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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31 Responses to Medicating a Child for Autism. Part One: The Decision.

  1. Elizabeth says:

    Fantastic! This is a beautiful resource for all parents facing the possibility of medication for their children with Autism. I am looking forward to the next post.

  2. Lori says:

    Zero judgement.. Learn so much from others 🙂

  3. Great post! There are lots of complexities in this area and you are doing a great job of expressing it through your writing! I look forward to reading the next post!!

  4. Dearna says:

    Congratulations on writing about this. We made the decision to give our son meds to help manage his ADHD. It was such a difficult decision to make. Personally I felt like I had failed him. I had put so much effort into getting people to accept him for who he was and this decision made me feel like I was trying to change him. I sat in my car and cried when I filled the first prescription. No one makes this decision lightly and you deserve to be supported in it.

    • Thanks you so much sharing that Dearna, I’ve wrestled with similar emotions and confusion. It can be a complex area, emotionally and in practice too. I think it’s important to hear from families and individuals who have been through this before, and offer each other support because this is never easy. The comments I’ve received here so far have been so kind and supportive, it means a lot. Wishing your family the best.

  5. No one knows your child better than you do. There is no other child exactly like yours. No other parent has had the experiences you have had with your son. No one has a child with the same history of interventions your child has had. I believe that it is your right and your decision as to whether you choose to try medication. No one else has the right to tell you what to do. Thank you for empowering other parents who are facing similar issues. Bravo!

  6. Mitch says:

    We had terrible experience with Abilify, if anyone is considering that. Risperadone has been better.

    • Hi Mitch, thanks for sharing your personal experience. There is constant research into what works, how much, for who, and for what symptoms; one drug can work wonders for a child, while it causes bad effects for another, while doing nothing for a third. We are fortunate to have a very knowledgable and well-respected professional guiding our son’s medication, and we trust her knowledge of both our son and the latest research into medication for children on the spectrum. For what it’s worth though, the medication my son has been put on is neither risperadone or abilify.

  7. JON JONZZ says:

    before that try giving the kids THC many have found it to be a wonderful alternative to the harsh drugs

    • Jon, I’m sure you understand why that is a poor idea when it comes to children, especially autistic children, when no matter what medication they are put on it should always be done under the professional guidance of an expert. If you can find a medical professional to oversee the dosage, delivery method, side-effects, and who has access to studies done on autistic children taking it, then it may indeed be a sensible alternative to be determined alongside other alternatives. I have written an entire post on the issue of marijuana and autism symptoms, that you may find more relevant than this post which is specifically about professionally prescribed medications. That post can be found here: https://autismandoughtisms.wordpress.com/2011/07/19/marijuana-for-autism-are-you-out-of-your-mind-would-you-like-to-be/

      • Brad Schafer says:

        CBD has been shown to calm the activity of the brain for many different disorders but functions best in the presence of THC, this is one area that does need additional research. I would feel much better about giving my child a natural substance than a man made drug if it can be proven to be effective.

  8. Xeonaut says:

    Thank you for your insight into the decision making process….A decision we are struggling with now for our 9 year old son. He is so bright, yet struggles so. Many behaviors are caused by his difficulty with speech…He is hard to understand and so people ignore what he is saying. Then we get aggression or SIB. I am so afraid of the side effects. Please let us know how your son is doing.

    • Thank you for sharing your situation Xeonaut, I’m sorry you’re having a hard time with your son and with this important decision, and I completely understand both. Because of the level of interest in this post, I do think I will write a third one specifically about how my son has reacted to taking the pills in a physical, mental and emotional sense, but that would have to be when they actually have an impact on him which will be further down the line when the drug builds up in his system. You may find the second post quite interesting and relevant too, where I will talk about the reactions we (and others, including my son) went through on starting the medication, I’ll write it within the next couple of days. Wishing your family the best.

  9. grahamta says:

    Not judging here. Whenever I do, it kicks me in the ass later. I hope it will help.

  10. russell brown says:

    We had to make a similar decision some years ago, on our son’s behalf. He subsequently managed himself off the medication (an SSRI), but I don’t think we had much choice at the time. His long-term well-being was at stake.

    • It’s such a hard judgment call for so many, but as you say there are times when the decision is a lot easier because the situation is dire or no other real options exist. Thanks for sharing your family’s experience Russell.

      • russell brown says:

        By the same token, we actively resisted the person in Group Special Education who wanted to put him on anti-psychotics as a means of keeping him in school. We knew that was completely inappropriate for him. It concerns me that other parents might not have been so able to tell his GSE caseworker (who didn’t understand autism at all from what I could tell) to back the hell off. She had quite a number of bad ideas and lied to us and undermined us. Years later, I’m still angry — and concerned that she’s working in the system.

        • There are a lot of people currently working in the sector who are under-trained, untrained, or clearly in the wrong line of work. Every so often we hit a real jewel of a person and hold on to them and their positive influence in our son’s life as long as we can, other times I find myself filing official complaint letters or actively working to limit the impact of the individual on my son’s life. You’re quite right that it takes a certain type of person to be able to stand up to these workers, and many fear they’ll lose services or lack the knowledge and strength to stand up to them. I used to not speak out in fear of losing services, and twice I have been threatened with just that for complaining, but both times I asserted myself or I went above the person’s head to a supervisor and ended up with a good outcome. It still left me shaking afterwards though, I’m not as good with conflict as I should be or need to be. Just one more of the extra hurdles we all face as families of children with special needs, that goes unappreciated and unaddressed, there really needs to be better support system set up to help families negotiate and advocate their way through the disability sector. This reminds me of a recent situation I’ve had to help a friend with too, I may have to write a post on this topic to explore it further. Thanks for commenting.

  11. skg917 says:

    Best wishes; my thoughts and support are with you!

  12. Michael says:

    I thank you for sharing this, I have a 3 year old son who may or may not have autism. The doctors have not come out and said one way or the other,He has gone through alot of testing so far and still has more to go through. They have him going to school 4 days a week to help him with the things he is lacking for someone his age, Which is mostly speech and behavior. Which has helped to a point. There has been talk of medicating him, but no action has been taking on that. Which when i first heard that it really freaked me out.Really looking forward to your next post.

    • Thanks for sharing Michael, I hope you enjoy the second post which is now up on my blog, and I wish you all the best with your son, it sounds like you and him are going through a lot of change and learning right now.

  13. Shoab Kamran says:

    My son was diagnosed as autistic at age 2.5 years. After which we had all types of checks, tests and treatments done with no cure. Even at Stanford University he was part of a study only around the age of 3. But, when he became an adult, most psychiatrists and institutions declined to even see him. Over the years, he has been having different medications for curtailing some of the behaviors and many have had side effects causing further deterioration or additional behavior problems. We even brought him home from the group home for the DAN (Defeat Autism Now) treatment as it has very severe discipline on diet and homeopathic medications. That was in 2006 done for almost a year but with not much improvement. We went back to continue just the normal medications through Kaiser Permanente after that. He is at a very low level of normal behavior and communication (uses single words for some physical things) though he has a photographic observation and memory and remembers stuff from years ago like the way to the stores he used to go to, etc. He, from baby age, had a very keen sense of smell and started with soaps and after shaves that were handy. But, later it turned to perfumes and soap and now once a week he still goes shopping (the only physical activity that excites him now a days) for the expensive perfumes, soaps and candies that he likes the smell of. He has or creates new OCD rituals every now and then. The only useful things he learned are not by going to special schools in the US but during 3 years of one to one tutoring done when I was assigned to Bahrain (Middle East) for 4 years. He was about 7 years old then. This New Zealander lady who had accompanied her airlines controller husband on assignment there was doing her Masters work on studying two autistic twins in NZ before she came. She would come to our home and get Mustafa from the front and go to the back servant quarters where one room was made into his classroom. She was great and taught him to recognize and pronounce all English alphabets phonetically. She taught him to write his first name in capital letters that he still does weekly on his IHSS time sheet. She taught him how to answer some of the questions like “What is Your Name?”. Also, it was a 10 bungalows compound with swimming pools and tennis courts. She also taught him how to ride a bicycle as well as swimming. I do not know what more he could have learned as the lady went back to NZ and we returned to the US in 1988. While shopping in stores once he picks up a bottle of perfume or soap etc. to smell, he always puts it back the way it was set on the shelf. He even taught me to put perfume bottles back in the cover box the way they came in originally.

    I understand that Germany has a program now that employs ASD adults, but my son has to be happy doing it. May be he should be packing perfume bottles for some perfume company.

    My autistic son has a two year older brother and one ten years younger brother. I am 70 year old and the thought of his survival is always on the back of my mind when I am gone. He gets along okay with his brothers and mother and abides by more than me on what they tell him to do. But, he likes me to be around to do his bidding as I understand mostly what he wants or would like at most times. After trying many group homes and day programs where he was never happy, he is back home and I having retired by now look after him mostly as he wants me around mostly.

  14. chrggrl says:

    This does capture pretty succinctly, how difficult and sometimes bewildering it is to get to a point of medication. We were also reluctant to go down this path. At home, he seemed quite capable; but the problems he was having with his peers at school had to be recognized too. The medication has made a big difference in even a short time for him. I can’t say I am pleased that it took medication, but I am grateful that he seems to have a better chance now. We are monitoring. Good luck to your family!

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