Our 9 year old daughter is high functioning on the autism spectrum. We applied for an IEP after seeing some suspiciously low test scores at school. Her overall intelligence (as scored by two separate child psychologists) is in the mid-90%ile.

Her IEP evaluation revealed a clear pattern of every teacher from K-3 consistently citing the same inattentive-ADD-like symptoms (which are common in kids on the spectrum).

We are consulting with a child psychiatrist who is a specialist with kids on the spectrum to begin medicine for ADD. She will be receiving Special Ed support through her IEP and we need her to be paying attention so she can catch up to where she should be.

Being autistic, our daughter cannot detect that she is behaving differently from her peers, not meeting classroom expectations, or that her work is below the potential her intelligence scores indicate. We didn't want to consider medication until high school, when she could be a more involved part of the decision and give better feedback about the medicine and the effectiveness versus any side effects, but her executive functioning scores came back so low and she's falling so far behind already that we just can't wait.

She told the child psychiatrist straight out that she does not want to take any medicine and doesn't see any need for it. She is more inattentive than she is hyperactive, so she doesn't get in trouble at school for behavior; her teacher merely spends a lot of time gently redirecting her back toward her school work.

How do we convince her that learning is the cornerstone of the rest of her life and break it to her that her autism is getting in the way of her ability to learn and that it's worth going through the trouble of taking medicine, even though the medicine comes with potential side effects and we may have a long journey ahead of us to find the right one and the right dose? We will need her cooperation to get any medicine down her, so we really need to sell her on the idea.

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    I have no direct experience with this, but my initial thought is that if she doesn't see the problem, can you do something to help her realize it's happening? IE, give her a pile of chocolate candies that she can eat once her lesson is over. Each time she isn't paying attention, take one away. Maybe once she can physically see what it costs her, it might be easier to reason with her that this is a problem and that it needs to be taken care of. – Becuzz Mar 22 '17 at 18:36
  • I am not into food as a reward system, but @Becuzz maybe on the right track. If you can use a token other than food -- do so, but use something very motivating. Make certain the person (Ed Assistant?) is very fair and following the guidelines exactly the same way each time. Your daughter might get one or two warnings before losing anything and those should be praises if/when she is on the right track. I'd ask for an account everyday, so that you can go over it with your daughter. Perhaps there is an extra if she gets more than X rewards. I had a student that loved marbles and worked for them. – WRX Mar 22 '17 at 19:13
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    As someone who has been diagnosed with mild autism and strong ADHD, I am so happy my dad and a social worker stood up for me. I only took medication for one month. Remember most doctors make money through this medication, and some think it helps, but the one month I was like a zombie. No interest in anything, quiet, nice in school to the teacher. But I wasn't myself anymore. If you choose to give her any meds, make sure to watch her closely, and make sure it doesn't change her. Now I am a functioning adult, without any medication. There are other ways! – Pudora Mar 22 '17 at 20:49
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    @Pudora Yes, we will watch her like hawks and have alerted her teacher and after school care about what we are planning so they can watch her too. I'm bipolar, so I've had a very long journey of trying medications with various awful side effects trying to find a combo that works. My bipolar meds change me somewhat. I have to live with that because unmedicated me is not an okay person. But I refuse to lose my wonderful, loving daughter to meds. If we can't find one that works without changing her personality, we will soldier on without. – SnappingShrimp Mar 22 '17 at 21:01
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    I keep almost not-commenting on this because I don't have professional experience with this, only personal, but it could change your kid's life forever so... Before medicine, have you made sure she's actually being challenged in school? I have a nephew in a similar situation and he told his teachers and parents finally, "No I know the answers, I'm just bored." – Ethan The Brave May 5 '17 at 12:37
up vote 8 down vote accepted

We couldn't wait any longer. Our daughter confronted us about why we wanted her to make her take "happy pills" and that it was silly to expect someone to be happy all the time. I told her that whoever told her they were "happy pills" was very, very wrong.

I then made a concrete analogy between her inattentive-ADD and her brother's colorblindness. Just like there are colors that her brother can't see, there are things happening in the world around her that she isn't noticing, like instructions her teacher is giving in class. She doesn't notice not noticing them, just like her brother doesn't know when he's seeing pale pink instead of white. I told her that the medicine would help her to notice the things that she's missing now, which would make doing her school work easier.

I asked her, "If you could give your brother a pill that would let him see all the colors, wouldn't you?"

She said, "Yes."

I said, "This is exactly like that: we want you to notice all of the things happening around you, because right now, you're missing important stuff."

When I repeated to her that noticing all of her teacher's instructions would make doing and finishing her school work easier, she was totally on board and enthusiastic with trying the ADD medicine.

I'm not sure how well the colorblind analogy will work for families that don't have colorblind members, but using a simple, concrete analogy made it easier for her to understand her inattentiveness and its impact on her. Once she understood the impact and the potential positive effects, she felt good about trying medicine.

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    Glad you found a solution that worked. I love followups on this site! – called2voyage Mar 29 '17 at 19:35
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    "she felt good about trying medicine" -- this part was so important. No one says it is forever or that if it doesn't help/work the person has to keep taking it. I think many people mistake this. She is a part of her own health team -- she does get to tell others how well it works -- or if it doesn't. – WRX Mar 29 '17 at 20:52

I was ADHD inattentive and did not receive medication for it (story for another time, but I am passed that now). My wife is ADHD inattentive and she may be mild ASD, and she started her medication as an adult (post 30). Of my 3 daughters, the oldest is ADHD inattentive, another is ADHD inattentive and mild hyperactive (though some days it seems like anything but mild). My other daughter might be ADHD, but she focuses better than either of her sisters, so we are comfortable with her situation and are not worried about her progress in school.

To preface, I am not a psychiatrist, but given my circumstance I am fairly well versed in ADHD. I am not as familiar with ASD. My wife is on the spectrum, but it presents more as quirks.

For starters, the things that don't work: Reward systems. ADHD, especially inattentive types cannot control their inattentiveness. Taking away things based on their inattentiveness just causes them emotional pain and frustration because the inattention is not due to lack of discipline. They are often very aware that "their brains don't work right". Which was the exact way I phrased my own situation and how I felt about myself the entire time I was growing up.

Try to imagine yourself walking down the street minding your own business and someone comes up to you and gives you a cookie "as a reward". ADHD Inattentive types don't immediately make the association between the action and the reward. They are capable of drawing the line after the fact, but they didn't earn it through conscious behavior. In this example, you were walking politely and not yelling, which you often do. In this case, you were thinking of something serious and were just thinking about it quietly. ADHD Inattentive types often lack impulse control and their behavior is often simply a by product of their current emotion, be it happy or otherwise.

If your daughter is ASD and ADHD, she is likely in the gifted range and capable of comprehension of the medication you are asking her to take. In your case, you will have to find a way to reach her that works for her. If you don't want to be authoritarian (which I do not recommend anyway as it won't work for long term results), then you will have to find a different way to reach her.

This is where it gets tricky. As with ADHD, ASD also comes with certain situations where a non ASD person doesn't understand why they just don't get it. For example, in my wife's case, she works very hard to compensate for her lack of being able to pick up on subtle social cues that many of us take for granted. Your daughter may be presenting a strong will given that, to her, you are saying that 2+2 is equal to 5. Meaning, if she can't see the problem, your asking her to take medication is something that doesn't make sense to her.

In children, there are often little brain hacks that parents can do to promote the right behaviors and one is trying to see where the kids are coming from so that rather than using "because I said so" you can build on the child's current understanding to guide them into better behaviors, even if you aren't giving them the full picture.

For example, one of my twins, the ADHD both types one, was trying to do an art project and was getting stuck on a tricky glue / string part (she is 7). My wife, in her sweet but very thorough and logical manner, tried to explain all the different moving parts, but my daughter just grew more frustrated. My wife's answer was patient, compassionate and totally accurate at every turn, but she was using so much explanation that my daughter was simply not following any of it. I came in and gave her a short, almost wrong answer, but she took my 5-6 word explanation, asked me one question, which I answered, then after a small protest of me saying no I won't do it for her and repeating the short answer I gave earlier, she tried it and it clicked in her brain. After that, every thing my wife said before, my daughter did. Not because she remembered what my wife said, but the trick at the start was all she needed to have the rest fall into place.

This may not work in the same way with ASD because often times they require the long deliberate path. This is probably where your circumstance differs from my own. I don't get to dive in and help my wife in the same way I can with kids, but I know that what works for her does not work with my kids or myself. In this way, I would recommend working with a psychiatrist that specializes in ASD. To work with your daughter, you have to know the tricks that work with ASD.

Convincing her that education is paramount is your own fear being projected on to her and will never work because it is being told at her. Repetition and structure is likely the best way to get her on board. Using habits and scheduled repetitive behaviors can help with both ADHD and ASD. However, if you are like me, disorganized, you'll have your work cut out for you because it will be up to you to enforce the structure. Consult with your psychiatrist, but maybe showing her all the work she is doing will establish a pattern that will allow you to ask if you can "try medications to see if they can help change the pattern". I am disclaiming the hell out of that because my own experience with ADHD shows me that repetition can have negative emotional consequences if done incorrectly. The goal is to move her up and forward, not just point out where she fails.

Final message, and the TL;DR version: Work with an ASD psychiatrist and also maybe an ADHD psychiatrist, but also trust your instincts. Medication for things like ADHD and ASD is not an exact science. Every human is different. Different drug tolerances, different brain chemistry, behavior, health, etc. There is no one magic bullet. Some people get over it with eating and exercise (me, mostly, as I said, long story) while others go their whole lives (my good friend) and never really feel whole and end up with ups and downs (medication side effects) that they hate. For our family, we have chosen adderall (stimulant) based on wanting to avoid the non-stimulant and antidepressant medication side effects. My oldest stays up later than we want her to, but we feel like that was already an issue before we started medication, so we only give her a single morning time delay dose. My wife, who is on a higher, fast absorbing dose of the same medication, sleeps fine.

There will not be a one size fits all answer for your question. Take whatever you learn, and like a puzzle, see if what they say fits in your life and circumstance. If it doesn't, do some more digging. If at any point you aren't comfortable with your doctor, consider getting a second opinion if for nothing else than your own piece of mind. You already have your daughter's best interest at heart, so you are most of the way there.

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    Your answer gave me a lot to think about. I think you're right that I can't convince her of the domino affect on her learning and yes, I am absolutely projecting into the future, which isn't appropriate. I had a crafting experiencing with my daughter exactly like what you describe with your wife and I like the approach you took to resolve that. Also, I would love to hear about your exercise/eating approach that helps you. The entire family is ADD (our son less so but he could still use a boost) and might benefit. – SnappingShrimp Mar 28 '17 at 18:09
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    Great post, I've got several AD(H)D family members and one ASD member. Unfortunately, it does require continuous work, even as an adult, and as you say there are no magic bullets. – called2voyage Mar 29 '17 at 19:33

It may be that you've left out key details from your description, but it sure sounds like you're rushing into this. Psychotropic medication should be a last resort, not a first one. Maybe your daughter is inattentive at school because the lessons are boring for her? It sounds like she simply isn't finding them interesting or challenging enough, which is a common problem for Aspies, and absolutely does not require or benefit from medication, but simply needs the teachers to take a different approach.

Please listen to your daughter on this. Instead of trying to convince her to take this medicine, respect her right to choose not to take potentially damaging and addicting medications that she may not need. Work with her, and with her teachers, to get to the bottom of what's actually going on in school, why she isn't engaging with it. Treat her like a small adult, with human rights, bodily autonomy, and probably lots of ideas about how school could be made more interesting or accommodating.

Aspies do sometimes drift off in lessons at that age, or get locked on to thinking about something else. A good teacher will be able to find a way to gently direct their attention back to the matter at hand (a bad teacher will shout, and make no headway whatsoever...)

I'm not completely ruling out that medication may help, but please, make sure you have exhausted every other possibility first.

  • Her diagnosis came after they removed the Aspie category from the diagnostic manual, but I don't think she would qualify as Aspie and that her function is a bit below that threshold. What I left out is that we have been struggling since she was a year old, when she stopped talking. We've done Occupational Therapy, Speech Therapy, and Play Group Therapy (which focuses on social interactions among peers). She seemed in tune with her peers for a couple of years, but now she is falling behind at an alarming rate. continued... – SnappingShrimp Mar 28 '17 at 18:19
  • ...Right now, she sees a psychologist for social/emotional growth. We've lined up special ASD tutoring for the summer months. Medication is not our only strategy. Our hope is that medication is complementary to the behavioral modifications that we are paying for ourselves and also receiving from the school district. – SnappingShrimp Mar 28 '17 at 18:21
  • @SnappingShrimp -- I know many kids and adults that were helped by taking acting classes. They learned to act out emotions in a non-threatening way and were able to apply it personally. This has to do with your comment above -- not as an answer to your question. – WRX Mar 29 '17 at 18:56
  • This doesn't answer the question, but challenges the fundamental premise of medicating a child. Please edit to be responsive. – Acire Mar 30 '17 at 12:20
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    @Willow I love the idea of acting classes. We even have a Children's Theater in the city that does low-key (e.g. not for the Hollywood-bound) acting classes, so this is a real possibility for us. – SnappingShrimp Mar 30 '17 at 15:52

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