A big tent

Since we launched this blog a few days ago, I’ve had many phone calls and emails from Easter Seals board members, staff and affiliates asking me about Easter Seals’ position on topics like chelation therapy and other things mentioned in various comments.

Fundamentally, Easter Seals doesn’t take a position on these kinds of issues. Our goal is to provide an online community where people with all kinds of views, theories, and concerns can express themselves, can share information, and can interact with one another. It’s a big tent that has room for everyone. Ideas and opinions that are controversial are likely to be expressed, and that’s fine. Our position is that we want people to communicate and share.

Easter Seals’ focus is on providing personalized services –- today — for children and adults with autism and their families to help them accomplish their goals in communities across the country. That has always been our focus and will continue to be. And that’s the focus of this blog.

When new treatment modalities and therapies are validated, they will be incorporated into what we do at centers around the country. When new science is verified, that will be incorporated also. We will adapt and change, as our organization has been doing since 1919.

In the meantime, I want to personally invite everyone to join Easter Seals in our big tent community. I am thrilled by the richness of the dialogue so far, and encourage you to tell others about this community.

I’ve found the past few days to be educational, sometimes confrontational, and very often inspirational.

Let’s keep talking.

 

The older you get – the more there is to learn

I have been a professional in the field of disability services for more than two decades – and – I have a lot to learn. This past week I had the opportunity to learn from my esteemed colleagues at the Technology and Persons with Disabilities Conference in Los Angeles. This conference has been nick-named CSUN, as the California State University Northridge has championed this conference from its conception. This annual conference brings together professionals and assistive technology manufacturers for a week of professional development and networking. I am lucky enough to attend every year!

Augmentative and alternative communication (AAC) is the area assistive technology that is of most interest to me. My career has focused on individuals with autism who do not develop spoken language. AAC provides alternative means for these individuals to convey their wants, needs, hopes and dreams. CSUN brings together many of the manufacturers that develop and distribute the technology that is used for AAC in large exhibit halls. I cruised the exhibit halls at looking for new ideas and seeing what manufacturers are developing in the area of AAC. The Assistive Technology Industry Association Web site is a great place to check-out the AT manufactures.

Learning sessions in AAC were also available throughout the week at CSUN. I learned about the use of text-messaging as an effective means of communication for AAC users. A session from Children’s Hospital in Boston described cutting-edge research to promote more effective communication for people with autism. These sessions and many more are wonderful professional development opportunities. I also was able to provide a session to my colleagues about a unique program I worked on in Hawaii to increase parental knowledge and participation for young children who utilize AAC.

I recently visited Amanda Baggs’ YouTube site. She is an AAC user and a person with autism. She has received national attention for a video she produced and published via YouTube, In My Language. I was blown-away by her message about how she communicates with the world. And, her communication strategies include AAC. Learning from the source – people with autism – is always enlightening.

Going to conferences like CSUN, reading professional literature and taking the opportunity to learn from people with autism like Ms. Baggs are all ways that I try to stay-on-top of what is happening in the world of autism. Having the opportunity to see a person with autism, an individual who does not utilize spoken language, successfully convey their message via AAC for the first-time is amazing. I have had this amazing experience many times in my career. This feeling will keep me traveling down the learning path – hoping that my work will include opportunities to support people with autism to become effective communicators. This feeling of contributing helps keep me motivated.

What’s your motivation?

 

Advocacy counts

This April is National Autism Awareness Month. I hope that it will be a time when business and community leaders, politicians, and all of us become more keenly aware of the impact of autism on so many individuals and families across America. It’s a time when we can raise our voices to bring attention to this important issue that affects so many. (more…)

 

Easter Seals and autism?

That is exactly what I thought when I was perusing the job postings at Easter Seals in October of last year.  I was finishing my degrees and looking for work. I thought I would put my newly earned degrees in public health and education to work.  I perused the Easter Seals Web site thinking that I might find a job related to health disparities for people with disabilities, an area of interest of mine within the field of public health. And then I saw it – National Director, Autism Services.  “Autism Services?” What is Easter Seals doing in autism? I have been working in the field of autism for over 20 years, and Easter Seals was not on my radar as a service provider for individuals with autism. I had a lot to learn.

During my years in Hawaii, I had the opportunity to participate in grant projects with Easter Seals Hawaii in the area of assistive technology. The experience with the Hawaii affiliate was resoundingly positive. If there was an opportunity to contribute my clinical knowledge and years of experience in the field of  autism service within an organization like Easter Seals, I wanted to find out what this was all about.

My initial conversations with the team members at Easter Seals were eye-opening. 

  • Easter Seals was providing services to THOUSANDS of individuals with autism, thousands!
  • Individuals with autism were embedded in Easter Seals’ programs throughout the nation. 
  • Easter Seals had silently become the largest service provider to individuals with autism.

And, Easter Seals wanted to champion these current efforts and increase their capacity to serve the growing demand. They were looking for someone to collaborate in these efforts in the role of National Director – would I be lucky enough to “make-muster.”  I was!

I came on-board with Easter Seals full-time in January. Yes, the transition from living and working in Hawaii to working at the Easter Seals national headquarters in Chicago during winter may not be demonstrative of true intelligence – but the opportunity to work with this organization and their commitment to serving people with autism was absolutely a blessing! Easter Seals serves people with autism from the youngest child diagnosed to the older adult needing a positive place to spend their retirement days. We have the ability to support people with autism throughout the life-span.  And I get to contribute to this effort.

You, too, can contribute to the work of Easter Seals. Volunteer at or visit your local Easter Seals. Take a look at the job listings and see what’s available in your field within our organization. Easter Seals is committed to meeting the needs of the community – and you are that community.

Read Dr. Patricia Wright’s biography.

 

Welcome to the Easter Seals and Autism blog

It seems that every day I learn about another family who is living with a family member with autism or about a family with a child recently diagnosed with autism. Many people are now referring to autism as an epidemic. Based on the recent report from the Centers for Disease Control and Prevention about the incidence of autism in America, it’s difficult to argue the point.

Behind the numbers, there are very real challenges for the people diagnosed with autism and for their families. How do they begin to make sense of this diagnosis when there is currently no known cause or cure? That’s where Easter Seals comes in.

For nearly 90 years, Easter Seals has been responding to issues that affect individuals and their families. The same is true about autism. We are launching this blog and Web site because Easter Seals is one of the nation’s leading providers of services and support for children and adults living with autism and their families. We’re unique because we’re working internationally to deliver personalized treatment and service for people with autism — today.

With the creation of this blog, I’m asking members of the Easter Seals family — individuals and families living with autism, autism experts, service providers, and many others — to contribute to the blog discussion about services and treatment options that are helping people with autism right now.

And I ask you to help us understand the challenges you’re facing and how we can work together to change the lives of people living with autism.

There will be more to come — be sure to subscribe to our blog and spread the word. This April is National Autism Awareness Month. Help us let people know that Easter Seals is here to help right now in communities across the country.

Read Jim Williams’ bio