When our son David was first diagnosed with Asperger’s Syndrome, in 1997, our desperation for a cure or solution for his myriad of ‘issues of difference’ led us to rely on medical advice and science to find a solution, without really thinking through the issues.
In our case, the idea of a drug that would give our child a ‘normal’ quality of life while he was at school was a godsend. At that time, all we wanted was something –anything – that would help David deal with the issues he was facing every day.
In David’s case, the drug Dexamphetamine was prescribed to help him stay focused. Dexamphetamine is a psychoactive drug that affects the mind or behaviour. It is a type of amphetamine or stimulant which increases the activity of certain chemicals in the brain. In people with ADHD and Asperger’s, this increase improves their ability to concentrate and focus on tasks. Dexamphetamine can produce physical and psychological dependence. Physical dependence means the body experiences unpleasant side effects if the drug is not taken. Psychological dependence is when a person thinks they need the drug to be able to function properly.
While there is enormous debate about the pros and cons of medications such as Dexamphetamine (or Ritalin which is also often prescribed), for parents at the end of their tether and faced with continued judgement and many opinions about what to do about their child, medication can be the safe and quick solution to dealing with the issues arising from a diagnosis.
In the initial stages, medication did work for David and seemed to calm his disorderly mind. For a period of time he was able to stay focused and it was as if the fog had lifted. Medications such as Dexamphetamine are designed to create a sense of euphoria in the brain. So at first, David seemed to become happier and more relaxed and able to focus on tasks that before the medication would have been very difficult for him complete or even attempt.
However, after a year it became very obvious to us the medication wasn’t working. Although it kept him focused and less distracted, it also made him somebody he was not. He had difficulty sleeping, often suffered from headaches and was always tired. While he appeared less hyperactive, at the same time he was often stressed and angry and difficult to get through to. Quite simply, he wasn’t our son when he was taking it.
During this time, meditation, journaling and my morning exercise walks became crucial tools for me as I struggled continually to find solutions. I believe strongly that if you ask the right question, the right answer will present itself at the right time. I would often ask “What do I need to see here? What do I need to do?” – trusting that when the time was right, the right answers would appear.
On one particular morning, I called David to come for breakfast. I had his medication ready. He walked into the kitchen – one sock on, one sock in his hand and said “Mum, I don’t know what to do next.”
Alarm bells rang loud and clear, this was not working. Something needed to change. It was as if the fog lifted and I could see clearly that we had been looking at this the wrong way.
Asperger’s Syndrome is not a disability, it is difference. David saw the world differently and it was not up to us to make that wrong. In fact it was our role as his parents to understand these differences and allow him to create his own reality with his own set of expectations and capabilities.
I realised that medication was simply not the answer. Although it solved some issues in the short term, it created a buffer for him – like a soft pillow against a hard hit. The buffer also stopped him from experiencing the extremes of emotion – and that was the one thing he actually needed to experience and learn to understand. It is in these extremes that the greatest lessons are actually learnt.
One minute he was up, next minute he was down. Sometimes the medication seemed to work, other times it didn’t. Was this what I truly wanted for my son?
I realised during my ‘light-bulb moment’ that it was our role as David’s parents to accept, acknowledge and grow with his difference; to discover his talents and foster these; to allow his difference to be his strength.
We had to accept our role as David’s primary care-givers; be willing to let go of expectations and accept David as a whole being, different in a world which doesn’t accept differences well; and be willing to change our beliefs, our attitudes and our plans at any point.
This was not our life – this was David’s life. We couldn’t measure his life by what he could not do. Instead we had to focus on what he could bring to the world. This meant constant fostering and encouragement of his interests to find the solutions no-one else would find.
We wanted David to be whole, to become true to himself and truly experience and understand emotion. So it was up to us, as his parents, to ensure we understood our own emotions and modelled the behaviour we wanted David to understand (this realisation leading me to believe that perhaps I should have been the one on medication!)
At the time I wasn’t quite sure if I truly knew what to do next – but one thing I did know for sure was he needed to be whole and he needed to be real. He couldn’t grow, learn, heal, experience and genuinely get in touch with that part of his heart that he didn’t know and didn’t yet understand fully, while he was taking medication.
Children with Asperger’s Syndrome find interaction with others difficult because they have difficulty processing emotions. They cannot read the signs others are sending out. How could David learn about the things he most needed to learn, when he couldn’t make sense of his own thoughts and feelings? Sure, medication was fine for the quick fix, but it wouldn’t help him understand his emotions or his own intuition and sense of what was right for him in the long term.
That was the beginning of the change. Once I made up my mind to look at the situation differently, things began to change. The real David began to emerge and slowly, with great patience and love, understanding and compassion, a truly remarkable young man emerged.