Medicating a Child for Autism. Part Two: People’s Reactions.

The reactions that people have had to my eight year-old son starting on medication, have been mixed and surprising. I want to start though with the reactions I had expected, based on what I hear very regularly on national radio talk-back shows and through other social media.

Creative commons image

Creative commons image

If talk-back is anything to go by, the decision to place children on medication for issues like anxiety, hyperactivity, aggression etc, are a symptom not of the child’s state but of the parent’s failure on multiple levels. It is treated like a sign that the parent has failed to parent their child adequately to stop these troublesome behaviours emerging in the first place, and furthermore a failure by the parent to seek appropriate remedies to the problems once they exist. But these views are more often than not, a failure in those complaining people to understand the reality and complexity of conditions like autism, and furthermore a failure to appreciate what I addressed in my first post – that deciding to put a child on medication is not a simple effortless decision made on a whim.

There is a sort of nasty busy-bodiness in these attitudes; that these non-professional members of the public are entitled to heap shame and abuse upon parents of children with special needs if those parents dare to follow advice that their child would benefit from medication. It’s cruel, and somewhat bizarre. I also think it stems from a deeply misguided view some have, that parents of children who don’t have special needs have done something right – that when another parent has a child with ADHD, OCD, ASD etc, that it is reinforcement that those without these children were superior parents.

Whatever the driver behind the attacks made on parents who medicate their children – even if it is genuine concern that children are being un-necessarily medicated as a result of lazy parents who want to sedate their children until they dribble in the corner – it is clear that there is a fair bit of ignorance backing those views, and that those views are un-necessarily harming these struggling families.

These views get heard by parents like me, and some of us will internalise them. Some of us will feel shame and misery that we must have failed our children somehow to have reached the point of medicating them. We may worry that we didn’t try enough interventions, or didn’t try hard enough, and that turning to medication is proof of our failures. However, I want to say this to those parents: Do you judge a diabetic for having to use insulin, or a cancer patient for having to use chemo? Do you judge a schizophrenic or someone who is bipolar for taking medication? Autism is a real condition, and our children are often severely affected by it, why should they not also have medication as an option to help them? If medication exists that can help, and we have already tried so many other options, why would you deny your child this extra potential tool?

Because that is what it is – a tool, not a solution. A tool that is used under professional and individualised guidance. Are there side-effects to worry about? Yes, but there are also worries about side-effects of other non-medical interventions, and it is exceedingly rare that any side-effects of medications for ASD can’t be un-done by coming back off the pills. It’s a careful weighing up of pros and cons, and as parents this is just like all the other cost-benefit equations we have to work through in the best-interests of our children.

I was surprised at my own reaction when my son was prescribed medication, I thought I too would feel shame or depression. But I realised I was feeling hope and relief. Not hope and relief because I thought we’d found the answer or this would solve all the problems, rather  because this was a new and promising tool we hadn’t tried yet that might finally make a real and positive difference to those aspects of my son’s life that continued to isolate, restrict and upset him. I trust the judgment of my son’s professional in this field, which is such an important thing. I go into this medication option with eyes open to the potential risks and benefits, and with the support of my family and the professionals. We are in a good position to make this work for my son, and to change tact if it doesn’t. It’s worth a try.

The one member of my extended family that I have openly chatted to about the medication, took the news in without a blink. She listened and nodded and trusted my judgment too. As did the friend I spoke to in person about it as well, I felt no sense of being judged or as if I’d failed my son. That level of support happily surprised me, and made me think more highly of both these women.

But there is one other woman whose reaction surprised me in the bad sense, and not because she judged me as a failure for putting my son on medication, but because she judged herself as a failure in this regard. His teacher is at a mainstream school, so no doubt doesn’t often deal with this issue. She has tried so hard since the start of the school year to help my son thrive, and she has done a fantastic job. She’s been so willing to learn about him and about autism and to work closely with us as a family. It’s been a steep and at-times stressful learning curve, but I thought she was handling it beautifully. Yet in finding out we’d had to turn to medication for some of my son’s behaviours, she became upset and told me she’d been depressed, and tried to figure out what she must have done wrong for this to happen. She thought she had failed our son and our family somehow for him to have reached the point of requiring medication.

When she told me how much it had upset her, I went out of my way to explain we’d been contemplating medication since he was about four years old, that this was not an entirely new topic for us as a family. Yes, some of his behaviours had gotten worse since starting the new classroom and having her as a teacher (and yes she hadn’t noticed some of the behaviours that we had since we don’t have a class of 20 kids to watch everyday), but change is hard for my son at the best of times and she’d done everything we’d asked (and more) to ease the transitions. I tried to explain that sometimes his autistic behaviours are cyclical, that he goes through bad and good patches and we just do our best to problem-solve and help him through. I did my best to ease her worry and reassure her that she is the fantastic caring teacher she really is (and then I gave her an Easter egg to try to cheer her up).

So it is not just parents and families that are needlessly hurt by erroneous public views on medication as evidence of failure, it is also caring individuals like teachers who can get caught up in the blame-game.

Finally, there is one more person’s perspective I have to cover, because it’s the view that matters the most: My son’s. I think it is absolutely critical that where the child can understand adequately, that we make the attempt to communicate the point and hopes and even maybe the risks of the drug. My son understands that the drug he is on is aimed at helping reduce his more troublesome and upsetting behaviours, we’ve told him which ones we’re hoping to reduce and why. He knows some of the risks – that it won’t work, or can have some side-effects – but he trusts his professional and us as his parents to monitor him and the dosage, and to take him off if that’s the best thing for him. He knows “drugs” as a bad word, so he likes us to call them “pills” instead and that is what we do – the language needs to help him feel comfortable and safe.

At one stage he said something about the pills that I think is so insightful and crucial here. My son asked me straight out: “Are you trying to change me?” I smiled and told him “no.” I explained that there is a difference between trying to change behaviours, and trying to change a person. I compared it to many things he can understand, like trying to toilet-train his brother – I’m not trying to change who his brother is, just some of his behaviours. We even had an extended discussion on how we’re not trying to take away his autism either (he sees his great memory and love of truth and knowledge as part of his autism), that we’re just trying to lessen the effect of the not-good parts of autism on his life. We ended up also having a discussion on at what point changing someone’s behaviour might be thought of as trying to change the person themself, where I talked about if I tried to change his interests and his identity and the things he loved by making him act and speak differently about such things, then that would cross a line.

My son asks some amazing questions sometimes, his mind astounds me. I wouldn’t want to change him, I’m not trying to change him, I’m making the best decisions I can as his mother for what is in his best interests. Sometimes, the best options in life include medication. There is no shame in that. There is no joy in that. It is just one more tool, to be used thoughtfully and carefully, particularly when it comes to our children.

So please, next time someone says something disparaging or cruel about parents who “drug-up” their kids, speak out and let them know not only the ignorance in such broad claims, but also the needless hurt and damage such views do to innocent families, teachers and even children. Parents are made to feel shame at contemplating medicating their children, surely we don’t want parents to be making decisions of what is in the best interests of their child based on that shame. We want the decision to be based on the individual child, on science, on reality. Broader debates about whether too many kids are being medicated, by what and for what, should be had within the same framework: Based on reognising individualism, on understanding science, and with an eye to the complexities of reality.

Posted in Medical treatments, Parenting an Autistic Child | Tagged , , , , | 3 Comments

Medicating a Child for Autism. Part One: The Decision.

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.

By subsetsum on Flickr via creative Commons.

By subsetsum on Flickr via creative Commons.

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.

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Autism rates are up? “That’s good!”

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I had the radio on while getting through the morning routine a couple of days back, when a story came on about the increase in autism diagnoses, sitting at about 1 in 68 is the latest figure out of the … Continue reading

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Individualism Disorder

I felt compelled to put this together after recent conversations I’ve had with professionals working with both my somewhat-abnormal children, and getting frustrated with people not recognising that someone can be an individual and have or not have a neurological condition. Similarly someone can have a neurological condition … Continue reading

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Guest Post on the Deeper Meaning of Exclusion

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Today I am honoured to share a guest post by a friend and fellow mother of a child with a disability. Antonia is mother to three children, including Max who has Down syndrome. Antonia’s experience of rejection in non-inclusive school … Continue reading

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Shame on Green Bay High School

I have been following the case of Green Bay High School excluding a student who has Aspergers and other special needs, a case that the school lost in the High Court. The school lost that case for very convincing reasons. … Continue reading

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Stand-down, Suspension, Exclusion, Expulsion; what do they mean and what are your rights?

A reader (and friend) recently asked me what rights someone has in New Zealand when they want to challenge a school’s decision about what to do about a student’s behaviour. In particular, she wanted to know about the processes and … Continue reading

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The “S” Word: Attacking and Defending “Special Needs.”

Lately when I use the term “special needs” – whether in my writing or my speech – I’ve been coming up against people who attack my use of the phrase. The arguments I encounter don’t come from a singular line … Continue reading

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What Rachel Smalley, and the public, doesn’t understand about mainstreaming special needs children.

Today a reader of my blog asked if I’d read a recent article written by Rachel Smalley, up on the Newstalk ZB website. The reader was not happy about what she read there, and having read it myself I also … Continue reading

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Disability Representation on School Boards of Trustees.

Here in New Zealand, legislation and the New Zealand School Trustees Association, (“NZSTA”) both encourage school boards of trustees to be representative of their community. Specifically, they advise that when a school board is seeking to co-opt or appoint new … Continue reading

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