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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


COMMENTS:

•    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.

Please post your comment below…

Is a Formal “Diagnosis” of ASD Helpful or Harmful?

"After researching the info on this site, my husband and I believe our child is on the autism spectrum. I'm all for going to a doctor to have him diagnosed, but my husband is dead set against it because he thinks our son will be discriminated against once he has 'the label'. SO... my question is does a diagnosis cause more harm than good?"

Diagnosis has traditionally been the route by which children with Asperger’s (AS) or High-Functioning Autism (HFA) and their parents have accessed specialist services. But this tradition has grown out of the services for kids on the autism spectrum who were severely disabled by their disorder under all circumstances. The group of children with AS and HFA include those whose social impairment is arguable.

What about the father whose child is diagnosed with AS, and his wife begins to think of her frustrations with her husband during the marriage? Does the husband become socially impaired because he is suspected of having AS? Is a timid father with an eccentric manner who is nevertheless devoted to his wife and youngster socially impaired? Is a loner with a passionate interest in old diesel engines socially impaired?



Checking off the boxes is not sufficient for making a diagnosis. Making a diagnosis has to result in a useful product for the client. There is no hard and fast rule about whether a diagnosis of AS or HFA will be useful. A decision needs to be made in each case, usually following an open discussion about what benefits or costs the client anticipates from a diagnosis. And the situation may change.

An AS or HFA teenager who is facing unemployment because he is acting strangely and whose routines at home are becoming a major source of harassment for his mom and dad, may in a year or two be coping well and happily with another job and be a pleasant (if eccentric) house companion. Although a diagnosis might have been useful on the first occasion, it may be unhelpful on the second.

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

There are many other conditions in medicine that are dimensional and not categorical, and that may dip in and out of the pathologic range (e.g., hypertension). They require a different kind of management. The family physician must remember that his patient had a raised blood pressure once, and that it needs to be checked from time to time without treating the patient as if he or she has a current disorder.

For psychiatric services dealing with people with AS and HFA, this translates into being able to maintain contact with grown-ups with AS and HFA, perhaps over long periods and without specific treatment; or, alternatively, it translates into enabling people with AS and HFA to access services for themselves and giving them the means to decide when it is in their best interest to do so.

People with AS and HFA may need help particularly during developmental transitions and during crises. Specialist psychiatric help may not be needed at these times, although help from someone who is knowledgeable about autism spectrum disorders and comfortable relating to the affected individuals is important. However, there are some crises that call for specialist psychiatric or psychologic help. These include crises associated with psychiatric comorbidity and forensic problems.

AS and HFA can be misdiagnosed as a number of other disorders, leading to medications that are unnecessary – or that worsen behavior! For example, there is much overlap between AS and NLD. Both have symptoms of precocious reading, verbosity, and clumsiness. But, they differ in that kids with AS have restricted interests, repetitive behaviors, and less-typical social interactions. Diagnostic confusion burdens children and their parents and may cause them to seek useless therapies.




Disorders that must be considered in a differential diagnosis include:
  • attention-deficit hyperactivity disorder
  • depression
  • multiple complex developmental disorder
  • nonverbal learning disorder (NLD) 
  • obsessive compulsive disorder
  • other pervasive developmental disorders (e.g., autism, PDD-NOS, childhood disintegrative disorder, Rett disorder)
  • schizophrenia spectrum disorders (e.g., schizophrenia, schizotypal disorder, schizoid personality disorder)
  • semantic pragmatic disorder

Tourette syndrome (TS) should also be considered in differential diagnosis. Other conditions to be considered in the differential diagnosis include:
  • bipolar disorder
  • birth trauma
  • conduct disorder
  • Cornelia De Lange syndrome
  • dyslexia
  • Fahr syndrome
  • fetal alcohol syndrome
  • fragile X syndrome
  • hyperlexia
  • leukodystrophy
  • multiple sclerosis
  • selective mutism
  • stereotypic movement disorder
  • traumatic brain injury
  • Triple X syndrome

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

Diagnosis may be particularly helpful if it results in services provided to the affected child in the area of social skills training. Due to social skills deficits, children with AS and HFA find themselves socially isolated. Reasons for this include, but are not limited to, the following:
  • Chronically frustrated by their repeated failures to engage others and form friendships, some kids on the autism spectrum develop symptoms of a mood disorder that may require treatment.
  • Social skills deficits are largely responsible for the impression of social naiveté and behavioral rigidity that is so forcefully conveyed by these children.
  • The communication style of children with AS and HFA is often characterized by marked verbosity. The youngster may talk incessantly (usually about a favorite subject) often in complete disregard as to whether the listener is interested, engaged, or attempting to interject a comment, or change the subject of conversation. Despite such long-winded monologues, the AS or HFA child may never come to a point or conclusion. Attempts by the listener to elaborate on issues of content or logic, or to shift the interchange to related topics, are often unsuccessful.
  • Their poor intuition and lack of spontaneous adaptation are accompanied by marked reliance on formalistic rules of behavior and rigid social conventions. 
  • There is a lack of contingency in speech that is a result of (a) the one-sided, egocentric conversational style (e.g., unrelenting monologues about the names, codes, and attributes of innumerable TV stations in the country), (b) failure to provide the background for comments and to clearly establish changes in topic, and (c) failure to suppress the vocal output accompanying internal thoughts. 
  • They may be able to describe correctly (in a cognitive and often formalistic fashion) other people's emotions, expected intentions, and social conventions; however, they are unable to act on this knowledge in an intuitive and spontaneous fashion, thus losing the tempo of the interaction. 
  • They may express an interest in friendships, but their wishes are invariably thwarted by their awkward approaches and insensitivity to the other person's feelings, intentions, and nonliteral and implied communications (e.g., signs of boredom, haste to leave, and need for privacy, etc.). 
  • They may react inappropriately to the context of the affective interaction, often conveying a sense of insensitivity, formality, or disregard for the other person's emotional expressions. 
  • They typically approach others, but in an inappropriate or eccentric fashion (e.g., they may engage the listener in one-sided conversation characterized by long-winded, pedantic speech about a favorite, unusual and narrow topic).

Social skills training that would effectively address the issues listed above would suggest that the advantages outweigh any disadvantages of receiving a formal diagnosis.

There are positives and negatives associated with a psychiatric diagnosis – and the diagnostic process generally. Unlike most physical disorders, there is a higher degree of uncertainty attached to a psychiatric diagnosis. The systems of classification that have been developed attempt to reduce this uncertainty, but personal interpretations still play a huge factor. And when a diagnosis is reached, there is the problem of “labeling.”

Labels (i.e., the diagnosis) applied to “special needs” children suggest they are different. To those unfamiliar with autism spectrum disorders, these kids may be viewed as abnormal, making them feel distrustful or anxious? The label itself can result in a self-fulfilling prophecy (i.e., it can result in the child viewing himself as abnormal) and can bias the way parents, teachers, and other adults view the child.

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

In any event, there are times where a diagnosis is helpful, and there may be times when the child or teen is better off without the “label.” The decision to seek a formal diagnosis is ultimately up to parents.

In the case of an adult, the decision should be his or hers alone. Diagnosis as an adult can be a mixed blessing. Some people decide they are O.K. with being self-diagnosed and decide not to ask for a formal diagnosis. However, for those who DO want a formal diagnosis, there may be a variety of benefits.

It’s never a bad idea for an individual to increase self-awareness in order to capitalize on strengths and work around areas of challenge. Knowing about AS or HFA gives the individual an explanation, not an excuse, for why his or her life has taken the twists and turns that it has. What one does with this information at the age of 20, 30 or 70 may differ, but it is still important information to have in many cases.

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

==> How To Prevent Meltdowns and Tantrums In Children 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

==> 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

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

How to Prevent Meltdowns in Children on the Spectrum

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

Parenting Defiant Teens on the Spectrum

Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

Older Teens and Young Adult Children with ASD Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

Parenting Children and Teens with High-Functioning Autism

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

Click here
to read the full article...

Highly Effective Research-Based Parenting Strategies for Children with Asperger's and HFA

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...

My Aspergers Child - Syndicated Content