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!

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?

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.

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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?