As Autism Speaks gathers information on residential services and supports for adults on the autism spectrum, we would like to hear from our families on your experiences with housing. Please share your stories on our blog.
World-Class Experts and Parents Explore the Transition of Children on the Autism Spectrum into Adulthood
September 30, 10:00 am – 12:00 pm ET/Doctor Radio, SiriusXM channel 81
This week on SiriusXM’s Doctor Radio Reports, host/veteran journalist Perri Peltz and a panel of world-class doctors, experts and parents of affected children examine the leading concern of parents with children on the autism spectrum—what happens as the children get older and the parents aren’t there to assist them? Will they be able to get a job, support themselves and find the support they need? In addition, what happens when parents are no longer there to provide care?
Geraldine Dawson, PhD, Chief Science Officer, Autism Speaks, Research Professor in the Department of Psychiatry at the University of North Carolina at Chapel Hill,Peter Bell, Executive Vice President of Programs and Services, Autism Speaks, Lisa Goring, Vice President of Family Services, Autism Speaks, Melissa Nishawala, MD, Medical Director of the Autism Spectrum Disorders Clinical & Research Program at the NYU Child Study Center and Jerry Hulick, Senior Planner with The Washington Group/Mass Mutual’s Special Care Planning Team join Peltz for this two-hour special, offering advice/tips on transitioning teens with autism to adulthood, including:
- how to find appropriate housing situations for your autistic child
- how to find support for their medical, psychological and social needs
- estate planning tips to cover the cost of long-term care
- establishing trust funds, applying for disability, and assigning guardianship for care and financial security after you’re gone
- the newest developments in diagnosing and treating autism spectrum disorders
- the latest in new medications and medication research to treat core autism symptoms as well as associated issues
Listeners are encouraged to call 1-877-NYU-DOCS (I-877-698-3627) or email firstname.lastname@example.org with their questions.
Doctor Radio Reports: The Future of Autism will replay October 1 at 6:00 pm and October 2 at 8:00 pm ET.
This post is by Tara Washburn, an adult with Asperger’s Syndrome. She says, ‘I was diagnosed with Asperger’s Syndrome at age 28. I have spent the last 5 years coming to understand where I am now and what was happening inside of myself when I was a moderate-low functioning child. This is Autism from my perspective – Autism from the inside out.’ Visit Tara’s Blog, ‘Hearts that Feel‘ for more.
Autistic individuals are often put into a spectrum. This spectrum is an indicator showing how well your loved ones are able to adapt in society. I also have a spectrum, but it has a different meaning.
Everyone is on my spectrum. There are many that are on the low end of your spectrum that are on the highest end of mine. There are many who are successful (according to the world) who use manipulative means to make circumstances suit them. These people are on the low end of my spectrum. My spectrum measures function in lies or truth. It measures from despotic darkness to liberating light.
I do not pretend to be, or comprehend, the light. But I’d like to share my understanding of it and how it relates to individuals that are placed on your spectrum.
The light of truth is blinding when we are not used to seeing it. For example, imagine that you are outside on a dark night and suddenly a brilliant flash of lightning streaks across the sky. Initially you flinch and are filled with both fear and wonderment. So much is determined in that flash of light. Either you cling to the fear of the lightning, so brilliant, powerful and scary, or you cling to the wonderment, so new and somehow enticing.
Likewise, in the end, we either choose the fear that leads to hatred and suffering, or we choose the courage that leads to love and healing. There is no other path, really. All choices ultimately end in either place: we cling to the darkness or we embrace the light.
There are several ways that the world can harm to your loved ones. There are selfish people who take advantage of others, evil people who molest and make afraid, misguided people who unintentionally harm, clumsy and careless people who maim by mistake. Yet, focusing on situations that bring harm, and the individuals responsible, will not bring light to those who are seeking it. It may “take down” one more institution or individual, but it will not stop the abuse, lies, greed and corruption at the heart of the matter. If you fight them using their own weapons, you lose. Period. You cannot experience a victory for light using darkness.
I have often seen homes that cling to fear – the pain and anguish never seem to vanish out of their lives. I have seen homes that embrace truth – the healing and light seem to permeate not only those who live there, but all who enter. When I enter this kind of home I leave feeling as though I am in Heaven for a moment. I have seen other children on the “spectrum” who are likewise affected.
If you truly want to help your child, forgive those whom you feel have wronged your precious one, no matter the motive and reason. Forgive, love and you will see your child light up. The next time he begins to rock and cover his ears, running from darkness, look inside, find light and show him that there is a safe space in you.
Back by popular demand: The “Got Questions?” feature of the Autism Speaks Science blog. Today’s answer comes from…
I can remember starting college and how anxious I felt facing the new and challenging environment. I had to meet such a range of new people, deal with academic pressures, organise my day and get to appointments on time, manage my finances (I still struggle!) and generally look after myself. Such an upheaval tests any young person—all the more so for a young adult on the autism spectrum.
So what can help? First, remember that US and international legislation supports the right to a college education for individuals with disabilities. Educational institutions are required under the Individuals with Disabilities Education Act and the Americans with Disabilities Act to provide services for students with an autism spectrum disorder (ASD). The college are required to make all reasonable adjustments to accommodate the needs of students on the autism spectrum and to avoid discrimination based on their disability. (See Ralph Savarese’s blog post on Oberlin’s acceptance of his son, DJ, possibly the first nonspeaking student with autism to live in a US college dorm and be accepted to such a highly selective US college.)
In addition, there are many steps that parents can take to help their son or daughter have a rewarding college experience. Transition planning is key. I encourage you to work with your child’s high-school and college advisors to draw up a transition plan that extends from before the freshman year to post-graduation. Consider such issues as the appropriateness of a college’s location, available facilities and course content. It helps to visit the college, meet with at least some of the teaching staff and tour classrooms and dorms with an eye for how well they accommodate your student’s needs.
As part of the transition plan, work closely with the college’s disability services. Of course, this requires that your son or daughter discloses his or her ASD and, if necessary, provides the necessary documentation of disability and needs. Armed with this information, the disability office can organize an assessment of need and provide learning supports. These can include both psychological and behavioral services, assistive technologies (e.g. a recording device for a lecture) and academic aids such as note-takers and extra time in exams. It is important to have assessments of need conducted early so that learning supports are in place when the student starts coursework. Then, once a year, ensure that college staff review the effectiveness of the support program.
Having a social mentor can be particularly useful. Autism Speaks’ college program–Autism Speaks U–promotes awareness and advocacy for students with ASD and may be one source of social mentoring during college. Sometimes just a friendly ear is needed, particularly at times of increased pressure (e.g. first week of college and exams).
Before the start of classes, see if you can get an advanced class schedule. Consider the timing and distance between classes—again from the point of view of the demands placed on your student.
Finally at least a year before your son or daughter graduates, begin planning an “exit strategy” in consultation with the school’s careers office and other college staff familiar with your now-adult child.
With the right planning and support, college can be a great environment for young adults on the autism spectrum. I hope your son or daughter has as much fun as I did.
Here are some additional resources:
1. The Autism Speaks’ Transition Toolkit, particularly the section on Post-Secondary Educational Opportunities.
2. The TEACCH Autism Program of the University of North Carolina-Chapel Hill.
3. Preparing Students with Autism for College, and Preparing Colleges for Students with Autism, Hurewitz and Berger (2008).
4. Supporting More Able Students on the Autism Spectrum: College and Beyond Journal of Autism and Developmental Disorders VanBergeijk, Klin and Volkmar (2008).
5. The [UK] National Autism Society’s Guidelines for Student Mentors.
Got more Questions? Please email us at email@example.com.
In a single generation, autism has become one of the most common developmental disabilities, affecting an estimated 1.5 million Americans. With so many children diagnosed in the 1990s, over the next decade, hundreds of thousands of them will reach adulthood. How do we handle the upcoming needs of the adult autism community?
On September 7, Congress will begin considering the renewal of the Combating Autism Act of 2006. Signed into law by President George W. Bush, it authorized nearly $1 billion for combating autism spectrum disorders through public awareness and enhanced federal support for research and treatment.
And there’s a lot that we can do from a private sector standpoint as well. To talk about the steps autism advocates recommend, Alison Stewart spoke with Peter Bell, executive vice-president of Autism Speaks, and the father of a teenage son with autism.
For more information, please visit Need To Know on PBS.
This is a blog post by Shelley Ourian, a young woman who participated on the stakeholder panel during the Advancing Futures for Adults with Autism Congressional Briefing last July in Washington, D.C.
It’s been a year since I was invited to participate in the Congressional Briefing sponsored by Advancing Futures for Adults with Autism (AFAA) in Washington, DC last July. I was a part of the Stakeholder Panel, along with a few other individuals living with autism and their family members. Looking back on the whole experience, I felt very humbled to be in the presence of many brave individuals, dedicated to make people more aware of the need for more funded programs for adults living with autism. The moderator, Linda Fiddle, founder of The Daniel Jordan Fiddle Foundation, was such a wonderful addition to the Briefing. It was amazing how she took so much time to get to know all of us individuals and to guide us through the process of advocating for ourselves and for everyone with everyday challenges. If I could something like this all over again, I would do it in a heartbeat!
What I hope for in the future is for there to continue to be a positively growing progress in funding for programs for adults living with autism throughout the United States. I also hope for the neurotypical population to see those adults as equals…as human beings who can bring their own abilities and contributions to society.
To view the summary of the AFAA Congressional Briefing, visit the AFAA website at www.afaa-us.org.
A powerful film directed by Emmy Award® winner Janet Grillo, FLY AWAY narrates the story of Jeanne and her autistic teenage daughter, Mandy. Jeanne has cared for Mandy since the day she was born, growing closer every day to a child who is charmingly offbeat one moment and nearly impossible to manage the next. In the dog park, Jeanne encounters Tom, an easygoing and accepting neighbor who sparks a romantic interest, but she finds juggling Mandy’s care and her own career leaves little room for a new man. As the pressures of work and her child’s needs increase, she must decide whether or not to enroll Mandy in a therapeutic residential facility. Over the course of a few weeks, Jeanne is confronted with the most difficult decision a parent can make: to let go, allowing her child to grow, but also grow apart; or to hold on tight and fall together.
Beth Broderick and Ashley Rickards discuss how their off screen friendship and respect created the onscreen intimacy and bond between mother and child.
Here is the theatrical trailor
FLY AWAY’s narration of teenager with autism is relatable for many families. The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood. For more information, visit here.
“FLY AWAY is now available nationally on DVD for sale/rental/streaming, or on VOD.” For info contact http://www.flyawaymovie.com, 10% of proceeds benefit Autism Speaks.
New Video DVD: http://www.newvideo.com/flatiron-film-company/fly-away/
TimeWarner Video on Demand:http://goo.gl/aykS2