14 April 2006

Avoiding unfortunate situations: Autism and law enforcement

Charles Fox, on his Special Education Law Blog, has a link to and discussion of the report Avoiding Unfortunate Situations. From the report's introduction:

Law enforcement agencies in the 21st Century are embracing community policing and better education for their increasingly diverse workforce. There is also a growing interest in the global autism community to bring public awareness of autism and the people it affects to law enforcement professionals. As a parent of a young man with autism and reporter/researcher on this topic since 1991, I hope to bring you useful information about autism and the law enforcement community. Sharing critical autism recognition and response information with our law enforcement, first response, criminal justice and educational communities is my mission. The goal? Better community experiences for everyone.

I'm telling the world about our stories in the best way I can: through my books and articles, through train-the-trainer workshops for law enforcement, first responders, and educators, and through the media. Autism awareness and education for law enforcement, emergency response and criminal justice professionals is a personal, and now, professional part of my life. Public awareness--telling others about our everyday lives as families affected by autism--is a key element of my personal and professional advocacy. Positive outcomes for our loved ones can be the result when we take the time to educate others about autism spectrum disorders. I want to tell your stories, too. Let me know what they are.
A couple of key discussion points that Charles raises:
One of the truly remarkable statistics referenced in this report is that"[p]ersons with autism and other developmental disabilities are estimated to have up to seven times more contacts with law enforcement agencies during their lifetimes (Office of Special Education and Rehabilitative Services News In Print, Winter, 1993)." In view of the likelihood of contact between law enforcement and persons with disabilities, these guidelines should be considered in developing IEP goals, BIPs and transition plan goals.

The level of candor of this report is refreshing. It openly states in the training section for police that "[a]utism issues remain un-addressed in standard police officer training programs." ... Moreover, one area of inquiry should be to your local police, fire and paramedics as to their level of autism training and awareness.
The main part of the report includes sections on What Families Can Do To Reduce Police Interactions and Information for Persons with Autism. The site also includes a Law Enforcement Handout.

I've not had a chance to read through it completely, but have added it to my (all too long) reading list. I'll also be looking at it as a possible addition to Autism for Parents. Let me know what you think.

tagged as: , , , , ,

12 April 2006

New "Blogs by Parents" listings on "Autism for Parents"

Slowly but surely, I'm building up the resources on Autism for Parents. The latest additions are the following blogs by parents of autistic children:

tagged as: , ,

Some thoughts on denial and an autism diagnosis (or: The end of the world as we know it)

When a parent experiences denial on receiving an autism diagnosis for their kid, I think it is important for them to understand what exactly they are in denial about. At first thought, it would seem obvious that they are in denial about their child having a "devastating disorder" (since I believe this is how most - not all - parents initially conceptualize autism). The proverbial "end of the world."

But is this really what they are in denial about? Or are these parents in denial about what the diagnosis means to them, to their expectations of the future and what it means to have kids? Or, in keeping with the theme, the "end of the world as they know it."

I recently came upon a couple of essays that capture this better than I ever could have hoped to. (As you read through these two essays - and I strongly encourage you to read each in their entirety - keep in mind that both were originally written more than 10 years ago. We've come so far, but still have a long way to go.)

From the essay Cure, Recovery, Prevention of Autism? by Phil Schwarz:

I think that most people who seek a "cure" for their loved ones' autism do so with the best of intentions: they see their loved ones having difficulty or inability to function, and want to help them overcome those difficulties or inabilities.

The statement "I wish my child were not autistic" implies, at least to me as a parent, and also as an inhabitant of the borderlands of autism myself, that the parent making the statement seeks a change in the inner essence of who the child is.

Would we feel as comfortable with the following statement, about equally fundamental stuff of which the self is made: "I wish my child were not female" ?

What is really going on with that latter statement? Being female is not considered, at least in the cultures that frown upon that statement, a disability, overtly at least. So why would a parent harbor such a feeling, even covertly?

I think because they had, and still have, unmet expectations. Perhaps a boy would be easier to relate to, to bond with -- especially for a father. Perhaps the family has no boys. Perhaps the parents really really wanted a boy....

Now go back to the statement "I wish my child were not autistic".

There is an incredible amount of devaluation based on low societal expectations about what autistic people can accomplish. Autism itself is still considered shameful by far too many. (especially parents, imo. -brett)

It is very much more difficult for most parents to lay to rest unmet expectations about neurologic typicality, and dreams based upon those expectations.
And from the essay Don't Mourn for Us by Jim Sinclair:
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective.
It's the end of the world as we know it, and I feel fine. How about you.

tagged as: , , , , ,

06 April 2006

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:

05 April 2006

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

04 April 2006

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

03 April 2006

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: ,

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: , , ,