Alex’s Dual Diagnosis Story

When he was born, Alex was a chubby, happy baby whose parents soon learned that he had been diagnosed with hydrocephalus and cerebral palsy.
As he grew, it gradually became apparent that Alex would have profound intellectual and developmental challenges. He had difficulty walking and talking. He wasn’t learning as quickly as other children his age. And he often struggled with intense emotions, including anger and fear.

When he was eight years old, Alex’s pediatrician suggested that he might also be suffering from severe anxiety. His parents were shocked and confused when the doctor advised that they seek therapy and possibly medication. Did children like Alex even have mental health issues, they asked. Weren’t his meltdowns simply a part of his other conditions? And if he were diagnosed, could a child like Alex with such limited communication skills even be treated for anxiety?

After learning more about his potential diagnosis, Alex’s parents began to recognize that he was, in fact, showing some behaviors
that were very similar to those of typically-developing children who had also been diagnosed with anxiety, including feelings of panic, heavy sweating, and insomnia.

They realized that his symptoms could involve more than his developmental disabilities. Their doctor introduced them to some coping strategies that helped with Alex’s negative behaviors, and with the help of therapists, they found a medication regimen that also made a big difference.

This workshop will help families to understand the complexities of Dual Diagnosis and will address some of the questions you may have.

Alex is part of a large population of special needs children who have co-occurring intellectual or developmental disabilities (IDD) and Mental health issues (MH). An official definition is “children youth and adults with lifelong developmental disabilities who experience mental health needs.” This can also be called a concurrent disorder or “co-morbidity.”

When families first learn about the possibility of their child having a Dual Diagnosis, they can experience many different feelings.
Most parents experience feelings of guilt and stigma to some degree, and they are often relieved to even hear it mentioned—they are not alone in these feelings.

Often we find that people with IDD have mental health needs when they exhibit “challenging behavior”. This term has been used to describe aggression, self-injury, and destructive, disruptive or non-compliant behaviors that can be an expression of symptoms of physical or mental health needs. Such behaviors are difficult to deal with and may expose the individual to threats, excessive force, and caregiver anger. As a result the individual may experience even further isolation as others struggle to respond.

Sometimes a mental health challenge comes up for the same kinds of reasons it does for any of us.  It is not necessarily connected to the disability. Sometimes it is helpful to know if the mental health concern is connected to the disability.  It may be harder to change, or the treatment plan may be different. Whatever the reason for the Co-occurrence, we still need an appropriate treatment plan.

Both need to be carefully assessed and diagnosed, other diagnoses can also be present

It is becoming accepted to use the term “Dual Diagnosis” to refer to individuals who have co-occurring IDD and MH diagnoses

Dual Diagnosis also commonly refers to having both MH and Substance abuse, and many professionals may be more familiar with that usage. In this workshop the term means IDD plus MH.

There are various proposed explanations of why mental illness might be more prevalent in individuals with IDD.
No one knows for sure why some individuals develop mental illness and others don’t. There are many theories. Widely accepted factors are:

Day to day life is very challenging for individuals with IDD leading to the experience of stress. Individuals with IDD have a limited capacity to cope, so smaller stressors may be experienced more intensely. Physical damage to the brain, digestive system, etc.

One thing that can be confusing is that certain behaviors are characteristic of certain disabilities. Sorting out which behaviors are a result of or characteristic of the disability and which may have other causes can be tricky.

Sometimes behavior that is expected can intensify because of a mental health challenge. This can become a barrier for both parents and physicians. They may say “It’s just a part of the disability” when, in fact, it has
become worse because of a mental health condition.

A person’s genotype is the genetic makeup. The phenotype is the physical expression of the genes. Certain disabilities can be identified by physical characteristics. For example, a common genetic disability is Down Syndrome.

The behavioral phenotype refers to the cognitive, personality, behavioral and psychiatric characteristics associated with a certain genotype. If behavior is associated with a phenotype, the treatment plan might be different than if there is also a mental illness.

Mental Health – A balance of mental, emotional, physical, and spiritual health

Mental Illness – A serious disturbance in thoughts, feelings, and perceptions severe enough to affect day-to-day functioning

A person with IDD can have the same mental health disorders that are found in the general population.
Types of disorders and symptoms:Depression, bipolar, anxiety, trauma, impulse control, attachment, schizophrenia

Polypharmacy – “The rate of polypharmacy with this population is significant. These individuals are often on multiple medications, some of which are treating the same thing. Some of the side effects of the medication can produce symptoms that are similar to a psychiatric disorder. For example, fatigue, confusion, agitation, lethargy, short attention span, or changes in sleep or appetite are common medication side effects. They are also symptoms of mental health disorders.”

(Intellectual Disability and Mental Health: A Training Manual in Dual Diagnosis, Sharon McGilvery et. Al., Pg 10, NADD Press 2011)

Toxicity-Toxicity can suddenly develop after a person has been on a medication for an extended period of time

When individuals have difficulty communicating discomfort, it is important to find alternate ways to communicate. It may be helpful to take some time to talk about this now or another good time would be during the second section when discussing assessment.

Masking is the concealing of one disorder by a second condition delaying diagnosis and treatment.

An example is going on a diet and thinking you are losing weight from the diet when you also have a medical condition that causes weight loss. Medication masking is when a medication relieves or removes symptoms without treating the underlying problem.

What are some relevant examples of medical causes of problem behaviors that get missed?
What are some medications you know of that have behavioral side effects?

Example: A girl with autism who was screaming and having tantrums. Upon being admitted to the psychiatric unit she received an examination including a dental exam. She had a back molar that was infected. When the dental problem was addressed, the tantrums and screaming stopped.

The child’s behavior happens both at school and at home. This helps rule out that the behavior is caused by something in one environment. However, keep in mind that the hormone changes of puberty can cause sudden changes that last.

Cyclical symptoms. The symptoms come and go or are episodic

Example: With bipolar the symptoms cycle. However bipolar may look different in a person with IDD, because the individual does not have all the opportunities for acting manic that a person in the general population has such as spending money. The individual may act grandiose on a smaller scale. Cycles can vary from short (days) to long (weeks or months).

None of use can remember every detail with all we have going on. Write it down.

It is important to keep good records on all medical issues so that these can be shared during the evaluation. This will come up again when we talk about getting a diagnosis.

It is also a good idea to keep track of behavior or other important events.

Because change is such a big thing that we watch for, it is really helpful to have documentation of changes. The more concrete information we can give to clinicians, the better.

Baseline data is the data collected before something occurred or changed or at the start of the data collection.

If something catches us by surprise and we don’t have data, we want to look at the history of the individual’s past behavior as best we can.

Parents can find easy ways to keep valuable data too. Sometimes something changes before we get baseline data. Even then, we can start collecting data so we track the behavior to see if it persists, how often it happens, when and where it happens etc. You can make a simple chart appropriate for what you are tracking.

Daily data sheet
Parents can use a chart to collect data to help them understand exactly how often and when a behavior is occurring.
The behavior we are tracking is called the target behavior. The target behavior could be a behavior we want to decrease, or a behavior we want to increase, or even a behavior we want to understand better.

Graphing
Data can be charted to collect data to help them understand exactly how often and when a behavior is occurring. Data from families can be very helpful during the diagnosis process. After treatment begins data can help us know if an intervention is working.

Consciousness or Attention – Change in memory or understanding, Memory loss.
Emotion or mood is also called “affect”
Motor activity, movement, or physical changes
Changes in appetite And changes in sleep
Thinking or verbal Expression including: Talk about hurting self, Not making sense

He or she has good verbal skills compared to his intellectual level. It was common for him to talk about and engage in all these thinking and verbal expression differences that were not necessarily distressing but showed that he had a mental health disorder.

Talking to imaginary people
Hearing people think
Talking to people from outer space
Talking to animals
Getting messages from animals