No Regrets

January 17th, 2023 marks twenty-three years since my son, Danny died. His lifetime continues to have a profound impact on me, truly guiding my life in many ways.

I believe the experiences of our lives are encountered for a purpose, and it is our choice how we engage. Often, choices are not easily made, and it would be helpful to have some guidance. This quote from Lewis Carroll came across my path recently, seemingly randomly, or was it?

IN THE END… We only regret the chances we didn’t take, the relationships we were afraid to have, and the decisions we waited too long to make.

As time has passed, I am more acutely aware of the temporal nature of life. The words of Lewis Carroll feel like a guidepost, a manifesto, perhaps divinely sent to be shared on this day of remembrance as advice on how to live life.

Lewis Carroll’s insightful message is a reminder not to let fear or uncertainty prevent us from moving forward in life, despite the possibilities of unpleasant, unexpected, or unexplainable occurrences. Even-more, if unconditional love comes to your doorway, do not hesitate, let it in, because the love we share is all that remains when we remember. No regrets!

Communication is Key in Autism

Speaking of communication, it has been quite some time since I communicated with you. When we do not communicate, there is really no excuse, so I will not make up a false one. Truth is, I have been focusing on other things, but this does not mean you have not been on my mind. Isn’t that how relationships are at times? Anyway, I am back, and in 2023 I will be more present for those still with me, and for those who choose to newly engage with “Autism for a Lifetime: Finding Joy in the Journey.”

When a recently diagnosed person is titled with Autism as part of their identity, the word communication comes up a lot. Their diagnosis may include descriptions like “communication deficiencies ” or “”communication impaired” or “communication challenged”: all meaning that the individual has difficulty communicating their thoughts and feelings, at least in conventional ways like conversation. Once the individual, in the case of a child, enters a school program, their communication challenges are a prime focus of their education. If a person is diagnosed as an adult, they most likely have figured out strategies on their own to compensate for communication difficulties. In most cases, improving communication skills is a continuing focal point for people with Autism.

Ironically, the Autism community of professionals, service providers, organization leadership and others working to improve and support the lives of people with Autism have concerning communication issues themselves. For example, at times it seems that organizations are competitive with one another, not listening and elitist, rather than being collaborative. Other times, there is divisiveness regarding respectful terminology and identity depictions that are offensive and hurtful to individuals. There is a deep emotional component to Autism that is overlooked because of the remnants of a Kanner-ish mentality that Autism parents and their offspring are emotion-less. Nothing could be farther from the truth!

As we begin a new year, I hope that we, as an Autism community, will take time to look within our professional and personal demeanors to reflect on how we can improve our communication with one another. If we cannot share honest dialogues between ourselves and put in the effort to improve relationships within our own Autism “family” how can we expect the world at large to connect with our mission of acceptance that fosters the best lives possible for all people with Autism?

You Are In Control

There is much we as individuals cannot control. I am sure you can come up with your own long list of things that are out of your control. During times when you feel out of control, like now during the Covid-19 pandemic , when there are so many unknowns and all of the rules of engagement have been turned upside down, I have found it helpful to switch mental gears and focus on the things I do have control over. I hope this idea is inspiring for your own thought process, not only now, but as a life practice. I emphasize that it is a practice and will not come easily at first. I am not a psychiatrist, psychologist or therapist, just a person trying to figure out how to get through difficult times, like many of you.

Several months ago, when we all first learned of the onset of the mysterious and tyrannical Covid-19 many of us were in a state of confusion, shock and fear as our Federal government, State and local governments and all of our societal, financial and religious institutions and businesses began to strategize. In each of our homes, we had to strategize and adjust nearly every aspect of our daily lives. For many these changes were and have remained overwhelming, and rightfully so. Not only do we have to cope with all of the “normal” stressors and challenges but now even our routines and way of life have changed. For individuals diagnosed with Autism and their families these changes can be even more unsettling.

When I started thinking about these stressors and challenges, I felt myself becoming even more anxious. Then I took step away from the anxiety, a big giant step away, and I saw that my anxiety was largely based on a feeling of being out of control. True, I could not control many things, but I could control my response to feelings of loss, loneliness and uncertainty in the present. I decided then and there to regain some of the power that this crisis and life events were trying to steal from me; that decision was the first thing I could control.

I began a daily practice named “You Are in Control” and began to post one per day on our Instagram @fiddleautism. My hope is to inspire you to look at your life and focus on the things that you can control and in doing so, take back your

power from anxiety, fear and defeatism. I will share a few of my own here with you, and I gratefully welcome your sharing your ideas on @fiddleautism too.

Here are a few of my daily entries:

You Are in Control: You have the power to become more self-sufficient and increase your skill set.

You Are in Control: Isn’t it fantastic to admire others for their talents, selflessness, creativity…and more? Tell them!!

You are In Control: Pamper yourself, take care of yourself, take the time…it’s your time to take.

You Are in Control: There is beauty blooming right in front of you and have the power to see it and enjoy it.

You Are in Control: You decide how to play the hand that is dealt to you.

Perhaps the ways we live are changing, and will be changed forever, but you can determine how those changes impact you for better or worse. Remember, you are not alone, your friends, colleagues and family are here for you during this pandemic and beyond.

Linda J. Walder is the Founder and Executive Director of The Daniel Jordan Fiddle Foundation established nearly 20 years ago as an all-volunteer run organization focused on adult Autism. The vision of The Daniel Jordan Fiddle Foundation is for a world of acceptance that values each individual diagnosed with Autism with the hope that each person feels joy and support in attaining meaningful accomplishments throughout their life.

The Daniel Jordan Fiddle Foundation Leader in Adult Autism 2020

www.instagram.com/p/CI5oQCaDdJs/

Individual Liberty is Not Unconditional

By Linda J. Walder

Today, more than ever, we are called to question the meaning and extent of individual freedom. Liberty is construed by some, and even defined as the “ability to do as when pleases,” but those who believe this need to understand the United States Constitution as it was intended and has been interpreted by the United States Supreme Court for generations. Even if one is a strict constitutionalist, it is not written in the Constitution itself or in the Bill of Rights or in any Constitutional Amendments that individual liberty is unconditional.

Perhaps one of the most famous Supreme Court cases addressing the First Amendment right to freedom of speech was Schenck v. United States in 1919 which held that the Defendant’s speech in opposition to the draft during World War 1 was not protected free speech under the First Amendment of the United States Constitution. Justice Oliver Wendell Holmes is quoted (and misquoted too) for writing that “you cannot falsely yell fire in a crowded theater,” as the sort of speech that would not be protected under the First Amendment. The Supreme Court, legal scholars and political writers among others have since examined and enumerated on Holmes’ interpretation in court cases and legal analysis probably thousands of times over. Today, in 2020, we look to see if the speech falls into a short list of well-defined historical exceptions to the First Amendment; obscenity, defamation, fraud, speech that is integral to criminal conduct are examples of unprotected speech.

The point of the above very cursory example is to illustrate that even one of our most sacred liberties, the right to free speech, has some limited exceptions. It is these exceptions, these checks on individual liberty that actually protect everyone’s liberty to live freely, safely and healthfully in our society.

Today, some are questioning whether the government has the right to mandate that people wear masks as a preventative measure against the spread of Covid-19. Some individuals argue that they are not afraid of getting the Covid-19 because they are sure they will recover if they do; they do not believe that the Covid-19 is as severe or deadly as the media portrays it; or the government has no right to infringe upon their right not to wear a mask. These are just a sampling of some of the arguments. However, none of the these or other arguments address how the choice not to wear a mask could impact the health, albeit unknowingly, of someone else.

Have we become a society where individuals only care about something if it directly impacts them? Perhaps in some ways yes we have. Up until recently, for example, most people did not know or care much about Autistic adults. The Daniel Jordan Fiddle Foundation was the first organization, twenty years ago to focus on adult Autism and it has taken nearly two decades and a growing number of the population affected to create the awareness that Autistic children become Autistic adults and that they deserve the respect and opportunities that others have as a matter of human rights. In this example, and many others, as more and more people become affected, more and more people care about an issue. But is that aspect of “human nature” one we are proud of or should we work to change that self-centered perspective of caring only if affects one’s own life?

Further, even if an individual is not directly impacted by something, if the government intervenes with laws or regulations for the protection of other individuals, or society as a whole, is that an infringement of personal liberty? Today, more than ever in our lifetime, we are called to focus outside of our individual bubbles, bursting them to take a look at how other people are impacted by our choices and biases. As our country revolts against longstanding injustices every person is going to be impacted no matter how much one shelters in place. Because of our interconnectivity there is no escaping.

If we are to grow from recent events, we must burst forth from our islands of individual existence because the reality is that technology, media and global events are forcing our individual islands to merge whether one likes it or not. It is no longer a world of Darwinian survival of the fittest because as we have seen, we live today in an interdependent world. In fact, individual liberty has never been unconditional which does not mean we have or should relinquish our individual freedom. Rather, we should consider that the individual’s freedom exists most fervently if we value each other by making choices that strengthen and better society as a whole.

The Daniel Jordan Fiddle Foundation for Adult Autism Shares Its Pioneering Mission On the Global Stage in Beijing,China by Ryan Shindler

The Daniel Jordan Fiddle Foundation for Adult Autism Groundbreaking KEYNOTE Opens New Doors in China

On August 22-23, 2019, The Daniel Jordan Fiddle Foundation attended the International Symposium on Rehabilitation and Advocacy for Autism sponsored by the Ai You Foundation at the Crowne Plaza in Beijing, China as an invited KEYNOTE addressee.

Over the course of two days, this international conference featured lectures on psychosocial support for families with Autism, organizational management of Chinese rehabilitation centers, and- led by renowned behavioral analyst Vicci Tucci, how the Competent Learning model fosters inclusion for Autistic children. Two of our founding Board of Trustees members, Howard and Frederick Fiddle, proudly represented The Daniel Jordan Fiddle Foundation as the only international organization invited to share its trailblazing mission, representing the US Charitable Sector at the Conference.

Howard Fiddle participated on an international panel that discussed capacity building and vital support from the charitable sector. Frederick Fiddle presented a KEYNOTE address on the work of The Daniel Jordan Fiddle Foundation since its inception. This includes the establishment of hundreds of adult Autism programs throughout the United States, educational and public service publications relating to topics focused on adult Autism and most recently the historic establishment of five endowed funds at America’s leading universities, each focused on unique areas that vitally impact adults diagnosed with Autism Spectrum Disorder. Tugging at the heartstrings of the audience, Frederick Fiddle led a moving story of Danny Fiddle, his late son for whom the foundation is named.

Sponsoring the event, the Ai You (AY) Foundation spawned with the then new foundation laws in China in 2004, uses its entrepreneurial staff to push Chinese nonprofits into the 21st century. AY dedicates its efforts to the medical needs of children who need it most, including the Ai You HeKang Rehab Center for children with Autism.

The Daniel Jordan Fiddle Foundation shared its visionary mission of worldwide acceptance of neurodiversity and the need to value all individuals. Starting out in New Jersey, Executive Director Linda Walder expanded the foundation’s outreach to all forms of media worldwide, including USA Today, the New York Times, Traditional Home and Redbook magazines, to name a few. Today she writes in the blog she established entitled, Autism for a Lifetime: Finding Joy in the Journey. The Daniel Jordan Fiddle Foundation shared its innovative and collaborative model that focuses on joint-ventures and partnerships aimed to achieve specific societal change.

The Daniel Jordan Fiddle Foundation assures a global focus on cutting edge research, program development, and public policy in the world of Autism through the strategic implementation of The Daniel Jordan Fiddle Foundation Adult Autism Endowed Funds. Located in the nation’s elite universities, The Daniel Jordan Fiddle Foundation five Adult Autism Endowed Funds each focus on a specific area of adult Autism. The partnership with Yale Medical School, for instance, is the first Fund in the nation dedicated exclusively to support research projects relating to adults living with Autism Spectrum Disorders (ASDs). Helping those with ASD express themselves artistically, Brown University’s Theatre Arts and Performance Studies (TAPS) nurtures both undergraduate and graduate collaboration with the Autism community, fighting stigma and revealing the nuances of neurodiverse living. The Rutgers School of Social Work sends three to four Fellows to work as direct clinicians with family members of autistic adults and develop a web-based resource guide for families to use nationwide. At the University of Miami through The Daniel Jordan Fiddle Foundation Transition and Adult Programs at the Center for Autism and Related Disabilities, model programs focus on job training and attainment, workplace support and social skills development. Yet these efforts would be naught without extensive public policy advocacy in all levels of government. Thanks to our gift of $100,000, fellows the Watts College of Public Services and Community Solutions at Arizona State can develop a comprehensive policy agenda serving the needs of adults with ASD and their loved ones through The Daniel Jordan Fiddle Foundation Center for Public Policy located at First Place in Phoenix, Arizona.

“We blaze trails that aim to inspire the world to embrace the fact that Autism is a lifelong challenge, that neurodiversity is valued as a matter of human rights, and that the public and private sectors have an obligation to create the supports and services necessary for all individuals diagnosed with Autism Spectrum Disorders ASD) to live their best life possible,” said Linda Walder. The opportunity to present this vision not only opened doors to a whole new world but successfully inspired the international and Chinese-based audience to view Autism as a lifelong journey with promising destinations as diverse as those who have been diagnosed. The Daniel Jordan Fiddle Foundation’s person-centered initiatives and programs have already helped countless adults with ASD lead fulfilling lives, and assuredly will for generations to come around the world.

Ryan Schindler is an Autism Advocate in Atlanta,Georgia. He has an MPA from Syracuse, University and specializes in Public Policy. He loves playing board games, watching tv, and singing in a barbershop quartet. Currently Ryan is working on projects for The Daniel Jordan Fiddle Foundation.

Sometimes It Takes A While

via Sometimes It Takes A While

EVERYTHING HAS ITS DAY

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.

 

DONATE NOW to the ONLY ALL-VOLUNTEER national autism organization serving adults and their families: THE DANIEL JORDAN FIDDLE FOUNDATION! Look at our record for 2017…

Before the door closes on 2017, and in preparation for the new tax laws in 2018, it is the perfect time to consider a donation of any amount to the only 501(c)(3), all volunteer-run autism organization in the United States focused exclusively on adult autism and the only organization with FOUR GROUNDBREAKING ENDOWMENT FUNDS at renowned universities: The Daniel Jordan Fiddle Foundation!

According to Merrill Lynch investment advisors:

“Charitable gifts could be worth more if deducted in 2017 instead of 2018. The top marginal tax rate for 2018 would be 37% (down from 39.6%)—some taxpayers who are in the current 39.6% bracket will drop to 35% since that bracket is elongated to cover income up to $600,000 for married taxpayers. Therefore, a charitable deduction could be worth more if made in 2017 rather than 2018. There is a host of complexities, such as phaseouts and caps that can affect any particular taxpayer’s decision. There is no substitute for individualized advice from your tax professional. It is also noted that with the elimination of state and local tax deductions (and even with a $10,000 allowable deduction), some taxpayers may actually use the standard deduction if they have no charitable deductions. As a result, some portion of their charitable deductions in 2018 could be “wasted.”

This past year has been a great year of accomplishment for The Daniel Jordan Fiddle Foundation Adult Autism Research Fund at Yale University led by Dr. Roger Jou who has engaged nearly 400 participants in social groups that will form the basis of innovative research relating the unique social challenges of autistic adults.

The Daniel Jordan Fiddle Foundation Transition and Adult Programs at the University of Miami Center for Autism and Related and Disabilities and the like-named fund that supports employment bootcamps, job coaching and support groups for adults and even social activities that enhance skills vital to employment has launched full-time employment for participants and fosters on-going support to assure success!

The Daniel Jordan Fiddle Foundation Theater and Performing Arts Fund at Brown University has trained over 50 professionals in the acclaimed Miracle Project methodology and successfully completed a filled to capacity summer camp alongside Artists and Scientists as Partners where young adults and adults on the autism spectrum, their peers and Brown students through the magic of theater, dance and music made life-changing memories together!  And this is only year one!!

At the Graduate School of social work at Rutgers, the State University of New Jersey, we recently met with Dean Potter and the four Daniel Jordan Fiddle Foundation Fellows who are working as clinicians with the family members of adults diagnosed with autism as well as putting the finishing touches on a national database to assist the family members of adults as well as professionals, autistic adults, and the community at large in navigating resources and support systems they need during the lifespan journey of of autism.

Finally, The Daniel Jordan Fiddle Foundation Leader in Adult Autism Award, a national honor presented annually at the Autism Society of America Conference, was awarded to Rising Tide Car Wash, a Florida company that employs autistic adults. Rising Tide is a role model for entrepreneurs and businesses across the United States and throughout the world and its great success exemplifies The Daniel Jordan Fiddle Foundation vision to value each person and honor their strengths and talents as they participate in and contribute to community life.

As you see, 2017 was an incredible year of achievement for our all-volunteer-run organization, and we could not have done it without your continuous support during these past 15 years.  We hope you will consider a year-end donation that you can make directly from our homepage at http://www.djfiddlefoundation.org

With our unwavering commitment to all those affected by Autism, and to all of you in our service, our best wishes for a wonderful new year, The Board of Trustees of The Daniel Jordan Fiddle Foundation

 

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?