What would you have done? What would you do today?

What would you have done if a prenatal test for autism had existed when you were expecting, and your child had tested positive for autism?  More importantly, what would you do today, knowing what you now know about autism and being an autism parent, if you were expecting and learned that your child would be autistic?  A comment to my last post from Jen and an article from Susan Senator last year give some insight into the question from an autism mom’s perspective.

From Jen:

I can’t imagine my world without my children in it, but if prenatal testing had been available for autism at that point I probably would have aborted them, as the thought of autistic triplets would not have been one that I could have wrapped my mind around. (needless to say, I was also completely clueless about autism- I think that my two exposures were Rain Man, and an educational aide friend whose wounds I had to fix every night after her “child” with autism bit her all day). I am so glad that I had my children, and as far as I can tell, they are all very happy to be alive. They contribute to the world in so many ways, and we would all be poorer without them.

From Susan:

I found myself worrying about how many otherwise “lucky” children would now never see the light of day. And what might I — an abortion-rights supporter for so long — have done had there been such a screening for autism, before I knew Nat? Now I shudder to think of it. But given that so much of what you hear in the media involves stories of struggle or horrors like the stabbing at Lincoln-Sudbury Regional High School, rather than any of the positive potential of autistic people, autism mainly be forever tied to tragedy. I fear what many people might do with information from an autism screening, if it existed.

The theme that comes through from both Jen and Susan is that any decision in this situation is based on information and the mother (and father-) -to-be’s understanding of what life with autism really means.  Unfortunately, as I’m finding in Prenatal Testing and Disability Rights, the people most often in the position to provide the needed information and education (Ob/Gyn’s and genetic counselors) are quite often the least inclined, and least qualified, to actually provide that information.

Prenatal testing and disability rights

An underlying theme of The Speed of Dark is disability rights in general, but more specifically autism rights in a world where the genetic cause of autism has been determined and a prenatal “cure” is given to any fetus that is found to be autistic.   Of course, here in the real world we aren’t at that point – yet.   But we’re getting there.

Since reading The Speed of Dark, I’ve picked up Prenatal Testing and Disability Rights to try to get a more detailed understanding of the various opinions and considerations around the question.  I’ve given this some thought before – I posted the following as To hear or not to hear, is that the question? in September 2006 – but it’s a big question deserving a bit more thought.

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In the world of autism the question, “If there were a cure available for you or your child, would you use it?” is pretty much rhetorical, food for thought. As such, discussions are more theoretical than practical. In the world of the deaf and hard of hearing, however, cochlear implants mean answering this question has much more practical implications.

At first thought for most ‘hearing’ people (here we go with labels and descriptors again), a technology that would allow or restore hearing seems to be a no-brainer. I think that most hearing parents of deaf children would jump at the chance to make their kids “not deaf.” (For now, I’m going to ignore the fact that the results of cochlear implants vary person to person.) As those kids get older, though, the question becomes a bit more complicated, as the kids (and then adults) establish their identities in the context of the deaf culture. (For a similar discussion of the impact of age on the decision to apply/impose a cure, see my earlier post Thoughts on curing autism.

There are many similarities in the arguments on both sides, and I think that the debate in the deaf community may offer some insights into the same question for autism. For example, the following description of different perspectives could very easily be applied to the question of curing autism:

The (deaf community’s) perception is that there’s nothing wrong. There’s nothing that needs to be fixed. Our perception is, there is something that needs to be fixed. So from the very foundation, we’re diverging in our perspectives.

A Google search on Cochlear Implant controversy brings back quite a few listings, here are some examples of comments in the debate:

  • The controversy over cochlear implants in children has many sides. For some in the deaf community, CIs are an affront to their culture, which as they view it, is a minority threatened by the hearing majority.
  • The technology seems like a medical miracle to many hearing parents and doctors who see the technology as a cure for deafness. But the cochlear implant has long been the center of a stormy debate. Some deaf advocates worry that the view of deafness as an illness to be cured marginalizes the deaf and stigmatizes those who can’t –or don’t wish to–use an implant.
  • Most doctors schedule the procedure as soon as possible in young children to increase their odds of acquiring oral language skills. But some deaf advocates worry that hearing parents may wind up making a choice their deaf children would not have made for themselves.
  • That view of hearing loss as pathological is at the heart of the cochlear controversy. On the extreme end, some deaf advocates who communicate only via sign language and shun any attempt to learn oral language, view the device as a threat to their unique, sign-language-based culture. But even to those with far more moderate views, the cochlear implant is a symbol of the hearing world’s desire to “fix” deaf people.
  • The conflict concerning cochlear implants is centered around the definition of disability. If deafness is defined as a disability, in the eyes of many, it is something to be altered and repaired. According to the medical view, deafness is a disability. On the other hand, if deafness is a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today’s society, should be readily accepted and supported. This opinion is based on the cultural view of deafness. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.
  • Altering a deaf child with surgery at an early age would only cost money once. In contrast, providing interpreting, note taking, and assistive technology would not only continually cost society money; these practices would also create inconveniences for others because of the language barrier.
  • Those who oppose the use of cochlear implants do so for several reasons. These people challenge the supporters of cochlear implants by asking questions such as, “What is normal?” and “Do the quality and quantity of the benefits outweigh the risks involved?”.
  • Parents, confronting a new diagnosis of deafness, react with a wide spectrum of emotions including denial, guilt, the need to blame someone, and the need to find a miracle. Doctors and parents tend to see the child as missing something and view the deafness as a disability that must be fixed to make the child “normal” or whole again. This attitude can have serious social and emotional implications. A child who is told she is “broken” and needs to be fixed will forever see herself as less of a person because of her deafness.
  • The problem is that 90% of deaf children are born to hearing parents. In many cases, these hearing parents may have never met a deaf adult. It is common for parents to be introduced to a number of audiologists and speech therapists when their child is first diagnosed with a hearing loss but to never be taken to meet a deaf adult so that they may receive the other perspective. They are told that something is wrong with their child. It may never be mentioned that deafness is considered to be a cultural identity for some people and that implants are seen as unnecessary. The parents of the deaf child, wanting only what is best for their child, will want to make sure that the child has the opportunity to succeed. If all they have been told is that the child will need to speak to function and that there is a procedure that can provide this, of course they would want the implant. To the parents, it is seen as the instrument of success.
  • Et cetera.

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Military service

It is that time of year for military recruiters to canvas high school campuses for potential recruits.  I originally posted the following in May 06.  This article applies to those who live in the U.S.

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If your autistic child is in an inclusion setting in high school, attending as a “regular” student, you will eventually encounter military recruiters. As part of No Child Left Behind, public schools are obligated to provide student information to the local recruiters. A recent story in the Oregonian (excerpted below) shows the problems that can occur.

To help prevent this kind of problem, you can take the following steps:

  • Have appropriate documents of diagnosis, treatment, IEPs, etc. for your child
  • If possible, obtain a letter from the school district case manager, pediatrician and others
  • Be proactive, and find out who the local recruiters are, for all services
  • Be even more proactive, find out the chain of command for your local recruiters, all the way up to the first field grade officer (usually a Lieutenant Colonel, Battalion Commander)
  • Send a letter to the local recruiter, with a courtesy copy to the chain of command, stating your child’s situation and that you would appreciate having your child excluded from their recruiting activities
  • If needed, send the documentation you’ve gathered to the local recruiters.

Of course, you may want to ask your son or daughter what they would like to do before acting on the latter two options. They may want to, and be able to, serve in the military and it would be wrong to try to stop them (beyond the efforts many parents already make to keep their “typical” kids out of the military). On a related note, registration for Selective Service registration is still mandatory for all men on their 18th birthday. As far as I know, there are no exceptions.

Excerpt from the Oregonian:

“When Jared first started talking about joining the Army, I thought, ‘Well, that isn’t going to happen,’ ” said Paul Guinther, Jared’s father. “I told my wife not to worry about it. They’re not going to take anybody in the service who’s autistic.”

But they did. Last month, Jared came home with papers showing that he not only had enlisted, but also had signed up for the Army’s most dangerous job: cavalry scout. He is scheduled to leave for basic training Aug. 16.

Officials are now investigating whether recruiters at the U.S. Army Recruiting Station in Southeast Portland improperly concealed Jared’s disability, which should have made him ineligible for service.

Jared didn’t speak until he was almost 4 and could not tolerate the feel of grass on his feet.

Doctors diagnosed him with moderate to severe autism, a developmental disorder that strikes when children are toddlers. It causes problems with social interaction, language and intelligence. No one knows its cause or cure.

School and medical records show that Jared, whose recent verbal IQ tested very low, spent years in special education classes. It was only when he was a high school senior that Brenda pushed for Jared to take regular classes because she wanted him to get a normal rather than a modified diploma.

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More info about the US military services for US parents:

[Go Army!!] [sorry, couldn’t resist]

Rehashing old ideas

Three and a half years and nearly 250 posts.  That’s the life so far of 29 Marbles. And to tell the truth, I’ve run out of new things to write about.  Not that there isn’t always something happening in the world related to autism, but like everything else it all seems to happen in cycles.  Different day/month/year, the same stories and questions in different clothing.   

Nowhere is this more evident than in the referral logs for the site.  Most hits come either from the Autism Hub, or from search results.  Sometimes the search queries are on things I wrote about years ago, sometimes more recent.  But inevitably, the same questions keep coming back around.

I first started writing this blog to help me sort through my own feelings and thoughts on autism.  That goal is accomplished; I have a much better conscious understanding now than I did three and a half years ago. But there are many others out there still forming the questions in their minds and looking for answers.   Among those nearly 250 posts are what I feel are good responses to some of those questions.  

I’m sure I’ll continue to write the occasional “new” post, but for now I’m going to dig into the archives and bring out those that answer the questions I see in my referral logs.   Who knows, I might even have something new to add to those things I haven’t given much thought to in a while.

Autism and the tragedy of the commons

Last summer, I put Cooperation and the tragedy of the commons, from the Anecdote blog,  in my “to blog” pile.  It seemed relevant, but I just couldn’t quite figure out how.  In his post about an Alliance for Autism, Mike Stanton raises the problem of reconciling the individual wishes and desires of parents and adults with autism with the long term goals of autism advocacy, which has helped me better understand the relevance.

The problem Mike raises shows up in many different domains and is known as the tragedy of the commons.  Simply stated, tragedy of the commons is:

a dilemma in which multiple individuals acting independently in their own self-interest can ultimately destroy a shared resource even where it is clear that it is not in anyone’s long term interest for this to happen.

The anecdote post references a story on washingtonpost.com discussing the Democratic primary race between Barack Obama and Hillary Clinton and the results of a study done by social psychologist W. Keith Campbell.  From the study:

… because the volunteers did not know whether their kindness would be reciprocated by others or exploited by competitors, people raced to cut as much timber as they could and quickly razed the forests to the ground. Groups with volunteers more willing to think about the collective good preserved their forests longer. But selfish people within these groups had a field day exploiting the altruists — and the forests perished anyway.

Campbell’s experiment is particularly relevant to politics, because he found that groups with a larger number of narcissists — people with an inflated sense of their own importance — tended to raze the forests much faster than groups in which people felt less self-important. Politics, unfortunately, happens to be a domain that self-selects people with an inflated sense of their own importance.

Political scientist Edella Schlager offers the following as a solution:

… the only way to prevent tragedies of the commons is to set up structures in advance that reward long-term thinking and punish short-term selfishness. This happens mostly among competitors who share long-term interests and have social relationships of trust: If you and I are Maine lobstermen, we are likely to agree to set up limits on the overall catch each year because we see our future, and our children’s future, inextricably linked. In the absence of trust and long-term relationships, the only way to prevent these tragedies is to have an outside regulatory agency step in to establish — and enforce — limits.

Sadly, many of the “competitors” in the autism community (communities?) don’t seem to think we share any long term interests, despite the fact that I’m sure we probably do.  Nor are there too many “social relationships of trust”; even here on the Hub there is a general undercurrent of mistrust between adults with autism and non-autistic parents, stemming I think from the lack of shared long term interests mentioned above.

On the other hand, it is easy for the Hub’s “competitors”, as exemplified by the folks at Age of Autism, to avoid the TOTC:  they speak with a single voice (“Vaccines are bad”, “Vaccines caused my kid’s autism”, “Neurodiversity believers are deluded and in denial”) and trust that everyone on “their side” will stay on message.  There are, of course, some more reasonable voices among the bio-med group, but it is the vocal (apparent) majority that makes the most noise.

Mike is on the right track with his proposed Alliance for Autism.  The first step is to figure out what our shared long term interests are, and from there work to build the trusting social relationships that we need to move forward.  Who knows, we might even find that we have some common ground with our “competitors” in what we want for our kids when they become adults.  Wouldn’t that be something.

I’ll kick it off with a couple of my own long term interests and goals:

  • My son receives an education (from me, the schools, his peers) that allows him to participate in the world around him to the extent that he chooses to participate.
  • The general public becomes more aware that adults with autism are adults first, that they have dreams, desires, and interests just like everyone else, and should be allowed and empowered to pursue those dreams, desires, and interests.
  • A legal environment that enforces the above, when necessary, in the workplace and other areas where autism, and other disabilities, are treated with disdain and disrespect.

Is Your Sen. or Rep. Attending Rep. Maloney’s Vaccine-Autism Meeting?

As the folks at Age of Autism have pointed out, Rep. Carolyn Maloney (D-NY) is hosting a special briefing next Wednesday (24 September 2008) for Members of Congress and their Staff to update them on recent developments in the vaccine-autism debate.  I took their advice (kind of) and sent my Senators and Congressman a quick note about the meeting:

Dear …  ,

On Wednesday 24 September, Rep. Carolyn Maloney (D-NY) is hosting a special briefing for Members of Congress and their Staff to update them on recent developments in the vaccine-autism debate.  As the parent of an autistic son, now 17, I’m asking that you not spend the valuable time of you or your staff at this meeting.

As you may have guessed, I don’t subscribe to the belief that vaccines, or anything in them, cause autism. All of the science to date has found no causal link between the two, and my own personal experience does not lead me to think otherwise.  (My other son, age 15, is not autistic.)

I do encourage you and your staff to become involved in the discussion about autism.  I believe that the most effective use of your time and influence would be in the areas of improving availability of services for children with autism, education and support for parents of autistic children, and – perhaps most importantly – improvement of services and support for adults with autism.

Thank you for your consideration of this matter.

Sincerely,

Or in other words:  Don’t waste your time on this, there are other more productive things you could – SHOULD – be doing for children with autism, their parents, and adults with autism.

PLEASE CONTACT YOUR US SENATORS (HERE) AND MEMBERS OF CONGRESS (HERE) AND URGE THEM TO NOT ATTEND OR SEND A STAFF MEMBER TO THIS MEETING ON CAPITOL HILL.

The only way to get the best of an argument…

… is to avoid it.

That is the first of 12 suggestions from Dale Carnegie on how to “win people to your way of thinking“. A couple of the others that I really like are:

  • Show respect for the other person’s opinion. Never say, “You’re wrong”.
  • If you are wrong, admit it quickly and emphatically.
  • Begin in a friendly way.
  • Get the other person saying, “Yes, yes” immediately.
  • Try honestly to see things from the other person’s point of view.
  • Be sympathetic with the other person’s ideas and desires.

In many ways, these remind of what I understand to be the basic attributes of diplomacy and negotiation. Obviously, there may come a point when these efforts fail and other, more drastic, approaches need to be taken.

Some would say that we are already beyond the point that these types of approaches can be of value in ongoing debates surrounding autism and autism advocacy. But I don’t believe that.

What about you?