“It’s very hard for members of the three groups to find common ground. People tend to see autism through the lens of personal experience. An autistic college student who has trouble with organization and social skills is likely to view autism very differently from a parent whose child is non verbal, cognitively disabled, and self injurious. ”
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.
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.
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.
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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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.
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.
I originally posted this over two years ago, and like my last post thought it would be worthwhile to reprint it as many parents are preparing for IEPs.
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“Men must attend IEP meetings.”
Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that “men must attend meetings.” [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.
His list of 16 basic principles of advocacy is well worth reading, printing out, and keeping in IEP file to help you prepare each time you must go through the process.
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I’ve also written about my own experiences as an autism dad with IEPs, and as a dad in general. I’ve been lucky, but I know this isn’t always the case. What have your experiences been?
I’ve posted this a couple of times before, but it seems worthwhile to post again as many of us enter IEP season. (originally posted last August)
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As a young Army officer, I read Sun Tzu’s Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu’s demonstration of leadership ability using the Emperor’s concubines as soldiers.)
The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:
Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.
Of course, this may need some translation* into more relevant wording. Such as:
Know the district administration and their stated (and unstated) goals and resources, and know your rights and what is best for your child; in a hundred IEP meetings you will never fail to get what you need.When you are ignorant of what the district’s goals or resources are, but know your rights and your child’s needs, your chances of getting what you need in the IEP are 50/50.
If you are ignorant of both the district’s goals/resources and your rights and needs of your child, you are certain in every IEP meeting to get what you get, and probably not what you really need.
Of course, this important piece of advice can just as easily be translated into the school district perspective, I’ll leave that exercise to you.
Based on my personal experience, conversations with other parents, and conversations in the blogosphere, my guess is that most people (from both sides) go into IEP meetings knowing themselves, but not their “enemy.” As a result, we often see winners and losers in the outcomes of IEPs, the result of hard fought battles that leave everyone bitter and exhausted.
What would happen if both sides heeded this advice and came in knowing themselves and the “enemy”? According to Sun Tzu, both should expect to win. But both sides can’t “win”, can they?
To that I answer a resounding, “Yes, of course both sides can win.” Wouldn’t that be a nice change?
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In a recent post suggesting the formation of an Alliance for Autism, Mike Stanton raised a few issues on which parents and adults with autism as a group may need to come to some sort of agreement. One of those issues are the questions: Is autism a disability or a difference? Can it be both?
More than just an academic debate, the answers to these questions have very definite real world consequences. Disabilities are covered by various laws, policies, etc. etc.. Differences, on the other hand, are not. This was brought home to me when I read the aspie:talk post an adult trying to get accomodations. Although his her issues were more related to not having an official diagnosis, the situation presents a good point of comparison.
If treated as a disability, supported by the proper diagnosis, then the company needs to provide appropriate accommodations to allow the employee to work. If, however, autism is seen as a difference, then the company is under no obligation to provide this employee any unique accommodation.
In a comment to the post, Al had this to say:
i would lay out what accommodations you need in the workplace without referring to the medical issue… which is unsolvable at this point. just state what you need item by item as matters of personal preference, in terms of “developing a comfortable working environment” and “ways they can help you be happier and more productive.” many of the social problems you have are probably going to exist at any workplace, i would guess, i’m not sure to what extent a diagnosis would alleviate the “micro-social” situation.
Obviously, this is an area where parents and adults with autism may have some differing opinions.
Difference, or disability? What do you think? Me, I’m still trying to figure out what I think.
I am not grieving, despite the concern (?) from CS in a comment on my most recent post. (Nor am I simply in denial as I’m sure some will tell me about my thoughts on autism and raising an autistic child.) I have written about grief and autism before, though, and this seemed like a good time to dust that post off and repost it.
From April 2006, Autism and the 5 Stages of Grief:
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For many families, a diagnosis of autism in a child brings about a profound sense of loss. Since most people don’t actively educate themselves about autism before the diagnosis – let’s face it, no one thinks it can happen to them – most of what they know comes from what they may see, hear, or read in the media. Unfortunately, the vast majority of stories about autism in the media are about the ‘devastation’ of autism, of how kids are ‘lost’ in a strange and terrible world away from society.
As a result, I think that many people who find themselves facing an unexpected diagnosis slip into the 5 stages of grief. The link provides some details on the 5 stages, including some discussion of why some think they are not valid, but here are the 5 stages themselves:
These are the stages, as I understand it, that a person will go through if left on their own, if they don’t receive any support or gain any understanding beyond the feeling of loss. One of my goals with Autism for Parents [ed: an unfortunately now defunct site] is to present an alternative to these ‘default’ stages that treat an autism diagnosis as a devastating loss with a series of steps that parents can take to fully understand their situation and go beyond mere acceptance.
Here are the steps I’ve come up with.
- Denial – unfortunately, unavoidable [ed: at least until everyone accepts that it could happen to them and/or that it is not a bad thing to have happen]
- Confusion – again, unavoidable
- Understanding – the process a parent takes to understand the situation. In this step, will answer the questions that come from the confusion stage.
- Plan – based on understanding gained in previous step, make a plan for your life ahead (something parents do with all kids)
- Act – live life to the fullest, adjusting the plan as your understanding grows.
I’m interested in any feedback to help refine the individual steps, or the overall concept itself. I’ll explore each of the steps in a bit more detail in subsequent posts and will consider all comments/suggestions.
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Another comment, this one from Phil Schwarz, talks about the real need for grief in some situations, but also reminds us of what it is we are really grieving. Phil references Jim Sinclair’s Don’t Mourn For Us, which I discovered, and wrote about, along with Phil’s Cure, Recovery, Prevention of Autism? not long after writing the “5 Stages” post.
To me, the most important stage for parents is Stage 5 – ACT. In this context I don’t mean act in a “big” way, trying to change the world while all but ignoring your child. I mean act in a “small” way, as a parent, doing your best with what you’ve got and raising a happy, confident, and self-assured child that becomes a happy, confident, and self-assured adult.
Or, as Phil so eloquently put it in his comment: It’s what you do beyond the grief that matters.
In this excerpt, Lou is considering what it means to be “Lou”, and how he would be different as an adult if he had been different when he was younger.
If I had not been what I am, what would I have been? I have thought about that at times. If I had found it easy to understand what people were saying, would I have wanted to listen more? Would I have learned to talk more easily? And from that, would I have had more friends, even been popular? I try to imagine myself as a child, a normal child, chattering away with family and teachers and classmates. If I had been that child, instead of myself, would I have learned math so easily? Would the great complicated construction of classical music have been so obvious to me at first hearing? I remember the first time I heard Bach’s Toccata and Fugue in D Minor … the intensity of joy I felt. Would I have been able to do the work I do? And what other work might I have been able to do?
It is harder to imagine a different self now that i am an adult.
This particular scene resonated with me as I have had these same thoughts, from a parent’s point of view, as I’ve watched my son grow from a toddler to a 17-year old. (For examples, see Thoughts on curing autism and Whose decision is it?)
For some similar thoughts from a current day, real person with Asperger’s check out Steve’s post Marching to her own drum.
Next: Do I need to be healed?
My recent posts, and your comments to them, has got me thinking about the following question:
Aside from being a good parent, advocating for our autistic children when they are young, and helping them learn how to advocate for themselves as they get older, what are some things that parents can do advocate for autistics in general?
I know what the basic message is, but what I’m not sure of is how best to get that message out; to friends, family, local media, educators, etc etc.
I’m going to be “off the grid” for the next 10 days, so I won’t respond to anything right away. But I’m looking forward to reading your ideas and suggestions.