Different people react differently to their child receiving a diagnosis of Asperger’s Syndrome or Autism Spectrum Disorder (note: the disorder previously defined as Asperger’s Syndrome is now classified as part of the autism spectrum). For some, the news is scary and seems to hold the threat of a difficult life that may never be normal, additional obstacles, and continuing difficulties. For others, the news might be something of a relief: understanding the cause of the difficulties experienced by the child, and knowing that other people are experiencing the same thing, can help tremendously. There are many places where parents and children can go to seek support and information to be able to learn how best to work with the diagnosis. After receiving the diagnosis, here are some of the next steps you may want to consider.
Understand the Diagnosis. Not everyone with Asperger’s Syndrome exhibits exactly the same symptoms, but there are trends which are used in diagnosis. Understanding these trends can help you to anticipate what to expect, but it can also help you to take note of whether your child has any behaviours that don’t seem to be explained by Asperger’s Syndrome, or whether there are any other reasons that you may want to seek a second medical opinion. Difficulty understanding facial expressions, body language, and metaphorical language are common, as are an extreme and focused interest in a particular subject, difficulty adjusting to changes in routine, and high sensory sensitivity. “It must be emphasised that none of the diagnostic characteristics of Asperger’s syndrome are unique and it is unusual to find a child who has a severe expression of every characteristic,” explains Tony Attwood, author of Asperger’s Syndrome: A Guide for Parents and Professionals.
It can be helpful to understand how Asperger’s Syndrome differs from other disorders, and what other symptoms commonly co-occur with Asperger’s. For example, according to a study conducted at Kings College London, “high rates of anxiety disorders, particularly obsessive-compulsive disorder (OCD), are reported in people with Autism spectrum disorders (ASD)”. People with OCD have “compulsions or obsessions that cannot be controlled without help”, explains PsychGuides.com, which can be quite similar to the need for ritual and order common among people with Asperger’s Syndrome, but has distinct characteristics, such as obsessive thoughts that cannot be shaken from the brain except by completing certain rituals – these obsessive thoughts are not characteristic of Asperger’s Syndrome. Knowing the symptoms of Asperger’s Syndrome may help you to notice if your child is exhibiting symptoms of another disorder, which may lead you to seek an additional diagnosis, or seek a second opinion to revise the initial diagnosis of Asperger’s Syndrome.
At this stage, many people debate whether or not to tell the child about the diagnosis, especially for younger children. Sue Larkey, author, autism spectrum specialist and teacher, recommends that you do so. Often the child may experience the same relief as the parent, and may often become more engaged and proactive in managing their day-to-day life and experiences.
Seek Local Support. For those parents who are concerned or scared by the diagnosis of Asperger’s Syndrome, seeking support and help is essential. This may be in the form of finding a local or online support group such as the Cloud 9 Children’s Foundation in Wellington, or if you live elsewhere, a local Meetup group or a group registered with the Global and Regional Asperger Syndrome Partnership (GRASP), which exists to “improve and enrich the lives of adolescents and adults on the autism spectrum, and their families”. Even for parents who are happy with the diagnosis, seeking a support group can be an important experience, since connecting and exchanging ideas with other parents can be both fun and productive, helping you to better understand your child and how to work with them effectively. For the child, connecting with other people of the same age with Asperger’s Syndrome is hugely important, providing the opportunity to forge connections with other people who share the same experiences and perhaps even the same interests. Your local health facilities should also be able to provide you with information on local resources.
Establish Strategies. One of the most important steps in working with a diagnosis of Asperger’s Syndrome is establishing effective strategies for everyday living. For example, if your child has difficulty remembering every step to be taken while in the shower, print out a list of steps to follow, laminate it, and stick it up in the bathroom. Discuss with your child what each step should be, since steps which may seem so obvious to you that you forget to articulate them may need to go on the list, such as removing clothes before showering. Setting up schedules and timers to indicate when an activity will happen, and for how long, can help to reduce distress and disorientation, says Sue Larkey: “[schedules and timers] help answer many of the questions these children have: What is happening? What order? What time? What is next? How long?” Some creative thinking may be needed to work out strategies for the difficulties unique to your child and family, which is another area where the brainstorming-friendly environment of a support group can be extremely helpful.
Perhaps most important of all: reach out. Reach out to your child, your partner, your other children, your family, your friends, your child’s teachers, and other people in the same position, whether they are online-only friends or in your neighbourhood. Involving people in helping you and your child will not only ease your burden, but will also help to educate more people about Asperger’s Syndrome and Autism Spectrum Disorder.
With thanks to Jenni Felton for this contribution