What is Dual Diagnosis?

Investigating the possibility

When families first consider the possibility of their child having a Dual Diagnosis, they can experience all kinds of feelings—doubt, confusion, skepticism, helplessness, and fear to name some.

It can feel very overwhelming, but it is normal to feel that way. Finding support is important, and the Utah Parent Center and Allies with Families can help. We will be talking more about some of the supports later in the workshop.

Actually receiving a diagnosis can be a long/involved process.

Intellectual or Developmental Disability (IDD) Mental Health Issues (MH) Dual Diagnosis

Let’s talk about a real life story of a child with Dual Diagnosis. This is the story of Alex.

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.

Could My Child Have Dual Diagnosis?

Learning more about what it means to have these conditions co-occurring can empower families.

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.

Intellectual and Developmental Disabilities (IDD)

The terms “Intellectual Disabilities” and “Developmental Disabilities” are often used interchangeably.

The terms “Intellectual Disabilities” and “Developmental Disabilities” are often used interchangeably.
Both are permanent, chronic conditions.

Onset before Age 18
Both occur before the age of 18, typically early in life or at birth.

Significant functional limitations in multiple areas

Both cause significant functional limitations in multiple areas (but not necessarily all areas) of life such as:

  • Conceptual reasoning
  • Social Skills
  • Capacity for independent living
  • Communication skills
  • Motor skills

An intellectual disability is characterized by significant limitations in BOTH intellectual functioning and adaptive behavior. A developmental disability may involve mental OR physical limitations OR both.

Mental Illness

Mental illness is defined as a serious disturbance in thoughts, feelings, and perceptions that is severe enough to affect day-to-day functioning.

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.


Experienced at the same time, Happening in connection

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.

Dual Diagnosis

Having two diagnoses
Intellectual or Developmental Disability (IDD)
Mental Health Disorder (MH)

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.

How Prevalent is Dual Diagnosis?

40-50% of people with IDD have a dual diagnosis, Studies vary with definition and methods

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.

“It has been reported that individuals with IDD who also have MI may constitute one of the largest underserved populations in the United States . . . Recent large scale research reflects that 40-50 % of people with IDD (also) have a psychiatric disorder.”

Fletcher & Behn, “Collaboration for People with MI/IDD: System Failures and Promising Practices” Behavioral Health News, Summer 2017, Vol. 4, No. 4. http://mhnews.org/

“Total U.S. Population 308,745,538 (U.S. Census Bureau, Census 2010)
Number of People In Total Population with IDD: 5,156,050 (1.67% – Schalock et al., 2010)
Number of People With IDD Who Have MI: 1,701,496 (33% of ID – Hobden & LeRoy, 2009)
Recent census indicates there are over 300 million people in the United States.
Research indicates that approximately 1.6% of the general population have IDD, which accounts for more than 5 million people.
NADD has embraced the prevalence rate of one third of the people with IDD having co-occuring MI disorder, resulting in an estimate of somewhat over a million and a half with a dual diagnosis in the U.S.”

Fletcher, Baker, St Croix, Cheplic, 2015 p. 58 “Mental Health Approaches to Intellectual/Developmental Disability: A Resource for Trainers”

Some Good News

Awareness of Dual Diagnosis is Increasing, Options for treatment are growing, Community supports are building

While it can be challenging to obtain a diagnosis and access appropriate treatment, options are growing for families.

As awareness of Dual Diagnosis increases, systems of healthcare and community supports are beginning to build to meet the needs of the DD population.

Does My Child Have a Dual Diagnosis?

As parents learn more about Dual Diagnosis and begin to seek treatment options, parents should understand that their children with IDD are at a significantly higher risk of having mental health issues than their peers.

That said, not every child who has IDD will also experience mental illness.

There are many diagnostic complexities that parents and physicians should consider before treatment and other possibilities that should be ruled out before caregivers proceed, particularly if the behaviors in question could be masking an underlying medical condition.

Understand the Disability

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.

Genotype — genetic makeup

Phenotype — physical expression of genes

Behavioral Phenotype — cognitive, personality, behavioral and psychiatric expression of genes

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.

What is 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

Rule Out Medical Concerns

When considering if an individual might have a mental illness, it is critical to consider the medical conditions an individual might have.

It is now believed that about 75% of behavior problems in those with an IDD have a connection to some type of physical illness. Medical Conditions are often under diagnosed

Medication effects/reactions

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

Medical condition/medication masking

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.

Some Medical Causes of Psychiatric/Behavior Issues

Let’s give a very broad overview of some of the medical causes of psychiatric or behavior issues.

It is beyond the scope of this training to discuss all of these possible causes in depth, but this does highlight the importance of having the needed medical information and the people on your team who are knowledgeable.

Nutritional deficiencies
Neurological disorders
Cardiovascular disorders

Gastro-intestinal disorders
Sensory disorders
Vision Problems

Any of these symptoms can produce anxiety, frustration or anger.  Many of the different types of heart diseases come with warning signs.  These warning signs many times are accompanied by pain. Symptoms could manifest in a number of behavioral ways for the person who is nonverbal  or has IDD.

Click here for information about ruling out medical concerns

Sleep problems are extremely common for people with IDD

Adolescents need 8.5 to 9.5 hours of sleep per night. Adults a little less. Lack for sleep causes us all to function poorly. Insomnia, Apnea

Sleep Disorders are often overlooked and neglected in people with IDD, but sleep problems are common, especially in those with severe underlying brain damage. Sleep deprivation can lead to an increase in other psychiatric symptoms and can compromise the immune system. A few things to watch for are severe behavior problems, snoring, daytime fatigue, difficult mornings and taking several psychotropic medicines. If other causes are ruled out, the person should be evaluated at a sleep clinic where monitors can track sleep patterns. (McGilvery Pg 53-54)

It is also important to remember that sleep problems are sometimes symptoms of mental illness.

What to Watch For

The Symptoms or behaviors are present in all the different settings or places where the person spends time. A change in behavior or symptoms, especially when abrupt and when it lasts more than a month. The symptoms persist despite consistent appropriate behavior intervention.

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).

Keeping Records

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.

Tracking Change

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

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.

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.

Common Symptoms

There are a lot of different kinds of symptoms that might lead us to consider if an individual could have a mental health challenge.

Remember, we are usually considering change—either something is new or it is more intense

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

Example: A child with FASD

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

Be Sure to Consider:

Diagnostic overshadowing

It is the failure to see a problem because the symptoms are attributed to another disability or condition.

Behavioral overshadowing

Behavioral overshadowing is the tendency to think a symptom is a learned behavior instead of a mental health symptom. Example:  Assuming the aggression, self-injury or sleep problems are caused by autism or that they are a learned behavior.

Medication Masking

Medication masking is when the medication relieves symptoms but does not correct the underlying disorder.

Episodic Presentation

If the individual’s symptoms come and go or are episodic, we need to take care that we keep data and also try to have the person assessed while the symptoms are occurring.

Divided Services (Silos)

We sometimes refer to all the different services being funded and operating separately as a system of “Silos”. There are real problems for agencies trying to work together to serve individuals with DD.

This is can be a problem when getting a diagnosis too.

Better collaboration can help make sure that all the significant issues in a person’s life are understood.

Environmental causes

Environmental causes are a big reason for behavior problems and can also affect mental health. Stressors in an individual’s environment can cause changes in behavior. When we see changes in behavior, we should always look at the environment.

People with IDD often need more structure and support, and if it changes or they don’t receive the support that is needed, behavior can worsen.

Even normal changes like changes in the family (a new baby, death of a family member), changes in employment, or changes at school can be destabilizing.

Things that might seem little can be more traumatic, like being teased, an over-stimulating environment, a change in schedule, or a change in staff. Individuals with ID are at higher risk for all kinds of abuse and neglect. If you have a young child at home you should be alert for signs of abuse.

Adults and children with IDD are more vulnerable too.

Abuse could include verbal or emotional abuse, physical abuse, sexual abuse, neglect, and for adults, financial abuse.

Effects of medications

“The sedative effects of certain medications (e.g., typical antipsychotic medications) can suppress, or mask, the presence of significant mental health symptoms. For example, a person may be experiencing agitation related to depression but, due to limited communication skills, be unable to describe symptoms of their depression. If the person is prescribed a typical antipsychotic medication, the agitation may stop. However, the medication has not effectively treated the person’s illness, and he or she may continue to suffer with symptoms of depression.”

(Mental Health Approaches to Intellectual/Developmental Disability: A Resource for Trainers, Robert J. Fletcher et. al., Pg 136, NADD Press 2015

Over-medication can also cause symptoms as can side effects of medications

We at the Utah Parent Center wish you the best as you work to help your family member with disabilities create the life he or she dreams of. Be sure to access our website at utahparentcenter.org to see our extensive resources and training related to transition from high school to adult life. If you have concerns or questions, please give us a call and speak with one of our knowledgeable parent consultants.

5296 S Commerce Dr., Suite 302, Salt Lake City, UT 84107
Phone: 801.272.1051
Toll-Free in Utah: 1.800.468.1160
Email: info@utahparentcenter.org

This Training is Provided by:
Allies with Families & Utah Parent Center

With Funding From:
The Transformation Transfer Initiative