How to Cope When Your Child Gets an Autism Diagnosis
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 things I learned while dealing 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.
As the Song Says, "We All Need Someone to Lean On."
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.
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.
I Needed to Talk But People Didn't Want to Listen...So I Paid Someone.
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.
Take Time for Yourself. Don't Let the Autism Consume You.
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.
Never stop having fun with your kid!
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.