The Affects of Autism in Families and Partner Relationships by lindayy


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									     The Affects of Autism in
          Families and Partner Relationships
                                                     Chantal Sicile-Kira

                                                                                   au t i s m — i t’s a fa m i ly t h i n g
                                                                           It has been estimated that the divorce rate is in the 80% range in          Keeping any marriage healthy takes time, and all too often, time gets
                                                                           families with children who have an autism spectrum disorder (ASD)           swallowed up by the autistic child’s needs. Many children with an
                                                                           (Bolman, 2006). Despite high rates of marital conflict, many couples        ASD have difficulty sleeping, meaning that at least one of the parents
                                                                           do not reach out for couples therapy. Lack of respite is a major            is sleep deprived. Usually, a role division takes place as one parent,
                                                                           reason. For most, finding a babysitter with whom they can safely            usually mom, becomes the autism expert, while dad works harder to
                                                                           leave an autistic child who has toileting issues, little communication      earn money or opts out. Differences of opinion exasperate an already
                                                                           skills, aggression and other inappropriate behaviors on a regular           difficult situation—how much time, energy and money is to be spent
                                                                           basis is difficult (Sicile-Kira, 2004). Another reason is their lack of     on helping the child is based on personal philosophy, and this is
                                                                           belief that they will find a therapist understanding of their particular    where the couple may clash. Over time, dad becomes frustrated at the
                                                                           circumstance who can offer any true guidance, thus preferring to use        demands of the mother to interact or play with a child who does not
                                                                           the precious time away from the child to confide in a good friend.          know how, and moms become frustrated at the lack of involvement of
                                                                                                                                                       their partners.
                                                                           Marital stress around the child usually starts when one or both of
                                                                           the parents realize the child is not developing properly. Couples with      As well, a common pattern among moms is to wonder what they did
                                                                           a child who does not seek their attention in the usual way (i.e., eye       wrong—drinking or taking medications during pregnancy, exercising
                                                                           contact, reaching out for or giving affection, seeking comfort when         too much, allowing the child to be vaccinated; thus adding feelings of
                                                                           hurt) find it hard not to feel rejected or unimportant to the child.        guilt to an already stressful situation. Also, the couple eventually feels
                                                                           For those whose child develops normally and then regresses around           isolated because they feel it is hard to take an autistic child to people’s
                                                                           18-24 months, there is the added loss of the child they knew slipping       homes and are uncomfortable inviting people over.
                                                                           away. Consider also that a couple looks forward to having a child, and
                                                                                                                                                       Sometimes the couple becomes closer than ever, bonded in their
                                                                           each person had an idea of what the expected child would be like.
                                                                                                                                                       shared circumstances. Unfortunately, the stress of dealing with autism
                                                                           When the child does not match the expectation, or regresses, there is
                                                                                                                                                       and all it entails (the constant and necessary advocacy at school,
                                                                           a loss and anguish felt by the parent not unlike the stages of grief that
                                                                                                                                                       fighting for services and support, added financial burden, trying to
                                                                           people who lose a loved one experience (Sicile-Kira, 2004).
                                                                                                                                                       handle behaviors and meltdowns at home) becomes a wedge pushing
                                                                           Other stages of added stress are getting a diagnosis (family physicians     the parents further and further apart. Overwhelmed, stressed and
                                                                           are reluctant to make a diagnosis on a condition, once rare, for            exhausted, the couple’s communication becomes impaired and even
                                                                           which they have no set treatment plan to prescribe); getting services       autistic-like, lacking emotion and reciprocity. This can affect other
                                                                           (a constant struggle); dealing with adolescence (sexual development         children in the family.
                                                                           appears, uncontrolled tantrums can be dangerous as the teen gets
                                                                           bigger); and post high school (the realization that few adult services
                                                                           are available) (Sicile-Kira, 2006).

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Grandparents                                                 Siblings                                             in social activities. When one of the parents
Unlike the parents who are totally focused                   The challenges of having a brother or sister         has Asperger’s syndrome (AS), this creates
on the autistic child’s needs, grandparents                  on the spectrum can have both positive and           another set of challenges.
are concerned about the effects of autism                    negative effects on a sibling. The factors                                                              The challenges of having a brother or sister on the spectrum can have
                                                                                                                  An Asperger Marriage
on their adult children (the parents), other
grandchildren and future generations. They
also suffer stress similar to that of parents
                                                             that affect how a sibling adjusts include
                                                             family size, severity of the brother or sister’s
                                                             impairment, age of the sibling at the time of
                                                                                                                  As Asperger’s syndrome has only been
                                                                                                                  recognized since 1994, there are many
                                                                                                                                                                           both positive and negative effects on a sibling.
and siblings. Grandparents are concerned                     the diagnosis, gender and age of sibling, and        adults with AS who have been misdiagnosed
about the difficult situations they see their                their place in the birth order. The parents’         and treated for mental illness. Although
own children experiencing. They may                          attitudes and expectations have a strong             traditionally three out of four children          the same activities, due to a need for sameness   Finding out that a partner has an ASD can         autistic child and have a different viewpoint
provide the autistic child’s parents (who                    bearing on how a sibling adjusts.                    diagnosed with an ASD are male, there is          and inability to empathize. It is this lack       provoke different feelings. One of them is        when it comes to how much effort and
may be depressed, single, or divorced) with                                                                       growing consensus that there may actually         of empathy that has the biggest impact on         anger at missing out on aspects of a marriage     money to put into treatment, as well as what
                                             Many siblings develop a maturity and sense                           be more females with AS who have been             the AS partner’s ability to understand his or     to which the partner was looking forward.         kinds of treatments to pursue.
necessary support in the way of childcare,
                                             of responsibility greater than that of their                         misdiagnosed with other conditions.               her partner, as well as any children, and to      Another feeling is relief that the partner is
financial support and advocacy. But, they                                                                                                                                                                                                                               Encouraging fathers to take a more active role
                                             peers, take pride in the accomplishments of                          The following information is based on             recognize that others’ needs, perceptions and     not trying to shut the other one out, he is
may also contribute to stress because of                                                                                                                                                                                                                                with agreed upon treatments, generalizing
                                             their brother and sister, and develop a strong                       heterosexual partnerships, although it occurs     thoughts are different from their own (Aston,     just unable to provide the emotional response
conflict regarding behavioral symptoms                                                                                                                                                                                                                                  some of the skills the child has learned
                                             sense of loyalty. Siblings of ASD children                           in same-gender relationships just as it does in   2005). Poor empathy in the AS parent may          needed (Slater-Walker & Slater-Walker,
and treatment (Hillman, 2007). Sometimes                                                                                                                                                                                                                                through his ABA (Applied Behavioral
                                             are usually more tolerant of differences in                          the population at large.                          contribute to behavioral and psychological        2002). For children, the reaction is similar.
grandparents get involved in the blame-                                                                                                                                                                                                                                 Analysis) program, helping with structure,
                                             people and show compassion to others with                                                                              problems in the children. However, a parent       The positive aspects of having a spouse
game about the possible causes of the                                                                             Sometimes the diagnosis of an adult follows                                                                                                           limit setting and discipline can be very
                                             special needs. However, many siblings feel                                                                             with AS may be better able to understand and      with Asperger’s can include the realization
child’s autism, which can be particularly                                                                         that of the offspring; sometimes it follows                                                                                                           helpful. For this to occur, fathers need more
                                             resentment at the extra attention the child                                                                            cope with a child who has the same diagnosis.     that they are in most cases loyal, honest
troublesome if the couple splits up and there                                                                                                                                                                                                                           information and training. A good online
                                             with autism receives, and some feel guilt over                       marital therapy; and sometimes problems at
                                                                                                                                                                                                                      and dependable. Those who are diagnosed       Branden H. Henline, PhD
are disputes over custody.                                                                                        work finally lead to a diagnosis. A partner       Anxiety and stress can run high in adults                                                           support group is The Father’s Network.
                                             their own good health. When young, they                                                                                                                                  as adults who knew they were different feel
                                                                                                                                                                    with Asperger’s due to the difficulties in
                                                                                                                                                                                                                                                                    the In the D. Howard, EdD
                                                                                                                                                                                                                      empowered and relieved once they receiveMichaelsame way, providing available and
Grandparents may want to help by             may think they can “catch” autism from their                         may seek out a therapist with complaints of
babysitting, but most do not have the        sibling. They may also feel saddled with what                        a cold, uncaring, and unemotional husband,        communication and social interaction.
                                                                                                                                                                                                                      diagnosis, as now they have a starting point      willing grandparents with information and
training in behavior management or may       they perceive as parental expectations for                           although she may have chosen her mate             Most lack what we think of as “common
                                                                                                                                                                                                                      for finding strategies that are helpful (Carley,  a little training that can enable them to step
not have the physical strength required to   them to be high achievers. Many feel anxiety                         because he appeared calm and reliable. An         sense.” Body language and subtexts of
                                                                                                                                                                                                                      2008).                                            in and give the parents a few hours of respite
handle behavioral episodes. They may just    about how to interact with the autistic                              AS adult may appear depressed due to his          intonations are lost on them, so that they
                                                                                                                                                                                                                                                                        can be beneficial to all involved. Explaining
want to play with the child and spoil him or brother or sister, and feel rejected by the                          flat affect, monotone, and lack of direct eye     may hear the words that are spoken, but           How Therapists Can Help                           to them why their grandchild acts the way
her, and end up feeling rejected by the lack lack of reciprocality. Often, there is a feeling                     contact. Others may appear controlling and        not understand the real message or context.       There many ways in which therapists can help      they do (i.e., sensitivity to sound and light,
of typicalTheraphy Mag_Ad Art.qxd 11/8/07 2:21 PM having to1
                                             of resentment at Page take on extra                                  rigid, insisting everyone in the household        Persons on the spectrum can be honest             the family unit with an autistic member. For
Family                                                                                                                                                                                                                                                                  not being able to make sense of the world,
                                             household chores, coupled with restrictions                          stick to the same schedule and participate in     to a fault and may make inappropriate             families who need more information, or need       lack of communication skills) is helpful.
                                                                                                                                                                    comments in public, thus appearing rude and       access to a support group, the Autism Society of  Suggest that they offer to do a specific task,
                                                                                                                                                                    uninterested in social situations.                America has local chapters that can be helpful    such as teaching the child to catch and return

                       Expand Your Professional Horizons                                                                                                            These same communication problems effect
                                                                                                                                                                    a person’s ability to keep a job or move up the
                                                                                                                                                                                                                      (see the resource directory in this issue).
                                                                                                                                                                                                                      Couples need to be encouraged to
                                                                                                                                                                                                                                                                        a ball or play a simple game, or teach a simple
                                                                                                                                                                                                                                                                        learning skill which needs much repetition

                                                                    Ph.D. in Depth
                                                                                                                                                                    corporate ladder. Temple Grandin, PhD, author                                                       and positive reinforcement. In this way, they
                                                       with a                                                                                                       of Thinking in Pictures and animal scientist,
                                                                                                                                                                                                                      acknowledge and face the emotions of the
                                                                                                                                                                                                                                                                        can understand both the effort needed and
                                                                                                                                                                                                                      grief cycle (i.e., denial, grief, depression,
                                                                                                                                                                    often speaks about how she almost got fired       anger) and the loss of the child they were        the excitement to be had in teaching their

                                                                                                                                                                    from her first important job because she kept                                                       grandchild an interactive skill. Grandparents
                                                                                                                                       with                         writing letters to the CEO telling him how he
                                                                                                                                                                                                                      expecting, and to work through these
                                                                                                                                                                                                                                                                        will feel empowered knowing they are
                                                                                                                                       emphasis in                                                                    emotions. Misdirected anger is often released
                                                                                                                                                                    could improve the company. She had no clue                                                          making a positive difference in the family’s

                                                                                                                                                                                                                      at school personnel in Individualized
                                                                                                                                                                    that the hierarchy at work dictated how, what,    Educational Program (IEP) meetings or taken life, and the parents will feel supported
                                                                                                                                                                    and to whom you communicate.                      out on service providers, thus alienating the     and more relaxed. Information geared
                                                                                                                                                                                                                      very people who are there to help.                towards grandparents can be found at the
                                                                                                                                                                    Physical demonstrations of affection can be
                                                                                                                                                                                                                                                                        Grandparent Autism Network.
                                                                      Pacifica Graduate Institute’s Ph.D. Program in Depth Psychology with Emphasis                 difficult for those adults who suffer from        Encouraging couples to regularly schedule
                                                                      in Psychotherapy is designed for practicing therapists, social workers, mental health         sensory processing disorder and are overly        time together without the children is             For the non-autistic sibling, knowing
                                                                      professionals, and others in the field who wish to engage in doctoral studies with an         sensitive to touch. Often, the AS spouse          important. However, this suggestion is            that they can ask questions and discuss
                                                                      intensive focus on depth psychotherapy.                                                       is surprised that his partner and children        useless unless the therapist can support them     their feelings is important. Help parents
                                                                                                                                                                    are feeling unloved and unsupported, not          in devising a practical plan for finding the      understand the needs that siblings have, as
                                                                      Pacifica is an accredited graduate school with two beautiful campuses located                 realizing that his behavior does not show                                                           sometimes these get lost in the shuffle. The
                                                                                                                                                                                                                      respite they need.
                                                                      a few miles south of Santa Barbara, California. In a unique educational format                the support and love he has for them.                                                               non-autistic children need some quality time
                                                                      designed for doctoral candidates with existing professional commitments, residential          The AS partner’s inability to read non-           The lack of qualified babysitters can be a        alone with their parents on a regular basis.
                                                                      class sessions take place monthly in a Friday, Saturday, Sunday sequence.                     verbal communication makes it difficult           very real obstacle to finding time together       Parents need to be aware of the sibling’s
                                                                                                                                                                    to differentiate between when a partner           or continuing therapy. Working on good            feelings in order to develop strategies of
                                                       Call Wendy Overend, Director of Admissions at 805.969.3626, ext. 128                                         wants to have intercourse or just snuggle.        communication skills and looking at how           support to help him or her adapt.
                                                                                                                                                                                                                      they can support each other is important. The
                                                       or email Get information online at                                   Some couples report that the partner on the
                                                                                                                                                                                                                                                                        Provide siblings with information about
       249 Lambert Rd., Carpinteria, CA 93013                                                                                                                       spectrum insists on routine even in sexual        couple needs to realize and accept that their
                                                                                                                                                                                                                      partner may react differently to having an        autism (such as why the ASD sibling acts the
                                                                                                                                                                    activity (Aston, 2003).
                                                                                                                                                                                                                                                                        way he or she does) in a positive manner at
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                                                                                                                                                                     TherapistLocator.netAd:Layout 1      10/4/07    3:26 PM      Page 1

the age level necessary, and suggest children’s        day at work, giving her a kiss) is effective.          References
books which are available on ASD. The                  My research indicates that those willing to            Aston, M. (2003). Aspergers in love: Couple
                                                                                                              relationships and family affairs. London: Jessica
sibling may also benefit from joining a                learn can be taught expected behaviors and
                                                                                                              Kingsley Publishers.
support group for siblings of special needs            strategies. Some of these include teaching the
children. This can be extremely beneficial in          “hidden curriculum” (i.e., what non-autistics          Aston, M. (2005) Growing up in an Asperger family.
                                                                                                              Counseling Children and Young People Journal.                                                                           “I want to thank you for the benefit of the
helping the child realize they are not the only        automatically learn and take for granted,
                                                                                                              Autism Society of America. (2008). Family life.                                                                service that is part of clinical
one going though this.                                 making lists for visual learners). For more social
                                                       competence at work, having a mentor there
                                                                                                              Retrieved April 9, 2008, from www.autism-society.                                                                       membership at AAMFT; referrals from the
Siblings need to be reminded often that                                                                       org.
                                                       who can explain the non-autistic expectations,                                                                                                                                 Website come into our office on a regular basis.”
they have just as much of their parents’ love                                                                 Bolman, W. (2006). The autistic family life cycle:
                                                       and writing a list or drawing a map of the                                                                                                                                     Jim Thomas, LMFT, Approved Supervisor
as their autistic sibling, even if parents may                                                                Family stress and divorce. Retrieved April 9, 2008,
                                                       hierarchy and expected communications at each
need to give more time and attention to the                                                                   from
                                                       level can be well worth the effort. The Global         s1940.htm.                                                                                                              “I definitely believe the service has enhanced my
brother or sister with autism. It is important
                                                       and Regional Asperger Syndrome (GRASP)
that the non-autistic sibling have a private,                                                                 Carley, M. (2008). Asperger’s from the inside and                                                                       practice. People who use the service tell me that
                                                       is a good online network for people on the             out: A supportive and practical guide for anyone
autism-free zone to call their own, and a                                                                                                                                                                                             they appreciate being able to get an idea of my
                                                       spectrum; information for partners and families        with Asperger’s syndrome. New York: Perigee.
secure place to keep their precious objects.                                                                                                                                                                                          background and areas of expertise.”
                                                       can be found at Asperger Syndrome Partners             Hillman, J. (2007). Grandparents of children
They also need to see that the sibling with
                                                       & Individuals, Resources, Encouragement and            with autism: A review with recommendations
                                                                                                                                                                                                                                      Nancy K. Gardner, Ph.D.
ASD is given consequences if he wrecks their
                                                       Support; and Families of Adults Affected by            for education, practice, and policy. Educational
things, and that he is expected to improve his
                                                       Asperger’s Syndome. All of these resources are         Gerontology, p. 513-527.
behaviors over time.
                                                       included in the directory at the back of this issue.   Sicile-Kira, C. (2006). Adolescents on the autism
In a partnership between a person with                                                                        spectrum: A parent’s guide to the cognitive, social,
Asperger’s syndrome and a non-autistic partner,                                                               physical and transition needs of teenagers with
each partner must recognize the differences they                         Chantal Sicle-Kira, BA, is           autism spectrum disorders. New York: Perigee.

have and why. If the partner with AS refuses                            president of Autism Making A          Sicile-Kira, C. (2004). Autism spectrum disorders:
                                                                        Difference, Inc., which provides      The complete guide to understanding autism,
to acknowledge that his behaviors and actions
                                                                        consultation, training and            Asperger’s syndrome, pervasive developmental
towards the partner are unacceptable, then there                        seminars on ASDs. She is the          disorder, and other ASDs. New York: Perigee.
is little hope for the relationship.                   author of Autism Spectrum Disorders (2005 ASA
                                                                                                              Slater-Walker, C., & Slater-Walker, G. (2002). An
                                                       Outstanding Book of the Year), and Adolescents

Understanding the deficits, reinforcing the                                                                   Asperger marriage. London: Jessica Kingsley
                                                       on the Autism Spectrum Disorder, both published
strengths, and acknowledging the needs of              by Penguin. Her third book, Autism Life Skills, will   Publishers.
each partner is helpful. Teaching the willing          be published October 2008.
AS partner behaviors that are important to
his spouse (such as greeting her when he                                                                                                                                                         Clinical Members, Help Clients find You!
walks in the house, asking about the partner’s
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                                                                                                                                                                                                    AA                  American Association for
                                                                                                                                                                                                                        Marriage and Family Therapy

                                                                                                                                                                                                    MFT                  Advancing the Professional Interests
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