Autism & Self-Advocacy

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.

​Stephen Shore will be one of the many presenters speaking on Self-Advocacy at our upcoming International Autism Conference! Join him and others by clicking HERE!

Autism Mom Inspired

Shannon Nash with her son Jason, who helped inspire her to launch Autism Job Board, a new website for job seekers with autism spectrum disorder.

Inspiration can come along when you least expect it. For Shannon Nash, an attorney in Atlanta, that inspiration was her autistic son Jason. Jason was diagnosed with autism at 18 months old. Doctors and therapists were skeptical about how much progress he would make as he got older, setting the expectations for her son at a very low level. 

Jason is now 16 years old and needs continuous speech therapy for probably the remainder of his life. Despite needing therapy sessions along with other day-to-day struggles of being on the spectrum, Jason has made a lot of progress. He has excellent receptive language skills according to Nash and she is currently considering sending him to a Minnesota based program to earn his associate degree that will help him succeed in the workforce.

Nash had never anticipated that her son would be able to even consider higher education as an option, but now that it is she is worried about his job prospects. According to a 2012 study from Washington University only 55% of young adults with autism had a job over a six-year period following completion of high school.  The chances of being unemployed and/or not continuing their education are more than 50% greater for young adults with autism when compares to their peers with other disabilities.

Nash decided that she would start looking for resources for her son ahead of time so he wouldn’t become part of those statistics. “I thought surely my search terms were off or there was something wrong with me, but the more I looked, I found very little,” Nash explained. This is when she came up with the idea to build a job board website, called “Autism Job Board” which will not only have searchable job postings, but also information for employers on best practices for hiring and employing people on the spectrum. So far she has received positive responses, although building the job board itself has been a slow process.

Apart from pushing to get more employers registered on her site she hopes that the job board will eventually be able to host job fairs across the country. She remains optimistic that employment opportunities will grow over time for people on the spectrum, “We want to educate people and make them understand this is a workforce to really get behind, and I can tell you it’s going to happen because it’s too many kids aging into adulthood.”

​Day 1 of ICare4Autism’s International Autism Conference will be dedicated to addressing issues of Autism in the workforce as well as discussing current initiative being made toward improving job prospects for people on the spectrum. For more information and registration, CLICK HERE!

Court Allows Boy with Autism to Keep Therapeutic Chickens

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The DeBary City Council is letting J.J. Hart, a three-year-old boy from Florida, keep his therapeutic chickens. Continue reading

Arguments Arise in Autism Community on “Who Should Define Autism?”

As many readers are aware, Seattle Children’s Hospital posted a bus ad, featuring a little boy that read “Let’s wipe out cancer, diabetes, and autism in his lifetime.” The ad was removed after only a week, as it stirred controversy, and offended certain groups. The specific reasons for why groups found it offensive, vary, however, as groups such as Autistic Self Advocacy Network (ASAN) argue “Wipe out autism, wipe out us.”

The Autistic Self Advocacy Network is a nonprofit organization that is “run by and for Autistic people.” [i] The group includes adults and youth, to provide support, public policy advocacy, and services for individuals on the autism spectrum. ASAN is devoted to not finding the cure of autism, but for awareness and acceptance into society. Employment can be a challenge for people with autism, and members of this group feel there is too much emphasis on behavior therapies for children with autism…by their parents. This self-righteous attitude has caused disagreements though, especially against Ari Ne’eman, the national president. A petition to block his 2010 appointment to the National Disability Council included the following argument,

“Mr. Ne’eman and a small faction within the autism community may personally oppose prevention and cure, as is their right, but they do not represent the majority of people on the spectrum, particularly those who are so impaired that they face a lifetime in institutional settings…obscured the harsh reality of autism with rhetoric…does not address the real-life problems of people with autism, particularly the most profoundly impaired.” [ii]

ASAN was not the only group fighting for the removal of the ad. Arzu Forough of Washing Autism Alliance & Advocacy supported the removal, but wants autism groups to work together to advocate for support. She wants people to understand exactly what autism is, and to understand “the depth of support that some individuals with autism need.”

Clearly there are different and opposing views on who has the right to “define autism.” While many diagnosed on the spectrum are fortunate enough to be able to communicate their thoughts, some are not so lucky. Many autistic people are nonverbal, and some are even living in group homes. So who has the right to “define autism?” You decide, and share your thoughts with us.

New Online Course For Parents of Children With Autism Designed by Medical & Educational Experts

 

 

 

 

 

The University of Massachusetts Medical School’s Eunice Kennedy Shriver Center has launched an online course designed to help parents of children with autism better understand behavioral intervention, advocate for their child’s needs in school programs, and navigate the legal rights of disabled persons. The course is divided into ten-modules, allowing parents to set the pace, and is intended for use as early as diagnosis. The lessons follow six families of children with autism spectrum disorder through common scenarios to guide parents in the implementation of Behavioral Intervention strategies. The program manager, Maura Buckley, a mother of two young teenagers with autism, used her experience navigating the various systems of care and education to form this parental guide. Buckley notes having felt uninvolved and uninformed about her children’s daily lives while in school and therapy. She asserts the benefits of the new program saying, “Being able to interact with the professionals who are helping my child, and being able to advocate for what they need is so important.”[i] Seminars can be difficult to coordinate attending, especially for a parent of a child with autism, so an online program allows accessibility to up-to-date information on intervention strategies and educational approaches, bridging the gap between specialists and parents. Additionally, equipping parents with the knowledge of behavioral intervention will allow parents to reinforce their children’s progress from school and therapy programs, providing the most comprehensive care for individuals on the autism spectrum. Parents who take the course will know what and how to inform specialists of behavior at home as well as how to best respond in particular circumstances. The course is available for monthly, quarterly, and annual subscription atudiscovering.org. The experts responsible for the course are in the process of creating an Applied Behavioral Analysis (ABA) course for paraprofessionals, to be released this summer.



[i] Meindersma, Sandy. “Medical School Launches Online Course for Parents of Children with Autism.” Worcester Telegram & Gazette. N.p., 26 May 2013. Web. 28 May 2013. <http://www.telegram.com/article/20130526/NEWS/305269985/1237>.