Who’s suffering?

Recently, I have joined the long list of parents of autistic children who have to consider whether or not to medicate their child with psychotropic medications. Psychotropic medications alter chemical levels in the brain and impact on mood and behaviour. These medications have brand names like Prozac, Lovan, Ritalin, Adderall, Concerta, Risperdal and others. Many autistic children are prescribed one or more of these medications to assist with co-occuring diagnoses such as ADHD, anxiety, depression and OCD, as well as to manage ‘symptoms’ of autism.

Reputable studies from the USA, UK and Australia all show a significant increase in the prescription of psychotropic medications to children in the last 5 years. Data is available that shows that these medicines are being prescribed to children as young as 18 months old. This is despite the fact that the US Food and Drug Administration (FDA) and the Australian Therapeutic Goods Administration (TGA) do not endorse many of these drugs for use in children under 7. Treating professionals can prescribe these despite the lack of endorsement, by doing so ‘off label’. This is legal.

Long term studies on the effects of prescribing psychotropic medications to children are not available. This means there is no reliable data on the long term effects of chemically altering a growing brain. Several short term studies have found minimal side effects and a statistically significant improvement in mood and behaviour. One larger study of Fluoxetine (Lovan, Prozac) found that the height and weight of children on psychotropic medications for a period of 19 weeks was adversely affected (the children grew 1.1cm less and weighed 1 kg less than the group not taking the medication). According to the agency who conducted this study, “the clinical significance of this observation on long-term growth is unknown.”

Long term studies of adult populations taking psychotropic medications are available. Findings show both a range of positive health effects and negative health effects, some very serious. Anecdotally, the Internet is full of stories of people sharing that these medicines saved them or broke them. The range of experiences is wide.

Many parents report that these medications have significantly benefited their young children. They say their children are happier, more settled, sleeping better, more able to focus at school and less ‘aggressive’. They report that they are ‘easier to manage’ and that family life is ‘less stressful now’. Other parents share that the medications didn’t do much to help at all or caused side effects that were too severe to keep going with the medication.

Making sense of all of this is extremely difficult for any parent facing this decision. How do you weigh up the potential benefits versus the potential costs, when there is no long term data available? How do you grapple with the issue of giving your child something that may help them or may hurt them?

This is where our family is at right now. We’ve read the research. We’ve questioned the professionals. We’ve asked friends with experience with this issue. The result of all of this is that we have funneled down to what we believe is the central question – Is our son suffering?

This question is not at all straight forward. Being human means that we all experience some degree of suffering. A world of ever-happy never-sad people would be a strange one indeed. Periods of feeling sad, anxious or angry are not outside the realm of ‘normal’, even for very young children, and accepting this as individuals and as a society could be a step in the right direction towards embracing the full range of human emotions.

Some of us suffer more. Some of us suffer so much that we take our own lives. Determining another’s level of suffering is not an easy thing to do.

Our boy is not yet 5, so asking him questions about the intensity of his feelings does not produce answers we can rely on for a decision of this magnitude. His sadness looks intense to us. His anxiety stops him from leaving the house, we think. His worries seem to us to inhibit his ability to try new experiences. His stomach aches may be a sign that he is so anxious that his stomach is in knots. His intense separation anxiety that is always present could be because he is overly anxious about us not coming back. His vocal and motor tics seem to us to be connected to feelings of fear and anxiety.

Or maybe not.

Maybe being autistic means he wants to stay inside in his comfort zone for weeks on end, only to emerge in short bursts to try new activities. Maybe his set point for expressing happiness is different to others and he’s naturally melancholic. Maybe he doesn’t want us to leave because we are his anchors to a world that is too intense for him. Maybe his tics are a natural function of his neurology. Maybe this is all a normal and natural part of his autistic neurology.

As parents, it could be that he becomes easier to live with, more compliant and less reactive as a result of medication. This may ease our ‘suffering’. But it doesn’t address the question of his suffering. It would be all too easy to give him the magic pills and hope for a smoother ride for all of us.

I look to the future and imagine a 16 year old accusing us of medicating him from a very young age. I imagine that he may think that we were unable to accept him and accommodate him as his natural autistic self.

I look to the future and imagine a 16 year old accusing us of not medicating him and leaving him with a childhood of suffering.

We have no way of knowing which of these future imaginings might become real.

We have a decision to make. One that we take very seriously. One that for us, requires that we have explored every other option available before considering psychotropic medications, if we ever do.

So we will sit with the question of suffering for a time. We will watch and feel and listen and wait. We will try to tease apart the boundaries of acceptance, to understand what it means at its fullest level and how this impacts on decisions to medicate young children or not.

I feel for any family facing this decision. Especially in a world that sees autism as a terrible deficit and a heavy burden. I feel for any young child, who is relying on those that love them to make the right decision at the right time.


3 replies
  1. Paula
    Paula says:

    Great blog Leia. Your little guy has wonderful parents in you. Not an easy decision at all. I hope you are able to find a certain sense of peace with whatever you decide.


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