Background
Parenting of autistic children is challenging, even in an era when there is greater acceptance of the condition when better counseling and more support groups are available to parents. To a greater extent than when dealing with other problem behaviors, parents go through a gamut of emotions: puzzlement at non-response, apprehension when making an appointment for a diagnosis, disappointment at having the disability confirmed, self-blame at having perhaps pressured the child into withdrawal, and despair that the child is disabled for life. In aid of bolstering parental competence, this paper describes coping strategies and advises against common pitfalls when rearing autistic children. In common with autism support groups and educational material, the goal is to enhance parental confidence, sense of self-worth, and success at mitigating the disability of the child.
How Families Adapt Through Time
Early Years from Diagnosis to School Age
Family adaptation is perhaps most difficult in the infant and toddler stages. For this is when the long-term impairment of communication, imagination, and socialization manifests itself in an inability to attain or maintain eye contact, to engage in imaginative play by one’s self, and spontaneously use language. Then the clinical diagnosis confirms parents’ worst fears and the long years of adaptation starts.
As if language and attention impairments were not frustrating enough, parents experience yet more stress adapting to maladaptive behavior such as tantrums born out of frustration when autistic children cannot articulate their desires. This is precisely why the most effective interventions target language and joint attention impairment.
Disappointment, lack of acceptance and understanding, and stress at learning the diagnosis are themselves material factors in successful adaptation (National Research Council, 2001). One empirical finding in this respect came in an analysis of material synchrony. “Maternal synchrony” refers to the finding by Siller and Sigman (2002) that maternal competence at mirroring the lead of an autistic child when it came to attention focus and activity rate yielded measurable gains in communication and language skill growth among very young children. Three types of maternal synchrony have been identified: verbal, “undemanding verbal,” and gesture. An observational longitudinal study by Kuhn found gesture and “undemanding verbal” synchrony to be statistically significant as a correlate of learning the expressive language. In addition, “undemanding” synchrony was shown to improve toddler progress in responding to joint attention. As to verbal synchrony, this was shown to be tangibly degraded by maternal stress (measured in self-report questionnaires).
On the other hand, positive results were reported by Siller (2007) for the development of language growth among preschoolers. The collaborative nature of inculcating meaning and culture was borne out by the finding that parental responsiveness to early play interaction yielded comparatively superb language growth quite independent of native mental or language ability.
School Years from 3- 12 Years old
Perhaps the most critical steps a family can make to adapt when the autistic child attends pre-school, kindergarten, and grade school, Cook (2009) suggests, have to do as much with preparing for the transition to a new environment as with intensive tutoring.
The pre-school environment and roster of activities are alien enough for non-clinical children. Those afflicted with autism spectrum disorder (ASD) need even more preparation to make the transition. Parents and elder siblings can help by beginning to make school routines real for the young autistic child. In the months before school starts, the family can get the child used to a morning schedule of being read to and trying his hand at worksheets. Given disparities in talent, the child might be made to experience success first with art or writing his name. The key here is orienting the child to a schedule of school routines before being released for play and “recess”. Parents and siblings can take turns to offset the mind-numbing repetition of introducing the child to his ABCs and numbers.
The emotional and physical transition itself can be eased both by ensuring a sympathetic reception from the teaching staff that will handle the child and by touring the child around the school premises long before school starts. For the former, it is expected that disabled children on an Individual Education Plan get the benefit of an end-of-term transition meeting among previous and future teachers, as well as therapists who have been and will be committed to the child. This is a good time to brief everyone involved with the child’s progress, developmental changes, favorite food and drink, sensory issues like sudden loud noises, events and stimuli that unduly upset the child, and how the family soothes the child when disturbed.
The physical transition to new surroundings and figures of authority can be eased by creating an album from pictures of the facilities, teachers, school officials, counselors, and therapists. Showing them to the child all summer creates an aura of familiarity. So do leisurely trips to enjoy the playground and explore the facilities.
By the middle years, Siller (2007) reports from small-group observational and longitudinal studies that maternal synchrony continues to have long-term and beneficial effects. At age ten, children who had been exposed to distinctly better verbal or gesture synchronization when first learning to play were distinctly superior in communication and joint attention than those autistic children given less starting synchronization. The cumulative benefit of superior development lasted, in fact, until age 16 when the longitudinal study terminated.
Another form of adaptation is for parents to take a more assertive stance during the early years of schooling. They must be prepared to learn what goes on and to speak up on behalf of the autistic child too withdrawn and uncommunicative to navigate his or her way through conflicts with classmates or thoughtless teachers.
Adolescence
At this stage in life, troublesome enough for nonclinical students, parents adapt yet again by becoming even more involved. They find themselves unable to take on the more authoritative parenting style needed to cope with an endless succession of fads and peer group pressures. Instead, parents must become even more supportive when their children with ASD wilt in the face of social pressures and spiral down into feelings of inadequacy and low self-worth (Rutgers, van IJzendoorn, Bakermans-Kranenburg, Swinkels, et al. 2007).
Greater involvement also takes the form of searching out new programs and therapies that will accelerate acceptance of the autistic adolescent by his peer’s probe for the possibility of independent adult life.
The Four Primary Coping Formulas
Positive parental attitude
For their own sake, their autistic child, and the rest of the family, parents need to find it within themselves to put up a brave front and project a positive attitude. This takes an iron will and courage but it is necessary to overcome the miasma of pessimism, diminished self-esteem, and behavior problems that ASD can inflict on the family. Nonclinical siblings need to take their cue from the verbal expressions and positive attitude of parents else they can be uncertain how to deal from day to day with the dysfunctional family member.
Exuding a positive attitude also means being frank and open about the disability of the autistic child. Being able to converse freely about feelings and expectations becomes intrinsic to educating the other children about the condition and hence, dispels any possibility of confusion or harm thoughtlessly inflicted on the disabled family member. In an ideal world, a positive parental attitude can help offset resentment at having to make provisions for the autistic child, especially if family income is ill-suited to paying for counseling and therapy.
Communication
Beyond synchrony, frequency and content of communication are key factors. There is evidence, for instance, that employing internal state (IS) language that dwells on thoughts, feelings, and perceptions of animate beings is something all parents do with young children, whether normal or impaired. A case study by Bird, Cleave, Curia, and Dunleavy (2008) reveals that parents of an autistic child did use IS vocabulary in about one-fourth to one-third of their utterances. Subsequent language development concerning IS was not materially better because the authors imply, the frequency of emotion-related utterances was lower than the norm for parents with unimpaired children.
Support
This coping formula refers to both intra-family support and that obtained from outside sources.
Parents need to reinforce the natural tendency of siblings to support each other. While normal play and socialization must make accommodations for the unique weaknesses of the autistic child, parents have to encourage positive sibling relationships.
When the autistic child lives out of adult life, after all, it is the siblings who will be around longer and therefore potentially able to continue giving support. Such cohesive family relations hinge principally on parents being profuse with prompting and praise, whether intuitively or educated to be so by interventions from external groups.
After getting over their disappointment over having to rear a less-than-ideal child, most responsible parents immerse themselves in finding out all they can about autism and possible therapies. Sooner or later, they do face up to the fact that their autistic child needs to see a therapist regularly. Through endless searching for solutions, parents also locate autism support groups that meet face-to-face or exist as virtual communities on the Internet.
If somewhat disappointing for having no magical treatments or quick fixes to offer, support groups of other parents at least provide a sounding board for ways of coping with a disabled child.
As well, support groups and professionals provide interventions that train less-than-perceptive parents about shoring up the self-esteem and growth potential of the autistic child.
The common ground between internal and external support is provided by Sibshops, a community support group run by untrained professionals and targeting 8 to 13-year-olds for peer support, sharing concerns about a disabled sibling, learning how to cope, and facing up to the implications of autism (Meyer and Vadasy, 1994).
Family empowerment
A segment of professional support groups works on interventions to promote family empowerment. This is, first of all, concerned with minimizing the natural propensity for negative emotions, self-blame and projecting the problems of the family on the child with autism being just two. In general, findings support guiding parents. Instead, interventions are designed to implant self-efficacy as parents and to help the couple cope via a hardnosed, businesslike problem-solving approach.
What Hurts: Three Common Traps That Parents of Children With Autism Should Be Aware Of
Over-involvement
This pitfall surfaces as mothers evincing a great deal of expressed emotion and overt criticism. Over-involvement risks aggravating autism symptoms (notably social impairment), as well as the frequency and severity of internalizing and social maladaptive behaviors. Essentially, this means a relapse for the child.
Over-protectiveness
Attempting to safeguard the autistic child, even as an adult, from untrammeled interaction with the “real world”, may truly be on moments of confusion, embarrassment, and awkwardness but by the same token, over-protectiveness is counterproductive. This negates efforts at education, skills training, therapy, and counseling, as well as the immense positive reinforcement autistic persons, receive for learning and accomplishing beyond expectations.
Rejection
The worst pitfall of all is, of course, rejecting the autistic child as an unfortunate genetic accident or a bundle of disabilities that is all the child’s shortcoming. Like over-protectiveness, rejection deals a devastating blow to the possibility of a child reversing his social withdrawal and revealing his true potential for academic and occupational accomplishment.
References
Bird, E. K.-R., Cleave, P. L., Curia, J. & Dunleavy, M. (2008). Parental talk about internal states to their child with autism. Focus on Autism and Other Developmental Disabilities, 23 (3); 166-175.
Cook, M. (2009). How to help your autistic child transition to kindergarten. Associated Content. Web.
Kuhn, J. C., Ph.D. (2007). Maternal synchrony predicts joint attention and language gains in toddlers with autism. Dissertation: University of Massachusetts, Boston.
Meyer, D. J. & Vadasy, P. F. (1994). Sibshops. Baltimore: Paul H. Brookes.
National Research Council (2001). Educating children with autism. Washington, DC: National Academy Press.
Rutgers, A. H., van IJzendoorn, M. H., Bakermans-Kranenburg, M. J., Swinkels, S. H. N. et al. (2007). Autism, attachment and parenting: A comparison of children with autism spectrum disorder, mental retardation, language disorder, and non-clinical children. Journal of Abnormal Child Psychology, 35 (5); 859-870.
Schopler, E. (1976). Toward reducing behavior problems in autistic children. Journal of Autism and Childhood Schizophrenia, 6 (1): 1-13.
Siller, M. & Sigman, M. (2002). The behaviors of parents of children with autism predict the subsequent development of their children’s communication. Journal of Autism and Development Disorders, 32 (2): 77-89.
Siller, M. J., Ph.D. (2006). How children and parents collaborate to negotiate meaning: Studies on language acquisition in autism, Dissertation: University of California, Los Angeles.