It happened again yesterday. As I was talking to a parent, she said her 11 yr old son who is identified as being on the spectrum was doing very well. He was thriving in a small classroom setting, with individualized instruction, interacted with peers and was happy.
It was his younger brother who was stressing this mother out. He was very social, had friends at school but his anger and behavior at home was overwhelming the family and parenting had become a real challenge.
I hear over and over again that the child with the Asperger profile has settled in, found his or her path,, but now it’s the sibling who requires more attention. The traditional explanation is that the identified Asperger child has occupied the bulk of the parental attention and because of jealousy, envy or lack of attention, the other is acting out. This may be the case in some families but for some siblings I think we have to dive deeper.
As a reminder, researchers now think that over 100 genes contribute to what we now think of as the Asperger profile. These genes relate to a very complex constellation of traits which interact with each other and are heavily influenced by environment. An individual’s presentation is further determined by their personality and developmental stage.
While the number of attributes that make up a Asperger profile is vast, varied, and complex, to receive a diagnosis, an individual needs to demonstrate challenges in a number of key areas, especially the area of social communication, often considered the hallmark of an autism diagnosis. This means that someone with many, but not the “essential” diagnostic attributes can go unrecognized. They not be neurotypical. They may have many of the sames difficulties as someone on the autism spectrum, however these challenges can be hidden. This can explain struggling siblings of children on the autism spectrum.
There are two primary ways that we see this play out. First, there are families where a child has the profile required for a spectrum diagnosis, but because they look so different from their sibling who is identified as being on the autism spectrum the parents never even consider the diagnosis. Many of of these children find work arounds for their challenges so that their difficulties are less obvious. Often, but not always, the “missed” siblings are girls who (research shows) are able to camouflage their struggles — they create a social facade and avoid detection. The downside is that camouflaging is exhausting and can take a tremendous toll on mood and behaviour.
The second scenario that we often see at AANE is that of siblings who are very social, leaders, creative, highly focused, outgoing, smart, athletic, often driven. They certainly don’t meet the criteria for an autism diagnosis since they do not have the core social communication difficulties.
Despite the outward appearances and achievements of these children, their lives can be in turmoil beneath the surface. We often see this becoming apparent in early adolescence and in college. The characteristic I see most often in these siblings is high anxiety and mood dysregulation. We also see eating disorders, trouble sleeping, feelings of being overwhelmed, trouble planning and following through, and sensory issues.
So you might be thinking, “What do I do as a parent?” There are certainly concrete ways that you can help your child who does not have a diagnosis:
Consider getting an evaluation for the sibling to identify their unique learning style, strengths, and challenges.
Understand and parent these children through the neurodiverse lens. Consider that your child (without a diagnosis) might be experiencing the world in an atypical way. Assess whether you need to: provide more time for your child to de-stress, change your expectations, attend to the environment, create clearer communication channels, address the school environment, and/or make fewer demands.
Each child is an individual and your parenting style needs to be flexible to accommodate the unique needs each. Trust your instincts. As a parent, you know the needs of your children better than anyone else. But I would suggest, if you have one child identified as being on the spectrum you should be sure to use that neurodiverse lens when trying to understand your other children. I hope that these suggestions help to broaden your
perspective on your family and provide concrete tools for you to put into practice in order to help your whole family thrive.
Thank you for listening. I would love to hear your thoughts and experiences. My email is Dania.Jekel@aane.org.