Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

Friday, May 25, 2012

Autism and Your Vote

Here in the United States we'll be voting for president soon. (Well, in six months.) For myself and many others, the candidates' stances on autism is of particular interest. With the CDC reporting that 1 in 88 children born in the US has autism, this is an issue that should matter to everyone, even if you don't have a loved one with autism nor have autism yourself. Without attempting to pass opinion, I wanted to talk about the candidates' positions on the subject.

My main concern about Mitt Romney with regards to autism is that there doesn't seem to be a whole lot known about his stance. The biggest indicator is a YouTube video in which a 9-year-old boy with autism asked Romney what he would do to help autistic kids if he were elected. His response, summarized:

  • He would support funding scientific research that results in health benefits to the American public.
  • His remarks only addressed searching for a cure for autism and other disorders, and made no mention of anything he would do in other respects to support those who currently have it.
  • He indicated that while he supports funding these research programs, that support is contingent on being able to pay for them. He would not be willing to increase our debt to foreign powers to do so, but he would slash budgets for other programs.

As for the incumbent, we have the advantage of seeing what he has actually done in comparison to what he promised. Actions speak louder than words and all that. The Tampa Bay Times maintains PolitiFact, a site devoted to not only fact-checking candidates' claims during speeches and debates, but also tracking whether or not a candidate keeps their campaign promises after they're elected. Below is the list of Obama's campaign promises related to autism that I was able to find through their site. As with pretty much every elected official ever, some promises were kept, some were broken.

Promises Kept

In The Works (some action taken, but promise not fulfilled so far)

Promises Broken

If you have other information (from credible sources) on the candidates with respect to autism, please send it my way and I'll add them to this post. Whatever you decide, please remember to vote!

Friday, January 20, 2012

Utah House Bill 69

The Utah legislature starts a new session on Monday, and one of the bills to be considered is H.B. 69: Insurance Coverage for Autism Spectrum Disorders. This bill would require insurance companies to provide coverage of up to $50,000 per year for proven, effective therapies for individuals with autism spectrum disorders (ASDs). At this writing, 29 states have such a law currently on the books, 14 (including Utah) are considering an autism coverage reform bill in 2012, and 8 have no such law and are not currently considering one.

Most insurance companies do not provide any coverage at all for therapies or medications used to treat ASDs when not mandated by law. In fact, most won't even cover diagnostics to test for autism, and if even one aspect of a doctor's visit is related to autism, many will refuse to cover the entire visit. (Parents quickly learn to segregate their autism- and non-autism related doctor visits.)

One might ask why insurance companies don't provide coverage for autism. Some point out that autism has no known cure and that few are able to overcome it and live fairly typical lives. This excuse ignores the fact that insurance often provides coverage for other incurable conditions such as schizophrenia, and even for potentially lethal conditions with lower rates of recovery such as cancer and heart disease. (Lethality actually increases the odds that a company will cover a condition, partly because if the patient dies they will no longer be incurring medical costs.) Another assertion is that diagnostic and therapy services are handled by schools. While the school-based programs do work for some kids, they don't work for others, and budget cuts have resulted in many such programs being woefully under-funded and inadequate.

A question we must ask is whether such a law would constitute a net positive influence on society. Insurance companies and some businesses oppose the law, saying that providing this coverage would require an increase in premiums. How much of an increase? The Council of Affordable Health Insurance estimates that an ASD coverage mandate would raise premiums by 1%. Long term, this may increase to about 3% as services expand and if autism rates continue to rise.

What those who oppose ASD coverage mandates often fail to consider is the cost society bears as a result of not treating autism. Those who are not able to overcome autism remain dependent on others for their entire lives. Many families go into massive debt in order to try to pay for autism treatments, leading to increasing defaults on loans, foreclosures, bankruptcies, and welfare costs. A number of autistic adults end up as wards of the state when their parents die or become unable to care for them. The Harvard School of Public Health estimates that the total cost of caring for the average autistic individual is $3.2 million, and that the total annual cost to society is $35 billion. Caring for people with autism is going to cost the American public one way or another, whether through insurance premiums or taxes. From a purely financial standpoint, it makes sense to invest in treatments that have been demonstrated to help individuals overcome autism and become productive members of society, who will then be paying into the system instead of drawing from it their whole lives.

Having a child with autism has more than just a financial cost. It changes a family forever. Parents of children with autism experience greater incidences of fatigue, sleep deprivation, stress, clinical depression, and marital problems. They struggle with grief for the future that their child may never get to have, nagging feelings that there must have been something they could have done to prevent it, hopelessness at the bleak prognosis for most children with autism, and guilt at having to shortchange the child's neurotypical siblings. They also experience massive amounts of judgmental behavior from others, ranging from well-meaning comments or parenting advice given in ignorance of the unique challenges of autism, to dirty looks when a child has a meltdown in public, to confrontational assertions that their child's problems stem from lazy parenting. (Trust me, raising a child with autism is not for laissez-faire parents!)

Please, take the time to contact your Utah legislator and ask them to support S.B. 69 to help Utah's autism community.

Wednesday, September 7, 2011

Response from Senator Hatch

I received a reply to the letter to Senator Hatch I sent in July. Actually, it came a while ago and I just hadn't gotten to posting it here. Note that the HELP Committee meeting was postponed twice, so the meeting date isn't the same. The footnotes give my commentary on his response.

August 11, 2011

Mr. Robert Walker
[ADDRESS REDACTED]

Dear Mr. Walker:

Thank you for writing to express your support for legislation related to autism spectrum disorder (ASD).1 I appreciate hearing from you and value your input as a father of children with ASD.

As you know, recent scientific revelations that the prevalence of autism could be as low as one in 150 individuals2, and that there may be a genetic link to autism, point out the need for continuing research.

Senator Robert Menendez introduced the Combating Autism Reauthorization Act (S. 1089) on May 26, 2011, and it has been referred to the Senate Health, Education, Labor and Pensions (HELP) Committee. The original Combating Autism Act (P.L. 109-416), which was signed into law in December 2006, was passed to provide better integration of the health, education, and disability programs already available.3 S. 1089 would reauthorize CAA for another five years.

As you know, the HELP Committee is now expected to consider this legislation in September.4 As a member of the HELP Committee, and an original cosponsor of the 2006 autism law, I will bear in mind your insightful comments when CAA reauthorization legislation is considered by the Committee.5

Again, thank you for writing.

Your Senator,
[SIGNATURE]
Orrin G. Hatch United States Senator

OHG:kll

1 It really ought to say “autism spectrum disorders” (plural) here. He speaks about it as if it were a single disorder, despite the word “spectrum” in the name. Not a major point, but it is an indication that Sen. Hatch may not be very knowledgeable about autism spectrum disorders.

2 The numbers vary depending on who you talk to. It's difficult to get good numbers on autism prevalence because a lot of people go undiagnosed for years, different countries have different diagnostic criteria, and the diagnostic criteria have changed over time. The CDC reports that autism prevalence in children is estimated to be somewhere between 1 in 80 and 1 in 240. (The average, 1 in 110, is typically the number cited.) Prevalence is lower (meaning a smaller percentage of people affected) when you include adults because some adults are undiagnosed and because therapy helps some people with autism to eventually overcome the symptoms and no longer manifest as having an ASD (though technically they still do). Prevalence appears to be increasing dramatically, but it is undetermined whether that is due solely to increased awareness and broader diagnostic criteria or there is an actual increase in incidence of ASDs.

3 I feel this is something of an understatement. The Congressional Budget Office estimated in 2006 that the original bill would result in a $300 million increase in autism spending, which included significant increases in amounts for biomedical research grants.

4 Specifically, after being delayed twice, they were slated to meet on it today.

5 The Senator avoids stating his intentions with regards to the bill. This is not surprising, as between the time he wrote it and today he might find new information that may change his position on the bill. Having sponsored the original bill, one might expect that he would support extending it, and the language indicates a positive inclination towards it. However, while he was a co-sponsor on the original bill, he is not co-sponsoring this one, which says to me that he is at least less favorable towards it than he was previously. I'll definitely be keeping an eye on this bill.

Thursday, July 28, 2011

Letter to Senator Hatch

The Honorable Orrin Grant Hatch
104 Hart Office Building
United States Senate
Washington, DC 20510

Re: SB 1094

Dear Senator:

On Wednesday, August 3 at 10:00 am in room 430 of the Dirksen Senate Office Building, the Health, Education, Labor and Pensions (HELP) Committee will be meeting to discuss SB 1094, the Combating Autism Reauthorization Act of 2011 (CARA). This bill proposes to extend the original sunset date (September 30, 2011) of the Combating Autism Act of 2006 (CAA) for another three years. As you are a member of the HELP Committee, I am writing to ask you to attend this meeting and to vote in favor of SB 1094.

There is still a lot we don't know about autism, and continued research is desperately needed to better understand Autism Spectrum Disorders (ASDs) and discover ways to help those who are afflicted with them. Our own University of Utah has made significant strides in autism research. This research would be severely curtailed without the funding that SB 1094 would authorize.

I understand that there is currently a major focus on federal spending, and that there are many who would be inclined to vote no on this bill, feeling that it cannot be afforded. I am of the opinion that while we do need to cut back on many programs, we cannot afford NOT to fund this research. Only a small percentage of autistic individuals eventually become able to hold jobs; most are financially dependent on family members or the state for their entire lives. Since many states (including Utah) do not require insurance companies to cover autism therapy, many families go into severe debt to pay for therapy for their child(ren). Frequently, these families end up in bankruptcy and living on welfare as a direct result of these expenses. Add to that the lost productivity from these individuals and their loved ones who must care for them, and the expense to our nation due to autism is immense.

Research can help us find more effective and less expensive therapies. Beyond the great personal good this research can do, from a purely financial standpoint every individual who is recovered and becomes self-sufficient will be an asset to the state instead of a burden. (Additionally, if Utah were to require insurance companies to cover autism therapies, families would be able to afford therapies for their children and fewer would end up on welfare.)

My 5-year-old daughter, [NAME REDACTED], has autism, and my 3-year-old son, [NAME REDACTED], has Pervasive Developmental Disorder (PDD-NOS), which is also considered an ASD. I would do anything I could to help them to live full, productive lives. This research would be valuable to them and to people with ASDs across our nation. I respectfully ask that you please attend next Wednesday's meeting and vote yes on SB 1094.

Thank you for taking the time to read this letter.

Sincerely,

Robert J. Walker

Thursday, March 18, 2010

Secrets of Success

This week I gave a presentation at work. It was part of a series called Secrets of Success, in which each employee in the company gets a turn to give a presentation on what they have personally learned about success. I was quite nervous about mine, as it was very personal, but I was pleased that it was well-received.

I had a hard time deciding what I would say for a while. I didn't know what I could say that would be different from what others had already presented. So I started thinking about other people I knew who were successful, and what I've learned from them that I could share. Suddenly, one particular person popped into my mind, and that choice laid out everything I would say, including a rather unconventional opening.

What follows is a text version of the presentation.

UPDATE: On June 9, 2010, this article was featured on the official Facebook page for Autism Speaks. I am truly humbled and appreciative of the many positive comments I have received, both on this blog and on Facebook. However, there has also been a little bit of misunderstanding about the intent of the piece. It is not intended to tell you how to “fix” your autistic child. It is simply about what I have learned about success as I have gone through (and continue to go through) this experience with my daughter. Thanks again, and to those who have autism or love someone who does, “Never give up, never surrender!”


Secrets of Success

by Robert J. Walker (with apologies to Theodor Geisel)

What is success? Can anyone say?
Is it something you put on your résumé?
Is it big money? Is it great fame?
Is it a building adorned with your name?
We're always chasing success in this biz,
But how do we know what success really is?
There are lots of people who have lots to say,
And it's hard to know whose idea to obey.
So I said to myself, “Self, who can you ask?
Whose success is most up-to-the-task?”
Then finally it hit me. I knew who to call,
The person who'd be my guide through it all,
My guru, my teacher, my insightful sage!
I never thought she'd be four years of age!

My daughter

My daughter is the most successful person I know, even though by typical standards she has accomplished far less in her life than most children her age. In order to understand why, you need to know a little more about her.

She has autism.

Autism is a neural development disorder characterized by impaired social interaction and communication, and by restricted, repetitive and obsessive behavior. It affects information processing in the brain by altering how nerve cells and their synapses connect and organize. Autism belongs to a wider group of conditions called autism spectrum disorders (or ASDs), which include similar afflictions such as Asperger syndrome. ASDs affect about 1 in 110 people.

Autists frequently have overstimulated senses. A standard fluorescent light can seem like a strobe. A digital watch alarm might sound like a fire truck. A lightly-scented deodorant could smell like someone bathed in perfume. A mild seasoning may taste as strong as garlic or curry. A sweater might feel like bugs crawling on your skin.

Since many autistic children are non-verbal, they can't tell you about what's bothering them or express their needs. Because of this, they tend to behave in ways that are considered inappropriate much more frequently than their peers: screaming, throwing temper tantrums, biting, gouging, scratching, banging their heads and throwing themselves around. Many don't respond to their own names.

Some have low IQs. Others are highly intelligent, yet this intelligence can go unnoticed when they lack an effective way of communicating. Many will rarely smile, laugh, or even make eye contact; and many have few or no friends. Only 4% of autists are eventually able to maintain employment, live independently and have a meaningful relationship.

There is no known cure.

My daughter initially seemed like most other autistic children. When she wasn't screaming incoherently, she was quiet and withdrawn. She wouldn't respond to her name or look you in the eye, and she rarely smiled. You could tell that there were thoughts and feelings locked up in that little mind of hers, but she couldn't share them. She was a lonely island of human consciousness, and that made her frustrated and unhappy.

Now, despite all the challenges of autism, she is beating the odds. While her verbal ability is still significantly behind that of her peers, she is able to communicate many of her needs, wants and feelings. She smiles. She laughs. She makes eye contact and usually responds to her name. She knows her letters, counts to twenty and is even starting to learn to read and make friends. She still has a long way to go, but given the bleak outlook for most autistic children, her teachers are astounded at how well she is progressing.

I'm going to share with you the attributes and behaviors that she demonstrates that have contributed to her advancement, along with some secrets of success that we as her parents have learned along the way. I'm still working on these things, but I've found that the better I follow them, the more successful I become.

Don't you dare give up!

Despair is the true enemy of success. Many parents, when they learn their child has autism, give up on their dreams for that child's future. The child picks up on this, and they give up too. They become two years old forever, firmly entrenched among that 96% who never overcome it. The 4% that make it get there partly because their parents didn't give up on them, and they didn't give up on themselves. When there's nothing to gain by giving up and everything to gain by continuing to strive, for heaven's sake, keep striving!

Not failure, but low aim, is the crime. In great attempts it is glorious even to fail.

—Bruce Lee

Have the right perspective!

Nothing changes your perspective on life quite like having a child with a disability. I used to envy the parent who complained about how their kid just won't shut up. For a long time, we begged ours to say anything. So many seemed to take for granted all the simple things that their kids do that we would call little miracles in our daughter.

The right perspective helps you see what's really important and what's not. Perspective is vital to success, because how successful can we really say we are if we focus on all the wrong things? So sit back and take inventory of your work and your life, and ask yourself: What really matters? Why are you doing what you are doing?

Even if your priorities are straight, the right perspective will make your work and life better by giving you an appreciation of what you have. It is something that will buoy you up when things get tough.

Make it work!

Most kids with autism are very literal thinkers. They don't engage in pretend play and they often have trouble innovating or working around the problems they face.

One day, my wife saw my daughter pointing at the top of the refrigerator. Since she often likes people to name the things she points at, my wife looked up there and saw the kitchen timer, so she said “Clock.” She thought for a moment, then gave the word “red” in sign language. That's when my wife realized that she wanted some Doritos, which were in a bright red bag sitting on top of the refrigerator. Typical autistic children don't do this; when an attempt to communicate fails (if they try at all), they just melt down.

This is a simple example, but it has a really important lesson. When things don't work out the way we want, we sometimes “melt down.” We throw up our hands and start complaining instead of doing the productive thing, which is shutting up and figuring out how to make it work. Our minds are fascinating machines, with abilities that are still unmatched by technology. Put that mental horsepower to work on a solution instead of grousing about the problem!

Hunger for knowledge!

For some time, my daughter would frequently sit quietly in a corner with a toy (not so much playing with it as just holding it), seemingly oblivious to the world around her. Part of what helped break her out of this was our discovering her fascination with animals—not stuffed ones or animated ones; real ones. We took her to a park one day, and she saw someone walking their dog. Completely out of character for her, she ran up and wanted to pet the dog. She was completely entranced by the animal.

We took her to the zoo and she went bonkers over it. We took her to the aquarium and she went bonkers over that. We got her books with photographs of animals instead of drawings, and suddenly she was interested in books. This marked a turning point for her: she didn't sit passively anymore; she wanted to engage with the world and learn about it.

Our education shouldn't be restricted to our formal schooling. We should hunger after knowledge and be open to opportunities to learn and improve. Any day where you don't strive to learn is a day of wasted potential. Find an area where you want to improve, and get going!

Find a mentor!

My daughter would not have been able to make the progress that she has without our help, and we would not have known how to help her if we hadn't looked to others to guide us. Once you know how you want to improve, you can benefit from the guidance of another who is more experienced.

How do you choose a mentor? Think of the people you know who have the knowledge and experience that you're seeking. Accepting instruction and correction from someone else takes a bit of humility, so your mentor should be someone you trust and respect. Your mentor needs to be someone who cares about your advancement, someone who wants to see you succeed. Both you and your mentor must be willing to devote the time and effort that will be required for the mentoring process.

Once you've found someone who could be your mentor, ask! You might be nervous, but if they decline you're no worse off than you were before, and most people are flattered that someone wants to learn from their experience.

Success is not what you achieve. It is what you overcome.

It could be said that my daughter has not achieved much thus far in her four years of life. Most people can't understand what she says, she's still in diapers, and she still has a fair number of behavioral problems. But what she has overcome is more than many adults ever have.

Most of us aren't forced to face those kinds of challenges. We spend large parts of our lives without having to struggle against anything nearly so difficult. But if success is measured by what we overcome, that life of comparative ease may very well stand in our way of our success. Overcoming challenge causes us to grow in ways that just aren't possible when everything's easy. You can't coast towards excellence, you have to get out and push.

So if challenge isn't coming to you, you have to go seek it out. You'll sometimes have to do difficult things when you don't have to, things that are hard enough that failure is a real possibility. You'll work, you'll strain, you may even fall down and cry more than once, but you'll rise stronger, wiser and better than you were before.

My four-year-old daughter has shown me the way.
Success isn't something on your résumé.
It isn't big money. It isn't great fame.
It isn't a building adorned with your name.
Success isn't anything that you have done.
It's not what you achieve. It's what you overcome.

Tuesday, September 29, 2009

Blessings in Disguise

This post spoils the ending to the film Signs. If you've seen it already or don't mind having the story revealed, read on.

I like big, noisy popcorn flicks as much as the next guy, but I really enjoy the kind of film, book or game that causes me to reflect on my own life. Recently, I was thinking about the 2002 film Signs, and I pulled it out and watched it again. I enjoy it not only because it's a well-done thriller and an interesting story, but also because it's one of the few movies that deals intelligently and respectfully with a Christian character. Hollywood's disdain for Christianity is unsubtle: people of Christian faith in film are usually either wicked antagonists (the classic “wolf in the fold” formula), oddball cultists, or bigoted simpletons provided for comic relief. (You know the ones I mean: they politely assert through plastered-on smiles that everyone who does not believe as they do is going to burn for eternity... but have a nice day!)

Anyway, that isn't why I am bringing up the movie; I'm not writing a review nor a criticism of Hollywood in general. If you're not familiar with the plot, here are the relevant bits:

Graham Hess is a former Episcopal priest. With the help of his brother Merrill, he cares for his children, Morgan and Bo. Morgan suffers from asthma, and Bo has an unusual quirk: she is always leaving half-finished glasses of water around the house, claiming that she can't drink them because they taste funny or are contaminated. Merrill is a former minor league baseball player who always swung at every pitch. (He held minor league home run and strikeout records.) Graham himself had lost his faith in God ever since his wife was killed in a traffic accident caused by a neighbor who fell asleep at the wheel. (The man mentions that he had never fallen asleep while driving before and never has since.) He has recently been having repeated flashbacks of the incident. Her last words to him were to tell him to “see” and to “tell Merrill to swing away.”

Graham's feelings about God are brought into even sharper focus when his family is forced to barricade themselves inside their house to defend themselves against an extraterrestrial attack on Earth. Graham struggles with the problem of evil; he feels abandoned and is angry with God for permitting his family's suffering, particularly his wife's death and Morgan's asthma, and now the alien invasion.

At the end of the film, Morgan is taken hostage by one of the aliens, which threatens to kill him with poison gas. The fright causes Morgan to have an attack and fall unconscious, and Graham must act quickly to prevent his death from asphyxiation. He suddenly recalls his wife's last words, notes Merrill's baseball bat mounted on the wall, and tells Merrill to “swing away.”

Merrill moves in with the bat, and the alien gasses Morgan and drops him. In the ensuing fight, the alien is knocked backwards, causing one of Bo's glasses to fall over and dump water on it. The alien reacts with pain, and Merrill looks around and sees half-full glasses of water all over the room. He proceeds to knock them at the alien to defeat it, while Graham takes Morgan outside and administers an epinephrine injection. He realizes that the asthma attack was a blessing in disguise: it closed off Morgan's lungs and prevented him from inhaling the poison. Morgan revives, and the last shot shows Graham dressing in his priestly clothing once more.

While it was marketed as a movie about aliens, crop circles and such, Signs isn't really about any of that. It's not even so much about faith, as Graham doesn't really demonstrate it: he has to “see” to believe. He doesn't receive signs because of belief, but rather by grace, in spite of his unbelief. What it's really about is how we react to adversity. It's about how sometimes suffering has a purpose.

I've thought a lot about dealing with adversity recently, especially when I was preparing a Sunday school lesson about Joseph Smith's captivity in the ironically-named Liberty Jail. His situation was decidedly unpleasant: he was unjustly incarcerated in a cold, dark, unsanitary basement cell, the ceiling of which was not high enough to permit him to stand erect. He was given only a little food, and that which he was given was so unfit for consumption that he and his fellow prisoners ate only when driven to desperation by hunger. Sometimes the food was poisoned, making the prisoners violently ill. He also knew that while he sat in that dungeon, the people he lead were being persecuted and killed. In that kind of situation, it is understandable that one might feel some amount of self-pity. Yet Liberty Jail is often referred to as a “temple-prison,” a place and circumstance which permitted Joseph to receive important revelations.

I've mentioned before that I have to deal with adult attention-deficit disorder (inattentive type). It has always been a significant problem in my life, partly because it is an obstacle standing in the way of what I want to accomplish, but mostly because of how it affects others with whom I interact:

Individuals with ADHD essentially have problems with self-regulation and self-motivation, predominantly due to problems with distractibility, procrastination, organization, and prioritization. The learning potential and overall intelligence of an adult with ADHD, however, are no different from the potential and intelligence of adults who do not have the disorder. ADHD is a chronic condition, beginning in early childhood and persisting throughout a person's lifetime. It is estimated that up to 70% of children with ADHD will continue to have significant ADHD-related symptoms persisting into adulthood, resulting in a significant impact on education, employment, and interpersonal relationships....

Adults with ADHD are often perceived by others as chaotic and disorganized, with a tendency to require high stimulation in order to diminish distractibility and function effectively.... Often, the ADHD person will miss things that an adult of similar age and experience should catch onto or know. These lapses can lead others to label the individuals with ADHD as “lazy” or “stupid” or “inconsiderate.”

Adult attention deficit hyperactivity disorder.” Wikipedia

I have to give Gorgeous Wife a lot of credit for dealing with my scatterbrained self. ADD is one of those things that, if you haven't experienced it yourself, you can't really know what it's like. It would be like someone talking about the view from the top of a mountain without ever having climbed one, or a man speculating on how much it hurts to give birth. From her perspective, it must be difficult to comprehend that a person could have so much trouble with tasks that seem so simple to her, which makes me all the more grateful for her understanding attitude towards the situation. What upsets me most is that she has to be so understanding in the first place.

I try to make things easier on her. Medication helps, though there isn't a “silver bullet” that makes all my symptoms go away. With the medication's recent decrease in effectiveness, I've been taking a closer look at my “coping strategies:” the artificial mechanisms that I employ to compensate for my natural deficiencies. I have to set alarms to remind me to do many things. (Have you ever set an alarm to remind yourself to do something in five minutes? I have.) I have to devise mnemonics or write notes to remember things that most people could confidently keep in their heads. I have to take steps to counter my mind's natural tendency to get distracted by other things or just go off into space. Part of me is annoyed that I have to take these artificial measures in order to function, while others seem to accomplish them so easily. For quite some time, I thought only negatively about my condition. Not to be melodramatic about it, but it was my curse.

Eventually, I discovered that there were some positive aspects to it. I learned that if I worked hard enough at corralling my wandering attention onto one activity, I could sometimes coax it to shift into a sort of hyper-focus, where I would lose awareness of everything but the task at hand and nothing short of a fire alarm could distract me from it. This does have its own set of problems. In this mode, I might have a conversation with someone, but my mind is still entirely on my task, and upon their leaving the room, I would not only have forgotten what they said, but that they were even in the room in the first place. But it is good for “buckling down” and getting something accomplished, even though it is tricky to get into that mode.

But probably the biggest revelation came a while back when I was speaking to my mother. We were talking about my daughter's progress in dealing with autism, and I mentioned how I felt that I could very much relate to her circumstances, to the frustration she must feel that she finds it so difficult to accomplish things that others are able to do with ease. My mother replied that perhaps that was why I have ADD, so she would have someone who understood her in a way that most people couldn't. I had thought of my better understanding of my daughter's condition as a result of my ADD; it had never occurred to me to that it might actually be a reason for it.

In Signs, nearly all of the characters have something happen in their life that ultimately contributes to their survival during the invasion. The neighbor fell asleep at the wheel that one time and accidentally killed Graham's wife, but the flashbacks of that incident showed Graham the way to help his family survive. Merrill got the home run record so that he would have his bat hanging on that one spot on the wall, right where he could get at it when he needed it. Bo left water around the house so that they would have an extremely potent weapon against the alien easily at hand. Morgan had asthma so that he would survive the poison gas. Could it be that my struggle with ADD was to prepare me to have a daughter with autism?

People break down into two groups. When they experience something lucky, group number one sees it as more than luck, more than coincidence. They see it as a sign, evidence, that there is someone up there, watching out for them. Group number two sees it as just pure luck. Just a happy turn of chance.

I'm sure the people in group number two are looking at those fourteen lights [on the alien spacecraft] in a very suspicious way. For them, the situation is a fifty-fifty. Could be bad, could be good. But deep down, they feel that whatever happens, they're on their own. And that fills them with fear. Yeah, there are those people.

But there's a whole lot of people in group number one. When they see those fourteen lights, they're looking at a miracle. And deep down, they feel that whatever's going to happen, there will be someone there to help them. And that fills them with hope.

So what you have to ask yourself is: what kind of person are you? Are you the kind that sees signs, that sees miracles? Or do you believe that people just get lucky? Or, look at the question this way: Is it possible that there are no coincidences?

Graham Hess, Signs

Monday, March 16, 2009

More Events in the Autism World

There are bills in the House and Senate that propose to allow the creation of tax-free trusts for those with disabilities, similar to 529 college savings plans.

Research published recently in Pediatrics (the official journal of the American Academy of Pediatrics) have identified a gene that may be a contributing factor to autism and gastrointestinal disorders occurring together. The study found that over 55% of those with autism and gastrointestinal disorders carried a variation in a gene called MET. Over 30% of people with autism also suffer from gastrointestinal disorders, compared to less than 10% of those who are not autistic.

Monday, February 9, 2009

The Thiomersal Controversy

UPDATE: With the recent fallout regarding Andrew Wakefield, Autism Speaks has, quite sensibly, changed focus somewhat, so the original wording of this post may no longer reflect AS's stance on the issue. I've been intending to give this update earlier, but didn't get around to it. However, as my Secrets of Success post has now been featured on the official Facebook channel for Autism Speaks, I'm noticing a significant uptick in traffic, and figured I'd better get around to the update!


Some interesting developments in the autism world, especially with regard to the immunization controversy. Last month a top executive at a major autism group called “Autism Speaks” resigned over a disagreement with the group. A major component of AS's focus is fighting against immunizations due to concerns about thiomersal. The group's VP of Communications, Alison Singer, says that copious scientific research into the subject has shown that there is no causal link between thiomersal and autism. She feels that AS ought to stop putting so much effort into the immunization fight and redirect those energies into more promising avenues. The other AS execs, however, appear to be too invested in the fight to give it up, and so they and Singer parted ways.

Shortly afterward, the findings of a new study were released. A group of 1,403 children who had received thiomersal in their vaccines ten years ago were evaluated and found not to have any significant decrease in neurological function when compared to children who had not been exposed to thiomersal.

Now it's been discovered that the original research about the MMR immunization may have been falsified to show a link to autism. Evidence presented by the UK's General Medical Council shows that the data presented in Dr. Andrew Wakefield's report on the original study on the MMR vaccine are not supported by the medical records of the patients used in the study, and ten of the original thirteen contributors to the study have retracted their interpretations of the findings since its publication. Many patients' symptoms which were blamed on the MMR vaccine appear to have been reported before the vaccine had even been administered. The original study only involved a dozen children, which is not even close to a large enough sample to give any confidence to the results.

The 1998 report resulted in a significant drop in the administration of the MMR vaccine to children in the UK, resulting in a 24-fold increase in measles cases in 2008 compared to 1998, two of which resulted in death. It is believed that Wakefield may have falsified the results of the study due to a conflict of interest because the children used in the study had been recruited through an attorney preparing a lawsuit against MMR vaccine manufacturers, and the hospital where the study was performed had received £55,000 to pay for the research. Wakefield and his colleagues deny allegations of professional misconduct.

More autism news, apart from the thiomersal controversy. Multiple states are considering legislation that would require insurance providers to cover diagnosis and proven treatments for autism. Utah's bill, popularly known as Clay's Law, would require a maximum annual benefit of $50,000 for children under 9 and $25,000 for children between 9 and 17. If passed, the bill would go into effect on July 1, 2010. From a purely financial standpoint, it makes a lot of sense to spend money on early intervention treatments for autism. Autism therapy can be very expensive, and many families descend into poverty to pay for it and become burdens on the state. Additionally, a child recovered through treatment can financially contribute to society instead of drawing from it for the rest of their lives.

Thursday, January 15, 2009

Talking to the Others

My daughter is turning three years old this month and is starting preschool. It is a class especially for kids with autism, with expert instructors trained in helping them with their particular challenges. We're hoping this will help with a number of issues that are troubling her.

One of the big ones is that she feels an obsessive desire to close doors, not in the sense that she feels that any open door must be closed, but that if a door is going to be closed, that she must be the one to do it. Usually, if someone else closes a door instead of inviting her to close it, she'll have a meltdown. She's also very picky about her food. We'd really like for her to have more variety in her diet, but the introduction of most new foods results in a lot of screaming. The preschool will hopefully help her with these issues, as well as with things like social interaction and potty training.

The biggest issue, however, is talking. She is slowly showing more and more desire to say words, but it's still more of a game with her and she doesn't use them much to actually communicate. We've had the opportunity to use some software that offers several activities that help promote skills related to speech, but her reaction to them is mixed; she's enthusiastic about some and averse to others. The inability to communicate verbally is the biggest obstacle to her learning and progress, so if nothing else, any improvement the preschool can help us achieve in this area would be a big win.

Some good news is that she is much more proactive than before about asking as best she can for what she wants. She can easily and effectively communicate that she is hungry, needs a diaper change, wants you to play with her or is ready for bed. She also no longer resists taking medicine or going to sleep. It's amazing how seemingly small advances like these can make such a big difference. She is generally a lot happier now than she was a year ago, when she was so frustrated because she didn't understand why nobody knew what she wanted.

I try to imagine what the world has been like for her. I picture her in a cell with transparent walls. All around her, she can see people looking in at her, and can hear their voices through the walls. She tries to call to them and ask them to try to get her out, or at least stay and talk with her for a while, but she don't realize that the walls somehow let sound in but don't let it out. All she gets are uncomprehending stares and looks of pity.

She soon realizes that for some reason, the Others, as she's come to call them, can't hear her. As the days go by, she eventually gives up trying to talk to them. Sometimes, the frustration gets the better of her, and she screams and cries and kicks the walls and throws herself around the room. Other days, she just sits despondently and listens to the Others talking.

One day, she wakes up and sees something new inside her cell. Somebody has installed a device with a button on the wall. She pushes the button. A light comes on briefly, but nothing else happens. She pushes it again and again, with the same result. This doesn't help at all! She screams and hits the device over and over, and quite accidentally, she hits the button again. Suddenly, the Others react with surprise. Something happened! A little experimentation results in a discovery: when she's holding the button down, the Others can hear her! She doesn't know it (because nobody's been able to teach her), but this device is a called an intercom.

The button is faulty, so the signal is laced with static and frequently cuts out. Communication with the Others is slow at first, and nearly as frustrating as not being able to talk to them at all. It takes a lot of patience and learning on both sides: she has to learn how to apply just the right amount of pressure to the button to get the light to stay on and keep the signal from cutting out, and the Others have to learn to decipher her words amidst the static. But slowly, comprehension replaces confusion.

There's still a long way to go. It'll be some time before they get good enough at communicating that they can plan together how to get her out of the cell. There are still some days of screaming and crying, but not as much. She's no longer alone.

Wednesday, December 3, 2008

Long Day, Good News

I took Monday off work to take the kids places they'd rather not be. I got up at early o'clock in the morning to take my ten-month-old son to an MRI appointment at 6:30 a.m. All things considered, he behaved remarkably well. He even smiled and cooed at the nurse while she was prodding him during the pre-scan evaluation. He only started crying when it was time to hold him down to get the IV put in, and that didn't last long. The hardest part was the administration of the sedative and his insertion into the machine. I held him as they gave the sedative. It acted surprisingly quickly, and it was only about 30 seconds before I had to support his head to keep it from flopping back like a newborn's. He fought to stay awake, but within a couple of minutes he'd gone limp.

Then I had to stand on a mat in the control room, just outside the scan room, and watch through the doorway while the nurses took him from me and placed him on the scanning bed. The noise of the machine was enough to make him wake up and cry a bit, so they had to give him an additional short-duration sedative to keep him asleep. They attached monitors that would ensure that he was not having an adverse reaction to the sedatives (pulse, blood pressure and oxygenation), and an oxygen line, since the sedatives cause his breathing to be more shallow. When they returned, I had to leave and wait in the sedation recovery room while they curtained off the control room and performed the scan.

As irrational as it is, a parent can't help but imagine the worst while waiting during a procedure or test, no matter how minor. The scan itself really only took about half an hour tops, but the minutes seemed interminable as I sat in a chair next to an empty hospital cradle. I soon gave in to temptation and began pacing the room. Finally, the nurses pulled back the curtain and brought him out. With them came the radiologist, who told me that he still needed to do a thorough reading of the scans, but from what he had seen they looked normal. The nurse laid him in the cradle and again attached monitors to him, along with a saline drip to keep him hydrated, since he was required to be fasting for the scan and had not had anything to eat or drink since he went to sleep the previous night.

Thus began the 90-minute wait for the sedative to wear off enough to wake him. This was almost as nerve-wracking as the scan, thanks to the list of things we'd have to watch for over the next 24 hours that the nurse gave me. If we can't wake him, call 911. Make sure you don't allow his head to droop during the ride home, since it can impede his airway. Don't let him curl into a ball while sleeping or otherwise position himself in any way that could constrict his chest or airway. Watch him carefully while awake, since he may have trouble holding up his head or maintaining balance while crawling or sitting. Keep him on clear liquids for several hours, since the sedative can make him sick to his stomach. If he throws up, try to prevent him from aspirating any vomit, as that can cause pneumonia.

I kept checking his breathing over the 90 minutes, even though I knew perfectly well that a monitor would start screaming bloody murder if he stopped breathing. It seemed unnatural that he was so still. He somehow looked smaller, sleeping with a pre-warmed blanket over him, almost as if he were a newborn again. Perhaps I was unconsciously recalling the last time he was in a hospital cradle, just ten short months ago.

At last it was time to wake him. Fortunately, he woke up readily and immediately started protesting that his tummy was empty! He greedily chugged down 14 ounces of juice and gave a vigorous burp, to the amusement of the nurses. After that he seemed pretty happy and fairly normal, except for his head being a bit wobbly. He was discharged and I drove us home while he napped.

That afternoon, I took my daughter to the school district headquarters to be evaluated, in order to determine whether she is eligible for special education services. For most of the two-and-a-half hours that we were there, she was inconsolable. Something about the place just set her off and she screamed like someone was killing her. My time there was mostly spent answering long questionnaires about her behavior with my right hand while holding her in my left arm and rapidly going deaf in my left ear.

Eventually it was determined, to nobody's surprise, that yes, she does indeed have autism and yes, she is qualified to receive special education services. A good thing, since I was not really wanting to get into a big battle with the school district should they have taken it into their heads that she didn't need the services. As soon as I took her hand and told her that we were “going bye-bye” she immediately cheered up, smiled and waved at the people she'd been screaming at the whole time, and literally skipped out of the building.

Final note: Yesterday, we received word that the final reading of my son's MRI scans showed no abnormalities. This leads the pediatrician to believe that the most likely cause of his strange manner of crawling is simply preference for the right over the left, and that with time it should straighten out. Good news, but it does mean that we now have to wait and see if that pathetic-looking crawl of his really does work itself out.

Thursday, September 18, 2008

Progress

T-minus nine days until the move. The blog has been rather quiet (as my time has been taken up with work and moving preparations), but I thought I should give people an update on my daughter. She's been progressing rapidly, to the surprise and delight of her parents and therapist.

Her favorite subject right now is letters. She knows them all; show her the alphabet and name any letter and she'll point to it. She has a set of cards which show letters of the alphabet on one side and an object beginning with said letter on the other. You can lay them out in front of her, letter-side up, say the name of one of the objects on the opposite side, and she will pick up the corresponding card and turn it over to reveal the object. She can do it in reverse, too; put them object-side up and say a letter, and she'll give you the right one.

Even more exciting is that she's beginning to say the names of some of the letters verbally. Some are clear as a bell, such as A, F, M or T; while with others she tends to say the sound rather than the letter (like B). She's also enchanted with Wheel of Fortune. Recently, she watched as a contestant called out the letter M, then she turned around, looked me straight in the eye, and said “Emmm.” Then she turned back around and pointed to the letter when Vanna revealed it and said “Emmm” again. (She also applauds along with the audience, spins in place whenever she sees the wheel spinning, and quite sensibly refrains from laughing when Pat Sajak makes a lame joke.)

A really interesting incident happened yesterday: Gorgeous Wife saw her pointing in the general direction of the top of the refrigerator. Since she likes to point at things to get you to say their names, Gorgeous Wife thought that perhaps she was pointing at the kitchen timer and said, “Clock.” She looked confused for a bit, then signed “Red.” As it turned out, she was trying to say that she wanted some Doritos, which were in a bright red bag sitting on top of the refrigerator. She pointed, but when that didn't get the desired results, and she didn't know the word for the thing she was pointing at, she circumlocuted. Maybe not a big deal for a typical kid, but from what I understand, it's huge for kids with autism.

Anyway, so things are looking really positive for her. The therapist has been astounded by how well she's been doing. (She resorted to using full-sheet note forms instead of the half-sheets; there was just too much progress to document!) Now that she can communicate somewhat better than she used to, she is a lot happier and seems to have a voracious appetite for learning new things.

Monday, July 14, 2008

Talk to the Hand

My daughter has learned a fair bit of sign language to help her overcome the communication barrier due to her autism. By itself, spoken words give only one sensory “bridge” between the word and the concept; signing gives her three: auditory, visual and kinetic. It seems to be (slowly) working, as the few words she does say vocally are the ones that she's been signing the longest.

Just like spoken languages, you encounter local variations in ASL. It's been kind of frustrating to look up signs on the Internet and discover different sites teaching different signs for the same concept in ASL. Anyway, after some searching I ran into Lifeprint.com, which at least tries to document the variations and give you an idea of what's the most common.

Anyway, below are some signs my daughter knows. She doesn't always spontaneously make the signs when she wants something, but she will usually make them if you say the word or show her the corresponding object. Try them out on her the next time you see her!

  • Mom and Dad (She tends to just point at the top of her head for “Dad.”)
  • Baby (She rocks her whole body back and forth instead of just her arms.)
  • All done
  • Milk (Easy: Think of squeezing a cow's udder.)
  • Eat
  • Drink
  • Cup
  • Cereal
  • Water (She loves this sign. If she makes it, it's not because she's thirsty. It means she wants you to turn on the faucet so she can play with the water!)
  • Potty (Not potty trained yet, but she understands the sign.)
  • Sleep
  • Please
  • Thank you (Still working on this one!)
  • Help
  • Stop (She doesn't really understand this as a command yet. Signing “stop” and “go” is mostly a game at this point.)
  • Go
  • More (We're teaching her to use this one in conjunction with “Please.”)
  • Cat
  • Dog (Multiple variations on this one; the one she knows is slapping the thigh then snapping, although she doesn't actually snap.)
  • Bird
  • Duck (She just uses the first two fingers and the thumb.)
  • Cow

Thursday, July 3, 2008

Huuh.

My 2½-year-old daughter stands in front of me, arms stretched out from her sides. “Huuh,” she says.

“Huuh” is special. A “huuh” is a hug, and it's one of the few things she actually asks for. In fact, it's one of the few things she can express verbally, because my little girl, standing there with her arms stretched out for a hug, is autistic.

We've suspected something like this for a while. We'd become increasingly concerned about her reluctance to talk, as well as other behavior, such as not responding well to her own name, some compulsive/ritualistic behavior and selectivity about food. Our pediatrician and a speech therapist have evaluated her, and have come to the consensus that she is mildly autistic. I know that the term mildly ought to be comforting, but it's hard to feel that way right now.

To some extent, I understand what she will have to deal with as she grows, having myself grown up with attention-deficit disorder. The frustration of struggling with things that come so easily to others is something to which I can definitely relate. To this day, I must take extraordinary measures to remember things like appointments or tasks, or to make sure that I don't lose things. If I am given a task, I am strongly inclined to just do it right then and there, because I know that the odds are high that I will otherwise forget it. For about a year when we moved into our new home, I had to maintain a ritual of tethering my keys and wallet to my belt until it became a habit to always put them back in my pockets instead of just leaving them in some random place. It's upsetting to see other people able to do these things with far less effort.

Fortunately, the prognosis for our daughter seems fairly good. She doesn't talk much, but she does say a few words, and she's slowly learning more. She also understands some sign language, and there are a number of common autism difficulties that are mild or absent in her. Nothing is certain at this point, but it seems that, despite some struggles, she will likely be able to live a relatively normal life, much like myself.

I look at my little girl, and I can tell there are thoughts and feelings trapped in that little head that she wants to tell me. I want to come home and have her tell me about what she ate that day, or the funny thing that Elmo did on Sesame Street, or the game that she played with Mommy. It may be some time before that happens.

But what she can tell me is, “I love you.” She stands in front of me, stretches out her arms, and says “Huuh.”