Intellectual disability is a condition that starts in childhood and can affect a person’s problem-solving skills and their ability to carry out daily tasks.
Intellectual disability, or intellectual developmental disorder, is a condition that begins during childhood but can affect a person throughout their lives.
This condition can affect a person’s intellectual capacity as well as their daily living skills.
But people with intellectual disabilities can learn important skills and live fulfilling lives. If you’re the parent of someone with an intellectual disability, you’re not alone.
There are ways you can support your child and it starts with learning more about this condition.
Before the newest edition of the Diagnostic and Statistical Manual (DSM-V-TR), this condition was called an intellectual disability (ID). It’s now officially referred to as intellectual developmental disorder and is considered one of many types of childhood developmental disorders.
Intellectual developmental disorder (IDD) is often diagnosed when someone has intellectual limitations (as shown by a low IQ) as well as delays in three main areas: Conceptual skills, social skills, and practical skills.
People with IDD have trouble with things such as:
- problem solving
- daily skills, such as going to the grocery store
- social skills, such as communication
Kaely Shilakes, PsyD, a licensed psychologist who has dedicated her career to working with people with IDD, says, “One of the primary factors that differentiate IDD from a mental or emotional disability is that to meet the criteria for IDD, onset needs to be before the age of 18. It’s a developmental disorder, so it starts during the developmental period — in other words, in childhood.”
The only way to know for sure whether your child has IDD is to get them tested. But many parents start to notice signs at home that their child may have an intellectual delay and be facing some intellectual challenges.
Some signs of IDD include:
- not meeting developmental milestones such as sitting, crawling, or walking
- having trouble with developmentally appropriate social skills
- delayed speech
- a lack of interest or interaction with the world around them
- challenges with problem solving
- difficulty understanding the consequences of their actions
- learning difficulties
IDD can be diagnosed shortly after a child is born in some cases. But some parents may not notice their child has IDD until later in life, especially if the IDD is mild.
IDD can be caused by a variety of different factors, including biomedical and environmental. According to the
- chromosomal conditions such as Down syndrome
- genetic mutations such as Rett syndrome
- exposure to certain substances in-utero (for example, fetal alcohol syndrome)
- infections during pregnancy
- premature birth
- traumatic brain injury (one of the only ways a person can acquire IDD in adulthood)
Not all of these conditions will lead to IDD. For example, a child with fetal alcohol syndrome may not develop IDD.
These scores are combined with adaptive functioning measures, which are questionnaires or observations to test what a child’s daily functioning skills are like.
“We measure how they’re functioning in areas such as self-care, daily living skills, communication skills, and adaptive skills out in the community,” Shilakes says.
The results of these measures can help determine whether a diagnosis of IDD is appropriate.
Diagnosis will also show the severity of the IDD. There are four severities for IDD:
According to the American Psychiatric Association (APA), an estimated 85% of people have mild IDD.
If your child has IDD, school may be a challenging experience. They may have trouble understanding and following instructions, communicating clearly, or following social rules.
Some children with mild IDD can acquire social skills and master basic academics. But they may be slower than average children their age in some areas.
There may be social education services offered through your child’s school that may be helpful.
Additionally, children with IDD may qualify for accommodations under an Individualized Education Plan (IEP). This specialized plan is created for students with disabilities that guarantee accommodations in the classroom.
If you want to know more information about the services offered in your community, consider speaking with your child’s school.
There’s currently no cure for IDD, which means that people who have it will live with it forever. But there are treatments available to help improve functioning, teach important life skills, and limit the extent to which IDD affects a person’s daily life.
Shilakes says, “The goal of treatment depends on the severity of the IDD. When it’s possible, the goal is to come up with an individualized service plan that will help the person with IDD live a satisfying and fulfilling life and be a contributing member of society. Ultimately, we want to try to eliminate barriers to living the life they want to live.”
This can be done by helping the person learn adaptive or daily living skills to work toward more independence.
There are many types of services that can help people with IDD and their families accomplish this. These include:
- testing and diagnosis for children
- special education and academic support
- employment services and vocational support
- housing services
- behavioral or psychological therapy
- speech and language pathology services
- social groups
- case managers that help coordinate services and care
- assisted technology
Depending on where you live, many of these services may be available through a local government or nonprofit organization. With the support of these services as well as their family members, most people with IDD can live productive and fulfilling lives.
If you’re an older adult who cares for an adult child with an intellectual disability, consider taking steps to plan for their future. This can be especially helpful if they still live at home.
If you’re a parent and you suspect your child may have IDD, consider taking them to see a healthcare or mental health professional that specializes in this condition as soon as you notice signs or symptoms.
With early intervention, your child can have a better chance of being successful in school and throughout life. You can work together with the specialist to help your child learn new skills and be more independent.
Shilakes also recommends that parents and family members find a community of other families who are impacted by IDD. You’re not alone. There are others who are facing the same challenges and can offer support.
Depending on where you live, there may be local support groups and communities that bring people with IDD and their families together. Online communities are another option.
Try to be patient and kind with your child and with yourself. There’s support available for you.
If you’re unsure where to start, you can check out Psych Central’s hub on finding mental health support. A healthcare or mental health professional may also be able to help you find resources and support.
Other resources that might be helpful include:
Intellectual developmental disorder, formerly called intellectual disability, is a condition that typically starts in childhood and affects people throughout their lives.
Although there’s currently no cure for IDD, there are ways to manage symptoms and teach skills to help people living with this condition become more independent. Most people with IDD can live fulfilling and satisfying lives.
If you’re a parent of a child with IDD, try to get them connected with services, such as testing and diagnosis, as soon as possible.
Remember, you’re not alone. There are communities and services out there that can help support you and your child.