From Denial to Diagnosis: A Parent's Journey to Getting Help for Your Child's Special Needs
When you hold your baby in your arms for the first time you may daydream about the future. You may envision your child losing their first tooth, tasting ice-cream for the first time, or hitting a home-run at their first baseball game. Your vision probably includes an expectation that your child will progress through the normal milestones of development. In your mind’s eye you see your child learning how to walk, run, and ride a bike. Somewhere in the future your child is making friends and getting good grades at school. But seldom does this daydream include anything about neurological disorders. Nobody holds their baby close to their chest and dreams of acronyms such as ADHD (Attention Deficit Hyperactivity Disorder) or ASD (Autism Spectrum Disorder).
The expectations we have for our children to progress normally are so strong that we sometimes dismiss the signs that our child’s behavior or development is askew. The emotional repression of what we are actually seeing before our eyes is a protective response most people use at one time or another. It is called denial. And I know all about it because I was in denial about my youngest son’s challenges for several years before his diagnosis. I am writing about my experience in hopes that you as a parent or caregiver can avoid wasting valuable time which could be better spent helping your child. Yet I realize that denial can be a very strong defense and it sometimes takes years to break through. At least that was my experience.
I feel that in many ways that I have no excuse for my denial. I was a special educator for over ten years. I have had tons of experience in the field and understand the early signs of most neurological disorders. Yet I totally missed these signs and symptoms when it came to my own child. How could I be so blind? Looking back, I feel I had assistance to remain in denial. There are many professionals who are reluctant to label a child with any type of delay or disorder early on. And this may be for good reason. One or two reported symptoms from an overly worried parent does not constitute a diagnosis. Yet it may be something to take a look at over time and not dismiss it with a hearty, "There is nothing to be worried about" retort as was given to us about our son.
When my son was two he was not saying any words. Our pediatrician, at the time, told us not to worry. "He’s a boy, they lag behind girls in verbal skills. Don’t worry, he will talk." In six months from this initial assessment our son was still was not talking. I noticed that, instead, he would take our hands and use them like tools to get what he wanted, leading the way to the desired object. Our jovial pediatrician still maintained that our son was still very young and that he would talk soon.
Meanwhile, one of my best friends who is an occupational therapist would come to visit with her children. I noticed her watching my son carefully and I had to ask what she was thinking. With some hesitation she asked me if my son gave much eye contact. I told her honestly, "He does but it seems much less lately. I think he is too interested in his toys to be bothered." Then it dawned on me that my friend was pointing out a symptom of autism. Immediately I became defensive. "Why are you asking this?" I asked guardedly. Then she proceeded to tell me her concerns that she noticed that my son did not give eye contact, didn’t respond to his name, and seemed to be in his own little world. "He is NOT autistic, if that is what you are thinking" I said with a rising anger.
After my friend had left, I thought about what she had said. I asked my husband, "He gives eye contact doesn’t he?" I cut his response off with, "Even the pediatrician isn’t worried." My husband was equally incredulous, "Autism? Where does she get that idea from? Working all day with kids who have disabilities is making her see problems where this is none. He is just fine." But later we would both begin to remark on things we were seeing and wondering, what if she is right?
Shortly before my son’s third birthday we moved out of state. I made a new friend who had children the same ages as mine. She was also a pediatrician. One day while my son was playing in the playground I talked to her about my worry over his lack of development. When I asked her what she thought about his lack of speech and the way he liked to play in isolation she confirmed what my other friend had been saying all along. The term "autism spectrum disorder" was said aloud and it was like the world stopped. I still wasn’t ready to hear it. I glared at my new friend and the conversation was dropped.
Soon after, I took my son to a speech therapist. Autism was mentioned again. Plans were made to get a formal diagnostic evaluation. In a way I was relieved. I didn’t have to fight anymore. There was a name for what we were seeing. I could then begin the long journey of trying to help my son. I called my pediatrician friend on the phone. I apologized for getting angry and told her, "Thank you." She had initially been afraid that that had been the end of our friendship. I told her that yes I was mad but not at her, just frustrated and angry about the whole experience. Who wants to hear that their kid has autism?
I phoned my other friend who had originally brought up the idea that my son had symptoms of autism and I told her of his pending formal diagnostic evaluation. She was upset for me and she told me that she had really hoped that she was wrong. I said quietly, "I know."
The entire process of seeing all the specialists and professionals took some months. My son was nearly four before an official diagnosis of autism was given and we could then access the services necessary for his therapy and care. We could have begun the process much earlier had it not been for my denial. What if my friends were wrong? We could have gotten things checked out and if there was no problem we would have walked away unscathed.
The message I wish to give to other parents is that if a friend, teacher, or relative brings up an observation about your child, don’t be too quick to dismiss it. What if it is a symptom of a disorder such as autism or ADHD? If there is no serious problem, then great, at least you got it checked out. Even if you do not agree with a professional assessment or evaluation of your child you can always get a second opinion. But what if your well meaning friend or relative is actually right? You don’t want to waste any time in getting your child services and treatment. Most experts will tell you that the earlier treatment is started, the better chance your child will have in overcoming or learning how to handle their challenges.
My motto over the years has been"when in doubt"get it checked out. If your child is showing signs of ADHD, autism, or any other neurological disorder read and research all you can. Get support from people who have been in the same situation. Remember that whatever you are dealing with, you are not alone. There are others who can help. We hope that you can find such support as well as information and resources right here on ADHDCentral.