Structure in the Home

Setting Expectations

Preparation for Big Events

General Procedures

Here is this info as a Printable PDF, in case you’d like to share it. Good luck! Please share any of your own holiday tips if you wish!

Common Holiday Scenario in Autismville:

Parent: Ok, let’s pick out a gift for Mama
ASD child: NO. I want elmo/thomas/Xbox 360!
Parent: Yes, I know. At Christmas we give gifts to other people. What would Mama like?
ASD child: I don’t know.
Parent: Well, do you want to get her this necklace?
ASD child: No.

This scenario is even more awkward for a single parent attempting to help their child pick out or make a gift for them.

This year, Empower Autism is hosting an alternative method for gift-giving. We are structuring the gift process so that kids create presents for their parents with the help of our volunteers. They help wrap them up, label them and bring them back to their parents (who are munching snacks and socializing in another room if they wish).

When: Sunday Dec 11th 3-5pm
Where: UNCA (New Hall room 118)
Cost: $5/child
Please RSVP via email sylvia@empowerautism.com if you would like to attend. Let us know how many adults and kids to expect.

Here is the first question:

Dear Sylvia,
How can I get my 9 year old son to complete daily activities like homework and cleaning his room without fear of provoking a backlash or even a meltdown? He does well in school when he finishes his assignments and I know he can clean his room and do other chores because he has done them in the past. Lately he just refuses to take directions from me. –Tired of Walking on Eggshells

Dear Tired of Eggshells,
Sounds entirely frustrating! I agree that your son should be able to accomplish some daily explanations without melting down. You mentioned in your submission that your son uses a schedule in the morning and earns time on his DS on the way to school if he finishes his morning routine. Have you tried a similar system for the afternoon? You might make him a list of stuff to do when he gets home (including some downtime) and let him earn some stuff he really likes such as videogame time. The schedule and the reward-earning could take some of the power struggle out of the afternoon, and add some predictability. Check out these handout on Structure in the Home and Rules and Rewards for a place to start brainstorming.
For example, his afternoon could go like this:
get off the bus
snack
30 min choice time: draw, go outside, play with trains (no TV or video games)
Do Homework
–Homework done? 20 min of video games
Clean room
Dinner
–room clean? 20 min of video games

You may need to present this new system to him in writing so he can get used to the idea. Here is handout on written explanations<.

GOOD LUCK! --Sylvia

The article in VERVE was totally well-timed to help us promote the event, and I would like to cordially invite all of you, dear readers. Let’s drink wine for autism!

READ THE ARTICLE

COME TO THE EVENT

One of the most rewarding parts of my job at the Autism Society of North Carolina was creating home-programs that included organized systems for addressing difficult parts of the day, social needs, developing maturing interests, and exploring employment possibilities. In these difficult financial times, many people are losing services like those the Autism Society provides, and there are not a lot of private options.

I’ve assembled a team of people at my business, Empower Autism, INC., who are well-versed in autism and family dynamics, and we are designing home-programs privately for family with autism. If you have something that just isn’t quite working in your family or your home, we can design a system or plan to help you address it. I believe that a REAL plan uses the strengths of a family, and fits naturally into the current pattern of the family.

We design creative, appreciative, plans that fit a family’s lifestyle, and we make it affordable.

Give us a call, or send us an email to find out more.
(828) 919-0313. Sylvia@empowerautism.com

Interesting Autism Studies:

Behaviorally Based Programming

Behaviorally-based autism interventions are widely popular, and have a large body of supporting evidence (Simpson, 2005). In the year 2000, Laura Schreibman wrote that “it is now widely acknowledged that, to date, the forms of treatment enjoying the broadest empirical validation for effectiveness with individuals with autism are those treatments based upon a behavioral model.” (Schreibman, 2000). Jonathan Campbell’s 2003 review of autism interventions found that, “First and foremost, behavioral treatments were found to be significantly effective in reducing problem behavior in individuals with autism” (Campbell, 2003). In addition to being valuable for autism interventions at any age, behaviorally-based interventions are also shown to be effective specifically for children age 0-3 (Sallows & Graupner, 2005Weiss, 1999).
In 1993, McEachin, Smith and Lovaas found early intensive behavioral intervention to have successful long term outcomes for young children with autism (McEachin, Smith & Lovaas, 1993). Jane Weiss took clinical data on 20 children with autism in 1999, each of which were involved in a home early intensive behavioral intervention (EIBI) programs, and found that their mean Childhood Autism Rating Scale (CARS) score decreased significantly after 2 years of treatment (Weiss, 1999). In 2002, Jenson and Sinclair wrote a review of Early Intensive Behavioral Intervention programs (EIBI), stating, “Research regarding the use of applied behavior analysis in EIBI programs for children with autism has consistently shown significant positive benefits including an overall increase in functional skills and cognitive performance and a decrease in autistic symptoms (2002)”. In 2006, Cohen, Amerine-Dickens, & Smith replicated Lovaas’ method of Early Intensive Intervention Therapy in a community-based study, and found it to be effective for infants and toddlers with autism (Cohen, Amerine-Dickens, & Smith, 2006). Behavioral techniques in early intervention programs are well supported (Jenson & Sinclair, Cohen & Sloan, 2007), and popular (Stahmer, 2007)

Parental Involvement

While some researchers studied behaviorally-based autism programs, other researchers studied the effects of parent education, or family participation, on outcomes for children with autism. Intervention with parents has been studied on multiple levels, including how parent education effects outcomes for the child, as well as how it effects the wellbeing of the parent themselves, which is also shown to be beneficial for the child (Schreibman, 2000). Several studies have found that having a child with autism contributes to parental stress (Howlin, Goode, Hutton, & Rutter, 2004). In fact, some studies have even stated that parents of children with autism experience more stress, and higher divorce rates than parents of children with other special needs (Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001).
Parent education programs are reported to have a positive effect on target behaviors for special needs children, including children with autism (Brookman-Frazee, 2004, Feldman & Werner, 2002). Moes and Frea found that by addressing (with parents) the specific context in which problem behaviors occurred, therapists could help families to decrease these behaviors in children with autism 0-3 years old (Moes & Frea, 2002). They also found that functional communication between parents and their young children with autism improved using parent training programs (Moes & Frea, 2002). Additionally, after participating in parent education programs, parents of children with developmental disabilities reported increased quality of family life, and greater self-efficacy(Feldman & Werner, 2002), and family function (Tonge et al., 2006). In England, the National Autistic Society has developed The Early Bird Programme (Shields, 2001), which offers a 3-month program, including education on behavior management training, and parent support groups, with simultaneous early intervention therapy for the child with autism. This program was successful in decreasing parent stress at follow up (Sheilds, 2001). Sallows & Graupner (2005) found that the parent-managed treatment group in their behavioral program study achieved similar results to the clinic-managed group, even though they were administrating fewer hours of therapy each week (Sallows & Graupner, 2005). They write that, “Although many parent-directed parents initially made decisions regarding treatment that resulted in their children progressing slowly (e.g., using their treatment hours for ineffective interventions or pushing children to learn advanced skills before they were ready), resulting in frustration and occasionally “shutting down,” many parents then sought input from treatment supervisors and rapidly learned to avoid making the same mistake twice, becoming quite skillful after a few months.” (Sallows & Graupner, 2005).
The TEACCH program has involved parents in the clinical process since its inception, and credits its success, in part, to this (Mesibov, Shea, & Schopler, p. 10, 2005). Due, in part, to the aforementioned list of positive outcomes for parents and children with autism, parental self-efficacy, and parental empowerment have become ideal objectives in the mental health world (Dawson, 2008). In 2004, Brookman-Frazee summarizes the most effective ways for professionals to collaborate with parents of children with autism.“Overall, the literature has suggested a number of necessary components for effective partnerships: a) mutually agreed upon goals, b) shared expertise, c) shared responsibility, d) eco-culural fit, e) collaborative problem solving, f) a strength-based approach.”(Brookman-Frazee, 2004). Despite this helpful list, and its implied call for standardization, early intervention programs continue to collaborate with parents in varying degrees, using a wide variety of methods (Stahmer, 2007).

Language Learning

In addition to being behaviorally-based (Dawson, 2008, Sallows & Graupner, 2005), and family oriented (Schreibman, 2000, Odom & Wolery, 2003), quality early intervention programs should also focus their daily curriculum on language learning (Landa, 2007). For children with autism, language development is a significant predictor of independence and happiness later in life (Lord, 2000, Rogers, Hepburn, Stackhouse & Wehner, 2003), and by age 10-13, one quarter to one half of people with autism will not have acquired functional language (Sigman & Ruskin, 1999). This makes language curriculum vital for early intervention programs.
Joint attention has been widely established as a pre-requisite for acquiring verbal language (Kasari, Paparella, Freeman, & Jahromi, 2008). Defined as a “set of nonverbal, social-communication skills (Mundy & Crowson, 1997)”, joint attention behaviors, include imitation, social referencing, communicative gestures, and early productive language (Tomasello, 1995). At the age of early intervention (0-3), many children with autism are still learning this cluster of behaviors which professionals refer to as joint attention (Landa, 2007). Children who demonstrate joint attention, in the form of synchronized gaze with another, or pointing to an object of interest, also demonstrate more developed language skills at the time of the interaction (Dawson et. al., 2004).
Several measures of joint attention have been found to be predictive of language skill gain, including responding to pointing (Sigman & Ruskin, 1999), the frequency of joint attention interactions (Charman et. al., 2005), and the duration of those interactions (Adamson, Bakeman, & Deckner, (2004). It is possible that the attentiveness to another person, in which the child must engage, is what improves language skills in any of these scenarios (Kasari, Paparella, Freeman, & Jahromi, 2008). In any event, joint attention behaviors can be taught to young children with autism in an early intervention setting (Kasari, Paparella, Freeman, & Jahromi, 2008, McEachin, Smith & Lovaas, 1993, Whalen & Schreibman, 2003).
Joint attention skills also predict later language development (Charman et. al., 2003). Sigman & Ruskin indicate that joint attention skills measured at 4 years old (just past early intervention age), are associated with social and peer group behavior eight years later (Sigman & Ruskin, 1999). For children with autism, expressive language at 4 years is predicted by imitation skills at 2 years old (Stone & Yoder, 2001). Intervention programs that have access to children with autism 0-3 year old, should focus on language learning, because children who learn to use language, are shown to report increased happiness and independence as older children and adults (Lord, 2000, Rogers, Hepburn, Stackhouse & Wehner, 2003).

Intensity (hours per week) of programming

One of the most difficult early intervention best-practices to achieve, according to service providers, is the time requirement of at least 25 hours per week (Stahmer, 2007). This therapy duration recommendation has its roots in behavior analysis, a regimented, practice-based intervention utilized by Ivar Lovaas in the 1980’s (Lovaas, 1987). Several studies have tested the amount of time therapy time required to achieve increased IQ. (Anderson et al., 1987) provided 15 hours per week for 1 to 2 years (parents provided another 5 hours) and found that only 4 of 14 children achieved an IQ over 80 and were in regular classes, and all needed some support. (Erikeseth et al., 2002) provided 28 hours per week for 1 year. In their sample, 7 of 13 children with pretreatment IQ over 50 achieved IQ over 85 and were in regular classes with some support. (Sallows & Graupner, 2005) did a study observing the effects of 39 hours per week of clinic-provided treatment, and 32 hours per week of similar, parent-provided treatment, and found that in both groups, about half the participants increase their IQ scores from about 50 to 100. Currently, most early behavioral intervention programs call for 25-40 per week of intense interaction, and 50-100 learning opportunities per hour (Howard et al., 2005). In 2001, The National Research Council recommended that all children with an autism spectrum disorder receive:
Active engagement in intensive instructional programming for a minimum of the equivalent of a full school day, 5 days (at least 25 hours) a week, with full year programming varied according to the child’s chronological age and developmental level
(NRC, 2001)

Regardless of how difficult it is to implement, several research groups clearly state that young children with autism benefit from intense, lengthy, direct intervention. (Amerine-Dickens, & Smith, 2006, Howard et al., 2005)

Theory and Practice

While establishing best-practices for early intervention programs is difficult, it is arguably more difficult to interpret and implement those practices into a practical, therapeutic setting. This difficulty is increased if an intervention program has been running for some time, and needs to adapt in order to better meet the current best practices. Apparently, there is a divide in the autism community, between researchers and service providers (Bondy, & Brownell, 2004). Some researches doubt the willingness or ability of service providers to update their practices to reflect current best-practices, and some service providers feel that best-practices developed in research settings, with no thought to current practice, are not useful without methods to implement those practices (Stahmer, Collings, Palinkas, 2005).
In 2007, Aubyn Stahmer studied 80 early intervention programs in the United States, and found that while many of them implement some of the current evidence-based best-practices, most of them do not implement them all, and the ‘depth and quality of use’ of those practices were variable (Stahmer, 2007). For example, while many (96%) providers reported that they incorporated families of participants in their programs, only 73% of those offered parent education in the form of workshops or seminars, with the rest offering parents a chance to observe the program (Stahmer, 2007). A small 16% of programs offered parents feedback on their parent-child interactions, 14% included parents at team meetings, and only 10% used some form of communication, such as a communication book, or behavior log, between the program and the home (Stahmer, 2007). In general, Stahmer found that all but 2 of the programs she interviewed provided less than the 25 hours of treatment time recommended by the National Research Council (NRC, 2001). Since many children with autism receive additional services outside of their early intervention program, this might not be a problem, but since only about half of the programs Stahmer surveyed collaborate with other agencies, continuity characteristics such as similar goals, overlapping behavioral expectations, and communication systems might be occurring (Stahmer, 2007).

Conclusion

Interestingly, several studies state that certain characteristics of a child with autism can predict how much progress they make in early intervention programs (Ben-Itzchak, & Zachor, 2006). Harris and Handleman (2000) found that beginning therapy at or before 42 months, and having an IQ around 78 at initial intervention are predictive of being placed in a regular education setting after treatment (Harris & Handleman, 2000). Eaves and Ho (2004) found that 2 year olds with milder autism achieved more progress than their severely affected counterparts, regardless of the type, and amount of intervention received, and Tager-Flusberg and Joseph (2003) found that initial language ability predicts greater gains for children with autism, across several interventions (Tager-Flusberg and Joseph, 2003). Ben-Itzchak and Zachor (2006) wrote the following about their 2006 study of young children with autism:
Our findings reveal that children with higher initial cognitive levels and children with fewer measured early social interaction deficits show better acquisition of developmental skills. This is especially noted in three developmental areas: receptive language, expressive language, and play skills. In this study, the progress in receptive language domain is highly related to pre-treatment cognitive abilities and social abilities. Children with higher pre-treatment cognitive levels or with better measured social reciprocal abilities advance more in their receptive language than do children with lower pre-treatment cognitive levels and social abilities. Progress in expressive language is associated to a greater degree with the child’s social abilities, while progress in play skills is related to a greater degree to cognitive level. (Ben-Itzchak, & Zachor, 2006)
Ben-Itzchak and Zachor’s findings are consistent with those of Harris and Handleman (2000), and Howard et al., 2005), and indicate that there may be a profiles of characteristics in young children with autism which are more likely to benefit from specific types of early intervention (Ben-Itzchak, & Zachor, 2006).
In 2008, Development and Psychopathology published a summary of early intervention research for autism, written by Geraldine Dawson. Her article indicates that EIBI improves IQ, language skills, educational placement for children with autism (Dawson, 2008). Dawson writes,
“common features of successful early intensive behavioral interventions are, (a) a comprehensive curriculum focusing on imitation, language, toy play, social interaction, motor and adaptive behavior; (b) sensitivity to developmental sequence; (c) supportive, empirically validated teaching strategies (applied behavioral analysis); (d) behavior strategies for reducing interfering behaviors; (e) involvement of parents; (f) gradual transition to more naturalistic environments; (g) highly trained staff; (h) supervisory and review mechanisms; (i) intensive delivery of treatment (25 hr/week for at least 2 years); (j) initiation by 2-4 years” (Dawson, 2008).
Dawson writes that if all of these criteria are met, 50% of children with ASD will have ‘remarkable’ results (Dawson, 2008). Other researchers agree with Dawson on many of these points. Kasari, Paparella, Freeman, & Jahromi (2008), Landa (2007), and Sigman & Ruskin (1999) agree that early intervention programs achieve better outcomes when they focus on imitation, and other joint attention behaviors, to stimulate language development. Cohen, Amerine-Dickens, & Smith (2006), Jenson and Sinclair (2002), Sallows & Graupner, (2005), and Weiss (1999), agree with Dawson on the points that successful early intervention programs utilize evidence-based behavioral therapy for teaching, and for reducing behaviors that are incongruous with learning. Moes & Frea (2002) Feldman & Werner, (2002), Tonge et al., (2006) and Brookman-Frazee (2004), all show definitive research in favor of parent involvement in programs for young children with autism. Stahmer (2007), Erikeseth et al. (2002), and Howard et al.(2005), have established that treatment for early intervention programs should be delivered at the rate of at least 25 hours per week. Stahmer points out that while each of these elements of a successful program (behaviorally-based, family-oriented, focused on language learning, and delivered 25 or more hours per week), has been established theoretically, the practical application of these best-practices remains a challenge to the early intervention community (Stahmer, 2007).

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