Autism and Post-Secondary Education

According to the U.S. census, over a half million autistic students will turn 18 over the next decade/ Further studies show that many students diagnosed with autism are not prepared for the transition. Some and their families are opting towards a college education. More colleges are offering support services to autistic students including social, academic, and life skills.

The following resources provide information and articles on autism and college preparation:

11 tips for students with autism who are going to college (KFM)

20 great scholarship for students on the autism spectrum

College Autism Network (CAN)

College planning for autistic students (USC Marshall)

College students with autism need support to succeed on campus (Spectrum)

Families: Learn how to find autism-friendly colleges (U.S. News)

Going to college with autism (Child Mind Institute)

Helping students with autism thrive: College life on the spectrum (Madison House Autism Foundation)

Neurodiversity and autism in college (Psychology Today)

The transition to college can be tough, even more so if you have autism (Washington Post)

Advertisements

Down Syndrome Timeline

According to the CDC, Down Syndrome is the most common chromosomal disorder. Each year 6,000 babies are born with Down syndrome which is estimated to be about 1 in every 700 babies. Here is a timeline showing Down syndrome progression over the years:

Down Syndrome Timeline

1866- British Physician John Langdon Down, first described the genetic disorder as “Mongoloid” based on patients similar characteristics.

1876- An initial association between premature “senility” and Down syndrome is discovered.

1929- Life expectancy is approximately 9 years of age

1932- Abnormal distribution of chromosomes was first suggested as the cause of Down syndrome.

1946- Life expectancy is approximately 12 years of age.

1948- Evidence between Alzheimer’s and Down syndrome is first published.

1959- Dr. Jerome Lejeune discovered Down syndrome is the result of an abnormality in the chromosomes.

1959- The term Trisomy 21 is used on the medical community to describe Down syndrome.

1960- Researchers discover a type of trisomy called translocation

1961- Researchers discover a type pf trisomy called Mosaicism. 

1965- The World Health Organization (WHO) accepts the name Down syndrome as the standard name to use.

1970- Life expectancy is approximately 25 years of age.

1976- Amniocentesis comes into common use in the United States

1987- A gene associated with Alzheimer disease is discovered on Chromosome 21

1994- CDC announces he prevalence of Down syndrome from 1893-1990 was 1 in 1087.

1997- Life expectancy is approximately 49 years of age.

2006- Life expectancy is approximately 60 years of age

Reference

Centers for Disease Control and Prevention

Global Down Syndrome Foundation

New report shows slight uptick in autism prevalence

Published by: Spectrum
Written by: Jessica Wright

About 1 in 59 children in the United States has autism, according to data released today by the U.S. Centers for Disease Control and Prevention (CDC). Four times as many boys as girls have the condition, according to the report1.

The data are based on a 2014 survey of 325,483 children across 11 states. The data were collected by the CDC’s Autism and Developmental Disabilities Monitoring Network (ADDM).

These numbers show an increase of nearly 16 percent from the previous prevalence of 1 in 68 children. That estimate was based on data collected in 2012 and had a gender ratio of 4.5 to 1. Click here to read the rest of the story.

 

27 Facts On Stimming You Should Know

  1. “Stimming” is short for self-stimulatory behavior. (or stereotypical).
  2. It is common among people with developmental disabilities such as intellectual disabilities and Fragile X Syndrome.
  3. It is also prevalent among people on the autism spectrum.
  4. In fact in many cases, it is part of the diagnosis due to the repetition of stimming.
  5. Stimming is often used as a means to self-regulate, self-calm and for self-expression.
  6. The movements are repetitive and are used to self-stimulate the 7 senses.
  7. It is often described as a repetitive motor behavior that can disrupt academic and social and other activities.
  8. One of the theories behind stimming is that beta-endorphrins are released in the brain casuing an euphoric feeling which is generally a response to pain.
  9. Stimming behavior. based for self-soothing and to help a child or an adult regain emotional balance.
  10. Sensory Overload. Too much sensory information can lead to stress, anxiety and eventually a meltdown.
  11. It is observed in 10% of non-autistic children.
  12. common forms of stimming include spinning, hand-flapping and body rocking
  13. Benefits of stimming include the increased ability to remain calm, reduce meltdowns, and increased focus and time management skills.
  14. Love ones and society may consider stimming socially inappropriate
  15. Autistic people should be allowed to stim as much as needed
  16. Autistic people may bebefit from stress balls, fidget toys, and chewy jewelry.
  17. Stimming helps to relieve anxiety.
  18. Most people in the autistic community oppose attempts to reduce or eliminate stimming
  19. This is due to understanding that stimming is an important tool for self-regulation.
  20. Stimming can help block out excess sensory input
  21. Stimming helps provide extra sensory when needed
  22. repeated banging of the head actually reduces the overall sensation of pain.
  23. Visual. Repetitive movements such as fluorescent lights which tend to flicker.
  24. Smell (Olfactory) Includes repetitive behavior in licking, tasting objects,
  25. Tactile. Skin-rubbing, hand movement, and repeatedly grind teeth
  26. Vestibular. Moving body, rocking back to front, spinning, jumping and pacing.
  27. Vigorous exercise reduces the need to stim.

Picture

 

Reference

Autism Asperger’s Digest

Child Mind Institute

Diagnostic and Statistical Manual of Mental Disorders, (2013). APA 5th Edition

Science Daily

How To Organize Clothing In A Residential Setting

Organizing clothes in a regular household can be challenging. Imagine striving to clean, organize and store clothes when it is 12 people living under one roof! This can often lead to clothing getting mixed up causing further confusion.

There are a number of steps you can take that will help to alleviate this often challenging task:

  1. Create an inventory list for each person. This list should include a tri-annual schedule when clothing are sorted. Choose a time in the spring, fall and winter when to sort out clothing. An inventory list should also list the types of clothing and the number of items for each. Below is an example of an inventory.  You will find a free template here: clothing_inventory
  2. Spend a day with each person and go through the closet taking everything out. Sort the clothing and throw out anything that is torn or broken. People may have a favorite item they might like to wear. Look to see if it can get either fixed or replaced
  3. Once clothing is organized, choose a day with the person and determine a laundry day. While it can be easier to try to do wash clothing for several people at a time, you risk the chance of mixing up clothing.
  4. Always make sure if possible, the person participates as much as they can in this household task. It encourages independence and individuality at the same time.

I like to hear tips you use for clothing organizing for multiple people.

 

 

Autism Study Pairs Theatre With Peer Mentoring

Stage Curtain Theatre Theater Opera Stage
Published by: Tuscaloosa News
Written by: Ed Enoch

Researchers at the University of Alabama are preparing for a four-year study that pairs theater and peer mentoring to help improve social skills of adolescents with autism spectrum disorder.

“It is really good and healthy experience for the non-autistic peers to be a part of that,” said Susan White, principal investigator for the project at UA. “It is good on that side. It is really good for those kids who have autism to be part of something that is not just therapy.”

The heart of the theater exercise is helping adolescents with autism disorders pay attention and understand facial expressions and other nonverbal cues. Click here to read the rest of the story.

What is Prader Willi Syndrome?

May is Prader Willi Syndrome Awareness Month

What Exactly is Prader Willi Syndrome?

Prader Will Syndrome is a genetic disorder resulting from an abnormality of chromosome 15 such as a loss of active genes. In most cases (70%) the paternal copy is missing and in some cases (25%), will exhibit two maternal copies of Chromosome 15. The genetic disorder was initially described by John Langdon Down and was named after Drs. Andrea Prader, Heimrich Willi and Alexis Labhart in 1956 and is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

During childhood, individuals diagnosed with Prader-Willi Syndrome tend to eat constantly leading to obesity and for some, type 2 diabetes will develop. This complex disorder affects appetite,growth, metabolism, cognitive functioning and behavior.

Signs and Symptoms

People with Prader-Willi Syndrome (PWS) tend to never feel full (hyperphagia) which leads to constant eating. Signs in infants include, problems with strength, coordination and balance. Often there are feeding problems at birth, delayed speech and gross motor development. Children may be born with almond-shaped eyes and undeveloped sexual organs. Cognitive disabilities and developmental delays may also be present.

As children began to grow, constant craving for food often leads to behavior challenges including hoarding food, eating frozen food and food left in the garbage causing controlling or manipulative behavior.

Medical Issues

Medical concerns may include the following:

  • Sleep Apnea
  • Respiratory/Breathing
  • High pain tolerance
  • Severe stomach illness
  • Difficulty with vomiting reflex
  • Excessive appetite
  • Binge eating
  • Eye problems
  • Choking
  • Hypothermia
  • Leg Swelling
  • Consuming unsafe items
  • Negative reactions to medications
Teaching Strategies

Most people diagnosed with Prader Willi Syndrome fall between the moderate and mild levels of an intellectual disability meaning there may be challenges in the area of reasoning, problem-solving, planning, judgment, abstract thinking and learning.  A child or student functioning at the moderate level may lag behind their peers in the area of language and pre-academic skills. Adults may function at an elementary school level and will require support in both work and daily living skills. For children and students functioning at the mild level, there may be difficulties in the area of reading, writing, math and money management. as children grow into adults, there may be a need for support in abstract thinking, executive functioning (planning, prioritizing and flexibility) as well as short-term memory and money management.  Teaching strategies should focus on the following:

  • Aggression management
  • Anger management skills
  • Anxiety management
  • Emotional regulation
  • Personal safety
  • Social skills

Keep in mind that many children and adults diagnosed with Prader-Willi Syndrome may have additional challenges in learning due to medication. Some people take medication such as a growth hormone therapy which can cause fatigue.  The following teaching strategies may also be useful when teaching a student diagnosed with Prader Willi Syndrome:

  • Use a multi-sensory approach. This involves a teaching style that includes auditory, visual, tactile, spatial, and kinesthetic (hands on activities)
  • Break learning into small steps. Check for understanding by asking the student to repeat back to you.
  • Teach a skill at least 2-3 times a day. This will help the student retain information.
  • Managing perseveration. Set up a rule where the student can a question no more than 3 times. After the third answer. Ask the student to repeat the response back to you.
Adult Day Program/Residential Setting

Most people with Prader Willi Syndrome due to their cognitive level, will be provided services in either a day habilitation program or live in a community providing residential services. Once a person becomes an adult, it becomes a little bit more tricky on maintaining issues especially behavioral. For instance, while living at home, a parent has the right to lock the refrigerator which is often suggested by experts. However, this becomes a violations of a person’s rights once they reach adulthood. Typically, committees meet to help make the right decisions along with family members and the adult diagnosed with Prader Willi Syndrome. Here are some suggestions.

  • Allow the person to have control of what is important to them. Have discussions on nutrition and staying healthy. Check to see if this may be an appropriate topic the person may want to improve by adding to their person-centered plan. Hold discussion groups in both day programs as well as in residential to discuss various topics on health and nutrition including holding classes on mindfulness and meditation.
  • Trips to shopping malls can be very tricky. Try to avoid mall’s eatery and plan if it is a group trip to have people bring their own lunches.
  • When teaching, allow time before giving additional prompts
  • Give praise as much as you can when it is appropriate.
  • Use visuals as much as you can including graphics and pictures.
Staff Training

Staff training on Prader-Willi Syndrome should include the following topics:

  • Overview of Prader-Willi Syndrome including, causes, symptoms, characteristics, nutrition, and self-regulation.
  • Impact on the family including the stresses families experience.
  • Teaching techniques including problem-solving, forward shaping and role-modeling.
  • Individual rights
  • Managing behavior and crisis intervention
  • Community inclusion trips and activities
Resources

Foundation for Prader-Willi Research

Prader-Willi Syndrome Association (USA)

Prader-Willi Syndrome (Mayo Clinic)

Reference

Prader-Willi Syndrome Association

 

The Importance of Hearing Young People With Autism

Published by: U.K. Youth
Written by: Maya Hattenstone

There are around 700,000  people on the autism spectrum in the UK, many of these are young people and I am one of them. And you don’t hear from us often enough!

Being a young person with autism you can get lost in anxiety; worrying that people are judging you, that you are not accepted, that you sound strange when you talk. Too often we end up silencing ourselves with our self-consciousness.

I was diagnosed with Pathological Demand Avoidance Syndrome (a condition on the autism spectrum) when I was seven years old.  People with PDA have communication and social interaction difficulties. I found school life and academic work hard. In fact I found a lot of life hard.

For a long time I didn’t know how to be a voice and didn’t want to be a voice. So, like many autistic people my instinct was to withdraw – into silence in social situations, or simply avoid those awkward situations in the first place. Click here to read the rest of the story

Global Developmental Delays

Global developmental delays describes when children do not meet their developmental milestones. Generally from the age of 2 months to 5 years old. Although each child is different in their development, milestones are established in order to determine functional skills on age specific tasks.

Delays can occur in the following area:

Gross motor- Involves the use of larges muscle groups such as walking, crawling and standing. May impact children diagnosed with cerebral palsy.

Fine Motor- Small movement in the fingers used for drawing, painting, buttoning, coloring, and shoe tying.

Speech and language delay- A delay in language may be due to motor-oral problems.

Cognitive- Delays can be caused by, infections, ,metabolic, toxic, trauma, and chromosomal abnormalities (Down syndrome, Turner syndrome, etc.)

Social/Emotional Skills- Shows signs of delay in responding and interacting with other people. Common cause may be autism spectrum disorder

The following articles provide information on understanding global developmental delays:

6 things I’d tell the parent who just heard the word ‘Global Developmental Delay’

Causes and symptoms of developmental delays

Developmental delays and disabilities

Global Developmental Delay

How a child develops

Recognizing developmental delays in your child

Types of developmental delay in children

Understanding developmental delays

What causes developmental delay?

What you need to know about developmental delays

Anxiety On The Spectrum

Anxiety is one of the co-occurring  disorders that affect autistic children. A study published by the Journal of Child and Family Studies found that autistic children had higher anxiety levels compared to neurotypical children. It is estimated that 40% of autistic teens display signs and symptoms of anxiety.

Why Autism and Anxiety?

There are many reasons anxiety affects autistic children in large numbers. Bill Nason, moderator of the Facebook page, Autism Discussion Page and psychologist, explains that daily experiences that impact their nervous system including sensory, cognitive, social, and emotional vulnerabilities leave autistic children and teens with daily high levels of stress. He explains what comes naturally for neurotypicals, is hard work for them placing their nervous system on high alert even during its resting state. High levels of anxiety make take the form of mood swings, rigid and inflexible thinking and obsessive compulsive behavior.

What are the signs of anxiety?
Physical Signs

Complains about feeling sick

Complains about headaches

Difficulty sleeping

Fidgets and spins

Worrying

Worries about making a mistake

Difficulty in performing in exams

Is afraid of being placed in a new situation

Social

Apprehensive of meeting new people

Displays difficulty in joining new groups

Avoids interacting with peers

Worried about being laughed at.

Types of Anxieties

Anxiety of uncertainty- fear of anything new and unfamiliar
Social anxiety- difficulty interacting with others during social events
Sensory overload- Becomes anxious in settings that present strong sensory stimulation
Generalized  anxiety- non-specific ongoing pervasive anxiety

Strategies for Reducing Anxiety
  1. Rest
  2. Exercise or physical activity
  3. Allow time to participate in a favorite activity
  4. Self-stimulation can be used for calming purpose
  5. Relaxation techniques such as mindfulness and meditation
  6. Build structure into daily routines
  7. Review the day including what is expected of them
Additional Resources

Anxiety in autistic adults

Classroom ideas to reduce anxiety

Managing anxiety in children with autism