Independence Bound: A Mother and her Autistic Son’s Journey to Adulthood
A guide for professionals, families and those persons who associate with adults having Autism
By Jacquelyn Altman Marquette.
Foreword by Nancy Dalrymple.
Harmony House Publishers,
P.O. Box 90, Prospect, Ky. 40059, USA
133 pp. ISBN 1 800 809-9334 $US 19.95
Jackie Marquette, Transition Consultant for families of adults with disabilities, has published Independence Bound, about the transition to adulthood of her son Trent. She shares the insights and strategies that helped her through the fears and crises of the transition process moving into a good new life of quality and independence.
Independence is defined as “the control people with disabilities have over their own lives” and Ed Roberts is quoted that “independence should not be measured by the tasks one performs without assistance but by the quality of one’s life with adequate support” (xix). These are some of the myths that may deter and delay parent and family efforts to support their young adults to live with independence (p.68):
Independent living cannot occur without an agency
Independent living won’t work for my daughter
It will mean changing everything
The state (not parents) should provide and an agency to arrange independent living
Let’s just wait until our son is ready
It’s too expensive and where are we going to get the money
It’s too risky, and I do not trust people
I’ll think about it a few years from now
Somebody would have started it already in our community it is was any good
We don’t have the time to design it
What’s the rush? Let’s not move too fast
My son is too disabled: he has Autism and cannot communicate his needs
It’s just too soon to start independent living
Trent’s transition time coincided with several severe crises in his family, so Jackie’s story offers hope to families seeking ways to hold together against great odds. Families and friends who also want independent living for their adult with a disability can learn from the strategies that built Trent’s self-determination and prepared him for independent living. Very significantly, Jackie shows how important it was for her son to understand the changes, to be reassured that certain people and activities would continue from his old life, and to have a say in all aspects of his new life. Part 4 presents his perceptions and the ways he needs support from others.
Independence Bound also offers professionals and policymakers insights into the supports that individual and families need during the transition to adulthood as well as evidence that adults with Autism can live good independent lives in the community as long as supports are in place.
An outline of the book’s contents helps us see its scope and potential value:
Part 1: Struggles to Solutions, with sections on: family crises; perspectives learned from crises; surviving; how the perspectives; can other families find independent living?; adult agencies; necessary supports; limited financial resources; sweeping changes; transition and person-centred planning; letting go of the old; saying goodbye to the old life; surviving the transitional phase; Trent’s understanding of his new life; the old and the new merge; facing new beginnings; change; change means; change was inevitable; accept change – questions to consider; A checklist: developing a family perspective; how to manage endings.
Part 2: Expect to Grieve, with sections on: mourning the old life; shock; losing trust; denial at a cost – a family falling apart; the lesion – letting go of a clouded vision; adult day care – is it appropriate or just functional; the lesson – moving forward with fear; creating a safe temporary place within; the transition phase; denial and protection; Trent resists the winds of change; Trent surrenders to his grief; Trent’s work experiences; Trent is accepted.
Part 3: Designing an Independent Living Arrangement, with sections on: security, a false sense of security; try believing in this; start today; help people help you; how to ask for what you want; stay motivated; try the exercise; take mini steps toward your goal; Jackie’s personal goal; strategies for coping with the blues; helping Trent stay self-determined; educating the community.
Part 4: Trent’s Message, with sections on: how you can help me; ways you can talk with me; meeting new people; recreation; exercising at the YMCA; going to the library; going to the zoo; gardening; cooking; laundry; how to introduce me to the new environment and to help me to adapt to a new situation; teach me to attend to you when you speak to me; help me to understand my feelings; changing my routine; help me to handle changes in my work environment; waiting is sometimes difficult for me; interventions that help me build my self-determined behavior; waking in the morning; challenging the obsession with my clothes; my TV shows; my vocalizations; getting frustrated; help me understand your intention; speaking harshly or vague; encourage me; a problem solving chart; what I learned to do about anger; angry feeling checklist; ways I learned how to work through my anger; thinking good thoughts; checklist for evaluating my environment; I need your patience; without words.
The author offers many examples, self-evaluation questions and checklists to help other families. For more information, with excerpts and a photo album, visit: http://www.independencebound.com
“I found the book, Independence Bound, fascinating and would indeed recommend it to any person interested in knowing about the coping skills of any individual (with family) who struggles to find his or her independence, in the face of such a wide spectrum disability, as Autism surely is. I believe it can provide guidance, encouragement and hope– for the parents, siblings, friends, support workers, and professionals who maintain a relationship with any adult having Autism. I would also like to say about the author, Jacquelyn Altman Marquette, that her writing style is very refreshing and down to earth. You can assume by her writing that she truly does want to teach others by her example and to give hope to the hopeless. The simplicity of this valuable teaching tool will indeed attract many a interested reader, and I believe, cause change to happen in many lives.”
— Wanda Best for OAARSN