CLASS Inc. Forum on Youth with ASD
Two of our Board members (Lisa and Eva Rajczyk) attended the Forum on Youth with ASD that was sponsored by CLASS, Inc. of Lawrence, MA. The Forum (that took place on March 20th at one of the function halls at Salvatore’s) featured Bob Harris of CLASS Inc., State Senator Barbara L’Italien, and Scott Badesch and Jim Ball of the Autism Society of America. Mr. Harris acted as the Master of Ceremonies and introduced all the speakers.
Barbara L’Italien was the first speaker. She is well-known in the State for her years of untiring work on behalf of the disabled, in particular those with ASD, while a state representative and her continued dedication to the Autistic community now that she is in the State Senate. Barbara’s son, Rudy, who is now 24, was the catalyst that sparked her interest in ASD children. Now that her son is an adult, she is keenly aware of the challenges faced by adults on the Spectrum.
She indicated that there are many challenges that all of us in society have to conquer in order to help our ASD family members and friends:
- Problems with insurance coverage for a disability that appears to the uninitiated to be invisible;
- There is a need for teacher training (four-year curriculum), since most teachers have limited or no knowledge about how to prepare children on the Spectrum to become successful adults;
- What will be the impact of the ABLE Act in the Commonwealth;
- ARC needs to do a better job when it comes to autism, especially Asperger’s Syndrome;
- In higher education, there is need for flexibility and a way for those on the Spectrum to be able to transition meaningful full-time employment;
- The commission that has been recently formed, (please see Commission to Help ASD People) must focus on the housing and employment needs of people on the Spectrum – The bottom line, she said, is that “economic development equals jobs;” and
- One of the biggest challenges to non-profits attempting to help people on the Spectrum: no more SEED money from the State.
Scott Badesch found out about Autism Society of America through JB Autism Consulting, where he turned to help his son, Evan, now 28 years old. Mr. Badesch is now the President and CEO of Autism Society of America and spends much of his time traveling the country advocating for people with ASD.
Autism Society of America was formed in 1965 in Washington D.C. and now has 104 affiliates throughout the country. Its primary goal is to improve the quality of life for those on the Spectrum by working with parents, individuals, and professionals. They coach people on how to get services and works in collaboration with the ARC program.
According to Mr. Badesch, Autistic individuals face much discrimination, which he considers to be a civil-rights issue. He reaffirmed what many Aspies know far too well – between 70 – 80 percent of ASD adults are unemployed. Additionally, many Autistics don’t get the appropriate services they need. Between six- to seven hundred thousand individuals are on a waiting list for services nationally. Many pin their hopes on the ABLE Act, but there is much concern that Congress might reduce the funds for services. He reiterated what ASD adults insist on – people with disabilities must be part of the conversation. All too often, they are ignored and others make decisions for them.
He, like Senator L’Italien, believe that colleges need to have a discussion about the dichotomy between the number of kids with disabilities who are accepted to college and the number who actually graduate. Students with disabilities, especially on the Autism Spectrum, must be provided with appropriate services to keep them in school and allow them to graduate.
And, like all of us at Asperger Works, he believes that employers should make accommodations for adults on the Spectrum since hiring people with ASD is a benefit for the employer and the employee.
James “Jim” Ball, a Board Certified Behavior Analyst (BCBA-D), has been working in the private sector field of autism for over 25 years. He was also invited by Health and Human Services Secretary Kathleen Sebelius to join the Interagency Autism Coordinating Committee, a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning Autism Spectrum Disorders (ASD). Mr. Ball works with individuals through his consulting firm, JB Autism Consulting.
Dr. Ball was a wealth of information. One thing that is often ignored by all professionals and agency working with the Autistic community, according to Dr. Ball, is the importance of recreation that not only causes pleasure but also impacts social behavior. Another fact that most of us was unaware of is that Easter Seals has been a long-range service provider for people with ASD. More and more often, children are being diagnosed with ASD, including those with other disabilities like Down’s Syndrome. Increasingly parents are given options in the care of their Autistic children.
He also told us about the Autism CARES Act of 2014 that was signed into law by President Obama in August of last year. Autism CARES reauthorized the Combating Autism Act and continued important investments in research, prevalence monitoring, and services for both children and adults on the Spectrum. Unfortunately, there are many gaps in adult services. He also told us about an non-profit in Chapel Hill, North Carolina, Extraordinary Ventures, that provides employment to young men with Autism and other developmental disabilities.
There is also a vocational rehabilitation study that is researching affects of Autism not only on the individuals who are Autistic but also their families and the communities they live in. But, there is still a lot that needs to be done. It is important to have assessment that is based on well-researched data. Job matching with the Autistic individual’s skill sets and talent is a must.
It was interesting to hear both Dr. Ball and Mr. Badesch support the purpose for the formation of Asperger Works. They emphasized that we must look at employment as an industry that needs to provide mentoring for the Aspie adult and engagement of employers. There are three things that should be required of employers:
- invest in making an Aspie’s employment successful;
- the facility that hires adults on the Spectrum should be Autism friendly; and
- find ways to become a resource for Aspies, especially when it comes to getting around some overly strict regulations.
It is also important to engage school systems since they will be supplying the workforce of tomorrow, including young people on the Spectrum. It is interesting that small schools in hideaway places are leading the way in providing services to Autistic students. For instance, Townson University of Townson, Maryland has the Hussman Center for Adults with Autism, which was founded through an endowment from Therese and Douglas Erdman. It has since been also funded by the Federal Government and John and Terri Hussman through the Hussman Foundation. The mission of the center is to “empower young adults who have ASD to keep learning and to live life to their fullest.” According to their Website, the Hussman Center “provides guidance for how to create inclusive communities that are welcoming for adults on the autism spectrum. Thousands of hours of unique and important trainings, program experiences and learning experiences demonstrate the value of this vibrant learning community.” The state of Iowa is also doing a lot of innovative things to help empower young adults with ASD.
We were also reminded of the contributions that John Stewart of the Daily Show has made to people’s acceptance and understanding of Autism. For instance, In October of 2013, John hosted David Michell, who translated the book – written by Naoki Higashida, a 13-year-old Autistic boy – with his wife, KA Yoshida, and wrote the foreword, called the book a resource that helped him and his wife understand their own Autistic son. Last year, in May of 2014, John interviewed Ron Suskind, a Pulitzer Prize winning author, about autism and how he learned to talk with his Autistic son through Disney movies. And he has been hosting “Night of Too Many Stars,” a fundraiser comedy show that has been raising money for Autism research and awareness since 2006.
At the conclusion of the presentation, both Mr. Badesch and Dr. Ball entertained questions from the attendees and, once the Forum concluded, they answered questions on an individual basis.
For pictures of the event, please see CLASS Inc. Forum on Youth in Pictures.