From Concern to Clarity: Insights for parents’ first steps on an autism journey

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In a Holding Pattern with Hard Questions?

Many parents just like you have been told their child has autism spectrum disorder. Sometimes the words are not exactly “ASD.” They might be “global delay” or maybe “pervasive developmental disorder.” Different terms have been used over the years, and that makes this confusing. In your child’s early years, you may have heard descriptions like communication or social delays, low frustration tolerance, sensory processing issues, and inflexibility. Some of these may stand on their own, but when linked together, these descriptions can point to ASD. Parents can spend a lot of energy asking more questions, exploring various explanations, or diving into one single dimension of their child’s challenges, feeling unable to take in the whole picture. This flurry of worry can be exhausting and rarely gets you closer to meaningful learning. We hope this post provides some clarity for parents who may be in a holding pattern of concern and uncertainty.

What is ASD? 

Regardless of the terms used, we know that most parents have very little previous knowledge of autism. It is a complex and puzzling disorder that has been challenging to educators, doctors, and researchers. In the U.S. especially, autism has been stigmatized as a mysterious, scary “epidemic.” For decades, resources have been poured into finding out what causes autism, often at the expense of efforts to support people with autism to live a good life. We now know ASD is a neurodevelopmental disorder that is much more common than previously thought. Recent prevalence estimates among children are as high as 1 in 54. ASD occurs on a continuum from very mild to severe challenges. Science tells us that ASD starts in the developing brain before birth. There is nothing that parents did during pregnancy or in the child’s early life that caused autism. Since there is considerable variability among children with autism, it is hard for us to compare our child to other children with the same diagnosis. 

Why the Label?  

Many parents ask, “does my child really need a label?”  No, but a professional who has given your child a diagnosis or service identification sees developmental signs that suggest your child will benefit from educational or therapeutic services. Essentially, your child’s developmental path looks different than the path that his same-aged peers are walking. These differences lead to struggles and frustration for your child as she spends time with other children and adults. A label constitutes an access pass to supports and services that can help your child get his needs met, communicate, be better understood by others, and, in time, better understand and advocate for himself.  

After diagnosis, many parents tell us that they have had concerns about their child’s development for several months. They’d noticed that they were persistently struggling more than other parents with their child’s eating, sleeping and/or ability to transition from one activity to another. They noticed things their child did that were different than other children their age. Yet, some parents say they never noticed anything different about their child and really feel the diagnosis might be wrong.  There are lots of families that say several of their family members have traits that are noted as signs of autism spectrum disorder. They are just fine with that. They accept their child as he is.  Yet, a diagnosis comes with avenues to learn and to gain resources to help your child in community settings. It doesn’t have to be an either/or scenario (EITHER I accept my child as he is OR I focus in on his challenges). You can BOTH accept your child as his is AND learn more about him, getting the tools and guidance you all need to make life smoother now and in the future. 

How Do We Know?

There is no specific test for autism spectrum disorder. No specific blood test, no specific action, no defining physical trait. Determination of ASD is based on the child’s behavioral characteristics and developmental pattern. It takes time for patterns to emerge. You have to watch what the child does or does not do. This is tricky because children respond differently in various situations. Some parents watch their child in an evaluation and are upset that the evaluator does not get their child to show all he can do. The evaluator is assessing the child’s response outside of established routines without a parent who knows how to engage the child. Remember the diagnosis also takes into account information you provide regarding developmental history. You are an important source of information. 

Diagnosis or evaluation can be done by an individual or a team. The benefit of a team is that several different areas of expertise are brought into the evaluation. A diagnostic assessment can be done as early as 18 months, and there are a number of reliable diagnostic tools. Many children are not diagnosed until 4 or 5. No matter your child’s age, do not be concerned that it is too late for intervention and support. The word diagnosis applies when a determination of autism comes from a medical doctor like a pediatrician or a developmental specialist, psychologist or a neuropsychologist. Evaluation is the term used in education and where a team approach is most common (including a teacher, speech clinician, and occupational therapist). We have also heard about some parents who used Google to recognize their child’s autism and have their observations confirmed by professionals later. You also can get a second opinion. You might get a slightly different decision because of timing and clinical experience, but this does not mean that your child’s autism is more complex. It illustrates that ASD is complex and clinicians make a diagnosis based on what they observe and what the parent shares. More labels likely reflect more or different consultation and not necessarily that the child’s autism has changed. 

All diagnosis or evaluation criteria agree on the accepted definition of ASD in the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association, Fifth Edition. For now, letfocus on the two characteristics defining an autism spectrum disorder. 

  1. Problems in social communication and social interaction. Examples you might see in a young child are difficulty in back and forth conversation, little interest in sharing interests or emotionslimited eye contact, little interest in imaginative play or other children.
  2. Restricted, repetitive patterns of behavior, interest, or activities in at least two instances like repetitive speech or motor movements, insistence on sameness, highly restricted interests, or hyper or hypo reactivity to sensory input.    

An easy way to see this in babies and toddlers is to look at the First Words Project from Florida State University.  Here you can screen your child, sign up for the Baby Navigator and see what autism looks like in toddlers. Some of the signs of autism in toddlers are “yes” to these questions: 

  1. Is it hard to get your baby to look at you? 
  2. Does your baby rarely respond to his/her name?
  3. Does your baby rarely share interest with you like pointing or showing?
  4. Does your baby rarely imitate actions like hugging a teddy bear or pretending to drink from a cup? 
  5. Does your baby get upset over unexpected changes? 
  6. Is your baby very sensitive to sounds, sights, and textures? 
  7. Does your baby have difficulty shifting attention? 

Process the Big Feelings

Many parents have shared their feelings on diagnosis. From fear and anger, to sadness, confusion, relief, or curiosity. It’s hard not to be daunted by the future when someone determines our child is not developing typically. Yet there is also relief to get some answers and pride at following up on your concerns. There may even be joy or surprise in seeing oneself or other relatives through the lens of autism. Write down or talk privately about all those feelings with a trusted person to regain your parental footing. This will take time and patience. Your child is the same child both before and after ASD is identified. You are the same parent who knows and loves him best. You can help support your child has he grows, particularly while his young brain is growing more and more neurons every day. You can enroll your child in your local school program or in therapy in our community. Yet the biggest impact you can have on your child’s development is what you do every day in your home. Your loving, responsive guidance cannot be overestimated. The ways you engage your child, nurture communication, teach and discipline, and have fun will shape your child’s life. We at CEA are here to offer you information and support through this journey. 

Author: Mary Powell, CEA Board President

Author: Editorial Team

A select group of our board members who have something to say, but want to say it together. We also use this byline for those who wish to write anonymously.

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