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not mean that treatments and medical needs of autistic individuals will be unavailable or that insurance rights will be repealed.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.

 

 

 

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.’”

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.