A Different Kind of Grief

Dania Jekel, Executive Director, and Sonia Janks, Contributing Editor, with assistance from Nomi Kaim
Blog Post

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I want to take a moment to wish everyone a Happy New Year. I’m sure we all share a fervent wish this year will be easier than the last, and we can begin to heal from the difficulty, trauma, and loss we have experienced at the hands of this pandemic. As AANE begins its 25th year as an organization, we hope we can celebrate this anniversary along with improved global health, fewer restrictions, and a return to some of the elements of our lives we have been missing.

In these continued days of isolation, I want to recommend a series on Hulu called Everything’s Gonna Be Okay. If you like a quirky series with lots of neurodiversity, be sure to check it out. (By the way, it even includes a friend and member of our AANE community from California, Lilian Carrier, as the autistic girlfriend of the main character.)

The series opens with the death of the father and the responses to his death by his two daughters, one of whom has autism. This character is played beautifully by Kayla Cromer, the first actor openly on the autism spectrum to play an autistic character in a leading role for television. Watching this series reminded me of all the grief we experienced in 2020, and how universal and varied grief can be. Of course we experience grief with the loss of someone or a pet we love, but there are other kinds of grief experienced by people on the spectrum, which are important to acknowledge.

  • There can be grief which comes when one feels one has not lived up to expectations— either one’s own expectations, or the expectations of family or society. For some, this can be a debilitating feeling, causing low self-esteem. I have seen this sorrow and grief turn inward to significant depression, and turned outward in anger, and sometimes envy of others who seem to have fulfilled their dreams and reached their goals easily.
  • There is grief that comes when you are on the spectrum, but don’t want to be autistic. The struggles, bullying, and alienation people on the spectrum often feel living in a world made for neurotypical people sometimes makes them want to be neurotypical themselves. They may think a neurotypical life would be easier: there would be less exclusion, easier friendships, and possibly romance. Sadly, our world makes it difficult for those who are neurodivergent to embrace who they are, and they often view themselves as broken and needing to be fixed or changed. We wish no person on the spectrum would mourn for who they are because dealing with this grief can bring a life of unhappiness.
  • For some, there is grief for the continued destruction of nature, animals, and the environment. For some on the spectrum, this seems to be a grief which can be intense and cause a great deal of pain. The inability to understand fellow human beings and why they continue actions that destroy the earth can be all consuming and lead to overwhelming grief.

Moving Out of Grief
I recognize that this is a somber topic, but one that I feel is necessary to discuss. No matter who you are, if you are experiencing any type of grief that feels overwhelming, find the support you need or a therapist to help. Also remember how important it is not to make assumptions about what someone should or shouldn’t feel.

One of the keys to working through the types of grief I have just mentioned is self-acceptance: understanding yourself and your unique qualities, finding a life which suits who you are and has meaning, and taking pride in all of your achievements. If you grieve for the environment, channeling that passion can help you take constructive action to help. Recognize that even small efforts can make a big difference. If you have a loved one who struggles with any of this grief, let go of any judgement you may hold, recognize their talents, celebrate their successes, and support them in their efforts to forge their own path.

I am encouraged by shows like Everything’s Gonna Be Okay. It not only provides a positive portrayal of someone on the spectrum who is self-assured and embraces her identity, but demonstrates the skills and talent of actors on the spectrum. I believe with this type of education and awareness, and with the advocacy of many in the autism community, our society can move closer to respecting and accepting everyone as equally valuable, no matter the neurology, ability, or any other factor. This may lighten some of the grief so many are experiencing and shift our world more towards joy.

I hope 2021 brings us a bit closer to that goal.