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Written By Nicola Killops
When my son James was diagnosed with autism 12 years ago, my life changed forever. I’m often asked for advice by parents of newly-diagnosed children with autism. The diagnosis can be intimidating, and it’s natural for parents to feel lost and uncertain of what to do. I don’t have all the answers, but I remember the panic, fear, denial, and distress I felt at the time.
I’ve tried to find the words to help parents of newly diagnosed autistic children who are no doubt dealing with genuine grief. It is an emotion that arises not just when someone we love passes away, but also when there is a loss of expectations, hopes, and dreams.
When a parent receives the news that their child has been diagnosed with autism, it can be a tough and heartbreaking moment. There is a deep sense of grief that comes with this diagnosis, as it often changes the life pathways of the child and the entire family. Parents may grieve the loss of the life they thought their child would have and the dreams they had for them. They may become overwhelmed by the challenges and responsibilities that come with raising a child with autism, including finding therapies and treatments that will help them succeed. Additionally, a feeling of isolation and helplessness can come with this diagnosis, leading to profound sadness and grief. These emotions can be complicated to process and understand, making it important for parents to seek support from other families and healthcare professionals.
In this blog, I will explore the five stages of grief, how to cope with them, and strategies for accepting your child’s autism diagnosis and moving forward positively and productively.
Getting An Autism Diagnosis
Autism cannot be diagnosed through scans or blood tests. Instead, when a child’s behavior suggests they may be autistic, professionals will step in and use a selection of diagnostic evaluations and screening techniques to determine if the child meets the requirements.
The American Academy of Pediatrics (AAP) suggests that pediatricians routinely evaluate children between 18 months and two years old for signs of autism spectrum disorder (ASD) during well visits. For families with a history of autism, it’s crucial to keep a closer eye on their little one’s progress. If developmental screening questionnaires raise any flags, the child may be referred for a more in-depth assessment.
Signs that could suggest the presence of ASD include:
- Delayed speech and communication
- Not responding to one’s name being called, yet having no hearing issues
- Difficulties when the routine changes
- Avoiding eye contact
- Shying away from physical contact
- Difficulty with social interaction.
The truth is that an autism diagnosis doesn’t come out of nowhere. I knew that my son was different, and I read a lot of articles online. So, I suspected autism. However, it didn’t make it easier when I saw it on paper. But, I have learned that applying a ‘label’ is not a tragedy. On the contrary, knowing what you are dealing with empowers you to learn more and puts you in a position to support and understand your child and educate others.
Why grieving is normal
Grief is a natural reaction to the news of an autism diagnosis. And it is okay to feel this way. Many parents feel a sense of loss, guilt, and sadness when their child is diagnosed with autism; these feelings are normal and expected. However, it is crucial to acknowledge these feelings and to take the time to process them.
What are the Five Stages of Grief?
The five stages of grief model the emotional process individuals go through in response to a traumatic event. These stages are denial, anger, bargaining, depression, and acceptance. Not everyone goes through these stages in the same order, and some may cycle through them multiple times. It also may take some people a lot longer to experience the stages. Grief counseling is extremely valuable and goes a long way toward helping you through.
Denial is the first stage of grief. It is a defense mechanism that helps us to cope with the situation. In this stage, you may feel numb or overwhelmed by the news and struggle to process it or accept it as reality.
How to cope with denial
When discovering their child’s autism diagnosis, some parents feel shocked. In contrast, others react in disbelief – feeling like there must be some mistake and needing to seek out multiple opinions. Denial can be a powerful motivator. It can push you to search for answers and receive the help of those in the know. But it can also immobilize you, holding you back from taking the necessary steps.
Giving yourself time to process the news and acknowledge your feelings is important. It is also essential to reach out to others for support. Talking to friends and family, or joining a support group, can help you to understand the diagnosis better and to come to terms with it.
You may feel frustrated, resentful, or angry with the diagnosis at this stage. You may feel like it is unfair or that it is not the outcome you were hoping for. Anger is generally seen as a normal response to the tension and stress which often accompany distressing news. Nevertheless, it can manifest in a fury directed at oneself, one’s kids, one’s significant other, or even towards the divine. Often, parents channel their anger at the medical professional who delivers the diagnosis.
How to cope with anger
Feelings of anger can be a healthy way of expressing frustration. They can act as a tool to help relieve tension and facilitate positive energy flow without damaging relationships or putting oneself in harm’s way.
It is essential to acknowledge your feelings and healthily express them. Schedule a regular time and place to vent your rage in a safe space. Some may yell in the car and roll up the windows to contain it; others find solace in meditation, yoga, or physical activity. Writing can be beneficial, too – it’s a way to get to the bottom of the anger and help you understand it. Make sure those around you know that your fuse is short and apologize if you go too far; they will likely make allowances.
Bargaining is the third stage of grief. As you reach this moment of desperation, a sense of hopefulness and faith comes over you. You make pledges to yourself, a higher power, or a specialist in the belief that these promises can alter the diagnosis. You may even cling to the thought that a particular therapy, class, or treatment will provide an ideal solution.
How to cope with bargaining
While you may feel like you cannot control the situation, you can control how you respond to it. Practicing mindfulness and focusing on the present moment can help to bring a sense of peace and acceptance and can help to ease the urge to bargain. It can also be helpful to engage in positive activities, like spending time with your family or immersing yourself in a hobby.
In this stage, you may feel overwhelmed, hopeless, and helpless. You may find it difficult to cope with the diagnosis and struggle to find joy in everyday activities. As the initial shock of the diagnosis subsides, deep sadness and grief begin to set in. Whether or not we’re aware of it, we all have visions of our children’s future. Parents of children with autism, however, feel a sense of mourning over the life they had once envisioned.
How to cope with depression
Remind yourself that depression is a normal part of the grieving process and that it is okay to feel this way. It is crucial to reach out to friends and family for support and to practice self-care. Taking time for yourself, engaging in activities you enjoy, or spending time with friends can help to ease your depression and to provide a sense of comfort.
Acceptance is the fifth and final stage of grief and is the point at which you come to terms with the diagnosis. Accepting the diagnosis may seem impossible now, yet the road ahead will become clearer as you seek answers and empower yourself by asking questions. Many families are driven to explore treatment options and gain support from those sharing a similar experience. In this stage, you may find a sense of peace and understanding. The diagnosis becomes an opportunity for growth and for learning.
How to embrace acceptance
Acceptance does not mean you are happy with the diagnosis or have forgotten about it. Instead, acceptance is the point at which you can move forward and start to build a plan for your child’s future. Take the time to build a support network of friends, family, and professionals who can help you to navigate the road ahead. This is not the end; it is merely the beginning of a winding journey. Though the road may take you back to familiar places, there is the promise of hope, progress, and joy ahead.
Strategies for Accepting your Child’s Autism Diagnosis
Accepting an autism diagnosis is a process that takes time and patience. However, here are some strategies that can help you to accept the diagnosis and to move forward:
- Educate yourself. Learn as much as you can about autism and the resources available to you.
- Reach out to others. Talk to friends and family, join a support group, or seek out professionals to help you navigate the diagnosis.
- Practice self-care. Take time for yourself and engage in activities that bring you joy.
- Embrace your emotions. Acknowledge your feelings and healthily process them.
- Focus on the present. Practice mindfulness and focus on the positive aspects of your situation.
- Create a plan for your child’s future and build a support network to help you to achieve your goals.
Accepting an autism diagnosis can be difficult, but it is essential to remember that there is hope. With the proper support and guidance, you can learn to cope.
What to do after an autism diagnosis?
Once the initial shock and denial subside, be proactive in getting support. Reach out to those who are familiar with autism and have experience in guiding families through the journey. No matter where you are in your journey, Circle Care Services can help! Our expertise in the autism field and deep knowledge of diagnostic processes will make finding the right solution for your child easier. So let us do the research – you focus on your child!
If you’re interested in learning more, consider signing up for our email list! We send helpful tips and tricks for parents of children with autism who might benefit.
About the Author
Nicola Killops is mom to James, an 18-year-old with HFA, and she lives in Johannesburg, South Africa. Nicola is a writer who is focused on supporting parents and teachers of children who are “different” according to commonly-held views. Before starting her career as a writer, she specialized in gifted education and taught at Radford House School, a school for gifted children.
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