Asperger Syndrome Child’s Emotional Wellbeing

If you’re reading this article, chances are your child/student has just been diagnosed with Asperger’s Syndrome (or there’s a possibility they will be!) and you’re searching the internet for any information that may help you make sense of the diagnosis.

I’m fairly certain that you left the Pediatrician’s office with just that one piece of information – "Your child has Asperger’s Syndrome". I’m confident you didn’t receive an information kit containing:
-- In depth explanation of the characteristics of Asperger’s Syndrome;
-- contact details for Asperger’s Syndrome Support groups;
-- claim forms for Disability allowance/payment;
-- list of ASD Support Service Providers e.g. Occupational Therapist;
-- contacts for Respite Services;
-- written recommendation to your child’s school of minimum accommodations required by your child with Asperger’s Syndrome;
-- list of beneficial therapies for Asperger’s Syndrome;
-- dietary requirements of Asperger’s Syndrome;
-- list of proven strategies to reduce meltdown/tantrums;
-- advice on what/how to tell your child.

As parents/teachers of children with Asperger’s Syndrome we are expected to source all this information on our own. And so begins the Asperger’s Syndrome journey – endless hours spent trawling the Internet; reading every book in your local library and filing every piece of information relevant to Asperger’s Syndrome in your head for future reference. Only when you’ve upskilled and become enormously knowledgeable about Asperger’s Syndrome can you finally match up the characteristics of AS with how those characteristics present in your child/student. Once the initial shock and disbelief settles, then you begin negotiating with your child’s school (or parents of the child) over the best support strategies and accommodations to implement to give the AS child the greatest chance of success. This process usually takes somewhere between 10 and 18 months after diagnosis to complete.

We’re so busy upskilling ourselves as parents/teachers that we often overlook the emotional wellbeing of the Asperger’s Syndrome child themselves.

How might that child be feeling after diagnosis? Most children diagnosed with Asperger’s Syndrome suffer a range of emotions, but the stages are very clear:-
-- Scared and confused e.g. "Am I sick? Will I die?"
-- Isolated and alone e.g. "I’m the only person in the world with Asperger’s Syndrome – no-one understands me."
-- Outraged and angry e.g. "Why me?"
-- Relief e.g. "Now I have a reason why I feel like this. I’m not naughty."
-- Denial e.g. "If I try harder I can be just like everyone else."
-- AS knowledge e.g. learning about AS characteristics.
-- Self-recognition e.g. recognising their AS characteristics.
-- Self awareness e.g. which characteristics present challenges to them.
-- Self-acceptance e.g. learning to maximise strengths and minimize weaknesses.

It’s usual for children with Asperger’s Syndrome to take 3-5 years to process these emotions. Only when the child has reached the last stage of ‘awareness/acceptance of self’ can they begin to self-manage and self-advocate. That is, do whatever they have to, and use every support they need, to achieve their fullest potential academically, socially and career-wise.

So what can we, as parents and teachers, do to avoid abandoning our children when they are feeling so emotionally fragile, while we are scrambling about trying to upskill ourselves about Asperger’s Syndrome?

The Ben and His Helmet series of children’s fiction books (for 5-12 yr olds) by Nelle Frances are written especially for children with Asperger’s Syndrome and are designed to help children connect to their thoughts and feelings as they process their Asperger’s Syndrome diagnosis.

The Ben and His Helmet books are stories within a school setting and provide relevant examples of issues that occur in the life of a child with Asperger’s Syndrome, including:-
-- interpreting facial expression
-- sensory sensitivity/overload
-- literal statements
-- social skills
-- anxiety in social situations
-- difficulty with change
-- difference in cognitive processing

Ben displays the characteristics of Asperger’s Syndrome, although the condition isn’t stated anywhere in (or on) the books. Asperger children quickly recognise the similarities of the main character Ben and in making that connection they are no longer alone – their thoughts and feelings are "just like Ben’s". The Ben and His Helmet stories are inter-woven with problem-solving strategies and solutions within the layers of their social stories. The AS reader makes a connection here also…and BINGO…the first step towards self-management begins.

The Ben and His Helmet books also help to increase understanding of Asperger’s Syndrome and creates empathy in the non-AS reader. The stories highlight what we parents/teachers have always known – behavior choices for children with Asperger’s Syndrome are often made by their AS characteristics e.g. sensory sensitivity, not because they are being "naughty".

So, if you’ve just left the pediatricians office and are feeling dazed and inadequate, or if you’re further along in your journey but concerned with the emotional wellbeing of your child with Asperger’s Syndrome - the Ben and His Helmet stories are a simple and effective remedy that will benefit them greatly!