What is IDD?

Intellectual Developmental Disorder (IDD), also known as Intellectual Disability. In the DSM-5-TR it is classified as a Neurodevelopmental Disorder. Straight from the DSM-5: IDD is a disorder with an onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains. The following three criteria must be met:

•   Deficits in intellectual functions, such as reasoning, problem solv-ing, planning, abstract thinking, judgment, academic learning, and learning from experience, confirmed by both clinical assessment and individualized, standardized intelligence testing.
•   Deficits in adaptive functioning that result in failure to meet developmental and sociocultural standards for personal independence and social responsibility. Without ongoing support, the adaptive deficits limit functioning in one or more activities of daily life, such as com-munication, social participation, and independent living, across multiple environments, such as home, school, work, and community.
•   Onset of intellectual and adaptive deficits during the developmental period.

IDD is also specified as either Mild, Moderate, Severe, and Profound. Most individuals with IDD (about 80-85%) have a diagnosis of Mild IDD.

Why am I talking about it?

IDD is really important to me because I am a child of a parent with IDD. My mother has IDD. For years only people close to me knew, I did not talk about it much with clients, unless they too had a family member or someone in their life who had IDD or another disability that also included IDD. I was totally out of the loop with anything disability. It was forbidden in my family to really talk about, and my family also had and still has so much internalized ableism that it has become very difficult to talk about. One day I was scrolling on tiktok and this woman talked about how her mother had a "developmental delay" and watching that gave me permission in some odd way to just start talking about it more freely. From there I snowballed into doing more research on disability and disability justice. I had to confront a lot of my own shame surrounding avoidance. I avoided looking into anything disability related for years, and that brought me a lot of shame. I stayed on the surface just like my family did.

I say all of this because it can be so lonely to be raised by a parent with IDD. Furthermore, I am an only child, so feeling alone at times was already the default. I know other individuals relate to such, but they might not have the space to talk about it. If you are reading this, maybe you too relate to the experience of being an adult child of a parent(s) with IDD. Not a lot of people talk about it and I understand why a lot of people do not talk about. Once you start talking about it, people get ugly. Not all people, but a lot. And then you have other people who are nice and will say something like "oh, that must have been hard" and have no idea what else to say so the conversation stops there. I get that. It can stir up an ethical dilemma for some, it's really hard for some people to grasp that people with disabilities do in fact have the freedom to choose if they want to have a child. Anyway, I say all of this because you are not alone in it if this resonates with you.

I came to realize the more I talked about it, the more of a gap I saw. Not a lot of clinicians specialize in working with families with IDD. A lot of clinicians will identify as working with neurodivergent individuals which IDD technically is, but IDD is not typically the diagnosis listed on their site. In my experience of taking my mom to doctors appointments I see the gaps all the time in how she is treated based on her masking and truly how she should be treated. This is not to fault the doctor, it's just that we don't have a system that supports individuals with disabilities all that well. Earlier this year my mom was given a cognitive test, she failed, not because of cognitive decline (though that could be on the horizon), but because of IDD. There was not a way to separate the overlap in this type of test, also this test does not try to isolate the person with IDD's baseline. People with IDD can struggle with all things on the test, not as a result of cognition but as a result of their skill set available. Things like this are hard to witness and it's quite hard to advocate for a type of test that doctors don't seem to have on hand like the NTG-EDSD.

I ultimately want to keep talking about this to raise awareness. I know lots of us are out there, though hard to find, we do exist. I just put a long form video on YouTube giving a quick explanation on IDD and answered 4 questions most people ask. You can watch it here