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Children on the Autism Spectrum and "Medication Phobia"

"Our daughter (autistic) is suppose to take 2 meds everyday, but always has a meltdown whenever we try to give them to her. She is so afraid of the side effects that she can’t put her anxiety aside long enough to take them. Is this common? What can we do? She has to take these two prescriptions according to the doc."

While lack of awareness by parents and their Asperger’s (high-functioning autistic) child of adverse drug reactions can have serious consequences, having a phobia of medications can also have serious harmful effects on the child’s health (e.g., problems with medication compliance, refusal of necessary drug intervention, etc.).

Medication phobia can also present in moms and dads who are concerned about giving medications to their youngster, fearing that the medications will do more harm than good.

Fears of taking medication is prevalent in children who have experienced unpleasant withdrawal effects from psychotropic drugs. Also, medication phobia can be triggered by unpleasant adverse reactions to drugs that are prescribed inappropriately or at excessive doses. Furthermore, due to sensory sensitivities, many children on the autism spectrum have great difficulty with – and a fear of – swallowing pills.

The nature of Asperger’s and high-functioning autism (HFA) introduces significant challenges, particularly when using drug treatments. Building a relationship and gaining the child's trust can be hard to accomplish. Many young people on the autism spectrum feel forced to take medication and commonly recoil from the idea of drug treatment. Some are so frightened of the effects of medications that they can’t put those fears aside long enough to try one.

 A real paradox occurs in the area of anxiety. Many, if not most, children on the spectrum experience anxiety. However, the degree of anxiety that makes it appropriate to consider medication for it can also interfere with the child adhering to a prescription. Despite the enormous distress the child’s anxiety symptoms generate, he or she may not be able to put aside worries about the medication. Parents may be the only people the child will allow to counter these fears.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

Many of the difficulties associated with anxiety (e.g., behavioral problems) are more distressing to those around the child (e.g., parents, siblings, teachers, etc.) than to the child herself. Children with Asperger’s and HFA commonly lack the ability to perceive the signals of comfort or pleasure of others or, once acquired, to use others' emotions to guide their behaviors. Lacking this ability, these children struggle with the initial fears related to taking medication or entering into other therapy that can help them get along with others. Often they can’t see why they should be required to take a particular drug simply because others are upset. Threatening an unpleasant consequence is usually ineffective. These “special needs” kids are often willing to accept dreadful consequences rather than compromise a rigidly held rule, contain a pressing urge, tackle managing an anxious feeling, or yield control to someone else.

Another hurdle is the limitations children with Asperger’s and HFA have in identifying their own internal mood states and emotions. As a result, parents, teachers and other adults may be unable to gauge whether the child experiences less subjective anxiety, anger, or sadness. The child's emotional “comfort” may not be available to the therapist for rating improvement. To monitor progress, the therapist may have to draw on multiple observations, rely more or less exclusively on the child's somatic experience, and to use highly concrete measures.

An associated obstacle is the deficits children on the autism spectrum have perceiving and understanding other's intentions, wishes, or needs. This blindness to others often contributes to the child’s inability to grasp how his reactions contribute to a bad result. More often, the child believes he is being victimized. The teasing and bullying that the Asperger’s or HFA child often has to endure at school only adds to this. For this child, it may be impossible to tell the difference between (a) the natural consequences associated with his choices and (b) mistreatment by others. Nonetheless, the child is likely to be oblivious to how his actions contribute to a chain of events that end in a meltdown, outburst or aggression – or even to believe that the outcome should be prevented in the future. This blindness also produces a tendency for the child to accuse those around him of causing problems. Faulting others is highly characteristic and is a direct result of the disorder.

Many children with Asperger’s and HFA display profound weaknesses in the ability to observe sequences of events and transactions accurately, and in understanding the “logical” responses of those around them. These kids can be highly concrete. The “big picture” of behaviors and emotions is often lost to an excessive attention to small changes in circumstances or minor details. They often have a flawed sense of proportion (e.g., premeditated, forceful retaliation may be viewed as a justified response to someone else's small gaffe).

In addition, kids on the autism spectrum often are rigid in their behaviors with inflexible routines, dedication to unnecessary rules, or ritualized behaviors. Sometimes these may be no more than a minor irritation to others, but when severe, they can obstruct action and exasperate those around them. Severe rigidity can be highly frustrating to others, and attempts to counter it may produce aggressive reactions from the child. She may perceive that “if only my parents would let me do what I want,” there would be no problems at all.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

Several other obstacles are related to the issue of medication:

1. No drug influences the core pragmatic social deficits (e.g., misinterpreting cues, failure to appreciate social cues and nuances, etc.). As a result, there is no one algorithm to follow that targets the primary source of impairment or the greatest source of difficulty for the Asperger’s child.

2. There is an absence of high quality, valid studies of the efficacy of different drugs for specific symptoms in this population. Most of the studies are case reports or small-scale, open, unblinded trials. This requires the clinician to take findings from studies of other disorders in the hope that the results translate to Asperger’s. This presumption is entirely theoretic at this point. Much of the time, a clinician has no way to gauge the child’s response in comparison with others with this disorder. Global functioning may or may not be meaningfully improved.

3. A third obstacle is the absence of treatment and outcome studies of Asperger’s with comorbid conditions. For instance, it may be erroneous to presume that mood dysregulation and the response to mood stabilizers in the context of Asperger’s is identical to bipolar disorder in an otherwise ordinary teenager. Nearly all treatment studies of other childhood disorders exclude children with PDD spectrum disorders. As a result, when an Asperger’s child appears in the clinician's consulting room, unless one has the luxury of a previous relationship and a sense of that child's baseline functioning, one can’t know what the child looks like when the comorbid condition is “resolved.” Most of the core social impairments are likely to remain, although functional gains are possible.

Treatment of Medication Phobia—

Treatments for medication phobia can be approached from several different angles. For example:
  • Practicing relaxation techniques (e.g., deep breathing, yoga, muscle relaxation, etc.) can help the Asperger’s child deal with the emotional and physical symptoms of medication phobia.
  • Learning to keep negative thoughts at bay is helpful, because a negative train of thought can initiate the medication phobia. 
  • If choking while taking medicine is the child’s fear, then the physician can give options for liquid or crushed medicines. 
  • Children with medication phobias can learn self-help methods to deal with the worst of the symptoms. Getting informed about the phobia is the first step in overcoming the fear.
  • Cognitive-behavioral therapy, more commonly known as exposure therapy, may be the best approach for dealing with medication phobia. Using the exposure therapy method slowly exposes the child with his phobia first through the mind in therapy sessions, and then in real life situations. Depending on the severity of the case, therapy can help the child cope with his fear and get his health back on track.

Being afraid of taking medicine - or of suffering adverse reactions - is not uncommon for children on the autism spectrum. However, by utilizing the treatment methods listed above, parents can help their child gain a comfort level such that taking prescribed medication is perceived as a rather harmless endeavor.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism


•    Anonymous said…  I have a 7 year old who won't take medicine. I hope he can learn over the years ✨🙏🏼✨
•    Anonymous said…  Mine wouldn't take any meds until he could take a pill (this included antibiotics). He would actually throw up on me if I forced them. I had to be really creative in hiding the meds in foods and drinks. I taught him to swallow pills using mini m&m's when he was 4. Now he takes a daily medication with ease.
•    Anonymous said…  My daughter is 15 and takes meds really well now. She knows if she doesn't take those meds her actions are bad and she has withdrawals. I would talk to a doc and see if anything liquid or other possibilities are available
•    Anonymous said… Carbonation helps to float the tablet in their mouth. It is how I had to teach one of my kids to swallow a pill. She could not do it with regular water and still cannot. We practiced with Tic Tac's a lot.
•    Anonymous said… Dispersible tabs here and a capsule emptied into water every single morning. No way he'd ever swallow tablets. And his melatonin drops have to be made up without flavouring......
•    Anonymous said… Fascinating reading everybody's comments about swallowing. My son cannot swallow any form of tablet. Puts it on his tongue and then just freezes and panics. Interesting that so many of you have the same issue. Another thing I have learnt today.
•    Anonymous said… His OT worked with him on swallowing 'pills', mini MM's and regular size cut in half. Now he Can swallow the small gel oval shaped laxatives, but doesn't want to. Currently he is applying DoTerra Oils himself.
•    Anonymous said… I can't even get my son to take melatonin. I hide it in chocolate milk. He had eye surgery and it took 3 of us to hold him down just to get the woozy meds in to him, which he then spit half of it out and in to the nurse. He was 5 then, he's 8 now.
•    Anonymous said… I have a 12 year old who won't take medicine.
•    Anonymous said… Mine doesn't take medication. I think it's only kids with Adhd that are medicated isn't it? Or kids with excessive stimming?
•    Anonymous said… Mine is afraid to swallow the capsules. I break them open over a spoon of yogurt and he eagerky takes them. He says they allow him to stop and think.
•    Anonymous said… My 16 year old Aspie takes only brufen willingly. No tablets . Antibiotics only yellow one for kids. Thank God she hasn`t needed anything else so far.
•    Anonymous said… My daughter (8 1/2 yrs old ) refuses to take tablet form she thinks she going to choke and will not let u put it in her mouth so we always get liquid which she takes no problem.
•    Anonymous said… My daughter is the absolute worse at taking medicine. I am very thankful we do not have daily meds and that she is very healthy.
•    Anonymous said… My son (7.5 YO) has epilepsy medicine, and he hated the liquid form, but we slowly introduced the pill form instead. It was by a process of putting pill taking in the daily routine, and making sure it was accompanied with a nice drink, i.e. apple juice or milkshake, and occasionally some bribery, i.e. a toy car, a Lego figure, that he now takes it with very little fuss. Routine and patience were rewarded.
•    Anonymous said… My son hates taking his- luckily we get capsules and can mix it into his breakfast drink. He hates taking it but he told me as long as I don't see you putting it into my drink it's fine.
•    Anonymous said… My son is afraid of gagging. We have to break open the capsule and he swallows the beads, but occasionally he will gag and throw up all the medicine. That's his Ritalin. He doesn't have an issue with his seizure medicine that is an orally disintegrating tablet. He likes the minty flavor also.
•    Anonymous said… My son isn't afraid to take his but he doesn't like it. And he will occasionally refuse to take it when he's mad at me, as though he's punishing me. But he's been pretty good about it the last few years.
•    Anonymous said… My son refuses to take medication- terrified what it might to him
•    Anonymous said… My two aspie kids will NOT take meds. They are both horrible with meds. We have to hold them down to give them anything
•    Anonymous said… No afraid to take it but complained because he only liked the circle ones not the oval ones. Something about the circle ones go down better than the oval ones. I had his doctor explain to him that he needed to take them regardless off shape or color and that seemed to work.
•    Anonymous said… Oh wow!! Our very recently diagnosed 6 year had his tonsils out a fortnight ago. We had medication battles every two hours!! Thankfully he is better today and it's all over. We had no idea that this was common to HFA kids!!!
•    Anonymous said… Terrified of any and all meds - yes yes yes - so is his dad.
•    Anonymous said… Will not swallow a pill. Chews his Guanfacine. My friend is a pharmacist and is looking into compounding for him
•    Anonymous said… Yep! It's a nightly battle. This week the doctor told us to just hide it.
•    Anonymous said… Yes he is very dubious. Its quite a process. It takes lots if talking. Spoon was best we found, syringe a bit scary. And we just give it in small amounts with sips of water in between until dose taken.
•    Anonymous said… Yes my son would try really hard to take it. He found it very difficult. When he was about 9 I put $2 on the container which he could have if he got a tablet down. He did it for the first time with food and since then it's been a lot easier
•    Anonymous said… YES! We have tried EVERYTHING to mix it with. The only thing that sometimes works is offering Pokemon cards (it's his thing right now). We put them in sealed envelopes which he has decorated. Then we make it a big deal "Which one will you choose?" thing. Sometimes we just can't get him to take it. We used to have two of us hold him down but then when he was willing to take it, he would want to "play" that he wouldn't and ask us to hold him down.
•    Anonymous said… Yes, he refuses all medications.
•    Anonymous said… Yes, I have struggled the past 3 years for my now 17 year old to take his required Thyroid medication. He claims he has a fear of swallowing and chocking on it. Even if we crush it. Very frustrating. I have tried mixing it in food, but he always knows, he is 17 after all.;-) We have therpists coming twice a week to work with him on this, and he does great for about a month, than he stops taking it again. Trying to figure out what more he fears about this medication, sadly, he can't function without it as he sleeps 24/7 when he doesn't take the meds. And yes, he flat out refuses it. He has learned over the years to just answer "I will take it later on my time" to get us off of his back. And later never happens.
•    Anonymous said… Yes. My 8 yr old boy was scared to take anxiety meds. Luckily it came in a liquid (and he didn't mind the taste) and I explained that I take meds too. So we take them together. That seemed to get him past it.

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