Medication for AS?

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My son was recently diagnosed, so this is new to me. I didn't realize AS was something you medicated. Our psychologist recommended Risperdal (off label) to help with his anger.

Well, after researching that drug, I'm fairly certain I don't want to come anywhere near it. I'd much rather help him with behavior & diet modifications.

Our pediatrician said we could try intuniv (guanfacine). Another off label use. This medicine is fairly new.

I don't know. Is it common to use meds with AS?

There are no meds specifically for AS, but many people are helped with meds that are commonly used to treat ADHD, anxiety, or OCD. Guanfacine is often used off label to treat ADHD when there are medical reasons or parental preference not to use stimulants.

Many people recommend trying non-med therapies first, such as occupational therapy, working with a behaviorist, and/or social skills class.

Don't just go to your general pediatrician, though. Ideally you want a developmental pediatrician or child psychiatrist who has tons of experience treating kids with ASD.

Also, since the diagnosis I'd so new, I'd strongly encourage you to find someone who can help you figure out the causes of his anger before you medicate -- is it how he expresses anxiety, an inability to stay focused, or a result of dealing with too many sensory issues?

For my son, all the tricks in the OT's bag could only keep him focused for a few minutes at a time, and it became clear it was time to try meds. (He's currently on aderall and guanfacine, but I don't think guanfacine is right for him and we may soon try something else.)

Actually, Risperdal is FDA approved in the U.S. for irritation associated with ASD. However, it is an atypical antipsychotic, and many people have difficulty with it--reduced ability to concentrate or "zombie-like" behavior. However, in scientific studies, it has helped many people. Some people prefer Abilify, another antypical antipsychotic, if an anti-psychotic is needed. Abilify is also FDA approved in the U.S. for irritability associated with ASD.

Intuniv is a time-released version of guanfacine and very expensive if your insurance does not cover it. It has a high potential for causing drowsiness and causes weepiness in some (like my younger son, who tried it). However, it is a good choice for some. I know of a mom with a non-verbal adult on the spectrum with anger issues; she is happy with using this drug in combination with other medicines. My kids both take Clonidine, a very similar med that has been used for ASD for years, at night for sleep and anxiety and occasionally part of a Clonidine during the day if they have a severe anxiety attack/meltdown.

My kids are young (ages 7 and 4) and on Prozac, an SSRI anti-depressant that also helps with anxiety and helps keep everyone happy. It is better tolerated than the meds that you mentioned, but it does not address psychotic issues and it is not as strong as the Intuniv for treatment of anxiety. However, the above two meds you mentioned are very commonly used, particularly with severe ASD symptoms.

I personally think that a child psychiatrist or pediatric neurologist is the ideal way to go for management of meds.

Also, my kids both do ABA therapy because I don't want to be trying to medicate any behaviors that can be fixed through behavior therapy.

I personally take 1 mg Risperdal at night and it makes a MAJOR difference in my sensory problems. It is approved for irritability and anger in ASDs. I agree that a child neurologist or child psychiatrist is probably the best physician to manage medications, if you choose to go that route. My kids all have ADHD, and my middle child has ADHD and AS. She's on Vyvanse and Zoloft, as is my 18 year old son...they do well on that combination. My youngest is only on Vyvanse, as she's the most NT of the bunch. We tried Risperdal with my AS daughter for a month or two, but it didn't really seem to make much of a difference (not like it does with me) so we stopped it.

~Kate

I think my biggest concern is that he was literally just diagnosed. We don't see OT until 2/16. The waiting list for a developmental pediatrician is over a year. I don't want someone throwing medication at him. I do not takes meds lightly, so it really frightened me. He was boderline AS on one test and mild on another. We definitely have an issue with anger & frustration but I personally feel like we've been dealing with it without meds this long, we can surely try other methods first.

Based on my experience with Risperdal, I wouldn't even consider it unless he's violently aggressive (aggressively violent??). If he's not, I'd drop that damn doctor like a flaming shoe. That's NOT something to throw around "because that's how we treat Asperger's."

I think the goddamn doctors ought to have to spend 90 days taking it before they can even think about giving it to other people.

But you have to understand that I had the world's worst reaction to the stuff on top of having it shoved down my throat when I dared to express anger with a very bad situation not to mention five years of repressing every negative emotion I had. It was an abuse of the medication by ignorant people who understood neither the disorder, nor the situation, nor the person, and thought they knew everything and because they had degrees and I did not, and I wasn't worth listening to because I was a "ret*d."

These idiots actually applauded me and told me it was the best I could hope for when I said I was going to cut off contact with everyone but my husband and my kids and try to look at being a wife and a mother as a job with no emotional involvement whatever. They were f**ktards.

*off soapbox*

Might not be the case in your situation. Proceed with caution.

You might want to consider a trial of Anafranil + Concerta.

Anafranil is a TCA, and it's known to be a good drug to try with mild autism -- especially with comorbid ADD that's treated with something like Concerta. Anafranil by itself can be sedating, but Concerta can undo that. Concerta by itself can feel very "raw" to aspies, but TCAs can take the "edge" off of it AND make each dose last an hour or two longer (TCAs tend to potentiate methylphenidate).

I haven't personally tried Anafranil yet, but I'm planning to give it a try this spring. I took Desipramine with Concerta for more than 10 years, and was really happy with it until my doctor refused to let me have desipramine anymore due to cardiac concerns (Anafranil isn't entirely immune to them, but it's not believed to cause them as potently as desipramine does).

The right meds (which might include a combination of BOTH a sedating drug AND Concerta or amphetamines) can make his life a lot nicer. The wrong meds will make him completely miserable. His mileage might vary, but I'm a very big fan of the TCA+stimulant approach.

The answer to your question of, "how common is medication with AS," is, in my opinion: more common than it needs to be.

As others have said, there is no medication for AS. The medication is usually for co-morbids and/or stress caused by living with AS.

I have never put my ASD son (now 14) on anything, even though there were times people suggested it to us. Doctors are trained to hand out pills, and they can't, in a 10 minute office visit, even begin to discuss the hard work of identifying triggers, mitigating sensory issues, teaching your child to self-calm, and so on. Since parents want to leave a doctor's office with an answer, they hand out pills.

But in many cases you can accomplish all that a pill would accomplish, and much more, by doing the long, slow work of studying your child's reactions, figuring out his sensory issues, noticing how his stress builds up, and then controlling the environment to remove stress factors. At your son's age, I think learning what makes him tick, what his sensitivities are, is primary, and that can be masked by medication.

Some children need medication to get through the day, and for those families medication is an important and useful option.

But medication shouldn't be the default position, even though somehow it seems to have become just that.

As for the "anger," I think that, as you come to understand more AS and improve communication with your son, that ought to start to mitigate. Your child experiences a lot of frustration trying to communicate and understand the world around him, everything is so confusing to a child with AS, that a little anger seems natural. And then may also be meltdowns that look like anger, but are really stress and sensory related, with everything misfiring in your son's brain. As you learn more about AS, and hopefully start to figure out the patterns with your son, you'll be able to mitigate those, too and, hopefully, eventually teach him to self-mitigate. As you learn more about AS, you'll understand how some of the "odd" behaviors we want to suppress for social reasons are actually central to your child keeping himself calm and centered. And so on. As all those bridges get crossed, the issues, if you are lucky, get solved. And if they don't ... well, the medication option will still be there.

It took us five years of hard work to get things on a good, solid path with our son, but we did it. HE did it. He now has tools that will last a life time. And no medication to mask what is really going on in his head.

Well... as a respectful counterpoint... you could teach a child to deal with astigmatism by giving up reading. However, pretty much everyone will think you're insane, and argue that sharpening his vision with glasses so he can read is a more beneficial strategy. I make the exact same point with respect to attention. You could steer him away from anything that requires sharp concentration, but in the long run, he's going to be better off if he has stimulant meds so he can just focus instead.

A mind is a terrible thing to waste.

40 years ago, doctors treated kids with autism the way veterinarians treat puppies. That's no longer necessary. An entire generation has grown up having collectively tried every combination of meds that's out there. Some are much better than others, and most of those are better than nothing at all. If you *must* give him an antipsychotic, please at least talk to the doctor about giving him Concerta or amphetamines as well.

The combination isn't entirely crazy... Oversimplifying a bit, antipsychotics generally dampen the effects of both D1 and D2. Methylphenidate and amphetamines act mostly to increase the effect of D1. Most "bad" autistic behavior is associated with D2. The combination is kind of like using a satellite dish to boost the signal of one satellite more than the signals (on the same frequency) from adjacent satellites, so they can then be attenuated so only the desired satellite's signal is strong enough to receive. The combo of APs (and some TCAs) with Concerta or amphetamines is similar. It would be better if there were a single drug capable of boosting the action of D1 while dampening the action of D2, but (AFAIK) such a drug doesn't exist (yet).

Attention issues in AS are nothing like a stigmatism. It's not like you have to control the environment forever; in that space of calm and nuture they are free to grow and mature in their own way and, as I've seen with my son, THEY DO. It depends on the chilld, of course, but I am CONVINCED that my son would not have accomplished nearly as much as he has if he had been on medication, and he agrees with me. I really resent the implication that anyone's mind is wasted by adapting to their needs, instead of medicating them until their square peg can slip through a round hole. I know that medication is an essential tool for many kids, but the idea that it is necessary for all or even most AS kids is ridiculous.

I have an engaged, creative and smart 14 year old who is capable of leadership and being a key player in a group project, no meltdowns. He learned that by first truly learning how to understand and manage himself.

The reason why I medicate my son. He is ALWAYS introuble. He is ALWAYS gertting repromanded, redirected, or having his prized posessions threatened or removed due to his behaviors. We have tried behavior mod techniques to no avail, therapy to no avail, charts, graphs, talking, reading, you name it we have tried it. I CANNOT allow my son to behave as he does with no repercussion. Yet constantly being told waht to do, not to do, getting in trouble, being impulsive and hurting others when you dont mean to,etc...those all have negative side effects that can and will change a preson how they look at and feel about themselves.

He also has major anxiety that no matter how much I talk, reassure, clam, etc...he cannot NOT be anxious. He has OCD. No matter how many strategies I have tried to alleviate his OCD issues, his rituals, his thoughts that MUST BE Followed THRU...no change.

So, I decided that I would like him to have relief. NOW. I would like him to have the ability to ENJOY life without the cloud of anxiety hovering over him, without this OCD rituals and behaviors holding him back. If that means medication, then so be it. I have SEEN a MAJOR change in those 2 areas on meds, and it is great. It is great to see my son relaxed, enjoying things that normally would have set him off or casued a huge meltdown due to the build up of anxiety.

The IDEA, as our psychiatrist put it, is to have the meds help him lessen the anxiety and OCD enough for him to be open to learning the strategies he will utelize to relieve his anxiety and OCD. These then will stick with him when he is OFF meds. But, unmedicated, he cannot learn these strategies when in a constant state of anxiety and OCD.

Have you ever suffered an anxiety attack? I have and they are miserable. I cannot let my son suffer, and I wont.

I am not trying to fit my square kid into a round hole, I am trying to get him RELIEF to very serious issuesthat are difficult for ADULTS to live with, let alone a 6yo boy.

I have also learned just casue a certain treatment plan or approach worked for one child, dosent mean it willwork that way for all. If no meds were needed, and your child has overcome, that is amazing, and congrats. But that dosent mean all kids with AS will have that same outcome unmedicated.

Well, as somebody who grew up with both, I have to disagree. Qualitatively, the experience of spending a day without amphetamines is no different that the experience of spending a day without glasses. Both are equally miserable experiences, and the practical outcomes are similar. The only difference is that without glasses, I can only read slowly (and under tremendous stress from eyestrain). Without amphetamines, I can barely have three coherent thoughts in a row, and would have to read everything multiple times to digest it. The net effect of both scenarios upon my reading speed, stress level, and comprehension is almost identical.

@DW_a_mom: the fact that your child has come as far as he has without medication is wonderful, and you've unquestionably worked hard to get him to that point. Now imagine what he could do with those coping skills he's built up if many of the underlying physical issues themselves were reduced.

I'm not suggesting that you "put" your son on anything. For one thing, Aspies who are old enough to be capable of introspection (and intelligent Aspie teens with normal or better communication skills most certainly are) should be the primary driver of any medication decisions. He'll know what makes him feel better, what makes him feel worse, and will have no problem deciding whether something is a net improvement or harm.

In fact, what I'd suggest is that you tell him about sites like this, mention to him that you've read that some medications might make it easier for him to focus and have less anxiety, and let him know that you're open to letting him try some if HE does his own research and comes up with possible meds to try. Tell him that you retain veto rights, but reassure him that you aren't going to MAKE him take anything. There's a huge psychological difference between being told as a teen that you might be allowed to do something, vs being told that it's going to be rammed down your throat.

Most importantly, find a psychiatrist who specializes in treating ADULT ADD & is comfortable with the idea that ADD & AS can (and frequently, if not "often", DO) co-exist, or at least have overlapping symptoms that respond to the same meds. Doctors who are used to working with kids & parents are, IMHO, a half step up from veterinarians. They write prescriptions for the fashionable new drug of the month, and measure their success by parental reports of "compliant" and "well-behaved" kids. More often than not, they have no idea what's actually going on inside a child's mind, they just know that their magic drugs seem to "work". Doctors who deal mainly with adults, in contrast, are used to engaging directly with the patient himself. With an "adult" psychiatrist, your role is more like that of a spouse who's a valued observer and cheeerleader.

Also, on a related note... stim meds can help with anxiety , too. Pharmacokinetically, of course, they can amplify anxiety when it occurs, but by improving focus and enabling Aspies to feel like they're more firmly in control of their environment, they can also nip many episodes of anxiety in the bud and prevent them from ever happening.

Here's a perfect example. Every year on Christmas Eve, my parents have to get me a pizza for dinner (they gave up fighting with me about it sometime around 8th grade). This year, my mom screwed up and didn't notice that all the usual places were going to be closed when it was time to place the order. Had I been unmedicated, I would have come completely unglued and probably had a full-blown meltdown. At the very least, I wouldn't have said 3 words to anybody during dinner, would have been in a really bad mood, and would have probably exploded into a full-blown meltdown if anybody dared to criticize me for eating a plate of Christmas Cookies in lieu of the pizza.

Fortunately, I'd taken my Adderall ~2 hours before the discovery, so I was feeling happy and firmly in control. When my mom admitted her mistake to me, I didn't freak out. I contemplated it for a moment, mentally ran through the various possibilities, and calmly decided to just go buy the ingredients to make a pizza from Publix (the grocery store). The irony is that my mom was the one who almost came unhinged at the thought of me "making a mess" in the kitchen. For me, it was just like, "Crap. I really wanted Domino's. Oh well... (3 seconds of contemplation) time for plan B!"

Without stim meds, I feel completely overwhelmed and powerless. With them, I'm able to shove most of those distractions aside and happily ignore most of them. I feel like I'm firmly in control, and can literally feel my stress & anxiety both melt away. I still have serious problems with executive function (prioritizing, and focusing on the *right* thing), and sometimes I get into trouble for aggressively ignoring something that I really need to deal with, but overall, I do much better than I would otherwise (and I have high hopes that the Anafranil will do something positive for my executive dysfunction, possibly better than even desipramine used to).

Last edited by dr01dguy on 21 Jan 2012, 1:31 pm, edited 1 time in total.

MMJMOM, my post wasn't directed to you, and I think you've outlined beautifully the considerations that would lead someone to choose medication.

But that was not my child and the OP hasn't indicated that it is her child. It may be, it may not be, but we have a duty not to assume anything and let her know best as possible from our stories what the variables are.

DrO1dguy, my son has ALWAYS been part of this decision. He is proud of his uniqueness, and proud of how he thinks, and has never been willing to risk that. He doesn't suffer from much anxiety, only very rare panic attacks, no depression. Anger and meltdowns, yes, but they are triggered, in his eyes, by a world with ridiculous standards and tastes. Still, he's been able to learn to adapt and self-mitigate and melt-downs are now mild and infrequent, to the point it seems they don't happen at all; he's pretty much like an average teen with all that. His big issue is in the hypotonia-hypermobility co-morbid and that is very frustrating for him, and also completely un-medicatable. He is, after a more difficult middle school experience (due to the executive function problem, also not cured by medication), a straight A honors student who just won a part in the school play. I don't believe there is any more "there" to be had. I regret not trying OT younger and more frequently, but that is it. He isn't you, and you can't transfer your feelings onto him. I have a high school telling me they have never seen an AS child doing so well; they are giddy with excitement having him; I think I've done something right. The point here is to let the OP know what the factors and considerations are, but not to draw her to a set conclusion.

When we realized our daughter is probably ADD, we started by having her meet with my sister, who had to cope with ADD before it became a common, and medicated, diagnosis. My daughter learned tricks from her that are allowing her to stay of medication. She is thrilled with that result and also a straight A student.

I think with the OP the big thing is that the diagnosis is brand new, and medication was pretty much the first thing out of the doctor's mouth. It is that idea, that A must mean B, that I object to. Far too many factors and considerations are involved.

Some other points and considerations:

Many families here have used medication to get past a rough period, and then withdrawn. Depending on the type, medication does not have to be a long term thing.

There is growing evidence that anti-depressants, however, do permanently alter brain chemistry, making them much more difficult to get off of. I have used this class of medication myself, and do feel that permanent changes have occurred, not all for the better, to the point where if I had it to do over, I don't know if I would have ever started. As a result, I would be extremely cautious about giving anything from this class of medications to a child. We do not know the long term affects.

We have made choices as a family related to this road that not all families will be willing to make. Essential to my son's mood maintenance, for example, is his need to touch and fiddle and pace ... with the end result, our home looks like a hurricane hit it, and we just accept the fact that we can no longer own anything special and undamaged. Home is his "free" space, and we don't hold him to strict rules of behavior here. It is just something he needs, and it helps him an amazing amount to have that.

Last edited by DW_a_mom on 21 Jan 2012, 2:36 pm, edited 5 times in total.

I agree with your post, and understand why you posted about your son's experience. I posted about My son to show that there are indeed cases that medication would benefit the child. The OP wasnt specific about the issues her son is presenting except anger. To be honest with you, my sonis very angry, and his anger scareds me. Not casue he is dangerous...he is 6, BUT I fear how that anger will manifest itself when he is 13,17, etc...If it isnt brought under control in the coming years.

ABSOLUTELY not all kids will need medication. But just as ABSOLUTE that some kids WILL need medication.

Knowing your child is key!

..

Last edited by OliveOilMom on 21 Jan 2012, 6:07 pm, edited 1 time in total.