Monthly Archives: May 2006

To hear, or not to hear – Is that the question?

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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Real concerns from “Autism Every Day”

While I didn’t care much for the Autism Speaks produced video Autism Every Day and its representation of only the negative aspect of raising autistic children, many of the concerns raised by the mothers in the video (who were unfortunately depicted as selfish and whiny) are valid. The two that really come to mind are elopement and fear for the future.

A common every day fear is that your autistic child will run or wander off, with potentially harmful and sometimes fatal results. This was in the news late last week, when a 5 year old autistic boy was found drowned in a retention pond. What made this particular story even worse for those involved was that the boy was in care of relatives (an aunt). But this problem is not confined to autistic children: the same township in the story above recently experienced the death of a two year old in a retention pond as well.

Since most people don’t live near bodies of water (though swimming pools are becoming more and more common), the refrain “I’m afraid he’s just going to run out in traffic one day and be killed” is one that most parents of autistics can relate to. Again, this is a fear not confined to autistic children, but is also a concern for parents of young children.

I have written a little bit about how you can help prepare your community, especially law enforcement, prepare for dealing with these types of situations at Autism for Parents, though there is a lot more that needs to be said. To be honest, though, I’m not sure what parents can do to stop this from happening (beyond a complete lockdown of their kids). Any thoughts?

Another common anxiety for parents of autistic children is, “I can’t ever die, what would happen to my child?” While none of us look forward to the day that we are no longer around to help our children in person, there are many things that parents can do to ensure their children are taken care of in the future. One of my goals in setting up Autism for Parents was to help address this types of issues, and I recently posted some thoughts specifically addressing this question.

There is a lot of debate about whether or not autism should be cured or if it is a valid state of being. No matter your opinion on that, though, I think it is important for all parents of autistic children to not just identify the challenges/differences of raising and autistic child, but to take the appropriate action to help that child succeed in life.

So what?

Ack!
Thbbbt!

That pretty much sums up my feelings over the past couple of weeks about autism news. I have the feeling this post is going to go long and wide, so consider yourself forewarned….

At last week’s Senate confirmation hearings for President Bush’s nominee for head of the CIA, GEN Michael Hayden was asked to comment on the value of ‘targeted intelligence,’ the process of gathering intelligence explicity supports a desired outcome. (If I remember correctly, it was asked by a Democratic Senator doing a bit of sneaky Bush-bashing.) GEN Hayden replied along the following lines – this is a paraphrase, I could not find an actual transcript:

I’ve got two great kids, teenagers. But if I wanted, I could put together a dossier on them that contained all the bad things they’ve ever done. This would be accurate, but would not tell the whole story. You would think these were the most rotten, evil kids on the planet. If all you are looking for, or expecting to see, is one aspect of a situation, then that is what you will get.

This exchange from the hearings kept popping into my mind as I read the many descriptions of the Autism Speaks video, Autism Every Day. I finally got around to watching that video today. Ack!! Thbbbt!!

This video is nothing if not targeted intelligence, the Autism Speaks equivalent of the 2003 State of the Union address and Secretary Powell’s briefing to the UN on Iraq’s weapons of mass destruction program. What is their goal? Well…, war of course. War on autism. But is this also a war on autistics? It’s kind of hard to tell the difference.

About half way through the video, which to that point basically consists of a bunch autism parents – I should say autism MOTHERS – whining about how hard life is with autistic kids, I couldn’t help think, “So what? Parenting is hard.” In fact, I was going to write a bit about that, but Kev beat me to it:

No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids…..so what?

Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are far from the whole story.

Deja vu, anyone? (See the quote from GEN Hayden above.)

I was flabbergasted (to say the least) when one of the mothers in the video said that, except for the fact that she also had a non-autistic daughter, she would would have driven off the George Washington Bridge so her autistic daughter “wouldn’t have to go to that school.” Thbbbt!!! With the autistic daughter (8 or 9 years old) in the room with her. Ack! And then the non-autistic daughter said, “I wish I had a non-autistic sister.” …!!!… (words escape me here) Not I wish my sister weren’t autistic, but I wish I had a different sister.

This of course leads into the story of the death of a 3 year old autistic girl at the hands of her mother. Much of the press, and most of the comments from the family and friends, seems to be along the lines of, “Poor woman, she was the mother of an autistic child and she just snapped. Please pray for her. It wasn’t her fault.”

Much of the whining (sorry, that’s how it came across to this 13 year veteran of autism parenting) in the video was focused on how the autism negatively impacted the lives of the parents. “Sorry, I’d love to go get bagels with you, but I’ve got to go deal with my autistic child.” “I couldn’t keep the job I wanted.” “This wasn’t my choice. I’m not a therapist, I got drafted. I’m a parent of an autistic child.”

Let me tell you a story.

A couple of days ago some friends watched their 6-year old son die, heard his last breath as he succumbed to terminal illness. About 3 weeks ago, their son’s body began rejecting food from the tube. Nearly 6 months before that, he became unable to eat food (hence, the tube). For the past two years, he has been unable to move. An unbelievable amount of love and caring. Did they miss the things they could not do? Undoubtedly. Did it make their life hard? Yep. Did they whine about how miserable they were because of their sick child? Not a chance. Did they consider throwing him off a bridge? Puh-lease!

Life is hard. Parenting is hard. So what?

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Will the “real” Steven please come out?

The whole article, Autism: The search for Steven, is only available by subscription to New Scientist (which I don’t have), but the article preview, the first paragraph actually, gives an idea of the tone the article likely takes:

Will it ever be possible to “bring out” the real person in an autistic child? Perhaps not, but Vilayanur Ramachandran and Lindsay Oberman think they have compelling evidence to explain autism’s bizarre symptoms.

More disturbing to me is the quote from one of the physician’s patients (actually the patient’s mother):

I KNOW Steven is trapped in there somewhere. If only you could find a way to tell our son how dearly we love him, perhaps you could bring him out, Dr Ramachandran.

I wish I could reach out to that mother and tell her that her son is right there in front of her, that every day she lets go by without getting to know her son is a day she will regret later.

If anyone reading this has a subscription or has read the entire article, I’d love to ear your thoughts.

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Who decides what’s autistic, anyway?

Recent stories about potential bias on the part of the contributors to the DSM-IV got me thinking about the DSM, how it is developed, and who develops it. If you aren’t yet aware, it is the DSM IV that contains the diagnostic criteria for the Pervasive Development Disorders (PDD), including autism.

The DSM is published by the American Psychiatric Association and dates back to 1952. The next revision is expected to be published in 2011, with working groups to be formed in the not too distant future to start working on it.

With all the attention, discussion, controversy, and activism devoted to autism over the past several years (and which I expect will continue to grow over the next several years), I wonder what the new DSM-V will have to say about autism. Will it break ASD down into different sub-types? Will it take into account physical as well as neurological questions? Will it basically stay the same?

If you could provide input to the DSM-V authors on the topic of autism, what would it be?

As excerpted on wikipedia, here is the DSM definition (section 299.00) for autism:

  1. A total of six (or more) items from (1), (2) and (3), with at least two from (1), and one each from (2) and (3):
    1. qualitative impairment in social interaction, as manifested by at least two of the following:
      1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
      2. failure to develop peer relationships appropriate to developmental level
      3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
      4. lack of social or emotional reciprocity

    2. qualitative impairments in communication as manifested by at least one of the following:
      1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
      2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
      3. stereotyped and repetitive use of language or idiosyncratic language
      4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

    3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
      1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      2. apparently inflexible adherence to specific, nonfunctional routines or rituals
      3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
      4. persistent preoccupation with parts of objects

  2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
  3. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

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Time Magazine: New Insights into the Hidden World of Autism

On news stands tomorrow (8 May), Time Magazine‘s cover story (set of stories, really) looks at autism in some detail. Here is an excerpt from the main story, “Inside the Autistic Mind“:

MORE THAN 60 YEARS AFTER AUTISM WAS first described by American psychiatrist Leo Kanner, there are still more questions than answers about this complex disorder…. But slowly, steadily, many myths about autism are falling away, as scientists get a better picture of what’s going on in the bodies and brains of people with autism and as more of those who are profoundly affected are able to give voice to their experience. Among the surprises:

  • Autism is almost certainly, like cancer, many diseases with many distinct causes. It’s well known that there’s a wide range in the severity of symptoms–from profound disability to milder forms like Asperger syndrome, in which intellectual ability is generally high but social awareness is low. Indeed, doctors now prefer the term Autistic Spectrum Disorders (ASD). But scientists suspect there are also distinct subtypes, including an early-onset type and a regressive type that can strike as late as age 2.
  • Once thought to be mainly a disease of the cerebellum–a region in the back of the brain that integrates sensory and motor activity, autism is increasingly seen as a pervasive problem with the way the brain is wired. The distribution of white matter, the nerve fibers that link diverse parts of the brain, is abnormal, but it’s not clear how much is the cause and how much the result of autism.
  • The immune system may play a critical role in the development of at least some types of autism. This suggests some new avenues of prevention and treatment.
  • Many classic symptoms of autism–spinning, head banging, endlessly repeating phrases–appear to be coping mechanisms rather than hard-wired behaviors. Other classic symptoms–a lack of emotion, an inability to love–can now be largely dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.
  • The world of autism therapy continues to be bombarded by cure-of-the-day fads. But therapists are beginning to sort out the best ways to intervene. And while autism is generally a lifelong struggle, there are some reported cases in which kids who were identified as autistic and treated at an early age no longer exhibit symptoms.

On the topic of mercury/thimerosol:

At the Center for Children’s Environmental Health and Disease Prevention at the University of California at Davis, toxicologist Isaac Pessah is studying hair, blood, urine and tissue samples from 700 families with autism. He’s testing for 17 metals, traces of pesticides, opioids and other toxicants. In March Pessah caused a stir by releasing a study that showed that even the low level of mercury used in vaccines preserved with thimerosal, long a suspect in autism, can trigger irregularities in the immune-system cells–at least in the test tube. But he does not regard thimerosal (which has been removed from routine childhood vaccines) as anything like a smoking gun. “There’s probably no one trigger that’s causing autism from the environmental side,” says Pessah, “and there’s no one gene that’s causing it.”

Other stories in the set include:

The tale of two schools, the Alpine Learning Group in Paramus, NJ and Celebrate the Children in Stanhope, NJ, that apply two of the most common approaches to working with kids with autistic spectrum disorders, ABA and Floortime, respectively.

The Most Difficult Decision of My Life: A first-person column by TIME’s Amy Lennard Goehner on her son’s experience at a very unusual boarding school for autistic kids, called Boston Higashi.

I haven’t had a chance to read all of it completely, but it looks like a lot of good information. It also looks like a lot of good controversy for discussion.

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