1. Asperger Syndrome and Traumatic Brain Injury
An Introduction to
What You Need to Know as an
Employee Assistance Staff Member
By Dr. Rozelle Copeland
Hello Everyone!
Thank you for joining me and the HPU University.
My name is Rozelle Copeland.
I am honored to be able to share with you some of my knowledge and experience.
I will have a spot for questions at the end of each topic.

2. Asperger Syndrome and Traumatic Brain Injury
What asperger syndrome and traumatic brain injury are
How each may impact how someone behaves and thinks
What supports and approaches work best
Where to find more resources
Today I will be presenting an introduction to Asperger Syndrome and Traumatic Brain Injury:
What asperger syndrome and traumatic brain injury are
How each may impact how someone behaves and thinks (a child and an adult)
how it impacts the family
what supports and approaches help
Where to find more resources

3. Asperger Syndrome
Also known as:
Asperger’s Syndrome
Asperger Disorder
Identified by Hans Asperger (1944)
Case studies in English (1981)
International Classification of Diseases in 1992
Entered DSM IV in 1994
Recognized by schools 1994
First, lets look at Asperger Syndrome:
Which is Also known as:
Asperger’s Syndrome
Asperger or asperger’s Disorder
Identified in 1944 by Hans Asperger, an Austrian pediatrician who described patients he was seeing.
Lorna Wing wrote about Asperger Syndrome in English in 1981.
Hans Asperger’s work was translated into English in 1991.
Asperger Syndrome Entered as standard diagnosis in 10th ed. Of World Health Organization’s International Classification of Diseases in 1992
and was entered in the Diagnostic and Statistical Manual of Mental Disorders 4th ed in 1994.
Recognized by schools as a category eligible to receive special education supports and services in I believe 1994.

4. Autism Spectrum Disorders
Autistic Disorder (“classic” autism) Significant language delays, social and communication challenges, unusual behaviors and interests. Many have intellectual disability.
Asperger Syndrome Milder symptoms; Social challenges, unusual behaviors and interests.  Usually no problems with language or intellect.
Pervasive Developmental Disorder – Not Otherwise Specified (“atypical autism”) Meet some of the criteria for autistic disorder or Asperger syndrome. Fewer and milder symptoms than autistic disorder. 
Cause
So, What is Asperger Syndrome?
Asperger syndrome is a developmental disability and one of the Autism Spectrum Disorders that appears in early childhood.
Autistic Disorder (or “classic” autism) This is what most people think of when hearing the word “autism.”  People with autistic disorder usually have significant language delays, marked social and communication challenges, and unusual behaviors and interests. Some people with autistic disorder also have intellectual disability, although it is very often hard to truly know what the cognitive level of a person with autism is because of the masking of symptoms and sensory challenges. Some people with autism do not verbally speak, but in a few cases they do begin to verbally speak later in childhood.
Asperger Syndrome People with Asperger syndrome usually have some milder symptoms of autistic disorder.  They usually have marked social challenges and unusual behaviors and interests.  However, they typically do not have problems with language or an intellectual disability.
Pervasive Developmental Disorder – Not Otherwise Specified (also called “atypical autism”) These are people who meet some of the criteria for autistic disorder or Asperger syndrome, but not all. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder.  The symptoms might cause only social and communication challenges.
There are also other disorders that are similar to Asperger Syndrome, such as Non-verbal Learning Disability, where person is very verbal, but has difficulties with social situations. Non-verbal Learning Disabilty presents as milder than the characteristics of Asperger Syndrome.
CAUSES:
Research studies to date have repeatedly found no link between vaccines and autism spectrum disorders and parents' fears to vaccinate their children are leading to outbreaks of childhood diseases in the United States. Thiomersal, which contains mercury, was largely removed from vaccines a couple of years ago and the rate of autism diagnoses has continued to increase. However, there is still on-going research further investigating any other links to vacinations.
Cause: Twin studies suggest a partial genetic link. Likely multiple genetic factor and environmental triggers during pregnancy. Also structural and functioanl changes in brain can be seen in children with aspergers compared to normal children.

5. What is Asperger Syndrome?
Different criteria
1) Unable to understand social aspects of
communication; poor social skills
2) Impairment in communication
3) Narrow, intense, repetitive interests,
activities, and patterns of behavior.
4) Sometime clumsy, poor coordination
More common in males
Incidence in children and adults
In defining Asperger Syndrome, there are 4 sets of Asperger Syndrome Criteria: including The DSM-IV and ICD-10 (World Health Organization, 1993) Gillberg and Gillberg (1989) Szatmari, Bremner and Nagy (1989)
The criteria are slightly different, there are also Different screen assessments that produce different diagnosis in the same individual..
Asperger Syndrome looks different in different people and there are degrees of the prescence of characteristics.
Asperger syndrome APEARS IN CHILDHOOD, usually very early, but by 3rd birthday. Delayed motor development milestones are noted as well as failure to point or use gestures, lack of eye contact.
Characteristics of Asperger Syndrome include:
1)Inability to understand social aspects of communication and poor social skills.
Limited ability to understand how to socially interact
Lacking or limited empathy, appear to not understand or be sensative to other’s feelings. Person does not understand what people think and feel around them, so they behave in ways that appear unsensative. More interested in solving a problem than meeting the social or emotional needs of others.
Difficult with the management and expression of emotions. May not express emotions to the satisfaction of others. May have limited or inappropriate facial expressions.
Have great difficulty reading other people or their expressions. Some have significant difficulty recognizing faces.
Great difficulty reading non-verbal cues (body language). Displays restricted use of gestures.
Lack of eye contact, or may be forced eye contact, or akward eye gaze.
May Prefer structure. Transitions difficult
May want to make friends but doesn’t know the social rules. May prefer to be a loner.
hard time knowing the difference between friendly teasing and malicious teasing; easy target for bullying
Temple Grandin (well known individual with high functioning autism, rather than asperger syndrome– she did not speak until she was 4 years old): She describes socializing with others as "boring" and has no interest in reading or watching entertainment about emotional issues or relationships.
Another characteristic is an Impairment in communication
These individuals typically have unusually sophisticted vocabulary, they are fluent and sometime display a formal use of language (Little Professors as children)
Literal use of language: my husband’s in the dog house, You are the apple of my eye– very confusing to them.
Trouble with shades of meaning. Trouble with or an inabilty to understand humor, as it can call for ambiguity, indiendo and abstract thinking. Their exptensive vocabulary can hides poor comprehension/understanding of shades of meaning, etc.
Talks in monotone, rigid, jerky or very fast voice. Volume and tone may be unusual or unmoderated. Speech may lack rthym, have an odd inflection or pitch. Abrupt transitions.
lack of turn taking in conversation--talks ‘at you’
Another characteristic is Narrow, intense, repetitive interests, activities, and patterns of behavior.
Some may have self stimulation activities such as rocking, spinning, arm flapping, hand flapping, etc.
Usually an intense all-consuming preoccupation with one or two narrow subjects. Will know everything in one or two topics of narrow focus and talk about the topic incenently, often with no point or conclusion. The subject may be complete or preclude some aspects of the topic. ie, memorize camera part numbers, but no interest in photography or engineering. Expert on vacuum cleaners or deep fat fryers. intense need for routine and consistency and can become anxious when routines are not followed
A final characteristic that is not always present is that the person may be sometime clumsy, have poor coordination. Move Awkward, walk is bouncy or stilted.
Asperger syndrome is More common in males, about 4 time more so according to the CDC.
Prevalence and incidence has varied considerable according to the source:
from the CDC: Autism Spectrum Disorders rates ranging from 2--6 per 1,000 children
with Co-occurring MR (approximately 25%--50% );
40% are not verbal. Rates are rising fast.
Asperger Syndrome prevalence rates also vary greatly per source: estimated at .2 to 3 or 4 per 1,000.
It is Less frequent than classic autism.
Adults are self diagnosing and people are being diagnosed as adults when they seek help for co-morbid conditions: depression, obsessive-complusive disorder, attention deficit hyperactity disorder (wrong planet)

6. Asperger Syndrome: Impact on How Someone Behaves and Thinks
Above average intelligence, memory skills, vocabulary skills, and perception to detail.
Strong sense of social justice
Invisible disability
May develop depression, anxiety and OCD
Many adults marry and work successfully
How might asperger syndrome impact how someone behaves and thinks?
Many people with asperger syndrome have average or above average intelligence, memory skills, and vocabulary skills, relative to the general population
Often very tuned into social injustices. Often direct and speak their mind.
Invisible disability that people don’t see, so they might attribute behavior to eccentricness, laziness, clueless, being self-absorbed, etc. There are usually few outward signs that identify the individual as having Asperger Syndrome. The lack of visibility can create situations where friends, teachers, co-workers, and new people fail to recognize a disability or the cause of the presenting signs.
May develop depression, anxiety and Obsessive Compulsive Disorder as co-morbid with asperger syndrome.
Many adults work successfully, but some may need encouragement and moral support to maintain an independent life.

7. Aspies and NTs “Why don’t we (NT’s) say what we mean? . . .
There is an asperger syndrome culture that has developed.
Aspies = are what some people with asperger syndrome call themselves. NT= or neurotypicals (rest of us)
People with AS often feel like “aliens” on this planet. They feel like they have to “pretend” to be normal
Confused by NT’s behavior:
Tony Attwood, 1998 p.9.:
“Why don’t we (NT’s) say what we mean? . . .
Why do we make trivial remarks that mean nothing at all?
Why are we so illogical (compared to people with AS)?
NEXT SLIDE
Hit escape, select movie web page at bottom tool bar.
Turn volume down during comercial
I am going to show a trailer for the movie that is playing now in select movies in limited locations.
Adam is a movie about a guy, who has asperger syndrome, and who meets a woman that he wants to date.
There is a scene in the movie that is not shown in the trailer that I would like to share:
Adam meets his new neighbor outside his apartment building on a flight of steps. Adam is sitting with a laptop in his lap reading about space. His new pretty neighbor approaches toting a stroller full of heavy groceries. They say Hi and Adam just starts going on about space facts. She begins dragging the cart of groceries up the long flight of steps. He continues talking at her about space facts. She says she has to go “haul these heavy groceries up all these steps now”. Adam says “okay”.
In the trailer, Adam is shown at lunch and at a party talking incensantly about what fascinates him: space.
Several scenes show him missing social cues and taking social pleasantries literally.
Several characteristics behaviors are shown in the scenes.
RECAP for anyone who could not clearly hear:
They are at a party meeting a friend’s new baby. When asked if they would like to see a baby video, he says “no thanks”, giving a direct and honest response to a social situation where many people would bow out gracefully and not offend the friend.
When his upset girlfriend asks Adam if he can give her a hug, he replies literally: “yes”. So she rephrases her question to “I’d like you to give me a hug”.
She makes a causal small talk comment that her windows are so dirty she can’t see the stars at night. He takes her comment to heart and puts on a space suit and drops down from the building to clean the outside of her windows.

8. Adam

9. Supports and approaches for someone with asperger syndrome
Research, read and learn about the disorder.
Learn about how Asperger Syndrome presents in the person/child.
Find a team of interdisciplinary professionals
Help others help the person/child.
Help the individual turn his or her obsession into a passion. Mayo Clinic, 2009
nurture and celebrate strengths; use strengths to compensate in other areas Cohen, 2004
find others in the same situation.
So, what supports and approaches work best for someone with asperger syndrome? Ever person with AS is different, so Focus on building strenghts and addressing person’s needs.
The Mayo Clinic had an excellent list of recommendations:
Learn about the disorder. Asperger Syndrome is a relatively new diagnosis. Do some research so that you better understand your or the person/ child's challenges and the range of services available in your state and, if a child, in your school district.
Learn about how Asperger Syndrome presents in the person/child. The signs and symptoms of Asperger's syndrome vary for each individual. Learn which situations and environments may cause problems for the individual and which coping strategies work. Keeping a diary and looking for patterns may help.
Find a team of interdisciplinary professionals.
Find a team of doctors, teachers and therapists who can help evaluate the options in your area.
Help others help the person/child. Most children with Asperger's syndrome have no visible sign of disability, so you or the individual may want to alert coaches, co-workers, relatives and other adults to the individual’s special needs.
Help the individual turn his or her obsession into a passion. A consuming interest can connect a child or adult with Asperger's syndrome to schoolwork/work and social activities. In some cases, kids with Asperger's syndrome can even turn their childhood fascination into a career or profession.
Dr. Temple Grandin, turned her love of animals, superior visual memory and picture thinking (more a characteristic of autism than asperger syndrome) into a profession helping to design more humane ways of designing shoots to help decrease stress among cattle.
Nurture and celebrate strengths and help the individual with AS use those strengths to compensate in other areas
Most parents of a child with asperger syndrome have a great deal of stress to cope with.
Find others in the same situation: There are hoards of support groups and resources for parents, families, individuals, spouses, and employers. Sometimes the best place to get help, is from other people who are experiencing the same thing you are and have learned what helps and what works.

10. More approaches…for children
Intensive, engaged early intervention program
Behavioral support program
Teach communication and social skills
Sensory integration and occupational therapy
Specialized speech therapy
Assistive and adaptive technology
Increase flexibility and stress management
Supervise unstructured time
Adapt the environment
Build on person’s interests to teach skills and increase success
More approaches…for children
Everyone is different, so again, you want to taylor supports and choose approaches to particular the person/child.
Get your child in an intenstive, engaged, early intervention program right away, the earlier the better and more favorable outcome. Contact school system. If a parent thinks their child is delayed in milestones, seek out a specialist for an evaluation or request one from the school free of charge. You do not and should not wait until the child is 3 years old.
important to start treatment as early as possible, and make sure it involves intensive, one-on-one interaction with your child.
Begin an intensive behavioral program right away. There are many to choose from.
Applied Behavior Anyalsis, Discrete Trial Therapy and the Lovas Therapy (one-on-one intensive, structured program using behavior modification to shape behaviors through reinforcement of desired behaviors)
"Floortime" Method is based on relationships with the child Point is to pick a therapy or method that best suits the child’s needs.
Make sure your child's therapy includes teaching communication and social skills.
The child may benefit from occupational therapy for sensory integration (SI) issues,
Specialized speech therapy for improving voice tone, pitch, rhythm, inflection, etc.
and
Assistive and adaptive technology. example: GAINING FACE: free software helps people with Asperger's syndrome, high-functioning autism, and similar issues learn to recognize facial expressions.
Publishing companies such as Pro Ed have lots of social skills curriculum taught in unusual ways, materials for teaching safety skills with pictures, visual and hands-on materials. Really neat stuff. They are also lots of other companies that market assistive technology.
Increase flexibility of time/scheule changes and stress management by teaching goal behaviors and skills.
Supervise unstructured time. Keep the environment predictable and familiar and prepare your child for changes, including preparing for unexpected changes.
Adapt the environment May ways to do this and many resources offer a lot of suggestions:
Use written and displayed routines, structure/rules
use visual organizers (lists, calendars) and written schedules
Establish clear expectations,
Decrease stress in the environment
Decrease distraction in the environement that are problematic: visual, noise, smell, lighting, temp.
Build on person’s interests to teach skills and increase success. Learning is more fun that way.

11. Approaches that help adults and children
Don’t assume that the person understands
Communicate clearly, logically, organized, concrete, concise. Avoid sarcasm, jargon.
Explain abstract concepts in concrete terms; state cause and effect relationships.
State what you would like person to do.
State expectations clearly.
Look out for sensory input in environment
Help them learn from other’s reactions what is being communicated.
(YourChild: Development and Behavior Resources, University of Michigan)
Approaches that help BOTH adults and children:
These come from YourChild: Development and Behavior Resources, University of Michigan. Great info and practical advice for parents and I would add adults, as well.
Don’t assume that the person understands. Check for understanding if this is an issue.
Communicate clearly, logically, organized, concrete, concise. Avoid sarcasm, jargon, double meanings. Everyone in the household should be encourage to do this and, if appropriate, invite co-workers to communicate this way as well.
Explain abstract concepts in concrete terms; state cause and effect relationships.
State what you would like person to do, rather than what you do not want them to do. This provides a more concrete way of teaching and communicating and cuts out a step.
State expectations clearly. Review the rules or company policies with the individuals. Use a calender to show due dates.
Look out for sensory input in environment– this may add more stress to the individual or make learning/working harder.
Look out for the person or child and teach them about non-verbal communication. Help them tell from other’s reactions what is being communicated and whether person is communicating well.

12. More approaches… for adults
Value a unique point of view
Different, not defective, way of thinking (Attwood, 2009)
Not everyone wants to be ‘cured’ or conform.
Adapt the environment to the person
Build on person’s interests to teach skills and increase success
Help support social relationships and flexibility
Improve communication skills
Join support and social groups
Educate others, mediators
Division of Vocational Rehabilitation
Social support for families of adults with AS
Some approaches that work with adults include:
Value a unique point of view
People with Asperger Syndrome just process the world differently than non-asperger syndrome people. Their uniqueness is a treasure. Support the person, how they want to be supported. People with Asperger Syndrome have different strengths, needs, and wishes. Make suggestions on what might help support them and ask them what works.
Not everyone wants to be ‘cured’ or conform.
Some people want research to find a key to what causes Asperger Syndrome, while some others (adults) do not.
Respect individual uniqueness and differences and don’t look at this like they need to change to fit in. They are perfect they way they are; it is the prescence of NTs that announce they are different and need to conform. There are many successful and bright people with Asperger Syndrome.
HUGE: Adapt the environment to suit the person (rather than change the person) Everyone is different- so what they might need adapted will depend on their needs:
Use written routines,
Provide a mentor
Advanced notice of meetings, and when person needs to speak at meetings. Maybe have option of submitting written info in lui of speaking at meeting.
Use of structure/rules
advanced notice/warning of changes to schedule, routines
Provide a “cheat sheet” of high-priority activities, projects, people, etc.
Provide concrete examples to explain appropriate behavior and to explain consequences of inapp beh
Training video
JAN, a websight has great list of accomadation ideas.
Again, Build on person’s interests to teach skills, rules and increase success
Help support social relationships and flexibility
Maybe there is a co-worker/friend who could buddy-up with person with Asperger Syndrome and be an available resource for further explanation of social situations at work or whatever else would SUPPORT the person in navigating the workplace. Help explain or describe the internal thoughts of people in social situations.
Improve communication skills through feedback or counseling
Join support and social groups
There are even dating/couples yahoo groups for people with asperger syndrome They have members provide support and advice on navigating the dating jungle, deal with long-term relationship issues surrounding communication and other difficult areas.
There is another yahoo support group for people married with asperger syndrome
Educate others about asperger syndrome, consider using mediators
Division of Vocational Rehabilitation can assist people with disabilities in finding employment
GRASP: The Global and Regional Asperger Syndrome Partnership has list of the equivalent by state.
Social support for families of adults with Asperger
Families of Adults Afflicted by Asperger’s Syndrome has coined the term Cassabdra Affective Deprivation Disorder: spouses and families develop problems from social and emotional deprivation and suffer consequences to health and mental status.

13. Where to find more resources
Autism Speaks AutismSpeaks.org
Family Services Resource Guide by location
Wrong Plant
MAAP Services for Autism, Asperger's, and PDD mapservices.org (219)
Autism Support Network (resources by location) www. Autismsupportnetwork.com
Asperger Syndrome and High Functioning Autism Association (AHA)
YourChild: Development and Behavior Resources, University of Michigan med.umich.edu/yourchild
Where to find more resources
A lot of these resources are nonprofit organizations with newsletters, info fact sheets, resources lists, support groups, blogging or chat areas, research, etc.
This list of resources is available in a word document on-line through Health and Performance Solutions University.
Autism Speaks is dedicated to facilitating global research into the causes, treatments and an eventual cure through funding research. They have a Family Services Resource Guide by location, autism in the workplace, social networks, outreach, grants, clinical trails.
Autism Speaks offers a comprehensive book called the First 100 Days Kit—a tool to assist families in getting the critical information they need in the first 100 days after an autism diagnosis.  
2,. Wrong Planet is the web community with discussion forum, article section, how-to guides, and a chatroom
3. MAAP Services for Autism, Asperger's, and PDD has: The Asperger’s Syndrome Packet
7. Autism Support Network (has resources by location, research, a large support community to connect with thousands of other families and individuals.
Asperger Syndrome and High Functioning Autism Association (AHA)
YourChild: Development and Behavior Resources, University of Michigan many topics.

14. Autism Network International (ANI) ani.autistics.org
Autism Society of America (301)
Families of Adults Afflicted with Asperger’s Syndrome faaas.org
Autism Research Institute (619)
Public school system College Living Experience is a college program for special needs students with several locations in the USA.
Think College
More educ and support groups:
Autism Network International (ANI) Autism Society of America Families of Adults Afflicted with Asperger’s Syndrome Support and info for neurotypicals. Information on Cassandra Syndrome
Autism Research Institute (ARI) in California
Public School System is an excellent resource for a child or preschooler. Schools offer special education services and supports to elidgable children.
College Living Experience (CLE) is a college program facilitating independent living for students with learning disabilities, Asperger’s Syndrome, autism and nonverbal learning disorders. CLE programs are located around the country, CLE programs facilitate a transition to college and independent adulthood in a supportive, structured environment that emphasizes the development of academic, independent living and social skills.
Think College- another similar program.

15. ASPEN: Asperger Syndrome Education Network aspennj.org
OASIS: Online Asperger Syndrome Information and Support (free software)
ASPEN: Asperger Syndrome Education Network aspennj.org
GRASP
First Signs firstsigns.org
Temple Grandin templegrandin.com
Tony Attwood
Pro-Ed Inc.
Autism Asperger Publishing Company
1) OASIS: Online Asperger Syndrome Information and Support The parents of children with Asperger Syndrome created this site that offers information on legal resources, diagnosis information, research, parent supports, and projects.
OASIS has a link to GAINING FACE: free software that helps people with Asperger's syndrome learn to recognize facial expressions.
2) ASPEN: Asperger Syndrome Education Network
3) GRASP: Global and Regional Asperger Syndrome Partnership– run by people with aspergers for adults. Education, support, advocacy, They will mediate between you and your boss, etc,. And be expert witnesses. They have a lot of info on housing and employment.
3.25) First Signs
3.5) Temple Grandin Books with tips and Employment Ideas for Adults with Autism
4) Tony Attwood
6) Pro-Ed Inc. is a leading publisher of resources and materials Functional Living Skills & Adaptive Behavior , teaching safety skills, asperger section, TBI materials.
Autism Asperger Publishing Company

16. Questions…?
Questions for 5 mintues or less

17. Traumatic Brain Injury (TBI)
Concussion
Head injury
Traumatic Brain Injury (TBI)
Concussion
Head injury

18. What is a traumatic brain injury?
TBI is defined by the Traumatic Brain Injury Act of 1996 (PL ) as:
-- external physical force
-- total/partial functional disability and/or
psychosocial impairment.
-- impairments in one or more areas:
cognition, language, memory, attention, reasoning, abstract thinking, judgment, problem-solving, sensory perceptual and motor abilities, psychosocial behavior, physical functions, information processing, and speech.
TBI recognized by schools as a category eligible to receive services in 1990 Public Law , IDEA, 1990
TBI is defined by the Traumatic Brain Injury Act of 1992 as:
An acquired injury to the brain caused by external physical force resulting in total or partial functional disability and/or psychosocial impairment. Includes open and closed head injuries resulting in mild, moderate, or severe impairments in one or more areas including cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory perceptual and motor abilities; psychosocial behavior; physical functions; information processing; and speech.
Changes in a person’s brain can have a dramatic impact on self, family, work, social, and community interactions.
The majority of TBIs are mild and may result in a brief loss (less than 30 minutes) or no loss in consciousness
TBI recognized by schools as a category eligible to receive services in Public Law , IDEA, 1990 Now 2004 (P.L ).

19. What is a traumatic brain injury?
Each year in the United States:
1.4 million people sustain a TBI: 50,000 die, 235,000 hospitalized, and 1.1 million treated.
475,000 of TBIs are children ages 0 to 14 years (CDC, 2007)
Highest rates among males ages 15 to 24 years of age (Brain Injury Association)
Falls (28%) are leading cause of TBI (0 to 4 years of ages and 75 + years). Vehicle (20%), struck by (19%), assault (11%) (CDC, 2006), firearms
Rate of 5.4 per 1,000 (CDC, 2003)
Soldiers
Center for Disease Control and Prevention: Each year in the United States:
At least 1.4 million people sustain a TBI.
Approximately 475,000 TBIs occur among children ages 0 to 14 years;
Highest rates among males ages 15 to 24 years of age (Brain Injury Association)
Falls are the leading cause of TBI (28%) . This category is high for children ages 0 to 4 years and for adults age 75 years or older. Vehicle accidents account for 20% with more teens in this category. 19% are struck by or against something. 11% are caused by an assault. Firearms are leading cause of death among TBIs. Othercauses include:, sports, rodeos, shaken baby syndrome, and abuse, etc.
Rate of 5.4 per 1,000 (CDC, 2003)
Soldiers; Alarmingly high rates of TBIs compared to previous decades. TBI can be caused by sound, exploding shrapnal, etc. Soliders are often dealing with post-traumatic stress disorder as well. The army, it’self reported this year that Mild traumatic brain injury, affects from 10 to 20 percent of service members returning from combat deployment in Iraq or Afghanistan. That is a lot more than the rate for the general population and it does not include moderate and severe TBIs.

20. How a TBI occurs Open head injury Closed head injury
Diffuse axonal injury
Open head injury– such as a penetating wound to skull
Closed head injury– falls, sudden stopping or whip lash
Diffuse axonal injury – brain is like jello in a hard container. If you shake the container or it falls, the jello travels at a different speed and hits the container on one side, then bounces back and hits the opposite side. Damage in two areas. Now, if there was a spin when the container fell, the jello moves back and forth while hitting. In the inside of our skulls, sharp bones protude, like the orbital bones behind our eyes. The brain was not designed to withstand high impacts and it tears on the inside of the skull. The nerves that run through out the brain get stretch and torn, as well, resulting in axonal shearing and loss of information pathways in the brain.
This type of injury results in massive brain swelling and intercranial pressure.
There is also Second Impact Syndrome – When a second TBI occurs before the first heals, for example where a boxer continues to box, or person continues to play sports after an injury.

21. TBI: Initial impact Initially and/or after delay there are symptoms
Loss of consciousness from minutes to days
Secondary damage
Amnesia
Initially and/or after delay, (sometime weeks) there are symptoms:
Mild: headache, confusion, dizziness, double or blurry vision, ringing in the ears, tired, behavior/mood/sleep changes, trouble with memory, concentration, attention. MRI and x-rays will appear normal, despite pronounced changes.
Moderate to severe: same, but more marked. Headache is severe and does not go away, vomiting, seizures, can not awaken from sleep, numbness, dilation of pupils, loss of coorrdination, slurred speech. CT scan will show damage.
Loss of consciousness under 30 minutes Mild; over 30 minutes is moderate and severe. Time unconscious is one measure of severity
Secondary damage This is a crucial aspect to understanding the progression of a TBI. After the initial injury, the body reacts. Many times massive secondary damage is cause to the brain from swelling in the brain, pressure inside the skull, drop in blood pressure, lack of oxygen to the brain, infection in the brain, and release of chemicals in the body. In many cases with secondary damage, the secondary damage can cause more damage than the intial injury. Immediate medical attention is imperative if a TBI has occurred.
Amnesia, not remebering events proir to the injury may occur. This is also used to measure the severity of the injury.

22. Recovery Rapid recovery initially Rehabilitation services
An interesting thing about most TBIs is that there is
Rapid recovery initially: The person may have to learn how to walk, dress, talk, feed self again. Then relearn a lot of things. These skills are recovered rapidly by persons with a moderate TBI. This rapid progress leads family to conclude that person will be “fine”. After rapid recovery, symptoms level off and at about the 1 year mark, family members begin to realize that there may be some more long-term effects of the injury.
Rehabilitation services are a key part to recovering and gaining information about the nature of the injury and TBIs in general.

23. TBI: impact on how someone behaves and thinks
Invisible disability
Effects of a TBI are fluid
No two injuries have the same effect
Long-term effects vary according to severity of injury, location and damage age, secondary damage, past TBIs, meaning to person, resources available
Inability to recognize changes from the TBI.
What impact does a TBI have on how someone behaves and thinks?
Can be an Invisible disability
The effects of a TBI are fluid: they often change rapidly, especially in the first year after injury.
Everyone is different: No 2 injuries have the same effect.
The long-term characteristics of someone who has sustained a TBI vary tremendously according to the severity of the injury and the location and extent of area of brain tissue damaged as well as other variables such as age (over 60 and under 2 have worse prognosis), degree of secondary damage, presence of past TBIs, past alcoholism, the meaning disability has to the person and family, resources available and whether the person completes treatment/rehabilitation, etc.
An interesting possible effect of TBI is the often inability of the injured person to recognize that he or she has changed or suffered the effects of a TBI. The person may remain oblivious to the fact that their abilities and behavior has changed.
A misclassification of a child or now grow adult may also result when an earlier mild TBI occurred and is not reported to current school or medical personnel. Also TBIs are misdiagnosed as psychiatric disorders, other medical conditions, etc when the occurance of a TBI is not reported.

24. Long-term Effects of a Traumatic Brain Injury
Mild TBI: physical effects, sensory perception effects, cognitive effects, language effects, behavioral/ emotional/psychosocial effects, academic effects, memory, social, attention difficulties, interaction of multiple effects (Siantz & Mira, 1999), sleep problems, and fatigue.
Expression and understanding difficulties
Problems with thinking, memory, reasoning, attention, concentration… lead to frustration, anger, anxiety and interfere with work/school.
Personality changes, aggression, socially inappropriate behavior, depression, mood swings
The long-term effects of a Brain Injury
MAY HAVE SOME OF THE FOLLOWING
The long-term effects for a person sustaining even a mild TBI may include: physical (such as sleep problems, and fatigue), sensory, cognitive, language, behavioral/ emotional/psychosocial, and academic effects. Frequently there are memory and attention difficulties, and an interaction of multiple effects (Siantz & Mira, 1999).
May have Problems with Expression and understanding
May have Problems with thinking, memory, reasoning, attention, concentration… lead to frustration, anger, anxiety In children, they may repeat grades or begin receiving special educations services. In adults this can interfer with work or college
May have personality changes, aggression, sexual aggression, socially inappropriate behavior, depression, or mood swings. These are some of the difficult changes to accept.

25. Long-term Effects Vegetative state with severe TBI Loss of peers
Can lead to suicide, alcohol and drug use
(Asarnow, Satz, Light, Zaucha, Lewis, & McCleary, 1995; Tyler & Mira, 1999)
Change of career path, unemployment (Roessler, Schriner, & Price, 1992;Bergland & Thomas, 1991)
In a severe TBI, the person may remain in a coma or be in a Vegetative state.
Many of the long term effects lead to Loss of Peers, Loss of Extracurricular and Athletic Activities Lonelyness, socially avoided or ignored at school.
Further difficulties include turning to (or back to) Alcohol and Drug Use And, for some, Suicide. Acquiring a TBI may mean lost hopes and dreams, such as altered plans to attend college, altered career plans, or loss of athletic or academic scholarships. These are abrupt changes in a person’s life path and can have devastating effects upon the individual. Simply realizing cognitive, behavioral, social, or physical changes in one’s self can be devestating.
Unemployment.
As a group, individuals with a TBI have a higher rate of unemployment compared to other groups (Asarnow et al., 1995).
The unemployment rate among previously employed adults with TBIs is 52% to 97% (Roessler, Schriner, & Price, 1992).
A change in career may be needed as a result of the injury.

26. Impact on Person’s Family
Family trauma, shock
Severe emotional intensity and grief for the person that once was.
Lingering feelings of sadness, conflict, anguish, feelings of guilt, numbness.
Changed family structure and social life
Changed family member (Williams, 1994)
Family coping
Siblings
Something to consider when a person sustains a TBI is the Emotional and Psychological Reactions of the Family.
Family trauma: The sudden and horrific change created by a TBI, has an effect not only on the individual, but the parents, spouse, siblings, and relatives also experience a trauma with significant ramifications.
The degree of emotional intensity that parents and spouses undergo is markedly severe. The range of emotional reactions that families will experience varies, and can include stages of grief for the person that once was.
Families reported grief, disappointment, and a sense of loss and the on-going nature of the dysfunction made closure problematic for some. Feelings of conflict and anguish concerning the person’s survival accompanied by feelings of guilt and numbness.
Changed family structure: A TBI can quickly change a normal child or adult to someone who needs fulltime support and rehabilitation, placing a significant demand upon the family (Singer & Nixon, 1993). This event can alter the family structure. The person’s social life and relationships may change, so may the family’s change.
Changed family member: The effects of a TBI are not only catastrophic for the individual, but the behavioral changes that may occur “are the most devastating and have the greatest impact on the family and quality of life”. Many families do not expect the person or child’s personality to change (Lezak & O’Brien, 1988; Williams, 1994).
Family coping: Several factors can influence a family’s ability to cope with TBI and raise stress:
Level of uncertainty About Recovery and the long-term affects of the TBI .
Burden of Cost.
Level of Knowledge about TBI
Pre-existing Family Dynamics.
degree of effective communication, optimistic outlook, family flexibility, adaptability, and cohesion.
Siblings are often neglected by necessity
These siblings demonstrate difficulties develop subsequent behavior problems, benefit from counseling and guidance

27. Supports and Approaches for Someone with a TBI
Interdisciplinary team
Rehabilitative care to regain/maintain maximum level of independent function.
If a child, notify the school before discharge
cognitive therapy and strategies to increase memory
behavioral and psychological services (family and alcohol and substance abuse counseling)
Assistive and instructional technology
Accommodation options
Section 504 Services for students
Americans with Disabilities Act and Rehabilitation Act
Supports and Approaches for Someone with a TBI :
Interdisciplinary team of doctors and therapists is vital to treating someone with a TBI
Rehabilitative care is vitally important after discharge from the hospital so that individuals with a traumatic brain injury may regain and/or maintain their maximum level of independent function.
(if a child) Notify the school before discharge to involve them in transition planning and begin the process of eligibility for special supports and services. This evaluation is performed by school testing personnel, is free of charge to the family. If the evaluation identifies a student as having a TBI, then the student is eligible for those supports that are needed to ensure that the child receives an appropriate education in the least restrictive environment with the consideration of a continuum of alternative placements.
Many types of Special Education Services . Such as: individualized academic and sensory instruction; social skills and social reintegration training; behavioral and psychological services ; occupational therapy; physical therapy; homebound educational services, extended school year or shortened school day, to name a few .
cognitive therapy and strategies to increase memory Cognitive Therapy is using your mind in various academic tasks. It is like studying for the SATs or GREs. The thought is to use the injured muscle to attempt to regenerate or repair neuological pathways in the brain.
behavioral and psychological services These services are provided by outpatient rehabilitation centers and other community-based facilities and schools.
Assistive and instructional technology: Whole universe of great stuff out there under adaptive and assistive technology and instructional technology. Examples include a custom designed fork, knife and spoon for someone with limited mobility. This could mean the person can feed themselves. Dragon and speak – software that types what you speak. There are software programs that read documents out loud to ease eye strain, headaches or limited eye sight. There are also programs that read aloud where you put a computer mouse or are voice activated, so a person can surf the net. Obtain accommodation options information and practical solutions.
Section 504 services. Another source of supports and services available to students with disabilities, such as TBI, are services provided under Section 504 of the Rehabilitation Act of Some students with a TBI may be better served in general education with services and supports under Section 504.
Educating employers about their responsibilities under the Americans with Disabilities Act and Rehabilitation Act;

28. More Supports and Approaches
Time management and organizational tools
Stress management skills
Adapt the environment
Research, read and learn about TBI
Organizations, resources, and support groups
Time management and organizational tools can help a lot.
Learning Stress management skills
Adapt the environment:
tape record meetings/classes
change lights to a dimmer switch
Research, read and learn about TBI. Having information regarding the stages of recovery may help reduce a person and a family’s stress. Families and Parents who are well informed about TBI may hold more realistic expectations.
Discover local, regional, and national organizations, resources, and support groups. Talking to others in the same situation will be the most valuable thing to offer as a resource.

29. Where to find more resources
Brain Injury Association of America, Inc. phone:
Traumatic Brain Injury
The Brain Injury Ring f.webring.com/hub?ring=bir
Brain Injury Directory braininjurydirectory.net
Resources: A lot of these resources are nonprofit organizations with newsletters, info fact sheets, resources lists, support groups, blogging or chat areas, research, etc.
1) Brain Injury Ass of America (1980), Large group BIAA provides information, education and support to assist the 5.3 million people with Brain injuries,families, professionals. Houses the National Brain Injury Information Center.
Traumatic Brain Injury
The Brain Injury Ring on-line community, Resources, and education.
Brain Injury Directory. Resources for the many issues that people with brain injuries are confronting in their day-to-day lives.

30. BrainLine.org www.brainline.org (703)998-2020
The Brain Injury Network: 1st survivor operated international organization braininjurynetwork.org
National Resource Center for Traumatic Brain Injury
BrainLine.org (703)
Traumatic Brain Injury: a Free Knowledgebase
The Brain Injury Network is the first survivor operated international non-profit advocacy organization.
National Resource Center for Traumatic Brain Injury
BrainLine.org Offers information and resources about preventing, treating, and living with TBI. Webcasts, an electronic newsletter for people with brain injury, their families, professionals in the field.
Traumatic Brain Injury: a Free Knowledgebase

31. The Rehabilitation Research Center www.tbi-sci.org/main.html
Job Accommodation Network (800) TBI Job Accommodation Fact Sheet jan.wvu.edu/media/employmentbrainfact.doc
U.S. Department of Labor’s Office of Disability Employment Policy
American with Disabilities Act
Individuals with Disabilities Education Act (IDEA, 2004) idea.ed.gov
Rehabilitation Centers
The Rehabilitation Research Center conducts research to better understand and improve outcomes after TBI.
Job Accommodation Network JAN a service provided by the U.S. Department of Labor's Office of Disability Employment Policy (ODEP). Mission is to facilitate the employment and retention of workers with disabilities by providing employers, people with disabilities, their family members with information on job accommodations, accessability, employment, self-employment and small business ownership.
Has: Job Accommodation Fact Sheet for TBI:
The U.S. Department of Labor’s Office of Disability Employment Policy
Americans with Disabilities Act of 1990 prohibits private employers, from discriminating against qualified individuals with disabilities in job application procedures, hiring, firing, advancement and make reasonable accomadations. The EEOC recovered $57.2 million in benefits for individuals with disabilties in 2008
Individuals with Disabilities Education Act (IDEA) idea.ed.gov/ law ensuring services to children with {qualifying} disabilities throughout the nation. Infants and toddlers with disabilities (birth-2) and their families receive early intervention services;. Children and youth (ages 3-21) receive special education and related services.
Rehabilitation Centers are an excellent source of info and explaining a TBI, as reported by parents in a study I conduct in 2000.

32. Questions…? QUESTIONS I see it is 3pm. NEXT SLIDE
I can continue to answer questions, but wanted to end the webinar for those who wish to end now. Thank you all for listening, I hope this has been helpful. There are handouts of the resourves available on-line. I’d like to thank Health & Performance Solutions University for inviting me to speak. Are there anymore questions?

33. Thank You I see it is 3pm. NEXT SLIDE
I can continue to answer questions, but wanted to end the webinar for those who wish to end now. Thank you all for listening, I hope this has been helpful. There are handouts of the resources available on-line. I’d like to thank Health & Performance Solutions University for inviting me to speak.
Are there anymore questions?