How to Cope & Carry on After Your Child Gets an Autism Diagnosis
When my 4-year-old son was diagnosed with autism, I fell into an abyss of depression from which I thought I'd never escape. Darkness and despair engulfed me, and it seemed unlikely that I would ever smile, laugh, or feel unburdened again. I was blind to the people and things that had once brought me joy while becoming fixated on "curing" my boy. Today, 11 years later, I can see the light once more. I'm now happy to share my journey, hoping other moms and dads can learn from my mistakes.
Take Good Care of Yourself
Most of all, I want parents to know that they matter. It's easy for them to forget this as doctors, therapists, teachers, family members, and friends focus intently on the youngster while their needs get largely ignored. Weighed down with medical appointments, therapy sessions, and constant care-taking, their identities get rapidly reduced to a handful of words: parents of an autistic child.
Those like me, who felt unseen and unloved as kids, can find the diagnosis especially traumatic. If their current situation gets conflated with the pain of their past, they may get deeply depressed. This happened to me as my mother's cold indifference about my son triggered memories of when she was emotionally detached during my childhood.
Ignore the Chatter
My son's diagnosis, coupled with my mother's lack of compassion, forced me into counseling. In those sessions, my therapist said what I desperately needed to hear: "You matter! Take good care of yourself! The best way to help your child is to maintain your own physical and emotional health."
I hope parents can embrace this message. Everyone around them will add their two cents to the never ending list of things they can be do to help their child. They'll recommend occupational therapy, speech therapy, behavioral therapy, special diets, exercises, computer programs, play groups, tutoring, sleep routines, discipline techniques, and so on. Yet, I want moms and dads to ignore a lot of that chatter and take good care of themselves. Here are some steps that I recommend:
1. Acknowledge your anger.
2. Realize that support groups aren't for everyone.
3. See a therapist.
4. Know that some friends will disappoint and desert you.
5. Enjoy your child.
1. Acknowledge Your Anger
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 it happen, mad at life for being unfair, mad at my friends who took their typically developing kids for granted, mad at my family for offering little support, and mad at myself for being so damn mad. Like many others of my gender, I had never made peace with that particular emotion, thinking it was wrong: raw, ugly, unfeminine, and uncontrollable. I thought it was something that women shouldn't feel, especially mothers.
Yet, even as I tried to dodge my rage, it was pummeling me. My therapist would say to me at each session, “Depression is anger turned inward.” After many months of hearing this, I finally understood what she meant and surrendered to my rage. I had to give myself permission to feel all my feelings without shame, guilt, or the belief that I was a bad mom. I needed to be furious about losing the son I'd always imagined before I could embrace the one I had.
2. Realize That Support Groups Aren't for Everyone
After my son was diagnosed, the number one piece of advice I received was: “Join a support group!” Everybody seemed utterly convinced that it was a panacea, providing me with a ready-made community of parents who were experiencing the same feelings, challenges, and heartaches. However, because autism is a spectrum disorder that affects some kids mildly, others severely, and everyone else somewhere in between, there was little common ground in the support group I joined. Instead of finding it comforting, it actually made me feel more distressed, isolated, and even suicidal.
Sitting there week after week, it felt like more weight and worry was being added to my load. Moms and dads told heart-wrenching stories about their kids rocking back and forth for hours, banging their heads violently against walls, and pulling out their hair. 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.
Because my son is high functioning, none of these tales mirrored our situation. In fact, they made ours seem almost inconsequential in comparison. I felt uncomfortable sharing my experiences and, therefore, felt even more alone.
3. See a Therapist
Because my son was high functioning, I didn't need to be in that particular support group. What I did need, though, was to talk with someone who wouldn't ask questions, give commentary, make judgments, or serve up advice. I needed what the Buddhist monk and Zen master, Thich Nhat Hanh, calls "compassionate listening" where the speaker is allowed to "empty her heart."
For a long time, I had rejected the idea of seeing a professional. I thought it was unnecessary when I had friends and family. Over time, though, those folks started to pull away—unwilling or unable to provide the necessary support. Those who stuck around didn't know what to say or what to do and our relationship grew strained.
When I finally decided to get counseling, it was one of the best decisions of my life. My therapist did compassionate listening so I could purge my pain. She helped me conquer my depression so that I could once again function as a loving wife, devoted mother to both my sons, and a well-balanced and emotionally healthy human being.
4. Know That Some Friends Will Disappoint and Desert You
I had always played the role of confidant among my long-time group of friends. Since I led a peaceful existence and they had on-going drama, I was the one to listen and provide support. It was always my belief, though, that my pals would return the favor if and when I needed help. Yet, when my son was diagnosed with autism, most of them abandoned me.
While devastating at the time, I look back now and see the mistakes I made. I had surrounded myself with friends who were great at receiving help but not giving it. Today, I've learned my lesson and pick my friends more carefully, making sure there's reciprocity from the get-go.
5. Enjoy Your Child
All mothers struggle to find time for exercising, eating right, getting enough sleep, and recharging their batteries. This gets magnified many times over for those of us who have children with autism. Not only do we have youngsters who need extra care, we can become obsessed with hastening their progress and trying to "fix" them.
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. Because I was so desperate for my son to make progress, though, I behaved more like his demanding personal trainer than his mom who loved and accepted him unconditionally.
Under my therapist's guidance, I pulled back from these activities with a newfound understanding that my son needed a mom, not a trainer. I set aside pockets of time for me to relax, read a novel, listen to music, garden, and decompress. Most importantly, I started to be silly with both my sons and enjoy the present moment.
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. Most of all, though, I'm grateful that my husband and I stayed married and both boys are thriving. I'm a little battered and bruised, but I survived and am a better, kinder, and stronger person because of it.
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?
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
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 9
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 12
© 2015 McKenna Meyers