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Autism and Medication Hell

NP Med HellBy Natalie Palumbo

I am 18, a senior in high school, and the only sibling of an older brother with low-verbal autism.  I recently read an article in which Dr. Hyla Class discussed certain neurological drugs, their troubling side effects, and their relationship to violent behavior. Dr. Class also discussed the disturbing trend of individuals committing violent and homicidal acts while taking these medications.  Some had even received dose increases shortly before their acts of violence were carried out.  More troubling is the reluctance to acknowledge or study this alarming trend. 

Throughout my life, I watched my parents try many different medicines for my brother.  They were trying to reduce his OCD, echolalia, or restless behavior and hoping to increase his focus and language development.  The medications either failed immediately, or had no effect.  Only one partially helped, but eventually failed.  Most meds were a horrible disaster that made Anthony’s problems worse.  We nicknamed Anthony Mr. 1%....if there was a 1% chance of experiencing an opposite reaction, that’s what we would see.  For example, if we gave Anthony a medicine to help his obsessive compulsive disorder, he would become even more OCD to the point that it was unbearable.  My parents tried each of the following at one time or another…Cylert, Ritalin, Dexedrine, Adderal, Prozac, Paxil, Anafranil, Depakote, Zoloft, Wellbutrin, Strattera, and Seroquel …all failed.  Many of the meds increased the problems they were hoping to make better.  My mom gave up on meds for six years because they made Anthony extremely difficult to handle.  Although Anthony was loud and somewhat restless, he was always sweet and gentle.  The meds made Anthony irritable, oppositional, overstimulated, and aggressive.  I could tell when a med was failing by my mother’s reaction.  She was naturally patient and had no problem remaining calm…unless Anthony was being difficult on purpose.  In that case, I would hear her struggling to keep a sweet voice while managing him. 

When Anthony was 12, mom reluctantly decided to try meds again.  Anthony’s echolalia was so constant and loud, it was interfering with school.  Even if Anthony could do the work, he couldn’t be quiet long enough to participate, and he was disturbing others.  We all thought Anthony might gain more language if he could “turn off the TV talk”.  Since Anthony’s echolalia was more typical of Tourette syndrome, my parents thought a med for vocal tics might work.  My brother was prescribed Abilify for his incessant echolalia.  After 3 days, Anthony suffered a Palsy reaction.  His middle school teacher called saying Anthony was ‘limping’.  When my mom and I picked him up, half his body was limp like he had a stroke.  The doctor said to give Anthony liquid Benadryl immediately and bring him in.  They said an emergency room would take too long…the Palsy reaction could be permanent if not treated right away.  This terrified my mother, who didn’t have the time to explain to me fully what was so urgent.  The Benadryl worked quickly, and Anthony was fine.  Seeing my parents’ panic was very frightening for me, especially since I was only 9 at the time.  I was too young to understand how serious the situation was, but old enough to know something terrible was happening and was truly afraid.  After that, things got crazier.  Our family moved twice in the next 3 years because of my dad’s job.  Therapy for Anthony was interrupted. 

We finally settled when Anthony was 15, and I was 12.  My parents found a good doctor thanks to Anthony’s new high school teacher.   Anthony started taking Topamax.  The doctor felt that increased blood flow to Anthony’s brain would reduce vocal tics.  The best meds for that were in the same family as Abilify, and were not an option after his palsy reaction.  Topamax was the second choice.  Anthony still echoed…a lot…but overall seemed better.  He seemed more connected and cognitive, and better able to formulate language.  Anthony seemed to understand more direction sometimes, too.  However, Anthony seemed more sensory, and we all saw more self-stim behavior.  After a few years, the self-stim behavior started to outweigh the benefits we saw.  My mom kept trying to change the dose times and amounts trying to find a good balance, but none of these changes seemed to work.  My mom would always ask for my opinion.  Anthony related best to me, so she felt my opinion was best.  I was getting increasingly unhappy.  Anthony didn’t relate to me like he used to.  He seemed to want me to be audience to his self stim behavior, but did not want any interaction.  He stopped playing video games WITH me, and wanted me to passively watch as he reenacted something over and over again.  As Anthony got older, this medication started to make Anthony more aggressive towards imaginary characters.  The most irritating problem was Anthony’s early evening anger jags.  He would rant and rave nonstop for several hours.  It was painful to listen to.  His target would be a specific videogame or cartoon character.  He would play a battle video game to self-stim instead of just playing.  He would play the computer, name it after the character, set its power low while his was high, and beat this character for hours.  It was awful.  You couldn’t stop it either.  If we took the game away, the echoing would start.  He would simply scream at the character minus the game.  My mom thought it was med rebound, so we tried dosing changes.  She thought it could be food, so we altered diet.  There was an endless parade of vitamins and supplements.  While those helped us stay healthy, they did nothing to lessen the echoing, stimming, and the all night screaming.  Because of this, I cannot stand games like MarioKart and Super Smash Brothers.  Anthony would spend HOURS beating up Donkey Kong with the volume blaring.  Dad made the games “disappear” thankfully.  Anthony still asks for these games fairly regularly, but I’ve made it very clear that I don’t want Anthony to ever have these games again.  Thankfully, my parents listen to me. 

My mom and dad wanted my opinion about Anthony and Topamax.  I felt Topamax was no longer Ant  Nat Playing Gameshelping him.  I couldn’t interact with him anymore.  I could only be an audience for his OCD behavior.  I missed playful Anthony.  We used to play videogames together, and watch “Cartoon Cartoon Friday”.  Anthony couldn’t watch scheduled programming anymore…he HAD to control what we watched, and it was same thing over and over again…I couldn’t stand it anymore.  My mom was sad to give up on Topamax.  It was the only med that sort of helped, and now it was failing.   The long evenings of screaming at invisible characters were too much for all of us.  We all agreed the benefits of Topamax seemed to be over.  We tried some other meds after that, but they all made him worse…just like when he was little.  The last straw was Anthony having a sudden melt-down at State Fair.  My mom struggled to calm him down and get us to the car.  People were staring, and I stood quietly in tears.  We gave up on neurological meds after that. 

My mom decided to focus on family medical history, and tried to imagine how that might present on someone with autism.  Anthony now takes meds for reflux and insulin resistance.  He is much calmer now, and he is actually playing games with me again and watching new shows on Netflix.  Autism clouds everything, but Anthony is affected by family history just like I am.  I am insulin resistant too.  My mom often asks me about how I am feeling on the meds so she can observe Anthony’s reaction.  Anthony is unable to give detailed descriptions of how he feels…we generally have to guess.  He can only give short answers like ‘hurt, pain, good, bad, yes, no or better’.  My favorite Anthonyism is when he says a food is “ too healthy,” which means he is full. 

Ant Blues Brother And SisterI believe some medicines can be beneficial, but they need to be closely monitored.  Many can cause serious problems as in the case of my brother.  The only times Anthony was aggressive and screaming was on medication.  Changes in diet seemed better for both of us.  I think neurological meds are overprescribed.  I can remember being at the lunch table in middle school, and all the kids were talking about the meds they were on.  A few were on several at once.  I was shocked that I was the only one at the lunch table that wasn’t on neuro-meds. 

I don’t see anything wrong with trying to improve symptoms with medication, as long as the doctors are listening.  I think too little time is spent evaluating kids with autism.  There is a rush to generalize symptoms, and prescribe a medication.  Diet, metabolism, family history, and plain common sense are ignored.  My mom once tried to have Anthony tested for food allergy because he had a persistent skin rash.  The allergist was indignant.  “I don’t believe food allergy affects behavior” the doctor arrogantly told my father.  The doctor then proceeded to brag about the world renowned so-and-so she had studied under.  My dad responded, “My son has a persistent skin rash and we want to make sure it isn’t from food.  Your education has no value to me if you can’t make yourself beneficial…so here’s five bucks, go wash my car.”  (I love my dad!)  Why is it so hard to find a medicine that actually works?  Maybe the answer is in the question.  Is anyone really listening? 

Natalie Palumbo is Contributing Editor to Age of Autism.

Comments

Terry Ott

My 17 year old son is medicine free as I have tried different ones over the years for a brief time but I never saw a difference so I discontinued them. He has a charming personality when he is calm and happy. However, he has some bad days when he inflicts pain to himself and it's hard to watch. I've told his story to numerous doctors and they all agree he is smart but still prescribe the the wrong medicines in my opinion. I research them and usually my son does not have any of the symptoms that the medicine is trying to help with???? I've come to the conclusion that medicine is not a "fix all" especially with Autism!!! Some doctors are so clueless they have written him prescriptions and hardly talked to him for five minutes 😩 So I agree with "no one is listening" and I refuse to allow them to manipulate me or my son with their quick fix that only brings on more problems.

Lola Johnson Rosales

Wow! I will say each of you who've written in have given me more hope today for my 17 yr old son with low verbal and severe Autism. I have Omega multi in my pantry and will check the 3 and 9 strength on the bottle. BCBA's, Special Ed teachers, respite workers, I know they want to help but really they don't live with the increasing challenges everyday of raising a family member with Autism.
Kudos to the younger sister who wrote this original post. I admire your strength, perseverance, and dedication to helping make improvements in your brothers life. This hasn't been an easy feat for you throughout your years. I know it's difficult and I am sorry for the rough patches in the roads. Hope all is uphill and easier for you from this day forward. My son's younger twin has Aspergers and is verbal. He gets frustrated throughout the day and communicates to his brother when the stimming, echolalia and sensory "pinching" behavior is pissing him off. Ongoing battles I wish I could eliminate from our lives once and for all. Where is that cure all for Autism when we need it most? CRISPR, google it for curing Autism. Hey it's a start at least. Mixed opinions from people being pessimistic saying that it cures Autism, dementia and Alzheimers only in lab mice. SO WHAT!! I say it's showing promise and the prognosis will be even better.

Vanita

What a scary condition!! The medical community needs to find a way to treat this condition! I honestly feel that individuals with autism should be able to go into the community and have dinner and do other activities. At the same time, I don't think that it's not fair to subject other people to their aggression and disruptive behaviors!! I am not trying to be negative or rude! This is just how I feel! This population can be dangerous when having a melt down! I am realy not trying to offend any of you with children that have this condition!!

Vicki LeBlanc

Natalie, I have a son 23 years old completely non verbal. Autism diagnosed at 22 months. We have also been on the medication roller coaster for the last five years. We had the same Parodoxical effects of drugs as your brother. Just had genetic testing done, my son has a MTHFR mutation, come to find out this is very common, and the body cannot process folic acid correctly. By taking the processed folic acid "Deplin" it help your meds work correctly. Some patients are able to reduce their meds. This has been the first thing that has shown promise in five years. It is considered medical food, has to be prescribed by a doctor. Read about it, Dr. lynch has good info on-line. There will always be challenges, but it feel like this is the first thing that has shown promise.
Good luck to you and your family!

Julie Gunn

We as parents of children that have Autism know how difficult our days can be. But we will never know how hard It Is for our kids to get through their days will we. I have 1 older Son and a Daughter that is younger than our 17 yr who has Autism. I tell our other two children that It could have been them that had the Autism, It's beyond their comprehension though they will never fully understand the life their Brother leads. My heart breaks a little every day for ourvSon and the life he will not have. Not being able to go on a date, not learning to drive a vehicle, not getting married & having kids of his own. But their Is a lot my Son has taught me abought life, He has a great sense of humour, a great personality and a great big lovable Heart. I believe that God puts the parents with the kids that have Autism In our lives for a reason, to teach us to be loving and caring people.

Thanks for letting me share these thoughts, Julie. G

Julie Gunn

My Son Ryan is 17yrs old I wonder about the medical merry go round that the phycologist suggest for our young adults. Yes we need to be able to handle them when they have aggressive behaivor. But we also want them to have a somewhat normal life and not be in a medicated fog. If these Doctors had a child with Autism I believe they would try a lot harder to get It right with the medications to be on them or not to be. My Aunt knows about a girl that was taking meds for Autism she was reevaluated at Devos Children's Hospital in GrandRapids MI and she was taken off of the meds and she Is doing great. Am I saying that this Is the right approach for every case No I'm not. But I'm really considering that IT would be a good thing to have our Son evaluated about his meds, we as the Parents should be the number 1 advocates for our kids. Thanks, Julie G

Diane

My son is 21 this month. He has severe autism and has been on many medications. He has SIB and aggression; seems like migraines. No neurologist will see him because of the autism. He has developed TD. What can I do?

Sandra Jones

I ran across this while researching autism. Being new to the autism family I want to find all information I can in order to help my grandson. Your story helps to confirm a deep seated belief that the medical community is doing much more harm than good. They have discovered many vaccines and medications for all types of illnesses but at what expense? No one can say what causes autism so how can they say with absolute certainty that the vaccines, antibiotics etc, aren't the underlying cause. Are there any adults out there with children on the spectrum who took ritalan or other behavior altering meds as children? Did any of you have bad reactions to childhood vaccinations? Could that be the cause?

ANGUS FILES

Just observe you can do nothing they would like us all to believe ..dumb us down...loads is being done and we all fight on...for cures,compensation whatever but justice is the main one for us...

Lindy Schultz

I forgot to mention that my son became severely autistic at age 18 months within 1 week of his vaccinations. He lost what speech he had left at age 3 after a tetanus shot.

Lindy Schultz

My son who will be 22 in March has always had the same effects from prescription meds and actually developed severe, disabling tics , diagnosed as the most severe case of Tourette's this particular neurologist had ever seen...after being on one of these psychotropic drugs for a short time. This was when he was 17. He is still disabled by these tics. I wish he were only Autistic, at least he was making slow steady progress then. He has been at a standstill, even losing some ability. Looking back and after doing some research, I realized that the same drug may have been responsible for the extreme Prompt dependent-ness he developed as well. He was prompt dependent before the tics developed, but was on the same med... 2 years in between. He became prompt dependent at age 15. After doing research I found that this particular drug, that helps many children, has a possible permanent side effect of "movement disorders". It could possibly damage the frontal lobe. He is still prompt dependent as well as suffering from uncontrollable tics sometimes keeping him awake all night long. My son also had adverse effects from Dexadrine, at age 5 requiring an emergency room trip And a shot of Valium. chloral Hydrate did not have the desired effect on him at age 22 months, attempting a brain stem auditory evoked response, etc. I now rely ONLY on natural remedies for my son, he can't afford any more setbacks.

 Anne McElroy Dachel

More proof of the pathetic response of the medical community to the autism disaster. We have no answers---but we have a drug for you.

Anne Dachel, Media editor: Age of Autism

Rhonda Spellman

Natalie,

This is a really amazing article. You have a heart bigger than Texas! Anthony sounds a lot like my son used to be until we discovered how to heal his immune system. He went from special education classes (and non-verbal) to gifted and talented classes (and very verbal) with the steps we took.

No one listened to us either. 18 doctors told us "Don't get your hopes up." I share our story in my 3rd book titled 'The Journey Home from Autism' and give an outline with my article, 'Our Autism Story' on my website, AutismWithRhonda (dot) com. Perhaps the steps we took will give you and others hope.

Keep writing. You are a gifted writer. I would like to interview you for my column, Beyond the Spectrum. The first interview just went up this week on my website and on SleuthJournal (dot) com. I will soon be hosted by Welldamentals (dot) com.

All the best,
~Rhonda

cmo

Natalie, Well written as always.

With the age of your brother, he certainly would have received the full load of mercury with his vaccines starting at the day of birth with the hep b shot.

Most doctors only want to choose between various rates and combinations of the medications you listed. Only the parents try to find out what the real medical issues are... which might solve part of the problem.

Marlene

Discovered a magic bullet 14 years ago. Efalex. Worked great for many including my low-mod ASD son, echolalia turned to full conversations. Self abuse stopped. Social skills developed. Countless gains in one week! But word got out. Product disappeared. Banned??? It has returned but the formula has changed! No longer contains Borage oil, (omega 9). I don't know if the new stuff works as well, or at all. You could try the new Efalex, and buy borage oil separately. My son also started eating eating healthy food including salmon after using this supplement. He was 4 years old then.. 18 now and graduated, he seems almost normal, classed high function now. Look for essential fatty acids formula that has omega 3,6 and 9. Omega 3 must be greater amount. Omega 6 is an antagonist, so little is needed. Omega 9 is obscure, but I think that was the magic bullet. Good luck!

Laura

My son is just like you brother. Most prescription meds of any sort make him very ill. More ill than he was when he started. We never did psychiatric drugs of any kind, which is good because they are mitochondrial disruptors and we found out several years later that my son has mito dysfunction.

Natalie, just asking, has your brother ever been tested for mitochondrial dysfunction or autoantibodies to folate? My son has both and treating them has nearly recovered him from autism and made him much healthier.

Best of luck to you and your family!

Adriana

“My son has a persistent skin rash and we want to make sure it isn’t from food. Your education has no value to me if you can’t makTe yourself beneficial…so here’s five bucks, go wash my car.” I think the rest of us love your dad too.

Great point at the end about the "magic bullet" search. Maybe the question is the issue. It causes a great deal of pain to read about cases of vaccine-induced acute disseminated encephalomylitis when the connection was caught early on MRI and treated with IVIG before it progressed to autism. The "bullet" must be shown to address the underlying problem. IVIG might have helped my children had anyone bothered to look for ADEM when they first became ill. But our story is sadly typical-- no doctor looked. Prevention would have helped my children even more of course.

Probably the only magic involved with discovering treatments for underlying specific injuries and bringing about prevention might be the day the medical establishment admits the injuries happened to begin with, maybe through the miracle of human conscience. That hasn't happened yet but I think posts like this urge it along. Thank you.

Nikki - Dysfunctional Dose

Hi Natalie,
What a great post! I want to start by saying how impressed I am with you. You made me laugh and cry all in the same paragraph. I cracked up when you shared your favorite Anthonyism because my daughter tell people to "brush their teeth" when they pass gas!
I cried because I guess I can't understand why the younger sibling was so involved in raising Anthony that you used the word "we" when talking about his treatment and medications over and over. Every situation is so different so, I am definitely not judging but, it still makes me sad that you had to worry about adult things.
The fact that you understand that food, and other medical factors affect behavior tells me how extremely smart you are. A lot of adults don't even understand that.
I love the fact that you are a contributing editor for Age of Autism because I think the siblings perspective is a voice that should be heard a lot more often.
I have a 17 year old daughter that I hope will write down her feelings one day with her own view about what it's like to live with 2 ASD siblings. (With Medical issues.) We are all deeply affected in our own way and each voice is equally important.
I'll be back to read more when you write. Again, great job!

Maureen

I'm listening!!! :)

Would love to have you guest blog for me sometime at http://www.supersib.com !

supersibling[at]gmail[dot]com

Jeannette Bishop

Thank you, Natalie, for sharing your observations.

Doesn't it seem like immune dysregulation, probably pollution induced, is co-morbid or perhaps causal in just about every chronic health problem of the "developed" world?

Hera

Hi Natalie; what a great an honest article. Did the allergist actually end up testing him for anything? ( I love your dads response too!)
My friend has recently been diagnosed by her doctor with gluten intolerance; her main symptoms were that she was very irritable, felt lousy, and had an acne type skin rash.
She was surprised when the blood test showed she was allergic to gluten, as she hadn't realized that a gluten allergy could cause her symptoms.

Madvocate

p.s. Very nice visual, Natalie.

Madvocate

LOL!!!!!!!!!!!!!!!!!! Love it:

“I don’t believe food allergy affects behavior” the doctor arrogantly told my father. The doctor then proceeded to brag about the world renowned so-and-so she had studied under. My dad responded, “My son has a persistent skin rash and we want to make sure it isn’t from food. Your education has no value to me if you can’t make yourself beneficial…so here’s five bucks, go wash my car.”

Also, substitute my child's name for Anthony's and I could have written this statement:

"The medications either failed immediately, or had no effect. Only one partially helped, but eventually failed. Most meds were a horrible disaster that made Anthony’s problems worse."

Benedetta

Natalie;
Would you take some time from your busy young schedule and tell us about your insulin resistants.

This is not diabetes right?
How do you know - or are you making an educated guess?

I am thinking bout trying for some type of diabetic medicine even though they are not diabetic - Yet.

Raymond Gallup

Our son Eric received many of these prescription medicines over the years for his aggressions and the one that is currently being used the most when Eric has an aggression now is lorezepam/ativan. After 30 minutes taking one it calms him down from any aggressive behavior. Eric does receive other prescription medicines, sadly. Eric is in a residential center so we have little to say unless we decided to bring him home and we couldn't do that because of his aggressive behavior. Also, Eric is used to living at the residential center and anything different would disrupt his routine. We visit him every other weekend for lunch that we bring in and we stay a couple of hours with him eating and reading books to him. We can no longer take him out for fear of an aggression in a public place or restaurant. Eric will be 28 years old on Thursday, January 17, 2013.


Bob Moffitt

Natalie .. you are a tremendous young woman .. God bless you and your family.

Robert Whitaker's book "Anatomy of an Epidemic" .. reveals an incredible amount of scientific research regarding .. some of the very medications you mentioned in your comments ..that raises serious questions regarding their adverse reactions as well as their lack of efficacy over the long term.

So .. unfortunately .. the answer to your question: Is anyone listening? .. is a resounding .. NO. Consider:

Nassir Ghaemi, Tufts Medical Center, APA Conference (2008:

"I would like to point out that in the history of medicine, here are many examples of situations where the vast majority of physicians did something that turned out to be wrong. The best example is bloodletting, which was the most common medical practice from the first century A.D. until the nineteenth century".

I suspect during those hundreds of years there were many doctors who warned against "bloodletting" .. but .. just as today regarding the unknown .. as well as unintended consequences .. of overly prescribed psychotrophic drugs .. NO ONE LISTENED TO THEM.

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