We are back…Missed you All…read our latest post from Amy Gravino, DJFF Self-Advocate Leader

Time passes so quickly, and we have missed you. But now Linda and The Daniel Jordan Fiddle Foundation are back. We have decided that our first new post should be one written by an adult advisor to our organization, Amy Gravino. There are a couple of good reasons for this:
1) The Daniel Jordan Fiddle Foundation mission is reliant on the thoughts, needs, ideas and issues that affect adults on the spectrum, and all we do is guided by this;
2) Many adults living with Autism have certain preferences for activities, interests, pursuits that make them experts in that area and that inspire them to live fulfilling lives—in short, they find enjoyment doing these things;
3) From time to time we will highlight examples of these activities, pursuits, interests etc. that bring joy to an individual on the spectrum to hopefully inspire others to find their own “joy in the journey” (which is a raison d’être for our blog).

So without any further comment by us…here is Amy’s unedited by us, blog about something that brings happiness to her life—-

“I Left My Heart In Davy Jones’ Locker”
by Amy Gravino

//Here we come, walkin’ down the street…//

I can remember the smile that stretched across my face the first time I heard those lyrics from the television theme song for The Monkees, and saw the images of four fun-loving boys jumping and playing on my screen.

The Monkees—Micky Dolenz, Peter Tork, Michael Nesmith, and my then-favorite, Davy Jones—were as new and present to me as any other musical act that hit the scene when I was in the seventh grade. I had no cognizance of them as a band from the 1960s, out of a place and from an era that was long past.

But for a nearly-teenage girl with Asperger’s Syndrome walking the junior high school hallways of 1996, falling in love with a band that hadn’t been popular in thirty years did very little to enhance my already-lowly social standing.

I remember looking for pictures of the Monkees online, mainly on Monkees.net, which was the only Monkees website I could find at the time. I printed the pictures out, one by one, and proudly hung them on the inside of my locker door. Every time I opened it and saw their smiling faces staring back at me, it was as though I had four new friends, and the loneliness and self-hatred that I felt would abate, even just momentarily.

And when my classmates tore the pictures down, laughing, jeering as they threw them into a nearby garbage can, I would go home, print them again, and carefully re-hang them in their rightful place.

The years following high school were spent discovering myself, but it was not until graduate school—where I had the good fortune to have a professor who was a big Monkees fan—that I re-discovered The Monkees.

With a more mature outlook and a new favorite Monkee (hello, Peter Tork), I began to re-watch the television show and listen to the Monkees’ music, and more than anything, wanted to connect with fellow fans, something I had been longing for since I could remember.

Even though I was thrilled to see the Monkees in concert for my 18th birthday in 2001 (in their “Threekees” combination of Micky, Peter, and Davy, but no Mike), I was still convinced that I was the only person my age who liked them.

But the Internet had progressed dramatically since then, and I was thrilled beyond measure to discover the Monkees “fandom”—a huge group of Monkees fans of all ages in various online communities, most notably on Facebook.

The Monkees were no longer touring as a group at the time, but they were performing as individuals, along with their respective bands. Being that Peter had shifted into the coveted “Favorite Monkee” spot somewhere before that 2001 show, it was he whose solo act I first sought out.

Another change that the passing years had brought was a driver’s license, which helped to facilitate my many concert adventures to come. It all began in the summer of 2009, when I traveled all the way to Connecticut and saw Peter with his cleverly-named band, Shoe Suede Blues, for the first time ever.

And though I did not know it then, at that show I crossed paths with the girl who would later become my best and dearest friend.

As I followed the band from show to show, names that I had seen online soon became familiar faces, and in several cases, developed into deep and meaningful friendships. In my younger years, the Internet was where I went to find friends in the first place; but now, I was using it to keep in touch with the people I met at these concerts who lived a considerable distance away from me.

Missteps were of course made, just as they were when I first began to make friends after high school. It’s entirely too easy to place one’s trust in the wrong people, and in 2009, a 12-year friendship with someone I’d had as a best friend since high school was falling apart. That coupled with my excitement over meeting new friends through the Monkees left me in a particularly vulnerable state, and I could not see that one of my new “friends” was harming me without my knowing it.

It was only through trial and a great deal of error that I finally was able to cast these unhealthy friendships aside, and to free myself from blame and the belief that I had done something wrong. To my everlasting gratefulness, however, in place of those came several of the most emotionally fulfilling and happy-making friendships I have ever had.

One such friendship that I had forged was with a woman who lived in England, but who came to the U.S. to attend one of the Peter Tork shows to which I frequently traveled. We’d spoken online previously, but it was at that show where we met face-to-face for the first time.

Six months later, this woman and I ended up starting a Monkees website together. We were both writers, and had met on a forum for writers and readers of Monkees fan fiction, and after the sudden disappearance of a very popular Monkees fan fiction website, came up with the idea to start our own.

In the summer of 2010, Naked Persimmon—named for the title of a song sung by Michael Nesmith in the Monkees’ 1969 television special, 33 1/3 Revolutions per Monkee—was born. Three years later, the site boasts a Fan Art section, an enormous photo gallery, a section of Monkees quotes and anecdotes, and has become one of the most popular Monkees websites on the Internet, complete with several social media sites that we use to stay connected with our fans.

When I think of that 14-year-old girl watching The Monkees on her television, I know for a fact that she never dreamed that she’d one day be running a website about them. I know that she thought she would always be alone in loving The Monkees, and that she would never find friends with whom she could share that love.

A few days ago, I got together and had dinner with two friends that I have made through The Monkees. We sat there chatting, telling stories, laughing; and our waitress remarked at what a good time we seemed to be having. In that moment, I felt my heart swell almost to bursting, simply because that moment was one I never imagined could be possible.

When I became a fan of the Monkees, they became a part of me.  Despite the initial disapproval of so many, I did not stop being a fan, or change who I was just to fit in. I waited, keeping them close to my heart in that special place that no one else could touch, and over time, finally found what I had been looking for.

The Monkees—Micky, Peter, and Davy—reunited in 2011, and I had the privilege of seeing them three times on their summer tour. I can remember sitting next to my best friend Lynsey in the arena at Mohegan Sun casino, and turning to her with a lump in my throat:

“I have always wanted this: To have a best friend to go see The Monkees with in concert. Right now, my inner 15-year-old is jumping for joy.”

//Oh, what can it mean…to a daydream believer and a homecoming queen…//

NEW YEAR, NEW GOALS…NEW COLLABORATIONS!

 DJF Ignition Grant Program Photo

Today as we all settle into the New Year 2013, we are busy, motivated, perhaps even overwhelmed at all that we need to do and want to accomplish in the days and months ahead! As you rev-up to achieve your personal goals this year, I suggest that you consider how collaboration can help you in all areas of your life to attain the fulfillment and progress you are hoping for in 2013. In my role as Executive Director of The Daniel Jordan Fiddle Foundation, that I have now had for over a decade, collaboration has been the key to our organization’s effectiveness and progress.

In that spirit, I from time to time to feature in this BLOG the writings and thoughts of individuals on the spectrum and others who are making a difference and whom I feel will inspire you in your own journey. Recently, I received the following blog post from an adult individual named Daniel who lives with Autism…

The Gift of Asperger’s  by Daniel Wendler

For many people, a diagnosis of Asperger’s feels crippling.

And I’m not going to lie – having Asperger’s does bring many challenges. It’s not easy to manually learn all of the nuances of social interaction, especially when the rest of the world expects you to know all those things automatically. But having Asperger’s also brings many strengths. And I believe those strengths hold the key to overcome the challenges of Asperger’s. When I was diagnosed with Asperger’s 10 years ago, I was lonely, shy, and awkward.Today, I am confident, comfortable in social situations, and blessed with many deep friendships. I even run a website – www.ImproveYourSocialSkills.com – to help others achieve social success.

How was I able to achieve this? It was because of my Asperger’s, not despite it! When I received my diagnosis, I was presented with a list of social skills that people with Asperger’s often lack. This list sparked an epiphany in me. I realized that my social struggles were not because of something fundamentally wrong with me. I was struggling socially because I lacked social skills (makes sense, right?) Although some people are more naturally gifted socially than others, everyone can improve, and everyone can achieve social success. Improvement looks different for different people, and “social success” will mean something different for you than it will for me. But it’s possible to learn, and to improve. I wasn’t doomed to a life of awkwardness (and neither is anyone else).

When I realized this, I set to work. I devoured books on relationships, etiquette, conversation, body language — anything I could get my hands on. I started to debrief social interactions with my parents and figure out what I could have done better. I made a deliberate effort to go out of my comfort zone to meet new people and make new friends.My hard work paid off. I learned to survive socially, and then to thrive. I learned to make friends, and then how to be a good friendSocial interaction will always be a second language to me. But I am now fluent in that language. My Asperger’s has not been “cured,” but I have learned to thrive. The funny thing is, I never could have overcome the challenges of Asperger’s without the strengths of Asperger’s!  I used my Aspie analytical mind to puzzle through the nuances of social interaction. I used my Aspie determination (some might say stubbornness) to keep studying and practicing even when I was discouraged. I used my Aspie quirkiness and humor to defuse conflict and to find my own voice in social situations.

In every situation, I found that I was using my Aspie strength to overcome the challenges of Asperger’s. Looking back, I realize that for every challenge Asperger’s has given me, it has given me a greater strength with which to overcome that challenge. And for every strength Asperger’s has given me, I have found an opportunity to use that strength to help others.I treasure the moments when my calm rationality allows me to be a solid rock to a friend in crisis, or when my Aspie humor draws a deep belly laugh from a loved one. I take deep joy in my ability to guide others on the path to social success, and great pride when my Aspie insight allows me to see a solution others might have missed. Looking back, I realize that for every challenge Asperger’s has given me, it has given me a greater strength with which to overcome that challenge. And for every strength Asperger’s has given me, I have found an opportunity to use that strength to help others.I treasure the moments when my calm rationality allows me to be a solid rock to a friend in crisis, or when my Aspie humor draws a deep belly laugh from a loved one. I take deep joy in my ability to guide others on the path to social success, and great pride when my Aspie insight allows me to see a solution others might have missed. My Asperger’s has given me the ability to make an incredible and unique impact on the world, and I truly believe that my Asperger’s is a gift. It’s a hard gift, to be sure. But I believe that Asperger’s invites me into a rich life – a life marked by pain and struggle, yes, but also by strength, by joy, by purpose. For those of you with Asperger’s or a similar diagnosis – this rich life belongs to you too. Your road ahead will have challenges, but it will have joy as well.You are the way you are for a reason – you are not broken or wrong, just different. And that difference will equip you to make an incredible impact that only you can make.Your Asperger’s is a gift to you, and you are a gift to the world. Cherish that gift, and don’t give up.

ABOUT THE BLOGGER: Daniel Wendler is the author of www.ImproveYourSocialSkills.com, a comprehensive online guide to social skills. He was diagnosed with Asperger’s as a teenager, and has dedicated himself to overcoming the challenges of Asperger’s and helping others achieve social success. He likes people a lot, so if you are a person, he would love to get to know you! Get in touch by visiting www.ImproveYourSocialSkills.com or www.DanielWendler.com

I hope that Daniel’s story inspires you, as it is inspires me, to find Joy in the Journey! 

What and Who Defines a Person’s Quality of Life?

According to Scott Michael Robertson, an adult living with Autism and pioneer in the neurodiversity movement, a deficit-focused model has dominated most discussions and research relating to quality of life and people living with Autism. Over the years, researchers, scholars, and professionals have widely disagreed on how to define quality of life with regard to people living with disabilities. The World Health Organization’s position paper on quality of life from 1995 (WHOQOL, 1995) defines it as: “Individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.” Carr, Gibson, & Robinson (2001) describe quality of life as concerned with how “impairment limits a person’s ability to fulfill a normal role.” Countless other descriptions of the concept of quality of life abound in academic and professional discourse according to Robertson. As Robertson has shared, below is a synopsis of key areas that current researchers and thinkers in the field of adult Autism may consider in a discussion relating to quality of life:
Core Domains of Quality of Life Indicators:

Self-Determination: Autonomy, Choices, Decisions, Personal Control, Self-Direction, Personal Goals/Values

Social Inclusion: Acceptance, Status, Supports, Work Environment, Roles, Volunteer Activities, Residential Environment

Material Well-Being: Ownership, Financial, Security, Food, Employment, Possessions, Socio-economic Status, Shelter

Personal Development: Education, Skills, Fulfillment, Personal Competence, Purposeful Activity, Advancement

Emotional Well-Being: Spirituality, Happiness, Safety, Freedom from Stress, Self-concept, Contentment

Interpersonal Relations: Intimacy, Affection, Family, Interactions, Friendships, Support

Rights: Privacy, Voting, Access, Due Process, Ownership, Civic Responsibilities

Physical Well-Being: Health, Nutrition, Recreation, Mobility, Health Care, Health Insurance, Leisure, Activities of Daily Living

Professionals working in the field of Autism who focus on this issue generally agree with Robertson on the core domains that encompass quality of life. Dr. Robert L. Schalock’s (2000) comprehensive review of papers on quality of life from the last 30 years, on which Robertson relies, identified the eight core domains listed above and their underlying indicators.

Like the neurodiversity model, Schalock (2000) outlines quality of life domains in a manner that fuses a social model of disability with an individual commitment to self-determination and self-advocacy. The framework also rejects a deficit model of disabilities in favor of a perspective that embraces strengths and difficulties, as well as human diversity writes Robertson in his article entitled, “Neurodiversity, Quality of Life, And Autistic Adults: Shifting Research and Professional Focuses Onto Real-Life Challenges.”

Central to any discussion about quality of life is the person; and every other perspective is a distant secondary opinion. There are individuals on the spectrum who can spend every waking hour listening to music and they are perfectly happy and fulfilled. There are individuals on the spectrum who never utter a single word yet they communicate brilliantly through their artwork. There are individuals on the spectrum who derive immense satisfaction from scanning books at a library or stocking shelves at the local supermarket and they perform these jobs with great efficiency and take immense pride in their accomplishments. Aren’t these, and countless other examples, indicators of an excellent quality of life?

Our perspective as onlookers should not be to “put our heads on the shoulders of others” but rather, we should be supportive and provide non-judgmental endorsement of individuals on the spectrum rights to enjoy their lives as they deem fulfilling (albeit in safe, healthy and legal pursuits!).  Our efforts would be better spent opening doors that provide opportunities for people on the spectrum to live, work and recreate in the community so that they can discover personally fulfilling avenues. This is a core goal of The Daniel Jordan Fiddle Foundation in our development, support and advocacy efforts that include programs, public service information and resources, and public policy reflective of the goals, needs and ideas of the diverse population of adults living with Autism.

As you move forward in your own life, consider the core domains of quality of life presented above. The vitality of your own experiences and choices propels your quality of life. So too, for people living with Autism, the right to make individual choices and pursue a life of self-determined meaning is vital.

Read a Guest Post From Kerry Magro, An Outstanding Advocate Living with Autism

When He Grows Up

This blog post is by Kerry Magro. Kerry, an adult living with Autism, and an advocate for the Autism community. He recently started a new video blog called “My Autism My Voice,” where he discusses a variety of Autism-related topics. If you would like to contact him directly about questions/comments related to this post he can be reached at kerrymagro@gmail.com or through his Facebook page here.

I often asked myself where I would be when I grew up. Some of the questions I asked myself were…

  • Would I go to college?
  • Would I live independently?
  • Would I have a job?
  • Would my dreams come true?

These are some of the more simple goals for adulthood that people strive to achieve but for me it was always something more. You see, when I was I was 4 I was diagnosed with autism. In my life I’ve gone through countless challenges to get to where I am today. Today, I’m a college graduate, living in an apartment with 2 of my close friends and am a hired consultant for Autism Speaks.

One of the bigger problems I see out there in the autism community today though involves when children like I once was grow up. Where do we go? What do we do? What services are there to provide and protect us? When I was growing up, I was lucky enough to have a strong and loving support system at home to help me even in my darkest hours. This is where I’m concerned for the future and which is why I strongly support the work done here by The Daniel Jordan Fiddle Foundation.

Today, we have over 1.5 million people in The U.S who are living with autism. I think one of the main things we forget when we look at autism is that autism doesn’t just go away once you hit 18. It’s something that is a part of who you are for your entire life. Many autism-related organizations and resources today often focus on how to help with children, how to help with early intervention, what treatments to use, but when it comes to resources for adults I think we are still missing out.

And at what cost will this be for our loved ones? Children do become adults at some point. The transition into early care services to adult services needs to be a smooth one and we are not there yet.

So what can we do? First I truly believe we must focus on a long-term perspective of what adults need. Autism is a very wide spectrum. I often tell people, “If you know one person with autism…well…you know one person with autism.” We must look at the range of what is needed between treatments, services, housing, employment, etc. We must have a blue print of what this looks like as well which is why I’m very grateful for Daniel Jordan Foundation’s initiative focused on Blueprint Programs of what this looks like.

At the end of the day though I think our best strategy involves focusing on awareness efforts. If we look at it for example as parents saving up for college for their kids we need to start saving up on awareness efforts so once the time comes we know what’s needed and how to provide it. That’s the challenge that lies ahead for our loved ones when they grow up.

Let’s make the effort for that tomorrow, today! There is so much hope out their within our community so let’s stay focused, stay motivated, and keep making a difference! Good things lie ahead if we do it together!