What you should know about severe autism

Media is slowly getting better in it’s portrayal of people with autism in both movies and television, while many still hold onto to the perception of “Rain Man”, I do believe we are moving in the right direction. Still, little is discussed or talked about when it comes to children and adults with severe autism. Some may refer to severe autism as “low functioning when in fact autism is a spectrum in both symptoms and behaviors and varies from person to person.

Children and adults with severe autism often display the following signs :

  • Impaired social interaction
  • Difficulty in communicating- both expressive and receptive
  • Obsessive compulsive disorder
  • anxiety
  • aggressiveness
  • self-injurious

According to the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there are 3 levels of severity based on social communication impairments, restricted, and patterns of behaviors. The severity level (Level 3) is defined as requiring very substantial support. For example the person may exhibit very limited initiation of social interaction and extreme difficulty with coping and change. signs may include an indifference in others, using negative behavior to communicate, very little or echolalia, sensory sensitivity will vary from severe to none, may be self-injurious and have an intellectual disability.  Below you will find articles on understanding severe nonverbal autism:

5 nonverbal children that found their voices

Autism: How do you communicate with a non-verbal child

Helping nonverbal kids to communicate

I have nonverbal autism…Here is what I want you to know

Nonverbal autism: Symptoms and treatment activities

Missing brain wave may explain language problems in nonverbal autism

Overview of nonverbal autism

What makes severe autism so challenging?

Why being nonverbal doesn’t mean being non-capable

Why children with severe autism are overlooked?

 

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Miami Lakes Deli Opens Its Doors Employing Adults With Autism

deli

Published by: South Florida Reporter

Mayor Cid had the idea to open his own Mayor’s Café while having breakfast at the popular Mayor’s Café in Pembroke Pines. During his visits, he often met Miami Lakes residents enjoying a sit-down breakfast.

“There was a big need for this type of breakfast venue in Miami Lakes,” he said. Cid partnered with two local residents, Danny Delgado and Jeffrey Rodriguez, to open Mayor’s Café. Click here to read the rest of the story

Developmental Disability Facts and Statistics

Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments before the age of 22. A developmental disability can occur before, during or after birth. Common well-known developmental disabilities include autism, Down syndrome, cerebral palsy and Fragile X syndrome. Here are some facts and statistics on developmental disabilities.

  • Developmental Disability is a severe, long-term disability that affect cognitive ability, physical functioning or both.
  • 1 in 6 or about 15% of children aged 3 through 17 have one or more developmental disabilities.
  • Between 2014 and 2016 the prevalence of developmental disability among kids ages 3 to 17 increased from 5.76 percent to 6.99 percent.
  • Prevalence of autism increased 289.5%
  • Prevalence of ADHD increased 33.0 %
  • Males have a higher prevalence of ADHD, autism, learning disabilities, stuttering and other developmental disabilities.
  • Children from families with incomes below the federal poverty level had a higher prevalence of developmental disabilities.
  • 10% of Americans have a family member with an intellectual disability.
  • Intellectual disabilities are 25 times more common than blindness.
  • Every year 125,000 children are born with an intellectual disability
  • Approximately 85% of the intellectual disability is in the mild category.
  • About 10% of the intellectual disability is considered moderate
  • About 3-4% of the intellectual disability population is severe.
  • Only 1-2% is classified as profound.

 

Resources

National Institute of Health

15 Teaching Strategy Resources for Students With Hearing Impairments

 

Accommodations for students with hearing loss

Five tips for teachers of students with hearing impairments

How to teach hearing impaired students: Strategies for success

Inclusive teaching: deaf and hearing impaired

Instructional strategies for students who are deaf or hard of hearing

Modern teaching techniques for deaf and hard of hearing students

Strategies for hearing impaired students

Suggested teaching strategies

Teaching a child with hearing loss

Teaching hearing impaired children

Teaching strategies for deaf and hearing impaired

Teaching strategies for hearing impaired students

Tips for teachers

Tips for teaching a preschooler with hearing loss

Visual teaching strategies for students who are deaf or hard of hearing

25 Resources on 504 Accommodations and Modifications

Section 504 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive Federal financial assistance from the U.S. Department of Education (Edefines a physical or mental impairment as any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.  

5 important classroom accommodations for children with autism

12 accommodations and modifications for dyslexic children in public school

20 modifications for students with autism

21 school accommodations available for children with special needs

504 accommodation checklist

504 plan: ADHD accommodations to manage ADHD symptoms at school

504 plan templates

A 504 plan for those with dyslexia

A parents guide to section 504

504 Education Plans

504 Plan: What is it?

Accommodations and supports for school-age students with autism

Accommodations for ADHD students K-12 in the classroom

Accommodations for students with learning disabilities

Classroom accommodations for ADHD

Classroom accommodations for dyslexic students

Classroom accommodations for students with epilepsy

Developing 504 Classroom accommodation plans

Dyslexia accommodations: How to know what your child needs

Dyslexia and accommodations- ADA guidelines for school and work

Examples of accommodations and modifications

Modification for students with Down syndrome

Section 504 and Discrimination

Section 504: sample accommodations and modifications

What are school accommodations and modifications for students with Asperger’s?

10 Important Facts On Trisomy 18

Today is National Trisomy Awareness Day. Below are 10 important facts on Trisomy 18.

  • It is also known as Edwards Syndrome
  • It is a condition caused by an error in cell division
  • An extra chromosome in 18 develops
  • Occurs in 1 out of every 2500 pregnancies in the United States
  • It is 1 in 6000 live births
  • Only 50% of babies who are carried to term will be born alive
  • Children are often born with heart defects
  • Features include a small head, small jaw, clenched fists and severe intellectual disabilities
  • It is named after John Hilton Edwards, who first described the syndrome in 1960
  • It affects different organ systems

 

15 Resources on Cerebral Palsy and Adulthood

Cerebral palsy is a condition caused by damage to the specific areas of the brain. Cerebral palsy refers to the brain and palsy to muscle weakness. Cerebral palsy is a syndrome of motor impairment with posture and movement disorder. It is a non-progressive disorder, however, as a person begins to age, muscle and skeletal problems begin to worsen resulting in more pain, discomfort and limited mobility. Due to muscle flexibility, strength and endurance issues, there is a greater risk of falls and injuries. The following articles includes information on understanding how aging and adulthood affect people with cerebral palsy.

5 common challenges for adults with cerebral palsy- Made For Movement Blog

Adults and cerebral palsy– Cerebral Palsy Organization

Adults with Cerebral Palsy- Cerebral Palsy Foundation

Aging with Cerebral Palsy and Chronic Pain– The Mighty

Care of adults with cerebral palsy-American Academy for Cerebral Palsy and Developmental Medicine

Cerebral Palsy and aging– Developmental Medicine and Child Neurology

Cerebral palsy and transitioning to adulthood-Cerebral Palsy Alliance

Cerebral Palsy effects through lifespan-Physiopedia

Cerebral Palsy in Adulthood– Everyday Health

Cerebral Palsy patients provide rare insight into aging– Cerebral Palsy News Today

Cerebral palsy symptoms in Adulthood- Healthfully

Living as an adult with cerebral palsy– Healthline

Living with cerebral palsy as an adult– WebMD

Progression and Correction of Deformities in Adult with Cerebral Palsy-ACNR

The good, the bad, and the ugly facts about adult cerebral palsy-Karen Pape

25 Developmental Disability Links and Resources You Should Know About

March is Developmental Disabilities Awareness month! Although I blogged  the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and a developmental disability.

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:

  1. Self-care– brushing teeth, hand-washing and combing hair independently
  2. Receptive and expressive language-ability to understand someone talking and to also be understood
  3. Learning– ability to read and write with understanding
  4. Mobility-ability to move around without any assistance
  5. Self-direction– time management, organization
  6. Capacity for independent living– requiring no supervision
  7. Economic self-sufficiency – having a job  and purchasing what one needs

The following are links to articles on various types of developmental disabilities including resources with facts and statistics, organizations, and sign and symptoms.

22q11.2 Deletion Syndrome

27 things to know about Fragile X Syndrome

ADHD- facts and statistics

Angelman Syndrome

Angelman syndrome resources

Cri Du Chat Resources

Developmental disability acronyms you should know 

Developmental disability awareness ribbons

Down syndrome-facts and statistics

Down syndrome timeline

Duchenne Muscular Dystrophy

Early Intervention- Resources and Information

Edward Syndrome Resources

Global developmental delays

Intellectual Disability Resources

Over 30 online resources on Rett syndrome

Pervasive DD-NOS

Prader Willi Syndrome Resources

Resources for teaching students with Down syndrome

Ring Chromosome 22 Resources

Teaching self-regulation and autism spectrum disorder

Things to know about Angelman Syndrome

Turner Syndrome Characteristics

What is Prader Willi Syndrome?

William-Beuren Syndrome Resources

Intellectual Disabilities And Epilepsy

According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder and affects people of all ages. In fact, 1 in 26 people have seizures and while people who are diagnosed with epilepsy may have no other problems, this is not the case for children and adults with an intellectual and developmental disability where the rates are much higher.

It is estimated that 30% of children with epilepsy also have another type of disability. Some studies show that children with an intellectual disability and cerebral palsy, had a 35% chance of developing epilepsy, children with an intellectual disability alone had an 8% chance and children with a brain injury occurring after birth stood a 75% chance of developing epilepsy. Statistically, the risky of a child with a developmental disability experiencing an unprovoked seizure by age 5 is 4 times likely than the general population. It is estimated 1.8% of U.S. adults have epilepsy compared to 22% among people with intellectual disabilities.

People with intellectual disabilities tend to also have worse prognosis with adults having a higher rate of death including Sudden Unexplained Death In Epilepsy (SUDEP).

Epilepsy

Epilepsy is a chronic disorder with recurrent unprovoked seizures. According tot he National Institute of Neurological Disorders and Stroke (NINDS), epilepsys are a spectrum of brain disorders ranging from severe, life-threatening to ones that are more benign. The International League Against Epilepsy created a new definition of epilepsy. A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two provoked (or reflex) seizures occurring greater than 24 hours apart.
  2. One Unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome

A seizure is defined as an event and epilepsy is the disease involving recurrent unprovoked seizures.

Intellectual Disability

According to DSM-5, an intellectual disability is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual social, and practical domains including deficits in intellectual functions such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experiences.  The severity levels range from mild to profound.

Although there is a high relationship between epilepsy and an intellectual disability, little research has been conducted on safe prescribing practices of an antiepileptic drugs for people with intellectual disabilities. What is known about epilepsy and an intellectual disability is that more severe disabilities are typically caused by damage to the brain

Why is it important to discuss?

Given the large number of people with an intellectual disability and epilepsy, treatment may be more complicated due to multiple impairments including people with a diagnosis of autism, intellectual disability and epilepsy. More research needs to occur which will help to reduce morbidity rates and help to develop accurate guidelines.

ISP Terms To Know

You are probably familiar with IEP’s if your child or family member attend a public school here in the United States. For some people with a developmental disability, the next step may be attending a day habilitation program where adults with developmental disabilities receive Medicaid Waiver Services and has what is called an Individualized Service Plan (ISP).  If you are new the ISP process, the following terms that you will hear often before, during and after meetings.

Assessments. Serves to develop a body of information about an individual’s desires and goals his/her capabilities in areas in need of learning and skill development and the experiences or supports that will promote achievement of those goals.

Background/History. Provides an overview of the life experiences of the person and family.

Goals/Service. includes person-centered supports to enhance opportunities for individuals to make choices that increase their quality of life. An example would be a goal of increasing money or budgeting skills.

Interest and Activities. Describes personal preferences, gifts and interests, as well as conditions to avoid.

ISP Plan. A living document that provides details about what is important to an individual with developmental disabilities. It reflects a person-centered planning process.

Natural Supports. Personal associations and relationships developed in the community that enhance the quality and security of the life for people including family and friends.

Provider Program. The name of the voluntary agency delivering direct care to individuals with developmental disabilities. Providers may offer a variety of services and supports.

Habilitation Service. Services that help you keep, learn or improve skills and functioning for daily living skills

Individual Service Environment. Provides self-directed, individualized assistance and support to individuals living on their own, either alone or with roommates in their own home or apartment.

ISP Meeting

ISP Revision. Revisions and changes to the ISP can occur when an individual experiences a change in need throughout the year and must be reflected in the ISP. It is not necessary to wait annually to make the revisions. The date of the revisions should be reflected in the ISP.

HCBS Waiver Services.  A Home and Community-Based Service (HCBS) Waiver is a Medicaid program designed to meet the needs of children and adults who prefer to get long-term care services in their home or community, rather than in an institutional setting.

Medicaid. is a jointly funded, Federal-State health insurance program for low-income and people in need including children and adults with disabilities. It is a government insurance for people whose income and resources are insufficient to pay for healthcare. A Medicaid number is needed for an ISP and is used to bill services.

Person-Centered Planning (PCP). An ongoing problem-solving process used to help people with disabilities plan for their future. It allows individuals to be engaged in the decision making process about their options, preferences and values.

Protective Oversight. is a documented and approved plan used for the sole purpose of enhancing individual safety. It list the key activities that affect health and wellness of an individual.

Safeguards. a measure taken to protect the individual from harm by providing information on how it will be addressed. An example is fire evacuation. If a person is not able to evacuate independently from a fire emergency, protections are put in place to ensure his or her safety.

Service Provider. The name of the voluntary agency delivering direct care to individuals with developmental disabilities. The provider may offer a variety of services and supports.

Value Outcome. Statements that represent what is important to the person. It may include what the individual needs, wants to change or would like to maintain in his/her life. Outcomes are developed through the ISP process.