40 Things I Need Most: An Autistic 18 year Young Man

A few years ago, I interviewed and provided a consultation to a family and their 18 year old son. This was one of my case studies. The family was seeking The Capability Approach, my service, to establish appropriate resources, supports for their son, and guidance for transition out of school. The young man has autism and was in the Participatory Level. I define Participatory Level as:

Interdependent – Participatory Level — Often relies upon full direct support along with people engagement in order to enjoy leisure, volunteer, or cope within the setting.

Here are 40 Things I Need Most:  Expressed by parents from an in-depth interview. These 40 were to be used with support caregivers to better understand how to approach and support their son in the home and in the community.

1. I am not deficient, please respect me and see my capabilities.

 2. Focus on what I can do with broad creative supports rather than bemoan what I cannot do.

3. When you speak to me, come close and use a visual (i.e. calendar, written checklist, or photo) to help me understand.

 4. Accept me for who I am today.

 5. Approach me with an open heart and slow your energy down. Take your time with me.

 6. Handle me gently.

 7. Make eye contact with me. I am here. Come find me. Encourage me.

 8. Touch me appropriately and connect with me.

 9. Be patient with me the twentieth time you teach me something as you were the first.

 10. Be aware of your body language and facial expressions, I can feel your energy, positive and open, or indifferent.

 11. Please don’t raise your voice, I am not deaf. I shut down when you are loud and I feel your negative energy.

 12. Trust that I am trying, just not at your skill level or on your schedule.

 13. Do not assess my cognitive ability by how fast I think.

 14. Speak to me directly, not about me to others.

 15. Cheer me on, expect me to progress even if it takes months or years.

 16. Trust that I can always continue to make progress.

 17. Break all actions down into smaller steps of actions, when teaching a skill or task.

 18. Look for obstacles outside of myself preventing me from succeeding on a task or an outing.

19. Celebrate all my little successes. 

20. Be protective of me, but do not stand in the way of my progress.

21. When evaluating my progress as a new support person use a visual with your spoken words to communicate with me. 

22. Don’t assume that when I repeat your last word or phrase, I have understood you. Rather, recognize I am trying to understand you.

23. Understand that I require extensive assistance in bathing. Teach me action steps with visuals and note my progress.

24. Recognize that I am able to eat only a few foods.

25. Provide weekly fun cooking sessions that encourage me to taste new foods.

26. Acknowledge that I need assistance to slow my body down to sleep. Provide me a quiet atmosphere and calm music to relax my mind and my body.

27. Connect my interests as much as possible to new skills I need to practice.

28. Recognize my interests in computers (games, You Tube), animals, watching animal and Disney videos and reading Disney books, horse back riding, bowling and soccer, music videos, outings at the library, mall, enjoying neighborhood walking.

29. Connect my strengths to new settings you want me to experience.

30. Recognize my strengths. I am very agreeable. I can read and write, use the phone, and email with assistance. I have a good understanding of concrete rules and sequences, when presented with a visual photo or checklist. I am cooperative when you make expectations clear. I show enthusiasm and passion toward learning about animals. I adapt well to new people in my life. 

31.  Protect my energy I cannot handle overwhelming sensory. Honor my need for breaks throughout my day.

32. Protect my energy, I can handle only one hour on a community outing.

33. Stimulate my brain when I have energy to learn something new, but know that a small amount of instruction may wear me down.

34. Ask me questions using a visual (i.e., calendar, written checklist or photo) that help me give specific answers.

35. Show me photos or videos of me doing things so I can see my progress and success.

 36. Clarify through a visual what the next level or step is so I know what I am working towards.

37. When planning outings, provide a visual (calendar, checklist, or photo) to facilitate my participation. 

38.  Clarify through a visual what the outing will involve so I know where I am going and what I will do.

39. When evaluating my progress, consider if the structure of the day was appropriate for my best energy level for my participation in the outing.

40. When evaluating my progress, consider if the structure of the day was appropriate for my best energy level for my life skill practice. 

Thank you for reading my blog. If you think it can help others, please share it.

Dr. Jackie Marquette

Consultant, Speaker, & Author


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