It has been 13 years since my son Richie was diagnosed with Autism. When he was two years old, I received the news many parents in my same situation may have long suspected but dreaded. When you first hear the words, “Your child has autism,” it is a life-changing moment. It’s important to understand that the grief cycle that comes with the autism diagnosis is not a process. A process, by definition, is a series of steps that lead to an end. Please note that my son’s diagnosis is NOT all gloom and doom – it certainly isn’t. I get to experience many moments of joy and happiness that are unmatched to those of parents of children with no disabilities. I write this in hopes that friends, family members, and other members of our society read this and express sensitivity to all parents of children with autism and essentially all special needs parents – because after all, the feelings experienced are almost universal.
Please Don’t Downplay My Pain
My son Richie is this phenomenal young man who is fifteen-years-old and has autism. This isn’t news. Everyone I know is aware of this fact and for the most part is very sensitive about his needs, my feelings, and our family life. However, occasionally, I receive a “roll of the eyes” or “okay – he has autism” retorted by – of all people – women who are very close to me. This happens during the very few times I’ve had a teary, sad moment or what I call a mini-breakdown. These family members have made me feel as though my emotional breakdowns are unnecessary or some ploy for attention. They assume that I should be over the "autism diagnosis" and all better. They don't understand that for me, the cycle of grief is ongoing, it doesn't just stop. They don’t understand what I’m experiencing and I hope they never do.
The grief cycle of an autism parent or many special needs parents is unique. Please note I’m not suggesting that this is in any way worse than or the same as the loss of a child. I know how lucky I am to have my son in my life.
The Grief Cycle Stages of an Autism Diagnosis and Beyond
While I wrote the following stages in this sequence, there is no systematic order for how these emotions are experienced. Each parent may experience some, most or all of these stages at different times.
Denial
It’s important to note that this is not the same as holding on to hope that leads to an alternative path. This is the absolute disassociation of an undeniable diagnosis. I don’t recall ever going through this part of the cycle because I had suspected Richie had autism long before his official diagnosis. I had to argue with everyone from his father to his doctor about getting him diagnosed. However, there are cases where symptoms can be so slight, they are almost unnoticed by most. Autism is well-known for its challenging road and sadly, it is also riddled with many negative stigmas. Because of this, many parents have a hard time accepting this diagnosis. Statistics have shown that fathers of sons are more likely to experience this phase for longer periods of time than mothers.
Anger and Frustration
It’s common to ask oneself, “Why me? Why of all members of my family, friends, and people around me did I get dealt this hand of cards? I’m not a bad person. I know at least five other people who have done horrible and unspeakable things – why not them?” During this phase, many parents begin to examine their lives, the lives of others and how this could possibly happen to them. They may begin to question their faith. Often times, they assign blame and channel their anger towards their doctors, spouse, other family members, society, the government, and god. Science currently provides no true definitive answer to why autism affects one person and not another. This makes acceptance and finding peace with an unexpected and different life so much harder. I remember going through this phase for a short time. The few weeks following Richie’s diagnosis, I couldn’t talk objectively to anyone about him having autism. I was angry with anything anyone had to say. If someone said they suspected he had autism, my reply was, “Then why didn’t you say something?” If someone said they didn’t think the diagnosis was correct, I would retort, “Oh so now you’re the expert?” I wasn’t angry with them. And I’m so grateful they understood that my anger had nothing to do with them! I sometimes still find myself in this phase, although not often. It's usually during the real tough times when I feel defeated by challenging behavior, let down by the system, or just physically and mentally exhausted. It never lasts long and it is infrequent, but I would be lying if I said I haven't experienced it since Richie's diagnosis.
Guilt
Not knowing the cause for autism or other diagnosis’ will inevitably lead parents to blaming themselves – especially if there is another family member (close or distant) with the same or similar diagnosis. Guilt creeps up on me often, more often than I care to admit and I suspect some other moms and dads may experience the same. At first, I felt guilty for my poor dieting during my pregnancy. I ate all those Hot Tamales I was craving, maybe that was it. Does a gene run through my family? After all, I do have a cousin with Asperger’s Syndrome. Maybe I didn’t do enough to get him more therapy. My son was born into a broke family who couldn't and still can't afford forty hours a week of ABA therapy. From time to time, I do ask myself if I’m doing all I can for Richie. I have wondered over the years how many times my son was punished for exhibiting behaviors he could not help. How many times did he feel excluded, mistreated or unwanted? How many times was he unable to communicate a basic need? For me, this phase is one of the worst ones of all and it still haunts me often.
Sadness and Depression
This is another phase that rears its ugly head more times than we expect. Upon diagnosis, the road is filled with a fearful new life with unknown possibilities, but we tend to fixate on what might be the impossible. There are so many moments when we feel overwhelmed and it seems the struggle is without end. Sadness usually strikes us when we are reminded of the things we may not get to experience as parents. Not hearing the sound of my son’s voice or seeing him participate in things as an independent young man are a couple of the things that sadden me from time to time. The loss of sleep, the endless battle for services, feelings of isolation, dealing with new challenging behaviors or old ones that resurface, the lack of support, and a trillion other things trigger our sadness which can also lead to depression. Sometimes, we don’t even realize we’re depressed. It’s important for us to be in tune with our bodies (mental, emotional and physical health). My husband can always tell when I’m not quite myself, one of my “tells” is my body’s need for sleep. I try to snap myself out of it with exercise, sharing my pain with my husband and my best friend and writing. It's important to admit when you need support from people outside your family. Support groups, therapists, and family counseling are all great options that will help with healing.
Acceptance
Understanding that my son is more than his diagnosis taught me that there is a place in the world for him. I learned to celebrate different things and to celebrate things differently. I learned to set small goals, not just for my son, but for myself as well. I learned it’s okay to be a little selfish and treat myself. In fact, it’s important to do this so I can find balance with my health and my personal life. Yes, I have a life separate from being a special needs parent and it’s not only okay, it’s essential.
I hope that when you meet a parent of a son or daughter with autism, that you please have patience with them. You will never know what phase of the cycle they’re in. The puzzling truth is that as parents, we don’t know what phase we’ll be in next either. There are moments when I forget that my son has autism. Then I see him play alongside kids his age and I’m reminded of his differences. Since Richie was four-years-old (and every other year since then) I tried to get him involved in sports, but he wanted nothing to do with it at the time. We go to his brother’s games all the time and I wish we would be going to one of Richie’s games to cheer him on. I think to myself, maybe one day. Just recently it dawned on me that my son is almost sixteen-years-old and he won’t be bugging me to drive my car or asking me to buy him a new one! He won’t be trying to sneak some pretty girl into his room or lie to me about where he and his buddies were hanging out. It’s things like these that cross my mind once in a while, but it’s a silent sadness that only other special needs parents can understand.
I hope that when you meet a parent of a son or daughter with autism, that you please have patience with them. You will never know what phase of the cycle they’re in. The puzzling truth is that as parents, we don’t know what phase we’ll be in next either. There are moments when I forget that my son has autism. Then I see him play alongside kids his age and I’m reminded of his differences. Since Richie was four-years-old (and every other year since then) I tried to get him involved in sports, but he wanted nothing to do with it at the time. We go to his brother’s games all the time and I wish we would be going to one of Richie’s games to cheer him on. I think to myself, maybe one day. Just recently it dawned on me that my son is almost sixteen-years-old and he won’t be bugging me to drive my car or asking me to buy him a new one! He won’t be trying to sneak some pretty girl into his room or lie to me about where he and his buddies were hanging out. It’s things like these that cross my mind once in a while, but it’s a silent sadness that only other special needs parents can understand.
Joy and Happiness
I added this extra part of our lives because although it is not a representation of grief, it must be mentioned that our lives are not just filled with grief. I mentioned earlier that there are moments of joy and happiness that only special needs parents can only understand. The grief cycle we experience is a reality for many of us, but in our lives as special needs parents, we have experiences of unbelievable love, admiration, and success. We relish in the milestones our kids reach. I remember the day I found out Richie learned to ride a two-wheel bike! I never thought it could happen - and it did! We celebrate the goals our kids meet. I reward Richie with each IEP goal he meets successfully. What about the surprises we didn't expect? Richie is learning language, slowly but surely. Our family is amazed by each new word and request he makes appropriately. The smiles, the silly faces, and a trillion other things that happen from time to time. These are moments of joy and true happiness.
The life of an autism parent comes with hardship, love, heartbreak, unique celebrations, challenges, and amazing triumphs. As often as we deal with the challenges we face, we also have the joy and memorable experiences we get to enjoy. We are strong, resourceful and resilient people, but we need the support, friendship, and understanding of our family, friends, and community. If we have this, we can lead healthier and happier lives.
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