Home > Science, Uncategorized > Our New Medication Decision Aid in Action …

Our New Medication Decision Aid in Action …

Posted by pediatric nurse practitioner Lynn Cole, associate director of clinical services at the University of Rochester’s Division of Neurodevelopmental and Behavioral Pediatrics, one of 17 Autism Speaks Autism Treatment Network (ATN) sites across North America.

As a nurse practitioner and autism specialist, I often see families who ask about medicine. Today was no exception. The third family on my schedule was that of a delightfully engaging 7 year old who loves Thomas the Tank Engine and airplanes. While he has made substantial progress in many areas—language, changes in routine, self-help skills—he continues to struggle with attention problems and anxiety. His family described the many behavioral and educational interventions in place to help him. They worried that these difficulties would limit his learning and success. They wondered what I thought about medication.

The decision to use medicine to treat challenging behaviors is a difficult one. Some childhood disorders have an obvious treatment–diabetes is treated with insulin, for example. Best treatment for a child with autism is not so clear cut. Hearing parents talk about their stress around these decisions, I began thinking about new ways to partner with families in the decision-making process.

It was on this quest that I learned about Shared Decision Making. In a nutshell, this describes a process for making a decision when there is not one clear “best choice.” Patients, families and health care providers work together to make a decision while considering risks and benefits in the context of patient and family values and preferences.

Sharing in these decisions, however, is easier said than done!  Families often need help conveying the nature of the role they want to play. Often, they also need help taking stock of their personal values and preferences as they relate to medications. Providers, in turn, need to convey risk and benefit information in ways that makes sense to families.

Should My Child Take Medicine for Challenging Behavior?—is an interactive toolkit with questions and worksheets that help families work with their health care providers to make decisions that reflect the family’s goals and values for their child.

From first-hand experience, we know that this decision aid can help families move through the decision-making process before, during or after meeting with a healthcare professional. The family with whom I met this morning, for example, had used the toolkit before their appointment and brought a printout of their worksheets. When I asked them how they saw their role in the decision, they told me that they would like information and options, but that they would make the final decision. They were able to express their values, including that they were generally a “no medicine family,” that they generally preferred natural treatments and that side effects were a big concern for them.

They had put thought into both the risks of treatment and the risks of not treating their son’s symptoms. For instance, they saw a significant risk of his missing out on educational and social opportunities because of his symptoms. Given their concern about side effects, we focused on an option with relatively few of them.

Together, we developed a treatment plan. They left with a prescription and a commitment to review the risks and benefits again that weekend—before making their decision.  Although this remained a difficult issue, they spoke with satisfaction about the process we used.

Healthcare providers have likewise expressed great satisfaction with the ATN’s new medication decision aid. “I liked using it with my patients so much,” one colleague told me, “that I found a decision aid about treatment of my own health condition and used it to discuss options with my doctor!” We hope you, too, will find this new toolkit useful. You can download it here. Please let us know about your experience by emailing us at atn@autismspeaks.org.

The Autism Speaks ATN/AIR-P Medicine Decision Aid is the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.

Categories: Science, Uncategorized
  1. Katie Wright
    September 27, 2011 at 10:43 am

    This nurse is obviously the kind of clinician we wish all our children saw, caring, respectful kind. However, what other biomedical, non behavioral, interventions are presented before medications?
    Why doesn’t ATN offer insight into the latest science on dietary interventions for children w/ GI problems?

    • September 30, 2011 at 7:47 am

      Stay tuned … We in fact have an ATN clinician writing a response to a recent question about gluten-free, casein-free diets. Thx!

  2. Jeanine Cantrell
    September 27, 2011 at 11:29 am

    We have found that a gluten/dairy free,low sugar diet has benefited our son well.Now that he’s turned 14 however,we’re seeing a lot of regression.We’re attributing this to puberty/hormones he has just entered High School,with teachers who seem to have zero tolerance for immaturity…like the kids,during Summer break,suddenly grew into mature thinking adults! Not sure if he’ll make it through a typical class setting in this environment but,we’ll keep moving forward without prescription drugs thank you.

    • Suzanne Cipriani
      September 29, 2011 at 8:54 am

      My autistic son is 11 and has to be on the diet because of celiac disease but we are now seriously thinking of medication because of increase aggression and puberty issues that is causing inappropriate behavior…this decision is difficult because I believe in holistic medicine. I am tired of the struggles…I want to start enjoying my family and my life again. I don’t like the roller coaster ride. Also my 13 year old daughter is becoming resentful of all the attention my son has been getting all these years with the therapy sessions, meetings and inability to do the regular family activities.

  3. Sloane
    September 27, 2011 at 12:12 pm

    I have a 15 yr old with several behavioral issues as typical with autism , Ive tried all the diets ,some meds and trying to find out the “right cocktail” was infuriating,worse is the teachers who threaten you to put your child on something or he’ll have to go to another alternative school ” even though he is in a special needs class. The school board hates me , the doctors hate me , Im ruining my child by not seeking help for him,try that one! Im not against certain meds, and Iam for anything that can make my sons life better, but the question is what? My answer is to all of these is that we have it, there is no cure for it, we deal with it as it comes day by day,there is NO pill to change it,and we have to learn together how to deal with it. Especially my son has to learn how to deal with himself, how can he if symptoms are masked by meds. I have a very challenging ,HAPPY, loving ,for him,well adjusted little guy who has many talents and special gifts ,and as a mom I could not be happier and feel very blessed,Im tired of the autsim rollercoaster and in retrospect,,just roll with it ! Its kinda a fun ride,,,,,

  4. Kristine Byer
    September 27, 2011 at 12:28 pm

    I have seen this with my son’s doctor. I like that she has me and my husband very involved in the decision making of my son’s health. I was the one that made the decision to talk about getting him on medication. When I felt I was not getting the care from the family Dr. I went to the psychiatrist located in our town. She is wonderful she works with us and together we come up with an ideal plan for my son. She asks me if I think the dose is working or should we increase it. I feel this is amazing; she of course is not there all the time so to be involved is the best thing for your children.

  5. Tricia Baker
    September 27, 2011 at 12:38 pm

    Sadly, I haven’t been as lucky as you guys and my son needed medication. I love how you ended your comment with THANK YOU at the end. So condescending, as if parents like myself didn’t try every other diet coming down the road for my son. It didn’t work. Non of them did. All children of the spectrum are different, and if you weren’t so ignorant and looking down on others, you would know that. I guess I should be the same as you and lump in to the Jenny McCarthy mentality mothers, who have “cured” their children with their “autism whisperers” and “magical diets”. Think about what other parents are feeling and going through before you type. I, like the parents in the article above went with medication with a plan and behavior modification and haven’t had to up his doses in 6 years and that’s with puberty, weight change etc. and now we are weening him off of it as we planned at 13. What’s your plan for regression? Let him muddle through? Change in his IEP, More support? Where’s the proaction?? Diet is no substitute for behavior modification.

    • jenifer
      September 29, 2011 at 8:23 am

      I feel the same as you. We just came to the decision that our ten year old daughter needed medication to make her life better. She is high functioning autistic and has a very hard time transitioning and also her sleep patterns are very erratic. She has also entered puberty and it seemed during this time we have seen some regression.
      I have tried the diets and she has had early intervention since the age 3 so medication was not a quick fix. It is only week one on the Abilify so I’m hoping it will calm her anxiety. It has already helped her with her sleeping. My son who is 12 also is on the spectrum but has not had the same issues as my daughter and we have not had to use medication for him.

  6. arlena
    September 27, 2011 at 12:59 pm

    so true Katie, many times medication is offered as a quick fix solution for our children instead of offering an alternative treatment such as cheledon and gluten free diets? we as parents do the research and so it should be up to us to decide what will be the best treatment for our children..medication puts a temporary bandaid on the situation regarding parents dealing with the behavioral issues attributed to autism and adhd..and many times a parent is told over and over that medication is the answer…interesting article..

  7. September 27, 2011 at 1:39 pm

    I have an 8yr old grandson who is failing the second grade for the second time. His parents asked the Dr. to put him on Adderall for add, it has helped a little. I have done alot of reading and researching autiusm and Talon fits the Asperger’s syndrome to a T, but his parents see that as a mental defect and will not try to get help. He has a hard time looking you in the eye, he is very angry, panic’s when he does not know where someone is if they leave the room, he cannot make friends but most of all he is so sad and blames himself for any problem that comes up. We Live in Natchez, Ms. 39120 is there anyone I might could get an appointment with, I feel I can convince my son if I can get enough information to convince him. I am extremely worried about Talon because he pushes other kids into being mean to him or hitting him and is convinced everyone hates him.

    • David Brockway
      September 27, 2011 at 5:44 pm

      LDaniels-We also live in Mississippi (Hattiesburg). There is no support in this state. My son has been diagnosed Asperger but we traveled out of state to get the diagnosis. We homeschool since there is no support in our local school system. We went to the AMEN clinic in Virginia and travel to new Orleans every Friday for neurofeedback therapy. Of course insurance won’t pay for anything. I feel your pain as my family has fought this for 14 years.

  8. September 27, 2011 at 8:54 pm

    Can I first ask you to add as a friend on fb.. I have a adult family member with aspergers genius, they have had a cocktail of very strong drugs after having total melt down doing a levels at 19. It’s very difficult to say if it’s ryt or wrong. With the meds they can connect,but are ag.gressuivue and many other problems.with out they withdraw into their own world and get ocd,the best meds are opiate or cannabis,but what ever your view I have seen how it causes the receptors in the brain work,and how without the drugs they are even more vulnerable

  9. Austin mom
    September 27, 2011 at 11:30 pm

    I find you anti med parents amazing….I do not think meds are the only answer, however, they can be a very effective tool in the tool box for many kids on the spectrum. Have you ever read anything by Temple Grandin or heard her speak? She is one of the most accomplished autistics on the planet. She swears by her anti-anxiey meds, and says she never would have been able to accomplish what she has, without them. Keep an open mind people!

  10. September 28, 2011 at 7:24 am

    Let’s face it, until Mr Obama, NIDA and the DEA allow us all to be adults about it, the real medicine is not even talked about (at least publicly) by those who should be open about it.

    All serious autism scientists know about it.

    Cannabis therapy cannot be ignored.
    MDMA therapy cannot be ignored.

    For what it’s worth, yoga should not be ignored either.

    • Julia
      September 28, 2011 at 2:38 pm

      THANK YOU!!!!!! So my comments kept getting removed, WHY? Possibly because MARIJUANA WORKS! I was even trolling, I was simply asking if anyone knew about its uses, but now that I’m skeptic about this organization, I just want to spread the word that this plant is actually a NATURAL solution to your problems, NOT the pharmaceutical drugs you are spending your money on!

      • Julia
        September 28, 2011 at 2:47 pm


      • michole
        October 2, 2011 at 4:10 am

        Hey I find your quote very interesting, have you ever tried it to be true, because that would be great. I have a 10 year old autisic son and he has been on several medications and frankly I wish he didnt have to be on any so please tell me your secrets

  11. Katie Wright
    September 28, 2011 at 9:08 am

    This is not a black or white issue. My son absolutely needs medication too! He gets IVIG every too weeks and is so much healthier for it. Christian also takes an immune strengthening drug.

    I think the point parents like me are making is that most doctors go right to medication because they are uninformed about other interventions. In some cases medication is the only answer but not always. AND we need to invest in long term health research on the effect of SSRIs and anti-psychotics on kids. There is very little literature on the subject.

    Temple Grandin has also stated that eliminating gluten from her diet tremendously improved her health!

  12. September 28, 2011 at 9:43 am

    My son is 9 has ADHD and Asperger it took 3 years to diagnose and another to decide medication may help. My decision to allow for medication was due to the fact if i had turned it down I would of had a complete breakdown and may of lost him forever. I am a single mum as his Dad could not accept him and could not cope so I am the one that deals with everything ALONE. he is still the same little boy I love so much but without the aggressive outburst ,and i can now take him with me when i shop it has made life for us both so much better he even said himself Iam glad that little man inside my head has gone

  13. faith
    September 30, 2011 at 6:49 pm

    It took a couple of years of an awful quality of life and every fad known to man for asd and adhd and finally I accepted that meds were a helping tool to therapy rather than an evil. My son is getting a’s in school and his anxiety and aggression is low now. Our family can enjoy each other again. My youngest is on the spectrum too but we aren’t even considering meds he is different from his brother. I am hfa an believe me swear by my meds for anxiety. The hardest thing is judgment from other adults who don’t understand the enormity of the decision nor the wrestling with emotion and guilt.

  14. michole
    October 2, 2011 at 4:24 am

    You guys are right, my 10 yr old autisic son is very hard to deal with, he has been diagnosed for about 5 years now and I to had a hard time placing him on meds. Then I realized it wasnt about me, he needed help and it got worst and worst until I felt that was my only option or lose my son to himself. He was self distructing in front of my eyes literally and all the tears I cried could not fix him. So I prayed about it and I began trying medication. For a while the medication worked fine then the side affects of angry hit and I had to switch him, don’t want to keep doing that either so I keep praying asking God for the answers.

  15. Sharon
    October 3, 2011 at 11:21 am

    Here is a major part of the ASD issue–parents fighting parents and ideas conflicting. Regardless of what you believe, you can NOT say that ASD affects each individual differently and then berate someone else for their decision for treatment of that specific individual. This is a big reason why we aren’t further ahead with understanding ASD–we’re too busy fighting each other’s idealogy instead of uniting to address real issues. Look, medication assists my son, period. We put off that treatment option for years. Lynn (above article) was one person we spoke to about that ultimate decision. It isn’t perfect and it isn’t the only thing we have tried/use. However, when my 5 year old son ASKS for his medicine himself–it has to make a difference for HIM. It may not work for your child or for others; but don’t berate parents who feel it makes a difference for their child. And for those who will criticize our choice, my son doesn’t tell me when his other health issues are bothering him–but does actually use words to request his ADHD meds. This is a child who shouldn’t be able to express that need, yet he does. For us, that was the truest test of whether it was the right decision for him. Don’t enter into any decision lightly, don’t let others decide for you, and don’t stop looking for additional supports regardless of what choice you make. However, let’s try to stop the negativity–we get enough of that from society in general about our kids.

  16. March 5, 2012 at 7:54 pm

    muitos tem duvida que o facebbok é uma das rede sociais mais poderosa na internet, porem sera uma explosão para o nosso seculo. muito bom seus conteúdos.

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