Coping With Grief After an Autism Diagnosis

Grief is natural, but is not permanent

Grief is a natural reaction to an autism diagnosis.
mental illness

Many parents feel overwhelmed with sadness when their child is diagnosed with autism. Often, that grief is connected with a sense of loss. While their child, of course, is still a part of their lives, some parents feel that they have lost the child they expected or the child they thought they had. Others are saddened by the realization that their child with autism will almost certainly live their entire lives with a disability. Still, others are grieved by the thought they will not be able to give their spouse or parents the gift of a "perfect" child or grandchild.

While grief is a natural reaction for many parents, psychologists Cindy Ariel and Robert Naseef provide strategies for managing and even overcoming the pain.

Dream New Dreams and Celebrate New Joys

There are many losses through life and seen in a larger perspective, each loss adds meaning and depth to our lives. We all feel grief at various points in our lives but that does not minimize our times of happiness and joy. In fact, grief magnifies joy because happiness is so much sweeter after experiencing sadness.

As we come to accept where our children are actually at and who they really are, we dream new dreams for them and for our families and these new dreams are much more likely to be based upon reality and therefore are more likely to be attainable.

When we once dreamed about having philosophical discussions with our child, we may now simply long to hear them call us mommy or daddy or say "I love you." Our dreams may have to give up on hearing our child talk altogether and focus instead on just having her look into our eyes and smile. When such new goals are reached, it is joyful indeed. This is not to say that sometimes we don’t wish or long for the child we imagined. When we focus there, we may always feel sadness.

Dreaming new dreams and rejoicing in new goals helps us feel happier with the child we actually have. Nobody wants any hardship to befall their children. We may feel disappointment, guilt, and sadness when our child has a challenge that will make life, which is already difficult, even more so. We get through the adversity and we love our children even as we grieve and we celebrate their unique lives and the time we are given to be together.

Give Yourself Time to Grieve, Heal, and Accept

Grief may come in waves and it may take you places you never expected to go. It is a normal and natural process, which comes and goes. You may be able to take comfort, however, in the reality that you are not alone: your feelings which run the gamut from fear to guilt, to anger, and depression are actually the symptoms of a broken heart. So go ahead and look at your grief.

Observe your thoughts and feelings. Accept them and be kind to yourself about having them. It doesn’t help to pretend to be positive when underneath you may be lonely, afraid, or sad. You don’t have to lie to yourself. You can grieve. You can complain. You can mourn. This helps you to go on, make the best of the situation, and enjoy life.

It is natural to wonder about what might have been. Your longing for the healthy child of your dreams or a typical life for you and your family may endure. You have to learn to live with that yearning, and you can do that, but you don’t have to lie to yourself about how hard this can be.

Once you have given yourself permission to accept your feelings, try to accept yourself as you are—a kind and loving parent doing your best with your child who is undoubtedly doing his or her best under trying conditions. 

Finally, accepting our pain and ourselves leads to accepting and enjoying our child and our family. This is the gateway to love and happiness. That deep connection that a parent feels with a newborn, or a child’s first word or first steps can be felt at any moment when we are truly aware and attuned to our child. That deep connection is alive inside you. As you rekindle it, you can actually experience very deep happiness. That’s not to say that your life will be easy. But it can be happy and fulfilling.

2 Sources
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  1. Fernańdez-Alcántara M, García-Caro MP, Pérez-Marfil MN, Hueso-Montoro C, Laynez-Rubio C, Cruz-Quintana F. Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (Asd). Research in Developmental Disabilities. 2016;55:312-321. doi: 10.1016/j.ridd.2016.05.007

  2. Bravo-Benítez J, Pérez-Marfil MN, Román-Alegre B, Cruz-Quintana F. Grief experiences in family caregivers of children with autism spectrum disorder(Asd). IJERPH. 2019;16(23):4821. doi: 10.3390/ijerph16234821

Additional Reading
  • Interview with Drs. Robert Naseef and Cindy Ariel, 2016

By Lisa Jo Rudy
Lisa Jo Rudy, MDiv, is a writer, advocate, author, and consultant specializing in the field of autism.