Sunday, November 26, 2006

Autism sermon part 1...

In my posts over the past couple of weeks I’ve been talking about writing a sermon on autism that I finally gave at today’s service. It was 2 weeks of really hard writing, most of which disappeared into the ether as I changed the way I wanted to get my points across. The service went very well & there were many positive reactions to what I had to say, including hearfelt words from a family undergoing the diagnosis process right now, although I am still getting over the embarassment of exceeding the 20-minute limit for the sermon (I actually had a hot flash when I looked at my watch between the sermon & final hymn, I was so appalled...). There is just so much to say in order to paint a fully-dimensional picture of life with autism. I am serialising the sermon into 2 parts for the blog, so that it won’t be so lengthy to read at one time. So, without further ado...

Good morning. I’m speaking today about a topic very close to my heart: autism. It may seem odd to refer to something like autism as being close to one’s heart, but one of the things I am learning in my journey as the mother of an autistic child is that things that once seemed scary do not stay that way & can work their way into your heart very easily if you love the person connected to it. I asked Karen for the opportunity to speak today because I see autism mentioned more & more in the media & very often what is told is the negative story- we hear about destroyed families & distraught parents -as recently as a few days ago there was the story of an autistic child murdered by his father, who could no longer bear the burden of raising him & thought he was being kind by ending his child’s life. We don’t as often hear of the many families who are not only coping with their autistic children but are thriving. There are many misperceptions about what autism is & what it means to individuals, families, & society. This morning I’m going to do my best to tell you what I’ve learned about autism & our journey as an autism family in the 4 years since Brendan was diagnosed as being on the autism spectrum.

While writing this sermon I felt the presence of many people looking over my shoulder. People whom I respect & whose points of view on autism have shaped my own. There are other parents of autistic children, whose experiences are different, & yet have enough similarity that we can identify strongly with each other & support each other in our journeys. Adults with autism whom I have met, mostly online through the blog I started nearly a year ago in which I chronicle daily life with my autistic child, & others whom I have watched grow from childhood into adulthood, have shared their invaluable perspectives on their experiences with autism & given us keys to Brendan’s experiences as well. There are the professionals who have helped us by sharing their expertise & respecting us as a family & as individuals. Our family is there, too, & my husband, Charlie, who has picked up my pieces repeatedly as I’ve hit the wall in writing this sermon, & is the quiet anchor in our sometimes turbulent life. The person who looms largest over my shoulder, though, is Brendan himself. As much as I want to speak truly of my experiences as an autism mom, reflect what I’ve learned from all those looking over my shoulder, & make them proud of what I’ve written, I can never forget that I am speaking of, & to a certain extent, for him. As I composed this sermon I have endeavored to be respectful of Brendan, my dear boy, & the reason I am on the journey that I’m sharing with you today.

The term “Autismland” was coined by an online friend of mine, Dr. Kristina Chew, who writes daily of her family’s life with their autistic son, Charlie, in her blog of the same name. I asked her if I might borrow the term as my sermon title because it really captures an essence, for me, of life as an autism family. This kind of life can be so different from those of people we know that sometimes I do feel as though I’m living at a remove from everybody else. But not too far removed... The cards we used as birth announcements when Brendan was born said “It takes a village to raise a child”, & in Brendan’s case this is literally true. You would know, since this church community is a large part of the village that is helping us raise him. The village also encompasses the people looking over my shoulder, the growing number of people who support our family in many ways.

One of the things I’d like to do today is explain a bit about what autism is, since there is a lot of misunderstanding & misinformation about it. There is good reason for there to be confusion about what autism is. For one thing, it has only been recognised officially as being a separate entity from schizophrenia & mental retardation since 1980. For another, the characterstics of autism vary widely: from people who appear to be unaware of the world around them to hyper-verbal geniuses. Autism is called a spectrum disorder for this reason, although I believe it’s a mistake to think of autistic people as falling on either a “low-functioning” or “high-functioning” end of the spectrum, partly because these designations can become self-fulfilling prophecies for the people so labelled, & partly because they simply don’t convey the complexities of autism. It’s really more like a chinese menu, with one from column A & 2 from column B. In the case of Aspergers & Kanners Syndromes, a particular subset of characteristics from the autism menu that tend to occur together have been given the specific names of clinicians who in the 1940’s identified these characteristics & labelled them as syndromes, but these are both part of the autism spectrum. The threads that connect all people with autism are neurological differences that affect sensory perception, understanding of social conventions, & the way the brain interfaces with specific parts of the body, such as speech delays, fine & gross motor delays, & motor planning. Autistic people express their neurological differences in many different ways, particularly as it pertains to sensory issues. Some people may flap their hands or rock, in order to help them process or mitigate the information their senses are giving them, some may injure themselves, some may melt-down crying or screaming if sights, sounds, or smells become overwhelming. Some people are barely recognisable as having autism, with mild social difficulties or intense interests in specific topics, but who fly below the radar of diagnosis, or may be social misfits, but function well enough in society to avoid the label of autism.

Another common mistaken idea about autism is the assumption that a person with autism will exhibit the same behaviours all the time, or that apparent developmental delays are forever. Research is beginning to show that the growth curve of people with autism is longer than that of the neurotypical (non-autistic) population. This puts a whole new spin on the idea of life-long learning & it’s crucial to remember that evaluating anyone on the spectrum using neurotypical developmental timelines will give a false impression of their potential. With the development of devices designed to help with communication, & greater access to those devices, people who were once thought to be hopelessly autistic are communicating their unique insights & ideas about their lives, & slowly being accepted as the people of dignity & worth that society has up until now denied.

You may notice that I am using some carefully chosen vocabulary when speaking of people with autism. I am not trying to be “pc” with my choice of words. What I am trying to do is reflect the attitude that people of neurodiversity have a right to be respected for who they are. This does not mean that neurodiverse people should not have the benefit of appropriate education- including any therapy, device, or support that helps them live life to the fullest. But I truly question the right we have as a society to judge people of any diversity as “impaired” just because they interact differently with the world than the majority. I have come to this conviction by seeing how difficult it can be at times for my son & our family to fit into our society, which, for all the changes brought about by the disabilty rights movements & awareness efforts, still has an atavistic fear of those who are different, those who don’t seem normal.

When autism is mentioned in the media you will often hear people speaking of a cure for autism, as though it were an illness. Some people compare it publicly to cancer or AIDS, & many of these people are parents of children with autism. I disagree strongly with this point of view. Part of the problem is that, although there is research that has pinpointed the areas of brain that work differently in autistic people, there is a lot of misinformation floating around about the causes of autism. The best research so far shows that genetics are the most likely reason for autism to occur, & many families with autistic children can identify other members with autistic tendencies, perhaps a relative considered “quirky” but otherwise undiagnosed. It’s important to understand that other theories for the incidence of autism, such as mercury poisoning from vaccinations have not been proven to be true, & the case for environmental poisoning being the cause has yet to be investigated thoroughly. And although there is a widely-touted “autism epidemic” supposedly occurring these days, studies by the CDC have pretty much debunked this as well, citing better identification criteria for the apparent increase in autism cases over the past 2 decades.

Unfortunately, because there is so much fear surrounding autism, & the supposed epidemic, many quack therapies abound, targeted toward frantic parents who are desperate because their child is not following the normal progression of development. Some of these treatments are actually incredibly toxic, & can lead to the deaths of the children exposed to them. I can’t help but wonder what is so terrible about autism that someone would be willing to risk their child’s death in order to “cure” them? Some might answer that my child isn’t “low-functioning” like their child, that “normal” life for their child is hopeless without a cure. I can’t speak for any parent but myself, but I do not look for a cure for my child because I don’t believe he needs to be “normal” by society’s standards in order to be worthwhile. I believe that all life has worth & would not risk changing who he is intrinsically by wiping out his autism. And there really is no substantiation for the claims of people cured of autism, outside of the potential they already had & the fuzzyness of the edges of what we conceive normal to be. In spite of all the claims-chelation, special diets, or hormone injections, there is no cure for autism- no magic pill or therapy, either behavioural or medical, that will remove the autism from a person. Autism is a way of being, it’s how one’s brain is “wired” neurologically. And although there are no cures, there are many non-toxic therapies: behaviourally-based, speech therapy, physical & occupational therapies, & some medicines that treat specific symptoms such as anxiety, that can help a person with autism reach their full potential. At the heart of it all is, I believe, how we as a society value people. If a person does not achieve the goals our society holds dear- go to college, get married, have a family, or is deemed not to have the potential to achieve these goals, then they are written-off as useless. The parallels of the autism advocacy movement to the disabilty-rights & gay-rights movements are striking & much discussed in the online community that I am part of.

Along with the therapies that help our son Brendan, it is the supportive “village”, including this church community, that has been vital to our family’s so far successful coping with autsim. There are those here today who remember when Charlie & I first stood up in Joys & Concerns & shared that Brendan, then 5 years old, had been undergoing testing which revealed that he had severe developmental delays. About a year later we stood before this community again to say that Brendan had been diagnosed with Aspergers Syndrome, an autism spectrum disorder. A few months after Brendan’s diagnosis Charlie & I hosted a “home service” with close friends from church, where we shared our fears & hopes for Brendan’s future & found support for the journey ahead. The Hymn of Reflection that we sang today was the one we chose for this home service, because it states our hopes for Brendan so elegantly. In the 4 years since Brendan was diagnosed with Aspergers he has collected more diagnoses- Obsessive Compulsive Disorder & Tourettes Syndrome, each of them part of his particular autism spectrum characteristics that have unfolded as he has grown older, each one a new challenge to understand & accept. The acceptance does not just appear like magic, but does come in time. Acceptance is essential if we are to remain respectful of Brendan & who he is.

Part two will be posted tomorrow...

3 Comments:

At 2:52 PM, Blogger mcewen said...

I don't suppose it's appropriate to applaud in a Church?
But probably o.k. in cyberspace. [translation = or should that be hyperspace?]

Clap, clap, clap.

BEst wishes

 
At 9:34 PM, Blogger Kristina Chew said...

Flap, flap, flap!
So much here to absorb......heartfelt and true.

 
At 7:24 PM, Blogger Estee Klar-Wolfond said...

I was going to applaud you too before I read the other commenters. So I guess the claps are getting louder. Maybe the audience will one day roar, BRAVO?

 

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