Cognitive, Learning and Developmental Disorders

• Cognitive, learning, and developmental disorders are brain-based problems that can affect an individual's ability to function at school, at home, in social situations, or in their community.
• Individuals with these disorders may present very differently from each other depending on the specific type of brain impairment they experience. They may have problems with learning, organization, attention, impulsivity, memory, judgment, decision-making, regulating or expressing emotions, social interactions, or self-care. It is important to understand each individual’s diagnosis—and their strengths and weaknesses—in order to work with them effectively.
• Some of these disorders can be present from birth and affect a person throughout their life. When a person experiences a lifelong mental or physical disability that significantly impacts their day to day functioning, we say that they have a developmental disability. Other disorders develop later in life as a result of injuries or underlying brain disease.

This section describes some of the more common cognitive, learning, and developmental disorders you may encounter as a BHA. Some of these disorders have client care chapters that you can refer to if you need more information.

Autism Spectrum Disorder (ASD) is a brain-based developmental disorder that covers a wide range of issues a person may experience within two domains:

1. Issues with social communication and interaction, such as:
   • Lack of interest in socializing with others
   • Difficulty understanding and following social rules (e.g., talking out of turn, understanding humor and sarcasm, personal space, and inappropriate information sharing)
   • Inability to verbally communicate
2. Restricted, repetitive behaviors, interests, and/or activities, such as:
   • Repeating phrases or words
   • Tapping or spinning objects
   • Ritualized behaviors (e.g., taking the same route or eating the same foods on a daily basis)
   • Being intensely focused on one or two areas of interest.
   • Unusually high sensitivity (hypersensitivity) or unusually low sensitivity (hyposensitivity) to light, sound, touch, taste, and/or smells. Responses to seemingly normal stimuli may be experienced as painful, unpleasant, or confusing.
   • Hypersensitivity: the child is unable to tolerate certain clothing materials, being touched, or being in a room with normal lights
   • Hyposensitivity: the child stares at bright lights, is not bothered by loud sounds, or does not respond when called by name

To have an ASD diagnosis, a person must have symptoms within both domains, however, each individual child’s symptoms may vary. In most cases, symptoms become noticeable before the age of 3.

Individuals with ASD have a wide range of presentations. Some people may have average or high levels of intellectual ability, but their social and self-care abilities are impaired. Others with more severe forms of ASD may be nonverbal or rely almost exclusively on others to meet their basic needs. It is important to identify and focus on an individual’s personal strengths and areas of weakness to work with them and their families effectively.

Learning Disorders are a group of brain-based disorders characterized by problems with learning, sorting, and storing information.

• People with learning disorders may have difficulty with one or more core skills, such as listening, speaking, reading, writing, math, or reasoning.
  • Specific types of learning disorders include reading ( Dyslexia ), writing ( Dysgraphia ), math ( Dyscalculia ), and others.
  • Difficulties in any of these areas may hinder employment, academic performance, achievement, and/or daily living activities.
• Learning disorders may overlap with environmental issues or other disorders. For example, learning disorders commonly occur with:
  • Traumatic brain injuries
  • Individuals who were prenatally exposed to alcohol or drugs (see Chapter E-5 on Fetal Alcohol Spectrum Disorders )
  • Attention Deficit Hyperactivity Disorder (ADHD); for more information on this, see Chapter D-13 Hyperactivity and Problems with Attention.

Intellectual disabilities are a group of brain-based disorders characterized by low intellectual ability and a limited ability to care for ones’ self in day to day life.

• People with intellectual disabilities have a significantly low intelligence quotient (IQ), which means that they may be limited in their ability to understand information presented to them.
• Intellectual disabilities may be expected to impact a person throughout their lifespan. They may need assistance to care for themselves and to make important medical, financial, or legal decisions. Many individuals with intellectual disabilities are unable to live independently, and they may reside with family members or in assisted living facilities.
• Intellectual disabilities sometimes occur as a result of other brain-based disorders. For example:
  • A person with FASD may experience an intellectual disability as a result of damage due to prenatal alcohol exposure.
  • A person with Autism Spectrum Disorder may have an intellectual disability as part of their ASD.
  • However, for most individuals with an intellectual disability, the underlying condition causing the disability (like ASD or FASD) is not known.

Traumatic Brain Injuries (TBIs) are a group of brain-based disorders that occur after a head injury:

• TBIs can range from mild to severe.
• Depending on the nature and severity of the injury, TBIs can involve a wide range cognitive problems, including memory problems, concentration and attention problems, difficulties with organization.
• TBIs can also result in emotional challenges, like anger outbursts or mood swings.
• A person with a TBI may be very sensitive to light, noise, or other stimulus.
• Finally, a TBI can result in changes in a person’s ability to accomplish daily activities. They may feel easily fatigued or lack motivation in a way that they did not prior to the injury. Or, they may display impulsiveness or poor judgment that was not present before the injury.
• Traumatic Brain Injuries sometimes result in other co-occurring problems. For example:
  • A person with a TBI may be at increased risk of developing depression (See Chapter D-8 Mood Disorders ).
  • A TBI may result in attention and concentration problems that appear similar to ADHD.

Fetal Alchohol Spectrum Disorders (FASDs) are a group of disorders caused by damage to the brain as a result of prenatal alcohol exposure.

• FASDs are medical diagnoses typically given by a medical provider with specialty training working as part of a diagnostic team. Because of this, FASD is not a diagnosis found in the DSM-5.
• Individuals with FASD can exhibit problems ranging from mild to severe.
• On the mild end of the spectrum, individuals may be challenged with learning problems, attention problems, emotional challenges (like mood swings), impulsivity, and poor judgment.
• A person with severe FASD may experience an intellectual disability and need assistance with all aspects of their day-to-day functioning. Sometimes, individuals with more severe FASD may be unable to live independently.
• Because FASDs are preventable, some BHAs may be involved in prevention work to teach about FASDs in order to help women and families make healthy decisions during pregnancy. For more information about FASD, please see Chapter E-5 on Fetal Alcohol Spectrum Disorders.

Dementias are a group of disorders characterized by reduction in cognitive functioning over time as the result of an underlying brain condition. A person with dementia may experience personality changes, and may gradually lose their memory and decision-making abilities.

• There are a number of brain disorders that may contribute to dementia, including Alzheimer’s Disease, stroke, Parkinson’s Disease, Huntington’s Disease, and brain damage due to substance use.
• Most (though not all) dementias develop in older individuals.

• Evaluation and management of dementia should involve a medical provider. If you are approached by someone concerned that they or a family member may be starting to develop dementia, it is important to refer them to a medical provider.
• More information about dementia can be found in Chapter D-20 Cognitive Changes in Aging Clients.

When working with individuals with cognitive, learning, and developmental problems, it is important to maintain a positive, strengths-based perspective. Within families, communities, and the society at large, there may still be stigma and judgment associated with brain-based disorders. Individuals with these challenges are likely to be impacted by ableism, which is discrimination and social prejudice against those who experience physical, intellectual, or psychiatric disabilities. Much of this judgment and discrimination may be based on a lack of understanding. People who experience these types of disorders are not “lazy” or “dumb.” Usually, they are not deliberately choosing to behave in ways that set them apart from others. They have many strengths and much to contribute to their communities when those strengths are supported and engaged. But because others may not understand these conditions, clients and families may need your help dealing with others’ perceptions, and family members may need to learn how to relate to their loved one in healthy and supportive ways.

There are some special considerations when working with children who experience cognitive, learning, or developmental problems:

• When you suspect a child has an undiagnosed learning or cognitive delay, ask your supervisor about referring the client for an evaluation or additional services, including tutoring or assessments.
• Be considerate of cultural and environmental factors. For example, people who speak English as a second language are often incorrectly flagged as having learning or cognitive challenges. Be sure to ask caregivers whether they see the child’s language or understanding as normal.
• Children who are diagnosed early and receive early intervention have significantly better lifelong outcomes.
• It is important to be aware that children with cognitive, learning, and developmental disorders may exhibit oppositional or defiant behavior—often because they struggle to keep up with peers, or because they find themselves in situations where understanding or communicating with others is challenging. You can help by accepting them for who they are and trying to understand what their experience feels like so that you can help them get to the root of their problems.
• Interventions for children with cognitive, learning, and developmental problems are usually a team effort that can involve the family, school district, behavioral health professional, and medical provider.
• Families may need support or reassurance when they have a child with a cognitive, learning, or developmental disorder. They may find that parenting strategies effective with other children are not working as well with their child affected by a brain disorder. It is helpful to reassure them that they are doing the best they can with unique challenges.
• Children with cognitive and learning issues are more likely to experience child abuse and neglect.
  • Supporting and educating the child and family can reduce this risk.
  • See Chapter D-3: Abuse and Neglect for more information.

For adults with cognitive, learning, and developmental problems, there are some additional things to consider:

• Remember that there are a wide range of presentations and severity experienced by adults with underlying brain conditions. It is important to gather enough information to understand each individual client’s strengths and weaknesses, their capabilities, and the areas where they may need additional assistance.
• Be mindful of reading challenges for adults with these disorders. When asking a client to complete paperwork, it is important not to assume that an adult can read well enough to complete intake paperwork or sign consents. Instead, you may need to read intake or screening documents to some clients.
• Some adults with more severe brain-based disabilities may have a legal decision maker. For example, parents may go to court to get legal guardianship of their adult child with an intellectual disability. Or, family members may obtain a power of attorney to make medical and financial decisions for an elder with dementia. It is important to be aware of the legal status of adults with these types of problems so that you know who needs to provide consent for treatment.
• For adults with more mild cognitive or learning concerns, it may be helpful to work with them to identify strategies that they can use to cope with specific challenges (for example, forgetfulness or impulsivity). The goal of such strategies is to reduce their frustration and the negative impact these symptoms have on their life.
• Be aware that some individuals with cognitive or developmental challenges experience problem (like impulsivity and poor judgment) that result in them being involved with the criminal legal system. As treatment providers, it is important to maintain compassion and understanding for individuals impacted by brain-based disorders, and to seek to increase community understanding of the ways that these disorder can impact behavior.
• Also be aware that people with more severe cognitive or developmental disabilities may be considered vulnerable adults, and they may be susceptible to abuse (including financial abuse) or neglect. BHAs are mandated to report these concerns to Adult Protective Services. (See Chapter D-3 Abuse and Neglect, and Chapter B-5 Mandatory Reporting and Duty to Warn ).

Referral information, including reports from medical providers, school staff, clinicians, or other sources regarding the client's wellbeing.

Releases of Information ( ROIs ) that are current or updated before getting information about the client from other sources.

Client history related to past traumas, academic performance, work performance, and past interventions.

Treatment Plan, including a history of presenting problem and recommended course of treatment. Review the DSM-5 for criteria on Learning Disorders.

Review the DSM-5for criteria on Autism Spectrum Disorder, Intellectual Disability, Learning Disability, and any other diagnosis you suspect of know a person might have.

When working with an individual with a cognitive, learning, or developmental problem, it may be helpful to have a supportive family memberavailable who can provide information about the client’s functioning and needs. Sometimes, clients with more severe impairment may be unable to provide an accurate and complete history themselves.

See Chapter C-1: Development Across the Lifespan to understand typical development. When you work with a person who may experience a learning, cognitive, or developmental disorder, remember that evaluation of these disorders is a complex process often involving multiple clinical professionals. You can help with this process by listening carefully to the person and their family’s concerns, asking follow up questions about areas of concern they are describing, and observing the person’s behavior with you and their family. Your ability to carefully describe and document your observations will be helpful for the overall evaluation process, though you are NOT expected to diagnose these disorders on your own.

General areas of concern:

• Early developmental problems
• Cognitive problems
• Learning/academic problems
• Poor social skills
• Limited communication skills
• Unusual behaviors or interests
• Challenges with emotional expression
• Adaptive functioning in adults

Early Developmental Problems:Babies and toddlers develop differently, and the age at which they reach milestones in many cases may not indicate the presence of a developmental problem. However, it may be important to ask about milestones to identify caregiver concerns about areas where a child has noticeably fallen behind her peers:

• Social development: did the child have trouble establishing eye contact, smiling at, or recognizing caregivers before age 1?
• Language development: when did the child start speaking, start using multiple words together, and start using sentences?
• Motor development: when was the child crawling, standing and walking?
• Toilet training: when did the child stop using diapers? Stop having accidents?

Cognitive problems:

• Listening skills (in children)
• Attention and concentration problems
• Memory problems
• Disorganization
• Language delays
• Confusion (primarily in older adults)

Learning / Academic Problems:

• Failure in specific subjects, or general school failure
• Avoiding written assignments or handwriting
• Frustration or disruptive behavior in the classroom
• Avoidance of school or academic tasks
• Self-reported challenges with reading, writing, or math (in older children and adults)

Social skills:

• Has trouble understanding other people’s feelings or talking about her own feelings
• Resists being held or cuddled by people she knows well and who are known to be safe and appropriate
• Is too cuddly or physical with others, such as people she doesn't know well or people who are expressing that they don't want to be touched at the moment
• Withdraws from social settings or prefers to be alone
• Appears to be unaware when other people talk to her but responds to other sounds
• Appears interested in other people, but uncertain of how to interact
• Has a hard time making or keeping friends
• Seems nervous in large social groups
• Does not engage in pretend play or does so less or much later than her peers (e.g., does not play house or use one object to represent an imaginary other object)
• Does not interact like others at her age level (acting instead like a younger child)
• Makes up stories or exhibits defiant behavior to hide problems with understanding and communicating

Communication skills:

• Avoids eye contact (not related to cultural practices)
• Has difficulty understanding body language

• Has trouble expressing his needs using typical words or motions
• Repeats or echoes words or phrases said to him or from movies, or repeats words or phrases in place of conversational language
• Talks only about himself and his interests
• Is nonverbal, or exhibits only limited verbal abilities by answering questions with 1-2 word responses
• Responds to questions in ways that demonstrate he did not understand what was asked

Emotional expression:

• Has rituals that he refuses to change
• Develops odd or repetitive movements
• Has unusual reactions to the way things smell, taste, look, feel, or sound
• Speaks in unusual ways or with an odd tone of voice
• Does not look at objects when another person points to them
• Has narrow, sometimes obsessive, interests
• Loses skills he once had (for example, stops using words he knows)
• Does not show interest in people or objects in his environment
• Is clumsy or moves awkwardly

Unusual behaviors:

• Has rituals that he refuses to change
• Develops odd or repetitive movements
• Has unusual reactions to the way things smell, taste, look, feel, or sound
• Speaks in unusual ways or with an odd tone of voice
• Does not look at objects when another person points to them
• Has narrow, sometimes obsessive, interests
• Loses skills he once had (for example, stops using words he knows)
• Does not show interest in people or objects in his environment
• Is clumsy or moves awkwardly

Adaptive functioning in adults:

• Demonstrates poor judgment and needs help to make decisions
• Struggles to dress herself and/or maintain good hygiene without assistance
• Struggles to take care of basic household tasks without assistance
• Can’t travel safely by herself
• Needs assistance from others when attending medical appointments
• Needs help to complete forms and paperwork
• Unable to manage her own money and pay her bills without assistance

Routinely review Chapter C-4: Common Treatment Interventions for how to prepare for and conduct interventions during appointments and for information on the levels of service available throughout Alaska.

Typically, assessment and care for individuals with cognitive, learning, and developmental disorders is a complex and multidisciplinary process. You will not be expected to assess and treat these individuals on your own:

• You should consult with your supervisor about the case.
• If the client is also assigned to a clinician, you should collaborate with them as well.
• If the client has not already been evaluated by a medical provider for these concerns, they should do this as soon as possible. Note that many of these disorders are the result of an underlying brain condition, and medical evaluation and management will be important for their care. You can help by obtaining a release of information and sharing your observations and any history you know with the medical provider. If an individual is experiencing sudden confusion or disorientation and the cause is unknown, they should seek emergency medical attention.

There are other services and agencies to be aware of when working with these clients. Obtain releases of information to refer clients for new services or to establish communication with service providers already involved in the client’s care:

• Children ages 0-3 with observed delays may qualify for assessment and intervention through the Family Infant Toddler (FIT) program or another early intervention program.
• Children ages 3-22 may qualify for Special Education Services to assist them with learning, cognitive, or developmental disorders that impact their ability to learn. When children are referred for Special Education Services, the school may consider existing records, or they may arrange for a comprehensive set of evaluations based on the concerns that have been observed. Based on their evaluation, they may work with the child and family to develop an Individualized Educational Plan (IEP) or 504 Plan to help meet the child’s needs in the school setting. These plans might include interventions like speech, occupational, or physical therapy.
• Children and adults with Intellectual or Physical Disabilities may qualify for Developmental Disability Services (DD Services). Many individuals enrolled in DD Services receive a Medicaid waiver, which allows for additional funds to be used to support their needs. The waiver may pay for a 1:1 direct care worker to spend time with the client developing skills at home and in the community.
• Adults with disabilities may also qualify for Vocational Rehabilitation Services, which provide funds, training and support so that individuals can successfully engage in productive activities in their community.

You may develop a treatment plan to provide interventions for the client and/or family. Treatment plans for individuals with cognitive, learning, and developmental disorders may focus on issues related to the following:

• Children ages 0-3 with observed delays may qualify for assessment and intervention through the Family Infant Toddler (FIT) program or another early intervention program.
• Children ages 3-22 may qualify for Special Education Services to assist them with learning, cognitive, or developmental disorders that impact their ability to learn. When children are referred for Special Education Services, the school may consider existing records, or they may arrange for a comprehensive set of evaluations based on the concerns that have been observed. Based on their evaluation, they may work with the child and family to develop an Individualized Educational Plan (IEP) or 504 Plan to help meet the child’s needs in the school setting. These plans might include interventions like speech, occupational, or physical therapy.
• Children and adults with Intellectual or Physical Disabilities may qualify Developmental Disability Services (DD Services). Many individuals enrolled in DD Services receive a Medicaid waiver, which allows for additional funds to be used to support their needs. The waiver may pay for a 1:1 direct care worker to spend time with the client developing skills at home and in the community.
• Adults with disabilities may also qualify for Vocational Rehabilitation Services which provide funds, training and support so that individuals can successfully engage in productive activities in their community.

You may develop a treatment plan to provide interventions for the client and/or family. Treatment plans for individuals with cognitive, learning, and developmental disorders may focus on issues related to the following:

• Working on time management, memory strategies, or other techniques to assist with cognitive challenges.
• Developing study skills and advocating for help for learning problems.
• Improving ability to communicate (verbally and nonverbally).
• Developing social skills focused on making and keeping friendships, or learning strategies to interact with people in public.
• Learning and practicing day-to-day activities related to general health and happiness.
• Developing coping strategies to manage situations that may be overwhelming or overstimulating.
• Developing a positive self-image that includes a realistic understanding of their own strengths and challenges.
• Strengthening the ability of family and community systems to support the individual.

Be sure you are familiar with the information in Chapter B-5: Mandatory Reporting and Duty to Warn and Chapter B-8: Documentation and Billing. Report instances of the following, consistent with your organization's policies and procedures:

• Child abuse or neglect.
• Elder abuse or neglect.
• Suicidal thoughts or plans.
• Intentions to cause harm or injury to the self or others.