My eight year-old son has recently begun taking medication aimed at easing some of his autism symptoms. This decision was a hard one, reached only after many years. It is also a controversial and widely misunderstood decision.
I’m going to do two posts about medicating a child for autism. The first – this one – is about the complexity of the decision. The second will be about people’s various (and surprising) reactions to the decision.
There are at least five variants at play in making the decision on whether to medicate a child for their autism – it is not a simple or quick decision, and neither should it be. What I’m going to list is based on my own observations and experiences – you may be aware of other variants I haven’t considered, please share them with me in the comments.
The first is of course the child itself. There is no single “drug for autism:” If a child has autism, that doesn’t mean they require medication. The drugs that may help autism symptoms depend on the symptoms; are you medicating to address violence, OCD behaviours, anxiety, depression? And does the child have co-morbid conditions that are going to be relevant to what drugs are suitable or unsuitable? How old is the child? Have the symptoms reached a point where their impact on the child is severe enough to require looking into medication, and do the severity of the symptoms you are addressing out-weigh the risks that come with taking medication (the side-effects). There is of course also the way the child’s own brain and body reacts to the medication once it has been started; the decision to start taking a drug is never the end point, there is a need for ongoing monitoring of impact, changing dose, removing the child from the medication for short time periods or permanently, etc. There is nothing straight-forward about this, and that’s only the first variant.
The second is the family’s own preferences. Even if the child would or would not benefit from medication, a family that is very strongly in favour of or against medication is going to necessarily have an impact on what drugs (if any) are given to the child. A family that is turned down by own physician when asking to have their child put on medication, may deliberately seek out another doctor who is free-er with the prescription pad. Which brings us to the third variant.
The doctor. Doctors have their own experiences, knowledge, training, and may or may not keep themselves up to date with the latest research on drugs that can assist autism symptoms. The doctor’s preferences have a strong impact on what options are available to a family. Furthermore, a doctor who highlights side-effects and a lack of research on using medication for autism symptoms on children, is going to differently impact on a family’s decision on whether to medicate their child, than a doctor who paints the drug in the light of hope and relief. Of course a doctor’s personal preferences are also impacted on by the society in which they operate, which is the next variant.
The society and country within which the child lives, has a huge impact on the decision of whether to medicate. Some countries have very specific guidelines on best practice for medicating autistic children, some countries subsidize specific drugs of choice, some countries have a free public health system that makes it easier to access, or only have private health insurance schemes that make accessing drugs impossible for some even if the family and doctor wanted it to happen. The attitudes within that country – society’s views on whether medicating an autistic child is acceptable or abhorrent – shapes the way a government and health system operate. For example, some think you can just “talk” the autism away, which brings me around to variant five.
Non-medical alternative interventions. The decision on whether to medicate a child to assist them with their autism symptoms, is made alongside a consideration of what alternatives are available, what has already being tried, and what can yet be done. Despite what the majority of the public seems to think, medication is not the “easy” option. In our case at least, we have already done years of a large variety of intensive interventions that had nothing to do with drugs, and starting our son on medication is happening alongside an extension of those interventions, not alongside a removal of them. The decision to medicate has been made in light of what else is working or not working, and how urgent the need is to remedy the impact of the symptoms on his daily life; sometimes drugs can calm a mind and body enough so that other interventions that were not making much head-way, will have a better chance of future success.
In our situation, the decision to medicate is a reluctant and very controlled one. Our son starts on a very small dose, closely monitored by family, teachers and professionals, before the dose is slowly increased if necessary. Any changes in behaviour or physiology is noted and taken into consideration. We have been informed of potential side-effects and what to do if they occur. Our son will only be on the medication for about six months, by which stage we hope the other interventions we are introducing will have helped calm him enough that the medication will no longer be necessary, and we will take him off the drug slowly – again under professional guidance – and monitor the impact of its removal too. And yet on a piece of paper and on any statistic chart, all you’d see is the notification that our child has been put on medication for his autism, and that simple statement is what we as a family will get judged on – the various factors that lead up to the decision can’t be captured in a number.
The attitudes of others – and even the surprising emotional response I had to my son going on medication – will make up my next post.