1. Education of Children with High Functioning Autistic Spectrum Disorder: WHEN FINE ISN’T GOOD ENOUGH Lisa K. Krizman, Esq. Law Office of Lisa K. Krizman, LLC New Jersey New Jersey COPAA Annual Conference March 12, 2005 Atlanta, Georgia

2. ______________________________ This information is being provided as general educational and informational purposes only and NOT for the purpose of providing legal advice. It is not to be used as a substitute for personal legal counsel. Why this Presentation?

3. Presentation Overview Difficulties in Advocating What to Advocate For The Law Sample IEP Goals Working with Experts Sample Advocacy Script

4. “High functioning” Significantly Verbal to Very Verbal Average IQ and above Behavior can be appropriate at times Diagnosis includes: “High functioning”

5. “High Functioning” Newsweek (2/28/05) defines: Asperger’s-” Relatively strong verbal skills but trouble reading social situations and sharing enjoyment, obsessive interests. Children can be “verbal fanatics,” “social pariahs,” suffer “debilitating fits of anxiety and depression.” PDD-NOS- “Known as atypical autism, kids have less severe social impairments.”

6. Difficulties in Advocating Educators tend to DISMISS HF ASD children as doing “fine.” “Kids with Asperger’s, on the high functioning end of ASD, may be OVERLOOKED until well into elementary school.” (Newsweek, 2/28/05).

7. Just What Does “Fine” Mean? Is the child doing “fine” based on being given the same goals, over and over again? Is the child doing “fine” because the educator is looking only at the high level skills, not the low ones? Is “fine” based on the educator’s low expectations for that “type” of child?

8. Difficulties in Advocating The “latest rage” in the media. In fiction and nonfiction, in the past portrayed as “dangerously brilliant psychopaths,” “geeks,” “personality variants,” "mysteriously gifted.“ Recent media indicate a greater recognition of disorder, but tends to also dismiss difficulties. Your educators read this media.

9. December 2001 “The Geek Syndrome” “Autism - and its milder cousin Asperger's syndrome - is surging among the children of Silicon Valley. Are math-and-tech genes to blame?” By Steve Silberman

10. July 2003 “A World of Their Own”

11. September 2003

12. February 2005

13. February 2005 NBC Autism Series

14. Response to NBC Series “AN OPEN LETTER TO NBC CHAIRMAN BOB WRIGHT... March 7, 2005 Dear Chairman Wright: We are representatives of seven Autism organizations who have watched NBC’s recent intensive coverage of Autism with interest... We would like to see more attention given to issues affecting children and adults at all levels of the Autism Spectrum........ On the higher-functioning end (including Asperger Syndrome) problems may be quite different, but just as frustrating. The remarkable potential of some individuals with Aspergers was highlighted, but that potential represents possibility and not the overall reality of the many difficulties these adults face….”

15. Difficulties in Advocating “Nightmare at Recess.” A disorder that may not be readily observed by adults, but is very observable by peers. What happens at recess, the lunch room, the locker room?

16. Difficulties in Advocating The child is “bad.” Willfully misbehaves Plain Lazy Just seeking attention Manipulative A perfectionist Just immature

17. Difficulties in Advocating You are “Bad.” Too emotional Overprotective You fail to discipline adequately, consistently, properly, etc., etc. Your low expectations cause the child’s behavior You are asking for too much You don’t know that much

18. Difficulties in Advocating HF ASD children's needs are not that “bad” compared to other Spectrum children.

19. Difficulties in Advocating They’re All Alike. All “Autistic” labeled children lumped together in one program.

20. How to Determine What to Advocate For: You are the Best Expert on your child Research Learn the law Recommendations by the Child Study Team Opinions by Independent Experts

21. The Law Free appropriate public education (“FAPE”) in the least restrictive environment (“LRE”). Special education must meet the child’s unique needs and prepare them for employment and independent living.

22. Determining an “Appropriate Education.” The FAPE: Permits the child to benefit from the instruction. Provided at public expense Meets the State’s educational standards Approximates the grade levels used in the State’s regular education Comports with the child’s IEP Provides “some” educational benefit

23. How much “Benefit” is enough? “Any” benefit is not enough IPE is “likely to produce progress” Benefit is “not trivial” IEP is “reasonably calculated to confer a meaningful educational benefit,” IEP offers “significant learning” Benefit must be gauged in relation to the child’s potential.” (Third Circuit) “Appropriate” Child’s Potential

24. What About Grades? IEP must be “reasonably calculated” to enable the child to achieve passing marks and advance from grade to grade. With HF ASD children, the mere ability to achieve passing marks does NOT automatically mean child is receiving FAPE.

25. LRE means children with disabilities should be educated to the “maximum extent appropriate” with children who are not disabled. Disabled children should only be removed from a regular educational setting when education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. “Least Restrictive Environment”

26. Least Restrictive Environment Strong presumption for mainstreaming because of social benefits. The Sixth Circuit (Ohio, Michigan, Kentucky, and Tennessee) Where a separate placement is considered superior, the court will evaluate whether the services that make that placement superior could feasibly be provided in a mainstream setting. If so, then a segregated placement would be inappropriate, if the benefits of mainstreaming are far outweighed by the benefits of the non-segregated setting.

27. Least Restrictive Environment Fifth Circuit (Texas, Mississippi, Louisiana), “Language and behavior models available from nonhandicapped children may be “essential or helpful” to the handicapped child’s development.” Ninth Circuit (California, Alaska, Arizona, Hawaii, Idaho, Montana, Nevada, Oregon, and Washington). Social benefits like language modeling and improved self-esteem may be more important than educational benefits.

28. Least Restrictive Environment Third Circuit (Delaware, New Jersey, and Pennsylvania) and Eleventh Circuit (Alabama, Florida, Georgia): Even if a child could make greater academic progress in a regular classroom, this alone may not warrant excluding the child from that placement. Interaction with nondisabled peers may develop social and communication skills Mainstreaming may work to eliminate the stigma of disability Fundamental right to associate with nondisabled peers

29. Least Restrictive Environment Academic benefits may be more important than social benefits. Second Circuit (Connecticut, New York, Vermont)- The presumption of mainstreaming must be weighed against the importance of providing an appropriate education. Fourth Circuit (Maryland, North Carolina, South Carolina, Virginia, West Virginia) Academic progress may be more important than the social benefits gained from mainstreaming.

30. To Mainstream or Separate The assumptions behind mainstreaming may not be valid for YOUR child with HF ASD. Law was based on premise behind racial integration. ASD disorder may be viewed as significantly different from other disabilities. Stacey G. v. Pasadena Indep. Sch. Dist., 547 F. Supp. 61 (S.D. Tex. 1982) (“Autistic children are resistant to change and experience profound social isolation which is not experienced by retarded children with the same I.Q. This social isolation can interfere with and alter efforts to mainstream the child.”).

31. Those That Favor Mainstreaming Believe A regular education setting will improve the behavior of the disabled child by providing positive role models. Separation creates stigma and low self- esteem. Inclusion will result in increased self-esteem, which leads to greater academic performance.

32. Those That Favor Separation Believe Actual educational achievement should be the overriding factor. Inclusion can lead to failure to model appropriate behavior and language skills, increased social isolation, lower self esteem, and lower academic achievement.

33. Factors to Consider Will your child learn appropriate behavior and language from observation and modeling of typical children in a large setting, or does he/she need a highly structured, small learning environment, offering intensive social skill and behavioral training? Will your child be a victim of ridicule and ostracism among mainstream peers? Will your child have improved or lowered self-esteem among non-disabled peers? Will your child have improved or lowered academic achievement among non- disabled peers? HF ASD children may be socially aware enough to feel failure and isolation when comparing themselves to typical peers in class. If separated, they may develop pride in individuality.

34. “High Functioning ASD” Cases Losing the “autistic” classification Cases finding FAPE was denied. Cases finding FAPE was provided. Other

35. The “Autistic” Classification S.N. on Behalf of K.N. v. Old Bridge (NJ) Township, The Administrative Law Judge upheld the school district’s denial of classifying an Asperger’s child as “autistic.” The ALJ found that the child was high functioning, attempted to engage others, and had well-developed expressive language. The ALJ instead upheld the classification as either “Other Health Impaired” or “Specific Learning Disability,” based on symptoms of ADHD. Eric H. v. Judson Indep. Sch. Dist.,(W.D.Tex.) The court supported removal of the “autism classification” of a child formerly diagnosed with Asperger’s, in part based on findings of excellent grades and minor discipline issues. Instead, the child was classified under “Other” based on findings of ADHD. The court reasoned that the main characteristics of Asperger’s are the (1) qualitative impairment in social interaction, (2) restricted, repetitive and stereotyped patterns of behavior, interests and activities, and (3) clinically significant impairment in social, occupation, or other important areas of functioning. However, it also noted, that “presently there is no standard measure to evaluate whether an individual has Asperger’s Syndrome.”

36. Found FAPE Not Provided (i) Schoenbach v. Dist. Of Columbia, 309 F. Supp. 2d 71 (Dist. D.C. 2004). The IEP for a child with Asperger’s provided for one hour of specialized instruction, thirty minutes of counseling every week, and a full-time aide for the child in a mainstream setting. The parents sought small group instruction in all subject areas, staff knowledgeable about children with severe social disabilities, small structured and supervised activity groups, and a coordinated social, communications and behavior management approach. The due process hearing officer found the IEP appropriate because the child did have higher than average marks, had advanced in grade levels, and was being teased less by her peers. However, the District Court found the IEP inappropriate. The court relied in part on testimony that stated that (1) the child required a small classroom setting (2) that social progress could not occur because the child’s behavior would prevent other children from including her, and (3) that the aide was not sufficiently trained.

37. Found FAPE Not Provided One expert testified, “These children can be misrepresented as appearing to be achieving in a very concrete way, because they have a certain aptitude and ability to be loquacious...But that’s misrepresentative of what they’re actually able to do, specifically related to academics. Executive function disorder is a major impairment that besets Asperger children. So they can’t utilize information that they do know. And the information is usually in splinter skills which really don’t allow them to function well in reality.”

38. Found FAPE Not Provided Neosho R-V School Dist. v. Clark, 315 F.3d 1022 (8th Cir. 2003) An Asperger child was denied FAPE because of the lack of a proper behavior management plan, preventing the child from further mainstreaming and further academic progress. The child had been placed in a self-contained class, with a full time paraprofessional, with mainstreaming in a music class. The special education teacher and paraprofessional attempted to manage his behavior based on a checklist, but lacked a formal plan that included a functional behavior assessment and an appropriate system of consequences and reinforcements. The School District argued that the child’s report cards proved educational success, but the court found that the reports did not indicate at which grade level the child was working at any given time or over which period of time, and that his ability to progress to the next grade level work was only possible with a great deal of help from the paraprofessional. Every time the teacher advanced the child’s work to a fifth grade level, the behavior problems forced the teacher to readjust the work back to a third grade level in order for the child to perform independently.

39. Found FAPE Not Provided The court concluded that the lack of an adequate behavior plan prevented the child from receiving a benefit from his education and from interacting with peers in an acceptable manner.

40. Found FAPE Not Provided D.C. v. Lawrence Township Board of Educ., OAL Docket No. EDS 50-04 (N.J. December 29, 2004). The ALJ found that placing a 15 yr old child with Asperger’s, among other disorders, in a mainstream setting with an aide and a special education teacher appeared “destined to failure,” and awarded the parents’ tuition reimbursement for a unilateral placement in a private school. The ALJ found that the child made “significant progress” in the private placement and rejected the School Board’s assertion that the progress was a result of new medication because there was no medical testimony to support that claim.

41. Found FAPE Was Provided Kings Local Sch. Dist. v. Zelazny, 325 F. 3d 724 (6th Cir. 2003). A ninth-grader diagnosed with Asperger’s, OCD and Tourettes was receiving good grades throughout his IEP. He participated in small group settings in both resource room and mainstream. The parents brought a due process hearing because their child was being “repeatedly victimized and teased at school.” They reported that his behavior at home deteriorated and physical manifestation of disorders had increased. Although the parent complained that life was a “living hell” once the child got home from school, the court found that this was not related to educational issues. The court also reasoned that the child continued to have passing grades, and had slightly less discipline problems than the year before. The court concluded that the IEP constituted a FAPE and reimbursement for private school was unwarranted.

42. Found FAPE Was Provided Adam J. V. Keller Independent Sch. Dist., 328 F. 3d 804 (5th Cir. 2003). A high school student with Asperger’s was considered academically “gifted,” but had serious behavioral problems. The District proposed that the child remain in special education classes, with a full time aide, with the option of enrolling in mainstream classes, and training would be given to parents and teachers. The parents contended the child was being denied a FAPE because he was seriously under challenged academically and had only made incremental progress in his behavior. The court “sympathized” with the parents’ frustration that the child’s courses had not been sufficiently challenging, “given the child’s ability and aptitude.” Nevertheless, the court found the IEP constituted FAPE.

43. Found FAPE Was Provided Lewisville Indep.Dist. v. Charles W., 2003 U.S. App. Lexis 24429 (5th Cir. 2003). The IEP of a seventh grade child with HF PDD-NOS, intellectually in the superior to very superior range, offered mainstream classes with advanced placements in math and science, participation in a social skills communication class (although the child was the only student in the class), and training to the teachers. The child was allowed to leave class one minute early to avoid crowds and bells in hallways, and was allowed to go to the library during lunch to avoid crowds and noise. The parents placed their child in a private placement, where they noted that the child was now making friends his own age and had fewer behavioral incidents.

44. Found FAPE Was Provided The parents contended that the child did not receive academic benefit in his IEP because (1) the child was only receiving passing grades, despite his being considered “gifted” and (2) the mainstream placement was inappropriate for his behavioral difficulties. Nevertheless, the court found the education was appropriate because the child received passing grades (77%- 92%) and there was some behavioral improvement.

45. Found FAPE Was Provided H.W. and J. W. O/B/O A.W. v. Highland Park Bd. of Educ., 2004 U.S. App. Lexis 18625 (3d Cir. 2004). The IEP of a middle school child diagnosed with Asperger’s was offered (a) a self-contained placement of eight students, (b) one-on-one instruction in certain subjects, OT, Speech and PT therapies, (c) a behavior modification plan, (d) mainstreamed classes, as well as lunch and recess, and (e) a teacher with at least two paraprofessionals, familiar with Asperger’s. In a due process hearing, the parent’s expert contended that the proposed placement lacked experience in the Asperger’s disorder and the child would not have any potential friends in the proposed class. The court nevertheless found that the proposed IEP constituted FAPE.

46. Not Just Academics M.C. v. Central Reg’l Sch. Dist., 81 F.3d 389 (3rd Cir. 1996) (education involves emotional, social and physical growth); S.C. v. Bloomfield Bd.of Educ., 2004 WL 2266864 (OAL June 29, 2004) (education encompasses social judgment, relationship to peers and authority, and behavior management); Venus Indep. Sch. Dist v. Daniel S., 2002 US Dist LEXIS 6247 (N.D.Tex 2002) (despite gifted intellectual status, child still entitled to special education services of social skills training, short term individual psychotherapy and behavior management);

47. Related Services Behavioral interventions and support Psychological services (but not psychiatric) Social Skill training Extracurricular activities Speech and Language Occupational Therapy Physical Therapy Transportation Assistive Technologies (Alpha Smart, Voice Recognition Software) School health services Parent counseling and training

48. The Child Study Team Consider CST recommendations Can develop informal short-term agreements (sample contained in hand-out) You need not wait for a child to first fail in a particular placement before removing them.

49. IEP Goals for Elem. School Child Goal: To demonstrate self management skills. Objectives: Reduce incidents of head banging, hitting self, 95% of the time. Reduce incidents of crying and hair pulling, 95% of the time. Demonstrate ability to accept teacher’s “no,” “stop,” or “wait,” without expressing aggression, 80% of the time.

50. Sample IEP Goals- Social Skills Goal: Be able to appropriately interact socially with non-handicapped peers. Objectives: Participate daily with peers in 20 minute structured play situation with adult mediation, without a meltdown or other protests; Demonstrate ability to play a board game with peers according to real rules for 15 minutes; At lunch/recess, demonstrate ability to initiate and respond to play with peer; sustain play in an interactive manner without adult supervision for 15 minutes; Demonstrate ability to play with peers with something other than Pokemon for five minutes;

51. IEP- Emotional Development Goal: Child can self-regulate emotional state to enable learning. Objectives: Demonstrate ability to independently calm self in response to teacher requests; 80% of the time; Reduce requests for teacher assistance when distressed to twice a week. Demonstrate ability to accurately identify feelings when asked, 80% of the time; Demonstrate ability to deal with teasing by asserting self or seeking teacher assistance, 80% of the time; Be able to compare self to others, without demonstrating aggression, 80% of the time.

52. IEP Goals- Study Skills Goal: Achieve motor planning skills required for learning. Objectives: Independently remember to bring home homework 4 /5 days a week; Keep work materials in desk in an organized manner for 3/5 days a week; Independently pack book bag at school and at home.

53. Sample IEP Goals- Language Goal: Achieve skills necessary to engage in conversation with a peer. Objectives: Demonstrate ability to engage in at least three- sentence social conversation appropriate for meeting new children; Be able to engage in" ask and tell” conversation with one child of similar verbal abilities, for five minutes. Be able to describe a movie the child has seen, evidencing proper topic maintenance, sequencing and inclusion of details, for one minute. Be able to talk about a subject other than Pokemon for five minutes.

54. Sample IEP Goals- Occupational Therapy Goal: To demonstrate increased tolerance of ordinary sensory stimuli. Objectives: Reduce evidence of distress when faced with typical auditory stimuli, ex. school fire drill, 80% of the time. Participate in various age appropriate play activities involving strong tactile input, 80% of the time. Learn to touch type so that 80% of school work is typed on AlphaSmart, and 80% is accurate.

55. Experts Courts rely on the opinions of experts. Ideally, the expert should: Observe child over time Visit the school to observe child in school and with peers Review entire school file and child’s records Interview child’s teachers and other service providers Therapists who work with child throughout year, on a regular basis, given greatest credibility.

56. Types of Experts Learning and Educational Specialists Behavioral Specialists Psychiatrists/Neurologists Social Skills (Psychologists/Social Workers) Occupational and Physical Therapists

57. Questions to Ask an Expert Degrees? Institutions? Publications? Work Experience? Private practice vs. professional expert? How much specific experience with this type of child? Any bias for mainstreaming or separation? Worked with both school districts and parents? Known by your District? Known by your attorney? Availability for evaluation/ observation? Willing to testify?

58. Expert Reports Give expert list of specific issues to address. The report should be well reasoned.

59. Retaining Experts What (observe, write, testify) When Obtaining permission Notice of cancellation Termination Fees and costs Sample retainer letter in hand-out

60. Conclusion Emerging media may help educators see HF ASD children as a specialized subgroup. Cases indicate that it remains difficult to prove HF ASD children are not so HF, but more cases are coming out. In the meantime……….

61. They say, You Say He/she was “fine” talking with me. Experts agree that these children tend to be comfortable with adults. Have you seen him/her with peers? He/she can do the work, but just doesn’t want to. Inability to consistently perform is typical of the disorder. Experts do not describe this as “willful.” Children with this disorder have gaps in abilities, and get easily overwhelmed by demands.

62. They say,You say Children in the class do like your child, but your child falsely believes that the children are picking on him/her. Misunderstanding social cues is typical of the disorder, and doesn’t mean that the child is not in real distress. Moreover, teasing may actually be occurring when the educator is not watching.

63. They say, You say Your child needs to go to lunch and recess with the mainstream without an aid. How will he/she ever learn how to cope? You are preventing your child’s growth. The social and sensory demands of a typical public school lunchroom can be overwhelming to the child. Once overwhelmed, the child learns failure, not success. You are seeking to prevent trauma to the child, not his or her success. If the child could “grow” under these circumstances, he/she would not have the disorder. Document the lack of growth/progress in the area at issue. Have an expert come in to observe and document your child’s behavior and your behavior as a parent, if necessary.

64. They say, You say Your child is doing “fine” in this class. But isn’t my child still doing the same work as he/she did last year? What happens if you add harder work? Your child is happy in school. When he/she gets home, they are out of control. Experts say that a child of this type can frequently hold it together during the day to avoid punishment or embarrassment, but that does not mean that he/she is not deeply distressed.

65. Thank you. Any Questions? Comments and questions welcome at lisakrizman@att.net.

66. OUTLINE