Finding out your child has Autism is a life-changing moment. You may first experience shock like someone just hit you in the gut. Depending on your personality and family dynamics, you may go through a range of uncomfortable emotions after the initial shock. Below are the five stages of grief that may present themselves in different ways.
Denial
“Timmy is just delayed. Every kid develops at a different speed. After all, no one else in our family has Autism.”
“Maybe we should wait for a year to get Susie tested again. She is only three and may grow out of it.”
The reality that your child has Autism can be weighty and distressing. You may experience denial of the diagnosis as you try to absorb the news and sort through your emotions. You may seek a second, or a third, opinion wishing for a different diagnostic result. You may also experience sleep problems, digestive issues, or other physical effects.
Searching
You may feel a sense of helplessness and try to alleviate it by looking for a solution. You may spend endless hours searching for a cure in the library or on the internet. You may try to bargain with God, begging for a miracle.
Anger
Your desperation may turn into anger when all the searching is to no avail. You may be angry at God, yourself, and the rest of the world. Your anger may push away those who love and care about you when you need their comfort and encouragement the most.
Grief
You may experience sadness as you mourn for the lost dreams you had for your child. Your emotions may still be raw and your pain real, but you will gradually come to terms with your new reality.
Acceptance
Eventually, you will come to a place of acceptance. The feelings of sadness and loss will still creep up from time to time, but you no longer resist the diagnosis. You realize that your life, and your child’s life, may not look like you originally thought it would, yet you are now ready to adjust and move forward.
When reality hits home…
Once you accept the diagnosis, you will be ready to act. Your goal should be for the entire family to work together as a team, grow closer and stronger, and to live to their full potential.
For yourself
“Care for myself? That’s selfish. My child is the one who needs care. I need to be all that I can be as a mom.”
Exactly!
Precisely because you need to be there for your child with Autism, you must take care of yourself. You cannot be the best parent you can be if you are sick or constantly on edge. Here are some ideas to help you get started on taking care of yourself:
- Give yourself time to re-calibrate.
It takes time to absorb your child’s diagnosis, obtain a treatment plan, understand your child’s unique challenges, assess the impact on the family, and decide on next steps! Plans need to be replaced, priorities rearranged, goals reset, and thinking reoriented. It takes time for you to adjust to the new reality. Be kind to yourself and give yourself time.
- Take time to yourself.
Parents often feel guilty about leaving their child with Autism with a babysitter or other caretaker. Wise parents know their limits and understand that they cannot take care of the family without taking care of themselves first. Take care of yourself by taking a break to run errands, go for a walk, take a nap, or enjoy an aroma bath. Do something that relaxes and reinvigorates you.
- Stay connected.
You may be overwhelmed and in a survival mode when you first find out your child’s diagnosis. Socializing is the last thing on your mind as you try to sort through your own emotions. Your daily life devolves into doctor visits, therapy sessions, school meetings, and the search for the next medical breakthrough. You may even tire of people’s sympathetic looks or constant asking, “How are you doing?” At the end of the day, you just don’t feel you have any reserve left for friends. As a result, you may feel isolated and alone.
It is important to stay connected with the outside world. You need the support, encouragement, help, and perspective from friends, family, faith communities, and support groups. Talk openly and candidly with your friends and family, helping them understand what’s going on in your family and how they can best support you. Accept their offers to help. Educate your faith community about Autism and how they can accommodate your child. Join a parent support group in your community, online, or in your child’s school. You will receive parenting tips and other helpful information from these groups. Moreover, you will meet and make friends with other parents who face the same challenges. Then you will realize that you are not alone.
- Acknowledge what you have accomplished.
Parents are often the worst critics of themselves. It is easy to get discouraged when you look at everything you have not done. You may feel you have not done enough for your child with Autism, you have not given enough attention to your other children, you have not been kind to your spouse, and you have not done the dishes. Focusing on the “nots” will drive you nuts.
Focus on what you have accomplished during the day. When you are honest with yourself and look back on the day, you will be amazed at how much you have actually done.
For your marriage
Your spouse should be your best ally on this Autism journey. Unfortunately, many couples deal with the diagnosis differently, disagree about the treatment plan, or clash over how the child with Autism should be disciplined. They stop communicating to avoid arguments. They wallow in their guilt and nurse their own pain. They may even make a decision without consulting with their spouse. As a result, they withdraw from each other. Your child with Autism needs you both and so do your other children. Remember, you are in this together. You need each other’s support and help.
- Extend grace.
In addition to the usual parenting anxiety when a child is born, parents of a child with Autism have to deal with the unique challenges of the disorder. It is taxing for both of you to navigate the emotional, financial, medical, and relational issues. Therefore, extend grace to each other and be patient. Allow your spouse time and space to process the changes.
- Spend time together as a couple.
Autism changes your marriage dynamics. You may be reluctant to leave your child with Autism to a sitter and go on a date night. You may be too spent to show warmth and affection to your spouse. Plan some alone time together, have fun, and do something you both enjoy.
- Communicate.
Keep the line of communication open. Share your feelings, thoughts, and concernswith each other. Talk openly as you work through disagreements. Be a good listener and do not jump to conclusions.
- Don’t forget simple courtesy.
It is so easy to take each other for granted that couples forget simple courtesy. A warm “good morning,” a sincere “I really appreciate you,” and an affectionate “you look nice” will go a long way.
- Share the responsibility.
Share family responsibilities such as chores, homework, therapy sessions, school functions, or other tasks the best you can.
For your child with Autism
- Accept your child for who they are.
Do not define your child by the diagnosis. Accept and love your child as God’s unique creation. Your unconditional love and acceptance of your child are what they need the most.
- Be a student of your child.
Discover your child’s strengths and interests and provide opportunities to cultivate and develop those areas. This will help with their confidence and give them a sense of accomplishment. Find out what causes stress and triggers disruptive behaviors in your child. Learn ways to minimize the stressors, help your child calm down, and diffuse tense situations. The more you know your child, the better you can help them become independent and productive individuals.
- Learn about Autism.
The more you know about Autism overall, the more equipped you will be at different stages of your child’s development. Learn about your child’s unique challenges and treatment options. Ask questions and take advantage of valuable resources and tools.
- Be an advocate.
Know your child’s rights. Under the Individuals with Disabilities Education Act (IDEA), your child is eligible for free or at a low cost for certain educational services. Keep yourself informed about the rights and services available and the best practices for your child. Collaborate with your child’s teachers and therapists so your child can apply the skills they learn consistently across different settings. Do not be afraid to share your concerns and communicate what needs to be adjusted or changed regarding your child’s treatment or education plans.
- Focus on what you can do.
Do not waste your energy lamenting what cannot be undone, wishing for what cannot happen, or worrying about what you cannot control. Instead, direct your energy to what you can do for your child. It is empowering to recognize that there is a lot you can do for your child, and you are not alone in this journey.
For your other children
Your other children may struggle with a range of emotions, yet at a young age, they might not understand their emotional reactions to their sibling with Autism.
- Help them understand.
Help your other children understand (1) what Autism is, (2) how it affects their brother or sister, and (3) why you interact differently with them vs. their sibling with Autism. Starting early, explain to them honestly and in age-appropriate ways.
- Spend time with them.
Time alone with them is the best gift you can give your other children. Listen to them deeply and understand what’s going on in their world. Give them your undivided attention during this time.
- Find sibling support groups.
Your children can build friendships with peers who have siblings with Autism. They can share their experiences and find support from their peers.
For your family
- Establish simple family traditions.
Family traditions give the entire family a sense of consistency, stability, and unity. They do not need to be elaborate or extensive. They can be as simple as Friday movie nights or Saturday family game nights. These simple traditions create fun times and lasting memories for your family.
- Reach out.
Get involved in community events or service projects as a family. Community events provide social opportunities for the family. Service projects infuse meaning in your family life by giving back to society.
- Seek help.
If stress or difficult emotions disrupt your daily functioning, it is time to see a mental health professional. Your mental state plays a vital role in the well-being of your loved ones.
When caring for your autistic child negatively impacts your relationship with your spouse or other family members, seek marriage or family counseling.
Consider finding a therapist for your child(ren) without Autism if you notice them internalizing and harboring complicated feelings and expressing them in unhealthy ways.
Parenting a child on the Autism spectrum can take a toll on you physically, financially, mentally, relationally, and emotionally. It is not an easy job trying to balance your resources with your personal needs and the needs of your children, spouse, work, and family. It takes time to find a healthy rhythm and good balance. Be patient and give yourself a healthy dose of grace. Remember that there is plenty of help and resources available. You are not alone!