The Caregiver’s Journey: Autism Spectrum Disorder
Cierra Chmiliar | September 30, 2020

A caregiver is traditionally defined as a “member or paid helper who regularly looks after a child or a sick, elderly, or disabled person”. I would expand this definition to include anyone who is involved in the care of a person in need. This includes parents, siblings, relatives, teachers, daycare staff, and any other people or professionals involved in that person’s life. I myself am a caregiver; I am a sibling of someone that is on the spectrum, I used to work in the school system with children with developmental disorders (including autism), and I now work professionally with children with autism.

I have often found that in most literature on autism, the focus is on the person with autism and their journey through the diagnosis process, as well as through their life stages. I have come to believe it is equally important to also focus on the caregiver(s) journey. A person on the spectrum often needs care throughout their lifetime, which often has a huge impact on the family or the caregiver(s)- financially, emotionally, and practically. Therefore, it is important for us, as the carers, to be aware of our own journeys, as we help guide our children with autism. We often go through several stages in our journeys as caregivers:

Stage 1) Realizing Something is Not Quite Right

This may a “gut feeling” that you hold as a parent, a teacher, or another person in that child’s life. This may be seeing missed milestones; for example, parents may begin to wonder if something is wrong when their child won’t answer to their name, if they don’t make eye contact, or they do not make any single word communications by the time most children begin talking. This may be seeing “odd” behaviors that does not quite fit with your vision of what your child should be. We might begin to seek out more information, learn about autism, consult a doctor, and may seek out a diagnosis.

Stage 2) Feelings of Futility:

For most people, this stage may happen in the diagnosis process, or post-diagnosis. As parents, teachers, or relatives, we will likely feel some feelings of futility, sadness, and/or frustration. We may think that this was not the brain we wanted for our child, this is not what we envisioned for ourselves, our families, or our classrooms, and we may be scared for what the future may hold.

These feelings are okay; they are normal and natural. Just because we feel these feelings does not mean we don’t love our child with autism. In fact, we wouldn’t be feeling so strongly, if we didn’t care about them so much. It is important to allow ourselves to feel these feelings, because if we don’t, we risk getting stuck in denial, resentment, blame, anger, and even depression.

Stage 3) Grieving Process:

Society often tells us that we can only grieve deaths; this is not the case. We can grieve dreams, ideals, and our old expectations for ourselves, our children, and our families. In this stage, we go through a grieving process and eventually say goodbye to feelings of denial, anger, anger, blame, and resentment.

It is important to note that these stages are not linear. We often go back and forth in between the stages, as we and the child on the spectrum move through different life stages. As a sibling of a child (now technically an adult) on the spectrum, I have gone through several grieving processes regarding my sister. As a teen, I grieved not having a “normal” sister that I could talk to about boys, or steal clothes from. Looking into our future, I have concerns around supporting her (both emotionally and financially) as she grows older. This is something that I will likely grieve many times in my lifetime, each time a little bit different.

Stage 4) Acceptance:

In this stage, we accept where we and the child are at, at this very moment of time. For me, my relationship with my sister will never be “normal,” but that’s okay. Our relationship is unique, and we have a sisterly bond, in our own way. It may not be typical, but it is special to me. This stage also includes facing our own limitations; we need to continually learn about ourselves and recognize where we are in our own journey. Only then will we be able to best serve our child on the spectrum, whether we be their parents, relatives, teachers, or other important people in their lives.

Sources: Kübler-Ross Stages of Grief, Neufeld Institute

Cierra Chmiliar, M.C., Registered Psychologist
Speaker for the 2020 November Online Children’s Mental Health Conference

Join us for our upcoming annual Children’s Mental Health Conference via online format airing November 20-22, 2020!
https://instituteofchildpsychologyconference.com/