How to Cope When Your Child Gets an Autism Diagnosis: A Mother Shares What She Learned
When my son received an autism diagnosis at the age of 4, I fell into a black abyss of depression from which I thought I'd never recover. At that time, it was impossible for me to imagine I would ever smile, laugh, or feel light again. Everything that had once given me pleasure was lost as I had no energy to do anything but care for my boy and his younger brother. It felt like a hopeless situation from which I'd never escape.
It's Okay to Feel Angry. In Fact, It's Necessary
My son's autism diagnosis launched a long, drawn out battle between me and my anger. I was mad at everyone and everything: mad at God for letting this happen, mad at life for being unfair, mad at my friends who took their typically developing kids for granted, mad at my family for giving me no support, and mad at myself for being so damn mad. Like lots of women of my generation, I had never come to terms with that particular emotion, thinking it was bad: raw, ugly, and uncontrollable. I thought it was something women weren't allowed to feel, especially a mother.
Yet, even as I tried to dodge my rage, it was pummeling me. I started seeing a therapist who said to me at each session, “Depression is anger turned inward,” until I finally heard her. She helped me realize that by avoiding my fury I was prolonging and intensifying my despair.
Just as an alcoholic surrenders herself in AA, I relinquished myself to my rage. It turns out anger is a common stage of grief. I needed to feel mad about losing the son I had always imagined in order to embrace the one I had.
Once You've Acknowledged the Anger, Then What?
As I came to grips with my anger, I became fascinated with this emotion I had long avoided. Here are some ways I learned to deal with my rage:
Express anger in healthy ways when it arises. Don't let it build up over time and lead to depression. Each person needs to discover what works best for her. I found what helped me most was walking on the treadmill, doing yoga, journaling, and writing a letter to the person who made me mad (After waiting 48 hours, I'd re-read the letter and decide whether to send it or rip it up. One hundred percent of the time I chose to rip it up)!
Take control over the situation so you don't feel helpless. When I took steps to improve my situation (seeing a counselor, taking my son to occupational therapy, reading books about autism), I felt empowered and not so mad.
- Remember the saying: “Life is 20% what happens to you, and 80% how you deal with it.” That became my mantra. I saw some parents let an autism diagnosis destroy their lives and marriages and others who did not. A positive attitude is the difference.
Have realistic expectations of family and friends. When my son got diagnosed, it felt like my world had stopped. I became preoccupied with "curing" my son and expected my friends and family to help in any way they could. In other words, I was setting myself up for disappointment and resentment. People have their own lives and their own set of problems. Don't expect yours to become theirs and be grateful for the smallest of kindnesses. Don't expect others to listen endlessly about what you're going through or you'll soon find yourself alone.
Support Groups Aren't for Everyone
A common piece of advice I received was: “Go to a support group.” Everybody seemed convinced it was the panacea for all my troubles. But I found out that wasn't the case.
As I sat there week after week listening to parents talk about their autistic children, I fell deeper into an abyss of despair. It felt like they were adding weight to a load that was already too much to bear. I wasn't getting any comfort or camaraderie from the group as everyone had assured me I would. I felt more alone than ever.
Because autism is a spectrum disorder, ranging from extremely mild to extremely severe, no two kids are affected in the same way. However, when attending the support group, I was unaware of this salient point. I sat there as parents told stories about their children rocking back and forth for hours, banging their heads violently against walls, and pulling out their own hair. I listened as they talked about their marriages collapsing because of the stress, their finances draining because of the expensive therapies, and their futures in jeopardy because their kids would never be able to live independently. I thought they were giving me a look into what my life would become and I didn't like what I saw. I eventually stopped going because it was making me suicidal.
Going to See a Counselor Worked for Me
Because my son was high functioning, I didn't belong in that group. But I did desperately need to talk with someone. For a long time, I rejected the idea of going to a counselor. I didn't think I should have to pay a professional to listen to my problems. Wasn't that what friends and family do?
Over time, though, friends and family started pulling away from me—unwilling or unable to help. Those who stuck around didn't know what to say or what to do and our relationships grew strained. When I finally decided to get counseling, it was one of the best decisions of my life. I needed a professional to help me with my depression so that I could function as a wife and mother.
People Will Disappoint You, But You'll Survive
I had always played the role of confidant among my long-time group of friends. Unlike my buddies with their ongoing dramas, I led a peaceful existence and was, therefore, able to listen and lend support when they had breakups with boyfriends, blowups at work, and conflicts with their children. I was comfortable doing this, feeling needed and valued.
I expected these friends to return the favor in my time of need. Unfortunately, they were neither willing or capable of giving support and gradually stepped back from my life until they eventually vanished. It felt as though I had put coins in a piggy bank for years and then when I needed to make a withdrawal, it was empty— leaving me with nothing!
While it was devastating to discover I had no support system, I look back and realize the errors of my way. I had surrounded myself with friends who were great at getting help but not giving it. Upon hearing my son's diagnosis, I suddenly expected them to become different people. But no matter what the circumstances, a frog can't suddenly turn into a sheep! I pick my friends more carefully now and make sure there's a reciprocal relationship.
Take Good Care of Yourself or You Won't Be Able to Care for Your Kid
All mothers struggle to find time for exercising, eating right, getting enough sleep, and recharging their batteries, but none more so than those who have children with special needs. Not only do we have youngsters who need extra care, we can become obsessed with ways to hasten their progress. This was the case for me as I went into parental overdrive to get results. Sadly, my preoccupation with my autistic son caused me to miss a lot of my younger son's precious early years. I became a frayed wife and mother who wasn't enjoying life.
Each week I'd attend speech and occupational therapy sessions where I'd learn ways to help my son with articulation, movement, balance, and strength. I'd watch the therapists do activities with him and then I'd continue them at home. But because I was so desperate for my son to make progress, I was behaving more like his demanding personal trainer than his soft, loving mom. I was so busy trying to change him that I wasn't enjoying him for who he was. With my counselor's help, I was able to pull back from all the activities and realize my son needed a mom way more than he needed a trainer. I started to set aside pockets of time for me to just relax, read a novel, listen to music, garden, and decompress. I also started to have fun again with both my sons.
An Autism Diagnosis Might Leave You Battered and Bruised, But You'll Survive!
Eleven years later, my son attends a public high school and is doing extremely well. Tipped off by his lack of eye contact and social awkwardness, a perceptive few realize he has autism but most do not. While he seems to have come through it unscathed, I'm still dealing with some of the hurt—the family and friends who turned away and the resentment that followed. But, most of all, I'm grateful that my husband and I stayed together and both boys are strong and healthy. I'm a little battered and bruised but I survived and I know you can, too.
This Book Is Full of Fun Ideas
When I heard my son's diagnosis, I fell into a deep depression. During the years to come, I attended all his therapy sessions without fail and continued the activities at home. But, I took it all too seriously and missed the joy of having a child— the laughter, the hugs, the goofiness. This book helps parents to lighten up and enjoy their kids while helping them, too.
How to be helpful
How could you best help a friend whose child has autism?
Questions & Answers
I am a voluntary support person for parents with children who have ASD. What are the best ways to help?
First, let me say what a kind and admirable thing you're doing. I would have loved to have someone like you on my side when my son was little. On behalf of all parents with children on the autism spectrum, I say a most sincere “thank you.”
For most of us moms and dads, our biggest challenge is finding a willing and qualified person to watch our child while we go grocery shopping, get a haircut, have a medical appointment, or go to the gym. Some caregivers aren't comfortable watching a youngster on the autism spectrum. Others don't have the necessary experience. It would make a parent nervous to leave a child in their care (I would, for example, not have felt right about leaving my son with a teenage babysitter).
Even family members might not feel up to the task of taking care of a kid on the autism spectrum. Because my son was overly sensitive to touch, sound, and light, my mother was scared to watch him. She didn't know anything about autism and got freaked out when he'd stim. I encouraged her to read about autism, but she was unwilling. Without anyone to give me a break, I often felt alone, isolated, and depressed. I never had time alone to re-charge my battery.
My son would have benefited greatly from having another adult involved in his life besides his dad and me. Because he had articulation problems, he was extremely difficult to understand for anyone who didn't spend time with him. He needed a patient soul who was willing to listen carefully and encourage him to repeat until the communication was effectively made. It could be exhausting at times.
If you read up on autism and attend informational classes, you will be such valuable support for parents. People can be so harsh to moms and dads whose kids act differently than the norm. A person who's knowledgeable can offer comfort and support, jumping in to help and not passing judgment. I was hard enough on myself as the mother of a child on the autism spectrum. The last thing I needed was more people blaming me for my kid's unusual behaviour. What I did need was someone there who really cared.Helpful 5
My son was just diagnosed with autism. What's your best advice as I move forward?
My best advice is to take good care of yourself and don't turn your life over to “cure” your son's autism. Make sure you have a support team of knowledgeable and caring professionals (occupational therapist, speech therapist, pediatrician) and loyal friends and family members who will listen to your concerns, offer comfort, and watch your child when you need a break (which you definitely will). Know that some people will profoundly disappoint you, but focus on those who come through for you and your family. If you experience what I did, you'll be flabbergasted at who fails you and who stands by you!
Also remember that, even though you may not know much about autism, you know your youngster better than anyone else and you more than anyone else wants what's best for him. Some professionals only see what's wrong with your child (his articulation needs work, his coordination is poor, his eye contact is bad) while you see the big picture: his kind heart, his loving touches, his compassion with his little brother. Don't let their negativity get you down because they're just doing their jobs. You'll eventually develop a tough skin, but don't forget to release your emotions in constructive ways. Don't keep your anger and hurt bottled up inside of you. Writing in a journal, talking to friends, and seeing a counselor are all things I did to help me cope.
Lastly, I'd say that exercise was essential to helping me get through my son's diagnosis and every day since then. I was prone to depression before that time, and the autism made it worse. Taking long walks, going on hikes, running on the treadmill, and going swimming helped me keep my spirits up and not get overwhelmed with negative thoughts. Exercise helped me live in the moment and take one day at a time rather than worrying about whether my son would attend public school, graduate from high school, go to college, or get a job.
I wish you the best as you and your son begin this next phase. Take good care of yourself and reach out for help, knowing there will be times when a person reaches back and other times when they won't. But just keep reaching!Helpful 3
© 2015 McKenna Meyers