How to Build the Road to Independence With Autism
From the moment a student is placed in an educational program, the school should be thinking about how it’s preparing him/her to travel the road to independence.
While there is a wide range of cognitive, motor and communication abilities among students on the autism spectrum, they all are on the road to acquire as much independence as they are able.
We are a culture rich in inter-dependence, so it is acceptable for those with autism to have coaches, mentors, families, and friends to help them on the road.
Here are some questions we suggest teachers and families ask themselves when thinking about transition goals, objectives, classroom lessons, and family support so that they can continually prepare students to reach independence.
1. How can we help students to understand vocabulary words they will need as they travel the road to independence?
2. How can we help them remember personal information such as their names, phone numbers, addresses, birthdates, identification numbers or people to contact in an emergency?
3. How can we teach and motivate students to have effective communication skills?
4. How do we help them develop effective listening skills?
5. How do we teach them to understand gesture language and voice meaning?
6. What mathematical skills can we teach so that they can function at the highest level (calendar, measure, time, weight, money, thermometers?)
7. How can we help them understand their future educational opportunities (trade schools, community classes, colleges?)
8. How do we prepare students to determine their career interests and figure out if those jobs fit their interests, skills, and challenges?
9. How do we prepare them to search for, interview for, apply for and maintain jobs?
10. How do we teach them about salaries, budgets, payroll, and paychecks?
11. If they are readers, how do we teach abbreviations and what they stand for?
12. How will we teach them phone skills and finding phone numbers?
13. How do we teach students to use computers?
14. How will we teach them all about all the other technology devices they will come in contact with (camera, TV, CD, and DVD)?
15. What creative ways can we teach food vocabularies including beverages and seasonings?
16. How will we teach restaurant vocabularies, package label information, and food preparation documents?
17. How will we teach food costs and nutrition?
18. What lessons will be created on reading clothing labels for size, material, and cleaning?
19. What lessons will be developed for learning how to search for places to live and how to complete rental agreements?
20. How will we teach our students about checking and savings accounts, credit, and retirement?
21. Will the school want to create lessons around medical and health issues? What about making doctor appointments?
22. Will the school discuss sexuality, birth control or sexually transmitted diseases?
23. What will the school do about lessons on drug abuse?
24. How will you teach about transportation issues (traffic signs, traffic symbols, vehicles, driving licenses, road maps)?
25. What resources will your school introduce students to (libraries, post offices, recreation facilities, movie theaters, parks, sports centers)?
26. What lessons will your teachers create to teach warning signs and safety-related issues (“police,” explosives,” “poison,” “flammable,” “emergency exit,” “do not enter,” “beware of dog,” etc.)
27. What lessons will teachers develop to teach the meaning of typical community signs such as (Taxi, Bus Stop, Toilet, Open/Closed, Hospital, Ticket Office, Please wait to be seated, Cashier, For Rent, No Refunds, etc.)
28. Will your school teach about voting?
29. How will you teach your students about self-advocacy?
The above questions are just a small representation of the types of transition skills schools should address if serving K-12 on their way to becoming independent adults. While all skills might not be attainable, parts of them may be. It is always important to think that a student is capable and find ways to creatively teach these key skills. Make sure the families are part of the transition, planning and implementing. It is a team responsibility.
In my opinion, it is never too early to be thinking of the techniques, strategies, and activities that you can implement to help your son, daughter, or student to reach independence. I have seen many families reluctant to nurture independence and then when the student is 18 years old, they suddenly become panicked and hope the schools will have the answers.
Whatever negative feelings a parent may have—fear, anxiety, guilt or helplessness—I suggest finding a mentor, coach, counselor or like-minded adult to help deal with those sensitive feelings and get unstuck.
Tools for Building Independence
Here are three planning tools that parents or educational teams can use to begin to see the complexity of preparing a student for a successful adult life.
1. The Circle of Friends
Building connections is said to be essential to foster a sense of belonging. How are we helping our students build connections?
Children are said to develop friendships naturally, but what about those who do not?
This tool can help parents and teachers identify students who need support in building a circle of support. Friends who may listen, give advice or provide support when needed are those in this group.
The tool asks that we draw four concentric circles and label them 1, 2, 3, 4.
The first circle represents a Circle of Intimacy. These are people we cannot live without.
The second circle are a list of good friends and called the Circle of Friendship, and includes those who may not have made the first circle.
The third circle is the Circle of Participation. This is a list of people, organizations, and networks that we are involved with (dance club, choir, sports team, technology club).
The fourth circle is the Circle of Exchange. This is a list of people who provide services to us (doctors, hairdressers, teachers, mechanics, etc.)
Some people can be in more than one circle.
Teachers might do this exercise in the classroom with all students to help them understand how it might feel to not have friends (lonely, confused, rejected, isolated, frustrated, unwanted, depressed, etc.) and then they might discuss what students might do because they feel this way (stay in bed, take drugs, isolate, or try to make friends).
Sometimes other students may then want to help students at risk develop friendships and connections. They become buddies and share how they are making connections, hoping it may help them.
When families of children with special needs do this type of work, they begin to see the need to help develop lists at each circle so their son or daughter may have connections established by the time they reach adulthood.
For example, if a student does not have friends, parents and teachers might identify groups or organizations they could join according to their interests (art, horseback riding, boy scouts, camp, computer clubs, etc.) thus helping them make connections in the Circle of Participation. Teachers might also identify classes within the schools that the student could join to develop his or her interests, thus enhancing group participation. At young ages, teachers can create group projects around lessons to encourage group participation. Some schools develop lunch buddies or work buddies.
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This tool was developed by Jack Pearpoint, John O’Brien and Marsha Forest in 1991. Facilitators are trained at the Marsha Forest Center for Inclusion-Family Community in Toronto.
The steps of PATH are:
1. Create a clear picture or vision of where the student wishes to be
2. Identify goals to focus the next year to keep grounded
3. Identify the people to enroll in the journey
4. Recognize ways to build strengths
5. Chart actions steps to achieve the goals
The PATH asks that a circle of support be created. This is a group of people who agree to meet regularly to help the person with a disability to accomplish certain personal visions or goals. They help them overcome obstacles or open doors too new opportunities.
Parents can invite a variety of people to the PATH meeting. Family members, school staff, church members or neighbors are often asked. The meeting can take three to five hours.
Meetings include the person with the disability. There may be a need to do some planning with the student. Help him or her express ideas for the future and how to agree or disagree with what other members are offering.
There are generally six or more people to encourage varied experiences and perspectives.
Sometimes the family unconsciously puts limitations on the possibilities of the person with challenges. They also may not be aware of many services and options. Assembling a team of varied perspectives can expand their beliefs, attitude, and knowledge.
One or two facilitators can be a good idea. One person may draw people out to offer ideas while the other is recording information.
PATH is a place for brainstorming and sharing creative ideas. It is a safe, respectful, non-judgmental tool.
The meeting may begin with the history of the person, including strengths, interests, dreams, fears and needs. Then move on to identify resources, strategies, and supports, and finally develop action plans to reach goals set by the team.
PATH is recommended for families who want to work together and friends and colleagues who want to make a difference.
Once the PATH team develops a vision with goals and action plans, then the parents can use the information to help work with the IEP and ITP team to build the transition plan.
MAPS is a planning process used by educational teams to help plan for a student’s future. It uses a Person Centered Approach. It’s based on the person’s dreams, interests, needs and fears. The family takes the lead position at these meetings.
MAPS teams usually include the student, parents or guardians, one or more special education teachers, perhaps the assistant, a social worker, people from community-based agencies, any family members that the parents feel should be involved, and advocates.
There is a facilitator and recorder at the meeting. The meeting may take an hour or more.
The facilitator will always ask the student to respond first, then family, and then other members.
All ideas are expressed in a positive manner.
Parents may help the student first talk about their life (where and when they were born, brothers, sisters, school, friends, places visited and things enjoy).
Then the discussion focuses around the dreams (jobs, living, college, school, money, etc.) of both the student and parents. There are no judgments made at this time about dreams.
The student and parents are also asked to talk about fears and anxieties.
Members of this team are then asked to describe the student’s strengths, likes and dislikes, and personal qualities, as well as favorite activities, friends, talents, etc.
Considering the student’s hopes and interests, the team develops a list of activities, opportunities and supports to address them. Finally members begin reviewing all the information and start prioritizing. A list of needs is created to address priorities.
For example, some needs might be to complete a vocational assessment, begin job exploration, increase involvement in community activities, begin exploration of living options, or devlop skills in a specific area.
All ideas and thoughts are listed by priority, and goals and action plans are written for the most important ones.
The facilitators gather up all notes, summarize and send to all members of the team. The team meets yearly to check on progress towards goals.
PACER CENTER: http://www.pacer.org/tatra/resources/personal.asp
MPACT: Transition to Empowered Lifestyles Project Person Centered Planning: http://www.ptimpact.org
Person-Centered Planning Education Site: http://www.ilr.cornell.edu/edi/pcp/
Additional Transition Resources:
Asperger on the Job by Rudy Simone, Future Horizons, www.FHautism.com
Brigance Transition Kills Inventory, Curriculum Associates, www.CurriculumAssociates.com
Developing Talents, Careers for Individuals with Asperger Syndrome and High Functioning Autism by Temple Grandin, AAPC, www.asperger.net
How to Teach Life Skills to Kids with Autism or Asperger’s by Jennifer McIlwee Myers, Future Horizons, www.FHautism.com
Learning a Living. A Guide to Planning Your Career and Finding a Job for People with Learning Disabilities, Attention Deficit Disorder and Dyslexia, by Dale Brown, www.specialneeds.com
Life Skills Activities for Special Children by Darlene Mannix, Jossey-Bass publishers, www.josseybass.com
Taking Care of Myself. A Hygiene, Puberty and Personal Curriculum for Young People with Autism, by Mary Wrobel, Future Horizons Inc. www.FHautism.com
This article was featured in Issue 90 – Practical Ways to Build Skills for a Lifetime