Outgrowing the Child Neurologist: Autism and Transition

1. Outgrowing the Child Neurologist:Autism and Transition Lawrence W. Brown, MD Pediatric Neuropsychiatry Program The Children’s Hospital of Philadelphia

2. 20 years ago the media discovered autism…

3. …10 years ago it was a growing problem…

5. Persistent Core Symptoms of Adults With Autism Communication deficits ranging from non-verbal to more subtle aspects (verbal and non-verbal) Disturbed social interaction ranging from lack of interest to social awkwardness Repetitive and stereotyped behaviors or restricted interests and adherence to routines

6. Persistent Core Symptoms of Adults with Autism Keeping track of time once involved in enjoyable task Lack of emotional control Sensory sensitivities Executive dysfunction Anger management issues, aggression, tantrums Anxiety, depression, self-abusive behaviors Concerns about exploitation Sleep problems

7. Recent Long Term Studies in Autism Few adults achieve “good” outcome Independent living independently Steady job Some sort of friendship with another person in their age group (infrequent sexual relationships and marriage)

8. Recent Long Term Studies in Autism Majority of adults with autism (despite normal or near normal intelligence) continue to be dependent on their families or other support Only consistent childhood predictors of long-term outcome remain language development and IQ IQ > 70 or higher related to better outcomes

9. Long Term Prognosis of Autism Improvement Most studies show improvement in core symptoms – increased communication and social interactions as well as general symptom reduction Deterioration Some studies suggest cognitive or behavioral deterioration in a small portion of adults including catatonia and psychosis

10. Other Challenges in Adults with Autism Difficulties with independent living 1/2 to 3/4 of autistic adults are unable to live independently, regardless of intellectual level 1/2 continue to live with their families 1/3 live in residential settings Only 10% hold full time jobs Only 5% live independently Approximately 1/2 will have a co-morbid psychiatric disorder in adulthood

11. Why don’t more autistic adults live independently? Self-care and hygiene Budgeting/ managing bank account and credit card Housekeeping and cooking skills Safety skills and safety awareness Appropriate dress in the workplace Work-related social skills including understanding “office politics”

12. Living Arrangements for Autistic Adults Independent living residing in own home, working and managing own finances Semi-independent living residing in own home with support for functions such as finances and dealing with agencies Living at home with family various levels of independence in this setting

13. Living Arrangements for Autistic Adults Foster home or skill development home family home with unrelated adults –usually emphasizes independent living skills such as self-care and housekeeping; leisure activities arranged by the home Supervised group living group home staffed by professionals who provide basic needs such as meal preparation, self-care; degree of autonomy depends on level of functioning Institution long-term care for those needing intensive and constant supervision

14. Day Programs for Autistic Adults Day treatment services to increase self-care, communication, mobility, independent living skills, learning and self-direction Day Habilitation – training in above skills along with provision of structured activities and specialized assistance goal is to keep individual involved in non-vocational, community-based activities

15. Day Programs for Autistic Adults Vocational services can include vocational assessments/evaluations, vocational counseling, work and personal adjustment counseling, job skills training, supervised or supported employment, job placement and follow-up Day training and Sheltered Workshops engagement in productive activity for reward (money, verbal praise, access to favored activity)

16. College for Autistic Individuals Good news… Most schools have disability support services But problems persist… Understanding their rights and how to ask for academic accommodations Understanding how to and how much information to disclose to professors Ability to ask questions and understand instructions/rules

17. Key Skills for College Success Organizational and time management skills how to break day into chunks, create schedule, use of an organizer, planning, problem solving Independent living skills laundry, money management, interpersonal problem solving, exercising, cooking, sexual safety

18. Choosing a College 2 or 4 year school? For many, it makes sense to remain in home community to decrease transitions In general, it may be best to start at community college with services for young adults with disabilities Remain at home or live in dorm? Dorms can be loud and chaotic Roommate or not? Roommates are hard to deal with even when you are neurotypical

19. Necessary Skills to Enter the Workplace Basic academic skills Job search and application skills Job performance understanding spoken and unspoken communication getting along with others ability to work in team Career and job development need to be able to update established skills, learn new skills, apply new concepts

20. Transition Planning Importance of early transition planning Need for a well-developed transition plan that prepare for secondary education, employment and maximal independence Understanding of the resources available and how to access them for on-going support Recognition that services for adults with autism (especially for autism with Intellectual Disability) vary from state to state

21. Financial and Supervision Planningfor Adults with Autism Must anticipate problems getting a job with appropriate income/benefits as well as problems holding job even if seemingly appropriate cognition/education Must anticipate need for adult supervision for those also having an intellectual disability

22. Financial and Supervision Planningfor Adults with Autism: Starting Early Soon after receipt of diagnosis, parents should: Begin estate planning Formulate special needs trust Start fund for supervised living Start fund for health/daily living needs Place child’s name on Medicaid Waiver lists and any other possible qualifying state adult funding list Plan for adequate funding when needed Avoid moving to another state (lists do not transfer)

23. Financial and Supervision PlanningResources for Adults with Autism Local autism support groups ARC Local autism center State or local Health Department State Bureau of Developmental Disabilities Autism Speaks website

24. Financial and Supervision Planningfor Adults with Autism: Starting Early Parents should become familiar with current laws and funding opportunities Maintain contacts for updates since opportunities vary from state to state and may change over time Prepare will to include child care plans for all children if something happens to parents when child <18 years old Prepare will to include “childcare” for adult autistic child and update as needed

25. Financial and Supervision Planningfor Adults with Autism: Evolving Needs Must accept that child with intellectual disability will need adult supervision arrange for personal care attendants/respite care workers to support adult child’s care while living with elderly parents identify appropriate, stimulating, safe small group homes identify family members with whom adult child could live and prepare them (along with child as much as possible) for eventual transition

26. Financial and Supervision Planningfor Adults with Autism Before child turns 18 years, parents need to decide if he will be able to make independent financial and medical decisions as an adult If not, parents must identify lawyer to obtain guardianship If higher functioning, may obtain partial guardianship, power of attorney, etc.

27. Medical Care for Autistic Adults Must identify primary care physician who: takes family’s insurance, Medicaid or funding plan treats autistic adult with respect listens to history and investigates each baseline deviance appropriately does not see every health or behavior problem as simply caused by autism

28. Medical Care for Autistic Adults Individuals with autism do not suddenly lose health problems upon becoming adult If patient had epilepsy, GI problems, seizures, catatonia, anxiety, ADHD, aggression, etc. on transition… …must plan for adult subspecialist in problem areas who can advise primary care physician Make certain each adult subspecialist takes patient’s insurance, Medicaid or funding source

29. Neurological Issues in Autistic Adults Likelihood of autistic adult with new onset of seizures is low, but many behaviors may appear epileptic Tics rarely present after puberty and only worsen in 5% of individuals while stable or improved in most Occasional postural changes including catatonia (rigidity with body held body in same position) extreme slowing of movements, loss of muscle tone/increased flexibility

30. Not everyone can become a successful professor, author and lecturer…

31. …but all deserve a useful and productive life

33. Resources www.autismspeaks.org www.aspfi.org. www.danya.com (A Journey Through Autism: A Guide for Transition to Adulthood)