Genes, Activism, and Why We Still Have the Push Mower
June 4, 2007 by Kristina Chew, PhD
Filed under Disability Rights, Environment, Epidemic, Genetics, Health, Parenting, Politics, Science, Weblogs
Being the mother of an autistic son who writes a weblog about autism enables one to talk about genes, political activism, and lawn mowers all in one post.
Let me explain.
My May 18th post, Infants and Autism and Education on prenatal genetic testing is included in the June 3rd Gene Genie, a blog carnival on genetics, genes, DNA, and the genome over at Eye on DNA.
Infants and Autism and Education at Autism Vox
Kristina Chew looks at diagnosis for autism especially in infants. She would have been interested in prenatal genetic testing for her family so that she’d know what to expect in raising her autistic son Charlie. I suspect, however, that the majority of parents using prenatal genetic diagnosis aren’t doing so to be better prepared to raise a special needs child.
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Other posts of note are:
- ScienceRoll offers 10 Tips on how to search for genetic conditions.
- Greg Laden’s post, PKU: An exploration of a metabolic disease, notes that “PKU is 100% genetic. And it is 100% environmental” and offers an interesting comparison to questions about the role of genetics and the environment as causes of autism.
- A list of the Top 10 ways DNA technology will change your life on HealthNex by guestblogger Hsien-Hsien Lei.
Hsien, who writes Eye on DNA and is a biotech consultant, invited me to write Autism Vox after reading my original weblog about my son Charlie, My Son Has Autism for the b5 media Science and Health channel. (Hsien no longer blogs for b5media; her new blog Eye on DNA is a must-read if you’d like to find out what impact the latest developments and discoveries about genes might have on science, health, and culture.) When Hsien asked me to write for the Science and Health channel my first thought was, I can’t do that, I’m no scientist (as I am not; I am a literary critic and a classics professor), I’m just a mom. I can write about education and autism advocacy, I wrote to Hsien, and she said that would be great.
But a funny thing happened as I wrote more and more on Autism Vox, read about genes and health at Hsien’s former blog, Genetics and Health, and started to follow her links other science blogs: I started to find myself interested, more and more, in writing about science and autism. There is much that I do not understand and have to consult others (Hsien included) about, and I am grateful for readers who are scientists and provide information and discussion to my posts (and corrections when I err—these are especially appreciated!). Prior to writing Autism Vox, I chose to limit my reading about science and autism to nothing more than seemed directly applicable to Charlie’s medical and other needs.
At this point, I also avoided writing too much about what can be called the politics of autism. Let others debate about the MMR and mercury and whether or not there is an autism epidemic; it seemed best to use phrases such as “genetic predisposition” and “environmental trigger” whenever I had to offer an opinion about the causes of autism. It seemed best, perhaps because less taxing on my thoughts, to leave the autism activism to others.
But like I said, a funny thing happened as I wrote more and more on Autism Vox. Writing more about science—knowing more about the science of autism—led me to see how science is intertwined in the politics of autism, be they about the environment or about new studies on genes for autism. And as a parent, it is crucial to know about the science of autism, even if only to understand why, when it comes to “science” and autism, one has to be wary of junk science and of so-called experts in areas in which they are not. And trying to foster understanding in other parents of autistic children and in “the general public” about science and education and how politics can influence both of these, is something I try to do here.
I’ve been grateful—-I have been downright fortunate—to have been a part of a committed and knowledgeable blog community, about science and medicine and health, and about autism thanks to the Autism Hub. In the past few days there has been some dispute and debate on the Autism Hub about the role of non-autistic bloggers about autism, in which category I include myself. Autism advocacy should be led by autistics (as I’m in agreement with); what, then, is the specific role of a parent’s perspective? One blogger, Larry Arnold, has resigned from the community of the Autism Hub: Who speaks for autism? And there are also the many parents I know who blog to seek support and share stories of life raising an autistic child; who, as sister autism mom-blogger Mom-NOS puts it, prefer to mow their own lawn.
For myself, I enjoy the debates because I learn from them. I try, to what extent I can, to combine “autism mom-blogging” with “autism activism” which, to me, also means keeping myself informed about all things autism, from science to IDEA to autism lit. For me, mothering an autistic child means I’m “activism-ing for autism” when Charlie and I are in the checkout line at the grocery store and the customer behind us looks at their watch and sighs because, due to my asking Charlie to put the items in the shopping basket onto the conveyor belt, this process is taking a rather long time. (Today, for instance, Charlie was so engrossed in poking a watermelon through the saran and examining a jar of relish that I had to repeat my requests a few times.) I am ever grateful for the blogging communities I am part of, because there is another community out there, in the grocery stores and on the streets and in every public place, who has never heard of neurodiversity, equates autism with mental retardation, and averts their eyes in the face of a not a very verbal half-Asian 10-year-old.
To refer to a comment I left on Mom-NOS’s blog regarding the mowing: There is a push-mower in the backyard shed that one day we’ll teach Charlie to use to mow the lawn. I know that one day Charlie will be more than able to mow his own lawn, to represent himself. And it’s Jim’s and my work to teach him how to position the mower on the grass, to seek other ways besides large doses of chemicals to fertilize the lawn, and to let him know when a tree root or rock is on the horizon.
Jeff Stimpson
Jill Cornfield
“I know that one day Charlie will be more than able to mow his own lawn” Literally and figuratively it is full of strength.
This struck a chord with me. I stood in the mirror after I read it and said out loud “I know that one day Patrick will be more than able to mow his own lawn” and it felt wonderful. Thank you.
I read most of what went on there over the weekend and would not call it a debate. I would call it sad.
They should put up a sign that reads, “Danger, pseudo intellectuals at work – enter at your own risk”.
I enjoy and support the work of you, Kevin and many of the other “bloggers” on the hub. I hope it continues and I hope that someday the word diversity will be understood as the powerful state it can be.
This all reinforces for me why I am grateful for internet—-because of the connections and of the community it makes possible, and the ability for all of us to put out our platforms, and see what sensus communis results.
I owe the metaphor to Mom-NOS—-and Bud, of course.
Kristina, thanks for your impeccably timed commentary. I have been struggling this past weekend with being able to envision Nik’s future as including his ability to “mow his own lawn” so to speak. I find strength and comfort in your statements about Charlie, and tremendous wisdom in your words about activism and knowledge. This is the gift I needed to receive this morning. Thanks.
Kristina, It’s amazing, isn’t it? How far we’ve come together. I have learned so much from you in so many different ways. Hooray for the Internet and blogging for bringing us together.
Could never have done it without all of you, friends new and old!
Kristina,
I was sad when you stopped posting at Autismland because I found such power in the ways you chose to describe your life with Charlie. And now, here at Autism Vox, I am captured by how you have managed to weave an even richer tapestry. I didn’t think it was possible. I don’t often leave comments, but I always read and I always learn something new.
Ok Mr nasty posts on your blog again.
This is one last thing I have to say,(I hope it is the last I really don’t have the energy for it)
And I think it is something for everyone to realise, that for all this has been a war of words in cyberspace, perhaps all of us forget that the others have off line lives too, yes I do, and so does Kev, I still don’t see why he has taken this so badly.
That is as may be, I may not have an autistic child to care for, but I do have myself to care for, same goes for Joel, same goes for Amanda.
I think it has been forgotten on all sides that what we see on line is but a vignette of more complex lives and connections, and it is all too easy only to see one side of a person, this is not a soap opera and certainly not the big brother house, though one could be forgiven for doubting that lately.
I hold to my view about where leadership should come from, I have what I believe to be sound historical reasons for doing so based on experience beyond autism advocacy. It seems the hub was not a good place to raise that issue, and it seems it was never a particularly appropriate place for me to be.
That belief of mine tells you no more about what I am like, than to tell you what party I vote for in an election, or if I vote tells you what I am like.
I could as well be metaphorically hanged in this were it a religious forum and I stated that I don’t believe in women priests. (this is an example not my actual religious position) Or in another forum for taking sides on a contentious leadership issue in local politics.
I am perhaps more used to a rugged style of interaction where ideas and personalities should not be confused.
Nowhere in this leadership debate, if that is what it is, can it be assumed that I have contempt for parents of autistic children or that I have no connection with them offline, of course it has be been said of me by the curebies that I have contempt for parents, but that is also probably said of any parent that won’t chelate there child for that matter.
No where can it be assumed it is part of the core of my belief that advocacy for all autistics, is not supporting parents, because it is a belief in proper services and education, and also in the dissemination of factual information that leads to informed decision. The science is not my thing however, but the politics is.
Where does any of what I have said make me a bad person, who is going to turn child against parent.
Everyone is as guilty as me at some time of having been inopportune in there choice of words, and I can’t really differentiate between the way in which it seems OK to talk to the mercurians and curebies, in one particular way and to each other in another, we are all human at the end of it.
People of a like persuasion tend to congregate together in groups where the atmosphere is generally self supporting, the “opposition” does that too, but they have there fall outs as well. It would be a big shock if they didn’t
I feel simply that I was the wrong person in the wrong place in this hub, that is all, it was bound to end in disagreement, but nobody saw it coming.
I think the solution is to stop the bickering and simply for the two sides to walk away from it, any more words from me will inflame rather than soothe.
I have had enough of this blog world as much as any other agrieved participant in what was never intended to be a row.
Fortunately I have plenty of off line work to do where people seem to be a bit more appreciative and might I say realistic in there expectations and estimation of me.
It was parents who nominated and elected me to the Council of the NAS and it is parents who keep me there as we are still way in the minority when it comes to having any influence on the vote. Do you think I would be serving a second term if they thought I had done a disservice to them and the NAS never mind I have been as forthright and maybe confusing in real life public meetings as I have been on line ?
I think Mike (who has difficulties of his own off line to deal with at the moment) would tell you how people who were once tooth and nail against me, throwing all the same accusations as you will read from the last few days, over time realised I was not against them and indeed had a side to me that has shown in the NAS that autistics are not incapable of the kind of decision making that is necessary at senior level in a multi million pound organisation, where decision has an impact on the lives of many more people than a few harsh rebukes in a blog commentary.
If I were an egoist, I would want to be the only “gay in the village” to make reference to the UK TV commedy “little Britain” (dunno if it shows in the US)
In fact I have ardently been pursuing the line that the NAS needs to become a more friendly place to encourage others to follow and eventually replace me. I think that is beginning to bear fruit but really it is a tough place to be and often intimidating to autistics. That’s not what parents want surely? to do nothing to change the fabric of organisations and institutions where because the majority is not autistic, things are thoughtlessly done in ways that effectively exclude autistic input, unless one is prepared to put up with a lot of discomfort.
My argument with you personally is an intellectual one, I missed not being able to pursue it with you in Liverpool. You strike me as a person who is well worth debating with.
I missed most of the nasty debate. I was busy getting engaged this weekend and didn’t spend much time online (I asked and she said yes!)
But as an autistic adult and a parent of an autistic child, you have to have both sides involved and working together. Those of us who are grown know what the kids are going through and can sometimes give the parents advice and information that their doctors can’t. But many people still think that someone autistic is unable to think for themself, so the parents need to be there to talk with those people.
Point is, being autistic and being a parent of an autistic child are two different things, with different experiences and view points. Those of us in both camps understand both sides, and somehow we have to work together as equals.
Joe, congratulations!
Larry, I’ve appreciated how you’ve spurred me to think. And I much regret not having been able to be in Liverpool to talk about that paper I wrote on autism and poetry; I’ve already been rethinking some of the ideas—-all is ever in flux.
I have stayed out of “activism” and am largely a lurker, because let’s face it, I’m too darn tired after speech, OT, IEP, ABA, Floortime, and EIEIO for anything except surfing the net and maybe paying bills. Plus, I’m a natural cynic/skeptic and have to study LOTS before I choose a side or parts of sides to agree with publicly.
But, I have to be enough of an “educated activist autism mom” to advocate locally for Bobby until he’s old enough and communicative enough (in whatever method) to be a force for himself. I have no doubt that he’ll be capable, but I do doubt whether he’ll be always given the opportunity to self-advocate, given how our world currently works (he who’s fastest, cutest, glibest and loudest wins…) If tackling people at their knees could be considered self-advocacy, he’d be there already, but 3 year olds are rarely allowed into their IEP meetings
I do love reading various autism blogs from all side of the debate, and especially want to hear more from adults with autism (like Amanda Baggs) so I can try and get a glimpse into Bobby’s mind. I know people with autism aren’t all alike (that’s blindingly obvious), but I’m going for whatever insights I can get. It’s also great to read posts from other parents with kids on the spectrum, because the more ideas I can get, the better I can be effective and understanding for my boy.
I guess I see this as a “sharing is better” experience. My kid’s complete experience isn’t going to be the same as Charlie’s (thanks for sharing, BTW!), but we all have bits of life in common.
Just my 2.5 cents worth…
I am banned from autism hub. They say I am too angry even tho I dont advocate violance.
Only NTs can be angry. When we are angry we are misbehaving. just ask kevin