The Purpose of Parenting Studies?

Filed Under (Family, Inclusion, Joy, Parenting, Research) by Estee on 29-05-2012

At IMFAR and with other researchers I meet, I am confronted with many requests to participate in “parent studies.” The purpose is to study what levels of stress, and how different it is to parent and autistic child. I am reticient to participate. What about parenting are the researchers trying to find? Are we attempting to affirm that life is harder with an autistic child? Of course, we have to ask what the researchers are hoping to find. Is the purpose to support parents, the autistic child, or both? Or is there a more insidious angle to this kind of research, that is to say, that autism itself is the problem? I know, that may sound blunt and provocative, but think about it. To what end are we really getting on with the business of helping autistic people contribute to society as autistic people? How are we really helping autistic people and their families with their quality of life?

Honestly, I don’t see the purpose in trying to affirm that life might be tougher with an autistic child in it, and I’ve written about that with the unconfirmed (by research) assumption that autism is the cause of increasing divorce rates here. All I know is that when Adam is happy and accommodated, I am very happy. If he is excluded, I too feel isolated. What is it that makes the perception of life harder, then? What about society could assist in supporting us all? These are some of the questions I wish the research would tackle.

A few parents and some commenters on other blog posts have stated that some parents, myself included, are in a state of denial by insisting that we find joy in our children. Asserting that your child is a joy is not a denial of the challenges that we all face. The act of assertion is the affirmation that our children’s lives are important and valuable. On all counts, Adam has been my greatest joy. Yes, I get stressed in trying to understand his discomfort. No parent wants to see their child in distress, and we can focus on that in some of our research.

Most of the stress we faced lived in incompatible circumstances. Once I could see that our environment had to be calm, and that there was no time for compromise with people who had no interest in supporting us, life became a little smoother. I’ve had four years to wrap ourselves in the warmth of the people who really care about us. Let’s face it, our plates are full and we don’t have time for everyone. Energy must be spent wisely.

I dont’ like to give advice, but I’ve had a few thoughts over the past few years about parenting an autistic child. If there is parenting stress, perhaps evaluate the other underlying factors that could be relating to the stress instead of just focussing on the autistic person in the family. This would include all of your relationships, including the one with yourself. Think about how you communicate about autism, and consider changing your thought patterns, attitude and language surrounding it. I know that as a mom of Adam, I’ve had to work, and continue to work, daily at my expectations and putting them in check. I look at my own anxiety levels and what I do to add or detract from the stress. Even when I’m at my limit, I accept bad thoughts and let them go through me. I express them in private and then my head is clear again to see Adam for the beautiful boy he is. My attitude is very important. Loving and accepting Adam has also helped me to love and accept myself, which wasn’t (and sometimes still isn’t easy). Yet what’s the point in having a double standard?

When others have accused me of being in denial of other people’s stress or autism itself, I came to learn that my approach was my way, the way I was raised and my survival mechanism. There is absolutely no one who can tell you how you should raise your autistic child, and the assistance out there is on the journey as much as we are as parents. And, by the way, we all have a right to enjoy our children for who and what they are! It is up to us completely to advocate for our children — our right to have and enjoy them, to be included in society, for a good and suitable education, for accommodation, for respect, equality, and excellent opportunities and living environments into our children’s adulthood. There’s no getting around it and no excuses. It sucks some days, but we can’t complain. We have to stick together and stop the urge of research and the typical population to pity us. Pity won’t get is the services we deserve. If we continue on the path, we’ll just get the dusty old van and the group home. Not to knock some of the individuals there who sacrafice and provide for our children on a daily basis. It’s just that I think people with disabilities don’t deserve dusty vans and the poverty line.

I just think we all deserve better. Parents feel stress because of the lack of support, accommodation and acceptance. We feel it because we are stared out in the check-out line, or at the park, or while waiting to get into school. We feel it when someone marks “retard” on the picnic table outside our kid’s school. Can you add ot the list? Yes, our children indeed have challenges. Stigma makes these challenges a whole lot more difficult. Now think of how the autistic person must feel.

On the up side, there are many couples and single parents who have found their niche and who have pulled together with stronger families because of the challenges that an Abelist society brings to us every day. There are friends who really pull for us and who believe in us as a whole, not a fractured, family. There are people rooting for us in every way. Here’s where to put our focus.

I have only one child. Sometimes I think the time I spend on Adam may be like raising a group of children, but he’s worth it. He’s worth doing the IEP, organizing programs, doing advocacy work, managing teams, people because there are so few autism services and programs suited for the autistic person. It’s like inventing the wheel over here. I don’t have to manage the jealousies of same-aged siblings who don’t understand why so much more time is spent with the special-needs child in the house, and even the sudden “adult” responsibilities they may feel. I know of many parents who do. We all have our own package of issues, though.

I hope that researchers doing parent-studies have these points in mind. Society’s view of disability has a great deal to do with how we parent, how we view our lives, how we convey autism and disability to our communities and future generations, and how we are supported. It’s not the fault of autism or the autistic child. We must be so cautious in slanting any research in this direction.

Normally Autistic

Filed Under (Autism and Learning, Computing/iPad, Development, Parenting, Play) by Estee on 24-05-2012

Adam had dental surgery this week and I’ve caught a cold. As we’ve both been recuperating on opposite ends of the couch — me with my copy of Betty , The Fountain of Age, and Adam with his iPad — I’ve been thinking what I saw at IMFAR and what I read on Facebook, and all the articles I read about autism. All that fretting and advice on what to do and what not to do, parents can drown in this stuff.

I offer a small insight to keep us afloat.

One of the sessions at IMFAR was about how the use of computers is bad for autistic children because it takes away from socialization. We seem to really fret about keeping our children engaged all of the time, and we particularly target the autistic ones. This post is about just letting things be some of the time. As I tell everyone these days, we are “normally autistic” around here.

During our last two days on the couch, Adam keeps checking in on me. He smiles, he tells me his ears and mouth hurt (his words). In between watching meaningless movies to eat up the hours, and when I have the energy to re-read Betty’s take on the media’s representation of the ageing population as a “burden” (ugh), I’m watching Adam and how he uses all this free time.

He’s cuddly, he has watched a few meaningless videos, tutorials on YouTube on the game Mindcraft, and he has been making up his own words on his iPad — “hotgod,” and “iceswim,” among others. He’s checked out his math programs, and tries hard, without my prodding, to draw shapes on it (he is particularly challenged with fine motor here unless he uses a weighted pencil). My child who required supported communication and who was once “a sight reader,” now spells phonetically and types independently. My child who has limited verbal ability can navigate Mindcraft and the Web. My child who “needs to be engaged all the time,” has used his time, well, pretty much the way I have.

I wish I could remember my own words and thoughts when the world beats in and makes me fret that I’m never doing enough for him, just because he’s autistic.

My First Impressions of IMFAR 2012

Filed Under (Research) by Estee on 18-05-2012

This is my first IMFAR 2012 in my hometown, Toronto.

Let me just say, I think that everyone who attends IMFAR should attend AUTCOM and AUTREAT and be exposed to autism conferences run by autistic people. Temple Grandin, in receipt of her Advocate Award yesterday stated “Researchers, you must do more work in sensory processing and visual thinking in order to improve our quality of life.” She noted that there are already hundreds of papers on Face Recognition.

I want to extend that thought. While we are trying to understand autism, we are not much advancing the understanding of how autistic people think and learn and how we can assist autistic people live and thrive in our society as autistic people. As I sit watching sliced brains all it up in orange, blue and yellow, I twitch. Autistic people are referred to as THE OTHER.

“Research provides the foundation for reports about and representations of ‘The Other.’ In the colonial context, research becomes an objective way of representing the dark-skinned Other to the white world. Colonizing nations relied on teh human disciplines, especially sociology and anthropology, to produce knowledge about strange and foreign worlds. This close involvement with the colonial project contributed, in significant ways, to qualitative research’s long and anguished history and to its becoming a dirty word.”

(From: The Landscape of Qualitative Research, Norman Denzin & Yvonne Lincoln).

There are quantitative and qualitative studies here, and I’m very interested in the how autistic people are being studied. The research uses the typical population for comparative analysis. Autistic people are being measured against the typical population therefore cannot be seen as they are. All I’m learning is what I’ve already been told over and over again: autistic people cannot measure up in the same way and manner as typical people, and that we view typicality and normalcy as our goal.

The studies here that I’ve seen use groups with High Functioning Autism, a term which is highly interpretive. Let’s assume, however, that this HFA group must be verbal and must be able to function fairly close to the typical population. This immediately rules out my son who is has limited verbal ability, has pronunciation differences, and some idiosyncratic language. Also, the study groups would exclude him becuase he has many neurological “tics” and “stereotypy,” and has very limited “typical social skills.” As such, it would eliminate the contributions of most of the autistic population who contribute through writing, music, art and more. What of autistic narration? How is that important and valuable instead of merely fascinating? What kinds of insights do autistic people have that some of the typical population may not? It is hard for me to find such presentations here at IMFAR.

Today I did attend sessions on Brain Imaging and fMRI Cognition, Motion Perception and Function and Reward Processing. The most valuable presentations, to me, were two:

Using Visual Strategies to Remember Verbal Information: An fMRI Study of Working Memory in Children with and Without Autism, E.J. Carter, D.L. Williams, J.F. Lehman and N.J. Minshew. and,

Increased Attentional Activation During Reading in ASCAn fMRI Study of Visual Language, J.R. Cooperrider, J.A. Neilsen, J.S. Anderson, A. Froehlich, M.B. Dubray, A. Cariello, A. Alexander, E.D. Bigler, N. Lange, and J.E. Lainhart.

While I’m uncertain of the reliability of fMRI studies, I am very interested in the results. In summary, autistic people have compensatory reading and decoding strategies. I asked the researchers if they’ve ever compared the autistic population to the dyslexic one (one that I tend to do). I am often tired of the comparison of autistic individuals to the typical population as the only measure.

Rather, because we know that the Dyslexic community faced many social challenges including marginalization, stigma, exclusion, and becuase it took the school systems a while to understand Dyslexia in order to teach dyslexics, how can we study and understand autistic visual perception and conceptual understanding and the way they utilize the visual in order to decode language and the verbal?

I’m off to the “Stakeholder’s Luncheon” now where Stephen Shore will be one of a few speakers. There are a few autistic individuals here, but nearly not enough.

How do we get these scientists at IMFAR to collaborate with autistic people more? How do we move from using autistic people as “subjects” to including autistic people as collaborators?

We have a lot of work to do. Apologies in advance for any typos as I sit in a crowded foyer.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.