We’ve come a long way in talking about mental health in this country. According to statistics compiled by the National Alliance on Mental Illness (NAMI) 43.3% of adults with mental illness and 64.1% of adults with serious mental illness received treatment last year. Despite efforts to destigmatize seeking help, the suicide rate in the United States has jumped 31% since 2001.
When it comes to people with intellectual disabilities (ID), however, we are still in the dark ages. In fact, new research from the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and Human Services Research Institute (HSRI) finds that the understanding that people with ID can be dually diagnosed with mental illness is very recent.
Researchers analyzed 2017-2018 data from National Core Indicators (NCI). NCI is a voluntary effort by public developmental disabilities agencies to measure and track their own performance. Core indicators are standard measures used across the U.S. to assess outcomes of services provided to individuals and families. They focus on key areas of concern for us, such as employment, rights, inclusion, and health.
NCI explored characteristics and outcomes of people with intellectual disabilities with a dual diagnosis of mental illness. The 2017-18 survey was conducted in 35 states and Washington D.C. NCI analyzed individuals who had ID and at least one of the following: mood disorder, anxiety disorder, psychotic disorder, and other mental health diagnosis.
The average age of those responding with a dual diagnosis was 44. Respondents age 40 and older were significantly more likely to have a dual diagnosis than those younger. More than have of the respondents were male. 82 percent of those with a dual diagnosis were on medication for mood, anxiety, and/or psychosis.
The researchers concluded that people with co-occurring intellectual or developmental disabilities have unique needs that require complex supports, even more so than their peers without a dual diagnosis. They also stressed further exploration of diagnoses to ensure mental health conditions are not dismissed as behavioral challenges. The report stated, “Such nuanced distinction between medications to treat a mental health condition and those for behavioral purposes is difficult for skilled clinicians; for direct support professionals without a clinical background, the distinction may be lost completely. It is not unusual, for example, for primary care physicians to prescribe psychoactive medications to assist with insomnia or sleepwalking, which may actually be an unrecognized symptom of bipolar disorder. This area of practice requires significant effort among the state, private provider, service coordinators and health providers with both systems.”
Researchers also noted that prior to the 1980s and 1990s it was assumed that people with intellectual disabilities could not have mental illness. Behavioral challenges were seen as a consequence of cognitive limitations.
What I have noticed as a parent and advocate is while there is a better understanding of mental health issues, the default for many medical professionals is to blame the intellectual disability rather than exploring what is causing the behaviors.
This sort of thinking is still rampant today. Parents seeking treatment for their children with intellectual and developmental disabilities often see their concerns written off as a product of the original diagnosis. Or worse, that treating other issues are not necessary because the doctors imply it won’t make a difference.
One example is the roller coaster I have experienced with my own child who has Down syndrome. We danced with a potential diagnosis of permanent, sensorineural hearing loss for the first 8 years of his life. One audiologist declared it’s OK if my son has hearing loss in one ear, because he can hear out of the other. Hearing tests are recommended annually for individuals with Down syndrome. But it took multiple audiologists and half a dozen doctors to get a conclusive diagnosis and even then, one ENT/audiologist team said hearing aids weren’t necessary. (They are, as the 2ndand 3rdopinions I sought out revealed).
What does this have to do with mental health? Everything. Doctors often do not take individuals with ID/DD or their parents seriously when they come in with legitimate concerns. Some doctors don’t see these patients as worthy of treatment because they know very little about the person’s condition.
After getting my son hearing aids, his school team described his shift in class as an “awakening.” He could finally hear things clearly, and he immediately began engaging more. When difficult behavior persisted, despite visual schedules, interventions, and positive behavioral supports my husband and I decided it was time for another neuropsychological evaluation.
The psychiatrist we saw specializes in autism and Down syndrome. She said my son’s symptoms are in line with Attention-Deficit/Hyperactivity Disorder (ADHD). According to this doctor, the reason none of these interventions worked is because the ADHD prevents the brain from being able to access visual schedules and other strategies. Medication is the most effective way to treat ADHD. When I asked her why previous specialists missed this and blamed the behavior and cognitive deficits on his intellectual disability, the new doctor explained that not enough is known. When developing the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the American Psychiatric Association’s (APA) baseline for mental disorders are neuro-typical subjects. She said there are some cases where they use subjects with autism. But in general, there are no guidelines for diagnosing mental health issues in individuals with ID/DD.
Simply put: we fall through the cracks.
HOW TO ADVOCATE
Line up specialists early.When parents realize their child needs mental health help, finding a specialist who understands the nuances of ID/DD and mental health issues is incredibly difficult. We often must drive out of state. We can spend years on a waiting list just for an initial consultation. One parent I know had to wait 3 years to see a specialist to help her adult son with Down syndrome who was experiencing a mental health crisis.
This is why it’s critical to stay current with a team of specialists, even if some of those visits don’t feel necessary. Making the effort now could prevent hardship later.
Talk to other parents. As difficult as an ADHD diagnosis was to digest, it was the right thing. When I started mentioning it to my friends and acquaintances who also have children with Down syndrome, a shocking amount of them were in the same boat. They also shared that the ADHD medication makes a dramatic difference.
Sometimes parents are way ahead of the medical community in recognizing trends. While ADHD and Down syndrome is not listed as a common co-morbidity, I would guess it will be added to the long list of issues to screen for in the future.
Get 2nd, 3rd, 4thopinions. We are our child’s strongest advocate. We know when something isn’t right. If a doctor doesn’t take your concerns seriously, see another, and another, and another until you find one willing to listen and work with you.
Pay attention to medications and their side effects. One parent/advocate pointed out that while some medications can be helpful, the flip side is that there are people who are overmedicated. Long term use of some medications are untested, and can cause side effects that can lead to other mental health conditions. One of our specialists here at the Center for Family Involvement has talked with families who have utilized anxiety or ADHD meds and when side effects kicked in, they were prescribed antipsychotic meds. We must monitor closely to ensure things don’t spiral out of control.
Stay vigilant. This journey is a marathon, not a sprint. Stay strong. Take notes. Follow up with emails and phone calls. Get on the patient portal and communicate with the doctor. If you feel you’re being rushed during an appointment say so and ask if there is a way to continue the discussion. Be honest when you don’t comprehend something. The doctor might call you later or put you in touch with a nurse. It is important you understand every aspect of care. You also must remember you’ll be the point person when communicating medical conditions and medications to other doctors, the school team, other caregivers, etc.
Self-care. Dual diagnoses can knock the wind of you. Self-care is always important, but especially now. Make sure you’re getting enough sleep. Eat right. Make time to sort through all of your notes and create a medical file.
Take time to enjoy your loved ones. We get so caught up in treatment and managing care. We have to force ourselves slow down, care for ourselves, and make time for fun.
Questions about medical challenges facing you or your family? Call our helpline: 877.567.1122