A parent’s plea I received some years ago wrung my heart. I haven’t forgotten his poignant and starkly stated concerns which, in the face of the Covid-19 pandemic and the aftermath that will come when it subsides, are more urgent and pervasive than ever. He wrote: 

I am a single father of a child with multiple neurological and physical challenges. We have so many problems, life-and-death issues. When our leaders and those who make health and education policy are not considering what our children are going through, where will our help come from?

When leaders choose to disregard the needs of our children and the laws protecting them, they choose to disadvantage them, and by doing so, choose to do wrong. It’s that simple.

Fortunately, the answer is simple too: our help will come from those who choose to do right. In this lies great strength, because those who want to do right are far greater in number and are present at every level, including leadership positions. Many are in closer proximity to us than the nay-saying leaders.

In this lies great strength, because those who want to do right are far greater in number and are present at every level, including leadership positions. Many are in closer proximity to us than the nay-saying leaders.

It was true for me as for most parents, autism advocates and self-advocates, that through my years of raising an autistic child, the higher-ups such as the superintendent of our school district, the state superintendents of public instruction and public health, and the federal Secretaries of Education or Health weren’t the ones interacting daily, hourly with my son. His successes came through the efforts of dozens of teachers, doctors, nurses, paraeducators, therapists, administrators, and support staff right down to the school secretaries, bus drivers, medical technicians and receptionists.

These devoted front-liners chose to see the potential in my child, chose to see value in him, chose to challenge themselves to understand, craft strategies, perspectives and paths to learning that brought out the best in him. They had the law behind them, yes, but I saw their work day in and day out. They chose to do right by their autistic students and patients (and all children with disabilities) because they wanted to, and they would have even if the law didn’t say they had to. And when it was necessary, both they and I challenged the laws, the rules, and the people in charge. I did it with a combination of the support of my son’s front-line educators and clinicians, and with reasoned, fact-based demands.

When leaders fail us, our help will come from each other, and from within ourselves. Find your people, your “tribe,” and consider taking some of these steps:  

  1. Stay close. Now more than ever, we are seeing that proximity in the internet age means we can be physically distant but close at the same time we are spreading our wings, our words, our cause and our influence. Proof of the power of this proximity is that the question I’m answering here came to me from the opposite side of the world, an ocean and three continents away.
  1. Allow yourself to grieve any hatred, bigotry, and ineptitude going on around us. Let yourself work through the five stages of grief, talk it out with others you trust. You’ll be better able to rise to positivity, motivation and resilience if you do.
  1. Don’t allow yourself to become overwhelmed with the enormity of what we’re facing. Whatever the first step is, take it. Then the next, and the next, and the next. Adopt this mantra: increments, not earthquakes.
  1. Make yourself visible and heard where perhaps before you weren’t. Others have to know we’re here before they can help us.
  1. Deal always in hard facts. Not assumptions, not guesses, not spin, not falsehood and twisted logic. Knowledge is power. When you have the knowledge, you have the power.
  1. Focus on what’s doable and winnable. Know your local, state and federal laws so that you don’t waste time fighting for something that isn’t available or isn’t indicated by your child’s situation.
  1. Recognize when systems or people have set you or your child(ren) up to fail, call it out, seek out others who are being similarly abused, unite, speak out.
  1. Do not stoop to the level of leaders or others who engage in name-calling and other detestable speech or images. Never has it been more important to provide our children with consistent modeling of integrity, respect, equanimity and broad perspective.
  1. There are numerous ways to make a positive impact for our kids and in your community even if you can’t leave your home to do it. Be a grant writer, web designer, editor, proofreader, foreign language translator, online tutor or mentor, online or email buddy for a student, soldier or senior citizen. Offer to record stories or books for emerging, struggling or visually impaired readers.
  1. Keep a (respectful) sense of humor. Don’t let the baddies rob you of the sanity-saving joy of laughter.
  1. Self-care—it’s how we stave off burnout. In all you’re doing for your child and others, do something for yourself. I like to tell myself to “go outside”—physically, spiritually, artistically, intellectually, socially. “If you put a small value on yourself, rest assured that the world will not raise your price” (Author unknown). Invest in yourself, the better to reap richer dividends for your own well-being, your child and community.
  1. Remember that all leadership is temporary. Leaders leave or topple for many reasons—elections, health reasons, more attractive job offers, threat of exposure of wrongdoing, and the generic “to pursue other opportunities” and “to spend more time with family.” Being held accountable is more than some leaders can survive. A leader can’t be a leader without followers.
  1. And carry with you always the oft-quoted wisdom of anthropologist Margaret Mead: Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it’s the only thing that ever has.


© 2016, 2020 Ellen Notbohm www.ellennotbohm.com   

Excerpted from Autism in Lockdown (2020, Future Horizons).