Autism and the 5 stages of grief

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:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

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 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
• 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.

tagged as: Autism

Autism and God

I’ve written briefly about autism and religion in No wheelchairs in heaven? What about autism? Recently, I’ve been giving a bit more thought to the subject. The discussion that follows is primarily from a Christian perspective, mainly because that’s the one I’m most familiar with, but I believe the basic concepts transcend any particular faith or denomination.

One of the many things that all parents must think about is what – and how – to teach their kids about religious and spiritual matters and how important religious practice will be to the family in day-to-day life. This is no less an important matter for parents with autistic children, though the approach and expectations of parents may need to be adjusted to suit the needs of the child.

Many blogs by parents of autistic children discuss the importance of religious faith in their lives and how it helps their family find needed strength and understanding. Some of these also discuss questions of accomodation and acceptance within their church, with varying degrees of success. It is along these lines that the story of Matthew, a 10-year old autistic boy in Phoenix whose family is in a dispute with the Catholic Church over accomodations for Communion, has been told in various news stories.

A quick summary of the situation:

The Catholic Church has told the parents of a 10-year-old autistic boy that, because the child cannot consume the host, he is not receiving Communion properly. Until he does, church officials say, he cannot partake of the church's most meaningful sacrament.

According to a letter from Bishop Thomas J. Olmsted, delivered to the Lake Havasu City family on Feb. 12, the boy cannot accept Communion in the Catholic Church until he can "actually receive the Eucharist, actually take and eat."

Beyond the practices of specific denominations, or individual congregations, this situation raises the even more important question to parents: “What does God (in this case, the Catholic version) think about this boy who is unable to physically accept the Eucharist?” There are several articles and blogs that address this question from a theological standpoint, so I’m not going to go into any detail here (see the list of various news stories linked to above.) But it is a question that believers of all faiths and denominations must grapple with.

In Matthew’s story, the boy’s father has the following to say:

"I took my son to CCD (religious education) classes for two years to prepare him," said Moran, a stay-at-home father. "He deserves it."

Moran also said his son realizes that he is doing something special. When he was not allowed to go to Communion on Feb. 26, "it was terrible," said Matthew's mother. "Matt screamed and cried because he did not get his Communion."

This intrigued me on many levels. First, these are assumptions by the father on why his son was upset about being denied communion. The father assumed it was because his son was upset that his ability to accept the Eucharist would affect his relationship with God. Perhaps, though, Matthew’s reaction was based not on the content of the situation but the context: his well established routine had been violated. And we all know that (warning: gross generalization ahead) autistics don’t like their routines messed with.

Can autistic kids, in general, have true religious beliefs, true faith? Do they understand the meaning of, for instance, the death and resurrection of Jesus? Just because they can learn and participate in the rituals, does that mean they get the abstract meaning, the reading between the lines? (To be honest, this is a question I wonder about with NT kids as well.)

As parents, I think we all have an idea of what God thinks about our autistic children. I guess the question I’m asking is: What do our autistic children think about God?

tagged as: Autism, Asperger's Syndrome, Religion, God, Roman Catholic Church

More thoughts on autism inspired by the X-men film trilogy

In my last post, I put down some very hasty thoughts about the upcoming film X-Men III and how its theme mirrors somewhat the question of ‘curing’ autism. The other films in the series, especially X-Men 2, offer some interesting insight as well.

For those of you not familiar with the film series, here is a short summary of the major themes:

• X-Men: As the number of mutants in the population rapidly increases, there is fear in the human segment of the population of these mutants and their various differences and special abilities. The government (in this case, U.S.) is exploring various legislation to monitor and control these mutants. One especially powerful mutant (Magneto), who as a child was a holocaust survivor, decides to take the fight to the leaders of the world with a plan to turn them all into mutants themselves, so they would ‘understand.’ A group of ‘good-guy’ mutants – the X-Men – is determined to find a way for mutants and humans to live together peacefully. Despite society’s fear/hatred of them, the X-Men take on the task of preventing Magneto’s plan from succeeding.


• X2 X-Men United: Fear, caused in large part by a lack of understanding of ‘mutantism,’ is resulting in more human desire to track and control mutants and their activities. One somewhat rogue military officer, who has a mutant son he unsuccessfully tried to ‘cure,’ takes it as his personal mission to wipe-out (as in kill) all mutants. The good guys (the X-men) and the bad guys (Magneto, et al) must come together to avert this attempted genocide. Along the way, the bad guys try to turn the tables and wipe out all non-mutants, with the good guys now having to intervene again on behalf of those that would destroy them. Though full of action, this movie also addresses the social aspects of ‘awareness’ and ‘acceptance’ of those that are different.


• X-Men 3: Not yet released, the trailer for the film hints at the looming war. This summary comes from IMDB: In X-Men: The Last Stand, the final chapter in the X-Men motion picture trilogy, a "cure" for mutancy threatens to alter the course of history. For the first time, mutants have a choice: retain their uniqueness, though it isolates and alienates them, or give up their powers and become human. The opposing viewpoints of mutant leaders Charles Xavier (Stewart), who preaches tolerance, and Magneto (McKellen), who believes in the survival of the fittest, are put to the ultimate test -- triggering the war to end all wars.

There are two scenes in particular from X-Men 2 that stand out in my mind. The first is a discussion between a teen-age boy and his mother when she first discovers he is a mutant, the second is a conversation between two mutants from different sides of the good-bad divide.

One misconception about the mutants in the X-Men world and their abilities is that they are all ‘super-heroes.’ While it is true that some of the powers require a conscious effort to invoke (like the ability to control the weather or transfigure into anyone else), many of the abilities are always “on,” uncontrollable by the individual with the mutant ability (such as the eyes that shoot out a destructive beam of light unless covered by special goggles or the girl whose touch to your bare skin will slowly drain your life force). And some have a combination of the two, typically expressed as a controllable power and an uncontrollable physical appearance.

The conversation between mother and son occurs when the boy comes home unexpectedly from the boarding school he attends. The school happens to be a covert school for kids with mutant abilities; the mother thinks it is a prep-school for gifted (in the conventional sense) children. When the boy tells his mother the truth, and demonstrates his mutant ability (btw, he looks like a regular human), his mother’s reaction is to ask, “Have you ever tried to not be a mutant?” The underlying message, to me, was “You look normal, can’t you just act normal?”

The conversation between mutants comes when the good guys and bad guys are temporarily allied in their struggle to survive. One of the mutants, Nightcrawler, has the ability to transport himself (think Star Trek) at will. He is physically distinguished by his dark blue skin and demonic tail. The other, Mystique, has the ability to mimic others physically. Her natural appearance is scaly blue skin. Here’s a paraphrasing of their conversation:

N: I’ve heard you can imitate anyone, even their voice.
M: (using N’s voice) Even their voice.
N: Then why don’t you pretend to be like them all the time?
M: Because we shouldn’t have to.

Like the world of autism some appear to be normal but don't act it and some are physically different as well. Why can't they all just "act normal", regardless of their appearance, and especially when they appear normal?

Because they shouldn’t have to.

tagged as: Autism, Asperger's Syndrome, X-Men

Autism and The X-Men

I was kind of paying attention to the TV this weekend when the trailer for X-Men III: The Last Stand came on. I really started paying attention when the character of Storm said:

There's nothing to cure! This is who we are.

If you're not familiar with the X-Men series of movies - or the Marvel comic books on which the films are based - the basic story is of a group of 'mutants' and their struggle to gain acceptance by non-mutants, aka humans.

The basic premise of this third of three movies is that the government (humans) have found a "cure" for mutant-ism and is trying to force mutants to be 'cured.' As you can probably tell from the quote above, the mutants don't want to - DON'T THINK THEY NEED TO BE - cured.

(Sound familiar yet?)

tagged as: Autism, X-Men

Thoughts on "awareness" for Autism Awareness Month

Awareness means different things to different people. As National Autism Awareness Month gets underway (I know, I'm a couple of days late), I've been trying to find out what exactly we are supposed to be raising awareness of. More specifically, I'm curious what the proclamation that created NAAM says is the purpose of raising awareness. Unfortunately, a Google search didn't help me much (though I didn't look to hard, I must admit). If anyone can point me to the official proclamation, I'd appreciate it.

In the meantime, I'd like to share some thoughts on awareness from Cal Montgomery. These are excerpts from a review she wrote of the DVD Autism is a World.

"Awareness" is a word that I heard frequently in conversations about Autism Is a World before anyone I knew had had a chance to see it. Awareness, of course, is a standard goal of almost every book, article, lecture, and documentary about disability: the intended audience is obviously nondisabled, is obviously curious about disability, and cannot be insulted by the suggestion that maybe they're a bit voyeuristic. Nope, they just want to be aware, to understand, to become educated about the sort of people we are. Not the sort of things that are done to us, but the sort of people we are.
...
I tend not to cooperate in awareness efforts. I am tired of being what Jim Sinclair calls "a self-narrating zoo exhibit," tired of being told by the neurotypical parents and teachers and professionals who deal with autistic people that my only value is as a sort of reference work they can use to help ensure that a couple of generations from now there is nobody like me on the planet.
...
But awareness is not necessarily a bad goal. When it's done well it is a good way for people who know certain things to communicate them to people who, so far, don't know those things.

If awareness was a goal of the filmmakers (and I believe that it was), they have succeeded. W.M "weeza002", for example, writes in an Amazon review that "My future stepson is 23 and autistic, and has always been treated as a [4-year-old], but this show makes me question just how much is going on below the surface. I may just be an optimistic future stepmom, but the thought that there is potentially an intelligent man trapped in that body both scares and gives me hope," directly echoing Sue Rubin's contention that "nonverbal autistic people are intelligent" and demonstrating how that belief is relevant to her own life.

But at the same time that Autism Is a World is a step forward for Rubin, who does not agree with a very great deal that has been said about her, it's also an attempt to say something about me with which I do not agree. Rubin's experience of autism and her beliefs about what it is and what should be done about it are not even close to my own, and when she claims that this is what autism is rather than this is what my experience of autism is, I think she's crossed a line that is well-trodden but, I think, still worth defending.

The rest of the review is also well worth reading.

What struck me while reading her review was her dislike at being the target of stereo-typing. Saying that "all autistics do ..." is about as meaningless as saying "all black men can ..." or "women can't do...." Perhaps what we should be raising awareness of is not the fact that there are so many autistics, but focusing on the nature of autism and how autistics, like everyone else, have a place in the world.

tagged as: Autism, Asperger's Syndrome, National Autism Awareness Month, Stereotypes