to medicate or not

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my son (high functioning autistic) has been getting observed and tested by the school phychologist. she knows the tests are not accurate because he is smart he just finds it so hard to focus. he gets upset because he wants to do well, he wants to please people and this is hard for me to hear about. she suggested that maybe, at some point in the future, that he may benefit from medication. i just feel so wrong in doing that, i know it could help him but as a former drug addict giving drugs to my baby just makes me cringe. what do you all think? am i being selfish? or is it natural what i am feeling.
thankyou

Sounds like she would medicate your son with ADHD medications. They are very dangerous, and can cause serious heart problems (there is also a warning on the packaging for sudden death), so I would not consider giving them to him unless it seriously impairs him.

Another medication for behavior, Risperdal, is approved for the irritability and aggression associated with autism. I do know that my cousin needs the medication. I've been on it once, and I could not tolerate the lowest dosage.

I don't think you should medicate unless he is seriously impaired, which doesn't sound like the case.

Medication is a last resort. Often attention issues in spectrum kids can be dealt with in other ways. Often the problem is not internal (which is how medication tries to solve it) but external, as a result of sensory issues. If you identify and mitigate the sensory issues, the attention problems often start to go away. AS kids can be sensitive to the most unusual things, from the sound of a paper rustle to the feel of a pencil.

Another issue is that AS kids sometimes don't know how to start, or can be visually overwhelmed by a lot of problems on a piece of paper. Again, this is really an external issue. Break down the work, and the attention problem mitigates.

Also realize that maturity (for lack of a better word) lags in AS kids, so they are often being pushed to do things that simply are beyond them at the moment, but that won't always be. You wouldn't expect a toddler to pay attention for a test, no one would suggest medication, everyone knows in that case that what is needed is simply more time to mature. A similar thing is often at work with AS kids; they simply need more time to grow into expectations.

I would work on these areas first. It takes patience and it takes time but it is a MUCH better solution, in my opinion. The concept of medication has been brought up for my son a few times, and each time I've worked on the external factors and improving processes first. Just when I'm about to give up, things improve. Sometimes it's the process; sometimes he has finally grown into it. My son has never been on medication and I really don't believe he ever will be. The key is to help him manage life on his own terms, not to medicate him so that he is no longer sensitive to it.

I will qualify that of course it is possible that your child also has ADD, in which medication might be appropriate, but I believe ADD is diagnosed in AS kids far more often than it actually exists, since other issues can appear as ADD, so extreme caution is called for.

Last edited by DW_a_mom on 10 Dec 2008, 1:34 pm, edited 1 time in total.

Well maybe "at some point in the future" you could discuss it with him. Maybe he'd like to give it a try and see if it's helpful. Maybe he'd rather not. I just think he should have a say in it.

This will help aviod distant conversations that start with "It's your fault because you put me on/ didn't put me on..."

i think you need to discuss this with his doctor.......it's *possible* that medication would help attention issues- it's also possible that the sort of attention issues he has are not related to ADHD-like symptoms, but anxiety instead........we have had good luck with anti-anxiety meds. hubby, son & daughter take them at varying levels. speaking for all of them, they have been more successful at focusing and feeling calmer than they were/are without the meds.

My kids have so many problems from epilepsy to adhd to Autism. So ya, we medicate but as little as possible. My Highfunctioning ASD child takes Geadone. Which has helped him so much with his anger/rage. My Aspie is on Adhd meds just for school and seisure meds. They use to take lots of suppliments but they started to rebel against swallowing so many pills so I had to pick my battles. Now they take just what they have to have. Every now and then I will throw in a suppliment.

I'm assuming from your post this talk was around ADD/ADHD medications? Or more specifically ADHD because that's the part of the autism spectrum that there has been success with, those that present as very hyperactive.

A few things. First, it is a quite normal (and IMO healthy) thing to cringe, even without your personal history. With my oldest (not spectrum, this was ADD with a mix of a couple other things) I, and my ex especially, resisted going that route. I'm happy that I did eventually make the decision to try it (in the end it was my decision alone, due terms of a custody order). Though in truth I was sort of leaving my son hanging out there by holding off on him trying medication I can't really say I regret taking my time making the decision.

Second, there are two major classes of medications. The first are stimulants. There are a number of them. Ritalin is probably the most famous/infamous, but they all pretty much work the same way by pushing up dopamine levels. They are effectively pharmaceutical versions of speed/meth, though the proper dosage is well below "street"/"recreational" use (more on this later).

The second class are non-stimulants called NRIs (( norepinephrine reuptake inhibitors, you'll have to look it up because I can't link yet )). The one that I know has been [somewhat] tested and used for autistics is atomoxetine, originally branded Strattera. They work differently and have a few benefits over the stimulants. The first is that they often have somewhat milder side effects. The second is that they provide 24 hr coverage. They are like SSRI anti-depressants (in fact Strattera was originally developed with the intention of using it as an anti-depressant) in that you build up a load in your system over a period of several days and then maintain that load with a daily or twice daily dosage. With the stimulants you take them and usually they are gone again in 4 to 10 hours (some have time release versions that give the longer range). The third benefit is that unlike stimulants the risk of abuse (intentional or otherwise) is really small. I personally take Strattera (yes, ADHD/ADD runs strong in my family) and I can attest that going beyond your proper clinical dose is NOT a pleasant or enticing thing.

So lets talk what is the correct dose, what does it do exactly? What's it suppose to "feel" like? This is, as far as I've seen, an area that is more confusing for someone taking a stimulant. Especially if they aren't properly briefed and coached. The correct feeling is that you get to make choices that simply weren't open to you before. From the inside-out view the medication creates a moment in between you perceiving something in your environment and you acting on that event, and in that moment you can make a choice about what your [re]action will be. That is what it does, it does NOT tell you what to choose. You are still free to make the "wrong" choices. If the medication is telling you what to do, what choice to make, you are taking too much!** As I mentioned this is typically more apparent with Strattera, when I was above proper dose (happened during initial dialing into the right dose because I'm an uncommon person that requires about 1/2 normal dose for my weight) I was angry. EVERY SINGLE MOMENT OF THE DAY. Just this empty angry about nothing, a disconcerting feeling to say the least. Unfortunately with stimulants it isn't as clear cut because being above dosage usually feels "good" in that euphoric way, at least on the way up and if you don't take so much that you get that amphetamine psychosis paranoia. If you aren't aware of the illusion it's easy to get tricked (and you'll run into problems if not right away, shortly down the road).

NRIs though have a few downsides compared to stimulants.
1) Cost, they are more expensive. I've got a really good drug plan at the moment, so this isn't a huge issue for me, but I believe it's about 4-5$/day here in Canada.
2) There isn't a huge body of testing with autistics specifically. I'm only aware of one atomoxetine double-blind trial done by Ohio State University plus a few other "open label" trials. The results were good but IIRC there was less than 20 test subjects in the trial, so use of these medications in combination with autism isn't really on the well beaten, understood path yet. I've seen it work though in person, for a 10-year-old spectrum child that tried it (though he eventually had to discontinue because of side effects). When it works it's pretty damn dramatic.
3) One very unnerving side effect, that seems to only affect teenagers/children, is that in about 0.4% of patients the atomoxetine will induce ideations of suicide/death. I'm not talking about making some offhand figure of speech "I wish I was dead" or such, this is real contemplation. You MUST watch for this. It doesn't mean one day out of nowhere they'll try to kill themselves and the number is dwarfed by the estimates of the percentage of teenagers in the general population that will have thoughts about suicide. But it is serious business and if it happens it's straight off the medication.

The last thing is coaching. Medications + solid training on how to take advantage of them is the path to success. This is hard earned knowledge speaking here. Yeah people can muddle their way through, maybe even come through brilliantly and figure things out themselves. But that's not the smart way because the medication is just a tool, and like any tool it works better when you get training in how to use it.


Now a few questions for you: The implication of the above is that success is going to be partially a factor of self awareness level of your son. I'll ask you how old is he? How much work has he put in already on [explicit] learning to moderate himself? What strategies have you or others worked on with him towards that end?


** I should qualify this in that during the initial phases of taking either stimulants or NRIs, as your body adjusts and you work through the temporary side effects, you can get a bit of a euphoric feeling and feel a bit more "driven" but this should pass within days.

You're quite right to be wary of medication and whatever the suggested medication is, you need to research it well before using it.

First up.... There is NO medication that is known to work on Aspergers. Only on the comorbid conditions, such as ADHD/ADD.

This being the case, you should get an idea from your doctor exactly which behaviours are supposed to be suppressed etc. This will give you a way to identify whether it's working at all.

Secondly, ask the Doctor how long it takes for the drug to get into the system (and how long to get out). Ask about side-effects (and you'll probably be given a brochure).

Finally Ask the doctor how long you should test for before either changing the dosage or abandoning the test.

For example, our child's doctor said that two weeks was the maximum time that our child should be on medication without any visible effects.

Also... try taking the drug yourself first... (or get the relative with the closest symptoms to your child to take it). Adjust the dose to adult level (based on weight). That will give you the best indication of what the drug will do in your family dna.

Check out the drug on wikipedia... it's a more "personal" source of information and while you'll get more extremist views there, you'll also get some real-life discussions which aren't so evident in clinical trials.

If the drug is ritalin, have a read of my blog on the effects I found when I tested my son's drugs on myself.


Have a http://life-with-aspergers.blogspot.com/2008/05/what-does-ritalin-really-feel-like.html

AI-freaking-KARUMBA!! ! is pretty much all I've got to say to that.

I am pro medication, so long as its done reasonably. The problem is that many people do it improperly, and have bad results. Basically, if you want to medicate, it involves 4 steps.

1. Determine if there is a clear, and unusual problem that needs correcting.

If your 3rd grade son is getting bored in math class and doesnt pay attention, that is not an unusual problem. If your son is having angrily violent meltdowns over small things like his shoe laces coming untied then that is a clear and unusual problem. It hurts the people around him, and also hurts himself because he cant get an effective education, or make friends.

2. Try non-drug remedies first.

If you want your third grader to pay attention in class, try fixing a more nutritious breakfast that improves concentration. Sugary coated marshmallows may be tasty, but they lead to a sugar crash that reduces focus. You could also try a reward system for getting good grades, or something else like that. If your child is having meltdowns, try changing the circumstances to be less stressful. Teach him anger management techniques, learn what sets him off and teach him how to avoid it.

3. If #2 doesnt work, and the problem is still serious enough that it needs fixing, then do research into medication.

Just because your doctor recommends medication doesnt mean that you want to take it. Consult a second doctor, find out the side effects. See if you can find any message boards that talk about the drug. Familiarize yourself with the side effects, so you can spot them. Figure out the recommended dosage, check to see if there is a chance of addiction, and withdrawal symptoms. Once you have this info, compare the possible benefits to the possible side effects. Do you really want to get your child addicted to speed (the active ingredient in Ritalin) just so he will sit still in math class?

Obviously there are some situations where the behavior is so destructive that nobody is happy, and the child is self destructing. In those cases, immediate and severe problems outweigh possible side effects of medication.

4. If you decide that the risk of the medicine is worth, then medicate your child and track the results.

Deciding to medicate isnt the last step. You have to track the progress and determine if any serious side effects are occurring, and if the drug is actually helping. If the drug doesnt seem to help, then dont take it. If the side effects outweigh the benefits, then stop taking it. An autistic child wont usually complain about side effects, so you need to watch for them yourself.

Too many people see medication as a quick fix to behavioral problems, and just drug up their child without doing much research into the side effects. But, if done intelligently, medication can greatly improve one's quality of life. There are many with AS on this forum who depend on medication to function properly. Just because some people medicate incorrectly, doesnt mean all medication is bad.

Be careful. Many ADHD meds can cause tics. Watch for odd side affects. You will go through many medications before you find the right ones. My son had to be pulled off of Vyvannse because of a coughing tic. He had to be pulled off of Respridal becuase of massive weight gain(med worked great though). Depakote is bad for kids who may have medibolic disorders like Mitochondrial Disease.

Now a few questions for you: The implication of the above is that success is going to be partially a factor of self awareness level of your son. I'll ask you how old is he? How much work has he put in already on [explicit] learning to moderate himself? What strategies have you or others worked on with him towards that end?

he is 6, he was only diagnosed, verbally, last tuesday so we are really in the initial/learning stage.
the medication was just mentioned by the school phychologist who was testing him yesterday. she said it would be something to consider in the next few years, as school gets more demanding - she is just very concerned that he finds it very difficult being in a classroom situation and trying to focus. like i said, we are all just learning about how his autism affects him and we are all very willing to try every other option first. i just really wanted to get oppinions from other parents.

thank you all for taking the time to give me advice and info and as soon as school is finished for me (friday is my last day, wooo hoo) i will work on researching medical and non medical solutions.
thanks again

From what I've experienced, unfortunately most medical people (psychs, etc.) we have dealt with regarding my son have only suggested medication alternatives. I have a big problem with this as they are depriving people of making informed decisions based on laying out all options available. The psychiatrist we saw the other week called me "rigid" for wanting to experiment with alternatives before going down the medication track.

Fortunately for us, the autism school workers are more into doing Functional Behaviour Analysis and determining what environmental factors are upsetting our son, and what accommodations can be made. We have seen significant progress with their help.

Personally, I would try everything else before medication, but that is not to say I would never go there. Look into some things like ToCoQ10 or Phosphatydil Serine for improving attention(http://www.phpbbcity.com/forum/viewforu ... =psforadhd). Also brain exercises.

thanks so much, that sounds like really useful advice and i deff agree with other options first

>> he is 6, he was only diagnosed, verbally, last tuesday so we are really in the initial/learning stage.

Good to hear that this was just a heads-up from the psychologist about potential options down the road. It gives you a lot of time to consider the possibility, it's something that I wouldn't want to have to decide on short notice. Also 6 is at the young end for medication, certainly without immediate safety concerns. My oldest was about 6 when he started but we'd been working with him a while and that was a safety issue. He was very large for his age, there was violence at school. It wasn't a matter of him making bad choices, it was a matter of him not having the opportunity to make the choice in the moment. He wasn't able to describe it fully above as I did (he has an LD as well) but the first time after he started the meds and didn't get in a fight because of an event that had triggered fights before I asked him why. He said because he knew it was wrong to. Inherent in that, I realized, is that he had made a choice. That was when it was clear that he had learned what we and his teachers had be instructing him, he just hadn't had the opportunity to put it into action.

Same thing with my currently 6, rapidly coming on 7 year-old autistic son. There are safety concerns, though not the exact same ones. He's now had 2 sets of stitches, a concussion, and a few times with police searches resulting from his very impulsive behavior. So we are going to consider it this spring, he's maturing and becoming much more self aware.

But if there are no safety immediate safety concerns for your son (doesn't sound like it anyway) and you are just at the start of working on this. Hopefully he'll be able to get through without the medication. At the least he'll be much more ready to take advantage of it if he does. All I'd do was watch out for signs of him becoming very disheartened if he's running into constant failure even with specific techniques.

In any event best wishes!


P.S. It's quite possible too if he does need a little edge to gain some control, to learn how to self regulate, that past that he might be able to get by without the medication. It'd be much harder, no doubt, to get by without the meds. But if they are close enough that kind of training wheels seems to be enough to get some people started.

I'm glad I'll never have to deal with this issue. I'm waiting until my son is 18 and will be able to make decisions regarding permanently altering his brain and body for himself. I will certainly do my best to provide as much information as I can to him at that time (because there are studies to reference for the 18+ group), but for now there aren't enough studies done on children to even consider making my own flesh and blood a pharmaceutical guinea pig.