ContentServer (22)

WORKING WITH FAMILIES LIVING WITH AUTISM:POTENTIAL CONTRIBUTIONS OF MARRIAGE AND

FAMILY THERAPISTS

Jason Neely, Ellen S. Amatea, Silvia Echevarria-Doan, and Tina TannenUniversity of Florida

This article introduces marriage and family therapists (MFT) to some of the commonissues faced by families that have a child with autism spectrum disorder (ASD). First,autism is dened and common myths surrounding it are discussed. Next, relationalchallenges are presented that families report experiencing during early childhood throughthe elementary school years, adolescence and the transition into adulthood, and the lateryears of the family life cycle. Real-life stories are included to illustrate the potentialcontributions that MFTs can make to families that have a child with ASD.

Autism is a complex developmental disorder that typically appears during the rst 3 yearsof a childs life and is the result of a neurological disorder that affects brain functioning. Aut-ism negatively affects the childs social interactions, communication skills, and pretend or ima-ginative play. The impact on the family of a child receiving an autism diagnosis can bedevastating both socially and emotionally. Not only do parents with a child with autism strug-gle to gain a clear diagnosis and secure appropriate treatment for their child, but they mustalso deal with the disappointment of having a child who does not respond to their attentionand care in a typical fashion. Furthermore, the childs behavioral limitations can dominatefamily life and restrict the familys outside activities.

While there is a substantial body of literature focused on treatments for individuals withautism, there are few scholarly works that depict the experiences of the families. Moreover, theavailable literature typically has focused on how the family can help their child overcome his orher decits. We believe the emotional issues that family members face in living with autismshould be addressed with the same vigor as the logistical issues of getting treatment for a childwith autism. We also believe that much can be learned from the families themselves about theemotional issues they face and how they deal with them. We hope to provide a more in-depthpicture of the issues faced by a family living with a child with autism by including statementsfrom parents of children with autism that we have encountered professionally and personallythroughout the years. Names are not used, and specic details have been altered to protecttheir identity. In this article, we rst dene autism and some of the myths surrounding it. Wethen describe the challenges that families report experiencing during three major periods oftheir childs life: (a) early childhood through the elementary school years, (b) adolescence andthe transition to adulthood, and (c) autism in adulthood and the later years. Real-life examplesare provided illustrating the potential contributions of MFTs to these families.

To offer some background on us as coauthors, it is important to note that we are all col-leagues at the same university who came together to write about families that have a child withautism based on our own personal and professional interests and experiences. The rst author

Jason Neely, MA, is a doctoral student in Marriage and Family Counseling in the Counselor Education

program at the University of Florida; Ellen S. Amatea, PhD, is a professor in the Counselor Education program at

the University of Florida; Silvia Echevarria-Doan, PhD, is an associate professor at the University of Florida; Tina

Tannen, PhD, is clinical faculty at the University Counseling & Wellness Center at the University of Florida.

The authors would like to thank Cara Phillips for her thoughtful suggestions and comments in reviewing this

manuscript.

Address correspondence to Jason Neely, 1215 Norman Hall Box 117046 Gainesville, FL 32611-7046; E-mail:

[email protected]

Journal of Marital and Family Therapydoi: 10.1111/j.1752-0606.2011.00265.xJune 2012, Vol. 38, No. s1, 211226

June 2011 JOURNAL OF MARITAL AND FAMILY THERAPY 211

is a doctoral student who has worked extensively with children with autism and their familiesutilizing applied behavior analysis (ABA) methodology. Upon entering graduate school, heshifted his focus to the family and is pursuing a degree in Marriage and Family Therapy. Healso plans to complete his dissertation on families with a child with autism. The second andthird authors collaborated on focus group research that explored the experiences and needs offamilies with autistic children (from which several of the quotes by parents for this article werederived). As faculty in a marriage and family therapy program, they also drew upon theirknowledge about family therapy practice in terms of roles that MFTs can take with families ofchildren with autism. On a more personal note, the second author has also drawn from herown experience with a younger brother who lived through adulthood with Asperger syndromeduring a time when the diagnosis of autism spectrum disorder was not well known. The fourthauthor is a PhD graduate of our program who is currently clinical faculty at the universitycounseling and wellness center, and mother of a young adult son who was diagnosed with aut-ism at the age of 13.

DEFINING AUTISM

First documented in 1943 by Leo Kanner, autism is a disorder that is social in nature.Three separate areas of need distinguish children with autism. First, these children usually havedifculty with social interactions (e.g., no interest in playing with others or understanding ofreciprocity in interactions with other children). Second, communication is often severelyimpaired, and in some cases, verbal skills are non-existent. A third feature of autism is stereoty-pic behaviors (e.g., hand apping, or intense body rocking), along with restricted interests andactivities. Because autism, or autistic disorder, is in fact one disorder within a range of autisticspectrum disorders (ASD), children can demonstrate varying capabilities. On the higher func-tioning end of the spectrum (e.g., Asperger syndrome), a child may have many substantial com-munication skills, including a large verbal repertoire; yet, his or her social interactions mayseem a bit odd. On the lower functioning end of the spectrum, a child may be non-verbal andhave very few daily living skills.

The DSM-IV places autism in the broad, umbrella category of Pervasive DevelopmentalDisorders (PDD). PDD in children are characterized most notably by severe delays in socialand communication skills. Autistic disorder, or autism, is one disorder within the range ofASD. This group includes autism, Asperger syndrome, and Pervasive developmental disor-dernot otherwise specied (PDD-NOS). (There are two additional PDD diagnoses not asso-ciated with autism: Rhetts syndrome and Childhood Disintegrative Disorder.) For theremainder of this paper, we use the term autism and ASD interchangeably.

Sixty-seven years after Kanner, much more is known about autism. For example, it is nowknown that there is a strong genetic component to autism, with a strong hereditability factoramong family members (Muhle, Trentacoste, & Rapin, 2004). Additionally, because there arethree distinct features of autism (i.e., social deciencies, communicative decits, and stereotypicbehaviors and restricted interests), some researchers now believe that each feature of autism isa distinctive impairment with its own genetic components and thus a separate issue. Therefore,one global explanation of or theory for autism and its treatment is highly unlikely (Happe,Ronald, & Plomin, 2006; Mandy & Skuse, 2008).

Myths and MisinformationDespite the increase in knowledge about the characteristics of autism, there are still many

myths that exist about the cause and course of autism. These myths can negatively inuenceboth families and their autistic child. When working with families, MFT practitioners must becareful not to perpetuate these myths or provide unhelpful advice. The following are some ofthe most common myths about autism:

Autism is caused by vaccines received in infancy: Although this myth has received anabundance of media attention lately, researchers have found no link between vaccinesand autism (Doja & Roberts, 2006). In fact, the medical journal that rst published a

212 JOURNAL OF MARITAL AND FAMILY THERAPY June 2012

paper linking vaccines and autism has issued a full retraction (Harris, 2010). There isno known denitive cause for autism.

Autism is the result of some emotional distress experienced by the mother during preg-nancy or as a result of bad parenting: A denitive cause for autism is unknown, as thereis a complex interplay between genetics and other environmental factors. Autism occurswithout emotional distress or bad parenting. It is imperative that parents understandno one is to blame for their child having autism.

A child with autism will outgrow current problem behaviors: Autism is a life-long disorderwith no cure. A child with autism will become an adult with autism. It is harmful tosuggest that a child will grow out of problem behaviors reported by a parent. Whileelimination of problem behaviors might be unattainable, there are eective interven-tions available to reduce problem behaviors, as well as teach daily living skills to help achild with autism lead a more normal life.

A person with autism cannot be educated: One of the most eective interventions forautism is educational in nature. Persons with autism need highly individualized educa-tional environments in which they can receive both life skills and occupational skillstraining.

People with autism do not make eye contact, smile, laugh, or show other signs of aection:While autism is a disorder characterized by impairments in social interactions, peoplewith autism are capable of aection and emotions. People with autism are not asresponsive to typical social cues, so the person with whom they are interacting mustshow more understanding in the interaction. The lack of response to normal social cuesdoes not mean there is an absence of typical human emotions and feelings. There is evi-dence that people with autism experience various forms of touch and contact dierentlythan a typically developing person (Minshew & Hobson, 2008; Rogers & Ozono,2005). Hence, it takes extra care to help a person with autism show, and respond to,various feelings and emotions in a more socially acceptable manner.

There may be other myths, misinformation, and unhelpful advice that a practitioner maycome across when working with a family that has a child with autism. It is beyond the scope ofthis article to provide comprehensive information about autism; however, it is crucial for practi-tioners to be informed on the key issues in autism. The more accurate the information a practi-tioner has, the better equipped he or she is to help a family get the appropriate services neededfor their child.

CHALLENGES FACED BY FAMILIES WITH A CHILD WITH AUTISM

Families report considerable stress in coping with a childs autism owing to the lack of cer-tainty of etiology, the ambiguity of diagnosis, the demanding nature of the childs disability,and the lack of consensus on preferred treatments and interventions. In fact, parents and sib-lings of children with autism spectrum disorders report experiencing more stress and depressionthan do parents and siblings of children who are normally developing or even those who haveother disabilities (Bagenholm & Gillberg, 1991; Bouma & Schweitzer, 1990; Dumas, Wolf,Fisman & Culligan, 1991; Gold, 1993; Gray, 2002). Moreover, parents with a child with autismhave described certain periods in the childs life when they experience particular stresses (Block& Hartsig, 2002; Whitman, 2008). Yet, much of the research on families dealing with autismhas not dierentiated among families with children at varying levels of functioning. Certainly, achild at the lower functioning end of the autism spectrum may place greater demands for careon their family than that of a child at the high functioning end of the autism spectrum. How-ever, we have a limited understanding as to how dierences in the autistic childs functioningaect families. In the following sections, we describe certain stresses faced by families at threemajor periods in their childs life: (a) early childhood and the elementary school years, (b) ado-lescence and the transition to adulthood (Whitman, 2008), and (c) ASD in adulthood and thelater years. Additionally, we do not wish to imply that families with children with varying levelsof functioning experience these stresses in similar ways, or that one intervention approach willwork for families facing such dierent demands.


Early Childhood Through the Elementary School YearsIn this section, we rst describe the challenges that families often face during their childs

infancy and early childhood. We next discuss the difculties faced by the family when the childwith ASD is in elementary school. We then present a real-life case depicting how one familywas assisted in responding to some of these issues.

The concerns families face during their childs infancy and early childhood include the fol-lowing: (a) identifying that the child has a problem and gaining a clear diagnosis, (b) copingwith family members emotional reactions to the disorder, (c) helping families make treatmentdecisions, and (d) developing a support system. We then describe three additional circumstancesfamilies often face when their child with ASD enters a formal school setting. These include(a) creating new routines and roles, (b) developing relationships with new service providers, and(c) advocating for appropriate services.

Identifying the childs problem and gaining a clear diagnosis. Although some parents reportpositive experiences, most parents express frustration with the diagnostic process, (Hastings &Taunt, 2002; Osborne & Reed, 2008). However, one needs to be mindful that the symptoms ofchildren with ASD vary in severity. In cases of severe ASD symptomatology, most symptomsappear in infancy and most of these children typically are diagnosed by about age three(Whitman, 2008). However, children with less disabling forms of ASD (e.g., Aspergersyndrome) may be much more dicult to diagnose and may not be identied as having ASDuntil they are much older and are enrolled in school. A survey by Howlin and Moore (1997)with 1200 families with children with ASD revealed that many of these parents expressed anearly sense of a problem and sought help from their medical practitioner when their child wasas young as 2 years of age. Parents often reported two distinct time frames at which they recog-nized that something was not right with their child during infancy and the early childhoodyears. The rst was at the time of the childs birth or soon thereafter. The second was around23 years of age, when their previously typically developing child experienced a sudden regres-sion. However, there are still many children who are not diagnosed until they are much olderand are enrolled in schools. This can be especially dicult for family members as years passand they know something is not right, yet cannot identify or explain the exact problem.

Because there is a range of ASD in which children may demonstrate subtle rather thansevere impairments in their communication and social interactions, it can often be difcult forparents to determine whether their child actually has some form of autism. Particularly whenchildren demonstrate high levels of functioning (such as with Asperger syndrome), there maybe disagreement between the parents, other family members, and even professionals about thevery existence of an impairment. Not only do these conicts have ramications for parentsrelationship with each other and with their child, but the experiences family members have withprofessionals before the problem is clearly identied can often generate strong emotions such asanger, anxiety, and guilt and result in reactions of defensiveness and denial.

The task of gaining a clear diagnosis can be one of the greatest challenges that a family faces.Despite the exponential increase in knowledge about autism and its related disorders, numerousresearchers have documented that a major source of stress for many parents of children withsuspected ASD is the diagnostic process. According to Mansell and Morris (2004) and Oberheim(1996), many parents reported that the process of getting a diagnosis was slow, chaotic, and badlyhandled. While we are not suggesting that MFTs become skilled in diagnosing ASDs, we dosuggest that MFTs become knowledgeable about autism (this article along with the Appendixmay benet MFTs in this respect). For a further review on these technical issues, see Charles,Carpenter, Jenner, and Nicholas (2008) and Volkmar, Chawarska, and Klin (2005). Autism isvery dicult to diagnose. Ambiguity is a common theme in families reports about getting adiagnosis. It is quite possible that families will need to seek a second or third opinion, and eachdoctor may provide a dierent opinion. MFTs are well qualied to support families as theystruggle with this dicult task. The MFT can also help the family begin the process of examininghow autism is aecting their family and deciding how to handle the high level of ambiguityinherent in getting a diagnosis and deciding on a treatment regimen for their child.

Understanding family members emotional reactions. For parents whose child receives adiagnosis early in life, this realization can be extremely difcult as many hopes and dreams for


their childs future are dashed. The idea that something is not right with ones child is difcultto handle. Although the parents might know something is not right with their child, it can bequite difcult to act on that knowledge. When the doctor conrms their idea that something iswrong with their child, parents and other family members can respond to this news with a widevariety of emotions and coping strategies. Some parents might need a safe and secure space tobegin the process of mourning. Others might need afrmation that it is okay to cry and tomourn the loss of their hopes and dreams for their child and to be fearful as to what the futuremay hold.

While each family situation is unique, parents who initially had a typically developing childand then saw a regression may experience elevated levels of self-blame, thinking that they didsomething wrong to cause these newly emerging problems with their child. Moreover, thesefeelings of blame and guilt may remain unexpressed owing to family norms. Left unacknow-ledged these feelings can negatively impact the relationships that family members develop witheach other and with the professionals that work with their child. For example, when told byher pediatrician that her son was autistic, one mother commented:

Immediately the guilt comes in. What did I do? I went over my pregnancy. Could Ihave prevented this? Should I have stopped work sooner? Maybe it was a medication Iwas taking. Rationally I knew there was nothing I could have done to prevent this,but I still felt guilty.

Not only did this mother experience a high level of guilt that she was to blame for herchild developing autism, she also believed that she should devote herself to doing everythingpossible to help her child improve. How might these feelings and beliefs affect her willingnessto consider how family roles and responsibilities should be distributed among family members?How might these reactions inuence her choices for how she distributes her energies in caringfor her other non-disabled children?

Humans are social beings for whom there is a strong, fundamental drive to form relation-ships of many kinds (Baumeister & Leary, 1995). Yet, children with autism lack the capacity toform relationships in a manner that is in accordance with a typically developing child. Kanner(1943) interviewed a number of parents with children with what is now known as autism. Theseparents described their children as happiest when left alone, acting as if people [were nt]there, and perfectly oblivious to everything about [themselves] (Kanner, 1943, p. 242).Given these descriptions, MFTs can be of benet in helping family members acknowledge thediculty in interacting with such a child. It is important for all family members to have thespace to discuss censored thoughts, feelings, and emotions and the potential impact they haveon family relationships. The following are some questions family members may consider: Howdoes one avoid creating a family life that is completely centered on the child with autism? Canthe father express his frustrations with the lack of sexual intimacy in the couple? Does themother have the space, or energy, to disclose how she feels alone in parenting a child with aut-ism? Does anyone listen when a sibling tries to say she feels unloved?

Hence, during this stage and subsequent stages of the childs life, it is important that anMFT provide the space for a family to grieve or mourn the loss of hopes and dreams for theirchild. Quite often, there is a tendency for family members to become consumed with accessingresources inside and outside the family to identify or do something to x the childs problem.In such a pressured environment, family members may decide to avoid expressing their feelingsand instead decide to soldier on to get things done. Although it is important to help thefamily mobilize needed resources, family members may need a space to examine their reactionsto getting such a diagnosis about their child. Unacknowledged reactions and emotions cangreatly impact treatment decisions and outcomes. Early childhood is also a time when basicbeliefs, meanings, and understanding about autism are formed. In the midst of this initial disar-ray, a family session can be a safe space for all family members to depart from their normalroutines and to bring up issues that get censored in daily life. These unspeakable topics mayrange from concern that a sibling is being neglected, to nancial matters, to emotional and sex-ual intimacy issues.


Helping families make treatment decisions. In order for families to make effective decisionsabout treatment for their child, they need sufcient information and a clear understanding ofthat information. In addition, families often need guidance in making decisions about theirchilds treatment or schooling for ASD. Yet, in a series of 15 focus groups conducted byOsborn and Reed (2008) with parents of preschool, elementary, and secondary aged childrenwith autism, a high proportion of these parents reported that they had not been given any help,support, or advice about the nature of ASD when given a diagnosis. One parent noted, Wewere left with this title and no information at all (Osborn & Reed, 2008, p 314).

Moreover, families are often inundated by contradictory and controversial informationabout the causes of and possible cures for autism and may be encouraged to enroll their childin treatments that overwhelm the familys economic and emotional resources. While familytherapists are not expected to know how to provide various treatments, it is highly benecialfor them to be knowledgeable about the relative eectiveness of dierent interventions. Sometreatments (e.g., chelation and certain prescribed diets) have not compiled much evidence oftheir eectiveness, yet are marketed as cures to autism. While it is important that the familytherapist provide frank and thoughtful sharing of their concerns about various treatments, oneobviously does not want to undermine a familys hopeful optimism and willingness to try atreatment that might help their child (Whitman, 2008). However, there are a number of inter-ventions such as applied behavioral analysis or medication that have provided strong evidenceas to their eectiveness. The appendix contains a list of resources that can help professionalsand families make educated decisions about various treatment options.

In addition, the family therapist will want to ensure that families have an awareness of theavailable intervention resources in their community for families (e.g., respite care) and the legis-lation supporting access to these resources. In the United States, there exists a body of disabil-ity and prevention-related early intervention federal legislation, primarily that of theIndividuals with Disabilities Act (IDEA). (See the international directory at http://www.wright-slaw.com for assistance with relevant legislation and support outside the United States.)

Developing a support system. Families have noted that their social lives are often impactedsubstantially by having a child with autism. Baxter (1989) suggested that parents are mostwilling to take their child with a disability to gatherings involving family and friends and leastwilling to take them to places involving people with whom they are not close. Certain socialsituations that parents felt particularly stressful were the following: (a) formal social occasionswhere the child does not conform to norms; (b) other persons homes where coping with thechilds behavior is dicult; (c) public settings where behavior management is a problem;(d) restrictive settings that do not readily allow parents to withdraw from the situation; and(e) social situations where the child engages in deviant forms of interaction with other people.Although a childs level of functioning may signicantly impact the social lives that their par-ents (and siblings) may experience, many families are able to achieve some degree of normaliza-tion if they have adequate social support. Bristol and Schopler (1984) found that families whoperceived themselves to have an adequate amount of informal support experienced less stress,despite the severity of their childs autism diagnosis, than did families without support. Supportgroups consisting of other parents like themselves are often eective forms of support for par-ents when their children are young and newly diagnosed.

Families often report that they experience major difculties when their child with autismenters formal schooling. Three quandaries experienced by families during this time are (a) creat-ing new routines and roles, (b) developing relationships with new service providers, and(c) advocating for appropriate services for their child and themselves.

Creating new routines and roles. Because a major feature of autism is the childs resistanceto change, total chaos can ensue when a childs entire social environment and routines are mod-ied as they enter formal schooling (Stoner, Angell, House, & Bock, 2007). For some families,the regular routines they have created after the initial diagnosis and accessing of early interven-tion services are upset when their child moves into a public school setting. Not only does thistransition upset established family routines (e.g., meal times and other daily living activities),but it demands changes that can be especially dicult for a child with autism and his or herfamily. An MFT can be of benet to the family at this time by assisting them in anticipating


the need to develop new routines and new family roles. For example, now that all the childrenare in school, the mother may decide to reenter the work force to ease the nancial burden onthe family. With such a change, would it now make more sense for the father to get the chil-dren ready for school as he has less distance to commute?

Developing relationships with new service providers. A family can go from working with afew specialists in an early intervention program to having to deal with a wide variety people inand outside of the school system (ranging from a principal, to a paraprofessional, to people inthe county or district ofce) who have varying levels of understanding and interest in servingthe needs of children with autism. One mother recalled her experiences of feeling that the pro-fessionals working with her child were questioning her competency as a parent.

Everybody hits you with the negatives. The whole meeting was about what my childcouldnt do. I just felt that I was being told that I really made a mistake when I hadthis child.

Moreover, the various service providers involved with a family can, and quite often do,come into conict with one another. To illustrate, an MFT might need to help a family discussparentprofessional relational issues that might be created when they are expected to shift froman established routine of having a speech therapist visit their home twice a week, to having pro-fessionals from a school system suggest different services. Additionally, a parent may need helpin negotiating what may feel like a bureaucratic school system that focuses on the child withoutmuch consideration for the rest of the family system. The MFT has an excellent skill set to helpfamilies examine their ways of communicating and making decisions with outside professionalsas well as within the family.

Advocating for appropriate services. How might a family respond constructively if they feelthat the school is not doing enough for their child? Federal legislation in Part B of IDEA speciesthe rights for services for children with disabilities ages 321. Currently, Part B is implemented pri-marily through public school systems with an individualized education plan (IEP). Unfortunately,many families discover that because IDEA is universally underfunded, there are wide variationsacross school districts in the extent of services provided. As a result, many families become pain-fully aware that their childs needs may not be met by what is offered within their school districtsprograms. In these cases, the law provides that the district must nance sending the child toanother program that will meet his or her needs even if the program is in another school district.However, this is usually a point of great discussion, if not dissension, between families and schoolstaff. Families must learn how to advocate for their child and pick their battles.

There are a number of helpful Web sites and family advocacy groups that specialize inassisting families in advocating for services for their child (see Appendix). In addition, an MFTcan assist parents in deciding how they might respond constructively to the sta at their childsschool. A parent might need to consider the nature of the message his or he combative beha-vior is sending to school sta in an IEP meeting. Alternatively, parents might need to investi-gate why there is no follow through in implementing the treatment plan developed in theirchilds IEP meeting Coaching a family in dealing with service providers and helping thembecome more aware of how they are inuencing their interaction with service providers areimportant roles that an MFT might play.

A Familys Story: Young childrenThe following family experience depicts the difculties that families face in attempting to

gain a diagnosis, dealing with parents feelings of guilt, and balancing the needs of the childwith autism with those of other family members.

From the moment he was born, our son did not sleep or eat well. As a rst time par-ent, I viewed these problems as evidence of my incompetence. When his languagedevelopment was delayed and we had him evaluated at age 3, the specialist recom-mended parenting classes that only served to conrm my self-doubt. My husband andI struggled through the rst few years of our sons elementary school, sorting through


recommendations from various therapists about school placements without a cleardiagnosis of his problem (he was not diagnosed with autism until age 13). Because hewas on the high functioning end of the spectrum, our concerns were met with minimi-zation by his teachers during those early years of school. After all, he could spell beau-tifully! However, his social and expressive language decits were not addressed. Wejust ached inside watching his anxiety rise every time he had to be with other children,seeing that he did not understand the stories he could so easily read, and feeling theresponsibility to help him yet not knowing how. In addition to all of this, one day Inoticed his younger brother inch as he walked by. I began to watch more carefullyand noticed that he would ing his arms at his younger brother seemingly absentmind-edly, yet actually hitting him at unpredictable times. I had taken for granted that myyounger son was ne because he coped quietly and beautifully in school, among hisfriends, and in our family life. But our younger sons reactions to his older brotherworried me, so I decided to arrange a therapy session for my family.

That session changed our familys life. The therapist helped us make space for ouryounger son to have a voice in our family. It was painful to hear how little attention hefelt he got in the face of his brothers needs. It was terribly important to me to be sensi-tive to all of my children, so to hear about my failure was not easy. However, the thera-pist was gentle with me and her simple questions to my son and his answers were like alightning bolt, waking me up to look around and see what was happening in our family.It was a gift to me to now have the opportunity to make changes that would benet all ofmy children. After that my husband and I made special plans to spend individual timewith our younger son and to change the way we managed their conicts. We were moresensitive when our younger son brought friends home to monitor the elders interferencein their play while also encouraging his inclusion when appropriate.

As this case illustrates, it is very easy for a family to have their lives dominated by theirchilds autism. Through facilitating open and safe conversations, the MFT helped the youngersibling express previously hidden feelings about his place in the family and how he wasimpacted by their child with ASD. In turn, the MFT also helped the parents to hear this childand to consider how they wished to reorganize themselves.

Additionally, an MFT could have been useful to this family as they struggled to nd anexplanation for the difculties they knew were occurring, yet no one else acknowledged. TheMFT could benet the family by listening to their struggle and offering suggestions of avenuesto explore. By listening to the family and not minimizing their struggle, the MFT could supportthe familys search for answers, avoid perpetuating myths and misinformation about potentialcauses, and avoid considering unhelpful solutions.

Adolescence and the Transition to AdulthoodAs there is currently no cure for autism, a child with autism will become an adult with autism.

We organized our discussion of the dilemmas faced by a family with an adolescent with ASD withthe issues of early adulthood to emphasize the importance of helping families prepare during ado-lescence for their childs transition to adulthood. Common difculties that families experienceduring this life stage includes the following: (a) handling adolescent physiological changes, (b) pre-paring for adulthood, and (c) dealing with changing nancial and logistical supports.

Handling adolescent physiological changes. Families often face new concerns when theirchild becomes an adolescent. These include the childs increased physical size and the emergenceof sexuality. The effectiveness of individual interventions and treatments needs to be constantlymonitored by the family throughout the childs life. However, this becomes especially importantwhen the child enters adolescence. Interventions that worked at one time may no longer do so.As is true with all children when they become adolescents, there can be a marked change in anadolescents behavior as hormonal levels uctuate. This is especially true with adolescents withautism. Many problem behaviors can emerge in adolescence as new feelings and sensations arediscovered (van Son-Schoones & van Bilsen, 1995). Safety also becomes a concern as problembehaviors develop, or persist, but now the adolescent is physically bigger and stronger.


In addition, the emergence of sexuality in adolescents with ASD can add another layer ofcomplexity to a familys already stressed life. Because people with ASD often have difcultieswith social interactions and cues, this can result in a lack of awareness of social norms regard-ing socially appropriate behavior as it relates to sexuality (van Son-Schoones & van Bilsen,1995; Sullivan & Caterino, 2008). As a result, persons with ASD may engage in inappropriatesexual behaviors such as public masturbation, inappropriate contact (e.g., hugging) of strangers,viewing discussing pornographic material, and nudism. Mixed with the emergence of sexuality,this can create a quite embarrassing and mortifying scene! As one parent noted:

One day I was walking downstairs to grab a quick snack before I had to leave thehouse. As I turned the corner I saw our son sitting at the computer naked with somenudy sites on the screen. I was absolutely frozen, yet all these emotions camerushing out. I then began to panic. What happened to our child? I couldnt everimagine him doing such things. What now? My gosh! What if this happened atschool?

A family therapist can help a family decide how they wish to handle the emergence ofinappropriate sexual behaviors in their adolescent with ASD. This may involve having parentsdevelop realistic goals for controlling their adolescents inappropriate sexual behavior. Forexample, in behavioral terms, masturbation is an automatically reinforcing behavior. That is,an adolescent engages in the behavior because it is stimulating intrinsically. Parents may wantthe unrealistic goal to reduce the occurrence of the inappropriate behavior to zero. An MFTmay assist them in developing the more attainable goal of shaping this behavior to occur onlyin private rather than public places.

In adolescence, the MFT should also focus on the familys overall functioning. How is thefamily adapting to changes in adolescence? Does the family sense a shift in educators philoso-phy when the adolescent enters middle school or high school? Of note, there is often more ofan emphasis at the secondary level on controlling a child (i.e., minimizing problem behaviors)rather than developing skill sets. How is the family functioning in its community outside of theschool system? Is the family as a whole becoming more isolated as the child ages? Are indivi-dual members becoming more isolated?

Preparing for adulthood. Adolescence is a time for preparation as well as a time for change.Typically, a transition to adulthood is a time period that is marked with the parents launchingtheir child into adulthood to become functional citizens in the world. Quite often, this does notoccur with a family that has a child with autism. Psychologically, this can be especially difcultfor parents as hopes and dreams that were lost (and yet not grieved for) in early childhood resur-face as the fear that their child will not reach full independence becomes realized. As in other timeperiods throughout the family life cycle, the family therapist can be a crucible of safety in whichthe family can navigate difcult, unacknowledged, and unspoken emotions. The MFT can helpfamilies to anticipate their childs transition into adulthood and to begin preparing early duringthe adolescent years. For example, does the adolescent with ASD have opportunities for socializ-ing outside the family? Some parents of high functioning young adults with autism who have beenin an inclusive setting in school create opportunities for social inclusion for their children afterthey have nished school through structured employment or advanced education. Other familiesdevelop opportunities for social inclusion by arranging living situations and locating roommatesfor their adult children with ASD. Questions the MFT can ask as the family helps their child pre-pare for adulthood might include the following: How does the family see itself now? How welldoes the family evaluate itself on how they live with autism? What have they done well? Whatmight the family like to do differently to move forward?

Preparing for changing nancial and logistical support. Typically, at the age of 21 (andsometimes 22), most school systems cease providing services for families that have a child withautism. The sudden lack of mandated services for autistic individuals past about 21 years ofage creates an abrupt transition for families when their child enters adulthood (Whitman,2008). For approximately two decades, a family may have been receiving help from varioussources with funding aids from federal and state governments. However, once the child reachesabout the age of 21 or 22, all services have to be paid for by the family. Moreover, many of


the logistical concerns that the school helped manage (e.g., identifying needed services andarranging for service providers) are now the sole responsibility of the family.

ASD in Adulthood and the Later YearsMost families with an adult family member with autism continue to experience substantial

economic and social stresses. One key issue involves the demands for family reorganizationbrought on by parental death. We describe this issue and then present a real-life story depictinghow one family was assisted by an MFT in responding to this challenge.

Revaluating family roles. As parents and other primary caregivers age and anticipate theirdeath, key questions emerge concerning what new arrangements need to be made for caretaking ofthe family member with ASD and who will have a voice in making those decisions. Questions thatthe MFT and the family may consider are: If the adult child has been living in the parents home,who will take care of this family member when the parents die? Are the siblings in the familyexpected to take over care giving or might there be other options for caretaking that the family maywish to explore? How does one determine the most appropriate placement? For example, does theadult child have sufcient daily living skills (e.g., dressing, bathroom, etc.) to live in a group home?If so, how severe are problem behaviors? Would institutionalization be a better option? Does thefamily have the nancial resources to support this living arrangement? More importantly, how willthese decisions be made? Who will have a voice in making these decisions and what kind of feelingsand emotions are evoked when these questions are raised?

There is relatively little information on adult siblings of persons with ASD and theirexperience of burden, guilt, and fear. Although some adult siblings live lives relatively free fromexcessive anxiety and fear, others do not (Seligman & Darling, 2007). These individuals oftenworry about how they will care for their sibling with ASD after their parents death. Other sib-lings may experience survivors guilt owing to their healthy lives contrasting sharply withthat of their sibling with ASD. Moreover, how the individual with ASD responds to beingcared for by their sibling may also create tensions. The MFT can play an important role forthe family at this stage by creating a context where family members can discuss their feelingsand concerns in an open manner.

A Familys Story: Preparing for Parental LossCaregiving for an adult with autism can be extremely challenging. And like the initial diag-

nosis of autism, the family may rarely be prepared for it. The following account depicts theinstrumental role that an MFT played in helping family members learn to express their con-cerns and plan together for the care of their adult sibling with ASD.

My family has struggled to understand and support my brother with Asperger syn-drome for a very long time. When he was growing up we knew that he was very intelli-gent yet fairly insensitive socially, however we had never heard of Aspergers. It wasnot until he lived with my husband and me for a semester when he went to college thatI began to notice the rigidity of his thinking, his peculiar obsessive behaviors, and hisinability to read social cues and engage in reciprocal social conversation. However, Idid not have a name or category for these behaviors; I just knew he was struggling. Iarranged for him to see a counselor at the college to talk about his academic strugglesand difculties making friends, but that contact was unsuccessful. The counselorreported that my brother did not see that there was a problem he needed to work on.There were at least three other occasions over the years where I arranged for him tosee a counselor due to his struggles to get launched. After a few sessions, each ofthese counselors noted that he was not particularly motivated to change his behaviorand recommended termination. Although my brother is brilliant, he never made itthrough college or any job training program (although attempted several), has neversuccessfully lived on his own, and has never held down a job for more than 6 months.He is now 50, has lived with my mother (who is now in her early 90s) for almost allof his life, and seemed to expect to always be taken care of by her.


I recently heard about Aspergers in a newspaper article, and made an appointment formy brother at a local autism center. This appointment resulted in a diagnosis ofAspergers. It was the rst time in 30 years that I felt some sense of comfort thatmaybe there was a reason that all the things my family had tried to do for or with mybrother had not worked. It also seemed to take the pressure off of me and my motherto gure out what we needed to do to get him launched. However, my family alsorecognized that we were all getting older. We needed to plan together for what wouldhappen when my mother died.

Every time we tried to talk to my brother about what he might do after our mother diedhe got angry, or said he did not want to talk about it. So I arranged for my family(my mother, my sister, my brother and myself) to meet with a family therapist who wasrecommended by the autism center even though I worried about how honest I could beabout my thoughts and feelings about my brother. When we met with the family thera-pist, I was relieved to discover that neither did the family therapist automatically assumethat I (or my sister) should care for my brother, nor did she force us to reveal how we feltabout having my brother live with us. Instead the family therapist slowed us down andgot my brother to talk about his life and who he was as well as allowing us to tell ourstories of what we had experienced and tried over the years to get him launched.

In this case, the family therapist was most benecial to the family by allowing for theexpression of many of the censored and unspoken thoughts and feelings that occurred over the50-year course of the brothers life. Through facilitating open and safe conversations, the MFThelped members of this family see the person with ASD as not just someone for whom they feltresponsible, but as someone who had his own hopes and strengths. Through creating a safespace, the MFT allowed the brother to express himself and his desire to live independently, andto help him examine what would be required of him to be as independent as he wanted to be.

Additionally, an MFT might have been useful in helping this family examine the roles theyhad played over the years that might have inadvertently reinforced the brothers lack of initia-tive. For instance, the mother and two sisters may have been a close-knit and over-responsiblesubunit with the brother as an outsider. Did the brother not assume responsibility for his ownwelfare, or did the mother and sisters inadvertently discourage him from assuming any respon-sibility for his own care? The MFT might also have been helpful to the family in exploring liv-ing arrangements and options before the mother dies. They might need to consider whether agroup home was possibility or whether it might be feasible to purchase a house with otherfamilies with a child on the higher functioning side of autism and have a house parent tohelp provide structure and guidance. Exploring these options with the family would not onlyprovide family members with the sense that they are not alone, it could also provide the adultchild with ASD (if he or she has the ability) with an opportunity to take a more active role inplanning his future.

POTENTIAL MFT CONTRIBUTIONS

As discussed in this article, raising a child with autism presents many challenges through-out the life span. Marriage and family therapists have a unique skill set to offer families explor-ing how they might live with autism. In the previous sections, we have alluded to several keyroles we believe that an MFT might fulll.

Facilitating Family GrievingThe MFT could be a great asset in discovering how a couple or family grieves. For

instance, the husband might complain that his wife never wants to talk about their child andhis autism diagnosis. The MFT can mediate by helping the couple understand that everyonegrieves differently. The MFT can further facilitate the couple by encouraging them to talkabout why the husband wants to talk and the wife remains quiet. For example, it is discoveredthat the couples family of origin (F.O.O.) has a great inuence on how they grieve, in particu-lar the wife who has experienced great loss throughout her life. The wife has never had the


opportunity speak about any of her losses as everyone in her F.O.O. grieves in silence. TheMFT helps this particular couple by balancing sessions with silence for the wife, and ASDrelated conversations for the husband. However, if the wife expresses a desire to talk moreabout her loss, the MFT can help as well by asking questions that focus on feelings. The MFTcan also encourage the husband to ask feeling-related questions in a respectful manner to helpfurther the conversation outside of session.

Other examples of differences in grieving are when one partner might tend to a gardenwhile the other stays up late reading. A sibling might need the space to create art. A grandpar-ent might simply need the opportunity to share in caretaking duties. Whatever the situationmay be, people need the space to grieve as they choose (as long as it is not destructive).

One crucial point to remember is that the grieving process is ongoing. It is nearly impossi-ble to grieve all at once. The child with autism goes through many developmental stages, andthere is grieving to be done at each stage. For example, parents might grieve for the toddlerwho does not play with others, the elementary school child who is not invited to parties or tospend the night out, or the teenager who is not working toward independence. Grief happensthroughout the familys life and not necessarily in any particular order. The MFT shouldalways be mindful of the cyclic nature of grieving.

Exploring InterventionsThere is an abundance of confusing and contradictory information on interventions for chil-

dren with autism. Instead of relying on doctors, school personnel, or other professionals outsidethe family, the MFT can encourage the family to have discussions and remain proactive about thedifferent types of interventions. Consider the following example: the mother has heard variouscelebrities speak highly of particular diets and how those diets helped their children with ASD.The father is very skeptical and is also concerned that they do not have a plenty of money to tryevery intervention available. The MFT can help the family evaluate the pros and cons of particu-lar treatments because he or she may be less prone to treatment bias as the MFT is generally not adirect service provider for the child with ASD. Furthermore, MFTs may have a unique under-standing about how an intervention might work within a certain family environment. If the familyhas a child with severe problem behaviors, medication in conjunction with ABA might be the bestmethod of intervention. However, the father might be skeptical as he has heard some people speaknegatively about ABA while the mother is against medication. However, the school system has anexcellent reputation in producing results with children with ASD. The MFT can help the couplenot only talk about their options, but also highlight the emotional aspect of making a decision.The previous scenario suggests an important question, How might the feelings and opinionstoward a particular intervention inuence its effectiveness?

Serving as a Coach MediatorThis role includes tasks like helping a family advocate for themselves. This is vital when a

family has to interact with an entire school system or a team of doctors. The daunting task ofinteracting with the schools or the medical community can lead families to assume a passiverole. An MFT can help coach the family to be more proactive in speaking up for their needs,or if the situation arises become a mediator when the family and another party are in conict.This role may have been very useful for the family in the young children vignette as theystruggled to nd a diagnosis and were further deated as unhelpful advice was provided.

For example, a family and school system may come into conict. The family does notthink the school is doing enough for their child. The MFT can help the family constructivelyexpress their desires (e.g., It seems that Daphne has not made much progress recently. Am Ibeing overly ambitious?). If the family and school continue to remain in conict, it might beof use for the MFT to attend the IEP meeting and focus on nding the best solution for boththe family and school.

Exploring Various Emotions, Feelings, and Belief SystemsThis task is partially dealt with in the grieving process, but also extends to more practical

daily living matters. Family members sometimes simply need permission to talk about what is


happening in the family. The MFT can begin to give this permission. All family members mightbe feeling isolated and disconnected from the outside world and other non-familial social inter-actions, but never have the chance to express themselves because of a strong sense of duty andloyalty to care for the member with autism at any cost as was described in the adulthood vign-ette. It is important that family members be able to share the burden whether it is related tocaretaking responsibilities or simply having the time to be social.

Exploring belief systems needs to be done at the rst-order level as well as at the second.The rst-order level includes situations like how roles are delegated. The MFT can ask ques-tions like: Who takes care of nancial matters? Who takes the child to various doctorsappointments? Who attends IEP meetings? The second-order level includes broader questionslike: How are these roles being delegated? Is it because of the traditional gender roles? Whatare the benets and costs of these role assignments? Other second-order questions can include:What does a lifelong disorder like autism mean to the family? How does life change? Does theworld look different to the family? The MFT can periodically focus on these second-orderquestions, especially as the family enters different developmental stages.

Afrming Family Competence and StrengthsAs has been described throughout this article, having a child with autism can create many

difcult time periods for the family. However, the family does not have to be destined to a lifeof battles and negativities. White and Hastings (2004) suggest that the best support comes frominformal sources such as spouses, extended family members, friends, and religious groups. Allof these sources for support can help reduce both stress and the demands a child with a disabil-ity can have on the family. Some parents report that the overall quality of life for the familycan be improved with participation in recreational activities. Leisure activities with religiousgroups can be especially eective as they provide a social outlet that is often more accepting ofa child with a disability (Blacher, Neece, & Paczkowski, 2005). Hastings and Taunt (2002) sug-gest that even with all the stress, parents still report positive feelings in their life. Hastings andTaunt (2002) summarized ve studies in which parents were asked about the positive impacthaving a child with a disability had on the family. The list included the following: making themost of each day, increased spirituality, increased personal strength and condence, and astronger family marriage. Arming these positive aspects is important. They can provide muchhope that families need. While it is dicult to see the positives amidst the negatives, it is alsovital that MFTs support how families handle their stressors. Ultimately families are the expertson their own experiences. Whether a family has a more optimistic outlook or a pessimistic one,they know how to cope. It is the family therapists job to work within the families abilities andhelp them reach their full potential.

CONCLUSION

There are a wide variety of challenges faced by families living with autism. Although wedo not wish to imply that families with children with varying levels of functioning experiencesimilar stresses or that one intervention approach will work for all families, we do believe thatMFTs can be helpful to families at different life stages. Obviously, the MFT contributions wehave described do not necessarily occur in a linear fashion. The implication then is that familieswill present with periodic needs as they navigate through various life stages and specic issues.This presents some concerns related to continuity and accessibility of care. How will familiesnot only access and locate family therapists with sensitivity and expertise in the area of autism,but also how will they afford family therapy services throughout the extended period of timethey may need or want help? Will they be able to utilize medical insurance to pay a privatepractitioner? If not, will they be able to access state federally funded programs or centers thatwould include marital and family therapy services on a long-term basis?

In cases when the entire family is considered the client, the MFT must not only keep inmind how the severity of the childs disability is impacting the family, but also consider howthe familys response to these various dilemmas are inuenced by their particular social contextin terms of culture, ethnicity and lifestyle. If MFTs want to help families, then it must be done


on the familys terms, within the context of their system of meanings constructed from theirinteractions in the larger social context.

Practitioners must also examine ones own attitudes toward a child with ASD and his orher family. If an MFT has not had any direct experience with such individuals, he or she maynot be able to understand the positive aspects of relationships between parents and childrenwith ASD or between siblings. He or she may also feel inadequate in his or her ability to workwith such families and powerless to change the familys circumstances. However, as wasdepicted in the stories of the two families described in this article, the basic skills of facilitatingfamily dialog that the MFT brings to such encounters can be powerful tools for helpingfamilies adapt and adjust to these challenges. We believe that MFT training programs need toprovide more opportunities for MFTs in training to examine their own attitudes as well asunderstand the unique wants and needs of families living with autism. Although the family maybecome more of an expert about autism than the professionals around them, the developmentof emotional expertise, like learning to live with autism, is a life-long journey. There are bothpractical and emotional sides to making sure a familys child receives the best care possible,and unfortunately, the emotional side is the one that quite often is neglected. In a perfectworld, the emotional side would be pursued with the same vigor as the practical side does. TheMFT can help provide this balance.

REFERENCES

Bagenholm, A., & Gillberg, C. (1991). Psychosocial eects on siblings of children with autism and mental retar-

dation: A population-based study. Journal of Mental Deciency Research, 35, 291307.

Baumeister, R., & Leary, M. (1995). The need to belong: Desire for interpersonal attachments as a fundamental

human motivation. Psychological Bulletin, 117(3), 497529.

Baxter, C. (1989). Investigating stigma as stress in social interactions of parents. Journal of Mental Deciency

Research, 33(6), 455466.

Blacher, J., Neece, C. L., & Paczkowski, E. (2005). Families and intellectual disability. Current Opinion in Psy-

chiatry, 18, 507513.

Block, A., & Hartsig, J. C. (2002). What families wish service providers knew. In R. L. Gabriels, D. E. Hill,

R. L. Gabriels & D. E. Hill (Eds.), Autism: From research to individualized practice (pp. 255278). Philadel-

phia, PA: Taylor & Francis.

Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness in family stress: A comparison

between autism and cystic brosis. Journal of Clinical Psychology, 46, 722730.

Bristol, M. M., & Schopler, E. (1984). A developmental perspective on stress and coping in families of autistic

children. In J. Blacher (Ed.), Severely handicapped young children and their families: Research in review

(pp. 99141). Orlando, FL: Academic Press.

Charles, J. M., Carpenter, L. A., Jenner, W., & Nicholas, J. S. (2008). Recent advances in autism spectrum dis-

orders. International Journal of Psychiatry in Medicine, 38(2), 133140.

Doja, A., & Roberts, W. (2006). Immunizations and autism: A review of the literature. The Canadian Journal of

Neurological Sciences. Le Journal Canadien Des Sciences Neurologiques, 33(4), 341346.

Dumas, J. E., Wolf, L. C., Fisman, S. N., & Culligan, A. (1991). Parenting stress, child behavior problems, and

dysphoria in parents of children with autism, Down syndrome, behavior disorders, and normal develop-

ment. Exceptionality, 2(2), 97110.

Gold, N. (1993). Depression and social adjustment in siblings of boys with autism. Journal of Autism and Devel-

opmental Disorders, 23, 147163.

Gray, D. E. (2002). Ten years on a longitudinal study of families with children with autism. Journal of Intellec-

tual and Developmental Disabilities, 27, 212222.

Happe, F., Ronald, A., & Plomin, R. (2006). Time to give up on a single explanation for autism. Nature Neu-

roscience, 9(10), 12181220.

Harris, G. (2010). Journal Retracts 1998 Paper Linking Autism to Vaccines. The New York Times. Retrieved

October 12, 2011, from http://www.nytimes.com/2010/02/03/health/research/03lancet.html

Hastings, R., & Taunt, H. (2002). Positive perceptions in families of children with developmental disabilities.

American Journal on Mental Retardation, 107(2), 116127.

Howlin, P., & Moore, A. (1997). Diagnosis of autism: A survey of over 1200 patients in the UK. Autism, 1(2),

135162.

Individuals with Disabilities Education Improvement Act of 2004, 20 U.S.C. 1412(a)(1)(A) (2004).

Kanner, L. (1943). Autistic disturbances of aective contact. Nervous Child, 2, 217250.


Mandy, W., & Skuse, D. (2008). Research review: What is the association between the social-communication ele-

ment of autism and repetitive interests, behaviours and activities? Journal of Child Psychology and Psy-

chiatry, 49(8), 795808.

Mansell, W., & Morris, K. (2004). A survey of parents reactions to the diagnosis of an autistic spectrum disorder

by a local service: Access to information and use of services. Autism, 8(4), 387407.

Minshew, N. J., & Hobson, J. A. (2008). Sensory sensitivities and performance on sensory perceptual tasks in

high-functioning individuals with autism. Journal of Autism and Developmental Disorders, 38(8), 14851498.

Muhle, R., Trentacoste, S. V., & Rapin, I. (2004). The genetics of autism. Pediatrics, 113(5), e472e486.

Oberheim, D. (1996). The support needs of adults and children with autism and their carers in Kent. Gillingham,

Kent: Kent Autistic Trust.

Osborn, L. A., & Reed, P. (2008). Parents perceptions of communication with professionals during the diagnosis

of autism. Autism, 12(3), 309324.

Rogers, S. J., & Ozono, S. (2005). Annotation: What do we know about sensory dysfunction in autism? A cri-

tical review of the empirical evidence. Journal of Child Psychology and Psychiatry, and Allied Disciplines,

46(12), 12551268.

Seligman, M., & Darling, R. (2007). Ordinary families, special children: A systems approach to childhood disability

(3rd ed.). New York: Guilford.

van Son-Schoones, N., & van Bilsen, P. (1995). Sexuality and autism: A pilot-study of parents, health care work-

ers and autistic persons. International Journal of Adolescent Medicine and Health, 8(2), 87101.

Stoner, J., Angell, M., House, J., & Bock, S. (2007). Transitions: Perspectives from parents of young children with

Autism Spectrum Disorder (ASD). Journal of Developmental and Physical Disabilities, 19(1), 2339.

Sullivan, A., & Caterino, L. (2008). Addressing the sexuality and sex education of individuals with autism spec-

trum disorders. Education and Treatment of Children, 31(3), 381394.

Volkmar, F., Chawarska, K., & Klin, A. (2005). Autism in infancy and early childhood. Annual Review of

Psychology, 56, 315336.

White, N., & Hastings, R. P. (2004). Social and professional support for parents of adolescents with severe intel-

lectual disabilities. Journal of Applied Research in Intellectual Disabilities, 17, 181190.

Whitman, B. Y. (2008). Family functioning. In P. J. Accardo & P. J. Accardo (Eds.), Capute and accardos

neurodevelopmental disabilities in infancy and childhood: Vol 1: Neurodevelopmental diagnosis and treatment

(3rd ed., pp. 445468). Baltimore, MD: Paul H Brookes Publishing.

APPENDIX

This appendix is intended to aid professionals and families in nding the most helpful anduseful information on Autism Spectrum Disorders. All Web sites are current as of the time ofthis writing.

http://www.afaa-us.orgThis is an advocacy Web site that is devoted to adults with ASD.and includes basic information on autism with links to other resources focusing on assistingadults with ASD nd jobs.

http://www.aspergersyndrome.orgThis Web site focuses on people with Asperger syn-drome and the issues they face.

http://www.autismlink.comContains an extensive database of ASD service providers inthe United States.

http://www.autismspeaks.orgAutism Speaks is a large organization that is devoted toadvocating for individuals with ASD and their families. The Web site contains a wealth ofinformation on autism and how to become active in the ASD community.

http://www.iancommunity.orgA Web site devoted to linking families with researchers inASD. Also contains a wealth of information on the various issues families face in dealing withautism.

http://www.nichcy.orgContains information on special education law in the United States.In addition to federal legislation, theWeb site provides information pertinent to individual states.

http://www.wrightslaw.comA Web site devoted to advocacy and legal information forpeople with disabilities. The Web site also contains an international directory for support out-side the United States.

Attwood, T. (2007). The complete guide to Aspergers syndrome. London, UK: JessicaKingsley Publishers.This handbook focuses on understanding Asperger syndrome and is writ-ten for anyone who is aected by Asperger syndrome.


Frith, U. (1991). Autism and Asperger syndrome. Cambridge, UK: Cambridge UniversityPress.A compilation of theoretical papers on autism and Asperger syndrome and includes atranslation of Hans Aspergers original paper Autistic psychopathy in childhood. This book isgeared more for professionals.

Gabriels, R., & Hill, D. (2002). Autism: From research to individualized practice. Philadel-phia, PA: Taylor & Francis.This book provides a thoughtful and concise guide for practi-tioners working with children with ASD.

Gabriels, R., & Hill, D. (2007). Growing up with autism: Working with school-age childrenand adolescents. New York, NY: Guilford Press.As the title suggests, this book focuses onthe issues pertinent to later childhood and adolescence.

Grinker, R. (2007). Unstrange Minds: Remapping the world of autism. New York, NY:Basic Books.Grinker is an anthropologist and a parent of child with autism. This bookprovides a historical and cultural perspective of autism.

Harris, S., & Weiss, M. (2007). Right from the start: Behavioral intervention for young chil-dren with autism. Bethesda, MD: Woodbine House.This book is for families with young andnew diagnosed children with ASD. Aids families in setting up a home-based early interventionprogram. Also contains personal reections from parents.

Hollander, E., & Anagnostou, E. (2007). Clinical manual for the treatment of autism.Arlington, VA: American Psychiatric Publishing, Inc.Provides a concise discussion on autismand its treatment. This book is geared more toward professionals.

Howlin, P. (2004). Autism and Asperger syndrome: Preparing for adulthood (2nd ed.).Psychology Press.This book oers a review of what is currently known about ASD inadulthood. This book also serves as a practical guide for families and people with ASD as theyreach adulthood.

Jacobson, J., Foxx, R., & Mulick, J. (2005). Controversial therapies for developmentaldisabilities: Fad, fashion and science in professional practice. Mahwah, NJ: Lawrence ErlbaumAssociates Publishers.This book discusses controversial treatments with autism. Included aresuggestions for professionals to assist families in making informed treatment decisions.

Maurice, C. (1994). Let me hear your voice: A familys triumph over autism. BallantineBooks.This book provides a personal account of one familys struggles and triumphs withautism.

Myers, S., Johnson, C., & the Council on Children With Disabilities (2007). Managementof children with autism spectrum disorders. Pediatrics, 120(5), 11621182.This articleprovides a concise description on the various treatments for autism.

Oft, P. (2008). Autisms false prophets: Bad science, risky medicine, and the search for acure. New York: Columbia University Press.This book provides a concise and readablehistory of the autism vaccine controversy.


Copyright of Journal of Marital & Family Therapy is the property of Wiley-Blackwell and its content may notbe copied or emailed to multiple sites or posted to a listserv without the copyright holder's express writtenpermission. However, users may print, download, or email articles for individual use.

Documents

ContentServer (22)