A Mom’s Loving Advice on Transitioning an ASD Child to Adulthood
Mother’s Day, a universal tradition of marking the special relationship between a Mother and her children, has a poignancy which only those of us mothering our autistic son or daughter can appreciate. We Moms belong to a special community. It is a community of Mothers whose lives revolve around raising our autistic child to adulthood while sometimes defying the odds that we will succeed as we escort our special child through the stages of development, from baby to toddler, on to adolescence and finally, into adulthood.
We, Mothers, belong to a special club whose only membership requirement is that we work so that our children, as different as snowflakes falling from the sky, receive the respect and acceptance we would expect from any civil society. We struggle together to insist on fair treatment and equal citizens’ rights, to call for acknowledgment that while our autistic son or daughter may sing to a different key, they are all our children created in the same image and deserving our unconditional love.
As Mothers of autism spectrum children, we are part of a community which negotiates each day with systems, institutions and sometimes, unforgiving, hostile environments, to ensure that a safe day is ahead for our sons and daughters. Many of us have not chosen to be “Tiger Moms,” but if we are forced to raise our voices in support of our autistic children who sometimes lack the power of the word, we speak on their behalf, insisting that our message be heard and understood. We struggle as most Moms do with balancing our professional lives, career choices, and family demands with the emotional and physical needs of our autistic son or daughter.
There are very special places in our world for Mothers of children on the autistic spectrum. It may be a quiet and isolated spot where we can safely and silently cry out when our child has been hurt. Or it may be a podium from which we deliver an impassioned plea for understanding who are kids are and why their differences must not be perceived as threatening or coercive.
Perhaps it is a place of retreat and meditation as we continuously search for answers to questions where few exist. Our very special place is personal and private. We open our hearts and reveal our vulnerabilities when we trust that the responses will be positive, hopeful and encouraging. And our message is delivered in a unified voice. We not only acknowledge and accept our autistic child but we also appreciate who that child is and who that child will become.
As Moms of kids on the spectrum, we are familiar with the statistics which tell another story, a more compelling narrative about what lies ahead for our children. We accept that nearly 50,000 children each year with autism face an adult world sadly unprepared to deal with their ever-growing needs. Systems and institutions tasked with grappling with what today is referred to as a “tsunami” are simply unprepared or unwilling to set aside the resources to ensure a safe and smooth transition from childhood to adulthood.
But, as members of our Mothers of Autistic Children Club, we are not afraid. We deal with the future of our children with the same steadfastness of spirit and commitment as we did when lo, those many years ago, the diagnosis of autism spectrum disorder was a direct path leading to institutionalization, dehumanization, and condemnation to a life bereft of love and family.
Our challenge is to look ahead to the future when we are no longer around to offer the support, guidance and love our children were nurtured on. As our little children developed from childhood to adolescence and finally into adulthood, we were often so overwhelmed with the obstacles we faced on almost a daily basis; we lacked the vision and energy even to consider what lies ahead for our aging child. But, as strong and caring Mothers, we certainly must think about the future of our child. Who will look after our child? Who will love our child? What must we do to ensure that the life of our adult child will be comfortable and secure?
I would suggest that we consider practical approaches and develop effective tools which can be in place when we are no longer around to safeguard the interest and well-being of our autistic adult son or daughter. They fall under the categories of housing, employment, legal considerations, medical issues, leisure and social opportunities.
The choice of housing for our autistic adult child is critical as this is the environment in which they will interact with the community, engage in activities and find solace, safety, and security. Fortunately, due to an increased awareness of the housing needs of this population, there are more choices though some are still at an early and experimental stage. Intentional housing units exist, for example, when a group is defined as having a specific need or intent requiring special considerations including location, support, and professional supervision and involvement.
Other housing choices include semi-independent apartments which may include supervision on a daily or weekly basis, full-service units and managed care facilities. In terms of selecting the most appropriate housing, with the best of intentions, for example, the United Nations declared that reasonable, independent housing choices must be available to all persons with disabilities. Of course, we understand that interpretation and enforcement are not universally upheld.
Ultimately, choosing the most suitable housing arrangement for our adult child is often a result of considering whether to segregate and exclude them from their immediate environment or to include and invite them to be members at large of a neighborhood or community setting. Whichever choice is made, indeed, it should be taken long before we as parents are no longer able to be involved in making this important decision.
We understand how complicated it is to secure full time, productive and meaningful employment for our autistic adult child. Statistics are not promising, but we know that with dedication and perseverance we can identify a niche in the world of employment which matches the skills and talents of our own children. There are more initiatives today being undertaken by multinationals, industries and hi-tech firms which make an effort to reach out to our autistic community, promising good wages, security and a job which matches the abilities of the employable autistic adult. Moms of kids with autism do what they do best—they search out possibilities, confront potential employers, and challenge the system to integrate their child into their work environment.
And with good training and preparation as well as awareness about the strengths and skill sets associated with the autistic spectrum adult population, there are real job opportunities waiting to be filled by our own. Mothers do not shy away from these real challenges of finding reasonable work for their adult children. They confront them with the same determination and passion required of them as their little ones faced untold obstacles during their years growing up.
Click here to find out more
Our children belong to a family unit which oftentimes includes adult siblings who may be struggling with the challenges of raising their own families while thinking ahead to their responsibilities as a brother or sister to an autistic family member. We may have become quite savvy at identifying local and national support systems willing and able to lend legal and financial support. Supplemental Security Income (SSI) for example is one source of ongoing financial assistance, once an autism spectrum diagnosis is confirmed. The terms including financial aid, service delivery, and guaranteed ongoing support may vary according to budgets and other considerations, so it is absolutely critical to be sure all details of this support are confirmed and ensured for the lifetime of our child.
Other instruments such as custodianships, wills and bequests, trusts, health insurance and long-term medical assistance are several of many other important legal and financial considerations worth examining perhaps with the assistance of a lawyer well trained in handling issues associated with a special needs population. Turning to our adult children for their input, including their spouses, sends an important message to them about how we as Mothers envision their future role once we are no longer around to give guidance.
Perhaps frightening and maybe even overwhelming to them at first, as they rightly focus and prioritize doing the best parenting job with their own families, it seems reasonable to expect them to at least minimally be informed about what we have done to relieve them of some financial and legal burdens. Giving them practical information such as names of lawyers and contacts and discussing details of arrangements we have set up well in advance may give them a greater sense of security and confidence in doing what is right for their sibling.
For reasons that are still under investigation, autism spectrum adults are at higher risk for health problems than the general population. A high incidence of Parkinson’s disease, for example, has been noted as well as higher rates of diabetes, heart disease, depression and acute bouts of anxiety. How we prepare to deal with the physical and mental challenges our adult children face will depend on our willingness and readiness to accept these as inevitable and simply a part of what do we must oversee a smooth transition into an appropriate and effective health care system.
Leisure and Social Activities
In an informative article written in May 2016, Dr. Peter Vermeulen, an autistic consultant in Belgium, discusses what it means to promote happiness in the adult autistic population. He looks at areas such as friendships, support systems, leisure time activities, emotional well-being, and what defines happiness according to the autistic adult. What are the sources of meaning and pride for our adult child? What can and must we do to promote a good sense of self and a perception of success and fulfillment? The answer, I believe, lies within the character of our child. And as we take the time to honor and salute our child as we mark Mother’s Day, we should also remember that our children are who they are or as my son so often says: I Am Me.
Happy Mothers Day!
When living in the United States, Marlene was the co-coordinator of the English for Specific Purposes and English as a Second Language adult training programs for refugees and immigrants in Montgomery County Public Schools in Maryland. Her program was nominated for special recognition by the White House for its work in adult literacy. An advocate for persons with disabilities, Marlene encouraged people in school systems in the US and in Israel to develop programs for students who might not otherwise be able to function in a typical classroom. She counseled and guided teachers, administrators and parents to recognize the needs of the disabled population.
Today, Marlene works closely with service care providers to maximize the potential of the autistic population in a work setting. In addition, she counsels and advises parents about resources, opportunities, and the legal aspects of raising an autistic child to adulthood.
Marlene and her family currently reside in Israel and sponsor, host, and organize conferences, social events, and gatherings in order to promote awareness about the needs of the autistic adult.
I Am Me is a courageous story offered as a gift of hope, inspiration, and love to anyone whose life is affected by an autism spectrum diagnosis—a candid and moving personal narrative about raising a son with the devastating diagnosis. One out of 68 children today is diagnosed with autism. One of those happens to be Marlene Ringler’s son. Yesterday’s autistic child is today’s autistic adult. As mothers, women worry about just what will happen to their child when they are no longer around to provide guidance and support.
Who will look after him? Who will care? Who will love my son?
Marlene Ringler directly addresses those very human questions as she pays special attention to research findings and current investigations into the spectrum disorder. Her journey provides a firsthand look at the highs and lows of raising a son with this diagnosis, leading towards a greater understanding of how recognition of an autistic diagnosis can be viewed as part of our human condition. I Am Me is a straightforward, honest, and touching story of how a family copes when one member is on the spectrum. It is a journey told through the prism of a mother who offers hope, belief, and conviction that the life of a child with autism can and should be fulfilling and rewarding.
This article was featured in Issue 75 – Helping Your Child with Autism Thrive