The Silent Ones

Who are the silent ones? They are definitely NOT many of your friends on FACEBOOK. They are definitely not the self -proclaimed cognoscenti crew of celebrities and sports stars. They are definitely not political pundits who are paid to give their opinions.

The silent ones are outwardly “politically correct,” but inwardly they are “politically fed-up” with the arrogance, the lies, the misrepresentations and the endless opinions of those who go beyond just stating theirs, but pummel us with them.

The need to be right does not appear to be a need of the silent ones. The silent ones do not need to boast every time something happens that seems to validate their point of view. Most likely they take mental notes but are not keeping score.

The silent ones are not one type of person, not one gender, not one race, not one religion, not from one country or from one political party. They do not like one kind of ice cream, one sort of hairstyle or favor one type of town. The silent ones live among us everywhere.

Do not mistake the silence of the silent ones for acquiescence. Do not mistake the silence of the silent ones for apathy. Do not mistake the silence of the silent ones for approval.

The silent ones will let you know what they want, what they need and what they know. The time will come.“And the sign said, ‘the words of the prophets are…whispered in the sounds of silence.’”

Opinion: We Can Do Better

This installment of Autism For A Lifetime: Finding Joy in the Journey is the opinion of its author, Linda J. Walder and solely reflects her point of view.

I have tried to think carefully before I write. I believe that neglectfulness in thought before word is one of the biggest problems the autism community is having right now. With a recent barrage of stories focusing on adult autism in the media and several more in the pipeline, I wonder, are we as the drivers of information and opinion truly thinking before we speak? Are journalists acting responsibly when they tailor their presentations to fit their personal viewpoints? Are authors of books doing in- depth research using many different sources and importantly, primary sources (namely autistic adults) in portrayals they profess are accurate? Are people in the autism community such as parents and advocates who use Facebook and other social media taking a breath before they respond to points of view they do not agree with? Some are thinking carefully before they express themselves, but many are not.

It has been almost 17 years since I began my journey in the world of adult autism.This journey started from the most profound grief I will ever know, the death of my little boy. My little boy was nine years old when he died and he was autistic. Everything about his life was unexpected, starting with his diagnosis that in those days was called Pervasive Developmental Disorder. We lived as many families do on a roller-coaster with devastating downs and exhilarating ups, and mostly we tired not to fall off as we went along. And then suddenly the ride ended so abruptly that I could not even move, I could not get up for a very long time. Eventually, I did get up, and I did get off of the roller-coaster, and when I stood before it I knew that I had to get back on. I had to do it for my little boy, and all of his classmates and all for others who like him were on this ride. But it was different now because I could look beyond my fear that was now tragically behind me and into the future with more objectivity.

During the almost two decades I have served as the founder and executive director of this organization, I have seen so much that inspires me, but nothing even comes close to the people I have been blessed to know who are diagnosed with Autism Spectrum Disorders (ASD). Their stories, their challenges, their triumphs, their goodness, their frustrations, their exuberance and yes, even their pain is inspiring. These individuals, of all types, with many different backgrounds, needs and dreams are the people who matter to me most. I also am in awe of the thousands of parents and families who strive on a daily basis to make the world a better place for them. Surprisingly however, I have observed recently that it is all too often the people we would expect to be cheerleaders for the adult movement who are the anti-inspirers.

When non-autistics boil over with their personal fears, pain and doomsday mentality about adulthood and autism they are not advancing the adult autism movement. This is not in any way to say that many of their cries for more programs, opportunities and options for adults are not valid. Indeed, to continue to create more to accommodate the increasing adult population is needed. What I object to is the insensitive way anti-inspirers are expressing their frustrations and also the inaccurate statements that are being made by some. One of the most insensitive kinds of statements I have recently heard goes something like this: “self-advocates just do not understand the needs of those who are more challenged by autism and cognitive disabilities.” This is just not so!  I have spoken with many leaders and organizations who represent autistic adults and the majority do understand the diversity of the spectrum and believe that their calls for acceptance as a matter of human rights pertain to all people diagnosed with ASD, not just themselves. I also believe the only thing we do when projecting fear with divisive language is to create more fear and more division, like fighting fire with fire.

In my view, we should recognize that there are worries, there are needs, there are fears but the presentation should not be one of doom and gloom and “woe is me.” The presentation should not characterize adults on the spectrum as “scary,” for instance. Why must we use the tactics of negativity to attain our goals when we have the chance to inspire America and the world with the good things that have been achieved already?  The vision of all we neurotypical folks should first and foremost be the vision inspired by autistic individuals. Yes, there should be a place in the dialogue for the thoughts of family members and others but we must recognize that these are their thoughts, not necessarily the thoughts of even their own loved one with ASD. Even non-verbal individuals communicate their likes, dislikes, needs and wants and we must take time to listen in more ways than with our ears.

I know that the autism community can do better. I hope we all take more time to think before speaking, to listen with open minds to one another, and to inspire progress through positivity. How can we legitimately ask for more respect from the community at large if we are disrespectful of others within our own autism community? We do not need to paint a picture of hopelessness and despair to the world to affect change, rather, we need to use all of the colors of the spectrum to share the diversity of needs and challenges ahead.

The Crisis of Incompetency

 

Over the past several years you have undoubtedly read about what some have called an “Autism crisis.” About ten years ago, a well-financed and media savvy organization announced the alarming and growing number of children diagnosed with an Autism Spectrum Disorder. Was this an actual “crisis” or a marketing strategy to create more awareness about Autism with the goal of attaining research dollars, public policy leverage and the validation of their family members’ Autism diagnosis? Real or contrived, the alarm was sounded, and the worldwide public heard it. Much has been achieved because of the highly successful media campaigns centered on the notion of an “Autism crisis,” yet were these media-minded campaigns based on truth or fear mongering? That question has yet to be scientifically or otherwise answered by anyone.

There is however no question that we must continue to do more to assist individuals diagnosed with Autism achieve their potential, not only in childhood, but throughout their lives. The Daniel Jordan Fiddle Foundation, a pioneer in the advancement of programs, public policy, resources and support systems benefiting the diverse population of adults diagnosed with Autism, has led the charge to enhance general awareness that Autism is a lifelong condition that needs the engagement of society as a matter of human rights to open doors of opportunity so that adult individuals can live, work and recreate as they choose. The message of the all-volunteer run Daniel Jordan Fiddle Foundation is not contrived as a marketing strategy; it is the reality for adults diagnosed with Autism.

There have been many achievements accomplished since The Daniel Jordan Fiddle Foundation began its mission almost sixteen years ago, and one measure is that there are several other organizations and advocates calling attention to adult autism. But now, in 2016, with all the new attention being paid to adult autism, is it being done in a way that will truly affect change, or is it yet another marketing strategy for those seeking to jump on the bandwagon of what is the “topic of the day” so that they or their organization can get their name in lights yet again? New books have been written recently, interviews by well-positioned media darlings have been had, the same voices and faces we have seen for decades on television or writing books are again labeling what they proclaim is a new “Autism crisis.” The “self-anointed, popular clique” of “self –proclaimed experts” are at it again. The question comes to mind: does this really help the adult individuals diagnosed with Autism live better and more fulfilling lives, or does this help the authors and organizations line their pockets and get their name in lights as they proclaim the next “Autism crisis?” Something to think about, as history repeats itself.

Should we as a society, again follow like sheep in a herd as the next “Autism crisis” is heralded or should we question the authors, the media darlings and those who have made a name for themselves in the business of Autism as to the accuracy of their proclamations?

Ask any adult diagnosed with Autism, or in many cases his or her parent, since many cannot advocate for him/ herself, what their biggest challenge is and they will tell you it is the broken system. When a person transitions from school age entitlements to adult life the system of supports, the stream of information, and the selection of services are incompetently managed through a bureaucratic system that is mind-boggling. The broken system is the crisis that needs addressing, and this not only affects children transitioning to adult life diagnosed with Autism but all children diagnosed with a disability. The call to action that needs to be heard is a call to change the broken system of incompetency.

Please let’s not again fall prey to the voices who have access to media and those who possess the power of money. Let us listen to the individuals and families once and for all, not the self-proclaimed prophets who profit.

The crisis is not a new “Autism crisis” just because those we hear in the media now have adult children and proclaim it so. The crisis is one of an incompetent system that has been around for decades and will continue to exist unless we as the public stop “walking” in the wrong direction and take real steps in actions to change the systems on which adults diagnosed with Autism rely.

 

 

 

 

 

 

 

 

 

 

 

 

 

Welcome To 2015 and A Vision of Hope and Love for the New Year By Guest Blogger and Autism Advocate Kerry Magro

What better way to start the New Year than to read an unedited piece from one of The Daniel Jordan Fiddle Foundation’s admired advocates,  Amazon best-selling author Kerry Magro. Kerry’s new book, “Autism and Falling in Love” tells the story of how he was non-verbal as a child to overcoming the odds to become a national speaker and finding a relationship as an adult. You can learn more about Kerry and his book here.

The Difficulties of ‘Mind Blindness’ in Individuals with Autism

by Kerry Magro

One of the better movies I’ve seen about autism in relationships was the 2009 film “Adam” featuring Hugh Dancy and Rose Byrne. In the movie, Hugh Dancy plays a 29-year-old with Aspergers Syndrome who just lost his father and has to transition to now living by himself for the first time. While in this process he also finds a romantic relationship with a new girl (Rose Byrne) who has just moved into his building.

I had a chance to watch this movie again this weekend and it brought up a lot of different emotions for me. My new book “Autism and Falling in Love” is just coming out this week and in the book I discuss a great deal of the same topics that this movie does. One in particular they emphasize on is “mind blindness.” Mind blindness as Hugh Dancy’s character portrays to his girlfriend is the inability to understand what someone else is thinking. As a 26-year-old adult with autism myself, having this movie out there to discuss this specific challenge some face is very refreshing.

In my book I discuss how mind blindness had made for several difficult scenarios for me in relationships. The inability to express empathy and to do this, to “put myself in the shoes of another,” limited my understanding of others, and made it difficult to develop anything but basic friendships/relationships. People are very complex and reading them—not only from a relationship standpoint but to advance in life, whether it’s through school, employment, on a professional level, is a necessary skill.

Further, there are different names for this theory including “Tunnel Vision.” This has led to not only people I’ve been in relationships with but some of my peers to believe that I’m self-centered, and that regardless of what I’m doing, it’s about me and everyone else has to live with it (which is it farthest from the truth because I feel passionately about other people’s feelings).

On the other hand, these experiences glaringly pointed out, that although I have raised the awareness of what autism is, and put a face on what someone with autism looks like, many people have no clue of what it entails or how it manifests or affects many in our community. I’ve never used my disability as a scapegoat for whatever tendencies I have gone through but what do you do?

This is how I felt in one of my past relationships. I didn’t understand to what extent things were going wrong. What was worse is, when I was told what had gone wrong, I didn’t get the opportunity to try and fix things. Although I start seeking help within an hour of learning what had gone wrong, I couldn’t make things right for us and that has given me one of the bigger lessons I’ve ever had to learn.

What I can share with the people reading this blog when it comes to mind blindness and also autism is simple. Follow my own advice… Autism is never a disability unless you let it become one. I take criticism as an indication of what I could work on to become stronger as a person, but in this situation where I haven’t been able to understand… I’ve just never felt so blind.

Fred Fiddle, Co-Founder of The Daniel Jordan Fiddle Foundation, is Dedicated to Fulfilling A Mission in Memory of His Son

John Goldfarb interviewed The Daniel Jordan Fiddle Foundation’s Co-Founder, Fred Fiddle who explains his role at The Daniel Jordan Fiddle Foundation. 

fiddleFred Fiddle, Co-Founder of The Daniel Jordan Fiddle Foundation

John: What was your goal in co-founding The Daniel Jordan Fiddle Foundation?

Fred:   Daniel was my son, and Linda, the Founder and Executive Director and I co-founded The Daniel Jordan Fiddle Foundation in memory of our son and to carry out his legacy with the purpose of providing opportunities for the diverse adult autism community so as to raise their quality of life and give them a place in the world that would be better for them and their families.

John: Why is being a member of the Board of Trustees important to you and what is your current role?

Fred: As one of the organization’s founders, I continue to help oversee the direction of both short term and long term goals while maintaining the mission to focus on adults living with Autism. I’m the treasurer of The Daniel Jordan Fiddle Foundation, and chair the oversight of all financial aspects of the organization . 

John: Would you please tell me about your job, or what you do now? 

Fred: For many years, I’ve worked on Wall Street. I am a banker, and I’m an investment banker and originate what are known as capital markets transactions.

John: In what other ways have you connected to individuals and families because of your work with The Daniel Jordan Fiddle Foundation? 

Fred:, I’ve developed close relationships with other families that have autistic sons, daughters, nieces, nephews, aunts, uncles, as I’m sure your well aware, this is a situation which has grown in significant proportions over the years. There’s many now that are on the spectrum and I’ve reached out to many of those in need and have been blessed to come into contact with many families that have family members on the spectrum, and it reminds me of times with my son and also reminds me that giving back is something that’s really important in life. 

John: What are your hopes for the Autism community? 

Fred: I would tell you that the future, I would hope continues to improve. I would hope that there would be more organizations either like ours or at least similar enough and that they’re supportive of the autism community. I would hope that government plays a larger role in sponsoring programs and services for those living with autism. Certainly there’s a lot of effort and research that’s gone into trying to establish the grounds on which autism is triggered in individuals, but the bottom line is, there’s an enormous population that are currently living with autism, most of those individuals will live a fairly long life, a typical lifespan, and everyday there are kids that are being born that will at some point be diagnosed, so the size and scope of the issue is significant, and I only hope that the support meets the challenge.

 

 

The Pros of Procrastination

Happy Holidays and I Guess Happy Tax Day!!!!

Autism For A Lifetime

Image Only a few days until April 15th, tax day, and of course I am thinking about procrastination, aren’t many of us? In fact, writing this blog is one of about twenty things I did today to avoid what I really “should” be doing, but then again, I am getting things done that I probably would not have done had I not procrastinated.  Ah, the first pro of procrastination!

I find that I procrastinate when I really do not want to do something because it is boring, requires too much thought or I would just rather be doing something else.  Today is a beautiful and warm day, the first in quite a while, so I took a long walk in the park with my dog Bella.  Another pro of procrastinating: Bella and I got some exercise and the sun shone upon us.

And then there is this very organized but very…

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A Valentine For You

Dear Friends, This is a Valentine created with love and appreciation for you! We at The Daniel Jordan Fiddle Foundation are so grateful for your continuous support for our 12 years of developing, advocating for and funding programs, resources and supportive services that benefit the diverse population of adults living with Autism throughout the United States. Thank you with love!!!

Why is a day like Valentine’s Day meaningful?  For many it is a particularly difficult day.  I read something this morning that reminds me of this…a beautiful woman I know posted on FACEBOOK that for 16 years she has been sending herself flowers on Valentine’s Day and looks forward to the day when someone else will do this for her.  My first thought was how poignant and a little sad, but then I thought, this is good that she loves and values herself enough to send herself flowers on this day.  It is a good message, to love yourself first.

It is also meaningful to take a pause in our busy lives to acknowledge love.  We can all get so overwhelmed with daily chores, commitments and chaos that gratefulness for all of those we love remains unspoken.  Valentine’s Day reminds us to say aloud what is in our heart.

And one final thought on this topic, if you know someone who is alone, or may feel alone today, why not pick up the phone or at least send a text or an email to say, “Happy Valentine’s Day?”  They are three little words that will mean a lot!Image

For those special someones, the other three words (“I love you”) will mean more than anything.

With love to you,

The Daniel Jordan Fiddle Foundation

Do Holidays Get You Down?

We are smack in the middle of the holiday season 2013.  Thanksgiving and hopefully its leftovers are finished.  The wax has been peeled off of menorahs throughout the world, and in some community squares and shop windows fully lighted ones still adorn.  Christmas trees have been decorated with lovely ornaments, and one of the most spectacular ones in Rockefeller Center, New York City is ablaze with colorful lights that delight thousands of shoppers and tourists.  In a few weeks, more thousands of people will decorate themselves for New Year’s eve in Times Square, and everyone, everywhere will bid 2013 goodbye to welcome in a fresh new year.

It is nothing new to remark that all of this fanfare, and the obligatory shopping, overeating, overindulging etc. can get old and can make even the most merry among us want to curl up in bed and never leave our cozy nest. Even if you do not feel this way, you probably know someone who does.

People living with Autism are no different than anyone else during the holidays. For some it is the happiest time of the year and for others it is a completely dreaded misery.  It is important to understand, no matter how one individually feels about the holidays, others may not share your view, and as a caring person, one should try to empathize.  It probably does more good to be supportive rather than to try to drag another person over to your point of view.  So, if Susie hates the holidays and you love them, don’t try to convince her to be a gleeful girl, let her be a subdued Susie—in another words, be supportive. (Consider that supportiveness to be a very wonderful holiday gift to her!)  Of course invite her and include her in your holiday plans too, but be understanding if she says no.  This works the other way too of course, so if Paul is Mr. Holidays, don’t tear down his tinsel.

One way to cope with holiday doldrums is to understand your own personal expectations. An idea is to write down what you hope the holidays will be like for you: who you will share New Year’e eve with; what family members will discuss that may bother you; what you will eat and drink, for instance.  This may help you manage expectations by preparing you in advance for what may come up and what you may or may not wish to do.

Regardless of your perspective about the holidays, it is something we all have to go through as members of our society, like it or not. The days of December will draw to a close and the page of your holiday chapter 2013 will need to end as you herald in a brand new year of possibilities, promises and pleasures.

Wishing you all you dream for and more in 2014—Your friends at The Daniel Jordan Fiddle FoundationImage

A Post From Amy Gravino, Member of The Daniel Jordan Fiddle Foundation Self Advocate Advisory Board

 

The inspiring story of Amy’s vacation to Italy this summer will surely leave you longing to take your own adventure.  Although, just like everyone else, people living with Autism, may or may not enjoy traveling, we encourage those who do to explore places of interest and expand their horizons…Enjoy!

Barefoot in Italy: The Travels of a Food-Loving Aspie
by Amy Gravino

I can hear the bells.

Can’t ya hear ‘em chime?

I did.

For three weeks I heard the bells, in the town of San Marco Argentano in Calabria, Italy, where I visited family this past summer. It takes some getting used to—the sound of loud church bells ringing on the hour, every hour, accompanied by quieter tones on the quarter and half hours.  It’s an almost nightmarish proposition especially for a person on the autism spectrum, at least until the bells become a part of your daily routine.

This trip to Italy was my fourth thus far, but it was a “first” in many ways. When I was growing up, during the summer breaks from school, my parents and I would go on vacation all over the country, from the East Coast to the West. But it never really was a “vacation” for me, because I was constantly overwhelmed by the noises, the lack of routine, strange beds to sleep in, and sights unfamiliar. This made traveling an entirely unpleasant experience for me—and for our family.

The day that things began to change was the day that I learned how to pack my suitcase—which previously my mother had had to do for me. When you’re a kid on vacation, you never have much in the way of control, as you have to go where your parents want to go, when they want to go. 

Learning how to pack my suitcase suddenly gave me control over some element of my travel. I did it by finding a system that worked for me, a system of clearly labeled plastic storage bags for different items, and as a result, the stress of packing disappeared completely.

So when I finished my Masters degree and my mom and I made plans to travel to Italy, I could not have been more excited.

From the third floor of my mother’s cousin’s townhouse, we surveyed the goings-on in the street below. The church across from their building was one of at least five in San Marco, and was the source of the loudest bells that we heard each day. Jagged cobblestones lined the way into the main piazza, which bustled with teenagers, old men congregating in front of the Bar Centrale, and shopkeepers standing on the sidewalks waiting for customers.

There were several green grocers within walking distance of where were staying, but my favorite was the closest one, adjacent to the church. Every day, I would admire the deep red tomatoes on display, along with the rainbow of produce surrounding them: Peppers, zucchini, beans, oranges, apples, and more.  

As beautiful as the vegetables were, they tasted even better. You hear a lot in the news about “eating locally,” which means eating fruits and vegetables that are grown in your area, instead of ones from other parts of the world that are then shipped to supermarkets.

 In the United States, we have Farmers Markets that let us buy locally, but most people do their shopping at the supermarket. In Italy, it is the opposite—people buy vegetables mostly from the green grocer and do not get them at the supermarket.

I will never forget how sweet those red tomatoes were once I finally got to eat them.  Or how crisp and green the Romaine lettuce was, the leaves of which were washed and eaten completely plain at dinner, one at a time, or how juicy and ripe the nectarines were that we had for dessert.

Because I saw the difference between what I buy in the supermarket at home and what I ate in Italy, I gained an appreciation for fresh, local food that I didn’t have before. Now, it’s become important to me not just what I put in my body, but where the food I put in it comes from.

For a person with Asperger’s Syndrome, who may have many food sensitivities and preferences, it can be difficult to eat healthy. Finding out where food comes from and choosing when and where to buy it is another way to give a person on the spectrum an element of control over this facet of his or her life.

In Italy, one feast at the dinner table often gives way to a different feast later that night in the streets. San Marco was no exception, and the Feast of St. Anthony of Padua took place during the first week of our trip. My mother, her cousin, and his wife readily went out into the crowd, but I stayed behind. The prospect of so much noise and so many people in a tightly packed area proved too daunting, and I knew that if I went, I wouldn’t be able to handle it.

The booming crackle-pop! of multicolored fireworks that capped off the night validated my concerns, and then some.  I shuddered and cringed at every explosion, which somehow seemed louder than any fireworks I’d heard before.  My only source of relief was that I was not outside entrenched in the mass of feast-goers when it was happening.

Sensory issues are something that every person on the autism spectrum has to consider when preparing to travel. Planning ahead for a situation like the Feast of St. Anthony might have helped me to take a chance in venturing out, especially if I had a specific, set “exit route” that I could use to escape from the crowd if it became necessary.

It takes time to get used to many new “firsts” on a vacation—your first flight, first hotel bed, and the many new foods, sights, sounds, and people that you will encounter. Being able to travel is an invaluable skill, as well as something that gives you opportunities that you otherwise never would have had staying at home. Whether it’s the sweetness of tomatoes or the unpaved cobblestones moving under your feet, being on the autism spectrum doesn’t have to mean missing out on the fun of vacation.

Everyone deserves a chance to hear those bells chime.

 

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