CEHL:

Overcoming The Diagnosis Of Obsessive-Compulsive Disorder: A Parent's Story

A note from the author:
My husband and I have an adolescent son who has been diagnosed as having “obsessive-compulsive disorder.”  After a long and somewhat painful journey, our son and we have come to feel comfortable with this diagnosis and we are quite optimistic about his long-term prospects.  But it hasn’t been easy. 

Recently, I came across a wonderful web site, entitled, “The School Psychiatry Program and the MADI Resource Center.”  It has a very useful section, which addresses many aspects of this disorder.  The web site can be accessed here:
http://www.massgeneral.org/schoolpsychiatry/info_ocd.asp .  I only wish I had been aware of this information years ago.  If we had, we could have made our son’s life and our own much easier.

Let me share with you what I think we might have avoided by being familiar with this site.

 

Note to the reader: this history as described by the child’s parent reviews what happened to this child and his family over time.  I asked an OCD specialist to comment about particular details and added her comments in bold throughout the text. ~Dr. Howard King

First signs

 

Our son was the first of three children and he had met the developmental milestones on a timely basis.  For example, he walked and talked within the appropriate time frame.  However, while other children were leaving behind “the terrible twos” and developing into more reasonable three and four years olds, our son continued to have tantrums like a toddler and remained irritable and hypersensitive to stimuli.  The weather (or food) seemed generally “too hot” or “too cold,” clothes were “too itchy” or “too tight,” music was often “too loud” and lights were often “too bright.”

As parents we always seemed to be adjusting something to make it feel, taste, sound or look “just right.”   As first-time parents we sometimes wondered if we were indulging him by catering to his many environmental requests.  However, he couldn’t be soothed and he was often very miserable, if things weren’t “just so.”

Reaching out to the pediatrician

At his five-year old checkup, I shared with our pediatrician my concern about his constant sensitivity to temperature, light and noise and asked for some guidance in this area, perhaps a book or some instructional tape?  Since I wasn’t really sure what I was seeing, I was even less sure what I needed as a parent. The pediatrician’s response was, “I don’t really know what to tell you.”

[The OCD specialist would encourage us to inquire about the following:

  • Do the child’s symptoms at any time seem to be interfering with his functioning?  If so, how much?
  • If they are slightly out of the norm, that is ok.  But if there are a variety of symptoms, that is beyond the norm.
  • Does the level of anxiety/distress seem more than merely episodic?
  • What kinds of situations seem to cause anxiety or distress for the child? 
  • How did the parents respond?
  • What is the child’s reaction if the rituals are interrupted or prevented?]

Trusting your instincts

At the time I took this at face value – after all, what did I know compared to my pediatrician?  In hindsight we actually knew a great deal about the idiosyncrasies of our child, and his behavior certainly merited further exploration.  The lesson here is: trust your instincts.  Even first-time parents can gauge when something is unusual in their child.  It is important to take an active versus a passive approach if you feel that you are seeing something that warrants professional assessment.  

Initial and subsequent reactions of the school

Our son proved to be a bright and happy kindergartener, but as early as the first grade, he began to display a hyper-focus on any project he was invested in.  At a first grade parent-teacher conference his seemingly exasperated teacher explained that our son had difficulty transitioning from one activity to the next.  She then held up his extremely detailed drawing (for a 6 year-old) of knights in a castle, complete with moat and drawbridge, horses, a surrounding village and countryside, saying, ”Look at this picture!” she said, “such detail!”

Clearly, as a teacher, she saw the value of the end product, but was frustrated by the time it took him to complete it.  No doubt his single-mindedness delayed the natural progression of the skills he needed to acquire. This problematic attention to detail was repeated throughout our son’s academic life and subsequently undermined him in his high school years as the workload increased with each grade.

This describes how OCD can end up becoming reinforced in terms of academics, musical instruments, and athletics.  There is certainly a need for professional development, for teachers, specific to OCD and how to manage it in the classroom.]

Changing sensitivities

With time, our son’s hypersensitivity to stimuli decreased, but his sensitivity to cruelty and injustice was unusually pronounced for a young child.  At age eight, he wept after reading the life story of Martin Luther King, and upon turning ten he surprised us with a projection of his life’s trajectory:  Coming to say good night on what had been a very happy birthday, we found him in bed weeping and saying that “now that he was 10, pretty soon he’d be our age – and after being that old, he would then die!”  Can a ten year- old have such an existential crisis?  [This is such a heavy burden for a child.]

At age fourteen, after seeing Shakespeare’s play “Othello,” he reported to us that he couldn’t see such plays like this because “they were just so tragic and make him too sad.”  Though we were appreciative of the power of this particular Shakespearean tragedy and his capacity to grasp it at an early age, we were mystified by the depths of his sentiment.  Were his parents able to be process these feelings for him to alleviate his distress?

He’ll grow out of it!

We began to wonder how he would weather the “slings and arrows” of normal adolescence? We approached the school guidance counselor who assured us this was simply the dysregulated but “natural” state of the hormonally challenged adolescent male.  [But this didn’t occur suddenly]] In hindsight, what our son was experiencing was a high level of anxiety and to a lesser degree, a sub-clinical level of depression, two conditions which often walk hand-in-hand with OCD. 

These conditions merit assessment and often treatment by a professional but are too often minimized or attributed as being developmentally intrinsic to adolescence and in general something they will “grow out of.” 

[Actually, there were sufficient manifestations to warrant consultation/diagnosis by an informed guidance counselor.]


Things deteriorate at school

At fifteen, things were not improving academically for our son. Despite his innate intelligence he continued to struggle in school.  As in many high schools, the nightly homework was robust – up to three hours on any given night. For a child with a compromised processing ability, three hours of homework per night was the equivalent of drinking out of a fire hose.

[Perfectionism in the child leads to being unable to complete work.  For him, each step has to feel “right” in order for him to move on to the next.  With regard to reading and writing, he has an obsessive need to be sure he “gets it,” even though this is an exaggerated expectation.]

Each evening, he would procrastinate and struggle to get his assignments started in a timely manner. When he finally did so, the execution was painfully slow, and he often needed an extension from the teacher. No amount of cajoling or offering of carrot (or a stick) made any difference. We arranged for a tutor only to discover the tutor was unable to “jumpstart” the homework process any better than we were.  Our son became demoralized and began to fail his classes.

[The OCD specialist reflects: What kind of standards might the child have been experiencing at home?  Were they reasonable or, like with any of us, tending to be somewhat perfectionist?  What does child/family do for fun?  Even if it is fun, is it really fun for the child?  It is possible that some transitions, often sudden or unexpected, can be subjectively experienced by the child as a lack of control.]

A turning point came for us when our son took an important math exam in Grade 10 and came home to report that he couldn’t finish it.  He was normally a competent student in math, so we asked him what had happened in the testing.  “I knew the answers but I kept erasing the numbers in my answers to make them perfect” he replied.  Our son couldn’t explain his wanting “perfectly formed numbers” but for us this was a major red flag signaling something was very wrong.

[The child has lost the forest for the trees.  He couldn’t focus on the task due to his excessive attention to detail and his need to getting it “just right”.  Not doing so often results in such children obsessing about details in such a way that it would have adversely affected the overall quality/outcome of the task.]

In hindsight, many children fail to report or underreport their OCD symptoms because of shame or an inability to recognize that their behavior is out of the ordinary. Simply put, they have no other frame of reference and are doing for them what comes naturally. 

[Some children feel incredible guilt or shame about the nature of their obsessions. They are almost always taboo and seem to be thoughts one “shouldn’t” have.  Of course, all of us have them.  We just don't get stuck on these seemingly violent, sexual, blasphemous, or morbid thoughts.]

Some of the compulsive rituals such as counting numbers in one’s head, putting things in order and tapping and touching objects in idiosyncratic ways become a part of a secret world that the child quietly inhabits.  In our son’s case, he had been compulsively erasing and redrawing numbers for over a year, but didn’t share this with us until confronted with a major time-sensitive exam. In addition, his reading began to slow down significantly.

[The OCD specialist asks: Were there any signs of this level of perfectionism at home, e.g. grooming or perfecting his home environment?  And what were his “peer” relationships like?]
  
A painful turning point

We learned (incidentally) one day just how slow it had become.  He happened to be doing his reading assignment at the kitchen table while I was making dinner. The two of us were involved in our separate activities, he with his book and I with my cooking.  He looked up at me and said despondently, “Mom, I’ve just read the same line twenty times. I’m never going to get through this paragraph!”

That was when we first learned that it was taking our son a whole hour to ready one page of a book!  Though I knew he was suffering, I had no idea just what I was seeing or how to help him.


Parents beginning to do research

 My husband and I were familiar with obsessive-compulsive disorder through articles but failed to put this together with our son’s behavior in the early years when he was less symptomatic.  After we discovered that his reading had slowed to a debilitating degree, we began to do some research on obsessive-compulsive disorder, suspecting that his “idiosyncrasies” were actually symptoms that were misunderstood both by us and the school.  We requested a “core evaluation” from the school, including academic and psychological testing by a specialist to rule out an undiagnosed learning disability.  

[A common misdiagnosis of such children is they have ADHD, because that is what educators often think about when such children seem distracted.  When that is happening, he is actually obsessing or mentally ritualizing about some triggering situation.  It is also worth noting that ADHD meds may often make OCD worse]]

Parents’ rights

Though school districts vary district to district in their willingness to administer testing, parents are within their legal rights to request testing and additional services if there is an identified problem. Two laws in particular, the Individuals with Disabilities Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 are designed to ensure special education or supplemental services for eligible children.

Another route, although much more costly, is private testing by an independent neuropsychologist. This testing sometimes yields a more complete picture of a child’s strengths and weaknesses since the tester works independently from the school system.  It
is important to note that the testing is only as good as the person executing it, and on any given day, such tests can be skewed depending on the mood, health and the motivation of
the student.  If negotiating with the school proves too difficult, parents can hire an “educational advocate.”  [Unfortunately, accessing such advocates may be difficult.]

Educational advocates

An educational advocate is a trained person with specialized knowledge who can help parents by serving as a liaison between medical professionals and the school staff.  How can an educational advocate help parents when they have a child with an obsessive-compulsive disorder or a similar condition?  A partial list includes the following:

helping the school develop an Individual Education Plan

attending school meetings with (or without) the parents

acquiring supplemental services or accommodations for the child such as untimed tests

note taking aids and tutoring

helping with organization and planning

and the waiver of certain academic requirements

Other support can be gained by contacting an organization known as CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder; www.chadd.org ), a nonprofit clearing house that provides education and advocacy for children and adults with Attention Deficit / Hyperactivity Disorder (ADHD). This group can also help parents to access services for children with emotional, neurological or physical disabilities.

Finding support within the school

I would suggest, however, that parents first search within the school itself for someone to take on this role informally, such as a sympathetic teacher or a member of the counseling staff, as was the case with our son who had a very supportive guidance counselor.  She developed along with the academic team a tailored individualized education program (IEP) that ultimately made accommodations for our son that enabled him to recover academically. Winston Churchill once said, when England was battling foes during World War II, “Never, never, never give up!”  Parental perseverance is required and is a critical success factor.

[It is important, of course, that such advocates have a good working understanding of the diagnosis to help the academic team make appropriate accommodations.]

The need for counseling

It is important for a child to receive clinical counseling if his OCD impacts him socially, which is sometimes the case. Frequently, children with OCD are quite sensitive and may be singled out by their peers, due to their (stereotypic) rituals being regarded as “weird or strange.” 

They may experience lack of social support in the home or at school and be labeled as unmotivated or lazy. In our case there was many a night when we unwittingly pleaded with our son to “just try harder.”  Even the best of educators, if the OCD goes undiagnosed, may conclude that a child’s academic decline is simply a failure of will, a lack of discipline, immaturity or an issue of character. Their written evaluations often reflect such a misinformed point of view.   

As for our son, his testing revealed he was academically solid, but the psychologist wrote in her evaluation that he was anxious and she suspected he was clinically depressed. 
Though validating some of our concerns, we were also dismayed by the fact there was no mention of obsessive-compulsive disorder. How were we to make sense of his history and current tendency for repetition and procrastination to the point of academic failure? 

Diagnosis and treatment

The diagnosis of OCD was ultimately made by the psychiatrist we found to treat our son. He was put on an anti-depressant, which helped not only his depression but softened his symptoms by decreasing his obsessions, leading to a marked (and welcome) decline in his compulsive behavior.  Our son’s reading improved as his eyes no longer read the same line over and over and he stopped “correcting” seemingly imperfect numbers by rewriting them.

Steady progress

Since he was now able to read at a normal rate and his attention span and concentration were back in the normal range, it was recommended by the psychiatrist that he be referred to a psychologist or licensed social worker who specialized in cognitive-behavioral therapy. By using CBT ( described here ) our son was able to identify the obsessive behaviors as they occurred, then employ a set of actions (the behavioral part) to help him delay and ultimately eliminate the compulsive part of the behavior.

By his last year in high school he was depression free – an honors student who was college bound.

Where he is now

It is now over ten years since our son was diagnosed with OCD. He is meeting young adult milestones both socially and academically and no longer takes medication, as he is
able to manage his symptoms by employing CBT methods. Our son now recognizes instances of repetitive behavior and procrastination and can “jump start” his way to action.  He has developed a sense of humor about his disorder and talks openly about it with family and close friends.

His perfectionist tendencies have made him a valued employee and this mother has smiled more than once to herself as our son’s boss has commented on his thoroughness and attention to detail.  From a parent’s viewpoint, we, too, have gained perspective and remain optimistic about our son’s future ability to manage this disorder.  But once we only had only limited information and few clear choices – and consequently had to struggle through a great deal of or son’s OCD before getting informed help  

A final reminder

You will have your own struggles, but you can become smarter about this very real medical condition and get your child help earlier by using resources that were not available to us.  The site, www.massgeneral.org/schoolpsychiatry/info_ocd.asp , had it existed when we needed it, would have helped us help our son.  It’s been created by one of the nation’s leading institutions to help parents like you and their children.  It will get you started on understanding OCD and provide you with the treatment options your son or daughter needs and deserves.

[Exposure and response prevention, described in the following section, is the gold standard of treatment, preferably with a behaviorally trained child therapist.  Meds as described above are also used to maximize clinical benefit.  On rare occasions, they may be effective enough when used alone.]

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Support

I would like to thank the following for their generous support, without whom this web site and training program would not exist: The Sidney R. Baer, Jr. Foundation, The Alden Trust, the Commonwealth of Massachusetts Department of Mental Health, Project INTERFACE (Newton Public Schools and the U.S. Department of Education), the Locke Educational Fund at Newton- Wellesley Hospital, Aetna Health Plan, the Kenneth B. Schwartz Center,  and the families of my medical practice. 

I hope you find this site useful and encourage any comments.


- Dr. Howard King, M.D.