Making a Difference for Those with Autism

1. Making a Difference for Those with Autism Alicia Koger, BCBA, LPC, NCC Laura Maines, J.D.

2. Objectives • To understand characteristics of Autism • To be more aware of the challenges faced by those with autism and their families • To understand the scope of need for autism-specific services and programs in PA • To be better able to assist in meeting the needs of a rapidly increasing population of children and adults with ASD

3. Autism Spectrum Disorder • A developmental disability marked by impairments in social interaction, communication, and restricted, repetitive, and stereotyped patterns of behavior • Includes Autism, Asperger’s, and PDD-NOS

4. Pervasive Developmental Disability 5 Subtypes • Autistic Disorder • Asperger’s Syndrome • Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) • Rett’s Disorder • Childhood Disintegrative Disorder

5. Autistic Disorder (AD) • Impaired social interaction   • Impaired communication • Restricted, repetitive and stereotyped patterns of behavior, interests, and activities

6. Asperger’s Syndrome (AS) • Milder symptoms of autistic disorder • Might have social challenges and unusual behaviors and interests • Typically do not have problems with language or intellectual disability

7. PDD-NOS • Meets some, but not all, of the criteria for autistic disorder or Asperger syndrome

8. Rett’s Disorder • Normal development until 5 months • Deceleration of head growth • Loss of purposeful hand skills, social engagement, language development • Poorly coordinated gait

9. Childhood Disintegrative Disorder • Normal development for first 2 years • Loss of acquired skills (before age 10) in language, social skills, adaptive behavior, bowel/bladder control, play, motor skills 

10. Definite etiology is unknown • Biological origin • Genetic component • Environmental influence • No evidence of a relationship between vaccinations and autism

11. Impairments in ASD • Communication and Language • Intellectual Functioning • Social skills • Sensory experiences • Behavior

12. Communication and Language Deficits • Delay or lack of spoken language • Literal processing of verbal information • Impressive vocabulary • Difficulty with conversation • Repetitive use of language (echolalia) • Lack of make-believe play or social imitative play

13. Intellectual Functioning • Intellectual disability or intellectually gifted • Focus on a minute feature of an object or a person rather than the whole • Obsessive attention to a specific object or activity • Strong aptitude for rote memory of certain things

14. Ritualistic and Unusual Behavior Patterns • Stereotypy - pattern of persistent and repetitive behaviors • Self–stimulatory behaviors • Need to complete things in a very particular way

15. Sensory issues • Hyper- or hypo-sensitive • World may seem chaotic • Manipulating their own environments may help to bring order to experiences • New activities may be scary or overwhelming

16. Insistence on Sameness and Perseveration • Obsessive need for sameness or routines • Preoccupation with certain topics • Compulsive adherence to nonfunctional routines or rituals • Persistent preoccupation with parts of objects

17. Impaired Social Relationships • Difficulty perceiving emotional state of others • Lack of spontaneity in sharing enjoyment with others • Impairment in use of nonverbals • Attend almost exclusively to words being spoken • Take words very literally • Receive only part of the message or receive a completely erroneous message

18. Perspective taking and empathy • Studies suggest that children with autism are less able than typically developing peers to label others’ emotions, take the perspective of others, and respond to others with empathy.

19. Challenges for those with ASD • People will initiate social interaction more frequently with individuals who are able to take the perspective of and demonstrate empathy toward others.

20. Deficits in Executive functioning • Planning and problem-solving • Helps us to learn new information, remember information, and use the information to solve problems.

21. Severe Problem Behavior • Property destruction • Aggression • Self-injury • Sleep problems • Eating problems

22. Common co-occurring conditions in ASD • Emotional & behavior problems • ADHD • Anxiety • Depression • Gastrointestinal problems • Sensory issues • Seizures/epilepsy • Intellectual disability • Allergies

23. Prevalence of ASD • Estimated average 1 in 110 children • More common in boys than girls (4:1)

25. Why the increase? • Greater awareness • Changes in federal and state policy • Younger age of diagnosis • Broadening of diagnostic criteria • More widespread screening and better assessment • Greater availability of services for diagnostic category • An actual increase in the true incidence of ASD

26. Prevalence in PA (2005) • Close to 20,000 people with ASD • Predicted to be 25,000 by 2010 (without mortality or new diagnosis) • 93% were under age 21

29. Adults with autism • Lack of empirical data • Lack of data in ASD & residential or employment • Direct care staff average turnover rate for adults with ASD is 50%

30. Legal system • Juveniles and young adults with ASD are being arrested and prosecuted • Often related to sexual harm or stalking • Many do not know/understand intricacies of relationships, personal space/boundaries

31. Risk of sexual abuse • Difficulty in communicating, perspective taking, and self-advocacy • Not able to adequately defend themselves, either to explain their actions or to deny involvement in such actions. 

32. Abuse & Developmental Disabilities • Children with DD are abused 2-3 times more than non-disabled kids • 68-80% of DD females are sexually molested or raped by age 18 • 30-70%of DD males are molested or raped by age 18 • 49% of DD individuals who are abused will experience 10 or more abusive incidents in their lives • 90% of people with DD who are abused know their abuser

33. Other risks/impacts • 25% of PA adults with ASD have unwanted police involvement • 7% of PA kids with ASD related behaviors have had detention • Only 30% of PA parents surveyed and 50% of their spouses had no job impact due to ASD

34. Employment & housing • Individuals with ASD have minimal funding available to them after age 21 • 74% of adults with ASD live at home • 11% live in group homes • 7% are on their own – with or without support • Results in poor vocational training opportunities, few housing options, low quality of life

35. Employment • 75% say they experience discrimination • 15% say it’s due to underutilization of their skills • 9% of adults with ASD work full time • 26% work part time • 80% say it’s hard to find work

36. Educational support • 39% report needing social supports • 29% report needing tutors • 31% report needing academic counseling • 50-60% of adults with ASD are in a student group or peer mentor group, but only 50% of those result in friendship.

37. Results of PA census • Need to plan for thousands of children with autism who will transition into adulthood in the near future • Need to plan for housing needs • Need cross systems coordination • Need consistent data collection for accurate census • Need to increase capacity of professionals to evaluate, diagnose, educate and provide services

38. Act 62 • Requires commercial insurance to cover cost of ASD services up to $36,000 • TPL applies (Third Party Liability) – CMS regulations related to MA being payer of last resort • Requires DPW to license Behavior Specialist Consultants (BSCs) • Many children are not affected • Insurers still determine “medical necessity”

39. Act 62 Impact on families • Interruptions of care if: • Current provider does not contract with family’s commercial insurance company • Clinician working with the family does not have the credentials required by the commercial insurer • Denials from commercial insurer when plan does not have autism benefit

40. Act 62 • Providers are experiencing increased complexity of process as a result of: • Concurrent authorizations • Varying commercial insurer’s requirements for • Medical Necessity • Contract Negotiations • Authorizations • Billing Processes • Increased demand on credentialed clinicians for supervision or provision of care

41. Parity? • Mental health benefits must be equal to/no less than comparable physical health benefits • Example: go to OP physical health PCP as much as you need based on however you feel that year, then you must do the same for Mental Health • Pennsylvania has not determined whether it affects Act 62. The impact would be the removal of the 36,000 limit of payment for services under the act.

42. Summary • PA providers need to increase their capacity to serve individuals with ASD • Need to collaborate with others

43. References • Centers for Disease Control and Prevention (2009). • Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV). (1994) American Psychiatric Association • Gerhardt, P. (2010). ABA and Older Learners with Autism: Evidence-based applications to promote competence and quality of life. PEP conference at University of California. • Mendell, D. (2010). Statewide Needs Assessment. ASERT. • National Research Council (2001). Educating Children with Autism. National Academies Press • Pennsylvania Autism Census Report (2009). DPW: Bureau of Autism Services.

44. Contact info Alicia Koger akoger@wesleyspectrum.org 724-443-4888 Laura Maines lmaines@wesleyspectrum.org 412-342-2300

45. Wesley Spectrum Autism Services Intake Department: 724-443-4888