Experiences of ADHD-Labeled Kids Who Leave Typical Schooling
These kids and parents manage ADHD better without conventional schooling.
Posted Sep 09, 2010
Several weeks ago I posted a call for stories about children who have been diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) and have been homeschooled, unschooled, or "free schooled." I received 28 such stories and subjected them to a qualitative analysis.
My analysis of these stories suggests that (1) ADHD-diagnosed kids can do fine without drugs if they are not in a conventional school; (2) the ADHD characteristics don't vanish when the kids leave conventional school, but the characteristics are no longer as big a problem as they were before; and (3) ADHD-diagnosed kids seem to do especially well when they are allowed to take charge of their own education. In what follows I will elaborate upon and support each of these conclusions primarily with quotations from the stories. But, first, here are some numbers concerning whom the stories were about and who wrote them.
Of the 28 stories:
- 19 were about boys and 9 were about girls.
- 26 were written by a parent of the ADHD-diagnosed child; the other two were written, respectively, by the diagnosed person himself (who is now a 24-year-old man) and by an older sister of the diagnosed person.
- 24 were about children who were diagnosed with ADHD through a formal clinical procedure; the other 4 were about children who were labeled by medical or school officials as "ADHD" but whose parents, while agreeing that the child showed the full set of ADHD characteristics, chose not to proceed with formal diagnosis.
- 21 were about children who started their education in a conventional school (at least through part of kindergarten) and then left conventional schooling; the other 7 were about children who had never attended a conventional school.
- 21 described their nonconventional schooling as "homeschooling," 5 described theirs as "unschooling," and 2 described theirs as "alternative schooling" (one was described as a small private school in a home, "similar to homeschooling," and the other as "loosely based on Sudbury Valley").
And now, here are the three conclusions, along with some of the quotations that led to each conclusion.
Conclusion 1: Most children who had been medicated for ADHD while in conventional schooling were taken off of the drugs when removed from conventional schooling, and those who were never in conventional schooling were never medicated.
Research studies have regularly revealed that most children who attend a conventional school and are diagnosed with ADHD take stimulant drugs (dopamine reuptake inhibitors) as treatment. That is not true of this sample of ADHD-labeled children outside of conventional school. Of the 28 children in this sample, 13 were never medicated (these were mostly children who were never in a conventional school or who were removed from conventional school very shortly after the diagnosis), 9 were medicated for at least part of the time that they had been in a conventional school but were removed from medication after removal from school, and only 6 (21% of the full sample) were being medicated at the time the story was written.
Of the six who were medicated at the time the story was written, one was on Strattera (a non-stimulant norepinephrine reuptake inhibitor), one had just started his first day of homeschooling and was taking Vyvance (a stimulant), and the remaining four were still on stimulants even though they had been homeschooled for a year or more.
Here is a sample of comments made concerning children who had been removed from conventional school and taken off of stimulants. (Each bulleted comment concerns a different child. The numbers in parentheses refer to the story number in my notes):
• (#13): "We decided [when he was in 3rd grade in public school] to switch from Strattera to Adderall. We tried various doses but weren't getting what we needed, so we tried Vyvance and Concerta at various doses. They just weren't working for him. There seemed to be a short-term improvement, or at least a perceived improvement but it really didn't fix the problem. In all this, his anxiety was paralyzing, so, of course, we ended up on Prozac. ... As parents, it was exactly where we didn't want to be, having a drugged kid just to keep him in school. ... he was being pulled from class daily for being disruptive—making noises, interrupting teachers, asking to leave. He and his special ed. teacher were in constant battle. After a particularly ugly IEP (in January, 2009) we pulled the plug. We finished the year with homeschooling and he made more progress in 3 months than he had made in 3 years of traditional public school. We continued with the meds for another month or so but discontinued them from that point on."
• (#23): "My little brother was put on ADD medication at the age of 7, because he was not able to focus well in school or in his martial arts classes. I saw his personality immediately dull when they put him on the drugs, but he was much better able to function in organized learning settings. When he was 15, though, he took himself off of the meds, and only then did he realize, and begin to vocalize, that he had been having paranoid delusions for years as a result of the medications. As a 10-year-old, he was terrified during every shower b/c he thought terrorists were poisoning the water. My brother wasn't so disruptive on the medications, but he never excelled in school until his last two years of high school, when he attended a private school that was loosely based on Sudbury Valley. Now, he is a fantastic musician, is attending college, and has never had any more problems with delusions or paranoia. He hates the drugs he was put on and has a lot of lingering anger about it to this day."
• (#7) "At age 8 ½ we decided to try Adderall, because he was struggling with attention and learning... He developed severe depression at age 10 [while on Adderall]. He was placed on a few more drugs. Each drug seemed to make him better for a few months, and then worse. When a drug caused a side effect, he would be given another one to combat the side effect. ... He developed a B12 deficit because of the Adderall. This gave him obsessive-compulsive behaviors, and we had to give him B12 injections. ... Then [after altering his diet and removing toxins from his environment] we weaned him off of the Adderall. There was no difference in his focus or activity at that point. He was/is fine. We continue to homeschool him. ... It was just the best thing we could have done for our child. He is now 16 and planning to go to college."
• (#22) "By 4th grade (this time a private school w/ an advanced curriculum) her 7 teachers WANTED her tested. We tried Ritalin for a few months, but it only resulted in a daytime compliant zombie that wanted to work even harder at night to pursue her knowledge. By spring they asked for a conference, refunded our deposit for the coming year .... They agreed she was a classroom mgmt problem, because she could do anything but listen." [The story goes on to describe the success of homeschooling, without drugs, and the fact that she has been accepted to a four-year college.]
• (#1) "And now that we are homeschooling (and he is thriving academically, socially, and behaviorally), medication is no longer a subject of consideration. We are excited about homeschooing—it has changed our lives for the better; we have our son back."
• (#2 concerning a boy who had been on various drugs in 3rd & 4th grades in public school after a previous period of homeschooling without drugs): "We pulled him out of school and went back to homeschooling. I took him off the meds to get a baseline on his behavior. Things improved for him so quickly that I never restarted Rx medications."
• (#14) "As a child, around age 5, I was diagnosed with ADHD. I was put on Ritalin and continued on the drug until the age of 11. After coming off the drug my parents noted that I was less angry and generally happier with what was going on around me, as well as less prone to tantrums. At the end of 5th grade my parents made the choice to homeschool me. I was homeschooled from grades 6 to 10 [without drugs] and during that time I pulled ahead in my math work and got A's on all of my tests. I was able to study how I wanted to, fidget when I wanted to. . .. Then [beginning with grade 11] I was returned to school [for some but not all courses]. ... I was [then] put back on a new form of Ritalin. We tried it for a month, and I went into a severe depression from the effects. After a month I was pulled back off it and that was the end of talks about drugs for the condition. ... I am now 24, married, and expecting a child. I went to college after my senior year ... and joined the Guard. I have noticed in the course of my life that I am calmer for the most part now. I still have urges ... not what I consider bad urges, but urges to say what is on my mind and to express an opinion whenever I can. ... Overall, I am happy. I love my life, my wife and my family."
In contrast to these quotations, those who have kept their child on a stimulant after starting homeschooling report the drug to be very helpful. Here are the three most positive pro-drug comments:
• (#6) "We tried Concerta, but he went crazy. Eventually we tried Strattera (a non-stimulant ADHD medication, a norepinephrine reuptake inhibitor) and it helped so much. He now has that second to think about what he's going to do and he makes better choices. No more temper tantrums, throwing things, hitting, or reckless behavior."
• (#10) "Off meds she is inattentive, argumentative, and unpleasant to be with. On meds she is productive, fun, and kind. She does have the side effect of appetite suppression, so we have to get creative to get enough calories into her. That is easily accommodated, though, and we have been happy with her progress both socially and academically in the three years that we have homeschooled."
• (#27) "Once the drug [Focalin XR, a stimulant] kicked in, everything changed. He not only grasped concepts, he remembered them. He flew through three years of math in six months. He will start high school in the fall, with over 20 hours of high school credit, and honors-level high school science under his belt [from his homeschooling years]. He is becoming the brilliant kid I only saw in flashes before the drugs."
Conclusion 2: The children's behavior, moods, and learning generally improved when they stopped conventional schooling, not because their ADHD characteristics vanished but because they were now in a situation where they could learn to deal with those characteristics.
Only two or three of the respondents reported that the ADHD-like behavior disappeared when the child was removed from conventional school. The great majority said or implied that such characteristics remained but were no longer such a big problem, primarily because, out of school, the child could be active and self-directed without being disruptive and had opportunities to learn how to cope with his or her personality characteristics. Here are some relevant quotations.
• (#16) "He learns fine as long as he is moving. I have the feeling that in a formal mass education setting, the focus would still be on getting him to sit still. As it is, he would be entering 8th grade in the local government school, but he's doing sophomore/junior level work and even has some AP credits. He's teaching himself German and Latin because he wants to. I have no desire to squelch his joy of learning just to get him to sit still! ... He's well adjusted socially and behaves appropriately. However, when he's with other kids with ADHD, we notice they sort of snowball each other's behaviors."
• (#17). "She is a terrific free-range learner. She is sometimes afraid that she is 'behind' and will find websites and books describing what she should know and just devour them. She was reading on an 8th grade level at 3rd grade 3 years ago, so she's reading somewhere on a high school level now. ... Her behavior is normally excellent. Sometimes she has outbursts of exuberance that can be both inconsiderate and difficult to stop, like running through the house shouting late a night."
• (#18). "I think the real advantage of homeschooling has been in the development of my son's social skills. He is a thoroughly nice person, both kind and empathetic. I just don't see how he could have learned to socialize as well at a school where he was being made to feel that he was unacceptable all day."
• (#12, about a boy who at age 5 was diagnosed with ADHD, Sensory Integration Dysfunction, and Pervasive Developmental Disorder and who began homeschooling shortly after that): "Today [at nearly age 16] he is an articulate, outgoing and confident young man. He takes no medication ... has no odd behaviors ... and impresses every adult he meets. ... His learning style is nothing that could ever be harnessed in the classroom. He almost intuits how to fix everything from cars to air conditioners to ..." (This writer goes on to describe how her son is preparing himself for a career through apprenticeships in the trades and at an antique store, in ways that would not have been possible in school.)
• (#13) "His anxiety is gone [since leaving public school and starting homeschooling]. As far as schooling goes, he definitely has a hard time completing his work. He is indeed easily distracted. ... He's still impulsive and demanding but we can handle it much better than the school could and we're all less stressed for it. He takes some classes through local groups and museums and still has a hard time attending to the teachers, but he manages now that it isn't an all-day everyday prospect."
• (#20) "As I mentioned, my son's friendships are always volatile. While he loves being with them, his tendency to 'lose it' or be 'hyper' often gets him into scrapes and he will quite often fall out with them. Being out of school has allowed him to walk away when this happens, to come home, reflect on the situation, talk about it and to not engage in the downward spiral of anger and resentment through being with them all day every day. He is learning about life, about life skills and, most importantly, how to be a happy and fulfilled adult."
• (#24) "... her public schools years of K-3 were mostly disastrous. ... In response to repeated encouragement by the resource teacher, when she was in third grade we took her to a psychologist and came home with a diagnosis of ADHD and a prescription for Metadate. We tried it for about a week, and the testing results did show a noticeable improvement in areas such as short-term memory (from 0/10 to 5/10 on one test, for example). Nevertheless, we couldn't bring ourselves to continue the meds: she was awake until very late at night, had a glazed look in her eyes, developed a small rash on her thighs, etc. ... Instead we started her for fourth grade in a small private alternative school for grades K-7/8. It has about 14 or 15 kids and is like a big home-schooled family. ... Getting her out of public school was the best decision we could have made. ... And as for us as parents: before we bailed out for the world of alternative schooling, we felt like we were raising not a child, but rather a set of problems in need of a set of solutions. No more."
• (#28). "We started homeschooling in kindergarten. It was a disaster. Sitting down for 10 minutes a day for a lesson was like pulling teeth. She would weep and cry that she hated school. ‘Do you hate stories?' No. ‘Do you hate games?' No. ‘What do you hate?' Sitting DOWNNNNN! (Wail). I persevered through kindergarten, but with nothing to show for progress after a year of trying. For 1st grade I modified my style a little and let her do things like play Legos, doodle, or ‘sew' while we read. It helped a little. ... By 2nd grade I had given up. ... She was not learning to read. .... Then one day I walked in and she was reading The Chronicles of Narnia. It had just clicked, at around age 8. ... She still misspells atrociously. And her behavior in groups can still be very wild—she is so excitable and dramatic and sometimes scares other children a little. ... As I've gotten to know her better, I find it more and more odd that we label these children the ‘learning disabled.' She does naturally the things other children find so hard—word problems in math, seeing large complex solutions to problems, being a creative problem solver, having a unique perspective on a book she read. The things that are hard to TEACH. And she struggles with the things that are so easily remedied. ... calculators and spell-check anyone?"
Conclusion 3: Many of these children seem to have a very high need for self-direction in education, and many "hyper focus" on tasks that interest them.
A staff member who works at one of the Sudbury model schools emailed me this interesting comment about kids who had been diagnosed with ADHD before coming to that school:
"The ADHD label is applied to two very different sorts of kids. One type really has "Attention Surfeit Disorder." Most of these get deeply involved in exactly what they want to do... They do their thing—with other kids when it overlaps with other kids' interests, and without other kids when they are caught up in something that other kids aren't interested in. They get labeled ADD not because they can't attend but because they have no coping mechanisms for enforced boredom. ... The other type are simply physically active to the point of being problematic when quiet is called for. These kids may get themselves ejected from JC [Judicial Committee] or the School Meeting when they can't control themselves, and generally have long records for Running and Roughhousing and for Disturbingly Noisy activities. A combination of not calling unduly for quiet (most of these kids can be outside running and roughhousing to their hearts' content most of the time without bugging anyone) and a fair and reasonable JC that helps these kids discern time and place makes this problem less for us and gives the kids a sense of justice and time and place that informs them and lets them develop the ability to shift gears when quiet and serene are called for."
In the sample of stories I received, many of the kids seem to fall clearly into the first category. They seem to be kids who have an even greater need for self-direction in education than do typical kids. (If you are a regular reader of my blog, you know my view that all normal kids learn better in settings where they are in control of their education than in settings where someone else is in control.) In this regard, it is not surprising that the few kids in this sample who were still on ADHD medications during homeschooling seemed to be primarily those whose homeschooling was structured by the parent and modeled after the education one would receive in a conventional school.
A number of the quotations that I have already presented allude to the ADHD-labeled child's need to control his or her own learning. Here are a few more:
• (#3) "She chooses her own subjects and learning material daily. ... She learns much better if she can follow an interest and then hyper focus on it. She may pick something different, and seemingly unrelated, every day, and then tie that randomness into a major project that she will work on for a month."
• (#5) "It seems to be a matter of interest. If he is into something he will be focused and attentive for long stretches, if not he gets antsy. As an example, at our local homeschool conference a robotics club had a booth and had a robot there. My son would have stayed there asking questions about the robot for the rest of the afternoon if I had not moved him along."
• (#19) "We've been unschooling for several years now. He is 11... He is energetic and rambunctious at times, but often finds an interest that holds his attention for hours on end. The only time he fits the ADHD diagnosis is when he is bored or uninterested in something. Or he will be particularly rambunctious after sitting for long periods of time (whether he was engaged or bored while sitting still doesn't matter)."
• (#20) "After a while [of parent-directed homeschooling] it became impossible for him to learn. His anxiety increased to a level that we were forced to allow him to take anti-anxiety drugs, which he did for a few months. ... I then stumbled on self-directed learning/unschooling and have not looked back! ... It all made perfect sense. My son makes choices about what he wants to learn, he makes his own decisions about when and how he will learn it, he has learnt to define his own boundaries and takes responsibility for his own learning. If he is interested in something, we facilitate and provide resources, links, take him to places that supply the stuff he needs. He has taken a huge interest in music technology. ... He has produced some amazing music, he has found out about a variety of things he is interested in, he has self-defined interests which avoid institutions. ... He is wise, and he knows what choices to follow more than we do. Never would I have believed last year, when everything was so bleak and traumatic, that a year on, everything would be looking so rosy, and so absolutely fascinating as we follow just what it means to give your child the freedom to be themselves."
• (#22) "Our homeschooling started out with a curriculum program that she hated following. She would just want to read all of the history book. ... The piecemeal parsing out of knowledge that is "curriculum" always galled her. We started unschooling and everything fell into place. ... The "problem" is that she loves knowledge, wants to go at her own pace (fast), ignoring some subjects while pursuing others, and delving into specialized interests no one else her age has."
• (#21) "We began unschooling about four years ago. ... Today she's 14.5 years old. ... She is creative, responsible, fun to be around. She has no trouble reading and is skilled at using math in her everyday life. ... She has no signs of the problems the school district saw in her when she was 9 years old. ... She was in a large, chaotic class with several children who required one-on-one aids, the district was in the first year of implementing Everyday Math (which I called Everyday Crying) and the books they were giving the children to read, IMO, were boring. Tests made her anxious and she was overloaded sensorily by the noise and smells at the school, especially in the cafeteria. ... Since she's been home she's just bloomed. People who know her find it hard to believe that anyone ever questioned her intelligence or ability to focus. She's smarter and more responsible than many adults I know."
Before concluding, I should say that this is obviously just a preliminary study. It is, however, as far as I can tell, the only study that anyone has conducted to date concerning ADHD-diagnosed children's abilities to learn, and to cope without drugs, outside of the conventional school environment. My hope is that this preliminary study will draw the attention of the research community so that more formal, large-scale studies will be conducted. As a culture we are so used to thinking of school as the normative environment for children that we rarely even think about the possibility of children learning and developing well outside of that environment. I am very grateful to those who responded to my call for stories and took the time to write out, so clearly, the experiences of their ADHD-labeled son or daughter.
 See, for example, Mayes et al (2009), Medicating Children: ADHD and Pediatric Mental Health (Harvard University Press).