Pervasive Developmental Disorders

1. Pervasive Developmental Disorders Autism Spectrum Disorders Rett Syndrome Childhood Disintegrative Disorder Other non specified Teresa Krawczyk EDN 410 fall 09

2. PDD (Pervasive Developmental Disorders) In general this category of disorder and its subcategories are characterized by: • impaired social interactions • Impaired communication skills • poor verbal abilities • limited number of interests • poor imaginative activity • activities that tend to be highly repetitive (Vaughn 2007)

3. Autism- Autism Spectrum Disorders(ASD) Autism is also called classical autism. According to Vaughn (2007) it is a developmental disability characterized by extreme withdrawal and communication difficulties. The National Institute of Neurological Disorders and Stroke (NINDS) a sub group of the National Institute of Health (NIH) tells us it is “a range of complex neurodevelopment disorders.”(2009)

4. Autism-Characteristics (NIH 2009) • Impaired social interaction • Little smiling or response • Does not make friends • Lack of social play • Misreads social cues • Avoids eye contact • Repetitive behaviors: • Rocking • Twirling • Hand flapping • Clicking • Third person speech • Poor language skills • Using memorize phrases to communicate (canned speech) • Inflexible in routines or ritualistic in behaviors. • Fixation on object or subject. • Poor or no imaginative play • Lacks empathy • Excessive object organizing • Lining up toys or objects • Baby does not point or babble http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

5. (NIH 2009) Autism -Etiology and Prevalence • There is no concrete cause of autism. The only thing that has been ruled out is bad parenting. Everything else is theoretical. • There may be a hereditary predisposition to autism. • Some studies link environment as well as genetics as causes. Much misinformation is available and source materials must be scrutinized carefully. • NIH reports 3 to 6 of every 1000 children have autism. This reduces to 1 in a range of 167 to 334 children. (NIH 2009)

6. www.autism.org This website contains a variety of links ranging from issues (e.g., autistic savant, self-injurious behavior, social behavior, and self-stimulatory behavior) to interventions for individuals with autism (e.g., auditory integration training, music therapy, physical exercise and autism, and self-management).

7. www.autism-pdd.net This website is the autism and pdd support network, which provides information on the key issues associated with autism and pervasive developmental disorders. It contains information regarding diagnosis and testing, treatment, TEACCH, IDEA, computer technology, and so on. I was impressed with the webinars offered. * (It also has a link to the CDC report on Thimeserol and vaccine related issues.)

8. www.autism-society.org “The Autism Society of America serves the needs of individuals with autism and their families through advocacy, education, public awareness, and research. This website also contains a variety of resources on individuals with autism (various state agencies, downloadable information packages covering various topics from diagnosis to transitional services, etc.).” (Vaughn 2007)

9. Asperger Syndrome History Sometimes called high functioning autism this syndrome has only recently been accepted by professionals. In 1940 Hans Asperger published his first paper on his observations. He followed that paper with another in 1944 which prompted Asperger Syndrome’s (AS) addition to the Diagnostic and Statistical Manual of Mental Disorders.(DSM IV) (Kirbey 2007)

10. Asperger Syndrome Characteristics • Normal or even high IQ: • Children are often said to sound like small adults or teachers • Normal language development • May exhibit autistic mannerisms • Deficient social skills: • Recognizing personal space • Poor peer relationships • Extreme Naiveté • Deficient communication skills: • Difficulty understanding sarcasm or figurative speech • Takes over conversation or breaks in whether appropriate or not. • Difficulty with transition or change • Tend to eat the same things in the same way each day. • Hyper awareness of sensory input: • Hears things most do not such as electronic devices, clock mechanisms and metal stress in air vents. • See things most do not notice such as Florescent light flickers or dust glare • Often need softer clothing for touch sensitivity. Cotton sheets on the bed can cause sleep difficulty. • Fixations on one subject/ object: • May become expert on one subject • Preoccupation with parts of objects. (Kirbey 2007)

11. Asperger Syndrome Causes Is primarily thought to be caused by the same things that cause classical autism and the prevalence is typically imbedded in that group. (NIH 2009) There are several studies including drug trials and scans of the brain looking for changes in function that are causal.(NIH 2009) http://www.ninds.nih.gov/disorders/asperger/asperger.htm

12. O.A.S.I.S. Online Asperger Syndrome Information and Support www.udel.edu/bkirby/asperger This website provides information and support for individuals and families with Asperger syndrome. A small sample of the content: • Definition and Diagnostic scales • Social implications • Strategies • Summer camp opportunities • Legal resources • Assistive software programs

13. A very rare disorder affecting primarily females. The onset of symptoms typically begins between five months and four years of age. (Vaughn 2007) Typically symptoms appear after a period of seemingly typical development. Most parents report a stagnation of skills near age two. The syndrome causes problems with brain functions controlling cognitive, sensory, emotional and even autonomic systems. ( IRSF 2009) Rett Syndrome (Vaughn 2007)

14. Rett Syndrome -Characteristics (NIH 2008) • Decelerated head growth after some post natal normal development • Hand skills regression to repetitive hand motions. • Loss of social engagement • severely impaired receptive and expressive communication skills • Shaking of the torso • Toe walking or an unstable gait or stiff legged gait. • Teeth grinding • Abnormal sleep patterns • Difficulty swallowing • Irritability or agitation • Chilled extremities • Joint contracture worsening with age. http://www.ninds.nih.gov/disorders/rett/detail_rett.htm#118323277

15. Rett SyndromeHistory A Viennese pediatrician, Dr. Andreas Rett saw similarities of symptoms between some of his female patients in 1954. He began searching for others with similar symptoms in other areas of Europe. He published his study in 1966 in a German Journal with little widespread notice. Finally in 1983 the syndrome was named for Dr. Rett. (IRSF 2008)

16. Rett Syndrome -Etiology and Prevalence • Rett is an X-linked dominant disorder thus it is typically thought of as a female disorder. (NIH 2008) • Although genetic in origin it is random in occurrence and is not hereditary. (NIH 2008) • Any one of approximately 200 different mutations appear in the MECP2 gene, which is found on the Xq28 site of the X chromosome. Scientists believe the MECP2 gene contains instructions for making methyl cytosine binding protein 2 (MeCP2). This protein signals other genes to function. When this communication breaks down it is we see symptoms. (NIH 2008) • 1 of every 10,000 to 15,000 live female births worldwide is affected. Race or Ethnicity do not seem to be factors. (NIH 2008) http://www.ninds.nih.gov/disorders/rett/detail_rett.htm#118323277

17. Rett Syndrome Dr. Rett once said "they feel all the love given to them. They have a great sensitivity for love. I am sure of this. There are many mysteries, and one of them is the girls’ eyes. I tell all the parents to look at their eyes. The eyes are talking to them. I am sure the girls understand everything, but they can do nothing with the information." (IRSF 2008)

18. Rett Syndromehttp://www.rettsyndrome.org/ The International Rett Syndrome Foundation web site has more information about Rett Syndrome as well as possible testing and treatment suggestions. It is primarily a fundraising and research site.

19. ChildhoodDisintegrative Disorder The neurological condition where normal development occurs until age two which is followed by a severe deterioration of mental and social functioning, until it regresses to autism symptoms. It is also sometimes known as Heller’s syndrome after Theodore Heller. (Hendry 2000) (Vaughn 2007) Hendry CN (January 2000). “Childhood disintegrative disorder: should it be considered a distinct diagnosis". Clinical Psychology Review. 20 (1): 77–90.

20. Childhood Disintegrative Disorder - Characteristics (Mayo 2008) • Loss in expressive language skills • Loss of receptive language skills • Regressing social skills • Regressive self-care abilities including bladder and bowel control. • Loss of motor skills • Failure to make friends • Sharing is foreign • No empathy • Lack of imaginary play • Repetitive, ritualistic routine driven. • Catatonia • Fixations http://mayoclinic.com/health/childhood-disintegrative-disorder/DS00801/DSECTION=symptoms

21. ChildhoodDisintegrative Disorder Etiology and Prevalence There is no definitive cause of CDD, although it is thought to stem from similar problems like autism. Current research is suggesting that an autoimmune response might be causing the body’s immune system to attack normal components as if they were foreign entities. (Mayo 2009) According to the NIH fewer than 2 of every 100,000 children diagnosed with ASD are CDD. Thus for the general population the children at risk will be a little less than 1 child in 8.3 million. A rare disorder indeed. (NIMH 2009) http://www.nimh.nih.gov/health/publications/autism/introduction.shtml

22. PDD - NOS Children with Not Otherwise Specified PDD show stereotypical behaviors or delays in social interaction or communication ability, but do not fit the other PDD subcategories. Yale School of Medicine calls it a “subthreshold condition” having some but not all PDD symptoms. (Vaughn 2007) (2009) http://www.med.yale.edu/chldstdy/autism/pddnos.html

23. General classrooms suggestions for children with PDD. Effective Strategies with Inclusion • Keep to a daily schedule. Post the schedule where the child can see it. • Give a warning before transitions so child can prepare for changes. • Be consistent in attitude and style. • Practice for events repeatedly before they happen (i.e. Assemblies, fire drills) • Be acutely aware of noise levels in the room. • Know your student’s family and seek their support and advise. • Know the student’s triggers and preferences and accommodate them. • Find out what sooths your student and have that available. • Use the Positive Behavior Supports (PBS) • Minimize the attention drawn by disruptive behavior. • Minimize distraction. • Support spoken instruction with written instruction. • Keep reassessing strategies and their efficacy.

24. Specific suggestions for children with PDD. Effective Strategies with Inclusion • A daily schedule posted where the child can see it allows for less talk. Some PDD students need a visual list to know where they are in their day. A small pictorial or written schedule can provide their eye’s a backup to the receptive language that they often struggle with. • Transitions are a difficult time for most PDD students. Have a specific signal that you give to let your students know a change is coming. They can look at their schedule and see this is normal and follows the routine. Alternatively, giving a child access to a timer of some sort will alert them to a coming change without the teacher interfering. • In higher functioning students the child could be given the responsibility to warn the teacher when it is time to change activities. They then own the beast that bothers them. Although this can become problematic if the child becomes obsessive about watching the clock. Here again we must know our student’s limitations.

25. Effective Strategies with Inclusion • PDD students have difficulty filtering environmental input or distraction in the classroom. According to New Horizons even a parapro or intervention teacher can be a distraction. These children cannot listen to two voices at once. Wait until the speaker is finished before speaking to the child. (2003) • Support spoken instruction with written instruction whenever possible. Since much of the disorder is communication inability multiple opportunities for exposure to the same information is critical. (New Horizons 2003) • Be acutely aware of all noise levels in the room. It is not just people speaking, it is ticking clocks, static from a P.A. system, electronic hum of computers, fans, etc. Since this child may have very few filtering abilities the noises accumulate to cause an overstimulation and possibly what parents call melt downs. Turn off any unnecessary devices. Go into the room while it is empty and listen carefully. What do you hear? http://www.newhorizons.org/spneeds/autism/doyle_strategies.htm

26. Effective Strategies with Inclusion • Minimizing distractions takes on new levels of meaning with these students. Too many decoration in a room can be terribly distracting so eliminate visual clutter. Limit the amount of decoration on the walls to useful reference material. Allow an area at the back of the room for displays where it is not the student’s visual field. • Place curtains over open shelving in the student’s field of view. • Design visual boundaries. Autistic students do not typically segment their environments and need a bookshelf or divider to signal a change of purpose or activity. Even a carpet square or floor tape can help separate spaces.(Stokes 2008) Some classrooms have story carpets or art tables; these delineate a purposeful space. • Only place supplies needed or work to be completed in front of the child. They can easily become overwhelmed by too much “stuff” to deal with. They can become preoccupied with the extras and distracted from the task.(Stokes 2008) Written by Susan Stokes under a contract with CESA 7 and funded by a discretionary grant from the Wisconsin Department of Public Instruction. http://www.specialed.us/autism/structure/str10.htm

27. Effective Strategies with Inclusion • Practice makes perfect the old adage goes. Practice for events repeatedly before they happen, so there is no surprise. (i.e. Assemblies, fire drills) • Know your student’s family and seek their support and advise. They have been living with this child and know the quirks and personal preferences. They have ways of dealing with behaviors which if positive should be reinforced anywhere the child goes. Consistency between home and school is comforting. • Know the student’s triggers and preferences and accommodate them. For example, if we know the sound of lockers slamming is a trigger, allow the student to where earphones during times of high locker use. • Find out what sooths your student and have that available. An example, we know that our Autistic 6th grader can self-calm by standing with his face in front of a fan, so we have a small desktop fan near his desk. He can move to the fan without question if he feels the need, or his teacher will suggest he “find his peace,” which is his cue to use the fan.

28. Effective Strategies with Inclusion • Natural lighting can also help reduce distractions. Since florescent lights have a mild flicker that many autistics see and a buzz they hear, the less those lights are used the better for the child. • Autistic students are emotionally aware of themselves and their needs so when they are having difficulty, witnesses will compound the problem. Minimize the attention drawn by disruptive behavior. Positive Behavior Support can go a long way in preventing disruptions. Quietly warn or distract the child if you see trouble starting. If intervention is needed keep it as low key as possible. For the students sake and yours. According to New Horizons others are looking at the teacher to gauge their own reactions to the child’s behavior. A calm teacher lends stability to all involved.(2003) • Be consistent always. These students need stability and structure. They need to know they can depend on their world being what they have grown to expect. Sudden changes in attitude or behavior on the part of the teacher can undermine the trust of the child.

29. UDL and DI inclusion applications Planners give personal power In my son’s classroom, we have planners which all students are required to fill in daily. This planner contains class times, assignments to be completed, readings to be done and all transitional points in the day are noted. For the typical child the planner is just an organizational tool, for our PDD student it allows for independence within his day. He can transition with the visual help of his planner and without the help of an intervention worker. In addition he sees the items on his list being checked off as we complete tasks and finds motivation in checking them off. There are electronic visual schedules available to schools at a cost. These can be extremely helpful to lower functioning students if the district will purchase them. If not as a teacher we may need to supply a copy of our daily schedule with words or pictures for the child to track their day.

30. UDL and DI inclusion applications Health Class or Science Class Self care skills are often an issue for PDD students so lesson plans that include taking responsibility for self care and opportunities to practice those skills are essential. This can be done by differentiating instruction of an inclusive lesson or through Universal Design of a lesson. Example: When teaching a UDL lesson about germs and viruses, the lesson plan would call for students to read about a germ, which catches some of the visual language learners. There is brief conversation about what they read for the auditory learners. We would include a brief video on how germs are spread and how they grow giving additional visual support to all learners. For the more tactile students a physical experiment with a spray bottle of water and a paper towel will lend support to the idea of transfer prevention as well as experiencing first hand what the video and written material are talking about. Next would be a written/drawn reflection or response to what was learned to deepen understanding and provide independent practice of new skills. Here we may use an assistive technology such as Alpha Smart or Symbols 2000 both of which are software for written work.

31. Group Projects UDL and DI inclusion applications • Students with PDD have difficulty with social situations so we should design lessons that push them gently into moderate social interaction where they can feel successful and included. This might be a research team, cooperative math group or a peer writing conference. The severity of the student’s disorder will determine how far we push them into the social situation. For support in the process we should prepare them with mini lessons on how our groups will function and what each person’s role is within the groups. This helps all students, but specifically targets those with socialization issues. • Groupings can also shelter some of our PDD students from negative stimulus. For example a science lesson on sound waves requiring the students to listen to how sound vibrates differently depending upon the medium. Listening to the waves may be too much for our PDD student but the partner can describe the differences. The listening is vicarious, but effective. Here the instruction is differentiated to accommodate a need.

32. A seemingly universal tip is to evaluate and revise after each lesson. Another is to know each student personally for best success. UDL and DI Tips and Resources. http://www.cast.org/teachingeverystudent/ http://www.ocali.org/at/udl_resources.php The Ohio Center for Autism and Low Incedence has a wonderful page of additional resources on UDL at this address. Let us also fully utilize the State of Michigan’s Positive Behavior Support program, which supports UDL. Click the figure for PAL/ CAST website link http://www.michigan.gov/documents/mde/Positivebehaviorsupportpolicy_172347_7.pdf http://www.brighthub.com/education/special/articles/15238.aspx

33. www.autismspeaks.org This site gives information on ASD in addition to offering public awareness events. They fund “global biomedical research into the causes, prevention, treatments, and cure for autism.” They work to give hope to families who deal with this disorder. Their logo is the puzzle piece that so many athletes and stars now wear or place on their equipment.

34. www.ussaac.org/links This website is for the Communication Aid Manufacturers Association. It contains additional helpful links to assistive technologies and a plethora of disability specific sites which include PDD organizations.

35. www.isaac-online.org This link will take you to the International Society for Augmentative & Alternative Communication. Here you will find helps and ideas for those who, as the site says, “communicate with little or no speech.” The site give more information about AAC research data and resources. This site might be useful with children with severe speech issues.

36. www.teacch.com This website is for TEACCH (Treatment and Education of Autistic and related Communication handicapped Children). TEACCH is part of the curriculum at University of North Carolina and has become a primary source of assistance to North Carolina’s PDD community. It prepares teachers, who work with local students in live classrooms. It works with several other agencies within North Carolina to both teach and further research into PDDs.