Savvy about Asperger’s
The past decade has been a time of dramatic changes in children’s lives. Everything from technology to politics to family structure has an impact on what childhood has become. Much has changed since the time when kids played stickball in the street and rode their bicycles to their friends’ houses after school. Some of the changes have been positive while some have been negative. One area of drastic change has been the increased incidence and diagnosis of psychological disorders including ADHD, depression, and bipolar disorder.
What is Asperger’s Syndrome?
Asperger's Syndrome is a neurobiological disorder that is part of a group of diagnoses called Autistic Spectrum Disorders. They are known as spectrum disorders because the symptoms appear in different combinations and in varying degrees of severity. These disorders are diagnosed in approximately one in 500 individuals. There are numerous theories that attempt to explain why more and more children are struggling with these disorders. Furthermore, milder cases are being identified more frequently so the incidence of diagnosis is increasing.
Asperger's is not as easily recognizable as Autism, and many children with the syndrome are often misdiagnosed or identified as late as nine or ten years old. What distinguishes Asperger's from Autism is the severity of the symptoms and differences in language acquisition and abilities. Children with Autism experience limited language development while children with Asperger’s develop appropriate language skills.
Children with Asperger’s have difficulty with and may try to avoid social interactions. They develop unusual repetitive behaviors, mannerisms, and obsessions. They struggle to understand social cues such as facial expressions or body language and also experience difficulty demonstrating emotional displays such as empathy. Their speech can be awkward or robotic. They understand what is said to them literally without always grasping the nuances of dialogue. They tend to have rigid personalities and may feel compelled to engage in routines in the attempt to maintain order in their lives. These children have a difficult time adjusting to changes in their environment or schedule and may display unusual sensitivities to sensory stimulation such as to light, smells, sound, or touch.
Symptoms of Asperger’s persist but evolve over the course of time and setting. Early intervention involving special education and social skills training can be very helpful.
Coping with Asperger’s
There is a tremendous amount of literature about the causes of Autistic spectrum disorders and there is a huge network of resources available to parents to learn about when to evaluate and how to treat their children. The question that remains is: what role can extended family members play in helping children cope with these disorders? Aunts who have an appropriate awareness, sensitivity, and patience are in a position to help alter the course of a child’s life – no matter how severe the challenges the child might face.
What parents may ask you for
Parents of children with Asperger’s become “case managers” for their children – coordinating a range of services including special education, support groups, psychiatric treatment, and insurance companies. They often become very protective about preventing their child from being upset or frustrated. These parents may feel overwhelmed with managing these issues. At the same time, they may continue to struggle with their own disappointments in what important milestones they believe their child can achieve. Extended family members can help these parents by offering whatever support the parents ask for including anything from babysitting, to driving a child to appointments, to doing research into their rights within the public school system. The parents of an Asperger’s child may also need you to listen to them talk about their fears and frustrations.
What parents may not ask you for
Aside from what your siblings may ask of you in your role as aunt, you may find that you are needed for things for which no one directly asks. For example, you may discover that your niece or nephew is displaying many signs or symptoms of a disorder that the parents have been unable or unwilling to recognize which require assessment and intervention. Thus it may become your role to sensitively encourage a parent to seek out professional help for the child.
Parents may have difficulty coping with a stigma about a diagnosis and accepting who their child is. In these situations, aunts can be wonderful supports and role models for focusing on the child’s strengths and taking a proactive approach to early intervention for treating the weaknesses. Aunts may be able to help parents set realistic goals so that children can experience feelings of success.
Understanding your niece or nephew
You will best be able to interact with your niece or nephew if you understand his or her particular needs and know what to expect regarding rituals, sensitivities, and obsessions. Speak to the child keeping in mind that he or she will likely need you to be concrete in your communication. Be accepting of the fact that the child will likely not display emotions or engage in eye contact. It can be frustrating to engage with a child with enthusiasm when the child does not outwardly react to your overtures – but remaining calm and persistent is extremely important. Understand that direct social interactions are complicated and difficult for an Asperger’s child. The reactions you see may not well represent the impact you are having.
What to do while together with your niece or nephew
While together with your niece or nephew, you can choose one clearly defined social skill to discuss, role model, and practice. For example, you might decide to teach your niece how to introduce herself to a peer by saying her name and pretending to ask the other child’s name in return. You can take turns identifying a feeling by acting out facial expressions and emotional displays. You can keep an “emotional vocabulary” list that the child has learned. Creative projects with this vocabulary list can follow, including making an “anger thermometer” or “happiness meter” of a range of feelings.
If you bring an understanding of the child together with an ability to focus on his or her strengths and the energy, patience, and positive outlook to work on realistic goals, you will be able to change a child’s life. You can help a child feel good about herself and realize that progress is attainable.