Siblings of Children with Autism Spectrum Disorders

Siblings of Children with Autism Spectrum Disorders:
Psychosocial Adaptation, Sibling Relationships and Parental Stress Factors
(This was a proposal/ assignment for a Research Methods class at Montclair State University, however, I do want to execute the study in the near future)

I. Purpose
The purpose of this study is to examine the siblings of children with autism spectrum disorders (ASD) and discover how this condition along with parental stress factors influences their own psychosocial structure and the relationship with their disabled sibling.

II. Definition of Terms

1) Autism Spectrum Disorder (ASD)
Autism Spectrum Disorders (ASD’s) are a group of developmental disorders which are derived from the disorder Autism (sometimes called “classical autism”) Autism is characterized by a variety of behavioral deficits such as impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests.
The ASD’s include Asperger’s syndrome, Rett’s syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). (http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#133693082)

III. Justification of Study
In recent years, Autism and Autism Spectrum Disorder (ASD) have been receiving a lot of attention in both the educational as well as medical fields. Approximately mid-point during the twentieth century is when the name for this disorder first appeared; and now it affects an estimated 3.4 in every 1,000 children ages 3-10. It has been made clear that Autism can create disruption in families and unfulfilled lives for many children
(http://www.nimh.nih.gov/health/publications/autism). A lot of research is being done to investigate the causes of this disorder from an organic and biochemical perspective. At the same time, there is equal work and research being done to explore treatments plans, behavioral approaches and interventions for the ASD child in the educational setting.
Currently, there appears to be a growing interest in how this disorder affects families. A recent study investigated family resilience of children with autism; showing such effects as connectedness and closeness, positive meaning-making of the disability and spiritual and personal growth. (Bayat, 2007) However, Autism in any form is still a stressful condition to deal with; the parents and the other children in the family will in no doubt be influenced by this fact. Numerous studies involving the psychosocial adjustments, behaviors and coping skills of siblings of children with ASD have appeared in the last ten years showing the importance and interest in this area. (Kaminsky & Dewey, 2002; Roeyers & Buysse, 2003; Macks & Reeve, 2007; Orsmond, Kuo & Seltzer, 2009). Interestingly, these recent studies show inconsistencies. There are many reviewed studies that have discovered negative outcomes for the siblings; which include feelings of being alone and increased behavior problems due to the ASD of their brother or sister. However these fail to indicate the conditions of the environment and various circumstances that may have an effect on these conclusions (Rivers & Stoneman, 2003).
In a typical family, siblings play together and develop supportive relationships through intimate daily contact with each other during their childhood years. Both nurturance and conflict play a part in developing a sense of emotional understanding, self-regulation and feeling comfortable with their sense of belonging. (Orsmond & Seltzer, 2007) In families where there is a child with ASD, the sibling relationship may be compromised but at the very least, different than in a typical family; this is mainly due to the fact that the ASD sibling may lack such things as play or social skills. In addition, stress factors of the parents also have an effect on this dynamic. Sometimes parents may feel inadequate in handling their Autistic child and this stress may ultimately make regular family activities, such as trips or outings more difficult (Twoy, Connolly, & Novak, 2006; Higgins, Bailey, & Pearce, 2005). Changes in the family’s daily living and stressed behaviors of parents in connection with the ASD child may create resentment and subsequent difficulties in the sibling relationship.

IV. Annotated Bibliography
1) Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, Vol. 51, part 9, p.702-714.
In this article, the author explores the factors of family resilience and states that despite the popularity of this area of study, little has been done in families with children that have disabilities. The conclusions indicate that a significant number of families of children with autism present factors of family resilience. Participants in this study were parents only, with no siblings involved in the data. Also within the article, there are aspects that are noted but not fully explored, such as parents being advocates for their autistic child. These, the author states may influence the elements of resilient families and may need further examination. In addition, the study has a major limitation regarding demographics; stating that about 63% of the participants were from middle to upper middle white families.

2) Kaminsky, L. & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry, 43 (2), p.225-232.
This article described a comparative study and used two other groups to measure the psychosocial adjustment of the siblings of children with autism; one being siblings of Down syndrome and the other siblings of normally developing children. It focused on feelings of loneliness and social support as well. There were several measures used: Achenbach Child Behavior Checklist (Achenbach, 1991), Social Support Scale for Children (Harter, 1985), Loneliness and Social Dissatisfaction Questionnaire (Asher et al, 1984), Adaptive Behaviors Questionnaire, and Demographics Questionnaire. Ultimately, the study concluded that enhanced psychosocial adjustment of siblings of children with autism was associated with a larger number of siblings in the family. A major limitation noted in this study was that 80% of the siblings were older than the child with autism and because of the small number of younger participants analyses comparing these two were not possible. Therefore the findings may not be applicable to younger siblings.

3) Macks, R. & Reeve, R. (2007). The adjustment of non-disabled siblings of children with autism. Journal Autism Dev Disord., 37: 1060-1067.
In this study, siblings of autistic children were compared to siblings of non-disabled children. The outcome showed that having a child with autism seems to enhance the psychosocial and emotional well-being of their siblings when demographic risk factors are limited. Both children and parents participated in this study and were measured by standardized means. The children were asked to complete the Children Depression Inventory-Short Form (CDI-S) (Kovacs, 1992) as well as the Piers-Harris Children’s Self-Concept Scale (Piers, 1984). Parents completed Behavior Assessment System for Children-Parent Rating Scales (BASC-PRS) in relation to their non-disabled child. The study noted that positive results may have had some explanations. For example, siblings may have viewed themselves quite favorably as compared to their disabled brother or sister. Another factor from the parental perspective is that most parents of ASD may not have an accurate view of their typical child because they spend so much time caring for the child with autism. Discrepancies were noted between self-reports and parent reports; noting that most studies will have a single type of respondent however multiple types of respondents were advisable in this situation. Once again, demographics were emphasized in the discussion section indicating that future studies should examine race, religion, marital status, and gender of the ASD child.

4) Rivers, J.W. & Stoneman, Z. (2003). Sibling relationships when a child has autism: marital stress and support coping. Journal of Autism and Developmental Disorders, Vol. 33, no. 4.
This article is most relevant to my study because it involves the stress of the parents. As hypothesized by the author, when the marital stress levels were higher, the siblings and the relationships were more compromised. Overall however, the siblings did express satisfaction with their sibling relationships whereas parents were somewhat less positive. Parent-sibling triads were used in this study (1 parent, autistic child, typical child) and incorporated self- report inventories and questionnaires. Two main instruments were used in measuring results: Sibling Inventory of Behavior (SIB) (McHale & Gamble, 1987) and Satisfaction with the Sibling Relationship Scale (modified in 1989). Marital Stress was measured by a modified version of the FILE: Family Inventory of Life Events and Changes (McCubbin, Thompson, & McCubbin, 1996). The author stated that families who experienced extreme amounts of marital stress and sought a high level of formal supportive services outside the family, had more negative reports related to sibling relationships in comparison to families who sought lower levels of outside support. These findings, the author states, reinforce the importance of looking at family context as an important factor in assessing the qualities of the sibling relationship.



References
Achenbach, T.M. (1991). Manual for the child behavior checklist/4–18 and 1991 profiles. Burlington, VT: University of Vermont Department of Psychiatry.
Asher, S.R., Hymel, S., & Renshaw, P.D. (1984). Loneliness in children. Child Development, 55, 1456–1454.
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, Vol. 51, part 9, p.702-714.
Harter, S. (1985). Manual for the Social Support Scale for Children. Denver, CO: University of Denver.
Higgins, D., Bailey, S., & Pearce, J. (2005) Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9(2), 125-137.
Kaminsky, L. & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry, 43 (2), p.225-232.
Kovacs, M. (1992). The children’s depression inventory: Manual. North Tonawanda, NY: Multi-Health Systems, Inc.
Macks, R. & Reeve, R. (2007). The adjustment of non-disabled siblings of children with autism. Journal Autism Dev Disord., 37: 1060-1067.
McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (1996). Family assessment: Resiliency, coping, and adaptation. Madison, WI: University of Wisconsin.
McHale, S. M., & Gamble, W. C. (1987). Sibling relationships and adjustment of children with disabled brothers and sisters. Journal of Children in Contemporary Society, 19, 131–158.
www.ninds.nih.gov (2009) National Institute of Health/ National Institute of Neurological Disorders and Stroke
Orsmond, G.I., Kuo, H., & Seltzer, M. (2009). Siblings of individuals with an autism spectrum disorder: Sibling relationships and well-being in adolescence and adulthood. Sage Publications and the National Autistic Society, Vol. 13 (1) p. 59-80

Orsmond, G. I. & Seltzer, M. (2007). Siblings of individuals with autism spectrum disorders across the life course. Mental Retardation and Developmental Disabilities Research Reviews, 13:313-320.
Piers, E. V. (1984). Piers–Harris children’s self-concept scale: Revised manual. Los Angeles, CA: Western Psychological Services.
Rivers, J.W. (2008). Child temperaments, differential parenting, and the sibling relationships of children with autism spectrum disorder. Journal Dev Disorders, 38: 1740-1750.
Rivers, J.W. & Stoneman, Z. (2003). Sibling relationships when a child has autism: marital stress and support coping. Journal of Autism and Developmental Disorders, Vol. 33, no. 4.
Twoy, R., Connolly, P.M. & Novak, J.M. (2007). Coping strategies used by parents of children with autism. Journal of the Academy of Nurse Practioners,19, p. 251-260.



Siblings of Children with Autism Spectrum Disorders: by Pamela Ullmann is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Art Makes Sense- Sensory Art Therapy

Creative art making can offer unique ways for children to gain a sense of control and mastery of their environment, grow in self expression, self awareness and self-esteem. This holds true for children with special needs, ASD (Autism Spectrum Disorder), and other developmental issues as well. However, these children very often have “sensory” issues or sensory integration disorder which can affect their responses to various art materials.

That is why it is important to have a trained and credentialed art therapist or related professional assess the child and create a customized program that can help the child with sensory issues while at the same time engage in creative expression.

Children may experience deficits in one or several sensory areas; the most often observed is visual processing, auditory processing, and “tactile defensiveness” (an aversion to certain textures and touching). Art making with an experienced therapist can often break through these issues in a fun and non-threatening way; enabling the child to experience new and creative expression.

Visual Techniques:
Art making is obviously a visual modality, but those children with visual processing issues may need adaptations, concrete steps, and prompts in order to follow effectively. Sometimes using a page border helps contain the image making. Using dark colors on white paper or white chalk on black paper can create maximum contrast. Utilizing thicker crayons and markers can build a stronger visual focus. Also, the therapist can incorporate dotted lines as a “starter” for the child to trace around lines or shapes. Another processing technique is to present materials in a clock-like manner one by one; avoiding too many materials in the working space.

Helpful Techniques for Auditory Processing Difficulties
• Combine verbal instructions with sign language or hand motions
• Make sure the art making activity is presented in a quiet room or area
• Utilize pictures or “samples” of a particular art project when giving directions
• Use visual cues when transitioning from one activity to another along with instructions (such as flashing lights on and off in the room)

What is Tactile Defensiveness?
The main cause is neurological disorganization in the midbrain region of the brain which is basically responsible for filtering incoming stimuli, and, may not sufficiently screen out all extraneous tactile stimulation causing the child to perceive the input as extreme and uncomfortable. The central nervous system ability to process tactile sensory input is distorted causing the child great discomfort. Their brain may register subtle sensations as extreme irritation or even painful and he may respond in an abnormally reactive way such as grimacing or pulling away from the stimulus.

Sensory based art making is a fascinating modality that allows children to engage in creative expression with no pressures. Using this approach, an Art Therapist can assess the severity of tactile issues and can help the child build tolerance in this area. Depending on the nature of the tactile defensiveness, the art therapist can use materials within the art making or as a separate activity of just playing with the materials; this starts the process of de-sensitizing the child in a fun and non-threatening manner.

Here are some art and play materials that are often used:
• Cornstarch and water play (creates a “gooey-like substance)
• Feathers, chenille, pom-poms to create “texture collages”
• Water-play using food dye and various containers
• Play dough, putty, and other modeling compounds
• String, felt, other craft materials
• Sand –art
• Shaving cream finger-painting
• Rice, shredded tissue paper

The list goes on and the therapist can create recipes and projects that are tailored to the child’s interests to encourage engagement. The caution here would be to go slowly and not overwhelm or over stimulate the child with an abundance of tactile materials. Let the child take the lead and if the child responds negatively, make a note and try new materials.

Art Makes Sense-Sensory Art Therapy by Pamela Ullmann is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.

Painting with wheels!!

Although it has been a while since I have ran a "Wheel Art" workshop, I did find it very gratifying to help children create works of art with their own wheels!

What is Wheel Art?
Wheel Art is a unique activity for individuals who are wheel chair dependent. Each “wheel artist” uses the wheels of their chair to paint onto a large canvas secured to the floor. The artists all contribute their own style, color and unique patterns that create an amazing community mural to be shared.

Who Can Participate in Wheel Art?
The wheel artist may wheel themselves; either manually or through a powered wheel chair. Or, if they are not able to do so an assistant can help them move across the surface. Children, young adults and older adults all enjoy wheel art. Wheel art is empowering for the person confined to a wheel chair because it allows them to express their creativity in an exceptional way. Just as each person is unique, the patterns from their wheels are as well; they reflect a part of themselves which is “one of a kind”. After the piece is completed the artists can proudly look back and recognize their own tread marks on the canvas; feeling a part of a community of special individuals.

Painting with Wheels
Different painting techniques are used to achieve successful application onto the wheels. Non-toxic acrylic paints along with various brushes and rollers are used in conjunction with special additives to maximize paint vibrancy and fluidity.

Each wheel artist chooses a color to paint with. After successfully loading the wheels with their chosen color, the artist moves their chair through and across the surface of the canvas creating patterns and linear shapes throughout. Sometimes, a favorite song is played in the background while the painting takes place. The experience then becomes a “dance” with their chairs as well as a visual art activity. A wonderful process with a beautiful product!

For more information on having a "Wheel Art Day" for artists in wheel chairs, please email Pamela@colorsofplay.com

Autism and Creative Arts Therapy

An Emerging Need
Data released by the Centers for Disease Control (CDC) in 2007 revealed a startlingly high prevalence of Autism Spectrum Disorders in New Jersey children: 10.6 per 1,000, or one child in every 94.
School systems, health care facilities, and community service agencies struggle to meet a rising need and demand for innovative services that can give children on the autism spectrum the best chance to develop intellectually and socially, to discover their talents and cope with their challenges. Parents and siblings of children on the autism spectrum also need supportive services to cope with the stress of their children’s special needs.
We aim to develop a comprehensive creative arts therapy curriculum for children diagnosed with Autism Spectrum Disorders, including Art Therapy, Music Therapy and Dance Therapy. In addition, we will offer creative workshops and healing groups for overstressed family members.
Creative Arts Therapies for Children with Autism Spectrum Disorders
Creative arts therapies offer many benefits for children on the autism spectrum:
• Engaging hard-to-reach youth: Simply put, creative arts therapies are fun. Even children who resist other interventions may participate eagerly in Art, Music, and Dance Therapy
• Sensory Stimulation and Integration: Because children on the autism spectrum have heightened sensory needs, they often respond well to the multisensory stimulation and concrete, hands-on approach inherent in art, music, and dance therapy. Music and dance help to integrate the body and increase sensory tolerance.
• Socialization: Sharing art and performing together can help children on the autism spectrum build social skills and bond with peers.
• Communication and Self-Expression: Creative arts provide a precious medium of self-expression for children with limited or no verbal communication.
• Building the Imagination: Creative art therapies have unparalleled capacity to address imagination deficit, a classic characteristic of autism. Art therapy can help children with autism to build abstract thinking skills, creativity, and flexibility.
• Strengthening Family Relationships: Art therapy can also help families discover new ways of relating to children with autism spectrum disorders, and foster an appreciation of these children’s unique gifts. Workshops and healing groups targeted to parents and siblings of autistic children will help family members develop supportive peer relationships and coping skills.