Long before it had a name, long before there was any type of research, long before there was acceptance by society, long before there were resources for families and the children, my youngest brother had a form of autism. This was back in the early 60’s. No one had a name for it so he was labeled emotionally immature. Now it is called Asperger Syndrome. He read books (Homer), newspapers, magazines and retained what he read at the age of two. He was doing simple arithmetic by three and none of this was taught to him. But ask him a question or his opinion on something and he could not communicate what he wanted to say. That lasted all through his lifetime. He could not fit in socially. He had a brilliant mind but could not share that with people. It wasn’t that he was emotionally immature; he just didn’t know any better. He was family-oriented. He cared about people in general.
A couple of weeks ago we were looking at old family movies and there was one of him as a baby about a year old. I did notice something different but due to the lack of research back then no one picked up on it. When he would go into his trance his eyes would get this look and he would get a slight grin on his face and no one could reach him abruptly. You had to do it gently and calmly, otherwise he would jump and get excited. In the movie he was sitting on somebody’s lap and he started that stare. Little did we know at that time what was going on.
My brother eventually attended a special education school and a sheltered workshop where he thrived. It was a great place for him. He went to companies all over the city of Pittsburgh and even traveled when other people would not walk three feet out their door. Unfortunately, for my family and the world, my brother passed away three years ago from cancer.
He taught us in those 15 months how to go through a painful and grueling treatment plan with a positive attitude. He taught us how to die. He never gave the nurses, doctors, and aides one second of problems. He handled every treatment, test and surgery like “this is what we have to do to get it, so lets get it done.” I would explain what each procedure was and he would be fine with it.
If only all patients could be like the man who was diagnosed with a mental disorder not yet named when he was born, lived long enough for it to be identified and then proved to the world, that when it truly counts, people with forms of autism can and are the strongest people we have. My brother Jim was 43 when he died.
This “In Their Own Words” essay is by Peg Bittner, of South Park, Penn.
If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
When a child is diagnosed with autism, his or her parents are often left feeling overwhelmed and confused about what to do next and where to turn for help. Autism Speaks’ 100 Day Kit is a valuable tool for these families and helps make the first few weeks and months after diagnosis a little less daunting. In order to defray the cost of the 100 Day Kit and provide it to newly diagnosed families, we need your support. Each kit costs $25 to produce.
Please support this very important initiative, which directly assists families affected by autism NOW.
- Make a gift of $25 to provide a “100 Day Kit” which will aid a newly diagnosed family today
- Join the Official Autism Speaks Cause on Facebook
- Use your Facebook status to ask your friends to donate to this project and spread the word
The 100 Day Kit includes information about autism and dealing with the news of a diagnosis. The personalized kit lists local service providers, support groups, recreational activities, sources of legal information, conferences, local autism organizations and information about the local chapter of Autism Speaks. It provides insight into getting services for a newly diagnosed child and explains various available treatment options. A week-by-week action plan helps walk a family through the steps they need to take to ensure that they are on the right track. The kit also includes a safety plan and a list of recommended books and informational websites. In March, Autism Speaks launched a separate Asperger Syndrome and High Functioning Autism Tool Kit.
Families whose children have been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit or the AS/HFA Tool Kit by calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator.
Every 20 minutes, a child is diagnosed with autism. When families first get the diagnosis of autism, it can be difficult. Our hope is that the “100 Day Kit” will provide families with a greater sense of hope, with resources, and information that will help make those first few months just a little bit easier.
Thank you from the bottom of our hearts for your continued support.
To date, Autism Speaks has funded $1.9 million in Family Services Community Grants to more than 100 service organizations around the country in the areas of education, recreation; equipment/supportive technology and young adults/adults. The following is from one of our recipients from 2008, the Asperger’s Association of New England which serves individuals with Asperger Syndrome throughout New England:
The Asperger’s Association of New England, or AANE, is very grateful for the generous grant from Autism Speaks that allowed us to offer the Destination: Independence program. Destination: Independence consisted of a series of four courses on independent living skills, reinforced through one-on-one coaching under AANE’s Life Management Assistance Program (LifeMAP). Destination: Independence was designed to meet the practical needs of young adults with AS, who tend to be less mature than neurotypical young adults, are often stuck in their attempts to establish independent lives, and are less likely to be able to resolve their problems though traditional interventions such as “talk therapy.” Participants were able to learn independent living skills in a hands-on manner; learned life tasks with the assistance of a coach; increased independence; and employed problem-solving, social interaction, relationship building, and social pragmatic skills.
One participant wrote on his evaluation form:
I wanted to give you a little feedback on what I am working on. As you may know, I am going to graduate from college in May and I do not think I would have passed this last course without the help of Destination: Adulthood and my LifeMAP coach. So I accomplished that goal. Now, I am working on volunteering at the JFK library and getting a part-time job. Thanks for the help, T.
My LifeMap coach and I have been working on me learning how to use transportation which I think that I could still use practice on. We also worked on going grocery shopping and making healthy food and drink choices at the grocery store! She was helpful with my goals and I would like to continue to work with her.
A coach wrote:
I see increased confidence in the client due to my (the coach’s) validation of her struggles and challenges, and due to success in overcoming of obstacles. We are close in age and so I found that the client looked up to me like an older sister or just a role model. I noticed that my compliments and acceptance of who she was and my encouragement for her attempts at finding a job, acquiring a driver’s license, etc., helped her accept that while her pace might be slower than her peers’ she would eventually get there.
Another coach wrote:
The client, a recent (out-of-state) college graduate, was also very isolated and had the goal of maintaining social relationships, but it became clear that she did not have local relationships to maintain. The coach accompanied her to events at AANE initially, and eventually she began to attend on her own. The coach’s involvement in getting the client to come to AANE was instrumental in making new relationships and eventually led to the client joining a weekly AANE support group and connecting to a therapist through AANE as well.
Congratulations to AANE and Destination Independence on their wonderful program!
Autism Speaks in currently accepting Letters of Intent until June 10, 2010 – get those great ideas in to us so we can continue to serve the community! Please also visit our Advancing Futures for Adults with Autism initiative at www.afaa-us.org and “like us” on Facebook, where we regularly post articles and items of interest regarding adult issues and services.
Many thanks to Peter Krause, Monica Potter, and Max Burkholder of NBC’s “Parenthood” who filmed this PSA to raise awareness about autism and Autism Speaks. This PSA, in the “The More You Know” series, aired after Tuesday night’s episode, Team Braverman, which featured members of the family participating in a Walk Now for Autism Speaks event.
Nantucket Elementary School fifth-grader Rourke Barsanti has Asperger Syndrome and he is a wonderful self-advocate and fundraiser. Last year, he did a PowerPoint presentation about people with autism and presented it to his third grade cluster. This year, he raffled off a whale that he made and donated the proceeds, $62, to Autism Speaks.
Just like Rourke, his family (mom – Sydney, dad – Bob, and brother – Beck) is very supportive of Autism Speaks and the Nantucket Autism Speaks Resource Center. His mom, Sydney Fee Barsanti, is a co-chair of the Nantucket Walk Now for Autism Speaks and a veteran team captain.
Tune in to NBC’s “Parenthood” next Tuesday, May 18 at 10 p.m./9 Central. The all-new episode, Team Braverman, features members of the family participating in a Walk Now for Autism Speaks event.
Peter Bell, Autism Speaks’ Executive Vice President, was on set in Los Angeles and penned a blog post about his experience. Earlier this season, we spoke with Jason Katims, the show’s writer and executive producer. He tells how having a 13-year-old son with Asperger Syndrome inspired one of the show’s main storylines.
Check your local listings for show information.
UPDATE: Watch the entire episode here on Hulu. Also, the episode is being re-broadcast on Saturday, May 22 at 8 p.m. EDT. Check your local listings for show information.
Watch “The More You Know” PSA starring the cast of “Parenthood,” which aired after the episode.