What are signs of Intellectual Disability?

Parents or caregivers who have a child with ID often notice early differences in their child’s development:

• Delayed milestones: Children with ID often exhibit delays in reaching key developmental milestones, such as sitting up, crawling, walking, talking, or toilet training.

• Cognitive challenges: Children with ID may struggle with learning and problem-solving. They may have trouble understanding concepts, recognizing shapes or colors, or counting.

• Social and emotional delays: Children with ID may have difficulty with social interactions and emotional regulation. They might struggle with making friends, understanding social cues, or controlling their emotions.

• Memory and attention issues: Problems with memory and attention can be early signs of ID. Children may forget instructions quickly, have difficulty focusing on tasks, or exhibit short attention spans.

• Limited independence: Children with ID often require more support with daily living activities, such as dressing, feeding, and personal hygiene, than their peers of the same age.

It's important to note that children develop at their own pace, and occasional delays in one area of development do not necessarily indicate ID. It is essential to consult with a professional if you have concerns about your child’s development. If you suspect that your child may have ID or are concerned about his/her development, it's essential to consult with professional for a thorough evaluation and guidance on appropriate interventions and support.

When should I seek assessment?

If your child is struggling in his/her educational setting (i.e., not progressing at the expected rate academically or socially), seeking an evaluation can help identify underlying developmental issues. If you, your child’s pediatrician, or others involved in your child’s care (e.g., therapists) have concerns about your child’s development, it is important not to ignore these concerns. Remember, the earlier your child receives a diagnosis, the sooner interventions and services can begin.

Why should I seek assessment?

There are many reasons why assessing an individual for ID is critical:

• Early intervention: Early diagnosis and assessment of ID can open doorways to early intervention. Diagnosing ID as soon as possible can increase the supports available to your child.

• Individualized treatment and support: Assessment helps pinpoint the specific areas where a child is experiencing difficulties. With this information, professionals can create a customized support plan that targets the child's unique needs, focusing on the areas that require the most attention.

• Access to services: A formal diagnosis of ID is often required to access specialized services and support, such as intervention programs, speech therapy, occupational therapy, and educational services tailored to the child's needs.

• Parental guidance and education: With a formal assessment, parents can better advocate for their child's needs within educational and healthcare systems. It also enables them to access educational resources and connect with support groups and organizations dedicated to ID.

• Understanding and acceptance: An ID diagnosis can help parents, caregivers, and educators better understand the child's behavior and needs. This understanding fosters empathy and acceptance, which are vital for creating a supportive and inclusive environment.

• Parental guidance and education: Parents and caregivers of children with ID can benefit from guidance and resources tailored to their child's diagnosis. Knowing that a child has ID can empower parents to seek out information, support groups, and training to help them navigate the challenges they may face.

• Long-term planning: An early diagnosis allows families to plan for the future, considering the educational, social, and healthcare needs of their child as they grow into adolescence and adulthood.

My child already receives special education services as a child with Intellectual Disability at school – why do I need an outside evaluation?

If you have a child who has received a school-based assessment of ID, you may wonder why additional assessment is necessary. You should know that a school-based assessment is used to determine the child’s educational eligibility for services at his/her school (requirements may vary by state). However, even if your child meets criteria for special education services under the disability eligibility category of ID, this does not equate to a medical diagnosis of ID. A medical diagnosis of ID (typically given by a psychologist or a developmental pediatrician) is based on diagnostic criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). This medical diagnosis will help to qualify your child for therapy services.

How is Intellectual Disability assessed?

An experienced professional, such as a psychologist, should gather information from multiple sources. A good psychological assessment should include:

• A parent/caregiver interview,

• Parent/caregiver and teacher (if applicable) questionnaires, including behavioral rating forms and a measure of your child’s adaptive behavior,

• A review of any relevant paperwork, and 

• Direct testing with the child, including a measure of your child’s cognitive abilities (often known as IQ testing).
  

What should I do to prepare for an assessment?

• A critical component of the assessment process includes an interview with the family. For young children, the psychologist speaks with the parent(s) or caregiver(s). Older children may be included in the interview process. The psychologist will want to know about your child’s early milestones. A lot of families report that it is helpful to bring in or review their child’s baby book to refresh their memories. 

• If your child has received any previous evaluations or has a history of services (e.g., therapies or school services, such as an Individualized Education Program or 504 Plan), your psychologist will want to review this information. Bring in relevant copies on the day of your assessment.

• The psychologist will want to do direct testing with your child. Make sure your child is prepared for the day. Try to make sure they get a good night’s sleep beforehand, and do not bring them in hungry. You may want to bring in other items to keep them comfortable throughout the appointment (e.g., snacks, drinks, preferred toy(s), a jacket in case the office gets too cold).

• You will have a follow-up appointment with the psychologist. During this appointment, results of the evaluation will be discussed in detail. This will include a description of the tests used, testing results, a discussion about diagnoses, and recommendations. Remember, the psychologist is there to answer any questions you have, so you are encouraged to ask questions.

Resources for families

Families can access a variety of resources to help them navigate the challenges and provide the best possible support for their child. While the following resources are offered, remember that the specific needs of individuals with ID can vary widely, so it’s essential to tailor resources and support to their unique needs. It's crucial to work closely with professionals and adapt strategies based on your child's individual needs and strengths.

• Special education programs: Public schools typically offer special education services, including Individualized Education Plans (IEPs) tailored to the child's unique needs.

• Therapies and interventions: Access therapies and interventions such as speech therapy, occupational therapy, physical therapy, behavioral therapy, and vocational training to address specific needs and skills development.

• Support groups: Joining a support group for parents of children with autism can provide emotional support, share experiences, and offer practical advice. Connecting with other parents who understand your experiences can be invaluable. Some organizations also offer support groups specifically designed for siblings of individuals with ID, helping them cope with the unique challenges they may face.

• Adult services and transition planning: Begin planning for the transition to adulthood early, as it involves considerations such as housing, employment, and ongoing support. You may want to explore options for supportive housing or residential programs designed for individuals with ID, if needed. Local agencies and organizations can provide guidance.

• Legal and financial planning: Consult with professionals who specialize in special needs law and financial planning to ensure your child's future is secure. In some cases, parents or caregivers may need to pursue guardianship or conservatorship to make legal decisions on behalf of their adult child with ID. This allows them to manage financial matters, make medical decisions, and ensure their child’s safety and welfare.

Websites that may be helpful on your journey

• des.az.gov/services/disabilities/developmental-disabilities/determine-eligibility 

• www.azed.gov/specialeducation/transition 

• des.az.gov/services/employment/rehabilitation-services/vocational-rehabilitation/pre-employment-transition 

• raisingspecialkids.org/transition-to-adulthood/ 

• thearc.org

• www.bestbuddies.org 

• jitp.info/ 

• www.cdc.gov/ncbddd/childdevelopment/positiveparenting/index.html 

• www.specialolympics.org 

• siblingsupport.org

We are here to help

Seeking evaluations can feel like a daunting process for many families. We understand and try to make it as easy as possible for you and your child. We provide ADHD evaluations for children and adolescents in Tucson, Arizona. Our child psychologist has extensive experience in the assessment and diagnosis of ADHD. Reach out today. We keep our waitlist short, and we do not require referrals.