Recognizing Signs of Undiagnosed and Misdiagnosed Disabilities in Your Child Client

Vol 33 No 7

Christopher* entered state custody when he was seven years old. He had become increasingly unmanageable at home: engaging in sexualized, defiant, and self-harming behaviors, and he was prone to outbursts which he could not control. He spent the next five years in multiple placements: some hospitals, some foster homes. No one could handle him there either. 

School was equally bad: he was placed in a small special education class for kids with severe behavioral challenges, and his behavior remained out of control despite supports. After five years in state custody, he was returned home but that proved just as impossible. He remained defiant, prone to outbursts, and he engaged in “bizarre” behaviors that caused everyone concern. He returned to foster care as a teenager, and cycled through 13 foster care placements in less than a year.

By the time Christopher was about to enter high school, his social worker was getting desperate. Time was running out, and the situation was looking hopeless. Was there any way to help this boy? Was there anything they had not tried?

The social worker had heard that there was an educational consultant in Rutland, Vermont who had an innovative way of evaluating kids. This consultant, Dr. Trevor Tebbs, had had some extraordinary successes in “unlocking” some of the most impossible cases, and turning kids’ lives around. The social worker thought it was a long shot, but worth a try.

Dr. Tebbs, who has a Ph.D. in educational psychology, collected as much information as he could about Christopher. He spoke to the parents and caregivers. He reviewed all the school records. Then he met with Christopher at length and gave him a battery of tests.

Dr. Tebb’s conclusions astounded everyone, except Christopher. Christopher had the potential for gifted behavior. Christopher had often spoken about “not belonging” in special education classes, and the evaluation provided the starting steps for Christopher to view himself in a different light.

Christopher started school that fall in 100% regular curriculum classes with regular kids. With supports in place for needs associated with a lack of appropriate education over the years, he immediately started getting straight As in school. As his self-esteem grew at school, his outbursts in his new foster home subsided. There would be challenges ahead for a boy who had had such an unstable and self-esteem-destroying childhood, but Christopher now had one thing that everyone had long thought impossible: hope for better future.

Lawyers can help youth who are misdiagnosed or undiagnosed.

For children in the legal system, the child’s lawyer is often the last resort. Once a youth is involved in the juvenile legal system, the lawyer is in a unique position to recognize disabilities and challenges and arrange for testing and diagnosis. Sometimes, the issue might be Christopher’s issue—that a gifted child has been misdirected to special education and is acting out. Often, the issue is that the youth has undiagnosed disabilities and is simply not getting needed supports in school and at home. 

Most lawyers assume that by the time a child gets into juvenile court—whether as a truant, delinquent, or an abused or neglected child—the school has appropriately assessed the child’s needs. However, that may not be the case.

Parents can refuse testing.

Under the federal regulations that control special education services, parents have an absolute right to refuse testing.1 Once a parent refuses testing, the only option for the school is to retain a lawyer and sue the parents, either as a part of a due process proceeding or other proceeding permitted under state law. Few schools have the funds to litigate these issues; and, even if they were to do so, the parents could simply move out of the district to moot the case. 

Abigail Dillon has been the Director of Special Education for the Windham Central Supervisory Union school district in Vermont for 30 years. Her rural district covers over 350 square miles and includes a number of schools, with student populations ranging from 15 to 400 students. According to Dillon, once a parent refuses testing, there really is nothing that a school can do. Dillon explains that many parents, especially those with disabilities themselves, are afraid that their child will suffer stigma if the child is diagnosed with a disability, and they have a right under the law to refuse testing. A special education case manager can try to encourage the parents to consent to testing, but testing cannot be compelled.

If a child in court has no IEP and no 504 plan, a lawyer should never assume the child does not need additional supports in school. Dillon recommends that every child who is chronically truant or delinquent should have a full disability evaluation by a clinician qualified to evaluate developmental disabilities. A child’s lawyer can use the court process to make that happen, and there really is no down side. In delinquency matters, for example, the lawyer can arrange for testing privately, and decide later whether to share the results with the other parties.

An accurate evaluation makes a difference in a youth’s life.

A public defender in Vermont represented a pre-teen boy who was charged as a delinquent for engaging in sexualized behavior with female age-mates. Although the boy’s behavior was not very egregious, the prosecutor was concerned the boy could be a sex offender in-the-making, and was convinced the boy needed the kinds of intervention and support that the juvenile criminal justice system offers.  The boy had no disabilities: he was not in special education, and he had neither an IEP nor a 504 plan.

The boy’s lawyer had a different view. The boy was incapable of making eye contact, and he could not conduct a back-and-forth conversation. Was he autistic? The lawyer spoke to the boy’s parent, and the parent said the school had always said he was autistic but the school was wrong and so the parents never let the school do the testing.

The lawyer explained to the parent, that in this case, where the boy was charged with delinquency, it would be helpful to him if he were on the autism spectrum because it would explain his conduct. The parent reluctantly agreed to the testing, and the lawyer arranged for it. The results came back: the boy was on the autism spectrum and had great social difficulties. 

Far from a sex offender in-the-making, he needed help with social and communication skills. He was put on an IEP at school, the necessary supports were put in place, and the prosecutor dismissed the delinquency case. The boy needed the kind of help available at school, not the help offered by the juvenile justice system.

The boy’s lawyer was familiar with the signs of autism. The fact that the boy could not make eye contact and could not conduct a back-and-forth conversation raised concerns. The lawyer saw the signs, and got the testing done to confirm he needed an IEP rather than delinquency proceedings.

Lawyers need training to recognize signs of disabilities and wrong diagnoses.

Anna Saxman, deputy defender general for Vermont, believes juvenile attorneys need to be trained to recognize the signs and symptoms of learning disabilities in the youth they represent, as well as how a diagnosis might affect the representation. Even if a client has not been in special education classes or on a 504 plan, she believes there may be issues which have not been properly assessed. She encourages lawyers to get school records and prior psychological testing results, and to consider whether an independent evaluation would be helpful.

Lawyers should be trained to look for common disabilities, such as autism, traumatic brain injury, and post-traumatic stress disorder (PTSD), and to also consider whether gifted children have been wrongly labeled as disabled.

Lawyers are often the youth’s last resort. This is the last chance to get it right, and the lawyer should always take the time to think about whether the child is undiagnosed or misdiagnosed.

Youth who perform at grade level often fall through the cracks. 

Schools naturally focus on children who need help achieving at grade level. If a student is achieving, but has no friends or is extremely quiet, no one may notice. Many kids are quiet or shy; clearly, they all do not require a diagnosis of a disability. But many students who do need communications and social skills support fall through the cracks.

Another recent case involved a 19-year-old youth charged as an adult with statutory rape of a 15-year-old girl. When his lawyer met with the young man, he was unable to make eye contact or carry on a conversation. Although he was intelligent (he graduated from high school with good grades), he was unemployed and he never communicated with anyone outside his family except online. He liked to play online video games, and his only “friends” were the people who played the games with him online. He had never met any of his “friends.”

In contrast, the girl who was his “victim” had actively and aggressively sought him out when she met him in a public place. A few minutes later, they were having sex in the bathroom —at her request, even though they had never met before.

Although the young man had graduated high school with good grades, his lawyer believed he was likely on the autism spectrum, so she had him evaluated. Extensive testing showed he had undiagnosed traumatic brain injury in the frontal lobe, which caused severe communications and social disabilities much like autism.

Suddenly, the case was no longer the case that had been charged. The boy was, in fact, the vulnerable person in this situation—a young man without friends who was lonely and desperate for friendship. When the girl sought him out, she was essentially the only person who had ever paid him attention in person. He undoubtedly lacked the social or communications skills to say no. The prosecutor dismissed the case and his family worked to get him the therapy and social skills he needed to have a full life. 

Undiagnosed giftedness can cause behavioral problems.

Another concern is Christopher’s issue: undiagnosed giftedness. Dr. Tebbs explains that Christopher’s situation is common. Characteristic traits and behaviors of highly able and creative young people are often misunderstood and inaccurately diagnosed. Dr. Tebbs wishes evaluators could be trained to look for strengths and recognize potential failure and disability. Such a lack of knowledge and understanding by the evaluator may lead to misdiagnosis and inappropriate or even harmful interventions. For example, in Christopher’s case, placement in a lower-functioning environment with low expectations led to his disengagement and problem behavior.

Dr. Tebbs has noticed the problem often starts when children are first tested in the early grades. One reason is the Wechsler Intelligence Scale for Children (WISC) includes tests of processing speed, and lower processing speed scores can have a considerable effect on Full Score Intelligence Quotas. This can easily lead to a misdiagnosis, and once a child is perceived as “disabled,” it is hard for any label to be removed. 

Dr. Tebbs has found that youth with certain personality preferences, such as those who are intuitive, perceptive, or introverted, typically require more time on tests. When determining the results from the WISC-IV, Dr. Tebbs often will use the General Ability Index, (GAI) which he views as a more accurate estimate of intelligence when assessing gifted children.

Tebbs sees the same phenomenon again and again. He has another student whom he assessed when the student was in 11th grade. The student’s reported WISC scores were in the 60th percentile, and he had been receiving special education for several years to support his writing “disability.” But, using the GAI as an alternative assessment score, Tebbs saw that his ability using the GAI score was more in the range of the 90th percentile. Tebbs conducted further testing and determined the boy’s cognitive ability was in the 99.7th percentile. The student was hospitalized with depression, after years of special education placements, before anyone realized he was gifted. 

Tebbs explains that people who work with children often misinterpret and form opinions simply based on observed behaviors. For example, one girl was considered for placement on an IEP based on an attention deficit disorder and a writing disability. When she was given writing assignments, she spent her time looking out the window. When other children were finishing, she started to write. When the teacher said it was time to stop and do something else, she melted down, acted out, and refused to write.  The teacher immediately determined she was distracted, could not concentrate, and there was a problem.

With the “typical” view of this behavior in mind, the child might be considered disabled and defiant. Many might look at this behavior and attribute labels like ADHD, oppositional defiant, emotionally disturbed, and/or learning disabled.

 Dr. Tebbs found, however, that the truth differed from appearances. Although the child was a chronological fourth grader, she had a reading age of an eighth grader. It became clear that she was not distracted looking out the window: she was concentrating deeply and organizing her thoughts in her head before she began to write. Once she had the whole paper outlined in her head, she began writing. But then the teacher stopped her and she became very upset because she had worked so hard planning to no avail. She explained to Dr. Tebbs that she decided never to write again because, “What’s the point?” 

Far from disabled, the girl was highly gifted. Once the school started to give her more time on writing projects, she started to produce written work that matched her true ability levels.

Tebbs explains that highly able youth who have been placed erroneously in special education classes can become extremely frustrated and develop behavioral problems. Tebbs believes that the failure to give properly-informed attention to these issues comes close to a form of child abuse. As Tebbs explains, “How might any adult feel, and/or respond if he or she were required to spend all day, every day, working in an environment where his or her abilities are considered irrelevant?” 

Misdiagnosis of gifted children is widespread.

One organization, Supporting Emotional Needs of the Gifted (SENG), is working to raise awareness of the misdiagnosis of gifted children. Founded in 1981 in response to the suicide of a gifted young man, SENG now has liaisons in 44 states and eight countries. 

SENG runs annual conferences to raise awareness of the challenges that gifted youth and adults face. SENG focuses on the misdiagnosis of gifted children and has established the “Misdiagnosis Initiative” to raise awareness through a YouTube video,2 pamphlet,3 and website.4 

Kathleen Casper is a SENG board member and the K-12 Highly Capable Program facilitator for the Tacoma, Washington public schools, as well as a lawyer. She explains that gifted children often act in ways that mirror disabilities like ADHD, bipolar disorder, and other disabilities. As a result, many gifted children are wrongly diagnosed and medicated. Some children are “twice exceptional,” meaning they are both gifted and face learning challenges, which complicates the diagnosis.

Casper believes lawyers need to realize that testing can be biased. One common problem with the “standard” testing is that the tests focus on verbal skills. Many gifted children often have verbal difficulties, which make their scores unreliable. In addition, Casper says tests that focus on verbal skills are often unreliable for multicultural children, who may score lower because they do not know the English words on the test. 

Casper says it is important to use nonverbal testing, such as the Naglieri Nonverbal Ability Test (“NAAT2”), that tests logic ability without relying on verbal skills. Using this test, Tacoma has identified many gifted children who previously would have fallen through the cracks.

In Tacoma, Casper says teachers are trained to look for the signs of giftedness, and to refer children for testing. She recommends two lists of common traits of gifted children as a guideline for what lawyers should look for in their juvenile clients.5

Casper explains that it is extremely important to diagnose gifted children because they need support. Gifted children often suffer from anxiety and “asynchrony” —large gaps between their strengths and weaknesses. For example, a 10-year-old gifted child may act like a much older child when discussing a topic of interest, yet act like a five year old in some social or emotional settings. Casper explains that gifted children have a hard time finding peers and struggle to fit in, and this can lead to increased anxiety, depression, and poor choices in behavior. Early intervention is important for the long-term success of these children.

PTSD is often undiagnosed or misdiagnosed.

Another common disability among youth in juvenile court is PTSD. Unfortunately, however, PTSD is frequently undiagnosed or misdiagnosed.

To be diagnosed with PTSD, the youth must have experienced a traumatic event. If the youth has not disclosed the trauma, there can be no diagnosis of PTSD. Instead, youth who keep their trauma “secret,” are frequently wrongly diagnosed with ADHD, depression, bipolar disorder, emotional disturbance, oppositional defiance, and other disorders.

One high school girl, who had been hospitalized with depression, got into a verbal altercation with other girls at school. A teacher put a hand on the girl’s arm to de-escalate the situation, and the girl responded immediately by punching the teacher. A few weeks later, the girl got into another verbal confrontation with students, and a male adult gently touched the girl’s shoulder to calm her down. She punched him as well.

In just a few weeks, this girl had two sets of criminal assault charges for punching adults who had merely touched her gently to try to calm her down. She had never behaved like this before. She had no prior record and no prior discipline problems at school. All of a sudden, she was a different kid: engaging in verbal confrontations with her peers, and now, assaulting adults for no reason.

Some months later, she disclosed that she had been sexually assaulted, and she was diagnosed with PTSD. Suddenly, her assaults were understandable: being touched by adults caused a PTSD “fight” response. She started therapy to treat her PTSD, and the man who sexually assaulted her was convicted and sent to jail. She has never again engaged in delinquent or violent behavior.

Lawyers need to be trained to recognize the signs of PTSD in children, and to know how to get the children the help they need to address the underlying trauma—even when the child is not disclosing a traumatic event. Extreme changes in behavior often may be caused by trauma, especially in youth in the juvenile system.

 

Conclusion

Lawyers who represent children are not trained psychologists, nor can they be. However, they should be trained to look for signs that a child’s diagnosis or lack of diagnosis is not correct, and to know how to get the appropriate testing and supports put in place. Lawyers are often the last resort for children who are failing, and a trained lawyer’s perspective can benefit the child and turn things around—no matter how hopeless the situation may seem.

Christina Rainville, JD, is the Chief Deputy State’s Attorney for Bennington County, Vermont, where she heads the Special Investigations Unit. She is also a former recipient of the ABA’s Pro Bono Publico Award.

 

This article is one in a series focusing on disabilities in child abuse and neglect cases. For other articles by Christina Rainville, visit the “Disabilities” article collection at www.childlawpractice.org

Endnotes

1. See Regulations of the Offices of the Department of Education, Office of Special Education and Rehabilitative Services, 34 C.F.R. § 300.300.

2. SENG’s YouTube video is available here: www.youtube.com/watch?v=9XN7IOteagI

3. The pamphlet is available here: www.sengifted.org/wp-content/uploads/2012/10/SENG-Misdiagnosis-in-Gifted-Children-Brochure.pdf

4. The SENG Misdiagnosis Initiative website is available here: www.sengifted.org/programs/seng-misdiagnosis-initiative

5. The checklists are available here: 

http://giftedkids.about.com/od/gifted101/a/giftedtraits.htm 

http://legacy.teachersfirst.com/gifted/spot.html

 

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