The AMAZING Siblings of Patients with Autism

siblingAt the Child Development Center of America, it is our custom to request that parents bring the patient’s neurotypical siblings. Staff and interns can learn to appreciate the differences. I get a sense of the challenges faced by the children who are affected. An added bonus has been our observation that some of the most heroic family members are child’s brothers and sisters.

It never ceases to amaze me that even the youngest sibling will play with, fight with, endure – and teach – their affected friend. There is no correction, no repetition, and no prompting. It’s true love – even if they take each other’s stuff.

Brothers and sisters demonstrate patience and perception about the other’s wants and needs. It is a constant reminder of the important role these sometimes forgotten family members play in the affected child’s development. Their maturity frequently exceeds their chronological age.

One parent recently provided this beautiful essay written by the 11 year-old sister of a very affected patient, who has only recently begun to seek and interact with others and with his environment. Without being asked, here is what Jillie wrote:

jillie-barton   An autistic kid’s brain is like a computer keyboard. A keyboard has a chip that sends signals to the other keys. A fixed one sends a message to the keyed it gets there. When you press the key a letter appears on the screen.
  But a broken one doesn’t. The chip sends a message down the right route. But the right route isn’t working right, so the message tries to find another way.
   But the message doesn’t get there. So when you hit the key nothing happens.
   It’s sort of like an autistic kid’s brain. the brain sends a message down the nervous system. But the route isn’t working correctly. So the message tries to find a new way. But sometimes it works.

Discussion
Siblings of children with autism are the subject of a number of scientific studies. Twenty years ago, one paper described, “Sibling encounters provide a unique opportunity for such children to learn about social relationships.”

A decade ago, another study demonstrated …”strong and positive changes in joint attention and modest changes in social behavior for the latter…” but lamented, “however, the results did not provide strong evidence for generalization of increased social interactions to different settings.” Who cares? A buddy is a buddy. Another paper that year, Teaching Pretend Play Skills concluded, “… the child with autism may benefit from sibling-oriented interventions

In 2007, Sibling Interaction of Children with Autism: Development Over 12 Months showed, “… social interaction and imitation in children with autism and the special role that sibling interactions can play.”

Literature describing family challenges followed. One study summarized, “When siblings were dissatisfied with differential parenting, quality of the sibling relationship was compromised.” Another concluded, “treatment programs may need to address parental stress, which in turn will help optimize treatment outcome for the child and the family.” In Siblings of individuals with an autism spectrum disorder, the authors wrote, “Adolescents engaged in more shared activities and reported more positive affect in their sibling relationship when their sibling with ASD had fewer behavior problems… For adults, more shared activities were observed when the sibling with ASD was younger in age and had fewer behavior problems; greater positive affect in sibling relationships was predicted by greater parental support.

This year, several papers arrive at similar conclusions involving, “contradiction. Participants recognized difficulties (decreased parental attention, extra responsibility, bothersome behaviors, communication difficulties) and positive aspects (became empathetic, loved and appreciated the child, realized the experience was life-changing) of living with a young person with ASD. Younger siblings frequently reflected on childhood experiences, wished they could play together… Adolescent siblings learned life lessons from the experience, talked about life changes when ASD was diagnosed, and seemed introspective and protective toward the young person with ASD. Male siblings often wished they played more often while growing up with the young person, and frequently mentioned the child/adolescent’s aggressive behaviors; female siblings focused on relationship and communication difficulties of the young person ASD.”

Conclusion
Brothers and sisters get it. Preteen Jillie gets it! Her description of processing difficulties is spot on. Perhaps, one day, it will be the sibling of an affected child who will make the key discoveries for effective remediation of the signs and symptoms displayed in Autism Spectrum Disorder.

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