Support for Families

Supporting Families of Children with ASD: The School Psychologists RoleStacy White, Adrienne Cox, Kim Markoff, & Christina Russell1AgendaBackgroundParenting Stress & Affective OutcomesQualitative Study: Family Quality of LifeIdentifying Divorce Risk Factors in Parents of Children with ASD

2Types of family supportFamily education and trainingParent /group supportRespite services/home health careFamily counsellingFinancial assistance

Transitions for adulthoodInformationalRecreational/leisure

(Freedman & Boyer, 2000)As we go through each of these sections of the presentation, well also be presenting practical ideas and resources for supporting families of children with ASD across these domains.

Freedman and Boyer held focus groups of parents with children with various developmental disabilities including autism.-Some of the themes that emerged were that families want to the power to choose what services they receive but that they also need help navigating the complex service system. 3Theoretical Perspective-ecological perspective: when considering intervention with the individual client, we also take into account the influence of other agents in individuals environment, including family and community

Focus on the family, not individual therapies for child with ASD

4Why the whole family?

-To promote positive learning experiences and outcomes for the student. -Ensure that parents have the information and resources needed to support their childrens learning.-These families will be operating from a multi-systemic perspective for the rest of their lives, help facilitate this process not hinder it5Stressors6In 2007-08:Children with autism comprised 4.5% of students with disabilitiesAn additional 5.4% identified with developmental delay

U.S. Department of Education, National Center for Education Statistics (2010)How Does This Impact School Psychologists?

-According to the National Center on Education Statistics, in the 2007-08 academic year, 4.5% (296) of children receiving special education services were identified with autism-An additional 5.4% were identified with developmental delay-What this means is that school psychologists are very likely to come into contact with children who have ASD or may later develop it

7How Does This Impact School Psychologists?66.4% of parents endorsed participation in support groups

More likely to:Be WhiteEarn >$40,000Have college degreeBe married/with partner

Mandell & Salzer, 2007

Point: large population of parents who dont fall into this group and may be underserved by community-based supports8How Does This Impact School Psychologists?Support from school staff and services was greatest source of support (Tehee et al., 2009)

Systems-based service delivery is one domain of competence emphasized in NASPs Blueprint for Training & Practice

In one study, a sample of parents of 3-18 year olds w/ ASD reported that support from school staff and school-based services were their greatest source of support from stress

Blueprint quotes:

School psychologists can no longer focus exclusively on intervening at the individual level if they hope to enhance outcomes and build capacity. The learning problems of students do not belong to students alone but to the systems charged with helping them succeed.

an increased emphasis on the link between home and schools and a greater recognition of the roles parents/caregivers play in their childrens educational outcomes are critical to the practice of school psychology in the 21st century9Stress and affective outcomes10Parental StressParents of children with ASD report higher levels of stress than:Parents of typically developing childrenParents of children with other disabilities Abbeduto et al., 2004; Blacher & McIntyre, 2006; Dabrowska & Pisula, 2010; Estes et al., 2009; Quintero & McIntyre, 2010

It has been consistently found in the research literature that

Some examples of other disabilities that have been studied in relation to the ASD population are Downs syndrome, Fragile X syndrome, ID without features of autism, etc.11Maternal StressMothers tend to report higher levels of stress than fathers (Gray, 2003)

There is also some evidence of differential levels of parenting stress reported by mothers and fathers. Mothers have been found to report more stress than fathers (although the finding is not consistent). It has been hypothesized that this may be due to mothers tendency to be more closely involved with day-to-day caregiving responsibilities, and therefore have more contact with stressors12Mental Health ConcernsHigher levels of anxiety and depressive symptoms (Olsson & Hwang, 2001; Sharpley, Bitsika, & Efremidis, 1997)

Again, when compared to parents of typically developing children and children with other disabilities, parents of children with autism have been found to report higher levels of both depressive symptoms and anxiety13Mental Health ConcernsOrr et al. (1993): Highest levels of stress and depression in mothers of 6-12 year olds

Gray (2002):Less emotional distress, stigmaIncreased concerns about future careCertain stressors may be more closely associated with certain developmental stages, and impact parents in different ways over the lifespan. Orr and colleagues (1993) found that among mothers of children with developmental disabilities, self-reported levels of stress and depression were significantly higher in mothers of 6-12 year old children than in mothers of preschoolers and adolescents.

In addition, the results of a longitudinal study of caregivers of children with ASD suggest that, as the child ages, parents may experience less emotional distress and feel less stigmatized with regard to their childs diagnosis, while concerns about their childs challenging behavior and future care remain constant, or even increase, over time (Gray, 2002). 14Parenting Stress & Mental HealthAcross the LifespanSo lets take a closer look at how stress, depression and anxiety vary across the lifespan15PreschoolASD symptomatology: 3 primary areas of impairment in autism (social, communication, repetitive behavior/restricted interests) There is also evidence for a significant relationship between child behavior problems and parental stress

Examples of symptomatology: Communication impairments, Impaired social functioning

Examples of associated behavior problems: tantrums, aggressive behavior, non-compliance, externalizing behavior, difficulties with emotional regulation

Over half of parents interviewed by Cassidy and colleagues (2008) reported that problems with speech and communication were among the most challenging and stressful aspects of raising their toddlers with ASD-tantrums, aggressive behavior and non-compliance also endorsed as being highly stressful

Davis & Carter: impairments in social functioning, externalizing behaviors (including impulsivity and aggression), difficulties with self-regulation

-Similar associations between child behavior problems (such as hyperactivity, stereotypic behavior and irritability) and parental stress have also been found (ie., Estes et al.; Hastings et al., 2005b; Tomanik, Harris, & Hawkins, 2004). 16PreschoolRisk factors:Sleeping problemsLower parenting self-efficacyLower use of social supports(Carter, de L. Martinez-Pedraza, & Gray, 2009)

Mothers of young children with ASD have also been found to report higher levels of anxiety and depressive symptoms than other parents (Estes et al., 2009; Quintero & McIntyre, 2010).

Some of the risk factors that have been found to be associated with more severe depressive symptoms in this group of mothers: lower perceived child competence, child sleep problems, increased parental anger and hostility, increased parental anxiety, lower parenting self-efficacy, and lower use of social supports (Carter, de L. Martinez-Pedraza, & Gray, 2009)17Elementary/Middle SchoolLecavalier, Leone, & Wiltz, 2006; Rao & Beidel, 2009Similar to preschoolers, autism symptoms and associated behavior problems have been identified as significant stressors for parents of school-age children

Lecavalier, Leone, & Wiltz (2006) found that behavioral issues, particularly conduct problems, non-compliance, and maladaptive social behavior, were strongly associated with parental stress.18Elementary/Middle SchoolDuarte et al, 2005; Konstantareas & Papageorgiou, 2006; Phetrasuwan & Miles, 2009A variety of other autism symptoms and associated behavior problems have been linked to higher stress in mothers

Other autism symptoms, such as poor social reciprocity, inappropriate emotional responses, and limited verbal communication and have also been reported as stressors for mothers

Also, in a Greek study by Konstantareas and Papageorgiou, mothers of non-verbal children reported higher stress levels than mothers of verbal children

19Elementary/Middle SchoolAmong mothers:

Distress, guilt, depression, responsibility for diagnosis and problem behavior

Higher anxiety

Behavior problems associated with maternal, but not paternal, stress

Gray, 2003; Hastings, 2003

For parents of school-age children, the relationship between child traits and parenting stress appears to be particularly salient among mothers.

In a qualitative study by Gray (2003), mothers of school-age children were more likely than fathers to endorse the detrimental impact of their childs autism on their emotional and psychological well-being. In particular, mothers reported significant distress, guilt and feelings of depression in adjusting to their childs diagnosis and assuming responsibility for their childs problem behavior.

Also, Hastings (2003) found that although mothers and fathers of children with ASD reported similarly high levels of stress and depression, mothers reported significantly higher levels of anxiety, and child behavior problems were significantly associated with maternal, but not paternal, stress20High School & AdulthoodFew studies, but trends are similar to those for younger age groups

Challenging behavior may continue to be stressor for parents

Relative to the younger age groups, few studies have investigated stress, anxiety or depressive symptoms among parents of older individuals with ASD.

Abbeduto and colleagues (2004) found that mothers of youth and young adults with ASD reported significantly higher levels of depressive symptoms than those of adults with Fragile X syndrome and Down syndrome.

Among older individuals with ASD, challenging behaviors may continue to be a source of strain on the family unit. In an investigation of 282 caregivers of young adults with intellectual disabilities, individuals with ASD displayed significantly higher levels of maladaptive behavior than those with other diagnoses, and their mothers cited higher levels of negative impact on the family (Blacher & McIntyre, 2006).21High School & Adulthood Long-term concernsHowever, as posited by Gray (2002), as the individual with ASD reaches adulthood, the sources of stress among parents may extend beyond immediate challenges (ie., problem behavior) to include longer-term concerns.

Gray found that while parents of adolescents and adults exhibiting high levels of violent behavior reported elevated levels of stress, their concern for the childs future care, particularly in light of limited resources and options for residential placement, was also cited as a significant stressor.

Among youth and young adults with ASD, the transition from school settings to the adult sector is of particular concern for caregivers22Support for Parents23Conceptual Underpinnings of Family-Centered SupportServices shouldEnable and empower family members to make informed decisionsBe responsive to the needs of the entire unit Be flexible enough to accommodate unique needs

Agosta (1989)

Agosta (1989)24I had two typical children, my husband and I made the choices. All of a sudden C (child with disability) came along and everyone else made choices for me. I lost all control. But (flexible supports) give families a choice, and I think thats something that is taken away when you do have a child with special needs.

Mother from the focus groups in Freedman and Boyer, 2000.

25Family Education and TrainingMcConachie and Diggle (2007) found that parent training led to lower levels of depression in mothers, among other positive child and parental outcomes

Tonge et al., (2006) found parent training improves parental mental health and adjustment in parents, particularly those with preexisting mental health problems (e.g. insomnia, anxiety, depression).

26Example of one manualizedParent-Training ProgramPre-Schoolers with Autism Brereton &Tonge, 2005

For parents of young children newly diagnosed with autism (2-5)60$ for Clinician Manual25$ for Parent Manual20 sessions

27Parent Education/Behavior Management (Tonge et al., 2006)Sessions were skills based and action oriented through the provisionof workbooks, modeling, videos, rehearsal (with child whenpresent), homework tasks, and feedback.28Parent/Group SupportPrimary caregivers of children with ASD need emotional support (Garwick et al., 1998; Shu et al., 2001)Parent-to-Parent model (Singer et al., 1999)Parents perception of their child improvedIncreased ratings towards resolution of their main needParent groupsMore informal, run by parentsCBT, run by clinicianOnlineAvailable anytime, dont require childcare

-Parent to parent is a one on one -Singer et al., 1999 Outcomes: parents positive perceptions of their child + impact on the family improved significantly parents ratings of progress towards the resolution of their main need showed a clear improvement.-for mothers of individuals with ASD there was no relationship between receiving support and affect. We interpret this finding for the comparison group as suggesting that emotional support is received in response to lifes difficulties, which is why levels of negative affect arehigher on days when more emotional support is received. (Smith et al., 2009)

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-Parents can find groups regardless of where they are along the process: Newly diagnosed preschooler, planning for their adolescent30

Family Quality of LifeSelected Results from a Qualitative Study31PurposeTo investigate the family quality of life amongst children with autism spectrum disorder and see how peers and the formation of friendship can shape emerging adolescence.

32Conclusion:

When I started this research I was really interested in this emphasis of peers and the formation of friendship in children with autism and seeing what struggles mothers were having in this area. What I quickly learned about is the multitude of challenges these families face. It seemed like to me that the peers and formation of friendship was still a key element to their future, but other issues began to weigh more heavily in the end, transitioning the focus of the study to some issues I feel we as School Psychologists and future school psychologists can better address within our families who have a child or children on the spectrum. 33Methods: Data Collection & AnalysisRecruitment of mothers from Indiana and Ohio. Interviews were conducted in the Spring of 2009.

34Interviews were transcribed, identifiers removed, and final transcripts were coded and grouped by question to identify common themes.

Demographics355 Mothers were interviews and of the 7 children with ASD represented, 6 were male and 1 was female.

All of the children had at least one sibling and in two of the families, the mothers had two children with ASD. DemographicsAges reflective of data collected in 200936Green SiblingsPink - SiblingsInterview37Final DiagnosisThe children were described with various levels of functioning.

What stood out about these children was that of the three older children, one was doing well in college and getting straight As and had a summer job lined up; but the other two were experiencing a number of problems even though they were considered high functioning.E.g. One male flunked out of one college, quit going to the 2nd, was employed, but had gotten three girls pregnant and has one (illegitimate) child, $30,000 in debt, cant ask for help, make a doctors appointment on his own, handle the bill collectors, and is living back at home.

38The Day I Found Out my Child had AutismMother 1: I think we just cried a lot It wasnt a surprise but it just kind of felt undeniable, finalized, and official. Husbands parents were angry accused them of exaggerating, blamed it on their parenting

Mother 2: had a feeling for the diagnosis, but was unsure what they should do to help their child.

Mother 3: They told the parents what their daughter had, and as the mother described it, pretty much good luck and sent them out the door without much of anything to do or anything. With the second child the mother thought she could short cut the grieving process, but ended up going through that process for a couple of years.

Mother 4: 1st child Had a hard time convincing people anything was wrong with him. Will probably be permanently disabled. (IQ150)2nd Child dumbfounded thought he was depressed remember driving homeand fighting back tears. But they knew what was going on and how to proceed because it was their second child diagnosed.

Mother 5: Describe absolute relief because it finally all made sense.

39Family Quality of Life After DiagnosisMother 1: Stressful and intense and it become very pubic. Had to make financial decision to discern what therapies would become priority.

Mother 2: Did not feel that it affected the quality of life of the household as much. Were times the mother felt frustrated her husband didnt understand her feelings/emotions.

Mother 3: After two with autism, we were not willing to go for strike three. As the kids got older it got harder for the mother to move about and take them places alone.

Mother 4: Felt as though it wasnt effective information early on diagnosis helped get services at school.

Mother 5: More concerns for her daughters safety and couldnt leave kids at home. Mother in laws response, Were just not going to talk about that. The diagnosis came during a time when the family was in crisis. The mom stated that they have been on a roller coaster since 3rd grade really. 40Sibling RelationshipsImprovementsBetter than ever before More tolerant and accepting PositiveThey have a pretty good relationshipPainful relationship physically and emotionally

Mother 1: Brothers engaging for long periods around mutual activities together (brother 8 yrs) (Sister 6 years) Improvements

Mother 2: (step-sister, 17 years) not around much, b/c in HS

Mother 3: Described that they fight, she is bossy and high strung, and his is laid back total opposites in every way. (brother 13.5 years, sister 15.5 years) but have your typical relationship

Mother 4: Physical: the two have terrible fights. One son is callous cant grasp hurting someone else. Emotion: The other son, learning from brother what not to do (brother homelessness). (brothers 17, 20 years - homelessness)

Mother 5: (sister, 20 years) They talk several times a week she lives out of state. The sister had been through some things emotionally because of their interactions, but now, They have a pretty good relationship.41The search for supportFacilitating peer relationshipsE.g. Finding sports campsFinancialMoney for therapy. There is never enough money, especially times two with AutismSupport for post-school/adult servicesE.g. Graduating high school > living independently

Mother 1: Currently prefers being with adults because they respond to him but starting to have strong desire to be with kids and has people to call friends participate in sports with typical developing kids where he would be encouraged to step up to higher expectations have adult support be safe and nurtured.

Mother 2: High number of students raised anxiety and created sensory issues for her son moved to public school, but was having to pay out of pocket.

Mother 3: Wanted an Autism Insurance bill to pass to help with the expense of providing therapies. Her kids were showing great improvements(Applied Behavioral Analysis Therapy & Speech Therapy) but couldnt afford to take them more than a couple days a week. Im sure they would improve much more.

Mother 5: Services to help bridge the transition from graduating from HS to living independently in ways that were safe. Son doesnt qualify for any kind of help and his counseling is more than he can afford was taking a told on the parents finances. 42Maternal Concerns

Clash between alternative therapies and medicationsCommunity acceptance of AutismEarlier diagnosis & interventionsAccess to servicesAvailability Affordability of services

Medications husband was a child psychologist, so they had been through a number of medicationsCommunity acceptance of Autism need to gain understanding from other mothersEarlier diagnosis wonders what could have been their situation now if their child could have gotten intervening services earlier.43Maternal ConcernsThere are questions and concerns that mothers still have.

Mother 2: concerned about son having more emotional outbursts than if he was a typical teenage boy.

Mother 3: daughter has interest in working in office; son not sure of career path that would hold his interests

Mother 5: I dont think Ill ever quit having questions. Prepare for future help to become more responsible.

44Planning for adulthood45Planning for the future:Adolescence to adulthoodAs the first wave approaches graduation, there are at least four times as many students identified with ASD who are in elementary and middle school.

To create change in outcomes for adolescents and young adults with ASD, efforts must be increased to develop scientifically-based practices now.

(Schall & McDonough, 2010)

46Interventions & Techniques: Prepare for Work

Specialized interventions and treatments can be used to teach important skills needed in the vocational setting:Career exploration activitiesWork experienceBehavior management strategiesEmployment retention strategies

(Hendricks & Wehman, 2009)Begin in high schoolCareer exploration activitiesCompetitive work experience prior to graduation help avoid poor employment outcomes in their future and give opportunity to:Develop relationshipsLearn valuable work skillsCreate strong work ethic

Behavior management strategies can be used to reduce inappropriate behaviors such as, aggression, self-injury, property destruction. Learning what behaviors are appropriate for the work environment

Increase employment retention by matching individual to complementary job Employment Retention strategies: offering choices, assessing task preference, evaluating social and communication needs, and adding any necessary adaptations and modifications.

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Interventions & Techniques: Postsecondary Education

For a successful educational experience adolescents will likely need: Specialized teaching strategiesSupportsAccommodations

(Hendricks & Wehman, 2009)

Limited research in this area

48Interventions & Techniques: Home & LivingPlanning should include: exploring residential opportunities and working toward goals that will enable appropriate living situations within the community.

If a residential setting is inaccessible, it would be beneficial to plan to educate the family members so they are well equipped to support their loved one.

(Hendricks & Wehman, 2009)

Educating Family Members: provide up-to-date information about ASDBest Practice as well as hands-on teaching of instructional strategiesImplementation of much needed behavior support plans

An area we can help that reflects a tremendous need of research is effective strategies for helping adolescents with ASD learn basic skills in the home setting. This could include skills related to:SafetyActivities of daily livingFinancial accountabilityBy acquiring these skills this could lead to better opportunities to stay in their community and also reduce the stress of their caregivers. 49Transition to Adulthood ResourcesLife Journey Through Autism: A Guide for Transition to Adulthood by Danya International, Inc. (Danya), Organization for Autism Research (OAR), and Southwest Autism Research & Resource Center (SARCC)http://www.researchautism.org/resources/reading/index.asp

Some of the topics covered include: Agency Help/Legal Information, Transition Plan, Vocation and Employment, Postsecondary Education, Life Skills

If you go to their website on the resource page, there are additional resources some available in pdf format, others are book resources.

50Support for families51Sibling EducationChildren may be confused about their siblings diagnosisLack of information leaves a big space to be filled by misinformation, fears and fantasies (Harris, 1994)Extent and openness of parental communication about ASD major factor in sibling adjustment (Howlin, 1988)After sibling education intervention, siblings who had increased knowledge had improved sibling adjustment (Kao & Laboto, 2002)

Research on effect of ASD on siblings is mixed with some researchers finding worse outcomes(e.g. depression, internalizing and externalizing behaviors) could be genetic underpinnings to depression as depressive disorders in families with ASD highly correlated, some neutral. 52Sibling SupportCompared to siblings, the child with ASD receives a disproportionate amount of attention from parents (Dillon, 1996)Siblings may feel isolation, guilt, shame, longing to be alone with parents, mourn for typical relationship (Harris, 1983)SibshopsServes as a protective factors for siblings of individuals with disabilitiesPositive results last into adulthood (Johnson& Sandall, 2005)Groups at school with siblings of children with ASD

-Siblings at risk for both internalizing and externalizing behaviors-Sibshops has workshops, Peer support within a recreational context-Also there is a Sibshops curriculum for practitioners to work; Only 34.95 for the book53

54Respite Services/Home health careOne of the most common family supports used (Freedman & Boyer, 2000)Parents report benefits such as break from routine, sleep, freedom, sense of privacy and normalcy (Davies et al., 2004)Relief that a trained person is watching your childOver half of parents did not receive information on how to acquire respite care subsidies1 in 4 parents were uninformed about respiteAlso called short break provisions UK55Financial AssistanceSSI, MedicaidHealth Care ReformFor the ASD community provision preventing plans refusing to cover a child with a pre-existing condition went into effect on September 23, 2010. Similarly, dependent coverage through age 26 has been very helpful for young adults with ASD given that certain companies do not opt out.Other resources (e.g. www.autismcares.org covers living expenses up to $1,000; www.neighborheart.org quality of life grants)Easter Seals Autism Family Resource CenterFinancial assistance, Lending library, Parent-to-Parent, Planning for the future-Supplemental Security Income-Medicaid there are multiple kinds Medicaid waivers, Disability Medicaid, financial-based medicaid56InformationalObstacles/Barriers to support services (Freedman & Boyer, 2000)Lack of information (e.g. list of disconnected numbers, out of date contacts)

57Example: Information Sheet

Autism Resource SheetCurrent as of____________Received from: Name____________ Date:________

1. Support/Resource Group ContactsLocal ARC Advocacy GroupName______________ Phone Number____________Local Chapter of Autism Society of America (ASA)Name______________ Phone Number____________

2. Public School Resources

3. Medical Professionals (as needed)

4. Treatment/education support

5. Other parents who have a child with autismBook only 28.95 on amazon58Identifying Divorce Risk Factors in Families of Children with Autism59Is Divorce More Common in Families of Children with AutismYes, more common in these familiesNo, less common in these familiesRates are the same across families with or without autism

60The AnswerYes, 80% more common in these families (National Center for Autism Research and Education, 2008)No, rates are the same in families with and without autism (Freedman et al., 2010).

So, which is correct?

We really dont know given that findings are inconsistent. Its likely that rates are stable among all families; however, the stress observed in divorced families of children with autism is greater. We see more of struggle in families of children with autism so this might make us presume that rates are higher61How Does Divorce Affect Families?Negative ConsequencesFinancial stressLiving apart from 1 parentAdjustment period

Is there anything positive about divorce?Yes, in families where a high level of conflict is being seen by the children

In most families, a short term consequence of divorce involves a loss of income. Mothers are often stressed about how to provide for a single family home. Similarly, children experience emotional stress from having to be separated from 1 parent. Typically, children need 2 years to adjust to the consequences of divorce. Divorce can be positive in families where a signficant amount of fighting is being done in front of the children62Who is at risk for divorce?Parents who have children with severe behavioral difficulties (e.g. self injurious behavior)Mothers who are depressed and have a child with special needsMothers who are young and have a child with autismParents whose youngest child has autism

How can School Psychologists intervene?Parents who have a child with self-injurious behavior are more stressed.

Maternal depression predicted partner depression. So, when mom is depressed its likely that dad is too (Hastings et al, 2005)

Younger mothers are more at risk (Hartley et al., 2010)

Birth order may predict divorce because the parents have other children that they need to attend to

If depression is suspected in one or both parents, this may be an early warning sign that the family is facing significant stress that may be affecting the quality of their marriage.

63Common Coping Strategies Used by Parents of Children with Autism According to Gray (2003), the 2 most common coping strategies were:

Anticipating difficulties that will arise in a given situationViewing the future one day at a time

When evaluating the relationship of parents, keep in mind that mothers and fathers differ in how they cope. For example, men tend to engage more in problem-centered coping whereas mother tend to engage in more emotional-centered coping.

Be64Common Coping Strategies Used by Mothers vs. FathersIts important to note that these arent necessarily the best coping strategies, but rather, theyre reported as the most common coping strategies. These are important because its really easy for us to asumme that the way that a parent is weird because of how they handle their child. We might assume that a father who spends a lot of time away from his family is married to his job, when in fact, this might be a way that this father copes with having a child with autism. Simlarly, if we heard that a mother was keeping her child with autism separated from their siblings, we might assume that she is wacked, when in fact, she might do this as a way to cope.

As school psychologists, we need to make sure that we keep in mind that everyone has different ways of coping with problems. We may need to intervene if we suspect that the method of coping is causing more stress to the family by providing resources65Whats Common Among Mothers with Higher Life Satisfaction (Tunali & Power, 2002)Prefer to focus on being a good mother rather than having a successful careerMore time spent with extended familyMore conversations with their spouse about spousal supportDisplay acceptance towards anomalous behaviorTunali and Power (2002) found that mothers of children with autism were more saisfied if they focused on being a good mom, rather than habing a successful career. Mothers who were the happiest spent more time with their extended family. This was likely because it fulfilled their desire to socialize. It also appears that talking about their marriage was really beneficial to mothers who felt more on the same page about their parenting roles. Mothers who were the most satified tended to be least embarrassed about their childs behavior66What Can School Psychologists do?Assess risk factors when meeting with parents

Recommend resources that will help the entire family (not just the child)

Were in a good position to assess how parents are coping with having a child with autism. If parents appear at risk for stress (e.g mom is depressed, or really young), it may be a good idea to talk to her more in depth about how their family is functioning. If you suspect that Mom and Dad are at-risk for marital problems, then you may want to point out that they have options that may ameliorate their stress. You could be the first person that tells them that they have more options that may make their life easier, or you might be the straw that breaks the camels back67Support for families68Family CounselingCounselors are trained to help families cope with a variety of internal and external stressorsCounselors can Aid families with special needs to normalize the experience through educationHelp parents work through feelings of guilt, hurt, blameInstruct couples to spend time alone together, take care of their own personal needsProvides families with a safe place to practice role-play, modeling appropriate social behavior(Lozzi-Tuscano, 2004)69Religious copingReligion can serve as a source of support for families with children with special needsAdditional social supportEmotion-focused coping E.g. minimizes stress by providing an alternative explanation for the challenges of parenting a child with ASD Problem focused coping E.g. respite care(Bennett, Deluca & Allen, 1995; Tarakeshwar & Pargament, 2001 )Religion helped provide parents with additional social support, helps parents with emotion-focused coping (e.g. minimizes stress by providing an alternative explanation for the challenges of parenting a child with ASD) and problem focused coping (e.g. respite care)

70Religious copingChurch groups (Christianity)Parents who see religion as a positive resource may look to their congregation as another resourceJudaismchavurahorhavurah71Quick lesson on Recreational LeisureCore family leisure involvement tends to facilitate feelings of closeness, personal relatedness, family identity and bonding.

Balance family leisure involvement provides the input necessary for families to be challenged, to develop, to adapt, to progress as a working unit and helps foster the adaptive skills necessary to navigate the challenge of family life in todays society.

Families that participate in both report higher levels of family functioning72Recreational LeisureNumber of hours mothers spend in leisure activity predict positive affect (Smith et al., 2009)Caveat Mothers spend significantly less time in leisure activities and significantly more time providing childcareFewer than of parents felt there are appropriate play and leisure options in their local areaOnly 58% of respondents felt their child could access mainstream activitiesWe need to find activities to involve the whole family that also accommodate for the special needs of children with ASD. 73CommunityYMCAColleges and University Programs/ResearchE.g. Special education dept, Adaptive P.E. programSpecial OlympicsParks and Recreation

YMCAs some have services for children with autism, some will offer free memberships if you use for therapy purposes or for families with limited income, offer trained staff, inclusive swimming, summer camps for children with disabilitiesGreat about community services informal interaction among parents, community of informed parents who all can help advocate for each other, another source of social support. 74Cruises through Carnival (~7-800 per person)Group cruises + Individual Autism ServicesAccommodate special diets, cruise PECS, experienced staff, priority boarding, saved seats at shows, respite care

Autism CruisesVacationing with children on the spectrum75Ski Resorts

Ski resorts starting to offer adaptive lessons for children with ASD Anecdotal evidence kids with ASD benefit from skiing

76Implications for School PsychologistsWhat should we take away?77What can school psychologists do?Start a parent,or ASD support group (ideas: book club)Consider parent-centered interventionsOrganize parent training at the school Share information about risks associated with having a child with autism on marriage, family structure, etc. Become well-informed about the resources, opportunities and connections for families in your areaCreate fact sheet for parents with information pertaining to where they are at in planning for their childAutism Awareness for students and teachersSupport groups for siblings of children with ASDReach out to other school personnel (e.g. counselors, social workers, etc) to organize programming for families with ASD

78Group Activity!

Directions: With your group, devise a list of cool and/or innovative resources (not included in the presentation) that you can recommend to families of children with autism. Be prepared to share your top 3 ideas with the other groups79Questions80ReferencesAbbeduto, L., Seltzer, M.M., Shattuck, P., Krauss, M.W., Orsmond, G., & Murphy, M.M. (2004). Psychological well-being and coping in mothers of youths with autism, Down syndrome, or Fragile X syndrome. American Journal on Mental Retardation, 109(3), 237-254.Blacher, J., & McIntyre, L.L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50(3), 184-198.Carter, A.S., de L. Martinez-Pedraza, F., & Gray, S.A.O. (2009). Stability and individual change in depressive symptoms among mothers raising young children with ASD: Maternal and child correlates. Journal of Clinical Psychology, 65(12), 1270-1280.Cassidy, A., McConkey, R., Truesdale-Kennedy, M., & Slevin, E. (2008). Preschoolers with autism spectrum disorders: The impact on families and the supports available to them. Early Child Development and Care, 178(2), 115-128.Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266-280.Davis, N.O., & Carter, A. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278-1291. Duarte, C.S., Bordin, I.A., Yazigi, L., & Mooney, J. (2005). Factors associated with stress in mothers of children with autism. Autism, 9(4), 416-427.Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375-387.Gray, D.E. (2002). Ten years on: a longitudinal study of families of children with autism. Journal of Intellectual & Developmental Disability, 27(3), 215-222. Gray, D.E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science & Medicine, 56, 631-642.Hastings, R.P. (2003). Child behavior problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47, 231-237.Hastings, R.P., Kovshoff, H., Ward, N.J., Espinosa, F.D., Brown, T., & Remington, B. (2005b). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35(5), 635-644.Hastings, R.P., & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disorders, 3(1), 327-336.Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24, 2, 77-88. doi: 10.1177/1088357608329827

81ReferencesKonstantareas, M.M., & Papageorgiou, V. (2006). Effects of temperament, symptom severity and level of functioning on maternal stress in Greek children and youth with ASD. Autism, 10(6), 593-607.Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behavior problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172-183. Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11(2), 111-122. doi: 10.1177/1362361307077506 National Association of School Psychologists (2006). School psychology: A blueprint for training and practice III. Bethesda, MD: Author.Olsson, M. B., and Hwang, C. P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, Special Issue: Mental Health and Intellectual Disability: IX 45(6), 535543.Orr, R.R., Cameron, S.J., Dobson, L.A., & Day, D.M. (1993). Age-related changes in stress experienced by families with a child who has developmental delays. Mental Retardation, 31(3), 171-176.Phetrasuwan, S., & Miles, M.S. (2009). Parenting stress in mothers of children with autism spectrum disorders. Journal for Specialists in Pediatric Nursing, 14(3), 157-165.Quintero, N., & McIntyre, L.L. (2010). Sibling adjustment and maternal well-being: An examination of families with and without a child with an autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 25(1), 37-46. Rao, P.A., & Beidel, D.C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33(4), 437-451.Schall, C. M., & McDonough J. T. (2010). Autism spectrum disorders in adolescence and early adulthood: Characteristics and issues. Journal of Vocational Rehabilitation, 32, 81-88. doi: 10.3233/JVR-2010-0503Sharpley, C. F., Bitsika, V., & Efremidis, B. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism. Journal of Intellectual and Developmental Disability 22(1), 1928.Tomanik, S., Harris, G. E., & Hawkins, J. (2004). The relationship between behaviors exhibited by children with autism and maternal stress. Journal of Intellectual and Developmental Disability 29(1), 1626.Tehee, E., Honan, R., & Hevey, D. (2009). Factors contributing to stress in parents of individuals with autistic spectrum disorders. Journal of Applied Research in Intellectual Disabilities, 22, 34-42. doi: 10.1111/j.1468-3148.2008.00437.xU.S. Department of Education, National Center for Education Statistics (2010). Digest of Education Statistics, 2009 (NCES 2010-013). Retrieved from: http://nces.ed.gov/fastfacts/display.asp?id=64