Child and Youth Care Perspective on Disability

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Table of Contents

Introduction
Describing Autism
Comparing Disability Perspectives
Child and Youth Care and Autism: A Perspective on Disability
Conclusion
References

Introduction

Applied Behavior Analysis (ABA) and its type, Intensive Behavioral Intervention (IBI) are the interventions for children with Autism Spectrum Disorder (ASD) that are currently being used by many professionals including the Child and Youth Care (CYC) ones (Bristow, 2015). However, the interventions have always been rather controversial and can be considered doubly controversial in light of the modern disability studies perspective.

In this paper, they are critically analyzed from the point of view of various models of disability and that of CYC. It is concluded that the current medical community approves of the interventions, but ABA and especially IBI cannot be considered in line with the current disability studies perspective since they perpetuate the construct of the “norm,” which has already caused CYCs to begin to raise concerns. As the medical and CYC communities transform, they move further away from the medical perspective, but for the time being, it stays dominant, and ABA and IBI remain extremely popular and proceed to “normalize” and damage children diagnosed with ASD.

Describing Autism

The medical term for autism is the Autism Spectrum Disorder (ASD), which, however, is a relatively recent development. This term is aimed at highlighting the fact that the ASD types are numerous and various, which results in different experiences for the majority of persons diagnosed with ASD (The Ontario Ministry of Children and Youth Services [OMCYS], n.d., pp. 9-10).

ASD is “one of the most common developmental disabilities” (OMCYS, n.d., p. 9). It embraces a variety of “complex developmental brain disorders that affect the way the brain works” (OMCYS, n.d., p. 9) that “come under the umbrella of Pervasive Developmental Disorder” (Leaf, Taubman, McEachin, Leaf, & Tsuji, 2011, p. 259). The origin of ASD is still unclear for the medical society, but it is assumed that the combination of genetic and environmental factors can cause it (OMCYS, n.d., p. 9). Nowadays, ASD is not curable, but there are interventions means that are aimed at “normalizing” the development of a child (Centers for Disease Control and Prevention [CDC], 2016).

Contrary to the popular belief, people with ASD are capable of learning, communicating, and developing related skills (Bristow, 2015, p. 66) despite their “issues” with “normal” teaching methods. ASD affects are typically united into three categories: “problems” with social interaction, specifics in language and communication development, and “strong interests and repetitive behaviors” (Leaf et al., 2011, p. 259; OMCYS, n.d., p. 9).

Eventually, all these effects have “a severe impact on overall adjustment and quality of life as adults” (Leaf et al., 2011, p. 260). Admittedly, the effects can lead to exclusion from the modern society and complicate the lives of many persons with ASD, but ASD can hardly be classified as impairment. From the data presented above, it follows that the issues related to ASD are a failure to recognize the diversity of humanity.

An example of ASD behavior is presented in Lambert’s (2013) article that is devoted to ABA introduction in the UK. Julie Barber has a son, Jack who is diagnosed with ASD. Since the age of three, he had been very picky about food, choosing only baby food and custard of a particular color. She felt that he could not get the right nutrients from these products, and while other aspects of his behavior were difficult to deal with, this one, in her opinion, endangered his health. Julie tried an ABA intervention, and Jack “normalized” to the point of eating “normal” food within one year.

Comparing Disability Perspectives

Medical Model

The predominant attitude to ASD remains that of the medical model perspective, the one that regards the person with a disability as the source of disability and even the “problem” (Harpur, 2012, p. 2). The medical model considers ASD to be a disease that is located in the child’s body, can be found by a parent, diagnosed by a medical professional, and is incurable but can be treated, preferably, from a younger age (OMCYS, n.d., p. 10).

Ableism is not outwardly supported by the medical model organizations, but it is difficult to claim that they are against discrimination when their practice is based on distinguishing ASD children as “abnormal.” The Canadian government, on the other hand, is outwardly opposed to the crudest forms of ableism such as direct or indirect discrimination. However, the policies and actual practice can differ.

For instance, in 2004, the Council of Canadians with Disabilities (2004) pointed out that even though the rights of people with disabilities were included in the Constitution of Canada since the 1980s, the Canadian environment could hardly be described as inclusive. Given the fact that OMCYS (2015, n.d.) supports ABA and IBI, it can be concluded that the medical model reflects the Canadian government’s ideas as well.

Modern Disability Studies

The medical model is being rejected and deconstructed by modern disability studies. The definitions of disability that had been supplied by the medical model were criticized as “partial and limited and which fail to take into account wider aspects of disability” (Oliver, 1990, p. 25). First, the “problem” is “moved” from the person to the world and society that fail to accommodate the needs of certain groups, which was proposed by the social model of disability; then the disability justice framework takes both the body and the environment into account, but it does proceed to deconstruct the medical model definitions. (Harpur, 2012).

Davis (2013) explains: “the ‘problem’ not the person with disabilities; the problem is the way that normalcy is constructed to create the ‘problem’ of the disabled person” (p. 1). Similarly, the idea of the “norm” is shown as less natural to it and more socially constructed. Davis (2013) demonstrates that the modern understanding of the norm developed relatively recently together with the development of statistics and, in particular, the work of Quetelet, who helped the “norm” or the average to turn into an ideal.

This ideal may be typical for the majority of the population, but it is bound to have deviations (that at the time would be labeled as probable errors), and Davis (2013) presents a number of works that challenge this understanding, focusing instead on diversity. While ABA fits in the medical framework, the ideas of modern disability studies are less likely to consider it a positive intervention.

Child and Youth Care and Autism: A Perspective on Disability

There is no universal, world-wide accepted view on disability in the Child and Youth Care (CYC) community. The International Child and Youth Care Network (2015) hosts a discussion on the matter, and its analysis demonstrates that personal views of CYCs are different, but a movement towards the deconstruction of the medical model is visible. Specialists share their opinions on the disability models, and some of them gravitate towards the social model while others apparently focus on the disability justice framework. In any case, it is apparent that the medical model does not work in the context of CYC.

It is understandable since the holistic approach is central to CYC (Bristow, 2015, p. 64). In fact, this approach is also getting increased acclaim in the medical sphere. In particular, in nursing, it presupposes deconstructing the typical medical model perception of health and attempts to refuse the concept of “norm,” focusing instead on the diversity of conditions and demanding the attention to the needs of the patient, including those that would not be considered a requirement for the medical model nurse (for example, the need for spiritual comfort).

Also, the context of the family, society, sociocultural status, and other conditions, in which the patient exists, is taking into account by holistic nursing (Dossey, Keegan, & Barrere, 2015). In fact, holistic nursing shows that the medical community is changing and moving away from what they represented at the time when Oliver (1990) dwelled on its failure to see the individual in the patient (p. 25).

In CYC, a holistic approach has its own definition. Basically, it means that all the needs, strengths, talents, and abilities of a child or youngster are being considered, which typically results in the family or other close people being involved. The education of the parents or other guardians is one of the parts of autistic CYC care. Nowadays we work to educate them on both needs and weaknesses and strengths and special abilities of their children.

We discourage parents from trying to push the children to be “normal,” and using quotation marks for this word is typical for CYC. For example, Bristow (2015) compares ASD to a “fingerprint” rather than a disease (p. 66). As it was mentioned, ASD is a spectrum of “disorders,” which implies that uniting them may lead to the elimination of personal experiences. Also, this metaphor is closer to the truth in highlighting the “normalcy” of ASD, that is, emphasizing the diversity of human beings.

Disability Response

Despite the tendency of refusing the medical model, CYCs are not unlikely to look for the means of “normalizing” children. The therapies that CYC can use (or, rather, direct a child or youngster to use) include, for example, speech, occupational, and sensory integration therapies (CDC, 2016, para. 7). As for the Applied Behaviour Analysis (ABA) and Intensive Behavioural Intervention (IBI), Bristow (2015) points out that some CYCs may find that these methods “contradict the approaches of CYC” (p. 65), but they are still widely used by CYCs when working with ASD children.

ABA and IBI

ABA is probably the most popular of the approaches to “normalizing” ASD children (CDC, 2016). In the US it is the “default” treatment for ASD (Keenan et al., 2014, p. 168). In Ontario, board schools are required to provide ABA as a part of their service (OMCYS, n.d., p. 9). Europe is relatively excluded from the trend, promoting an “eclectic” treatment for ASD (Keenan et al., 2014), but there do exist institutions that provide ABA (Lambert, 2013). In general, Europe is much less homogenous, and the rates and means of treatment vary across countries.

ABA is regarded as a “holistic and person-centered” approach to creating programs that facilitate “meaningful changes in the behavior of the individual” (Keenan et al., 2014, p. 167). The method is primarily concerned with encouraging “positive” and discouraging “negative” behaviors. The encouraging rewards typically include something that a child likes (several minutes playing a favorite toy); reprimands are currently discouraged but can entail taking the reward away or doing something the child does not want to do (Keenan et al., 2014; Lambert, 2013).

During his sessions, Jack Barber, the boy with the adverse eating behavior, was fed his favorite mustard as a reward in case he ate a small spoonful of regular food. If he got sick after trying the regular food, he was not allowed to have the reward and had to eat regular food again. Various analyses of ABA (including randomized controlled trials, social validity, and cost-benefit analyses) have been carried out, and most of them appear to indicate the effectiveness and validity of the method (Keenan et al., 2014).

ABA includes many varieties, one of which is the Intensive Behavioral Intervention (IBI). IBI can be described as an intensive application of ABA methods that are customized to the needs of a child (The Ontario Ministry of Children and Youth Services [OMCYS], 2016). The intensiveness results in 20 to 40 hours of IBI sessions per week; it is recommended for the children who have an “Autistic Disorder or a disorder considered to be towards the more severe end of the autistic spectrum,” and the assessment is carried out by the provider of the program (OMCYS, 2016, para. 5).

The outcome is typically measured with the help of IQ, which, as Davis (2013) shows, is the direct product of eugenics (p. 8), and “normal” school integration. Scoring 85 in an IQ test is deemed to be the “best outcome” since it signals the “normalization” of the IQ of the child (Thompson, 2013). However, ABA can also target a particular behavior only; in this case, the “normalization” of this behavior is considered the success (Keenan et al., 2014).

The efficiency of the methods in “normalizing” ASD children has been demonstrated by numerous studies carried out since the 1980s (Howard, Stanislaw, Green, Sparkman, & Cohen, 2014; Leaf et al., 2011, p. 260; Keenan et al., 2014). However, ABA does not guarantee 100% of “normalized” children (Keenan et al., 2014; Leaf et al., 2011). Jack Barber’s institution had been achieving the best outcome in about one-third of cases; another third demonstrated “moderate improvement,” and the rest could not be classified as such (Leaf et al., 2011, para. 20).

Despite this, Thompson (2013), for example, claims that ASD is treatable in case “effective methods are used with sufficient intensity” (p. 87). In other words, if an ABA or IBI treatment fails, it is considered that the method or intensity was insufficient.

Also, there is a specific to IBI outcomes: the maintenance of results, in the long run, differs across people who had received the treatment, even for the children with the “best outcomes” (Kovshoff, Hastings, & Remington, 2011, pp. 445-446). Kovshoff et al. (2011) discover that less intensive interventions are more likely to produce lasting results. However, given the fact that ASD is “incurable,” parents are often very willing to take up ABA, and CYCs are not unlikely to suggest it as well. Unfortunately, nothing is known about the maintenance of Jack’s behavior, but no one can guarantee that he will not return to his old habits.

Solution Analysis

The information presented above demonstrates that ABA interventions are not 100% good at “normalizing” children, but, for example, Jack did give up his habits and started to eat “normal” food. From the point of view of the medical model, ABA is very effective in treating an incurable condition (Keenan et al., 2014). However, modern trends in disability studies present another view on the intervention.

ABA specialists avoid the word “normalization” (like they avoid the word “punishment” for the negative behaviors) (Lambert, 2013), but ABA naturally presupposes a movement towards normalization. A behavior that is somehow “abnormal” is targeted, measured (for example, its frequency or duration can be quantified to track changes), and then interventions are chosen and carried out, and the outcomes are evaluated. The best outcome is, as was pointed out, the average score or behavior, that is, the “norm.” Thus, ABA can hardly correspond to the ideals of modern trends in disability studies: it is an intervention that is aimed at the “normalization” of children.

Also, OMCYS (2016) states that IBI is aimed at “breaking down the barriers that isolate children with autism from the world around them,” but for ABA, these barriers are located in the child and not, for example, in the “normal” teaching methods (para. 2). As a result, the idea of accepting or celebrating ASD is out of the question for this approach, which means that the children and their parents are coerced into thinking that they are wrong and “abnormal.”

It must be particularly difficult for the parents and children who cannot achieve the desired results or maintain them. As stated by Dr. Liz Pellicano from the University of London who heads its Center for Research in Autism and Education, anxiety and depression are prevalent in people with ASD, and letting them believe that they are abnormal is unlikely to help (Lambert, 2014). As a result, despite the best intentions to enable, ABA is very capable of disabling.

Another reason to criticize ABA is treatment strategies. It was mentioned above that “negative” behaviors used to be discouraged in the past. The methods of discouragement (aversives) varied, but they involved corporal punishments and psychological pressure. Nowadays, such interventions are not encouraged; Keenan et al. (2014) state that “punishment is no more advocated in ABA than elsewhere in modern-day society” (p. 170).

Today, the main consequence of the inappropriate behavior is the lack of reward or, occasionally, a task that a child does not want to do. However, it is still a questionable approach, especially when young children are concerned. For instance, Julie Barber did consider quitting because of the distress and sickness that Jack could experience when he received the food he did not want. Apart from that, IBI as a particular form of ABA has attracted criticism for being demanding, especially for young children, since IBI is typically aimed at early intervention (Lambert, 2013). Similarly, there are concerns about the “robotic” nature of learning (Lambert, 2013).

Finally, it may be pointed out that there is an opinion, according to which ABA is similar to dog training (Lambert, 2013, para. 4), although it is definitely not a common opinion. Still, it does imply that for parents and people with ASD who do share this opinion, ABA is not a respectful, dignified intervention.

Lessons Learned (and to Be Learned)

The example of ABA shows that the methods which are not too controversial from the medical point of view can be controversial from the point of view of the disability justice perspective. The current trends in disability studies are obviously opposed to the idea of “normalization,” and they highlight the importance of a person’s individuality and dignity. ABA is a medical model approach that locates the disability in the child, measures its severity against a “norm,” and produces “customized” solutions that all boil down to a kind of training with a carrot and, occasionally, a stick. Given the fact that CYC is incompatible with the medical model, it is not surprising that, as pointed out by Bristow (2015), we begin to move away from the method.

This tendency is not very distinct for a variety of reasons, but the main of them is probably the pervasiveness and popularity of the medical model and ABA as such. This popularity, on the other hand, is caused by the method’s effectiveness in “normalizing” children. For instance, in the case of Jack, his mother was genuinely scared for his well-being. Unfortunately, Lambert (2013) does not dwell on the consultations that the woman had with doctors, but her concern is understandable, and her worry made her disregard her personal disapproval of the method.

For the time being, CYC is in a transitional state: we have not adopted the disability justice perspective, but we are moving towards it (together with other specialties that are concerned with children, including medicine).

I think that adopting this perspective just to take a look at interventions like ABA from another point of view is very insightful: it indicates the issues that otherwise are invisible. In the case of ABA and IBI, it shows that there are hidden costs to these interventions that parents can fail to notice. It is our job and responsibility to demonstrate to them what their decisions can cause. Eventually, though, CYC is bound to achieve the understanding of the disability justice framework since neither of the previous models can properly support this discipline.

Conclusion

The attitude towards ASD in the modern environment appears to be rather heterogeneous. The medical model still exists and dominates, which pushes parents to seek the ways to “normalize” their children with the help of various means, including ABA and IBI. The general attitude does not appear to spare CYC practitioners, which leads to them assisting in the “normalizing” attempts. At the same time, the society at large, including the medical community, is slowly deconstructing the medical model, which can be seen in the disapproval of ableism and the integration of the elements of the social justice system.

The latter is best suited for CYC practice, and the awareness about it (as well as the social model) seems to be growing in the CYC community. The current state of CYC view on disability is a transitional one: the medical model cannot provide us with the tools that we need, which is why we are abandoning it, but I cannot say that we have universally accepted a social or disability justice framework. It can be concluded that the society is moving towards a disability justice perspective on ASD, from which ABA and IBI appear extremely controversial, and CYCs are among the champions of this view.

References

Bristow, Y. (2015). CYCs and ASDs: a Child and Youth Care Approach to Autism Spectrum Disorder. CYC-Online, 202, 64-66. Web.

Centers for Disease Control and Prevention. (2016). Autism Spectrum Disorder (ASD): Treatment. Web.

Council of Canadians with Disabilities. (2004). Twenty Years of Litigating for Disability Equality Rights: Has it Made a Difference? Web.

Davis, L. (2013). Normality, power, and culture. In Davis, L. (Ed.), The disability studies reader (pp. 1-12). New York: Routledge.

Dossey, B., Keegan, L., & Barrere, C. (2015). Holistic nursing. New York, NY: Jones & Bartlett Publishers.

Harpur, P. (2012). Embracing the new disability rights paradigm: the importance of the Convention on the Rights of Persons with Disabilities. Disability & Society, 27(1), 1-14. Web.

Howard, J., Stanislaw, H., Green, G., Sparkman, C., & Cohen, H. (2014). Comparison of behavior analytic and eclectic early interventions for young children with autism after three years. Research In Developmental Disabilities, 35(12), 3326-3344. Web.

Keenan, M., Dillenburger, K., Röttgers, H., Dounavi, K., Jónsdóttir, S., Moderato, P.,…Martin, N. (2014). Autism and ABA: The Gulf Between North America and Europe. Review-Journal Of Autism And Developmental Disorders, 2(2), 167-183. Web.

Kovshoff, H., Hastings, R., & Remington, B. (2011). Two-Year Outcomes for Children With Autism After the Cessation of Early Intensive Behavioral Intervention. Behavior Modification, 35(5), 427-450. Web.

Lambert, C. (2013). Is it right to try to ‘normalize’ autism?The Guardian. Web.

Leaf, R., Taubman, M., McEachin, J., Leaf, J., & Tsuji, K. (2011). A Program Description of a Community-Based Intensive Behavioral Intervention Program for Individuals with Autism Spectrum Disorders. Education And Treatment Of Children, 34(2), 259-285. Web.

Oliver, M. (1990). The politics of disablement. London: Macmillan Education.

The International Child and Youth Care Network. (2015). CYC view of disability?. Web.

The Ontario Ministry of Children and Youth Services. (2016). Intensive Behavioural Intervention. Web.

The Ontario Ministry of Children and Youth Services. (n.d.). The Autism parent resource kit. Web.

Thompson, T. (2013). Autism Research and Services for Young Children: History, Progress, and Challenges. Journal Of Applied Research In Intellectual Disabilities, 26(2), 81-107. Web.

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