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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Thursday, February 16, 2006


What Is Quality of Life?

Front and centre of this dialogue about autism is inclusion. At the heart of the matter, understanding and acceptance that people with autism and other disabilities is needed, and as parents and people diagnosed with ASD, we need to keep up aggressive dialogue and awareness-raising so that equality can be achieved.

Too often, “mainstreaming” and “integration” are touted as goals for children with autism without recognizing the missing components that make this successful. As mentioned in recent posts by Autism Diva, and Elmindreada, “mainstreaming” currently leads to bullying because children are not taught to accept difference, and integration is mere lip-service as schools try to integrate by have little idea of how to successfully include and educate children with learning differences. As Adam and I prepare for entry into JK, I think long and hard about what we are in for in terms of prejudice, snubbing by his peers, and his need for a different mode of learning in order to achieve the quality of life I believe we are all referring to.

When we talk about quality of life for people with autism we usually talk define it in subjective terms as “being happy,” “being fulfilled,” “having a job,” “getting married.” While these should still remain goals, we cannot reach them if we do not acknowledge the missing links in the system that result in endless obstacles.

In essence, we are talking about a paradigm shift in thinking – an evolution of how we view disability. While it has changed significantly over the years, we still run into a general concept that “quality of life” for people with disabilities is the physical care of them, while ignoring other spiritual needs -- as caregivers do not believe these needs are at all present or desired in people with disabilities.

So what is quality of life for persons with disabilities? Society, for the most part, still largely shoves its differently-abled members in places where it will not disturb and perturb them, where it will not agitate their homogeneous state. As I noted in my post Smack Dab in the Middle, a recount of my first visit to the MukiBaum Centre for Complex Disabilities in Toronto, my personal prejudices, despite my having a child with autism, were all too notable. In this recognition of my state, and how I arrived to it, I realized how hard we must work to include the heterogeneous members, the disabled members, into our communities more rigorously.

Nehama Baum, PhD and founder of MukiBaum, talks extensively about quality of life for people with disabilities, and the power of art education in embedding a sense of self and identity. In her paper, “Enhancing the Quality of Life of People with Dual Diagnosis: The Power of Art Education" (The Journal on Developmental Disabilities, December 1997), she notes through her research that “[people with disabilities] are seen [by their caregivers] as not being able to make decisions because of a lack of intellectual ability, and more simply, because they do not know how. The perception is that they cannot interact because they are acting out and they do not possess talents because people with developmental disabilities are not capable of creativity. As a result of these long-held beliefs, caregivers have felt that their role was predominantly to care for the physical needs of the people in their charge and to ensure that they comply with what the caregivers perceived to be the `best for them.’”

As I continue to evolve the way I myself view disability, autism, and my son, I consider in this last statement, all the therapies and modes of autistic education that teach compliance because “it is best for them.” Is it? In doing this, are we truly accepting and understanding the difference? While I cannot entirely change my viewpoint (I have my limitations), I will still want Adam to pay attention when he is learning, or when I am speaking, but perhaps I will also be able to adapt and empathize that he comes about things differently.

Baum goes on to define quality of life encompassing these basic human needs:

Being = refers to one who is an individual
Belonging= refers to a person’s fit with his/her environment
Becoming=refers to the intentional activities a person becomes involved in when striving to achieve goals and actualize wishes

We must ask ourselves if the scientific communities and organizations like NAAR are enhancing these opportunities for personal power of those with autism in their use of phrases like “epidemic” and other negative semantics that paint a picture of people with autism as slightly less capable, a little less than human. In preparing marketing campaigns and slogans for the purposes of fundraising, what damage are they doing to the ongoing struggle to obtain “equal rights” and acceptance of people who are different?

“Reiss, Levitan and Syszko (1982) observed that, in many cases, when an individual has a developmental disability, other aspects of his/her life are not acknowledged. Reiss et al. called this phenomenon `overshadowing.’…Such perceptions influenced the development of services that were provided to these individuals over the years (Menolascino, 1994). Programs for people with dual diagnosis tended to emphasize teaching based on the perceived deficits of the individual, without taking into consideration areas other than practical skills for living and adaptive behavior. Such programs gave little attention to exploring and developing the potential of these individuals…Furthermore, this approach has also emphasized behavioral interventions with externally imposed standards of appropriate conduct. No acknowledgement was given to other possibilities. Therefore, programs that accentuated such areas of life as creativity, artistic talent, inner growth, cultural identity, economic self-sufficiency and community inclusion, were not developed.” (p.103)

Organizations like NAAR, Autism Speaks, Cure Autism Now, many behavior analysts (not the evolving ones), many peddlers of autism products, diets, cures, some scientists, even some parents ascribe to a reductionist view of the person with autism – a judgmental view regarding a person’s Being. (see yesterday’s post on Do Animals Have Feelings, Do Autists?). “For example,” states Nehama “if it is assumed by others in his or her environment, that an individual is manipulative, suspicion about the motives of all the person’s interactions may develop. Similarly, when an individual is evaluated as an `aggressive behavioral problem,’ the social environment might become more rigid in its expectations and more restrictive in its allowance of freedom and choice. In turn, this increased restrictiveness could affect the individual’s ability to intentionally choose goals, initiate activities, adapt to life changes, and develop as a person (i.e.; the Becoming area of life).”

When Dr. Joseph Buxbaum indicated the plight of parents, and I hear parents who want a cure for autism because their kids are banging their head against the wall, I consider that these components of enabling a sense of empowerment and self have been ignored in exchange for the ongoing struggle to make our children “like us.”

Nehama goes on to say that while quality of life is a complex concept, with subjective and objective evaluation of physical, material, social and emotional well-being, the holistic approach touches upon many aspects of a person’s life and incorporates both empowerment and choice. (p.99) As much as the objective realm is important (housing, employment, income), “the subjective realm (social support) is comprised of a general feeling of well-being, feelings of positive social involvement, and opportunities to fulfill one’s potential.” (p.102) I do believe that fulfilling potential is the utmost goal for Adam because I see so much potential. As a curator of art, this was also apparent in the work of Jonathan Lerman – how the spiritual side of him is still growing, exploring and is utterly intact (see my side-bar for video footage of the exhibition).

“In order to enhance quality of life of individuals with developmental disabilities…an added effort has to be put into developing opportunities in both the objective and subjective dimensions. In doing this, there needs to be an emphasis on creating a balance between them. This should be a process that is person-centered and person-referenced, but that also takes into consideration environmental realities.” In her studies, art (painting, drama, movement and music) “are psychodynamic therapeutic modalities for the promotion of consciousness, emotional growth, and well-being of children, youth and adults with dual diagnosis.”(p.103)

In my posts Sensing the World Into Existence, and On Becoming a Self, I also explore the a need to enable self-fulfillment, actualization and awareness through sensing, art, and acceptance. As we learn to appreciate and accept people with autism, as we begin to think about and define what we mean by quality of life for people with differences, we will be able, as parents of children with autism and as adults with autism, advocate for the supports that will enable a sense of SELF. Even more important, we will offer people with autism empowerment and choice over their own destiny.


Blogger Jannalou said...

Thank you for this - it's the exact kind of thing we'll need if we're going to do a study on outcome as related to treatment.

(Not that I expect to be the one doing the study, but at least someone's taken the time to explore the question of what quality of life actually is.)

2:13 PM  
Blogger Lisa/Jedi said...

I resonate very much with your perspectives! I, too, find the idea that autism needs a "cure" quite repugnant & disrespectful of my child. I have told him more than once that I would never change any bit of him, because I might lose the whole him that I love! OK. Does my kid sit in a corner & rock? No. Does he whack himself perseveratively, sometimes hurting himself? Yes, but we're trying to help him get beyond this behaviour using gentle & respectful methods. I think that parenting any child requires walking the fine line between having expectations & letting them be free to discover who they are, & it's just as true for we who have kids on the spectrum. What I have found is that nearly every person who has met my son finds they have been enriched by their encounter. If I have a life-goal for him, it's for that experience to become reciprocal, so that he may be enriched by those he meets. Thanks for your continuing insights, Estee! :)

7:38 PM  
Blogger Estee Klar-Wolfond said...

Wonderful, thanks for sharing, Lisa. I do agree its a fine line. Acceptance is not just a word, its an experience and a journey,


8:46 PM  
Blogger SquareGirl said...

Wow! I feel that you've read my mind and captured every idea I have about autism, yet with so much more beauty and eloquence than I could have ever have imagined...thank you so much for this post! Amen!

12:47 AM  
Blogger Zilari said...

I agree with Squaregirl's sentiments...often times I read your posts and feel I should comment, but then I realize there's not much I can add. Your son is SO lucky to have a mother who sees him as a human being rather than a problem.

2:23 AM  

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