Not getting the help you needed as a child: Medical Neglect

Written by Renee Brush, Ph.D. and Linda E-F

The other day, I was giving feedback after testing a young adult who is in their early 20s. They stated that they wished their parents had gotten them the help they needed as a child because life would have been so much easier.

I felt that statement on so many levels. Linda and I have both talked about this on a number of occasions so we are sharing our experiences with this over the next two weeks. There is a term for this, and we call it “medical neglect,” which is when a parent doesn’t get their child the help they need.

Medical Neglect

When I looked up the definition for medical neglect for this post, the legal definitions came up first. The Virginia constitution (where I live) states, “Medical neglect occurs when there is the failure by the caretaker to obtain or follow through with a complete regimen of medical, mental, or dental care for a condition that if untreated could result in illness or developmental delays.” (22VAC40-705-30).

The statute further states withholding treatment is included in the definition, unless other forms of treatment are being used, the child is in a coma, or the treatment would prolong a low quality of life. The statute also gives qualifiers that would indicate neglect is not occurring, such as a teenager who has decided they don’t want the treatment or the family’s religious beliefs cause them to choose a different form of treatment. 

Of course, organizations keep track of these types of cases, just like with other types of abuse. In 2021 in Virginia, Child Protective Services had found, through their investigations, that 5,261 children had been abused (VDSS, 2021). Of those children, 1.93% - or approximately 101 children – had experienced medical neglect. Nationally, in 2018, 143 children (i.e., 8.1% of those abused) died as a result of medical neglect (Knox, Alexander, Luyet, Esernio-Jenssen, 2020).

Obviously, medical neglect is a minority of the abuse cases that occur. But it can still have major effects on the children and teens. That is why we are sharing our stories today. Parts of these stories will be repeat information from when we discussed trauma responses, but the focus here is on how we are affected in adulthood from not receiving the help when we needed it.

Fallen tree on Lake Smith in Virginia Beach, VA

Renee’s story

I honestly didn’t realize that I had much of an attention problem as a child until I looked back, although teachers sometimes had things to say about my behavior. I was always the good kid, so I never was a behavioral problem. And I am pretty smart, so I was blessed that the attention problems never affected my grades.

But, I remember I once had a math teacher who told my mom that I was always one of the first kids who turned in her classwork. The problem with being so quick was that I made a lot of careless errors, and she could not get me to slow down or to check my answers. I believe my mom talked to me about slowing down, though I can’t tell you if I did or not. In another math class, which I believe was in 8th grade right after we moved to a new town, I often was bored because I probably should have been in a higher math class and so the teacher talked to my mom about what I was doing when I should have been working on classwork a couple of times. I honestly don’t remember what I was doing that got me in trouble.

I remember in middle school I played softball. Initially the coach put me in the outfield. After some time, she talked to my mom about how I was always distracted and looking around. So when the ball came toward me, I never saw it and never caught it. At some point, she moved me to short stop where there is more action. I don’t know if I ever improved as a softball player. I do know I only played for one season, so I’m going to say I did not! I found the game very boring!

In high school I had a best friend to whom I spent many of my classes writing notes rather than taking notes from the lecture. This was especially true in Chemistry. It didn’t help that I didn’t really like that class. I don’t remember how I did in that class, but I’m pretty sure I didn’t get an A in that class. I think that class is the one that dropped me from being third in my class to fifth, which devastated me.

When it came to papers in high school, I always waited until the last minute to do the papers. Then my mom would type them up for me because I would have to go to bed. Always. I was very fortunate that I was good at writing and able to pull that off and still get good grades.

I don’t remember having to read too many books in high school. But I would spend whole days on the weekends and summers reading whatever book held my interest. When I was younger, Nancy Drew books were my favorites! I loved the suspense and always tried to figure out the mystery by the end of the book. I would finish books so fast. Except Little Women. I could not even get past chapter one. I found it so boring. But then my mom said that if I was able to stick through the first couple chapters, it would actually get more interesting. She was right. I eventually finished it.

My days of pleasure reading ended when I went to college and graduate school where I had to read scholarly books. Reading those books was not easy at all. Within minutes of starting any required readings, I struggled to stay awake. Even in my favorite subjects! When I was able to stay awake, reading was a frustrating process of reading and re-reading the same content over and over. It took forever to read what I needed to. So, I rarely read the material for my classes.

The other way I was affected, especially as I got an office in my postdoctoral fellowship, was that my desk in my office was often very cluttered and disorganized. But I could always find what I needed on it! And the office was never decorated or had personal mementos in it. It always looked like I had just moved in, even though I was in that office for two years. As I moved through life, my house was often cluttered and disorganized as well.  

As I said, I was blessed that I had the intelligence to make get through my programs and still make good grades. However, I received a lot of negative messages from the people around me, starting with my mom. The thing I remember that hurt the most that she would say is, “Renee, you are the smartest person and the dumbest person I know all at the same time.” And she would sigh with exasperation. She also would say, “You have a lot of book smarts but you have absolutely no common sense.” This last thing was something my first husband echoed. If you think these comments were hurtful, you would be right. To this day, I have to remind myself that I can figure things out on my own like common sense.

Throughout my adult life, I had several people ask me if I had ADHD like they did. When I would say, “No,” they would be surprised because they would say I did things that they did due to their ADHD. Eventually I started to wonder. I once asked my mom if she ever wondered if I had ADHD. She said, “No, because you could spend all day reading.” Unfortunately, that is not all there is to it.

In another post, I had also told you that I felt like I had spent much of my life depressed. I even admitted to a friend in the eighth grade that I did not feel good about myself. This friend spent a lot of the next three years controlling my life. My mom even commented on it and tried to warn me about her. When the friendship imploded, my mom encouraged the friend’s mom to take her to therapy, but never took me to therapy. In the last conversation I ever had with my mom, I asked her why she never took me to therapy after that friendship ended. I can’t tell you why I asked, but I did. She responded, “You were fine.”

The problem is… I was not fine. But I was really good at masking and pretending I was fine. I had to be with my mom. And the problem with masking is that I believed myself for a long time I was fine. I didn’t truly start getting help until I was in my 40s. And understanding how badly I had been hurt took many more years.

The ADHD not being diagnosed did not affect me terribly in high school, college, and the first time I was in graduate school because I had external structure that kept me in check. Between deadlines and controlling people in my life, the work got done. I couldn’t get bad grades, or I would get in trouble. So, I had to excel. Plus, my abilities were still above what was required of me academically, so excelling was still easy.

It wasn’t until I entered graduate school the second time that the problems became noticeable. I no longer had the external structure. My academic mentor told me there was no such thing as late, so I had no deadlines. And suddenly there was no pressure to perform. That program took me twice as long to finish as it was supposed to because of that. Had my ADHD been diagnosed prior to that, I would have been able to have appropriate strategies in place and I could have had medication. And then maybe I would have been able to meet the deadlines and complete the work in a timely fashion. I held a lot of shame for taking six years to finish a three-year program. And I also now have a LOT of student loans because of it. Actually, twice the amount than if I had been able to finish in the three years - IF I had known beforehand what was wrong with me.

Another fallen tree on Lake Smith, Virginia Beach, VA

Is this really medical neglect?

Those born before the year 2000 - or really when we were kids (so the 1960s and 1970s) - may have experienced some form of medical neglect. However, it was more akin to medical neglect through ignorance, tradition, or custom. Before 1990, ADHD was hardly heard of and many learning disorders were recognized but were not well measured or identified. Professionals were still learning about the intricacies of these issues, and a great deal was still misunderstood, especially about ADHD/ADD. If professionals did not fully understand these issues, how could parents?

The examples I have given in my story are based on the ADHD criteria. As a child, I made careless mistakes, was easily distracted, couldn’t keep my focus, was not observant, was forgetful, could only maintain attention on things I was interested in, and needed time pressure to get work done. These are all classic inattentive symptoms. And they persisted over years, so I met all of the criteria.

Before I took a seminar on ADHD, I was sure I had the old “ADD” with no impulsivity or hyperactivity. I knew I was not hyperactive. I have never been a “motor that goes without stop.” But, I forgot to tell you about the time my dad drove me to my aunt’s house five hours away and I talked to him the WHOLE time. Who knows about what?! I also was prone to interrupt people and speed and spend too much money and overeat. The list goes on. So, I did meet criteria for impulsivity. These days they call this ADHD with combined presentation.

But, when I was in elementary and middle school, they did not know as much about attention problems as they do now. And girls are consistently diagnosed later because they are less likely to be behavioral problems in school than boys. They are more likely to be just inattentive OR, like me, inattentive and impulsive.

So, even though my teachers and coach were talking to my mom about all of these various things I do that all together suggested that I have an attention problem, she did not have access to the ADHD criteria. Honestly, I do not blame her for missing the diagnosis here. I do still wish someone could have caught it and done something about it.

Honestly, I think neglect for parents in many cases will come in when teachers or school counselors tell the parents specifically that there is a problem and then the parents do not do something about it. That did not happen in my case.

I do believe that neglect occurred to some extent when my mom did not ask me if I wanted some help when my friendship ended. My mom knew that friend was controlling and manipulating me, but she made an assumption. She already was not a safe person for me to talk about any issues I had with her. The reality is she neglected all of my emotions. As I said, I was masking with her, acting like everything was ok. I honestly believe not taking me to therapy was a pride thing for her. This other mother’s daughter needed therapy but HER daughter didn’t, even though I was the victim.

And when I say I masked, absolutely nothing changed in my life. My grades stayed the same, my friend group stayed the same, except without her. In fact, the next school year (our friendship ended over the summer), I joined cross country and so did she. I was voted “Most Improved Runner” for the team that year. I was very proud of that because I worked very hard - largely because I was mad at this girl. I was always at the practices while she was not and yet she always ran better than me. I think I expressed my frustration to the coach once and he helped motivate me and I ended up getting better. So, ultimately, I was hurting but there were no outward signs of my distress.

Both of these issues went untreated and I still deal with the repercussions of both. Not being able to name the illnesses that I am dealing with left me believing there is something wrong with me in so many ways. And my mom told me there were things wrong with me, which made that worse. It is true that a lot of the unlearning I am doing now is damage caused by her.

So, if I ask if this was medical neglect for me, I definitely would say no for the ADHD, but perhaps yes for not putting me in therapy as a teen. Now, having said that, I doubt she would have gotten in any legal trouble for that because, even though internally I was having a hard time, nothing outside changed. Unfortunately, the truth is that sometimes parents don’t make great decisions and then we have to figure out how to deal with it as adults.

And that’s why I’m writing this blog.

References

Knox, B. L., Alexander, R. C., Luyet, F. M., & Esernio-Jenssen, D. D. (2020). Medical neglect in childhood. Journal of Child & Adolescent Trauma. 13:256-258. https://doi.org/10.1007/s40653-020-00322-0

Virginia Department of Social Services. (2021). Child Abuse and Neglect in Virginia SFY 2021 (July 1, 2020 – June 30, 2021). Retrieved from: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.dss.virginia.gov/files/about/reports/children/cps/all_other/2021/CPS_Fact_Sheet.pdf