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?

 

 

 

Armchair Critics Feast Upon Gossip Rather Than Standing Up For Change

At times in each of our lives, we are faced with the question, “to do or wait for someone else to do?” I would also add to that question this way, “to do or wait for someone else to do, but in the mean time whine and complain, write snarky comments in social media and spread gossip?” This question has been crossing my mind frequently lately because of worldwide events, autism-related issues, local occurrences at large, and the way I observe people reacting to them. Some of the brouhaha centers on real events that get distorted like in the old child’s game of telephone where gossip is passed on and on embellished along the way from one person to the next until the truth is disconnected. Other news is completely fake or made-up and meant to stir- up certain specified people or groups; also reminiscent of childhood behavior, where one child makes up a lie and spreads it maliciously while the intended recipient(s) gobble it up.

Whether gossip or fake news, there are those who spread it and devour it, often behind a computer screen or in texts. This indirect method works great for the armchair critic who can feast upon the “tasty” morsels that they read or learn about from their “sources.” These folks are more brazen when shielded behind a communication device. For instance, I have seen this kind of behavior on Facebook when someone in the autism community digs into another person with fury rather than facts. The worst of this is when the insults become personal; another example of childish behavior that we as adults supposedly have learned is not acceptable.

Armchair critics can be effective in raising points or questioning things but their methods do little or nothing to change what they are complaining about. Instead they vividly opine but leave the heavy lifting of change-making for others. To do the heavy lifting of change-making it takes more than just ideas: it takes courage; persistence; and time. It also takes selflessness, and by that I mean doing something that may not directly benefit you. There are people who do this and inspire us, everyday heroes and heroines who change the world.  It is easy to criticize  and as the saying goes “words are cheap,” but to add real value to a cause, even the tiniest action can make a big impact.

Personally, I am honored to know and work with many outstanding advocates in the autism community. These individuals do not get tangled in the web of gossip because they are focusing on projects and advocacy that they are passionate; they are changing lives and opening doors for others. They realize that criticism alone does little to change society. They realize that tearing others down does not build a community up. They realize that there are many ways to look at the same issue, and they show respect for others even when they disagree with them.

It is my hope that as adults we start to do a better a job in raising our children to be  concerned about the world they are inheriting rather than just becoming successful  themselves. We must teach by example that armchair or bystander activism is not enough. You have not done a notable job as a parent if you merely raise a child that looks good in Facebook posts and seems to have it all. The word “seems” is important here. That same child may be a gossip using tactics like armchair bullying or spreading rumors. That same child may act entitled, in the “little things” like not sending appreciative thank you notes to having common courtesy for all people, not only those who can benefit them. Indeed there are many younger individuals who actively change the world because they care about more than building up their resumes, but too many do so to enhance their own appearance. It is up to parents and other adults in the lives of our children to model kind and respectful discourse and to demonstrate through our behavior that actions based upon knowledge not gossip speak louder than words.

The opinions expressed in this BLOG are solely the opinions of Linda J. Walder and do not reflect the opinions of The Daniel Jordan Fiddle Foundation or those affiliated with it.

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.

 

 

 

Inaugurating A New Beginning

Thoughts on What We Must Do to Educate and Inform the Trump Administration about Autism Spectrum Disorder by Linda J. Walder, Founder and Executive Director of The Daniel Jordan Fiddle Foundation for Adult Autism

Today, January 20, 2017 was an historic new beginning for all Americans, and the world, as Donald J. Trump became the 45th President of the United States of America.What does this mean for individuals and families living with Autism Spectrum Disorder (ASD)? It is too early to know with certainty what will happen in the next four years, but based upon what we know so far, I offer these predictions and thoughts that hopefully inspire discussion and action:

  1. Donald Trump appears to be a devoted father and has very close relationships with all of his children. It would seem that he would also value the families of all Americans, and that he would recognize and address the challenges that many face, including those of individuals and families living with ASD;
  2. Donald Trump does not appear to know a great deal about ASD but that does not mean he does not want to learn about it, and how it affects individuals and families. It is our job as members of the community directly involved with ASD, as advocates, family members, scientists and professionals to educate the President and his administration about the needs and concerns of those affected by ASD;
  3. Donald Trump’s choice to lead the Department of Education seems to not embrace or understand how vital federal laws like IDEA are to our students challenged by ASD and that this is a law that enables families assurances that no matter where they live in the United States that their child will receive the best education possible commensurate with their needs.  By leaving this to the states to decide, it puts families in the position of having to move and uproot their lives to states that are more accepting of the IDEA,  and this is onerous on families.  Again, we must educate the Trump administration about protecting these rights in all states;
  4. Although Donald Trump has pledged to repeal and replace Obama Care this does not mean that treatments and medical needs of autistic individuals will be unavailable or that insurance rights will be repealed.  It has and is already up to each state to accept the federal right to receive  insurance coverage on behavioral therapies and other medical needs and that should not change in the Trump administration and families should still be able to save for medical expenses in Health Savings Accounts;
  5. The impact or lack of impact of vaccines on autism has been brought up by candidate Trump and other advocacy groups lately and will most likely be a renewed topic of inquiry and discussion in  the new administration.  Although the CDC’s current position is that there is no connection between vaccinations and autism, I do not see any harm in revisiting the inquiries on this topic while at the same time recommending to parents to pursue a safe vaccination schedule  with their child’s doctors;
  6. The lifelong needs of individuals diagnosed with ASD affect directly over a million Americans, and our entire society at large.  We need the United States government to continue to support the development of housing, employment, medical care, educational and recreational options for the diversely challenged population diagnosed with ASD and President Trump must be made aware of the hopes, challenges and needs of these individuals and families.

We should not look at today’s inauguration of a new President as a negative that will revoke the gains we have made or foreclose future ones.  Rather, we should further solidify our resolve that all people diagnosed with ASD are entitled to be valued and supported as needed throughout their lives.  We do this as an autism community and community at large through advocacy, educating our new leaders, and by highlighting and publicizing positive examples that put a spotlight on how we successfully address the challenges we face to achieve the best lives possible for all. Now is not the time for despondency, rather we must roll up our sleeves and get to work with steadfast hope that our effective enlightenment of the Trump administration will lead to better days ahead.

 

 

 

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.

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

Begin Again…Today!

Begin again…today!  What a freeing and invigorating thought that should be a morning mental mantra, but is it easier said than done? At this time of year as children head back to school, adults shed their summer clothes replacing them with business attire and full agendas, and Mother Nature shifts the season, life can seem as if    daily routines and challenges leave no room for personal choice. We have a lot to do and a lot of people telling us what needs to be done. How do we break free from the pattern of being that feels tirelessly restrictive?

Recently I was in a near fatal car crash on the Atlantic City Expressway. I was a passenger in a car that was in the right-hand lane going the speed limit.  Suddenly, and without warning, a car bolted from the median of the highway directly aimed at us, crashed into our car, sending our vehicle down a ravine into a tree. After the pounding force and cacophonous clatter of metal there was clear silence. As I sat in this silence, airbags blocking me from the shattered windshield, I felt strangely washed in calm.  I had survived and so had the driver of the car I was in. That was all that mattered. We had survived, and G-d had given us a chance in a very dramatic and unforeseen moment to begin again.

Rabbi Laura Geller, in an excerpt I read today, writes about Rosh HaShanah and the meaning of this season’s Jewish holiday that celebrates the anniversary of the creation of the world, “Your book of life doesn’t begin on Rosh HaShanah…it began when you were born…and the message of Rosh HaShanah is that everything can be made new again, that much of your book is written every day—by the choices you make.” If one believes that at birth one’s book of life is already written and sealed, Geller says that “you get to edit it, decide what parts to emphasize and remember, and maybe even which parts you want to leave behind. Shanah Tova means both a good year, and a good change. Today you can change the rest of your life. It is never too late.” I believe this message is universal and resounds in every faith.

Begin again…today! It is a simple and stunning thought. Life presents each of us with many obstacles and challenges and so many unexpected twists and turns. One’s life can change in the flash of a minute, or can wear one down in a slow, painful grind.  We often can control nothing about our lives except one vital and critical thing that is perhaps greater than anything that can be thrown at us—it is our power of choice. We can choose to begin again, to keep marching, to keep fighting the good fight, and even more, we can choose to live the life we have with the knowledge that is right in front of us taught by the mother of all mothers, Mother Nature…after the storm there will be calm, after the rain the sun will shine, after disaster there will be rejuvenation. Begin Again…today!

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