1. Jack Hartley and His Mom, Mary IM4Q Conference July 2018
My Normal: Creating a Plan To Support Autistic Independent Thought & Interests
Jack Hartley and His Mom, Mary
IM4Q Conference July 2018

2. This applies to everyone.
“The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need, they’ll make their own boxes.” -Temple Grandin
[Jack]
We are all different. Most of us are happiest when we get to do the things that we love.

3. Jack Hartley
Rising HS Senior living in Pittsburgh High skills in technology and focus on specific tasks Interested in jobs and study: philosophy, coding, cultural anthropology, and a lot more Self-advocates for accommodations to remain successful Independent user of regular route public transportation Community Volunteer Advocate Big Brother
[Jack]

4. Jack (and Gracie’s) Mom; Married to Bob, Living in Pittsburgh Consultant, 446 Bridges #IWantToWork & 21 and Able (Transition to Adulthood), United Way Act 26 Employment First Legislation Career Transition Project Housing Initiatives—Housing Connector Access to Healthcare Western Pennsylvania Disability History & Action Consortium Advocacy, Autism Connection of Pennsylvania
Mary Hartley
[Mary]

5. We’re learning too.
[Jack] I learn about myself, and my mom learns too.

6. We’ve all learned a lot together.
[Jack]

7. CDC
Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less. A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder.
[Mary]

8. Columbia University Identifies differences in synapse ‘pruning’ in brain
[Mary]

9. Real Biology. That autistic adult is probably NOT ignoring you. Be kind. Slow down. Wait. Listen.
NEW YORK, NY (August 21, 2014) — Children and adolescents with autism have a surplus of synapses in the brain, and this excess is due to a slowdown in a normal brain “pruning” process during development, according to a study by neuroscientists at Columbia University Medical Center (CUMC). Because synapses are the points where neurons connect and communicate with each other, the excessive synapses may have profound effects on how the brain functions. The study was published in the August 21 online issue of the journal Neuron. This journal article talks about ‘fixing’ autism biologically, as well. Debate continues.
[Mary]

10. Beware of Defining Autistic Adults by Functioning Levels
High Functioning-Doesn’t mean I don’t need any help. Low Functioning-Doesn’t mean I need your help for everything.
[Jack] read….

11. Is the environment overwhelming? Sound, too many people speaking.
Space (listen) to communicate.
Preferred methods of communication must be supported.
Mary will read, ask Jack
This Photo by Unknown Author is licensed under CC BY-NC-SA

12. My Stimming Story
What is Stimming? What does it feel like? Different kinds of stims: Rocking, flapping, flicking, spinning, hand motions… What my stimming is like now. Both at Home and School How it has changed over the years.
[Jack]

13. What we Know as Family and as Advocates
People on the spectrum are like ALL people. Unique. ALL have wants, wishes, desires. ALL have abilities and challenges. My normal. NOT your normal.
[Mary]

14. Making Recommendations
Work from a model of success. What is working already?
How does the person best communicate wants and wishes?
Is the person able to advocate on their own behalf (even by saying no).
Communication is critical.

15. Schedules and Routines  Interests Drive the Day
Routine is often primary 1
After graduation, often no services = no schedule 2
Person Creates their Own Schedule
Don’t force in-ease in. Interests. 3
[Mary]

16. People on the Spectrum Can Often Get There, They Might Just Need A Longer Runway (or accommodations)
[Mary]

17. If THAT didn’t happen—it’s never too late to start.
[Mary]

18. Actually, for people on the spectrum, there often is joy in repetition…
[Mary] ask Jack…is there joy in repetition? Do you like to do the same things (routine)

19. Interests as the Key Driver
While all people on the spectrum can’t express what they want to ‘be’ in words. Actions are a huge indicator of interests.
Start with interest.
Exposure to similar interests.
Expanding on interests.
Familiar and comfortable environments.
If the person is willing to try, ‘grow up’ interests.
[Mary}

20. A Few of Jack’s Interests Over Time
Thomas the Tank Engine
Buzz Light Year
Sonic
Yugi-Oh
Today: Japanese Culture, Economics, Power Structure
[Jack] These are some of the things I have liked over time…what I like now is…

21. Risk  Reward Risk Taking & Trying New Things
New Experiences are Important to Jack = Break up Routine with Enjoyable Ones First
Open to New Things
Rigidity and Getting Stuck
Force the Issue? Is it Hurting Him Not To Do It?
Because he/she had one incident—all access to the internet, buses, stores, work world…is now forbidden…WHOA!
This Photo by Unknown Author is licensed under CC BY-ND
[Mary]
Risk  Reward

22. Travel Training Natural and Professional Supports
Stimming, Jumping, Humming Continuous
Walking down the street holding on
Gradually: walking in front, then behind, a block away, go find something you want in the grocery store; take the bus with the family to movies, etc.
THEN CAME EVEN HIGHER EXPECTATIONS-Bob’s DREAM
1st mobile therapist then friend, independence in neighborhood
Fast Forward: Travel Training, Taking the bus & train independently
BUS DRIVER, Bus riders (who could also be neighbors), continuing natural support
Driving?
[Mary, asking Jack questions]
Travel Training Natural and Professional Supports

23. Find My Phone App Examples iPhone/Android
[Jack] this is an app that helps my mom find me, but I can also find her
Find My Phone App Examples iPhone/Android

24. My Plan for the immediate future includes employment
[Jack]

25. In addition to traditional colleges/training A lot of new opportunities…
Dream Partnership in Pennsylvania
Think College Nationwide
[Mary]

26. Chores lead to jobs Responsibilities School, Work, Home Community Commitments Organization/Calendar Keeping Independent Technology Volunteer Jobs in Your Neighborhood Jobs Paying Real Money Financial Responsibility: REAL Money, Plastic, Accounts Staying with Family/Friends Meal Preparation/Cooking Taking Buses (technology) Walking Independently/Riding a Bike Fun Activities/Independent Friendships & Relationships
[Mary]

27. Job Success= Interests Start There & Keep Trying
A 2014 study found that the more independence autistic adults had at work, the more improvement they showed over the next five years in social interactions, communication skills, repetitive behaviors, self-harm, socially offensive behavior and activities such as housekeeping and making meals. Those results shouldn’t be surprising, says Taylor, a co-author of the study. “We see that in typically developing people all the time. If you’re in a job that’s a good fit for you or where the expectations are high, oftentimes you rise to that. Why wouldn’t we expect the same thing for somebody with autism?” The findings, she says, suggest that “we don’t have to go in and ‘fix’ everything for somebody with autism before we put them in some sort of job setting.” -Washington Post Article about Drexel Study 2015
Job Success= Interests Start There & Keep Trying
[Mary] Job success is tied directly to interests…great quote here.

28. Jobs/Training for me? Software Hardware University Hospital Laboratory
Even if it isn’t the exact job, but being with your ‘tribe’, common interests, common lifestyle and socialization.
Possible college classes, training for me to find jobs. I want to be around smart people who get what I like to talk about.

29. Realistic Expectations about Work
There are only so many museum docent jobs. Like others, Mary thought she would be ‘an actress’… PA Job Gateway (also look at Monster, etc.) Interest Inventories & Skill Evaluation Job searches: What is out there? What does it pay? What training, certificate, degree, experience do I need?
[Mary]

30. Friendship Love & Sex Relationships
Education
Understanding
Respect
Talk about natural support!
[Mary]

31. “Mom, You need to become independent.”

32. I’m moving out.
Even more radical—Plan the move out date. Work toward the goal.
If you are staying put, does the community where you live now offer real freedom: movement, transportation, for everyone?
Can service providers access your home if they take a bus?
Is it time to move?
{Mary]

33. Moving out, especially roommate(s) or friend(s), staff in building &neighbors, neighborhood resources can be a HUGE natural support (and social).
[Mary ask] Jack, are you going to move out someday?
This Photo by Unknown Author is licensed under CC BY-SA

34. Community Participation (Traditional Ideas) Try new things and try again at different ages
Community Center- Like the YMCA or JCC
Faith Based Organizations
Community Civic Organizations
Art, Music, Dance
Athletics/Sports Teams
Others—what is happening where you live
Mary

35. Community Inclusion (Contemporary Ideas)
Meet Up
Social Media-
YouTube Channel
Other contemporary/non traditional ways people interact?
Families often restrict access, concerning safety, sexuality. How can the internet be appropriate and an opportunity for engagement? What still needs to be taught to increase independence and safety?
*Remember the runway.
mary

36. Give me liberty.
Jack

37. My Vision For the Future so far…
Jack
This Photo by Unknown Author is licensed under CC BY-SA
This Photo by Unknown Author is licensed under CC BY-SA

38. Talk about natural supports—and social life!
“In general I think that 99.5% of students with disabilities can work in some capacity.” Michael Stoehr
Talk about natural supports—and social life!
Mary

39. Mary

40. As adults, do we always get the job of our dreams? Avocation/Vocation
What does your day look like?
How many leisure activities do you participate in during the week and weekend?
Do you take any classes for credit or advanced learning?
How many hours do you work?
Time for friends?
Vacations
Typical Adult Day—It is typical to be of service to someone else throughout the working age adult day.
Mary…

41. My Employment Journey So Far…
School focus on Technology
Laptop
Software and Programming Classes
High Interest—Knows a lot about platforms (Gaming), software and programming.
OVRCoaching Support through Evolve (not the first choices offered)
MModal, Dynavox and Bender Consulting
Fall Internship at School
My Employment Journey So Far…
Jack

42. Forced Socialization. Structure. Meaning. Empowerment. Independence.
Instead--How about a job?
Structure.
Meaning.
Empowerment.
Independence.
Participation.
Belonging.
MONEY. Things I want. Now and in the Future.
Forced Socialization.
Mary

43. Video…

44. Thank you.
Jack & Mary

45. Additional Attributions: Images From Internet This work is licensed under a Creative Commons Attribution-ShareAlike 3.0 unsupported License.
Amazing Things Happen Video cdgkI
actions/yellow-sign-with-start-on-it/ yellow sign with start on it
shtiki.com “There is joy in repetition” cartoon.
The hidden benefits of happy coworkers, Entrepreneur, infographic by globoforce
Leaf throughout g

46. Attributions
people-means?utm_source=facebook.com&utm_medium=cpc&utm_campaign=link_like_122017
empathy/
support-when-they-need-it-most/2015/03/23/cd082c64-b396-11e4-854b- a38d13486ba1_story.html?noredirect=on&utm_term=.dc51bac5a535
0MDoyMjIzMjIwODg1MTcwODQ/
?utm_source=facebook&utm_medium=social&utm_campaign=mobilesharebutton2