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But I don’t want my child to have Autism…

May 3, 2024 | Autism

In my career as a psychologist, I have conservatively assessed and diagnosed over 400 children with autism. I do the majority of my work as a team member in an autism diagnostic center associated with a major medical center. When we give parents the diagnosis of autism spectrum disorder, I have heard many questions and responses from parents, but I have never once heard a parent reply, “But I don’t want my child to have autism.” This is a deeply felt yet deeply private feeling. It is acknowledged only with ambivalence, as if to say there is something about my child I want to reject. Can I truly accept my child for everything they are? Can I accept my child for everything they may not be? Accepting the imperfect child is a journey which can make the rest of us grow as people.

As with any developmental diagnosis, hearing the words “Your child has…” evokes a range of emotions in parents. Some parents take a very direct, problem-focused approach, “OK, let’s deal with this, what’s the next step?” Other parents are overwhelmed by feelings of loss, worry, and sadness. Whatever the expressed nature of the response, it is safe to assume that all parents undergo a process of adjustment which can include changed expectations for the life and future of their child and some degree of worry about the logistics and finances of raising a child with autism.

In most cases, the process of parenting a child with autism involves a pivot point when the parent suspects something is different with their child. This can be a delay in speech or language development. It can be missed milestones such as limited or no eye contact, no social smile or constant irritability. For others, there seems to be typical development but suddenly something changes. Development stops or skills are lost for no apparent reason. Well baby visits with the pediatrician can lead to a formal autism evaluation. We can now conduct autism evaluations with children as young as 18 months, although age two or older is more usual. If a parent is concerned about the development of their baby, we suggest not wait until the next well baby visit. A one-year delay in a proper diagnosis is an avoidable mistake. Early identification and treatment are essential.

The emotional impact of addressing these problems is palpable. In some families, mother and father may disagree about the need for an assessment and/or treatment. Extended family members sometimes speak up with their own opinions. The family may face a situation of discord, confusion, and uncertainty. This is the time when mother and father need to sit down with an autism professional and piece by piece evaluate the situation. The best professional to do this is someone with expertise in both typical development as well as variations found within the autism spectrum. Developmental pediatricians and pediatric psychologists are generally those best trained and experienced in providing this type of service to families. Candid and detailed discussions with a professional can sort out the complexity of their child’s development. Even well-prepared families benefit from guidance. As professionals, we intervene in the best interest of the child, which includes taking care of parents as they traverse uncharted lands.

Each family has a unique journey. There are mountains of details to take care of, finances to work out, and schedules to manage. Life goes on, and a child with autism eventually blends into the day-to-day rhythm of family life. Children with autism can be joyful and bring joy to others, but in unexpected ways. They see the world differently. When we take the time to look, we see the specialness of their perspective. Can you imagine knowing the flags of 108 countries? Or having the drive to learn to communicate without words? Or being brutally honest when someone makes a mistake? There are children who have very complicated manifestations of autism. Even they, if one carefully looks, have a unique perspective on life. Taken in the right frame of mind, the insight and behavior people with autism bring to the world are perspectives which the rest of us might learn from. We can learn from our children with autism how to make, not just passively expect, a joyous life, how to see the world in a more precise way, and how to be more open and honest with ourselves.

I hope I’ve made it clear that people with autism are not imperfect. Instead, they shine a light on the imperfectness of the rest of us. They make us be more tolerant, more kind, more resilient, and more creative in the way we solve problems. They make us understand what love and bonding all is about. No, I have never heard a parent say, “But I don’t want my child to have autism.” What I have heard, countless times, is “My child is a gift.”

Dr Bill Bloom

Bill Bloom, PhD, LP

Clinical Director

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Blog Posts Tags: Autism | Autism Testing
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