The Autism Society Event and Education Recordings Archive

Through the experiences of a clinical social worker who has counseled hundreds of families and one mother’s personal journey the audience will learn about the role of grief for parents of individuals with autism spectrum disorders. The presenters will help the audience understand the effects of grief and loss, factors influencing the grief reaction, the dangers of unresolved grief and strategies for restoring balance, including self-care, education, networking and acceptance. Through the analogy of a roller coaster ride the audience will be educated on the reality of the ongoing ups and downs related to parenting an individual with an Autism Spectrum Disorder (ASD) through the lifespan. In the first half of the presentation the audience will be provided with an understanding of the difference between grief and mourning and the important tasks an individual must navigate in order to come to peace with his or her own grief. The tasks of grief for a parent of an individual with an ASD include a release from the perceived/anticipated relationship with the individual with an ASD, a readjustment to the new reality and the creation of a new relationship with this individual as well as the others around him or her. The presenters will educate on the stages of grief and the types of loss an individual may experience. Some of the types of loss a parent of an individual with an ASD might experience include loss of a dream (what they once dreamed their family would look like), loss of security (what does the future now hold?) as well as a loss of family support, financial security, parenting identity and a peer group. Further education will focus on factors influencing the grief reaction-including the psychological, social and physiological influences. The forms, symptoms, reasons and effects of unresolved grief will also be discussed. The audience will be helped to understand the concepts of forms such as absent, inhibited, delayed, conflicted, chronic, unanticipated and abbreviated grief. Some of the symptoms covered include over activity without a sense of loss, the alteration in relationships with friends and relatives/lasting loss of social relationships, agitated depression, hostility against persons somehow connected with the diagnosis, guilt, self-reproach, panic attacks, increased somatization, diminished participation in religious rituals, over identification with the affected individual, self destructive impulses and radical changes in lifestyle. The audience will be provided with common reasons for unresolved grief with conversation focusing on the difficulty in tolerating the emotional distress of grief and resisting dealing with the necessary tasks and feelings associated with the grief. Additionally, the roll of the normal human desire to maintain the state of the family or the relationship with the effected individual prior to diagnosis is explored as a common reason for unresolved grief. Lastly, in the first half of the presentation, the audience will be presented with the effects of unresolved grief including social problems and mental health problems as an impetus to encourage the individual's focus on their own journey of healing. The second half of the presentation will focus on ways to acknowledge grief through the creation of peer supports and self-care rituals. The cycles of grief and their implications will be reviewed in light of what parents need at each of those stages, and why this will be a life time roller coaster ride (i.e.: fear of/and or reality of continued ASD in the next generation) Also critical to survival is understanding how men and women express grief differently and the implications on marriage. Susan shares personal stories, including her experiences growing up with a parent who had Asperger's Syndrome, parenting a son with Asperger's Syndrome (now 22), and now watching her one-year-old granddaughter like a hawk, for symptoms. Susan explains the difference between sympathy and empathy and uses the latter to help her audience identify their hidden grief and leaves them with tools to express that grief and to heal through healthy mourning. There is nothing more healing to a person who feels that they are absolutely alone in the world than to discover someone else has already been down this path and is willing to stand beside you. Understanding the presence and effects of grief on one's own life is an important component for parents raising a child with any special need. It is important to encourage these parents to focus on their own self care as an avenue for improved relations with their child with an ASD as well as others in their life. Ignoring the important steps of grief and mourning leads to increased stress and fatigue as well as decreased patience and energy. These can be a volatile mixture when left unresolved that we have unfortunately seen reflected in the pages of our newspapers. With growing reports of parents of children with Autism and other special needs resorting to drastic measures of abandonment, abuse and, in extreme cases, suicide and homicide, it is important that this very unique and under appreciated community of parents be made aware of the normalcy of what they are feeling, be educated in the human reaction of what they are experiencing and be given an avenue to seek help and relief from their own grief and loss.

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