What is an Intellectual Disability (ID)?
Intellectual disability (sometimes called cognitive disability, or previously mental retardation) is a term used to indicate that an individual demonstrates significant deficits in intellectual functioning (reasoning, learning, problem solving) and adaptive functioning (e.g., communication, self-help skills, social skills). Children with intellectual disabilities generally take longer to develop than average peers their age. They often take longer to speak, walk, potty train, and take care of other personal needs like dressing and feeding themselves. In more severe cases, individuals with intellectual disabilities may continue to work on attaining these skills throughout their lifetime. Children with intellectual disabilities also have trouble learning in school or learn more slowly than their peers.
The diagnostic criteria for intellectual disability, set forth by The American Psychiatric Association’s (APA) which can be found in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5, APA 2013) is as follows:
Intellectual Disability is a disorder with onset during the developmental period (before age 18) that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains. The following three criteria must be met.
A. Deficits in intellectual functions such as reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience, confirmed by both clinical assessment and individualized, standardized intelligence testing (an individual must score below 70 on an IQ test ).
B. Deficits in adaptive functioning that result in failure to meet developmental and socio-cultural 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 communication, social participation, and independent living, across multiple environments, such as home, school work, and community (standardized questionnaires are often given to caregivers/parents/teacher to determine the level of adaptive functioning).
C. Onset of intellectual and adaptive deficits during the developmental period (onset must be before the age of 18).
What Causes Intellectual Disabilities?
Researchers/doctors have identified many causes of intellectual disabilities. The most common causes include genetic and chromosomal disorders, infections during pregnancy, drug or alcohol use during pregnancy, problems during birth or delivery, or premature birth. In many cases the cause of an intellectual disability is unknown.
Although an intellectual disability is a life long condition, most children with ID can learn to do several things for themselves. It just takes time and effort.
How Many People in the U.S. Are Diagnosed with Intellectual Disabilities?
The Arc of the US (the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities) and the American Association of Intellectual and Developmental Disabilities (AAIDD), indicate that 1.5 to 2.5 percent of the general population has an intellectual disability. That is roughly 6 million people in the US.
Signs of Intellectual Disability
Children with intellectual disabilities can show several signs. These include:
- late development of gross motor skills (sitting up, walking, or crawling)
- late speech development or trouble with communication
- late development of self-help skills such as feeding oneself, using the potty, putting on own clothes
- trouble remembering things
- trouble learning about the concept of money or paying for things
- trouble learning or understanding social rules
- difficulty connecting consequences to actions
- difficulty solving problems
- difficulty with logical thinking
To check if your child is meeting his/her developmental milestones, you can view the checklists below with milestone timelines set forth by the Centers for Disease Control and Prevention. You can print out the checklists to take your child’s doctor as well.
Side-Note: If you have any concerns about your child’s development, please mention them to your child’s doctor. He should be able to refer you to professionals that can provide assistance. The earlier intervention starts, the better. Don’t wait in the hopes that things will improve on their own. Also keep in mind that it is never too late to start getting help. If you feel like you have waited too long, don’t let that stop you from getting help. Act now!
Who Diagnoses Intellectual Disabilities and How Are They Diagnosed?
If you are considering having your child evaluated for an intellectual disability, you can request that the school psychologist from your child’s school complete the evaluation at no cost to you. If your child goes to private school, find out if they have a psychologist. If they do not, your child’s district may send one of their public school psychologists to your child’s private school to complete the evaluation. Call the district and find out. You can also request an evaluation for ID from a licensed private psychologist such as a child psychologist or a clinical psychologist. You would utilize your child’s insurance or pay out of pocket.
An evaluation from a private psychologist is not the same as an evaluation by a school psychologist. Private psychologists give diagnoses while school psychologists give educational classifications. An educational classification of an intellectual disability entitles your child to special education services and an Individual Education Program (IEP) in which they will receive accommodations and work towards individualized goals implemented by a special education teacher and possibly other support personnel such as a speech/language therapist and occupational therapist.
The level of support will depend upon the individual needs of the child. Some children remain in the regular education classroom with minimal support from a special education teacher, while others spend the majority of the day with a special education teacher in a special education classroom with other students who also have Intellectual Disabilities. Special Education classrooms have fewer students that general education classrooms allowing for more individualized/intensive support.
You are part of your child’s IEP team and have the right to reject special education or classroom placement suggestions made by the school team. If you are uncomfortable with the suggestion for your child’s placement ask questions and try to work with the team to meet your child’s needs as best as possible.
If your child is not yet school age, he/she can receive a free evaluation from your state’s early intervention department. The early intervention department generally evaluates your child for developmental delays rather than an intellectual disability. If your child shows to have significant delays, the early intervention department will provide him with services in his areas of need such as fine motor skills (hold small objects, pick up small objects, fasten buttons, etc.), gross motor skills (sitting without support, walking, etc.), speech and communication skills, social/emotional, cognitive skills (e.g., identifying objects, colors, shapes, attend to adult directives), and adaptive skills (self-care skills).
If your child is under age 3, services will be provided in your home. Children age three and up will receive support in an early intervention preschool setting (transportation is generally provided). If you are interested in an early intervention evaluation, do a Google Search for early intervention in your area.
If your child is not yet school age and you want him evaluated specifically for an intellectual disability, taking him.her to a private psychologist would be the best option.
Psychologists look at three things when diagnosing an intellectual disability:
1 – Does the child have an IQ below 70? This is assessed through a standardized IQ test which is an assessment of intellectual capability (the ability to think, solve problems, and make sense of the world). Keep in mind that young children (e.g., preschool age) may not perform to the best of their ability on an IQ test. Attention, concentration, shyness, or anxiety could interfere with their performance. Additionally, young children can make gains in development that may not have occur until after the initial IQ test.
2 – Does the child have the necessary skills to be as independent as average individuals his/her age? This is known as adaptive functioning and is often assessed through interviews and rating scales given to parents, caregivers, and/or teachers. Skills measured include:
- Functional Academics
- Social Skills
- Home/School Living
- Community Use
- Health and Safety
3 – Did the onset of deficits in intellectual and adaptive functioning begin before age 18.
Intellectual Disabilities fall into the following ranges:
The range is determined by the severity of deficit in intellectual and adaptive functioning. 85 percent of people with intellectual disabilities fall in the mild range. The more severe the disability, the more support the person will need in the areas of communication, self-help skills, learning, etc.
In some cases, children are thought to have an intellectual disability at birth, before ever having a formal evaluation. Examples include children with genetic conditions like fragile X syndrome, Down Syndrome, or Prader-Willi syndrome. Children with genetic conditions also benefit from a formal evaluation to help parents, caregivers, and educators determine the severity of the disability and plan appropriately to meet their needs.
Once your child receives a diagnosis or educational classification of Intellectual Disability it is highly recommended that you contact your state’s Intellectual Disability Services Department (which you can also find through a Google Search) to find out what community resources are available for your family and your child. Examples of services include monetary assistance, respite care (which provides parents a break by having respite caregivers spend time with your child-this can be for a few hours or overnight), behavior support in your home, and a service coordinator to assist you and your child with finding additional resources.
Help Your Child/Student Develop Their Adaptive skills
Encourage independence as much as possible in the areas of communication, self-help skills, health and safety, chores, social skills (e.g., manners, taking turns, cooperating in a group), academic skills, and skills needed for the workplace (as they get older). Don’t do things for your child/student that they can do themselves.
Work with your state’s Intellectual Disability Services Department to determine services that will be available to your child once he reaches adulthood. Your child’s IEP team will discuss plans for moving into the world of adulthood as well. This is known as transition planning. The Individual with Disabilities Education Act (IDEA) requires that transition planning starts no later than the first IEP in effect when your child turns 16. Sometimes transition planning starts even earlier. You are part of your child’s IEP team. If you want to discuss transition planning before age 16, make it known to your child’s school and discuss it at the yearly IEP meeting.
Tips for Parents
- Learn as much as you can about ID. When you are informed you are better able to help yourself and your child.
- Be patient with your child and have optimism that your child will learn and grow. He/she has a whole lifetime to develop to his full potential.
- Encourage independence whenever possible. Praise your child for his/her effort.
- Give your child responsibilities such as chores. Keep his/her age, attention span, and capabilities in mind. You may need to break down tasks, giving directions one step at a time. Many children with intellectual disabilities do better when provided with a model or demonstration (e.g., show them how to do the chore rather than just telling them). Provide assistance whenever needed, demonstrate as much as necessary. Provide opportunities for repetition and practice and give feedback on progress.
- Focus on your child’s strengths and build up his.her abilities.
- Find out what your child is working on in school and reinforce those concepts at home.
- Find support in the community for your child such as social groups, dances, sports (e.g., Special Olympics). This will help build confidence. You can find a lot of this info through Google Searches or by contacting your local intellectual disabilities office. The psychologist who evaluated your child should also be able to provide you with community resources.
- If you are struggling with your own emotions surrounding your child’s disability or are looking for other parents to talk to who have children with special needs, try a parent support group . Do a Google Search for support groups for parents of children with special needs to find the closest group to you.
- Keep in contact with your child’s school. Share information with your child’s teachers about his/her progress and your concerns. Attend your child’s IEP meetings and ask questions to find out how he is progressing towards his IEP goals.
Tips for Teachers
- Learn as much as you can about intellectual disabilities so you can support students in the most effective ways possible
- Learn about your students’ strengths and interests, build on them, and incorporate them into your lessons
- Praise your students for effort and provide feedback on their progress
- Be as concrete as possible. You may need to break tasks/instructions down into smaller steps or chunk assignments into smaller increments, checking progress along the way
- Provide demonstrations and use visual aids (pictures/gestures) rather than only providing verbal instructions
- Involve your students in clubs or other social activities if possible
- Teach and demonstrate adaptive skills such as social skills and self-help skills (e.g. cleaning up after oneself, having a job in the classroom, putting on own coat, packing up one’s belongings)
- If you are not part of the IEP team, make sure you have a copy of the IEP and are familiar with your students’ goals
- Ask questions and seek support from other professionals in your building (special education teacher, administrator, guidance counselor) if you have questions about implementing IEP goals, modifying curriculum, teaching adaptive skills, etc.
- Keep an open relationship with your students’ parents. Let them know you are there to answer questions and support their child..
- Be kind and supportive to all your students, giving the overall impression that you are there to help them become as knowledgeable and independent as possible
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Rachel Wise is a certified school psychologist and licensed behavior specialist with a Master’s Degree in Education. She is also the head author and CEO at educationandbehavior.com, a site for parents, educators, and counselors to find effective, research-based strategies that work for children. Rachel has been working with individuals with academic and behavioral needs for over 20 years and has a passion for making a positive difference in the lives of children and the adults who support them.