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Compassionate, personalized approach can help providers avoid common treatment pitfalls
Intellectual and developmental disabilities (IDDs), including autism spectrum disorder, can lead to a range of neurological impairments, from mild to severe. These conditions, which persist from childhood through adulthood, frequently coexist with mental health problems that can significantly affect a patient’s diagnosis, therapeutic options and quality of life.
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“Patients with IDDs are three to four times more likely to have a comorbid psychiatric illness; in fact, we speculate that this risk may be even higher,” explains Cleveland Clinic psychiatrist Rachael Ferrari, MD.
“Unfortunately, many mental health disorders are missed in this population due to diagnostic overshadowing, the erroneous assumption that a challenging behavior or mood-related symptom is simply a comorbidity of the intellectual disability rather than an underlying mental illness," she says. "Although it's a mistake to assume that an unfavorable behavior is just part of who the patient is, providers can avoid that risk by taking a closer look at the unique individual.”
In the latest episode of Cleveland Clinic’s Neuro Pathways podcast, Dr. Ferrari shares practical insights for diagnosing and managing IDDs. She discusses:
Click the podcast player above to listen to the 20-minute episode now, or read on for a short, edited excerpt. Check out more Neuro Pathways episodes at clevelandclinic.org/neuropodcast or wherever you get your podcasts.
This activity has been approved for AMA PRA Category 1 Credit™ and ANCC contact hours. After listening to the podcast, you can claim your credit here.
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Podcast host Glen Stevens, DO, PhD: When you’re talking about intellectual disabilities, you’re referring to patients who have problems with learning, reasoning, problem solving, adaptive behaviors and those types of things, [in addition to] potential delays in intellectual and physical development. You must see a wide range of patients, including those with autism, behavioral disorders, brain injuries, Down syndrome and fetal alcohol syndrome. Is that correct?
Dr. Ferrari: Yes, that's an excellent explanation. As an adult provider, I generally see patients who are 18 years and above. But technically, to qualify as an intellectual or developmental disability, the disorder must have started in childhood. There are a wide variety of genetic conditions, including potential exposures in utero, that can lead to…various levels of intellectual disability, from very mild to severe. [I see] many patients who are able to verbally express how they feel…as well as those who are completely nonverbal and must use gestures or rely on caregivers to help them communicate.
Dr. Stevens: Let’s say I'm a primary care physician and I'm seeing a patient who has never been diagnosed with an IDD, but I think that they might have one. What do I do?
Dr. Ferrari: That's a great question. We've noticed an increase in referrals for adult autism, in particular – patients whose diagnosis was missed in childhood. A large reason for this is because when the Diagnostic and Statistical Manual of Mental Disorders initially described the symptoms of autism, the research was based on a young male population. Unfortunately, there are many adults out there with autism who were overlooked because they didn't have the stereotypical symptoms that were presented in the earlier versions of the manual.
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As a primary care provider, one of the easiest ways to evaluate patients for autism spectrum disorder is the AQ-10, a quick 10-item questionnaire. A score of six or more is indicative of possible autism. The sensitivity is about 79%, and the specificity is about 87%, so it's a good screening tool. It is appropriate to refer any patient who tests positive to a psychiatrist, a psychologist or an autism center for further assessment.
[When evaluating someone] with a possible intellectual disability, it's important to get a sense of what the patient is looking for. If they're an individual who needs more resources, they may [benefit from] a connection to a day program or other support services, so it’s really, really imperative that they receive a correct diagnosis.
Or maybe the patient is a student who wants to further their education, but they have a mild intellectual disability and need to qualify for disability services at their school. Those patients could be referred to neuropsychology or psychiatry, [where they can be] assessed and receive a formal diagnosis.
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