Advice to Parents of Newly Diagnosed Children on the Autism Spectrum
It has been nearly a decade now since my son was given a diagnosis of Autism. And like Jerry Garcia might say, "What a long strange trip it has been." When my son was baby in my arms I could have never predicted the journey we would take together as mother and son.
I have flashbacks to when he was a toddler with golden curls and an impish grin. My son's first word was "GO" which he would chant from the confines of his crib in the middle of the night. It was an appropriate word for him as his body was in constant motion. He was also a little escape artist. I remember the first time we lost sight of him in a store. My husband, my older son, and I split up to find him. After several minutes (it seemed like hours) of frantic searching, we found Max happy and immersed in playing with the automatic doors at the entrance of the store. He was oblivious to our worry.
Then there were the times when he would escape from our house when it grew dark. He would dart out carrying a picnic basket. Why? He wanted to feed the dinosaurs he knew lived on the moon. There was no persuading him differently. We soon put multiple latches and locks on all the doors. But Max would always figure out ways to unlock any mechanical device. Houdini had nothing on him.
Along with dealing with a child who liked to take off unannounced, there were many other challenges in store. Toilet training was yet another hurdle to face. I have one recollection of running after my naked son with a potty chair as he taunted that he would pee on the floor. We also had to contend with issues of motor planning. For example, I had to teach my son how to sip from a straw or blow bubbles as he lacked the motor coordination to do so. Communication proved to be one of the biggest challenges for my Max. We had to teach him the rudiments of language as though he were a foreigner who was visiting here for the first time. Max would use words but not for the purpose of relating or connecting to another human being. My Max was well over five years old when I finally heard him call for me by name, "Mommy." It was a huge milestone that other parents get to take for granted. It seemed nothing would come easy for my son.
We also have witnessed many obsessions or passions as I would rather call them. Dinosaurs, trains, and churches still excite him to this day. But early on my son's passions revolved around repetitive motor movements. Max would be thrilled by pulling up and down blinds, turning on and off lights and opening and slamming doors. In fact, Max demonstrated these early rituals when we first had him evaluated.
We began by taking Max to see a speech pathologist. At that time I wondered if Max had a hearing problem because he wouldn't respond to his name. The speech therapist sat across from Max at a little wooden table. She began to hold up flashcards of objects for him to identify. Max, totally uninterested, leapt away from the table to the blinds which he pulled up and down repeatedly. The speech therapist called his name. Max never looked back towards the therapist. It was as though she did not exist to him. I remember feeling my heart sink. I then turned to the therapist and asked, "Could any of what you are seeing today be caused by a hearing loss?" As soon as the words escaped my lips I already knew the answer. A silent shaking of her head told me all I needed to know.
A couple of months later after being tested all day by psychologists, therapists, and other clinicians, I was told my son had autism. It was one of the most difficult things I have had to hear in my life. And it still is to some extent. I have long since accepted that my son has autism but I can't say that things are any easier. The challenges are just different. Each stage of growth brings new issues to confront. We are entering the teenage years now. And I feel like we are entering a new and unexplored terrain. I don't know what is in store but I know that whatever happens next, my son and I will face it together as we always have.
I would like to impart some of my experience now in how to cope with these challenging times after the initial diagnosis. And know that this "advice" is terribly subjective. Every child and parent is different. I cannot truly walk in your shoes. But I can tell you about my journey and what has helped me to cope and to survive. My hope is that my words will provide some comfort and hope to others who travel a similar path.
You are in this for the long haul. As soon as I heard about my son's diagnosis I immediately sprang into action. I had multiple appointments with therapists, doctors, and even a geneticist. I researched the newest treatments; I joined multiple support groups, and I spent every waking moment thinking about autism. I know that the emphasis is upon early intervention and yes this is a critical time right after your child's diagnosis. But you have to think that you are going to helping and parenting your child for many decades to come. It is easy to burn out in the first few years if you are not careful.
Take some time for yourself. I know that this is easier said than done. How does one find time for something seemingly so frivolous as a cup of coffee out with a friend? It isn't frivolous. It is a time for you to recharge your batteries. And don't feel guilty. Hire a babysitter. Get some respite. You will need this time away, so that you can keep your sanity. Think of yourself as a prize fighter who needs to conserve some emotional energy so that you can stay in the ring. I used to feel guilty for taking any time for myself. I felt like how can I spend this time away from my child who needs me? But your child needs a parent who is not burned out. Your child needs you to be happy.
Beware of people selling cures. You can get some very good information from the internet and from books but if I have learned one thing about autism, it is a big business. There are many people out there who will want to sell you hope in a bottle whether it be from a certain methodology or from a biological treatment. I must have heard certain stories over and over and with different variations to the theme for a decade now. The story starts with a child who is not talking, they use the method or the treatment, and the child miraculously is telling the parents, "I love you." The stories pull at your heart strings. But please beware. In my humble opinion, there are no cures. There is just a lot of hard work. If it seems too good to be true it probably is.
Spend time having fun with your child. Not every moment in your child's young life needs to be some great therapeutic moment. I recall talking to another parent who was proudly telling me that she did her son's program every single day of the year and including Christmas. She showed me how her family did therapy with her son as he opened presents. I was aghast. There is a time for therapy and treatment and there is a time to take a break and just be a normal family. Have fun and get to know your child. Enjoy being a parent. The time passes so quickly. You don't want all your memories to be about the child's learning program.
- Let your other children be children. Your child on the spectrum doesn't need another therapist in the form of a sibling. Your child needs the give and take of normal everyday relationships with their siblings. I have seen far too many families create little parents or therapists out of their child's brothers and sisters. It is great for brothers and sisters to join in but to force them into caretaking or a therapy role may create resentment. Your child with special needs can benefit more from learning how to relate to their siblings in a natural way.
These are but some things I have learned along the way. Now how about you? Do you have any suggestions or tips on how to survive those years following the diagnosis of autism? Please share your story here. You will help others in the process.
- You are in this for the long haul. As soon as I heard about my son's diagnosis I immediately sprang into action. I had multiple appointments with therapists, doctors, and even a geneticist. I researched the newest treatments; I joined multiple support groups, and I spent every waking moment thinking about autism. I know that the emphasis is upon early intervention and yes this is a critical time right after your child's diagnosis. But you have to think that you are going to helping and parenting your child for many decades to come. It is easy to burn out in the first few years if you are not careful.