“I’m sorry, but your child has Autism.” These are the hardest words to hear from a doctor. No matter what age your child is, or how long you were sure your child is on the spectrum, hearing the words can feel like a dagger in the heart. Up until that point, there is still a tiny bit of hope that your child has an easily treated condition.
My son was five when we received the diagnosis. I knew that he was autistic, but no one would take me seriously. “Globally Delayed” is what everyone said. No reason why, he just was. I had taken my son to several specialists for testing. We had ruled out all kinds of diseases and disorders. Blood tests would come back as abnormal, and I would be living in fear that my child had a terminal condition, until the new results would come back as negative. You would think that it would be a relief to finally have my son diagnosed with autism and not a condition that would take his life.
We went through several family doctors and pediatricians before we found one that asked a very important question, “What is his diagnosis?’ I told him globally delayed. My son’s new doctor wanted to know why. He explained that there has to be a reason, that globally delayed was not a diagnosis. I broke down. I knew he was right, but no one else cared about an exact diagnosis. I explained everything we had gone through, and he examined my son and looked at the medical records. At the end of the visit, he said he wanted to set up an appointment for my son with developmental specialists. It was time that we got our answers.
It took a long day of evaluations, questions, and observations and a heart wrenching discussion with the doctor in charge of the evaluation, but we finally received the diagnosis I already knew to be true. My son is autistic. Five years later, I look back and I still cry when I remember that day.
How do you handle it when you finally have the diagnosis? You let yourself. You let yourself feel. You are about to officially take a long and difficult course in your life. You were already on it, but now, it is official. Now you can come up with a plan that will help your child and your family. There are a lot of resources available now, that were not available when my son was younger. You need to educate yourself on your rights, your child’s rights, types of therapies, insurance, SSI, community resources and more. You are your child’s mother, advocate, friend, teacher, and therapist. No one knows your child better than you. Do not let anyone tell you that you are wrong or that you don’t know what you are talking about.
Raising a child with autism is hard, but it is also rewarding. You will find a strength inside you that you never knew you had. You will discover patience and intuition that will get you through each day. It is important that you live in the day. When you start looking towards the future, you may start to feel overwhelmed. There is plenty of time to plan for the future. Take the early years as a time to focus on the present. Once your child becomes a teenager, your world will change again. You will need to start planning for an adult with a disability.
The most important piece of advice I can give a parent with a child that has just been diagnosed with Autism is to love your child and take care of yourself. You have to find something that is just for yourself, a long bubble bath each night, or a couple hours at the store, alone. There are a lot of sources of information to draw from, but it is your responsibility to prepare and implement a plan for your child. You need to take care of yourself or you will not be able to take care of your child. There is no right or wrong decision, not when it comes from love. You will make mistakes, don’t dwell on them. There is not a parent alive that hasn’t done something they wish they can go back and redo. Take care of your family. Your journey may be scary at first, but it is also a very rewarding and loving life.
Editor’s Note: Re-published from 2009.