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A Child With Autism, Not An Autistic Child

“My child has what?” I have to admit, as a medical provider, I feel I should have known more about autism. My child was 18 months old, wasn’t talking, and wouldn’t turn her head to look at me if I yelled her name from only a few feet away. After ruling out a hearing issue, her pediatrician referred her for further evaluation at a children’s hospital downstate. She was evaluated by a speech therapist, a behaviorist and a child psychologist, all in one day. Their conclusion: autism spectrum disorder, or ASD.

Jon Borton, PA-C, and family

As a medical provider, it made sense. However, as a parent, I didn’t want to admit that my child was anything but perfect. That quickly changed. I had taken care of a few patients with diagnosed autism, but my daughter didn’t have some of the same characteristics that these patients had. I went from knowing what autism was and how it was generally diagnosed to resident expert (in my mind) in a very short period of time. Then an interesting thing happened. My son, who is 18 months older than my daughter, started talking at an expected age. He never had any signs of hearing issues and would turn his head to look in my direction if I called his name.  However, he lacked eye contact, was socially awkward compared to peers, and required strict adherence to patterns. Something just wasn’t “normal,” whatever that is. I initially thought, he only has an attention problem (which he does). After learning as much as I could about ASD, I started to strongly suspect that he had the condition as well. My son eventually went through the same testing and was given the same diagnosis.

The description of what my family went through over two years is used to highlight a couple of things. One is that every child is an individual and should be treated as such. A given condition, especially those in mental health, can present with a wide range of symptoms. Second, and just as important, is to hopefully increase awareness of autism in the general public. Since my ASD journey began, I have played a part in diagnosing several children and adolescents with the condition. I don’t know if it was “meant to be”, but that argument has often been hard to refute.

Autism spectrum disorder has become the fastest growing developmental disorder in the United States. In 2000, the CDC estimated that 1 in 150 children had autism. The most recent statistics estimate that number to be between 1 in 40 and 1 in 59 children. The increase in the prevalence of autism has been mostly attributed to improvements in screening and diagnosis of the disorder. It affects all racial and ethnic backgrounds and is about four times more likely to occur in boys than in girls

As one might imagine, there are several signs and symptoms of autism. When a child is first seen by a primary care provider, we start to look for signs of developmental or communication challenges. We observe how your child laughs, looks to you for reassurance, tries to regain your attention during a conversation, points or waves, responds to his or her name, or cries. The American Academy of Pediatrics recommends screening for autism at the 18 and 24 month well child visits. This is most commonly done using the Modified Checklist for Autism in Toddlers, or M-CHAT. A positive screen can indicate the need for further evaluation. It is important to note that a normal screen does not rule out the diagnosis of autism or other developmental disorders. There is an online form of this that can be accessed by anyone at www.m-chat.org.

The treatment of ASD requires a comprehensive approach. Because individuals with ASD have varying degrees of impairment in social and behavioral function, management needs to be tailored to the child’s age and specific needs. The goals are to maximize functioning, move the child toward independence, and improve quality of life. There is increasing evidence that intervention is most effective when initiated as early as possible. A notable treatment approach for those with ASD is applied behavior analysis (ABA), which encourages positive behaviors and discourages negative behaviors to improve a variety of skills. Speech therapy and occupational therapy are often used to target specific deficits as well. While no medication specifically treats autism, medications can be used to treat common coexisting conditions/symptoms, such as hyperactivity, inattention, aggression, anxiety, obsessive-compulsive behaviors, depressive symptoms, and sleep dysfunction. To any parent who has concerns about possible developmental issues, autism, etc. with your child, the best advice I can give is this: Be an advocate for your child. Your concerns should be heard and addressed. Make an appointment with your child’s primary care provider and have an assessment done. Again, the earlier a diagnosis is made, the earlier treatment may be able to be started. I was lucky enough to be able to do so for my children at an earlier than average age. Since beginning to understand the things that they struggle with, it has made every milestone that much more significant. I like to say that my children are not just autistic. They are so much more, with their own strengths and weaknesses. They are children who happen to have autism. They are my world.