“Tell me a story about having ADHD at home, at school, and with friends.” That was the instruction given to 16 college students with ADHD by researchers from the University of North Carolina, Greensboro. They were trying to learn how it felt to grow up with ADHD from a child’s perspective. In an enlightening report published in the Journal of Pediatric Nursing, the students described their childhood and adolescent struggles with loneliness, isolation and misunderstanding, as well as their successes with supportive environments and strategies.

The predominant theme in each of their stories was, “I have always felt different.” The antidote was empathy and support from parents, teachers, and friends.

Parents

Getting along with parents and getting to know themselves is difficult for all kids. These students believed, however, that children with ADHD had more trouble coming of age than typical kids.

Attention-related problems often caused frustration, misunderstandings, and arguments with parents. Because of their distractibility, hyperactivity, and forgetfulness, many students could not finish—or at times begin—household chores, such as keeping their rooms clean or doing laundry. Sometimes they were not even aware of what needed to be done. Many students recalled how their distractibility and forgetfulness were at odds with their parents’ expectations and consequently triggered arguments and distress.

Doing chores and stuff at home, I always had a problem getting things done. I never really finished anything. I always started things and then I’d go off…. I got distracted very easily doing chores. I don’t know if it was voluntary distraction…but we definitely fought a lot….

I like to read the newspaper at home on the weekends with my mom there. Sometimes I get so focused on the newspaper or what I’m doing that I don’t want to do what my parents have asked me to do, like the vacuuming or the laundry. ‘Cause they want it to be done, they expect it to be done and if I haven’t done it, then I have a problem…. Doing things for my parents and being aware of what needs to be done around the house are the only times it really gets to me or hurts me.

Parental requests to complete tasks were often seen as “nagging” and would lead to further arguments.

Quit nagging me, quit bugging me. And it would be just, “Clean your room, can you please pick up this, can you get your laundry out of the dryer, we’ve got to leave in 30 minutes, are you getting ready, come on, come on, get out of bed.” And I would just be like, “Leave me alone!”

Although students frequently described their parents as impatient, many understood and sympathized with how their ADHD impacted those around them and how difficult it must have been for their parents to deal with their behavior on a daily basis.

Most students, in fact, felt encouraged and validated by their parents. Parental support had a positive impact on the students’ self-esteem and overall wellbeing and helped balance the negative effects of ADHD (poor self-image and lack of academic success).

My dad just loves me. I can remember every Sunday morning getting ready for church. I would walk into his room, this was when I was little, and he would whistle at me…so, like, maybe helping me with the school stuff wasn’t his thing, but he made me feel like the most beautiful girl in the world, and for someone with ADHD, that’s huge because your self-concept is a lot of times deflated due to your academic success and not understanding some other things.

Another student remembered being consoled by her mother, after breaking down and tearfully sharing how deeply her ADHD upset her.

Mom was really supportive…. She was cleaning the bathroom floor on her hands and knees, and she was like, “Kerri, I did not know any of this. I’m so sorry.” And she just held me and I just cried and cried. And she said, “You are not different. You are beautiful and sweet.” And she went about affirming me and who I really am. [She said,] “I’m so sorry. I had no idea you felt like that.” I mean, it didn’t take away the problem, but it affirmed to me that she cared…. No matter how much I went to school and felt like…nobody liked me…when I went home, I knew it wasn’t fake. And it was a good place. There, I was loved; I fit in and I was fine.

The students were also appreciative of parents who were persistent and supportive in making sure they completed their homework. Whereas a typical child might come home, say he had homework, sit down and get it done, when a student with ADHD came home, parents had to ask a whole spectrum of questions just to find out what the homework was and whether it was completed.

You couldn’t ask, “what do you have for homework?” It was like, “do you have any homework?” “Yes.” “What is it?” “Math.” “What’s it on?” “This stuff.” “Do you have English homework?” “Yes.”

Students found this approach “incredibly helpful.” They also benefited from mothers who helped them organize and prioritize their time, reviewed their homework, proofread their papers, helped them use accommodations and strategies such as flash cards, books on tape, cognitive games, and motivational tools, and who understood when to cut back on their support and allow for more independence.

School

Students with ADHD felt different from their classmates and stigmatized for having it. Contrary to the expectations of their teachers, they could not sit still, pay attention, or grasp concepts as easily as typical kids. Other kids would ostracize them by calling them slow or retarded.

Special Ed teachers sometimes singled them out indiscreetly, publicly identifying them as having a disability. One student told a story of hearing her name announced over the school’s intercom system asking her to report to the Special Ed office. Another had a coach who called him stupid because he had trouble understanding instructions the first time they were given.

The students reported missing a lot in school because of their learning disabilities. They were forgetful and had trouble listening, focusing, completing homework, staying on task, and understanding the big picture. Many learned to understand their behavior and manage it by developing and using strategies with which they felt comfortable: For tests, some took extra time, worked in a quiet area away from other students, or used a computer instead of pencil and paper; at home, some rewrote notes or listened to lectures they had recorded to reinforce new concepts.

When teachers cared about them and spent extra time helping with schoolwork, the students felt less different and isolated and more like an integral part of the school community. Just as a supportive parent increased their sense of self-worth, a caring teacher made them feel important and their academic performance often improved.

Friendships

The students recalled that their ADHD had a profound impact on their ability to make, keep, and interact with friends. While understanding the rules of social interaction, many students had trouble following them. Distractibility, hyperactivity, and impulsivity impacted their communication skills. Some felt like outcasts and were disconnected in the social arena.

I dropped out in eighth grade for a year and a half because I was so unhappy there. I think it was more of a self-esteem issue and the respect. It may have had something to do with them finding out [about my ADHD]…people looked at me differently, like, oh, she has a disability, oh, she’s stupid, she’s retarded. I mean…I just don’t get things as easily as others. And I don’t think they understood that.

Some had trouble thinking things through before speaking; they would offend others by interrupting, making inappropriate comments or asking too many questions. One explained that in the middle of conversations, she would tune people out and start thinking about other things. Another described herself as sometimes talking “gibberish.”

I had a lot of people make fun of me. Most of the children around me, they always stayed away, as if there was something wrong. I always thought there was something wrong with me because no one really wanted to be my friend or to play with me.

Even friends would often tease the students about their ADHD, sometimes in a joking way but often in a mocking tone. Although the students tried not to become discouraged, it was clear that social interaction was a very complex area for them. They stressed the importance of having understanding friends who could help them cope with their challenges.

While describing childhoods filled with family, academic, and social struggles, the students were grateful for empathetic parents, teachers, and friends who gave them the support, strategies, and sense of self necessary to be successful in college.

This article is based on a study published in the Journal of Pediatric Nursing, Vol. 23, No. 1, entitled “I Have Always Felt Different: The Experience of Attention Deficit/Hyperactivity Disorder in Childhood,” by Mona M. Shattell, PhD, RN, Robin Bartlett, PhD, RN, BC and Tracie Rowe, RN, BSN. Eve Kessler, Esq. is an attorney with The Legal Aid Society, NYC and the President of SPED*NET, Special Education Network of Wilton, CT and a Contributing Editor of Smart Kids.