Sometimes It Takes A While

via Sometimes It Takes A While

Sometimes It Takes A While

Have you noticed the truth of the well-known expression, ” Rome wasn’t built in a day?” As many of you know, it has been some time since I added an installment to Autism for a Lifetime: Finding Joy in the Journey, and I can explain that: I, and our beloved Daniel Jordan Fiddle Foundation have reached a pinnacle we could never have imagined nearly eighteen years ago, and quite frankly I have had to sit with that (in a very deep and good way) for the past several months. For some of you who are new to our mission and why we started The Daniel Jordan Fiddle Foundation, and for those who have been with us since the beginning, I hope you will not mind a brief synopsis.

The Daniel Jordan Fiddle Foundation is named in honor and memory of my son who was diagnosed with Autism Spectrum Disorder (ASD) at age 2, and who passed away unexpectedly at age 9 due to SUDEP ( Sudden Unexpected Death in Epilepsy), a rare comorbidity of ASD. For several years before my son’s passing, I started to vigorously research what options existed for him to live, work and participate in community life as an adult, and to my dismay there were few, if any avenues to travel.  This was over twenty-five years ago.

Fast-forward to the formation of The Daniel Jordan Fiddle Foundation, when with the counsel and support of a magnificent Board of Trustees (mostly all of whom remain board members today since day one), we decided to focus our mission on adult autism because no other organization in the United States was addressing the needs of children as they aged to adulthood, and throughout their adult lives.  Many have stated that our mission was avant-garde and trailblazing, and indeed that has been the case.  Yet in my view, nothing about this observation is self-congratulatory, in fact quite the opposite.

The Daniel Jordan Fiddle Foundation Board of Trustees focused on what we all felt were unmet and unaddressed needs, and we had the passion and abilities with our combined skills to make the dream Fred Fiddle, (co-founder and Danny’s dad) and I had for our son  a reality for others.  We started in the grassroots with local organizations from our home-base in New Jersey, and gradually expanded across the United States to establish programs from coast to coast, encouraging, challenging and creating through collaborative vision and expertise, a wide array of opportunities for adults diagnosed with ASD.  Opportunities to participate in recreational activities from camping and horseback riding to dog training and bowling and much more. Opportunities to create art, graphic novels, perform in original theater productions, record music in professional studios, and much more. Opportunities to turn passions into employment from farming to computer and technology jobs, to woodworking and furniture design to baking and culinary products, and much more. Opportunities to live independently in apartments and supervised housing in rural, suburban and urban communities, and much more.

We always have stayed true to our vision, that it is a matter of human rights for all adults diagnosed with ASD to have opportunities that help them reach their greatest potential with respect and dignity. This vision transcends to my own work as an advocate and public speaker as I have made my way from Washington DC to the United Nations, and addressed audiences who are not familiar with the challenges and triumphs of ASD.  This vision has also led to meaningful collaborations with other organizations such as the Autism Society of America where we have established an annual honor called, The Daniel Jordan Fiddle Foundation Leader in Adult Autism Award that is presented at their national conference to an individual, business, service provider, family member and others whose life and work inspires us all.

In 2014, we embarked on what we feel is the apex of our work as a groundbreaking national organization.  Grateful that after nearly two decades, several other organizations are now making wonderful efforts to address the needs of adults diagnosed with ASD, we knew it was time to look to the future, and blaze another trail. Again, our dedicated Board of Trustees met the challenge with the establishment of The Daniel Jordan Fiddle Foundation Adult Autism Endowed Funds at America’s great universities.  We decided that each fund would have a particular focus based upon the areas of adult autism that the Foundation has pioneered.  To learn more about our endowed funds at Yale University, the University of Miami, Brown University, Rutgers University and Arizona State University, and how each assures an in perpetuity focus on a specific area of adult autism for generations to come, visit  For us, these endowed funds have an extra special meaning in that they will be a continuing legacy for our organization’s namesake.

So, now you may understand why it has been time to step back and take a breath! In one of the first speeches I ever gave, I quoted Saint Teresa who said, “Every drop of rain matters to the ocean,” because I believe that every contribution we make to help another person matters. I know The Daniel Jordan Fiddle Foundation has made meaningful and lasting contributions to the autism community and for that I am truly grateful to have the chance to serve. The incredible individuals and families and professionals I have had the honor to know on this journey are my heroes.  There is so much talent, so much innovation, and so much to be thankful for, and I am blessed to see how the seeds we have planted together have grown and will continue to flourish.

None of this, or anything worth doing in life happens overnight.  Often we move so diligently through our days that we overlook the small victories that over time add up to much more than we could ever imagine. While it is great to achieve big goals and be recognized for them, I have learned that what is so much more meaningful to me are the individuals who inspire these goals. We need to take the time to listen to adults diagnosed with autism, and their families, and not control the conversation.  Sometimes we need to slow down and sit with people, and just listen.  Sometimes we need to be quiet on our own, and step back.  Sometimes it takes a while, and then we know what is next.

With my love to each of you who took the time to read this, Linda














Why is it that everything has its day? There are of course the long celebrated traditional days like Mother’s Day and Father’s Day.  For the romantics among us, there is Valentine’s Day, and for the winter weary there is Groundhogs Day.  There are numerous annual celebratory days that most people like because it means a long holiday weekend, and a day off from work; Presidents’ Day, Columbus Day and Memorial Day are some of these.

Now, almost every cause, be it one relating to illness, racism, sexism or multiple other “isms” has a day too.  In fact, I bet that we could take the calendar for 2018 and find some sort of celebration for every day of the year.  This is in addition to the birthdays, anniversaries and graduations we celebrate individually.  Frankly, I could use a personal secretary to keep up with it all, and some folks do have this, its called a “social secretary.” Most of us however rely on our calendars on our phones or desktops to keep up with this stuff but sometimes keeping tabs is overwhelming.

For those among us who feel the need to see their cause’s signature colors shining on lights on the Empire State Building or other Federal and State structures, these awareness and celebratory days perhaps give them the recognition and validation they seek.  But, forgive me, if I just do not support this kind of self-serving and annoying trend.

It is my observation that “causes” use this kind of awareness day to raise money or congratulate themselves for accomplishments. These kinds of days are also so competitive pitting like-minded causes to compete for attention and notoriety. And of course the dutiful media falls right into the trap, running stories about the “cause du jour” and enhancing the whole business of political correctness. Yes, it is a business folks!

May I thus be so bold as to suggest that we do away with most of these “DAYS” (alright we can keep Mother’s and Father’s Day) and instead focus on what is REALLY important: doing good for the world and doing so every single day!  As my wise grandfather taught me, “self praise is no recommendation.”  We do not need all the fanfare of celebratory and awareness days, what we need is to make each day matter for what we care about.


Jumping Off…

By Linda J. Walder

This is the jumping off point for today, written by filmmaker and writer Simon Fitzmaurice, “Society is predicated on the idea that we all have the same wants and needs. But that’s only when you reduce us to the same. What’s different about us is just as important.”

The other night, at a friend’s home for dinner, the question arose about autism. What is it?  What are the “characteristics of a person ‘with’ autism?” My response, and quoting my friend and colleague Dr. Stephen Shore, “When you know one person with autism, you know one person with autism.”

The discussion then moved to neurodiversity, and my point that we are all different, and unique, and in my opinion, that is what makes the world fascinating and stimulating. “But isn’t it so sad,” said the hostess. “that many autistic people will not be able to live their lives experiencing and doing so many things we can?”Another guest answered, “but maybe they do not want to do those things you speak of and maybe it never even crossed their mind to do them.”

This has been what some view as the BIG problem with the “cure autism” mentality that others embrace.  Those who espouse the view of autism as a “disease” that needs “curing” versus those who do not believe autism is an illness but rather, a manifestation of what has been called  “different brains.” The response of many “cure” folks has been, “how cruel and unthoughtful are those who do not live with the sleepless nights and a nonverbal, frustrated and behaviorally challenged child to believe autism should NOT be cured?” “Have those who do not believe in ‘curing autism’ walked in my shoes?”, they proclaim.”

I have been thinking about both sides of this discussion for many years, first as a parent, and later as an advocate and not-for-profit leader in the autism community. The one consistent observation I have made is that this debate itself is really the crux of neurodiversity. If all opinions are based upon how a given individual processes their world of experiences, so too the notion of “curing” autism is based upon one’s experiences of autism.

Getting back to where I jumped off in the beginning, it seems to me that the duel between the individual and the society has and will always exist.  Our laws, our organizations, our secular and religious institutions are all based upon preconceived ideas of right and wrong and how “things” should be and should not be done. There is an order in this that creates a sense of security that humans crave. But the truth is we all do not have the same wants and needs, and our compassionate souls might better take the lead, traveling in less secure places, and opening our minds to what seems difficult but is essentially very easy: acceptance. We do not want our children, or anyone else’s children, relatives, friends, or more to suffer, but should we define what is suffering for them?  And do we even know for sure that they are suffering?




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 him, 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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