best when he only had 1-2 questions per page. There is something developmentally that causes all of the work to jumble together and makes it difficult for him. So we began making worksheets and tests with 1-2 questions per page or we let him use a small white board to do the problems individually. Both methods were effective. But what I learned from Tony was helpful to my own son, who was also struggling with worksheets, especially in Math. I asked for a meeting with my son’s teacher and talked about having her create worksheets with just a couple of questions on them. To our amazement my son’s work also began to improve. His teacher commented on how much better he was grasping the material and how he seems less anxious about doing the in class work. My son made the elementary school A/B honor roll for the first time, and we now had learned how to help him cope with his workload better.
Read the full article.
Charlie Fultz is a second year 8th grade math teacher at North Fork Middle School in Quicksburg, Virginia. Prior to teaching, he was a golf course superintendent for 13 years and in the golf industry for 20 years. Mr. Fultz is a published writer in many golf trade magazines, most notably Golfdom, the Virginia Turfgrass Journal, and GCSAA’s Golf Course Management. In 2006 Mr. Fultz was awarded the Leo Feser Award, an award given to the most outstanding article written by a golf course superintendent, for his article titled, “How to Keep Those Above and Around You Educated and Informed.”
The September 2013 Autism NOW Center Prism Newsletter article “Three Different Types of Special Needs Trusts” appeared with incorrect information. The corrected article is reprinted here, and we apologize for any inconvenience the first printing may have caused our readers.
Special Needs Trusts – Valuable Tools
By Amy Goodman
Co-Director, Autism Now Center
Special needs trusts have been used for many years to help plan for the future of a person who needs assistance for a variety of reasons, including handling everyday finances and making important financial decisions. Special needs trusts can be set up with the funds of the individual (first party trust) or with the funds of another person, often parents or other family members (third party trust).
For people with severe disabilities who are eligible for the federal benefit programs Supplemental Security Income (SSI) and/or Medicaid, there are limits on how much an individual can have in income or assets and remain eligible. This is because these programs were designed as “means-tested” programs for people with low incomes and assets (or “resources” which is the term used for assets in these programs).
In the 1990s, both Medicaid and SSI law were changed to strengthen and clarify what could and could not be done with special needs trusts holding the funds of SSI and Medicaid beneficiaries. It is very important that SSI and Medicaid beneficiaries who want to use special needs trusts carefully follow the law. Important rules also apply for spending the funds from first or third party special needs trusts on behalf of an SSI or Medicaid beneficiary.
James McCarten of the Special Needs Alliance provides a great overview in his guest article, which is in the September 2013 edition of Prism
Trusts can be very valuable to your loved one and used to their benefit; however, they must be written and managed correctly. We strongly recommend contacting a special needs lawyer in your area if you are interested in creating a special needs trust.