Journal of Marital and Family Therapy

doi: 10.1111/j.1752-0606.2011.00265.x
June 2012, Vol. 38, No. s1, 211226

WORKING WITH FAMILIES LIVING WITH AUTISM:

POTENTIAL CONTRIBUTIONS OF MARRIAGE AND
FAMILY THERAPISTS
Jason Neely, Ellen S. Amatea, Silvia Echevarria-Doan, and Tina Tannen
University of Florida

This article introduces marriage and family therapists (MFT) to some of the common
issues faced by families that have a child with autism spectrum disorder (ASD). First,
autism is dened and common myths surrounding it are discussed. Next, relational
challenges are presented that families report experiencing during early childhood through
the elementary school years, adolescence and the transition into adulthood, and the later
years of the family life cycle. Real-life stories are included to illustrate the potential
contributions 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 years
of a childs life and is the result of a neurological disorder that affects brain functioning. Autism negatively affects the childs social interactions, communication skills, and pretend or imaginative play. The impact on the family of a child receiving an autism diagnosis can be
devastating both socially and emotionally. Not only do parents with a child with autism struggle to gain a clear diagnosis and secure appropriate treatment for their child, but they must
also deal with the disappointment of having a child who does not respond to their attention
and care in a typical fashion. Furthermore, the childs behavioral limitations can dominate
family life and restrict the familys outside activities.
While there is a substantial body of literature focused on treatments for individuals with
autism, there are few scholarly works that depict the experiences of the families. Moreover, the
available literature typically has focused on how the family can help their child overcome his or
her decits. We believe the emotional issues that family members face in living with autism
should be addressed with the same vigor as the logistical issues of getting treatment for a child
with autism. We also believe that much can be learned from the families themselves about the
emotional issues they face and how they deal with them. We hope to provide a more in-depth
picture of the issues faced by a family living with a child with autism by including statements
from parents of children with autism that we have encountered professionally and personally
throughout the years. Names are not used, and specic details have been altered to protect
their identity. In this article, we rst dene autism and some of the myths surrounding it. We
then describe the challenges that families report experiencing during three major periods of
their childs life: (a) early childhood through the elementary school years, (b) adolescence and
the transition to adulthood, and (c) autism in adulthood and the later years. Real-life examples
are 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 colleagues at the same university who came together to write about families that have a child with
autism 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:
jkneely@coe.u.edu

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is a doctoral student who has worked extensively with children with autism and their families
utilizing applied behavior analysis (ABA) methodology. Upon entering graduate school, he
shifted his focus to the family and is pursuing a degree in Marriage and Family Therapy. He
also plans to complete his dissertation on families with a child with autism. The second and
third authors collaborated on focus group research that explored the experiences and needs of
families with autistic children (from which several of the quotes by parents for this article were
derived). As faculty in a marriage and family therapy program, they also drew upon their
knowledge about family therapy practice in terms of roles that MFTs can take with families of
children with autism. On a more personal note, the second author has also drawn from her
own experience with a younger brother who lived through adulthood with Asperger syndrome
during a time when the diagnosis of autism spectrum disorder was not well known. The fourth
author is a PhD graduate of our program who is currently clinical faculty at the university
counseling and wellness center, and mother of a young adult son who was diagnosed with autism 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 have
difculty with social interactions (e.g., no interest in playing with others or understanding of
reciprocity in interactions with other children). Second, communication is often severely
impaired, and in some cases, verbal skills are non-existent. A third feature of autism is stereotypic behaviors (e.g., hand apping, or intense body rocking), along with restricted interests and
activities. Because autism, or autistic disorder, is in fact one disorder within a range of autistic
spectrum disorders (ASD), children can demonstrate varying capabilities. On the higher functioning end of the spectrum (e.g., Asperger syndrome), a child may have many substantial communication skills, including a large verbal repertoire; yet, his or her social interactions may
seem a bit odd. On the lower functioning end of the spectrum, a child may be non-verbal and
have very few daily living skills.
The DSM-IV places autism in the broad, umbrella category of Pervasive Developmental
Disorders (PDD). PDD in children are characterized most notably by severe delays in social
and communication skills. Autistic disorder, or autism, is one disorder within the range of
ASD. This group includes autism, Asperger syndrome, and Pervasive developmental disordernot otherwise specied (PDD-NOS). (There are two additional PDD diagnoses not associated with autism: Rhetts syndrome and Childhood Disintegrative Disorder.) For the
remainder 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 now
known that there is a strong genetic component to autism, with a strong hereditability factor
among family members (Muhle, Trentacoste, & Rapin, 2004). Additionally, because there are
three distinct features of autism (i.e., social deciencies, communicative decits, and stereotypic
behaviors and restricted interests), some researchers now believe that each feature of autism is
a 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 Misinformation
Despite 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 inuence
both families and their autistic child. When working with families, MFT practitioners must be
careful not to perpetuate these myths or provide unhelpful advice. The following are some of
the most common myths about autism:
Autism is caused by vaccines received in infancy: Although this myth has received an
abundance of media attention lately, researchers have found no link between vaccines
and autism (Doja & Roberts, 2006). In fact, the medical journal that rst published a

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paper linking vaccines and autism has issued a full retraction (Harris, 2010). There is
no known denitive cause for autism.
Autism is the result of some emotional distress experienced by the mother during pregnancy or as a result of bad parenting: A denitive cause for autism is unknown, as there
is a complex interplay between genetics and other environmental factors. Autism occurs
without emotional distress or bad parenting. It is imperative that parents understand
no one is to blame for their child having autism.
A child with autism will outgrow current problem behaviors: Autism is a life-long disorder
with no cure. A child with autism will become an adult with autism. It is harmful to
suggest that a child will grow out of problem behaviors reported by a parent. While
elimination of problem behaviors might be unattainable, there are eective interventions available to reduce problem behaviors, as well as teach daily living skills to help a
child with autism lead a more normal life.
A person with autism cannot be educated: One of the most eective interventions for
autism is educational in nature. Persons with autism need highly individualized educational environments in which they can receive both life skills and occupational skills
training.
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, people
with autism are capable of aection and emotions. People with autism are not as
responsive to typical social cues, so the person with whom they are interacting must
show more understanding in the interaction. The lack of response to normal social cues
does not mean there is an absence of typical human emotions and feelings. There is evidence that people with autism experience various forms of touch and contact dierently
than 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 may
come across when working with a family that has a child with autism. It is beyond the scope of
this article to provide comprehensive information about autism; however, it is crucial for practitioners to be informed on the key issues in autism. The more accurate the information a practitioner has, the better equipped he or she is to help a family get the appropriate services needed
for 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 certainty 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 siblings of children with autism spectrum disorders report experiencing more stress and depression
than do parents and siblings of children who are normally developing or even those who have
other disabilities (Bagenholm & Gillberg, 1991; Bouma & Schweitzer, 1990; Dumas, Wolf,
Fisman & Culligan, 1991; Gold, 1993; Gray, 2002). Moreover, parents with a child with autism
have 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 autism
has not dierentiated among families with children at varying levels of functioning. Certainly, a
child at the lower functioning end of the autism spectrum may place greater demands for care
on their family than that of a child at the high functioning end of the autism spectrum. However, we have a limited understanding as to how dierences in the autistic childs functioning
aect families. In the following sections, we describe certain stresses faced by families at three
major periods in their childs life: (a) early childhood and the elementary school years, (b) adolescence and the transition to adulthood (Whitman, 2008), and (c) ASD in adulthood and the
later years. Additionally, we do not wish to imply that families with children with varying levels
of functioning experience these stresses in similar ways, or that one intervention approach will
work for families facing such dierent demands.
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Early Childhood Through the Elementary School Years

In 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 child
with ASD is in elementary school. We then present a real-life case depicting how one family
was assisted in responding to some of these issues.
The concerns families face during their childs infancy and early childhood include the following: (a) identifying that the child has a problem and gaining a clear diagnosis, (b) coping
with family members emotional reactions to the disorder, (c) helping families make treatment
decisions, and (d) developing a support system. We then describe three additional circumstances
families 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 report
positive experiences, most parents express frustration with the diagnostic process, (Hastings &
Taunt, 2002; Osborne & Reed, 2008). However, one needs to be mindful that the symptoms of
children with ASD vary in severity. In cases of severe ASD symptomatology, most symptoms
appear 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., Asperger
syndrome) may be much more dicult to diagnose and may not be identied as having ASD
until 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 an
early sense of a problem and sought help from their medical practitioner when their child was
as young as 2 years of age. Parents often reported two distinct time frames at which they recognized that something was not right with their child during infancy and the early childhood
years. The rst was at the time of the childs birth or soon thereafter. The second was around
23 years of age, when their previously typically developing child experienced a sudden regression. However, there are still many children who are not diagnosed until they are much older
and are enrolled in schools. This can be especially dicult for family members as years pass
and 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 than
severe impairments in their communication and social interactions, it can often be difcult for
parents to determine whether their child actually has some form of autism. Particularly when
children demonstrate high levels of functioning (such as with Asperger syndrome), there may
be disagreement between the parents, other family members, and even professionals about the
very existence of an impairment. Not only do these conicts have ramications for parents
relationship with each other and with their child, but the experiences family members have with
professionals before the problem is clearly identied can often generate strong emotions such as
anger, 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, numerous
researchers have documented that a major source of stress for many parents of children with
suspected 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 badly
handled. While we are not suggesting that MFTs become skilled in diagnosing ASDs, we do
suggest that MFTs become knowledgeable about autism (this article along with the Appendix
may 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 is
very dicult to diagnose. Ambiguity is a common theme in families reports about getting a
diagnosis. It is quite possible that families will need to seek a second or third opinion, and each
doctor may provide a dierent opinion. MFTs are well qualied to support families as they
struggle with this dicult task. The MFT can also help the family begin the process of examining
how autism is aecting their family and deciding how to handle the high level of ambiguity
inherent in getting a diagnosis and deciding on a treatment regimen for their child.
Understanding family members emotional reactions. For parents whose child receives a
diagnosis early in life, this realization can be extremely difcult as many hopes and dreams for
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their childs future are dashed. The idea that something is not right with ones child is difcult
to handle. Although the parents might know something is not right with their child, it can be
quite difcult to act on that knowledge. When the doctor conrms their idea that something is
wrong with their child, parents and other family members can respond to this news with a wide
variety of emotions and coping strategies. Some parents might need a safe and secure space to
begin the process of mourning. Others might need afrmation that it is okay to cry and to
mourn the loss of their hopes and dreams for their child and to be fearful as to what the future
may hold.
While each family situation is unique, parents who initially had a typically developing child
and then saw a regression may experience elevated levels of self-blame, thinking that they did
something wrong to cause these newly emerging problems with their child. Moreover, these
feelings of blame and guilt may remain unexpressed owing to family norms. Left unacknowledged these feelings can negatively impact the relationships that family members develop with
each other and with the professionals that work with their child. For example, when told by
her pediatrician that her son was autistic, one mother commented:
Immediately the guilt comes in. What did I do? I went over my pregnancy. Could I
have prevented this? Should I have stopped work sooner? Maybe it was a medication I
was 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 her
child developing autism, she also believed that she should devote herself to doing everything
possible to help her child improve. How might these feelings and beliefs affect her willingness
to 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 caring
for her other non-disabled children?
Humans are social beings for whom there is a strong, fundamental drive to form relationships of many kinds (Baumeister & Leary, 1995). Yet, children with autism lack the capacity to
form 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. These
parents 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 the
diculty in interacting with such a child. It is important for all family members to have the
space to discuss censored thoughts, feelings, and emotions and the potential impact they have
on family relationships. The following are some questions family members may consider: How
does one avoid creating a family life that is completely centered on the child with autism? Can
the father express his frustrations with the lack of sexual intimacy in the couple? Does the
mother have the space, or energy, to disclose how she feels alone in parenting a child with autism? 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 an
MFT provide the space for a family to grieve or mourn the loss of hopes and dreams for their
child. Quite often, there is a tendency for family members to become consumed with accessing
resources 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 feelings
and instead decide to soldier on to get things done. Although it is important to help the
family mobilize needed resources, family members may need a space to examine their reactions
to getting such a diagnosis about their child. Unacknowledged reactions and emotions can
greatly impact treatment decisions and outcomes. Early childhood is also a time when basic
beliefs, meanings, and understanding about autism are formed. In the midst of this initial disarray, a family session can be a safe space for all family members to depart from their normal
routines and to bring up issues that get censored in daily life. These unspeakable topics may
range from concern that a sibling is being neglected, to nancial matters, to emotional and sexual intimacy issues.
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Helping families make treatment decisions. In order for families to make effective decisions
about treatment for their child, they need sufcient information and a clear understanding of
that information. In addition, families often need guidance in making decisions about their
childs treatment or schooling for ASD. Yet, in a series of 15 focus groups conducted by
Osborn and Reed (2008) with parents of preschool, elementary, and secondary aged children
with 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, We
were left with this title and no information at all (Osborn & Reed, 2008, p 314).
Moreover, families are often inundated by contradictory and controversial information
about the causes of and possible cures for autism and may be encouraged to enroll their child
in treatments that overwhelm the familys economic and emotional resources. While family
therapists are not expected to know how to provide various treatments, it is highly benecial
for them to be knowledgeable about the relative eectiveness of dierent interventions. Some
treatments (e.g., chelation and certain prescribed diets) have not compiled much evidence of
their eectiveness, yet are marketed as cures to autism. While it is important that the family
therapist provide frank and thoughtful sharing of their concerns about various treatments, one
obviously does not want to undermine a familys hopeful optimism and willingness to try a
treatment that might help their child (Whitman, 2008). However, there are a number of interventions such as applied behavioral analysis or medication that have provided strong evidence
as to their eectiveness. The appendix contains a list of resources that can help professionals
and families make educated decisions about various treatment options.
In addition, the family therapist will want to ensure that families have an awareness of the
available intervention resources in their community for families (e.g., respite care) and the legislation supporting access to these resources. In the United States, there exists a body of disability and prevention-related early intervention federal legislation, primarily that of the
Individuals with Disabilities Act (IDEA). (See the international directory at http://www.wrightslaw.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 impacted
substantially by having a child with autism. Baxter (1989) suggested that parents are most
willing to take their child with a disability to gatherings involving family and friends and least
willing to take them to places involving people with whom they are not close. Certain social
situations that parents felt particularly stressful were the following: (a) formal social occasions
where the child does not conform to norms; (b) other persons homes where coping with the
childs 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 parents (and siblings) may experience, many families are able to achieve some degree of normalization if they have adequate social support. Bristol and Schopler (1984) found that families who
perceived 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. Support
groups consisting of other parents like themselves are often eective forms of support for parents when their children are young and newly diagnosed.
Families often report that they experience major difculties when their child with autism
enters formal schooling. Three quandaries experienced by families during this time are (a) creating 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 resistance
to change, total chaos can ensue when a childs entire social environment and routines are modied 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 intervention services are upset when their child moves into a public school setting. Not only does this
transition 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 her
family. An MFT can be of benet to the family at this time by assisting them in anticipating
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the need to develop new routines and new family roles. For example, now that all the children
are in school, the mother may decide to reenter the work force to ease the nancial burden on
the family. With such a change, would it now make more sense for the father to get the children ready for school as he has less distance to commute?
Developing relationships with new service providers. A family can go from working with a
few specialists in an early intervention program to having to deal with a wide variety people in
and outside of the school system (ranging from a principal, to a paraprofessional, to people in
the county or district ofce) who have varying levels of understanding and interest in serving
the needs of children with autism. One mother recalled her experiences of feeling that the professionals working with her child were questioning her competency as a parent.
Everybody hits you with the negatives. The whole meeting was about what my child
couldnt do. I just felt that I was being told that I really made a mistake when I had
this 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 discuss
parentprofessional relational issues that might be created when they are expected to shift from
an established routine of having a speech therapist visit their home twice a week, to having professionals from a school system suggest different services. Additionally, a parent may need help
in negotiating what may feel like a bureaucratic school system that focuses on the child without
much consideration for the rest of the family system. The MFT has an excellent skill set to help
families examine their ways of communicating and making decisions with outside professionals
as well as within the family.
Advocating for appropriate services. How might a family respond constructively if they feel
that the school is not doing enough for their child? Federal legislation in Part B of IDEA species
the rights for services for children with disabilities ages 321. Currently, Part B is implemented primarily through public school systems with an individualized education plan (IEP). Unfortunately,
many families discover that because IDEA is universally underfunded, there are wide variations
across school districts in the extent of services provided. As a result, many families become painfully aware that their childs needs may not be met by what is offered within their school districts
programs. In these cases, the law provides that the district must nance sending the child to
another 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 school
staff. 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 in
assisting families in advocating for services for their child (see Appendix). In addition, an MFT
can assist parents in deciding how they might respond constructively to the sta at their childs
school. A parent might need to consider the nature of the message his or he combative behavior is sending to school sta in an IEP meeting. Alternatively, parents might need to investigate why there is no follow through in implementing the treatment plan developed in their
childs IEP meeting Coaching a family in dealing with service providers and helping them
become more aware of how they are inuencing their interaction with service providers are
important roles that an MFT might play.
A Familys Story: Young children
The 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 child
with 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 parent, I viewed these problems as evidence of my incompetence. When his language
development was delayed and we had him evaluated at age 3, the specialist recommended parenting classes that only served to conrm my self-doubt. My husband and
I struggled through the rst few years of our sons elementary school, sorting through
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recommendations from various therapists about school placements without a clear

diagnosis of his problem (he was not diagnosed with autism until age 13). Because he
was on the high functioning end of the spectrum, our concerns were met with minimization by his teachers during those early years of school. After all, he could spell beautifully! However, his social and expressive language decits were not addressed. We
just 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 the
responsibility to help him yet not knowing how. In addition to all of this, one day I
noticed his younger brother inch as he walked by. I began to watch more carefully
and noticed that he would ing his arms at his younger brother seemingly absentmindedly, yet actually hitting him at unpredictable times. I had taken for granted that my
younger son was ne because he coped quietly and beautifully in school, among his
friends, and in our family life. But our younger sons reactions to his older brother
worried 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 our
younger son to have a voice in our family. It was painful to hear how little attention he
felt he got in the face of his brothers needs. It was terribly important to me to be sensitive to all of my children, so to hear about my failure was not easy. However, the therapist was gentle with me and her simple questions to my son and his answers were like a
lightning 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 of
my children. After that my husband and I made special plans to spend individual time
with our younger son and to change the way we managed their conicts. We were more
sensitive when our younger son brought friends home to monitor the elders interference
in 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 their
childs autism. Through facilitating open and safe conversations, the MFT helped the younger
sibling express previously hidden feelings about his place in the family and how he was
impacted by their child with ASD. In turn, the MFT also helped the parents to hear this child
and to consider how they wished to reorganize themselves.
Additionally, an MFT could have been useful to this family as they struggled to nd an
explanation for the difculties they knew were occurring, yet no one else acknowledged. The
MFT could benet the family by listening to their struggle and offering suggestions of avenues
to explore. By listening to the family and not minimizing their struggle, the MFT could support
the familys search for answers, avoid perpetuating myths and misinformation about potential
causes, and avoid considering unhelpful solutions.
Adolescence and the Transition to Adulthood
As 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 with
the issues of early adulthood to emphasize the importance of helping families prepare during adolescence for their childs transition to adulthood. Common difculties that families experience
during this life stage includes the following: (a) handling adolescent physiological changes, (b) preparing for adulthood, and (c) dealing with changing nancial and logistical supports.
Handling adolescent physiological changes. Families often face new concerns when their
child becomes an adolescent. These include the childs increased physical size and the emergence
of sexuality. The effectiveness of individual interventions and treatments needs to be constantly
monitored by the family throughout the childs life. However, this becomes especially important
when 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 an
adolescents behavior as hormonal levels uctuate. This is especially true with adolescents with
autism. Many problem behaviors can emerge in adolescence as new feelings and sensations are
discovered (van Son-Schoones & van Bilsen, 1995). Safety also becomes a concern as problem
behaviors develop, or persist, but now the adolescent is physically bigger and stronger.
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In addition, the emergence of sexuality in adolescents with ASD can add another layer of
complexity to a familys already stressed life. Because people with ASD often have difculties
with social interactions and cues, this can result in a lack of awareness of social norms regarding 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 inappropriate
sexual 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 the
house. As I turned the corner I saw our son sitting at the computer naked with some
nudy sites on the screen. I was absolutely frozen, yet all these emotions came
rushing out. I then began to panic. What happened to our child? I couldnt ever
imagine him doing such things. What now? My gosh! What if this happened at
school?
A family therapist can help a family decide how they wish to handle the emergence of
inappropriate sexual behaviors in their adolescent with ASD. This may involve having parents
develop realistic goals for controlling their adolescents inappropriate sexual behavior. For
example, in behavioral terms, masturbation is an automatically reinforcing behavior. That is,
an adolescent engages in the behavior because it is stimulating intrinsically. Parents may want
the unrealistic goal to reduce the occurrence of the inappropriate behavior to zero. An MFT
may assist them in developing the more attainable goal of shaping this behavior to occur only
in private rather than public places.
In adolescence, the MFT should also focus on the familys overall functioning. How is the
family adapting to changes in adolescence? Does the family sense a shift in educators philosophy when the adolescent enters middle school or high school? Of note, there is often more of
an 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 the
school system? Is the family as a whole becoming more isolated as the child ages? Are individual 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 launching
their child into adulthood to become functional citizens in the world. Quite often, this does not
occur with a family that has a child with autism. Psychologically, this can be especially difcult
for parents as hopes and dreams that were lost (and yet not grieved for) in early childhood resurface as the fear that their child will not reach full independence becomes realized. As in other time
periods throughout the family life cycle, the family therapist can be a crucible of safety in which
the family can navigate difcult, unacknowledged, and unspoken emotions. The MFT can help
families to anticipate their childs transition into adulthood and to begin preparing early during
the adolescent years. For example, does the adolescent with ASD have opportunities for socializing outside the family? Some parents of high functioning young adults with autism who have been
in an inclusive setting in school create opportunities for social inclusion for their children after
they have nished school through structured employment or advanced education. Other families
develop opportunities for social inclusion by arranging living situations and locating roommates
for their adult children with ASD. Questions the MFT can ask as the family helps their child prepare for adulthood might include the following: How does the family see itself now? How well
does the family evaluate itself on how they live with autism? What have they done well? What
might the family like to do differently to move forward?
Preparing for changing nancial and logistical support. Typically, at the age of 21 (and
sometimes 22), most school systems cease providing services for families that have a child with
autism. The sudden lack of mandated services for autistic individuals past about 21 years of
age 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 various
sources with funding aids from federal and state governments. However, once the child reaches
about the age of 21 or 22, all services have to be paid for by the family. Moreover, many of
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the logistical concerns that the school helped manage (e.g., identifying needed services and
arranging for service providers) are now the sole responsibility of the family.
ASD in Adulthood and the Later Years
Most families with an adult family member with autism continue to experience substantial
economic and social stresses. One key issue involves the demands for family reorganization
brought on by parental death. We describe this issue and then present a real-life story depicting
how one family was assisted by an MFT in responding to this challenge.
Revaluating family roles. As parents and other primary caregivers age and anticipate their
death, key questions emerge concerning what new arrangements need to be made for caretaking of
the family member with ASD and who will have a voice in making those decisions. Questions that
the 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 family
expected to take over care giving or might there be other options for caretaking that the family may
wish to explore? How does one determine the most appropriate placement? For example, does the
adult 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 the
family have the nancial resources to support this living arrangement? More importantly, how will
these decisions be made? Who will have a voice in making these decisions and what kind of feelings
and emotions are evoked when these questions are raised?
There is relatively little information on adult siblings of persons with ASD and their
experience of burden, guilt, and fear. Although some adult siblings live lives relatively free from
excessive anxiety and fear, others do not (Seligman & Darling, 2007). These individuals often
worry about how they will care for their sibling with ASD after their parents death. Other siblings may experience survivors guilt owing to their healthy lives contrasting sharply with
that of their sibling with ASD. Moreover, how the individual with ASD responds to being
cared for by their sibling may also create tensions. The MFT can play an important role for
the family at this stage by creating a context where family members can discuss their feelings
and concerns in an open manner.
A Familys Story: Preparing for Parental Loss
Caregiving for an adult with autism can be extremely challenging. And like the initial diagnosis of autism, the family may rarely be prepared for it. The following account depicts the
instrumental role that an MFT played in helping family members learn to express their concerns and plan together for the care of their adult sibling with ASD.
My family has struggled to understand and support my brother with Asperger syndrome for a very long time. When he was growing up we knew that he was very intelligent yet fairly insensitive socially, however we had never heard of Aspergers. It was
not until he lived with my husband and me for a semester when he went to college that
I began to notice the rigidity of his thinking, his peculiar obsessive behaviors, and his
inability to read social cues and engage in reciprocal social conversation. However, I
did not have a name or category for these behaviors; I just knew he was struggling. I
arranged for him to see a counselor at the college to talk about his academic struggles
and difculties making friends, but that contact was unsuccessful. The counselor
reported 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 to
see a counselor due to his struggles to get launched. After a few sessions, each of
these counselors noted that he was not particularly motivated to change his behavior
and recommended termination. Although my brother is brilliant, he never made it
through college or any job training program (although attempted several), has never
successfully 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 all
of his life, and seemed to expect to always be taken care of by her.

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I recently heard about Aspergers in a newspaper article, and made an appointment for
my brother at a local autism center. This appointment resulted in a diagnosis of
Aspergers. It was the rst time in 30 years that I felt some sense of comfort that
maybe there was a reason that all the things my family had tried to do for or with my
brother had not worked. It also seemed to take the pressure off of me and my mother
to gure out what we needed to do to get him launched. However, my family also
recognized that we were all getting older. We needed to plan together for what would
happen when my mother died.
Every time we tried to talk to my brother about what he might do after our mother died
he 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 was
recommended by the autism center even though I worried about how honest I could be
about my thoughts and feelings about my brother. When we met with the family therapist, I was relieved to discover that neither did the family therapist automatically assume
that I (or my sister) should care for my brother, nor did she force us to reveal how we felt
about having my brother live with us. Instead the family therapist slowed us down and
got my brother to talk about his life and who he was as well as allowing us to tell our
stories 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 the
expression of many of the censored and unspoken thoughts and feelings that occurred over the
50-year course of the brothers life. Through facilitating open and safe conversations, the MFT
helped members of this family see the person with ASD as not just someone for whom they felt
responsible, but as someone who had his own hopes and strengths. Through creating a safe
space, the MFT allowed the brother to express himself and his desire to live independently, and
to 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 they
had played over the years that might have inadvertently reinforced the brothers lack of initiative. For instance, the mother and two sisters may have been a close-knit and over-responsible
subunit with the brother as an outsider. Did the brother not assume responsibility for his own
welfare, or did the mother and sisters inadvertently discourage him from assuming any responsibility for his own care? The MFT might also have been helpful to the family in exploring living arrangements and options before the mother dies. They might need to consider whether a
group home was possibility or whether it might be feasible to purchase a house with other
families with a child on the higher functioning side of autism and have a house parent to
help provide structure and guidance. Exploring these options with the family would not only
provide family members with the sense that they are not alone, it could also provide the adult
child with ASD (if he or she has the ability) with an opportunity to take a more active role in
planning his future.

POTENTIAL MFT CONTRIBUTIONS

As discussed in this article, raising a child with autism presents many challenges throughout the life span. Marriage and family therapists have a unique skill set to offer families exploring how they might live with autism. In the previous sections, we have alluded to several key
roles we believe that an MFT might fulll.
Facilitating Family Grieving
The 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 and
his autism diagnosis. The MFT can mediate by helping the couple understand that everyone
grieves differently. The MFT can further facilitate the couple by encouraging them to talk
about why the husband wants to talk and the wife remains quiet. For example, it is discovered
that the couples family of origin (F.O.O.) has a great inuence on how they grieve, in particular the wife who has experienced great loss throughout her life. The wife has never had the
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opportunity speak about any of her losses as everyone in her F.O.O. grieves in silence. The
MFT helps this particular couple by balancing sessions with silence for the wife, and ASD
related conversations for the husband. However, if the wife expresses a desire to talk more
about her loss, the MFT can help as well by asking questions that focus on feelings. The MFT
can also encourage the husband to ask feeling-related questions in a respectful manner to help
further the conversation outside of session.
Other examples of differences in grieving are when one partner might tend to a garden
while the other stays up late reading. A sibling might need the space to create art. A grandparent might simply need the opportunity to share in caretaking duties. Whatever the situation
may 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 impossible to grieve all at once. The child with autism goes through many developmental stages, and
there is grieving to be done at each stage. For example, parents might grieve for the toddler
who does not play with others, the elementary school child who is not invited to parties or to
spend the night out, or the teenager who is not working toward independence. Grief happens
throughout the familys life and not necessarily in any particular order. The MFT should
always be mindful of the cyclic nature of grieving.
Exploring Interventions
There is an abundance of confusing and contradictory information on interventions for children with autism. Instead of relying on doctors, school personnel, or other professionals outside
the family, the MFT can encourage the family to have discussions and remain proactive about the
different types of interventions. Consider the following example: the mother has heard various
celebrities 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 try
every intervention available. The MFT can help the family evaluate the pros and cons of particular treatments because he or she may be less prone to treatment bias as the MFT is generally not a
direct service provider for the child with ASD. Furthermore, MFTs may have a unique understanding about how an intervention might work within a certain family environment. If the family
has a child with severe problem behaviors, medication in conjunction with ABA might be the best
method of intervention. However, the father might be skeptical as he has heard some people speak
negatively about ABA while the mother is against medication. However, the school system has an
excellent reputation in producing results with children with ASD. The MFT can help the couple
not 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 opinions
toward a particular intervention inuence its effectiveness?
Serving as a Coach Mediator
This 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 of
interacting with the schools or the medical community can lead families to assume a passive
role. 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 they
struggled 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 not
think the school is doing enough for their child. The MFT can help the family constructively
express their desires (e.g., It seems that Daphne has not made much progress recently. Am I
being overly ambitious?). If the family and school continue to remain in conict, it might be
of use for the MFT to attend the IEP meeting and focus on nding the best solution for both
the family and school.
Exploring Various Emotions, Feelings, and Belief Systems
This 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
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happening in the family. The MFT can begin to give this permission. All family members might
be feeling isolated and disconnected from the outside world and other non-familial social interactions, but never have the chance to express themselves because of a strong sense of duty and
loyalty to care for the member with autism at any cost as was described in the adulthood vignette. It is important that family members be able to share the burden whether it is related to
caretaking 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 questions like: Who takes care of nancial matters? Who takes the child to various doctors
appointments? Who attends IEP meetings? The second-order level includes broader questions
like: How are these roles being delegated? Is it because of the traditional gender roles? What
are 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 the
world look different to the family? The MFT can periodically focus on these second-order
questions, especially as the family enters different developmental stages.
Afrming Family Competence and Strengths
As 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 life
of battles and negativities. White and Hastings (2004) suggest that the best support comes from
informal sources such as spouses, extended family members, friends, and religious groups. All
of these sources for support can help reduce both stress and the demands a child with a disability can have on the family. Some parents report that the overall quality of life for the family
can be improved with participation in recreational activities. Leisure activities with religious
groups can be especially eective as they provide a social outlet that is often more accepting of
a child with a disability (Blacher, Neece, & Paczkowski, 2005). Hastings and Taunt (2002) suggest that even with all the stress, parents still report positive feelings in their life. Hastings and
Taunt (2002) summarized ve studies in which parents were asked about the positive impact
having a child with a disability had on the family. The list included the following: making the
most of each day, increased spirituality, increased personal strength and condence, and a
stronger family marriage. Arming these positive aspects is important. They can provide much
hope that families need. While it is dicult to see the positives amidst the negatives, it is also
vital that MFTs support how families handle their stressors. Ultimately families are the experts
on 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 and
help them reach their full potential.

CONCLUSION
There are a wide variety of challenges faced by families living with autism. Although we
do not wish to imply that families with children with varying levels of functioning experience
similar stresses or that one intervention approach will work for all families, we do believe that
MFTs can be helpful to families at different life stages. Obviously, the MFT contributions we
have described do not necessarily occur in a linear fashion. The implication then is that families
will 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 families
not 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 time
they may need or want help? Will they be able to utilize medical insurance to pay a private
practitioner? If not, will they be able to access state federally funded programs or centers that
would 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 in
mind how the severity of the childs disability is impacting the family, but also consider how
the familys response to these various dilemmas are inuenced by their particular social context
in terms of culture, ethnicity and lifestyle. If MFTs want to help families, then it must be done
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on the familys terms, within the context of their system of meanings constructed from their
interactions in the larger social context.
Practitioners must also examine ones own attitudes toward a child with ASD and his or
her family. If an MFT has not had any direct experience with such individuals, he or she may
not be able to understand the positive aspects of relationships between parents and children
with ASD or between siblings. He or she may also feel inadequate in his or her ability to work
with such families and powerless to change the familys circumstances. However, as was
depicted in the stories of the two families described in this article, the basic skills of facilitating
family dialog that the MFT brings to such encounters can be powerful tools for helping
families adapt and adjust to these challenges. We believe that MFT training programs need to
provide more opportunities for MFTs in training to examine their own attitudes as well as
understand the unique wants and needs of families living with autism. Although the family may
become more of an expert about autism than the professionals around them, the development
of emotional expertise, like learning to live with autism, is a life-long journey. There are both
practical 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 perfect
world, the emotional side would be pursued with the same vigor as the practical side does. The
MFT can help provide this balance.

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APPENDIX
This appendix is intended to aid professionals and families in nding the most helpful and
useful information on Autism Spectrum Disorders. All Web sites are current as of the time of
this 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 assisting
adults with ASD nd jobs.
http://www.aspergersyndrome.orgThis Web site focuses on people with Asperger syndrome and the issues they face.
http://www.autismlink.comContains an extensive database of ASD service providers in
the United States.
http://www.autismspeaks.orgAutism Speaks is a large organization that is devoted to
advocating for individuals with ASD and their families. The Web site contains a wealth of
information on autism and how to become active in the ASD community.
http://www.iancommunity.orgA Web site devoted to linking families with researchers in
ASD. Also contains a wealth of information on the various issues families face in dealing with
autism.
http://www.nichcy.orgContains information on special education law in the United States.
In addition to federal legislation, the Web site provides information pertinent to individual states.
http://www.wrightslaw.comA Web site devoted to advocacy and legal information for
people with disabilities. The Web site also contains an international directory for support outside the United States.
Attwood, T. (2007). The complete guide to Aspergers syndrome. London, UK: Jessica
Kingsley Publishers.This handbook focuses on understanding Asperger syndrome and is written for anyone who is aected by Asperger syndrome.
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Frith, U. (1991). Autism and Asperger syndrome. Cambridge, UK: Cambridge University
Press.A compilation of theoretical papers on autism and Asperger syndrome and includes a
translation of Hans Aspergers original paper Autistic psychopathy in childhood. This book is
geared more for professionals.
Gabriels, R., & Hill, D. (2002). Autism: From research to individualized practice. Philadelphia, PA: Taylor & Francis.This book provides a thoughtful and concise guide for practitioners working with children with ASD.
Gabriels, R., & Hill, D. (2007). Growing up with autism: Working with school-age children
and adolescents. New York, NY: Guilford Press.As the title suggests, this book focuses on
the 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 book
provides a historical and cultural perspective of autism.
Harris, S., & Weiss, M. (2007). Right from the start: Behavioral intervention for young children with autism. Bethesda, MD: Woodbine House.This book is for families with young and
new diagnosed children with ASD. Aids families in setting up a home-based early intervention
program. 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 autism
and 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 in
adulthood. This book also serves as a practical guide for families and people with ASD as they
reach adulthood.
Jacobson, J., Foxx, R., & Mulick, J. (2005). Controversial therapies for developmental
disabilities: Fad, fashion and science in professional practice. Mahwah, NJ: Lawrence Erlbaum
Associates Publishers.This book discusses controversial treatments with autism. Included are
suggestions for professionals to assist families in making informed treatment decisions.
Maurice, C. (1994). Let me hear your voice: A familys triumph over autism. Ballantine
Books.This book provides a personal account of one familys struggles and triumphs with
autism.
Myers, S., Johnson, C., & the Council on Children With Disabilities (2007). Management
of children with autism spectrum disorders. Pediatrics, 120(5), 11621182.This article
provides a concise description on the various treatments for autism.
Oft, P. (2008). Autisms false prophets: Bad science, risky medicine, and the search for a
cure. New York: Columbia University Press.This book provides a concise and readable
history of the autism vaccine controversy.

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