Presented at ISEC 2000

Home-Based Early Intervention in High Functioning Autistic Children

Lia Kaderoglou - Atherns University, Greece

Contributions from: Loretta Thomaidis.

Abstract

The study examines the implementation of a modified programme based on Portage early intervention curriculum in seven high functioning autistic children. The families shared similar social and demographic characteristics and the children had the same age an approximately the same age of developmental functioning. The effects of the intervention after one year period were particularly encouraging since children made considerable progress in all areas of development and especially in cognitive and language skills. Furthermore parents and especially mothers who participated more actively in the programme became more aware of the special difficulties and talents of their children and adopted realistic expectations for their development. Family based early intervention including parents in the educational process after the appropriate modification seems to be effective in cases of high functioning autistic children.

Despite the international research efforts in the 80's and 90's, autism remains a less recognised and even less understood disorder, even by those professionals who are most likely to come to contact with a child with autism.

This is because there has been a rapid refinement in the definitions of autism including much more subtle differences in normal development and communication patterns compared to old definition of classical autism.

Nowadays, a child may show physical affection, display a positive flare for building blocks and jig saw puzzles, show some degree of eye contact, etc. Nonetheless, the same child's lack of joint attention skills, gaze quality and communicative reciprocity may give him/her the diagnosis of autistic spectrum disorder.

Autism manifests its self like an iceberg. One can only see one tenth of its actual size above sea level. This easily viewed part of the iceberg is language and communication disorder but its severity varies enormously from one child to the other. Nonetheless, despite any disparities that might exist in sub-groups of the autistic spectrum Gillberg, Frith and Happe agree that different forms of autism share an insufficient or distorted understanding of communication patterns and the reciprocal nature of linguistic behaviour.

Autistic toddlers with some level of functioning are a very vulnerable sub-group of the spectrum. Teo Peters once described these children as having the "oops...wrong planet syndrome". These children can so easily be left without a diagnosis just because they have certain skills that may mask the problem. Sometimes it is difficult for the parents to admit the existence of problems while other times parents have a hard time to convince professionals that there's something wrong with their child's development. For this reason it is clearly understood that multidisciplinary assessment and diagnosis is of great importance. However even the absence of a reliable diagnosis should not prevent early intervention from taking place.

Children with autistic spectrum disorder do not outgrow their symptoms without help. On the contrary we believe that early intervention can unfold a hidden potential that could later on label these children as high functioning.

A child experiencing such difficulties is influencing the life of the whole family with his deviant forms of behaviour. Therefore the family needs support not only for understanding what autism is but mostly in terms of planning and realizing of the educational structures of everyday life that are necessary for the child's better social functioning. The child with autism needs to be offered a possibility to organize his internal world. Frith, Gillberg, Jordan & Powell stress that the earlier the ways in which the child's behaviour follows ordinary developmental lines are recognised and supported, the better the basis for the development of language and other skills. Thus, parents, the child's natural caretakers should be given the chance to understand and handle their child at home as early as possible.

This paper presents 7 cases of children with autistic spectrum disorder and their improvement after one year of individualized early intervention program with the parents as co-therapists.

A case study approach was used treating each child and family as their own control avoiding the logistic problems of having to go far afield to find a matched sample. Therefore, the paper reflects the strengths and limitations of an action research design. The data is necessarily qualitative in nature however using tested baseline and outcome measures.

Seven children with autistic spectrum disorder were selected to receive a home-based early intervention program with their parents being the essential co-therapists. The eligibility criteria were the willingness and the availability of the mothers/fathers to commit them selves at the intervention project and the initial age of the children which was decided to be under 42 months (Table 1).

Before the intervention the children were rated with the Childhood Autism Rating Scale (C.A.R.S.) as children with severe autistic behaviour. Children's progress was measured in terms of acquired skills compared to baseline using Portage Developmental Checklist which is a user -friendly tool especially for parents. It covers the domains of Language, Cognition, Socialization, Self-help and Motor. The multidisciplinary team (physicians blind to the intervention) cross checked children's progress with pre and post intervention testing using Griffith's Developmental Checklist and Reynell Developmental Language Scale. These assessments along with parental perspectives drawn from interviews provide the necessary triangulation of data that acts as a wall to personal biases.

The intervention

The intervention has been a combination of five different well known early intervention programs:

Portage Program's philosophy of treating parents as partners and therapists of their own child was the cornerstone of the intervention. Nonetheless, it has been necessary to enrich Portage curriculum with directed activities from Carolina Curriculum and readiness activities and techniques from the work of Ivar Loovas. Visualized daily schedules of appropriate directional and non-directional activities stemming from TEACCH program were also used. When sound imitation has been very low, alternative means of communication were introduced using PECS only to abort it later one when communicative language started to emerge.

Each family received a tailor-made program designed to suit the needs and talents of each specific child and family. Individualised educational plans were designed from the E.I. Advisor and the parents through weekly meetings that lasted from 2 to 4 hours. Parents started to learn how to facilitate communication with their child and how to teach the child new skills and improve his social adaptation. A weekly activity chart with clearly defined targets to reach within the week was left for the parents to follow. Parents engaged 21 hours per week in instructional intervention activities with their child. Also all children were placed in mainstream pre-school units but with no form of support given to them during their school hours.

Table 2 shows CARS scores and communicative baseline before the intervention. Table 3 presents frequency and degree of common autistic behaviours before the intervention while Table 4 shows differences in these characteristics after the intervention. We can examine the progress pattern of all 7 cases that is presented with Chart 1, Chart 2 and Chart 3. Chart 1 corresponds to the number of Portage Checklist items that were achieved in each developmental area after one year of intervention while Chart 2 and Chart 3 present pre/post test scores of Griffith's developmental Checklist and Reynell developmental language scale respectively.

All cases regardless of minor differences follow the same pattern of progress. The developmental domains mostly affected seem to be the cognitive and language domain. The social domain has shown the least changes in all cases. Cognitive and language domains rise considerably after the first year of intervention. This finding is important for two reasons:

a) Unfolding and facilitating cognitive potential can prevent later inability for learning and this has been clearly shown in animal studies as well (Nichols et al, 1992). It is well know that early intervention is a critical period for brain development. Brain pathways that are not used are lost through neuronal atrophy. b) Neural pathways necessary for the development of language if left atrophied from lack of stimulation will make language acquisition extremely difficult to happen at a later age.

It is generally believed that the earlier the intervention begins the more the process of neuronal loss can be reversed. Cohen (1994) suggests that with stimulation extra neurons are able to take over the function of deficient areas in order to overcome the disorder. In our small sample we witnessed two differences in children's progress patterns. Case2 who was indeed the youngest one, made an exceptional progress in the domains of language and cognition (Chart 4 and 4a). Later on he was found to be a gifted child with an IQ that would remind us of Rainman's or Mr Bean's social attitude and exceptional skills.

Case3 (Chart 5 and 5a) who was the oldest one followed the same pattern of progress. Nonetheless, he had a late language onset when compared with the rest of the cases. In fact, it took him nine months to develop expressive language and he was the only child that used PECS for quite a long period of time (Table 5). Could we suggest that such pattern could be due to his initial age of 42 months combined with a 44 CARS score and a mother who received no further social support?

The social domain is the developmental domain with the fewest acquired skills in all seven cases. The Social domain of the particular checklist is not refined enough to depict small - scale successes one can expect from children with autistic spectrum disorder. Nonetheless, these few skills if examined qualitatively show a big difference in overall social behaviour. Indeed, Portage |Checklist items like "Co-operates with parental request 50% of the time" can include a lot of behavioural changes in a child's outlook. Furthermore, items like "makes a choice when asked" or "takes part in a game" had been big successes for these specific children.

Further examination of Chart 1 shows that Case 4 and Case 6 display a larger progress in social skills when compared with the rest of the children. Observing Table 1 we can trace three common variables:

Furthermore, examining Table 2 and Table 3 we witness that these two children were the only children with a better communication baseline on their initial assessment:

Could these features be considered as future progress indicators when initial assessment of the children is conducted? Here we find the necessity for further quantitative research that could probably test these findings using larger samples.

Last but not least, parental perspectives are depicted after the analysis of semi-structured interviews that were conducted after the end of year 1. Table 6 shows the themes that were covered through the interviews. Table 7 reflects parents' opinions.

Parental perceptions of their child's development were found to be quite accurate. This might mean that they developed more realistic views about their children by working and learning more about autistic spectrum disorder. All parents valued the human factor of the program rather than the program curriculum or its components. They believe that parent-interventionist partnership depends both on personality features of the "expert" as well as on his/her professional expertise. Mutual trust and sharing comes straight from the heart and only then one can ensure a true partnership that facilitates an overall family's well being.

Summing it all up our findings were the following:

· parents were effective teachers

· children showed progress in their development

· biggest progress found in cognitive and language domain

· degree of eye-contact, expressive language and comprehension of 1-step directions maybe future progress indicators

· parent - "expert" partnership requires mutual trust and sharing

· home-based early intervention for autistic spectrum disorder can improve the quality of life for the whole family

· home-based early intervention for autistic spectrum disorder needs to be flexible in order to address the needs of each specific child and family. No recipe or "Bible" can "cure" autistic features.

The last finding reflects this project's initial philosophy. By designing individual intervention plans, combining elements from some of the most known early intervention programs available, the intention was not to produce another miracle "cure" for Autistic spectrum disorder. Instead, after the completion of all the phases of this project (year 2 and year 3) we intent to offer a model of good practice. This model will be introduced by a package of guidelines aiming both to diagnosis and intervention alternatives that parents and professionals working with children with Autistic Spectrum Disorder can utilize.

Table 1

F.F.S= Family's Financial Status

+ = barely a living

++ = low to medium yearly income

+++ = medium yearly income

++++ = high yearly income

F.S.N. = Family's Support Network

_ = no support from spouse, parents, in-laws, friends,

C.S.S = support from spouse

P = support from parents

I = support from in-laws

F = support from friends

C.S. = support from community services

Table 2

C.A.R.S. scores classification: 15 - 30 = Non- Autistic 30 - 36 = Mildly- Moderately Autistic 36 - 60 = Severely Autistic

Table 3 Behaviors before the intervention

+++ excessive amount of the behavior daily (more than 10 times)

++ present many times daily (more than 5 times)

+ present few times every day for the whole week (2-3 times)

_ present less than three times per week

Table 4 Behaviors after the intervention

+++ excessive amount of the behavior daily (more than 10 times)

++ present many times daily (more than 5 times)

+ present few times every day for the whole week (2-3 times) _ present less than three times per week

Table 5 Initial Age, L.A.O. ( Language Acquisition Onset) & C.A.R.S

Table 6 Interview issues

POINT 1: Was the child's development been boosted through intervention and if so, how?

POINT 2: Did the parents felt they received support for their nurturing / teaching role?

POINT 3: In what ways did the parents receive support through the program?

POINT 4: What are the developmental areas of the child that were most affected from the intervention?

POINT 5: Was there a true partnership of parents/experts?

POINT 6: What are the parental aspirations for their child's future?

POINT 7: Suggestions for future planning of similar intervention programs

Table 7

POINT 1: All parents reported that their children's development was boosted mostly because of the carefully designed individualized program that was available for them to follow. Four parents felt the progress was made because they were trained to be more able to cope with their child's challenging behaviors. Three parents stated that the most important kind of help had been their empowerment to create new daily living rules and clear structures that helped their child to better social adjustment.

POINT 2: All parents stated that the program targeted mostly in fostering and organizing their own efforts so that they would help their children's development in the best possible ways.

POINT 3: All parents reported that they received support mainly through the personal relationship that was slowly cultivated between them and the interventionist. Five parents felt that they experienced a power swift that helped them take control of their life and their children's development. Six parents appreciated taking an active role in their children's educational plan. All parents reported they had access to information concerning other agencies, community services and legal rights.

POINT 4: All parents stated that their children's development was mostly affected in cognitive domain, language development and basic communication skills. Six parents also reported that disruptive behaviors were also reduced dramatically.

POINT 5: All parents suggested that true partnership was built because of the following elements: A) the interventionist and the team of doctors were not just doing the job B) all experts seemed they truly cared C) the parents trusted the interventionist for her expertise in autistic spectrum disorders D) parents - interventionist were discussing all problems that might arise during the week

POINT 6: All parents would like to further work on their children's social skills. All parents hoped to achieve their children's school and social inclusion.

POINT 7: Three parents suggested that support should be extended to school settings as well. All parents thought that all families in need should be offered such intervention schemes. Five parents stated that parents groups should be organized in order to enhance the sharing of information. All parents would like information for such intervention schemes to be publicized widely.

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Index