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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Temple Grandin on Medication

Posted by on Jun. 28, 2012 at 11:34 AM
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A lot of you know my stance on medicating certain autism symptoms such as anxiety and seeming depression. My stance came after YEARS of trying various medications that numbed me to the point of stupid because they interfered with my clarity and ability to think quickly, or actually INCREASED anxiety and sleeplessness and in several, also made me suicidal. Because I wasnever diagnosis with Aspergers, it was PTSD and Anxiety and Depression although I often conveyed I wasn't depressed. I'll also add that no one was interested in WHY I felt this way or of environmental changes to help me. It was strictly medicate her-we don't know what to do with her. Apparently at too large of doses.

Here is what Temple says on it, from http://www.autism-help.org/story-autism-inside-view.htm  and I found this very interesting:

MEDICATION
In the next section, I am going to describe my experiences with medication. There are many Autism subtypes, and a medication that works for me may be useless for another case. Parents of autistic children should obtain medical advice from professionals who are knowledgeable of the latest medical research.
 
I read in the medical library that antidepressant drugs such as Tofranil (Imipramine) were effective for treating patients with endogenous anxiety and panic (Sheehan, Beh, Ballenger, & Jacobsen, 1980). The symptoms described in this paper sounded like my symptoms, so I decided to try Tofranil. Fifty mg of Tofranil at bedtime worked like magic. Within a week, the feelings of nervousness started to go away. After being on Tofranil for four years I switched to 50 mg Norpramin (desipramine), which has fewer side effects. These pills have changed my life. Colitis and other stress-related health problems were cured.
 
Dr. Paul Hardy in Boston has found that Tofranil and Prozac (fluoxetine) are both effective for treating certain high-functioning autistic adolescents and adults. Both Dr. Hardy and Dr. John Ratey (personal communication, 1989) have learned that very small doses of these drugs must be used. These doses are usually much lower than the dose prescribed for depression. Too high a dose can cause agitation, aggression, or excitement, and too low a dose will have no effect. My "nerve" attacks would go in cycles, and I have had relapses while on the drug. It took will power to stick with the 50 mg dose and let the relapse subside on its own.
 
Taking the medicine is like adjusting the idle screw on a car's carburetor. Before taking the drug, the engine was racing all the time. Now it runs at normal speed. I no longer fixate, and I am no longer "driven." Prozac and Anafranil (clomipramine) have been very effective in autistics who have obsessive-compulsive symptoms or obsessive thoughts which race through their heads. The effective doses for Prozac have ranged from two 20 mg capsules per week to 40 mg per day. Too high a dose will cause agitation and excitement. If an autistic person becomes agitated the dose should be lowered. Other promising drugs for aggressive autistic adolescents and adults are beta blockers. Beta blockers greatly reduce aggressive behavior (Ratey et al., 1987).
 
SLOW IMPROVEMENT
During the eight years I have been taking antidepressants, there has been a steady improvement in my speech, sociability, and posture. The change was so gradual that I did not notice it. Even though I felt relief from the "nerves" immediately, it takes time to unlearn old behavior patterns.
 
Within the last year, I had an opportunity to visit an old friend who had known me before I started taking antidepressants. My friend, Billie Hart, told me I was a completely different person. She said I used to walk and sit in a hunched-over position and now my posture is straight. Eye contact had improved and I no longer shifted around in my chair. I was also surprised to learn that I no longer seemed to be out of breath all the time, and I had stopped constantly swallowing.
 
Various people I have met at Autism meetings have seen steady improvement in my speech and mannerisms throughout the eight-year period I have taken the medicines. My old friend, Lorna King, also noticed many changes. "Your speech used to seem pressured, coming in almost explosive bursts. Your old tendency to perseverate is gone" (Grandin & Scariano, 1986).
 
I had a odd lack of awareness of my oddities of speech and mannerisms until I looked at videotapes. I think videotapes could be used to help many high-functioning autistics with speech and social skills.

From: http://www.autism-help.org/story-autism-inside-view.htm

by on Jun. 28, 2012 at 11:34 AM
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Replies (1-10):
Meganh4133
by on Jun. 28, 2012 at 11:51 AM

That is good info to have, my son has a psychiatrist apointment today with a new one because the other one wanted to "let the behavior issues work themselves out because it's probably just from a lack of sleep" I know my son doesn't sleep much, by deficating on things and screaming for hours along with almost burning down my house because of his obsession with fire...those don't seem like simply a lack of sleep issue. I don't know that I want to medicate him, but it's good to know that if it is suggested that maybe we can just ask to start on the lowest dose possible.

smarieljlee
by Sara on Jun. 28, 2012 at 11:53 AM
Huh interesting. I have a lot of those symptoms.
greenmommo
by on Jun. 28, 2012 at 11:57 AM
I'm glad it was timely. Yes, if medication is prescribed, I would do a lot if research and start at a very low dose.

I am a firm believer that environmental changes and understanding goes a LONG way to correct a problem and am not at ALL advocating medicating. But I know that I would like to quiet that gnawing feeling Temple speaks about. I do not think medication replaces therapy, but it appears at the right, much lower doses it may help.


Quoting Meganh4133:

That is good info to have, my son has a psychiatrist apointment today with a new one because the other one wanted to "let the behavior issues work themselves out because it's probably just from a lack of sleep" I know my son doesn't sleep much, by deficating on things and screaming for hours along with almost burning down my house because of his obsession with fire...those don't seem like simply a lack of sleep issue. I don't know that I want to medicate him, but it's good to know that if it is suggested that maybe we can just ask to start on the lowest dose possible.


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greenmommo
by on Jun. 28, 2012 at 11:57 AM
You should read the rest of her post.


Quoting smarieljlee:

Huh interesting. I have a lot of those symptoms.

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Austinsmom4544
by Silver Member on Jun. 28, 2012 at 12:03 PM
1 mom liked this

Great article.  It makes a huge difference to have a knowledgable doctor or psychiatrist whose willing to work with you to find the right combination or dosage.  My son is on a very low dose of Abilify, at one point during his hospital stay his dosage was upped by just 2 mg and oh my it brought out the aggression in full force.  I agree its a tricky thing but when you get all the kinks worked out can be a blessing.  I would love to video tape and see all the changes but my son will not tolerate it so I don't push.  I hope at some point my son can get off of the meds, but for right now he is happy, tells me he is much more relaxed and feels better being on them.  I think listening to the child is a big factor, they are the ones enduring it and knows how it makes them feel.

Meganh4133
by on Jun. 28, 2012 at 12:07 PM
1 mom liked this


Quoting greenmommo:

I'm glad it was timely. Yes, if medication is prescribed, I would do a lot if research and start at a very low dose.

I am a firm believer that environmental changes and understanding goes a LONG way to correct a problem and am not at ALL advocating medicating. But I know that I would like to quiet that gnawing feeling Temple speaks about. I do not think medication replaces therapy, but it appears at the right, much lower doses it may help.


Quoting Meganh4133:

That is good info to have, my son has a psychiatrist apointment today with a new one because the other one wanted to "let the behavior issues work themselves out because it's probably just from a lack of sleep" I know my son doesn't sleep much, by deficating on things and screaming for hours along with almost burning down my house because of his obsession with fire...those don't seem like simply a lack of sleep issue. I don't know that I want to medicate him, but it's good to know that if it is suggested that maybe we can just ask to start on the lowest dose possible.


 

Oh I totally agree, he's been in 3 different therapy venues for over 2 years and that won't change, we've done several behavior modification courses and a 9 part parenting class for children with autism. I whole heartedly have been trying EVERYTHING else before there would even be a consideration of meds, but 2 years of therapies and environmental changes including a GFCF diet have not helped, so we also have to keep our options open as far as doing whatever it takes to keep my DS's and our family safe.

momtoscott
by on Jun. 28, 2012 at 1:26 PM

 As I have written in other posts, my son has done very well on very low doses of meds.  When we up them, bad things happen, so we don't do that anymore.  I wonder if the ASD population might be more sensitive in general than the NT population, and that's why small doses work so well.

greenmommo
by on Jun. 28, 2012 at 1:33 PM


Quoting momtoscott:

 As I have written in other posts, my son has done very well on very low doses of meds.  When we up them, bad things happen, so we don't do that anymore.  I wonder if the ASD population might be more sensitive in general than the NT population, and that's why small doses work so well.

I believe you've done so before, but can you share the doses and meds? 

I do think that's the case.  I've VERY sensivite to almost all medications except tylenol.  I believe my mom and grandma to be Aspies too.  My grandmother cannot even take tylenol.   My problem was when things were not working, the docs always thought they needed to increase the dose instead of lower it.  

Temple does talk about it slowing the processes that makes ASD thinking special.  That always bothered me.  I've always been valued for seeing things no one else sees and my incredible memory.  Take those away from me and I'm ... normal.  I never want to be normal.  

momtoscott
by on Jun. 28, 2012 at 1:41 PM
1 mom liked this

 He takes fluvoxamine 50 mg once a day.  This was the first med that worked for him; it is the generic of Luvox.  This one cannot be upped at all.  About nine months later he started risperidone, which he takes at 0.25 mg twice a day.  We very, very occasionally give him a third tablet--maybe once every 3-4 months or so--when his anger escalates.  The other med he takes was added a year ago and is guanfacine, which he takes 1 mg twice a day.  He gets three pills at breakfast, two pills at dinner.  Every once in a while we miss the evening dose when we are out, but we are pretty consistent. 

My son is 5'11", around 165-170 pounds. 

Quoting greenmommo:

 

Quoting momtoscott:

 As I have written in other posts, my son has done very well on very low doses of meds.  When we up them, bad things happen, so we don't do that anymore.  I wonder if the ASD population might be more sensitive in general than the NT population, and that's why small doses work so well.

I believe you've done so before, but can you share the doses and meds? 

I do think that's the case.  I've VERY sensivite to almost all medications except tylenol.  I believe my mom and grandma to be Aspies too.  My grandmother cannot even take tylenol.   My problem was when things were not working, the docs always thought they needed to increase the dose instead of lower it.  

Temple does talk about it slowing the processes that makes ASD thinking special.  That always bothered me.  I've always been valued for seeing things no one else sees and my incredible memory.  Take those away from me and I'm ... normal.  I never want to be normal.  

 

Jean2

badgermom2012
by on Jun. 28, 2012 at 1:43 PM

Yep, I know from reading Grandin's book that she has been on anxiety meds for a long time.  She seems to have a very balanced view about the topic.  My son is only 3 1/2+ and not on any meds, but i haven't completely ruled them out.   As for me, the only med I was ever on was zoloft for 3 months and it did nothing for me.  I'd be open to trying a different med in the future if I had some way of paying for it.    

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