As a mother with 16 years of experience parenting a child with autism, I have learned a lot along the way. Prior to becoming a parent I was working in the field as an instructor and behavioral therapist for children and adults with multiple disabilities including autism. But there is a huge difference between my clinical experience and my hard earned wisdom in parenting a son with special needs. Clinicians, teachers, and therapists go home for the day but parents are pretty much on call 24/7. It is also a very different situation to help a child cope with meltdowns in a clinical setting with other professionals to assist vs. being a parent attempting to help your own child calm down in the middle of a public place. The experience is different emotionally as well. A professional can care for your child and their well being but it is the parent who stays up in the middle of the night with worry or who feels that personal joy when first words are spoken especially if the word is “mommy.” Despite my credentials, education, and career experience, I want to write this post purely from my perspective as a parent.
Here are some things about this experience that I would like to share with you.
1. The true experts are parents.
When your child is diagnosed with autism you may not know much about the diagnosis. But I guarantee that will change when you leave the clinic. Most parents I know who have a child with autism hit the ground running after the diagnosis is given. You research, you read, you attend conferences, and connect with others who know about autism. But most of all, you know your child. There is a saying which is so true: If you have seen one child with autism…then you have seen one child with autism. Every child is unique despite the label. Many “experts” may advise you on everything from the best teaching methods to discipline. But as a parent you know best about how your child learns, responds, and reacts to environmental stimuli. An expert who knows about autism doesn’t necessarily know what is best for your child. But you do. Trust your gut.
2. Not all children with autism are “little professors.”
In many ways autism and especially Asperger’s Syndrome has been romanticized by movies, books, and general mythology about these disorders. I personally loved the movie, Rain Man, which depicted the life of a man considered to be an “autistic savant.” But not every individual diagnosed with autism is like rain man. We see fictional TV shows with autistic children solving mysteries by cracking mathematical codes or displaying other genius qualities and we think this is autism. It is and it isn’t. For every child or individual with autism who has savant skills there are hundreds more who are seriously impaired. And you also have to remember that even if the person with autism has specialized skills or talents, this does not mean that they do not have extreme challenges in other areas.
3. Nobody has a crystal ball to predict your child’s future.
A lot of parents are told some very difficult things when their child is diagnosed with autism and some of these things are not true. For example, some parents are told that their child will never talk or that they will never be able to connect meaningfully with others. I always want to ask, “Oh yeah, where’s your crystal ball?” Children who are diagnosed at a young age can grow and change in so many ways that may seem hard to believe at the time. Don’t accept any gloom and doom prophecies from clinicians. It won’t help your child and it won’t help you. Where your child begins does not predict where your child will end up. Have faith that growth and change are possible for every child.
4. Your child doesn’t need a perfect parent, your child needs you.
Following my son’s diagnosis I felt enormous pressure to be a perfect parent who would solve all my child’s problems. It slowly dawned on me that my son was not in need of saving and that I didn’t need to be some super human mother. Both goals were impossible and if pursued, would drain my valuable energy. I needed to accept both my son’s gifts and his challenges. But maybe even more so, I needed to accept that it wasn’t my job to “cure” him. It was my job to give him the tools he would need to become as independent as possible. None of us are perfect and our children do not expect or want perfection from us. They desire what all children do, acceptance and love.
5. Your child will grow up to be an adult.
There is lot of emphasis on the little kids who have an autism spectrum disorder with early intervention and an array of services. A lot of parents put all of their energy into that time period which can result in parental burn out for some. It is easy to forget that you are in this for the long haul. You don’t stop being a parent when your child reaches a certain age. You are a parent forever. Your toddler will grow to be a teen someday and then an adult. Sometimes it is helpful to look at the big picture instead of super focusing on one stage of growth. Remember too that learning does not stop at any certain age. You don’t need to put unnecessary pressure on yourself or your child to live up to someone else’s measure of developmental normalcy. Take the time to enjoy your child’s progress along the way towards adulthood. I know from experience that it goes by very fast.
For more information about autism spectrum disorders please refer to the following Health Central resources and articles:
You can also read more about Max and Me on our blog: The Autism Express
Published On: March 28, 2012