When a child is diagnosed with an Autism Spectrum Disorder, the whole family is severely impacted. Often, the mother becomes the primary caretaker with the daunting task of researching all the therapies available, driving to appointments, cooking the special diet meals, coordinating all the services and service providers, debriefing her husband, taking care of her other children, and in some cases, working outside the home. What does this do to her relationship with her child? What does this do to her relationship with herself?
The usual gratification of reciprocal love, connectivity and responsiveness that sustains and nurtures mothers is often missing for those who have children on the autistic spectrum. The tasks before these mothers are overwhelming. Many mothers are depressed, burned out, resentful, fearful, worried, isolated and running on empty.
The Double Whammy
Most women come to parenthood with dreams of having a “normal” family and taking their place in their social, cultural and family communities with the usual rituals and rites of passage. These unspoken expectations begin earlier and earlier in our achievement-oriented culture; not achieving these milestones creates anxiety and fear.
The period before a child is officially diagnosed is a series of losses culminating in a diagnosis that seals the loss of hope for a “normal family.” That loss can be devastating and there is often no “safe place” to express that loss without fear of being judged.
Shadow feelings of envy, inferiority, and embarrassment can contribute to the feelings of shame and failure. These shadow feelings which occur at gatherings of families and friends are perhaps the most isolating of all and do the most to undermine a Mom’s feelings of self-worth.
For parents of kids on the spectrum it can be a double whammy. Not only do they not get the life sustaining emotional reciprocity from their child, but they must suffer in silence at social gatherings (if they even dare go) and hide these feelings even from themselves.
Identifying the Needs
Both of us have children with special needs. It is through our own personal journeys as mothers of children on the autistic spectrum that we have been able to truly understand the psychological, emotional and spiritual impact this scenario really has on a mother.
Eight years ago, out of our own feelings of isolation, we started a peer support group with three other mothers of children with special needs. This became our “Sanctuary” as we discovered what we needed to maintain our own senses of possibility and aliveness.
Our own discoveries became the seed and inspiration for offering groups that focus on the personal needs of the mothers, rather than on the needs of the children. Our basic premise being if Mom’s needs are truly met, the children will benefit in countless ways. We call our groups Sanctuary – A Circle of Women that Nurtures our Souls.
In the past decade, attachment theory has become a significant model for understanding the emotional needs of children and how our lives as adults reflect our own attachment history. One definition of a secure attachment is a sense of connectivity, responsiveness, and empathy going back and forth. This results in a sense of basic trust, competency and security.
As Moms we strive to create a secure attachment with our children, yet our attempts at this often lead to feelings of frustration and failure. Having a child on the spectrum often triggers the mother’s own attachment wounds. Not getting the reciprocal love back from this child can reignite wounds of love gone awry in one’s own history.
Feeling excluded from the social community of Moms, these feelings are experienced both within community and within oneself. It became our goal to address these attachment needs both intra- and inter-personally.
Intra-Personal Attachment Work
We have found the Moms in our groups to be neglecting their own inner child, and thereby not able to replenish themselves, which caused them to feel irritable, depressed, isolated, and depleted. They were unable to access a “good internal mother.”
We offer experiences which help the Moms get in touch with their inner child and then hold that child with love and compassion. We use creative and imaginative methods to access an internal “good mother” and a connection with their intuition and “inner knowing.”
Moms of “atypical” children often unconsciously experience feelings of shame. It is said that shame grows in the darkness, and as we share these feelings, the shame gets replaced with recognition. A new freedom becomes available; a freedom to tell the truth. By witnessing each other with empathy, compassion, and humor, we learn new ways to be with ourselves and each other. Feelings of self-acceptance and “goodness” replace feelings of shame and inadequacy. We call this intra-personal attachment work, helping create a “secure inner base,” the cornerstone of healthy attachment.
Inter-Personal Attachment Work
Women count on other women for comfort and empathy. We often become attachment figures for each other. Our groups are designed to provide the experience of healthy attachment by being part of a community. Participants are required to attend an initial interview to be sure the group will be a good match for them and that they understand the focus of the group. We meet every other week for two hours and participants are required to make an eight-session commitment after the initial meeting. They have the opportunity to recommit after the initial eight meetings (sixteen weeks).
One way of explaining how these groups function to address attachment issues is by using the Theraplay model of attachment therapy. This model is based on four elements: Engagement, Nurture, Challenge and Structure.
The group offers a high level of engagement. Each meeting consists of activities such as writing exercises, collage work, poetry and other creative experiences that engage thinking, feeling, intuitive and sensory processes. In addition to participating in these activities, the sharing of the experiences also engages a sense of “optimum arousal and compassion,” two important elements in this model. We’ve added a private blog for the group and they stay empathically connected between sessions this way.
A feminine, non-hierarchical model of compassion, safety and understanding are the core of our groups. We create a container for telling our truths, for grieving, for laughing, for crying, and for comforting.
We challenge the Moms to see things from new perspectives. Many of our activities deal with opposites: worst and best, strengths and weaknesses, inner child and good mother, childhood traumas and loving memories. We are creating new stories and new ways to be present in our lives.
We operate on a tight timeline with no cross-talk. We start and end on time, and sharing is within a timed framework (for example, two minutes each and we use a timer with a lovely melody to signal that her time is up). This structure provides safety and the knowledge that everyone will have her turn.
Creativity as Soulwork
The creative impulse is a life sustaining impulse. Moms of children with special needs rarely have the time to express their creativity. In our groups we do a lot of creative work as a way to bridge our inner and outer worlds and to give meaning to our inner experience. We call this Soulwork.
What We Are Finding
Something powerful is happening. The women are reporting more joy in their lives, more acceptance of their children, more compassion for themselves, a growing feeling of belonging, and less isolation. A feeling of renewal, replenishment, and inner strength is emerging in these women and it is having an impact on the quality of life for them and their families.
It appears that the group itself is becoming a community and a source for healing attachment. Each woman is being deeply listened to and understood by every other Mom in the group. Within the safety of the group and through the creative process, new strengths and resources are being discovered.
Questions for the Future
Our groups are in their infancy stage. We are receiving much positive feedback and numerous requests from women who want to participate. We want to create ways to measure the impact of these groups not only on the women, but on their families and particularly on their children. We need to see if we can create a model that can be replicated by other therapists in other communities.
We look forward to growing this model and hope to be able to address the needs of the many incredible Moms who are suffering and living in isolation.
Judy Fiermonte, MFT has been in practice for over 30 years specializing in work with children and their families. She is the proud mother of a 22-year-old who was diagnosed with Asperger’s Syndrome at age 9 and is transgender male to female. Judy can be contacted by phone at (707) 528-1097.
Cynthia Hymowitz, MFT in addition to her private practice focusing on healing from childhood trauma, has been leading groups on Creativity and Consciousness since the mid-eighties. She is the mother of a 15-year-old with high functioning autism who is her greatest teacher. Cynthia can be contacted by phone at (707) 575-9539.
Booth, P.B & Jernberg, A.M. (2010) Theraplay: Helping Parents and Children Build Better Relationships Through Attachment Based Play, Third Edition San Francisco: Josey-Bass
Hartzell, M & Siegel, D, (2003) Parenting From The Inside Out, New York:Tarcher. Hughes, D.A.(2009) Attachment -Focused Parenting, New York: Norton Professional Books.
Woodman, M. (1993) Conscious Femininity, Toronto, Canada:Inner City Books.