Dust in the Wind

The following is a commentary by Linda J. Walder, and does not necessarily reflect the viewpoints of others affiliated with The Daniel Jordan Fiddle Foundation.

Many of you are too young to remember the rock group Kansas and their iconic song “Dust in the Wind,” https://www.youtube.com/watch?v=tH2w6Oxx0kQ This song comes to mind in the wake of celebrities, and others in the public eye who due to their careers are in the media spotlight, and who are constantly badgering the public with their personal viewpoints and politics. The egos of these folks are so enormous that they have anointed themselves the “experts” on everything! Many of these people are not well-read, well-versed or well-eduated, but this does not stop them from using their platforms to divide our country.The lyrics of ” Dust in the Wind” are spot on for the message that all of us are simply “dust in the wind,” and that no amount of money, fame or power will change that truth.

How can we progress towards a more utopian world where we all feel valued, and where we all feel that our viewpoints, although differing, will not be berated or stifled? In the world of autism advocacy, we need to first and foremost listen to individuals and their families living with Autism Spectrum Disorder (ASD). Science may guide us and we should learn from what is revealed, but not to the exclusion of the day to day experiences of individuals and their families. Both research and experience are worthy informants and hopefully help to improve people’s lives. However, what is valid today, may not be valid tomorrow. We cannot learn more if we shut our minds to new research and experiences that contravene how we think now.

Those whose egos claim ownership of the truth may be in for a wake up call when their positions are rejected. The realization that we are all “dust in the wind” should be an uplifting thought of empowerment for every person who defies that sort of egotism.  In the end, what will matter is not who blew their horn the loudest, but what blew us away without fanfare or conceit.

 

 

 

Now is the Time. Let YOUR Light Shine!

It is remarkable that in this year marked 2016, within the next 48 hours, 3 of the world’s renowned holidays will begin: Christmas, Hanukkah and Kwanzaa. It is the season of joy, hope and celebration for many, a melancholy time for some, and disdained by a few. Regardless, it is possible to focus on something more inherent than whatever this time of year evokes for you. Now is the Time. Let YOUR Light Shine!

What does this mean? As always, it means what you want it to mean for you. It can mean a smile you give to a stranger you pass on the street. It can mean enjoying beautiful music. It can mean noticing the sunrise or sunset. What inspires your inner light to shine is deeply personal, and powerful. Light is endless when it shines from within and no one can diminish that light unless you permit that. Even then, even if your light ebbs and dwindles, it will not be extinguished in your lifetime.

Think about that. Your light will not be extinguished during your lifetime. That is an astounding thought!

How much your light shines depends, and it depends on you. It does not depend on the opinions, behavior, judgments, assessments or attitude of others. Your light may flicker by the actions of those whose lights are dimmer and want yours to be too, but do not let them have the strength of the wind to blow upon yours because you are the storm. When others display their negativity or boasting in false light that does not enhance their light and diminish yours, it diminishes theirs.

Value your light and do not be afraid to let it shine uniquely. This is your time to shine and that is why you are alive now. It does not matter if you become famous or well-known because that has nothing to do with light, except light that is manufactured.

This is the season to notice the light everywhere and most importantly your own light. May your light shine more brightly than ever in the new year marked 2017.

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.’”

Why Seek Truth? By Linda J. Walder

Hypocrisy is a counterfeit persona; it is a public performance of acting good, but that good is false because it is self-serving. “Goodness” of this kind is deceptive and often succeeds because most of us are so absorbed in our own daily fare that we do not spend much time analyzing the reasons why others act as they do.

I would suggest that there is a very good reason to spend time analyzing why others act as they do. It is a form of truth seeking to spend the time to understand who is genuinely concerned about us and who has other motives. The quest for authenticity is vital in one’s decision-making process. Whether one chooses to be guided by the counsel of one person versus another, how we decide whom we want to be friends with, and why we deem to disengage from relationships with people who do not value us, are some scenarios that are guided by a desire to affiliate with those who have our best interests at heart.

Perhaps there is no time more deserving of this sort of introspection than when an autistic individual transitions from childhood to their adult life. At this time of change for individuals and families it can be very challenging to find the right organizations, professionals, friends and family members who genuinely have the best interest of the autistic individual at heart. Some will act as if they do, but then there are things that happen to make one question their motivations. It is disturbing and eye-opening to discover that a trusted organization, family member or professional is more interested in their own agenda or needs rather than what is best for the autistic adult who is relying upon them.

Those on the spectrum who can speak for themselves, particularly those in the self-advocacy community, question the motives of organizations who use prominent autistics to bolster their status. Parents of adult autistic children often feel let down by agencies and professionals who are supposedly acting on behalf of their family but do not take their child’s unique story into account. There are parents too, who put their own needs or frustrations ahead of what is best for their autistic adult child.

In each of our lives we will face crossroads. Instead of looking at these times of change as frightening and paralyzing, there is another more empowering way to approach this. If one strives to seek authenticity using the tools of one’s intelligence and intuition it can lead to finding organizations, individuals and communities of support.

But how will one know whom to trust? It is a process requiring a recipe composed of introspection and experience. Introspection about one’s own truth at the crossroads and experience through direct or actual and indirect or observational encounters with others.

A first step is to honestly look in the mirror and be truthful with oneself about where one is now and where one wants to be in the future. It is in more concrete terms about creating a personal roadmap. Once one has a grasp of his/her own truth than that will be the guiding force in finding organizations and people who are aligned with one’s truth.

The effort of seeking one’s truth and aligning oneself with supporters who act with authenticity towards us and in the world takes work. It will at times be very difficult because it may mean letting go of people and institutions we relied upon only to discover that they were hypocritical. However this is really not a bad thing because they weren’t truly there for us anyway. When only authentic supporters remain there is less stress, less hurt, less disappointment and more joy in the journey.

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

The Pros of Procrastination

ImageOnly 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 tall stack of paperwork I need to go through for work, and I need to carefully read and review it all, but it is such a big, tall pile and although I love what I do, I cannot bring myself to do it today. However, I am thinking about the contents of the pile and as my thoughts are marinating I am getting more focused on the direction I want to take. This kind of procrastination is really part of the process of defining goals and objectives.  It is a getting ready mode that is necessary for thoughtful analysis and decision making.  Procrastination is on its face a way of avoiding a decision, or could it be a way the mind synthesizes and works through scenarios that will lead to better decision making?

For many people who live with Autism, and their families, there are often difficult and challenging things that others do not have to contend with in the same way. For instance, this week people will be celebrating Easter and Passover, and it is a time when family and friends gather together.  These gatherings are not easy for people living with Autism because of social and sensory impacts and many procrastinate on accepting invitations, not because they do not want to go but because they do not know if they can handle it. In these cases, my suggestion would be to think about why you are stressed out and procrastinating.  Maybe you will come up with a few things that you “fear” will happen if you go to the gathering, and then you can hopefully figure out a strategy to work this through, or even talk it over with the host of the gathering (after all, they invited you so they must care about you!). Procrastinating your decision about whether you will accept the invitation could actually be a good way to get yourself prepared and comfortable with your choice and will also help clarify your situation for the host.

Procrastination has a bad reputation, but is it really deserved?  When we procrastinate we allow time for new and maybe better things to happen. When we procrastinate we get more focused as we race towards the deadline.  And speaking of deadlines, I need to finish preparing my taxes and stop procrastinating!

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

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! 

The Power of Advocacy

At this time of year with election day approaching it seems that everyone is advocating for something. Politicians are advocating their positions on key issues that affect their constituents.  Special interest groups are advocating for the politicians that represent their viewpoints. Business leaders are advocating for candidates that will enhance their prosperity while the underserved are advocating for more attention to their needs.  Opinions run rampant on social media like FACEBOOK and sometimes these opinions run those with opposing viewpoints out of town.

Everywhere one turns, whether tuning into television ( and not only the news show but entertainment shows too espouse political viewpoints) or getting one’s manicure or barbershop crew-cut, people everywhere are advocating their perspectives.  Yes, this is the American way, our first amendment right to free speech, and yes, we Americans hold this near and dear to our hearts and rightfully so!  It is powerful to advocate.

Why is advocacy so powerful?  First, on a primal level, advocacy allows us a vehicle by which to use our brains, formulate an opinion and then passionately share it.  I am not sure the amount of calories burned but perhaps someone has or will do a study as to whether constant advocacy leads to weight loss!  Anyhow, back on topic, it would seem that advocacy is a healthy form of discourse.  However, not always.

A childhood friend of mine was actually threatened and bullied by some other people from our childhood because of his political views that he shared on FACEBOOK.  They even threatened his mother!  This is a sad example of how advocacy can turn ugly and cruel.  There have also been recent instances that I have noticed advocacy envy where advocates who supposedly are working together for a cause, diminish and knit-pick the work that others are doing rather than celebrating the good intentions that create awareness.

In the world of Autism advocacy, many people living with Autism have difficulty with verbal communication (although they find other ways to get their point across for their needs and wants) so they are dependent on their peers who are more verbal, their parents and caregivers and professionals working in the field to express viewpoints.  The Daniel Jordan Fiddle Foundation is extremely proud to have been among the first national Autism organizations and to be the first one focused on adults, to have an Advocates Advisory Board. We have always relied on our Advocates to guide us in our program development and in all else that we do. The Advocates on our Advisory Board all live with the challenges of Autism and some have posted on this blog and others will in the future.  These advocates currently serving as The Daniel Jordan Fiddle Foundation adult self-advocate advisors are: Alex Bond, Stephen Daly, Amy Gravino, Susan Meyer, Jimmy Scancarella and T. Paul Voss. Each of these individuals has had opportunities to represent The Daniel Jordan Fiddle Foundation; for example at: advocacy events; in the media; in pieces they have written for our publications; and social media; and at conferences and round-table think tanks to name a few.

In addition, The Daniel Jordan Fiddle Foundation has proudly partnered with Autism organizations led by self advocates such as GRASP, ASAN and ARI and the programs, initiatives and awareness our partnerships have created are ones we take great pride in, especially because these affiliations and valued collaborations are driven by those who are on the front lines of Autism advocacy.  We are also very proud of the fact that these collaborations are serving the needs of the constituents that these organizations represent.

The power of advocacy is potent.  Even one voice can make a difference as we have often seen through history.  But the power of advocacy, like any other kind of power, must be cherished; and it should be used with careful consideration, respect, tolerance and positivity. Self-advocates should not be engaged as poster mannequins but as valued voices who drive the cause they represent. Groups working to achieve societal change and better lives should not vie against one another to be top-dog but rather support and respectfully disagree while mutually encouraging community engagement on the issues they care about. In these best case scenarios the power of advocacy is at its finest.Image

Don’t Have A Meltdown Over Ice Cream

We have all heard the expression and maybe even read the book, “Don’t Sweat the Small Stuff,” yet sometimes we do or we have an encounter that reminds us.

It was a beautiful, but humid (which in this part of the country is usual) summer evening and we were standing on line for an ice cream cone.  The line was long: actually there were two adjacent long lines, filled with children, teenagers, families, infants in strollers, couples of all ages and pairs of friends, also of all ages. One such pair of friends was standing in line in front of us; they looked to each be around eighty years old, but this is just speculation.  As we waited and my friend and I chattered away the time, during the pauses in our conversation, I could not help but overhear some of the conversation of the women in front of us being that we were standing so close behind them.  One of the women was making remarks about people in line, and it was really obvious because she would look around, scowl and quip to her friend things like, “Look at her in those shorts—who does she think she is?” or she would pass a disapproving glance through the crowd.  Mind you, we were on line for ice cream at an ice cream shack, not a fancy restaurant!  In response to her remarks, her companion would shake her head in agreement or just listen dutifully.

Finally, after about forty-five minutes it was almost our turn to reach the front of the line and place our orders at the counter of the ice cream shack.  Being closer to the front of the line, we could now read the numerous assortment of flavors including one of the evening’s special flavors: “carmel pretzel swirl.” Moments later, it was time for the woman in front of us to order.  The college girl politely asked her, “What can I get you this evening?”  The woman answered, “A cup of carmel pretzel swirl.”  The college girl then politely answered,  “I am sorry but we are out of that flavor, can I get you something else instead?”—there are about thirty other flavors!  And with that, the woman, in the meanest, rudest tone possible, snapped back at the college girl, ” FORGET IT!!!!”, as if it was the college girl’s fault that they were out of the flavor she wanted, and really, as if she had just been given a death sentence!  The two women (including the dutiful one) stomped off of the line, neither one getting an ice cream or even considering getting another flavor.

I was not only in shock by her reaction, but very offended by it and very sympathetic towards the innocent college girl who was just politely doing her job at the busy ice cream counter!  How could that woman act so rudely, and about something that was supposed to be fun and delicious—ICE CREAM?  What was the big deal if they ran out of the flavor she wanted—she had waited almost an hour on line and there were at least thirty other flavors to choose from?  Why could she not just choose another flavor?  Why did she have to treat the college girl with such disdain? Why did she make such a big deal over this and how come she could not recover from her disappointment over something so inconsequential?  All of these questions flooded my mind.

I did not have time to think of any answers to those questions because now it was our turn to order our ice cream treats! I settled on a vanilla/banana soft- serve with hot fudge!  My companion had wanted the mocha chip but they were out of that one too so he settled on a cone filled with a flavor called “Moose Tracks!” Thankfully my companion got it right and did not have a meltdown over ice cream!

As we walked home, enjoying our frozen treats and the simple pleasure of the evening, I looked back at the long line of waiting patrons and could not help but think that they too would soon be cooling down with their icy treats and how that unhappy woman and her dutiful companion were somewhere in the night sweating over the small stuff.