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.

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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.

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

  1. Wife of Jack says:

    These two recent posts are rather timely for our family! We have decided to start a trial of anti-anxiety drugs in two months time. It has never seemed a viable option for us so far but now it is. Up until now we have managed our son in our own way, muddling a long and observing him and his behaviours. The Doctor seems to think it’s time to start talking seriously about it, before it was an option that might be available in the future if we felt it necessary. Fortunately our SENCO and his teacher will be behind us and assure us that if these drugs work it will be obvious within a week or two. Alternatively if they don’t work it will be easy to tell. The SENCO was once quite skeptical as well but has observed some great success stories.

    I was very suspicious and cautious from my own experiences with these sorts of drugs, living with symptoms but never really knowing if the drugs were doing anything, it was all very subtle. I hope for our son it will be an obvious change that we all can observe and document.

    At six, yes he is young but if we can lower his anxiety about the curriculum in the classroom then hopefully these negative feelings about trying new skills at home and school will not become entrenched. If we left it later to start it might we might have missed a valuable window and end up with a boy who hates school. He loves school but has a deep seated anxious response to many little challenges that crop up every day.

    • Kiri says:

      We took this option for our daughter when she was the same age and terrified of being in a classroom. The medication helped her to calm down enough for us to work on the alternative interventions — behavioural therapy, relaxation techniques, self advocacy, etc. After six months, she was coping well enough for us to start weaning her off the meds. At the time we were fortunate to have a supportive school environment, which I consider absolutely necessary for any interventions to work. I hope everything works out for you.

  2. This post is a timely read for me. My 8 year old just took dose 4 of a medication to ease the anxiety. He is on a 6 month waiting list for testing. As a special education teacher, I am cautiously open-minded about medicating children as I have seen it go many ways. I was told today that medication won’t help because my child is spoiled…I have seen characteristics of asd in my child since he was around 3. We just dealt with it-plan ahead, accommodate sensory needs, etc. I didn’t even consider medication until the anxiety started interfering with school (heightened anxiety during divorce). Thank you for sharing your experiences… AoA

  3. Catherine says:

    We have been down your path and are about to go there again so I really do understand where you are coming from. We tried two different medications to help with our daughters ADD part of her Autism, I thought, ‘we can give it a go, I don’t want to deprive her of something that would really help her if it works’. One didn’t work at all, and the other one worked well for six months and then stopped working. I was just very careful who I told, because of public ignorance. Soon we will be trying one for anxiety, since she has gotten to the Tweens the anxiety levels have gone through the roof. She won’t even go to a family trip we planned to Wellington because she is scared of there being an earthquake the one day we are there! People who do not live with these type of conditions have no idea what so ever. It’s like those who think people on antidepressants need to ‘get over it’, ignorant.

  4. Crystal says:

    Last year when I spoke to my daughter’s doctor about her issues, we took the “wait and see” approach, which is what we had been doing for several years. It wasn’t until last fall, when her anxiety got so bad, that her hair started falling out, and she lost 13 pounds, that the wait and see was over, we needed something more. She’s on her 3rd week of anti anxiety meds, and I’ve seen so many positive changes in her behavior. This week we will start therapy so she can learn how to deal with the anxiety. Love your posts! I’m not anti medication, but I was very leery going in, and asked a lot of questions. Luckily we have a great doctor who went over several different meds, and together we chose the one we thought would be best for our daughter. Now that the meds are in her system, hopefully she will be more open to what she learns in therapy.

  5. Kiri says:

    No-one who reads your posts could possibly doubt your dedication to and love for your son. I believe that most people who care for children with special needs are better parents than those that don’t. We have to be.

    As for the smug parents, if anyone criticizes how I am raising my child, I give a heartfelt sigh and say: “Yes, you’re right. I’m so overwhelmed. Perhaps you could help me by taking care of her for a few hours a week.” I find the critics melt away mumbling excuses.

  6. Rachel says:

    Absolutely true, as an adult with autism I take anti anxiety medication and one of my two sons (Jeremy) takes melatonin. Jeremy is so thrilled to be able to go off to sleep much easier (previously it took him hours). I blogged the details of the decision to trial melatonin with Jeremy and all the behavioural steps we tried first. I expect that one or both of my sons may require anti anxiety medication in the future based on my lifelong experience with anxiety (if they don’t then lucky them) and I will not be feeling any guilt for not considering it (of course helping them to reduce anxiety via other means as well). Thanks for speaking out about this.

  7. Elizabeth says:

    Great post! I agree wholeheartedly with this assessment: “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.”

    I have been bewildered by this for years, and I think it stems from latent superstition or religious concepts of good luck for good behavior and bad luck for bad behavior. Having a child on the spectrum is bad luck, therefore the parent must be bad. Very weird. Thank you for pulling the thought out from under the rock and exposing it to the light of day.

  8. Sheogorath says:

    As an Autistic person, I disagree with the desicion to place someone on medications only for their Autism. If the meds are necessary to treat concomitant conditions as in your son’s case, however, then I see no problem with that and believe people should think before they comment.

  9. Rachel says:

    I’m all for appropriately prescribed medication. I’m not on the spectrum (I take prescribed meds for my ADD), but my husband and children are. My husband’s anxiety has gotten so bad over the past few years (which exacerbated his depression), and the SSRIs he was on stopped working. He’s been through a whole lot of antidepressants and anxiolytics. We do have a great psychiatrist, but sometimes I think the pharmaceutical industry falls short. Too many of the anti anxiety medications available have problematic side effects like brain fog (not good for a programmer). It’s been a really long road finding something that works… or at least takes the edge off his debilitating anxiety. I honestly wish more research was being done on compounds like phenibut or picamilon for anxiety in individuals on the spectrum. They don’t seem to have the huge list of problematic side effects, and they’re short acting (essentially a GABA molecule bound to niacin or a phenyl ring to allow the GABA to cross the blood brain barrier – regular GABA supplements are excreted through urine and never even make it to the brain). They’re not a magic cure, and the effect is mild (I think taking a larger dose for a more pronounced effect would be a BAD idea) but they usually help my husband *if* we try our best to lessen the situational factors adding to his stress and anxiety.

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