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On Politics & Autism: Presidential Style

  • Posted on April 18, 2012 at 8:35 AM

I have a great deal of respect for President Obama.  He is the most dignified person we’ve had in the Oval Office is my life time.  From everything I’ve seen, he’s a good man.

His accomplishments in regards to autism are, in my opinion, mixed, reflecting the mix we see in the greater autism community.

One example is the reauthorization of the Autism Act, which is a start but doesn’t do enough for those living with autism versus those researching autism.

Another example is World Autism Awareness Day, which sends a more positive, people-oriented message.

In regards to fiscal matters and the scope of government, I lean much more towards the conservative.  While I do not affiliate myself with any party, I vote for Republicans more often than Democrats.  (I prefer candidates who challenge the two-party dichotomy without going to the political fringes, but they are unfortunately rare at the state-wide or federal level.)

It’s like this:  Big government, overregulation, and elaborate social support systems don’t work.  They don’t produce a strong economy, a safe and prosperous populace, or social equality (three of the responsibilities I attribute to a federal-level government).  Ineffectual government, underregulation, and inadequate social support systems don’t work.  They don’t produce a strong economy, a safe and prosperous populace, or social equality.  Jumping back and forth between these two extremes doesn’t work, either.

It is my hope that the “flip-flopping” Mitt Romney would strike a moderate balance that blends the best of the liberal with the best of the conservative to produce something that might bring us closer to achieving those three goals.  Thus, my vote is Mitt’s to lose, assuming he actually wins the Republican nomination.

But autism is a big part of my life and social equity is a big part of what I expect from the federal government.  So, this worries me:

 (See this article for more information.)

Supporting research is all fine and good.  Putting the research decisions in the hands of the scientists (with appropriate checks and balances, which would be a key issue) might be fine, and certainly would be better than having politics drive researching decisions.  But autism isn’t a science, it’s a disability.  Autism isn’t a disease (Ron Paul’s video), it’s a difference.  It affects people.  These people are alive and living now.  And they need support.

As the sitting President, Obama has the advantage.  I don’t expect any candidate to be fully versed on all the issues that are thrown their way.  Much of the “common knowledge” about autism is, unfortunately, the drive for research.  President Obama has the advantage of needing to be better informed in order to make the decisions he’s made.  But still, Romney has to show the willingness to be informed.  This is promising, but is it enough?

Mommy Minder, Mommy Finder

  • Posted on January 3, 2011 at 8:00 AM

There are a few in the autism community that thoroughly investigate any studies they find interesting.  I’m not one of those.  But once in a while I do find a study that strikes a chord with me.  I don’t latch onto that study as gospel truth, but I do reflect on it once found.

One such study relates to visual skills.

Children with autism may lack certain visual skills needed to be independent in adulthood, new study findings suggest.

For example, they might find it harder than other adults to find shoes in the bedroom or apples in the supermarket, according to researchers at the University of Bristol in the United Kingdom.

The study authors asked 20 children with autism and 20 typical children to press buttons to find a hidden target among multiple illuminated locations in a room. One side of the room had more targets than the other side.

The children with autism took longer to recognize patterns in the test structure that would help them choose where to search for the targets. The findings suggest that the ability to search for objects in a large-scale environment is less efficient and less systematic in children with autism compared to typical children, the researchers pointed out in a university news release.

Personally, I’m a little skeptical that the findings (concerning finding hidden targets in multiple illuminated locations) can be generalized to finding shoes or apples, or that the delays in these skills identified in autistic children necessitates a similar lacking in autistic adults.  However, it does strike a chord with me.

One responsibility that seems to be primarily mine in my household of men is keeping track of things and finding them once they go missing.  To me, it’s always seemed to be a skill of thoroughness.  You put things back into their place, and when they’re not there you look everywhere until you find it.  But, perhaps, there’s more to it than that.

Perhaps I am able to identify things in a manner that my husband and children cannot.  Whether it’s a perceptual ability or a skill, I don’t know.  I mean, if you literally cannot see what you’re looking for—and by see, I mean differentiate the object you’re looking for among the clutter—, then how can you find it?  But, perhaps it is a skill.  Perhaps it is one of those skills that neurotypical individuals (and some neurodiverse individuals like myself) pick up more or less naturally to the extent that they don’t know how to teach it to those who do not acquire the skill in a similar manner.

It’s worth some thought.  Perhaps if I spent less time being annoyed that I am expected to know where everything is even after they’ve moved them and more time helping them develop this skill of minding and finding that I take somewhat for granted, then perhaps we would all be better off. 

On the other hand, from what I’ve heard from other mothers (and not just mothers of autistic kids), this seems to be a common complaint among women.  Perhaps it’s a male/female thing.  I mean, if the study didn’t account for the imbalance between boys and girls with diagnoses of autism, but had a balance between boys and girls in their typical peer group, then perhaps the difference they recorded could be less about typical/autistic development and more about male/female development.

So, what do you think?  Is it a skill or an ability?  Is it related to autism or something else?

Who Falls in the Gap?

  • Posted on October 4, 2010 at 10:38 PM

A recent discussion with Mark Stairwalt on Shift Journal produced this statement:

“And given your premise — which seems to be that autism is wholly beyond the ken of anyone not so diagnosed — your conclusions follow clearly enough. If we do start from the premise, though, that the experience of being autistic is a discrete phenomenon, a spectrum which *ends* at the edge of a wide, abrupt, and colorless gap rather than shading into the experience of the larger population, then it is we who have cut off the autistic population from the possibility of being understood and accepted as human — that’s not to be laid at the feet of anybody else’s shallow understanding, or the inscrutability of autism.”

Luckily, that was not and is not my premise.  (My premise, as per the discussion, was that “autistic” should not be used to reference stereotypical traits, like body rocking or heightened focus, that do not describe what autism really is.)  More generally speaking, my philosophical premise is that the autism spectrum resides wholly within the human spectrum, that they are connected, interlinked and overlapping.  For example, I consider myself to be too autistic to be neurotypical, but too neurotypical to be autistic.  (While I am autistic enough to identify quite well with my children, it is very rare for my autistic traits to interfere with my daily life.)

However, my beliefs regarding what should be seen aside, in our society there is a gap between “normal” and “autistic” that leaves many people cold—under-served, un-assisted and lost in the wilds between unfunctionably autistic and functioning well.  (This is not said to suggest that autistics are unfunctionable or that they should be seen as such, but merely to assert that this is a dominant belief in the larger population.)

As this news release states, some of the people who fall in this gap of “between” are, in fact, diagnosably autistic.  This news release, and the Swedish study associated with it, focuses on the under-diagnoses of girls with neurological differences (my wording, not theirs), including autism and ADHD.  In areas of the world or at different economic levels, diagnoses can be difficult for both boys and girls to obtain.  Furthermore, there is the obvious gap between how many adults could qualify for such a diagnosis and those who have access to a diagnostician who could give it to them.  Thus, some of those who fall in the gap are actually on the autism spectrum.

Along with those who qualify for the autism diagnosis, this study (as found in NPR) suggests that there are those, specifically siblings of diagnosed autistic children, who have autistic traits that either do not qualify for or do not receive a diagnosis of autism.  This article focuses on language delays and speech problems, but I’ve read elsewhere that sensory processing disorder is also more likely to occur in siblings without an autism diagnosis.  This suggests to me that if the language and sensory facets of autism can occur independently in siblings (and probably others), then the social facet of autism likely occurs independently as well.  All these facets of autism are not attributed to being traits of autism when experienced independently of each other—which suggests to me that they individuals also fall in the gap “between” autism and normality, where services and accommodations are difficult to obtain.

It is my hope that our society becomes more aware of the way the autism spectrum overlaps and interlinks with the human spectrum, and that the more we do so the more we will appreciate, accept and facilitate neurological differences—both those pronounced enough to be labeled “disorders” and those subtle enough to fall in the current gaps of awareness.  I know my life would have been a bit easier if both I and others were more aware of my sensory processing and social differences earlier in life.  For me, it took having three children with autism to discover how close to the autism spectrum I was and to accommodate myself accordingly.  Which is not suggest I have any horror stories—I don’t—but understanding oneself and being able to communicate that understanding to others creates a richer, more “right” life for all of us.

Somehow we need to close these gaps and stop letting people fall through into the abyss of not knowing and not being known.

Kudos to The Chicago Tribune!

  • Posted on November 25, 2009 at 2:20 PM

I saw a headline I just had to read:

Autism treatments: Risky alternative therapies have little basis in science

Alternative therapies amount to uncontrolled experimentation on children, investigation finds

The article starts with a little boy whose parents are currently involved in a bitter custody battle.  One parent, the mother, is subjecting the boy to a “complex treatment regimen” that involves the child taking many pills, being injected with vitamin B12, receiving intravenous infusions of a drug used to leach mercury and other metals from the body, as well as taking megadoses of vitamin C, a hormone and a drug that suppresses testosterone.  The father opposes these treatments.

Unfortunately, this little boy is not alone.

But after reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, the Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.

The therapies often go beyond harmless New Age folly, the investigation found. Many are unproven and risky, based on scientific research that is flawed, preliminary or misconstrued. (Tsouderos & Callahan)

And here’s where the kudos comes in.  Sure, as a parent of three children on the spectrum, I’ve heard about all of this.  I know these therapies are opportunistic bunk.  Yet, I still read articles in otherwise respectable periodicals promoting all this bunk.  And here is the Chicago Tribune devoting precious reporting time and significant space in their newspaper to debunking the bunk.  To say I’m impressed is, well, an understatement.  They just might get a subscription out of this!

Also noteworthy:  This article links to these FAQs which states, among other things, that while researchers at John Hopkins have noted neuroinflammation in their studies of autistic brains that this should not be used as a reason for treating people with autism with anti-inflammatory medications, which the researchers fear might happen.

Read this to find out more:

Autism treatment: Science hijacked to support alternative therapies

Researchers' fears about misuse of their work come true

So, I’m pleased with the reporting going on at The Chicago Tribune at the moment, which I find particularly pleasing because this newspaper seems to have close ties to the graduate school I intend to attend.

Revealing Research

  • Posted on September 26, 2009 at 12:00 PM

I admit when it came to the “autism epidemic” I took the statistics pretty much at face value.  I didn’t interpret the situation as dire, but I assumed there was a causal factor other than broadened definitions and increased awareness that supported the growing number of autism diagnoses in children.  Left Brain/Right Brain of the UK was the first source I’d seen that convincingly shed both doubt and light on those statistics and raised issues of bias that I needed to consider.

Now, research also coming out of the UK sheds further light on this very important issue.  I read this article posted in Medical News Today:

This ground-breaking study shows for the first time an estimate of how many adults are living with autism spectrum disorders (ASDs) in England. The study into the prevalence of autism spectrum disorders among adults shows that one in every hundred adults living in households has the condition - broadly the same rate as that cited for children.

The implications of this research are, in my opinion, nothing short of profound in their implications of the politics of autism.  Further relevance is revealed in these findings:

  • While 1.0 per cent of the adult population had an autism spectrum disorder, the rate for men was higher (1.8 per cent) than for women (0.2 per cent). This was in line with studies among child populations which show higher rates amongst boys.
  • People who were single were more likely to be assessed with an autism spectrum disorder than other marital statuses.
  • Among men, prevalence of an autism spectrum disorder was lower among those with a degree level qualification than among those with no qualifications.
  • Men renting their home from a social landlord were more likely than those living in other types of housing to have an autism spectrum disorder.
  • Adults with an autism spectrum disorder were no more likely to be using services for those with mental or emotional problems than the rest of the adult general population.

If I ever doubted we needed to take a serious look at how we, both in the US and internationally, approach autism this offers a never-before-seen glimpse that shows very clearly that we do.  Misinformation and assumptions having us looking for causes and solutions to this false “epidemic,” when what we really should be doing (and should have been doing all along) is using our resources to find ways to solve problems people with autism face every day.

Run for Autism

  • Posted on September 6, 2009 at 12:00 PM

I’ve seen many attempts to raise funds for autism research, most of which I’ve refused to participate in.  The only autism-related fund raising I’ve contributed to is the fund for our local respite program.  However, I’ve recently learned more about OAR (Organization for Autism Research) and I think it’s something I might be able to support.  I’m still not entirely swayed, but I’m open enough to the idea to post the following news from an e-mail sent by Michael V. Maloney, OAR’s Executive Director:

The RUN FOR AUTISM – Chicago is OAR’s largest fundraising event of the year.  This year, The Bank of America Chicago Marathon launched a fun and interactive opportunity that allows you to leave your “digital mark” on the Windy City in anticipation of the marathon on October 11th.

We invite you, your friends and family to log-on to and create a free personalized digital footprint, which includes a shoe tread, personal photo, quote, and your support for OAR. Just select “Run for Autism - Organization for Autism Research” from the charity dropdown menu and create your footprint. Be sure to save the jpeg image so you can share your footprint others, inviting them to log-on to create their own footprint and show their support OAR.

The first 50,000 people to create their footprint will earn $1 donation to charity of their choice, including OAR. You don’t have to be a RUN FOR AUTISM participant to make your mark on Chicago this fall; create your footprint today and spread the word.

Now, I’m not planning on joining the run for autism.  I’ve been to Chicago – twice.  I’ll go again, but spending $30 + (not including gas, food, or other expenses) to participate in an event just isn’t in our budget.  Especially when I’m not 100% on-board with the organization.  However, leaving a footprint sounded worthwhile.

It’s a little hokey, but it gives you the opportunity to choose from a variety of charities (including OAR, but not them exclusively) for a bank to donate money to, which seems like a good cause just about any way I look at it.  If you’re going to do this, you have to design your footprint by October 9th!

OAR’s Telemedicine Research

  • Posted on August 25, 2009 at 12:00 PM

I had the very special pleasure of talking to Dr. Peter Gerhardt, President & Chair of the Scientific Council of OAR (Organization for Autism Research), for an article that is still under consideration.  In our conversation he mentioned OAR-funded research on Telemedicine.  So, when this popped up in my e-mail box, I had to check it out.

“The two-year project will measure the effect of telemedicine support on parents’ ability to provide PRT to improve functional verbal communication in their children with ASD.”  It compares parent treatment with and without telemedicine support after the same initial training program.  If telemedicine support proves effective it may provide a cost-effective means of helping families provide effective learning environments for their autistic children that facilitate the development of readily recognized social communication skills.  In many areas, cost and shortage of services result in long waiting lists and limited service options, therefore if this procedure proves effective it will increase access to timely treatment options.

As a side note:  “PRT is an evidence-based model that uses both a developmental approach and the science of applied behavior analysis (ABA) procedures to target areas that underlie the core symptoms of autism, including impairments in social interaction, communications, and repetitive/ restrictive behaviors.”  The value of the “evidence-based model” may seem questionable after reading Michelle’s post.  However, OAR states:  “Among the myriad interventions that claim some degree of effectiveness with individuals with autism, interventions based upon the principles of applied behavior analysis (ABA) have the most comprehensive and sophisticated research base by far.”  That, admittedly, offers little reassurance in the face Michelle’s report.

Health Effects of Activity Limitations

  • Posted on August 17, 2009 at 12:00 PM

Dr. Whitney P. Witt recently published a paper, “The Impact of Childhood Activity Limitations on Parental Health, Mental Health, and Workdays Lost in the United States,” concerning her research determining whether children with activity limitations (i.e., children whose activities are limited in comparison to their age-appropriate peers) affects the physical and mental health of parents.  Not surprising, Dr. Witt found, “Parents of children with any activity limitation were significantly more likely to experience subsequent poor health and mental health.”  If the activity limitations were on-going and/or multiple children lived with activity limitations in the same family, then the odds of poor mental health were significantly increased.

The results are not surprising.  She concludes:  “These findings indicate that child health can importantly influence the health and work behavior of the family and that health care providers should consider a family-centered approach to care.”

I don’t disagree.  Family-centered health care is important.  But, and this is a BIG but, there is a time-tested method of assisting these families.  Witt touches on that as well:  “Employers should consider offering respite care or additional support services for families whose children have activity limitations. This could enable the parents to miss less work and may improve workplace productivity.”

Neither my husband nor I have ever worked for an employer that offered such a benefit, though our work history has suffered due to the special needs of our children.  However, Wisconsin has an excellent (read here: expensive!) autism program that provides respite care to our family.  It is a sanity-saver!  Respite care is vital when you’re raising children with special needs.  Unfortunately, it seems funds for these programs are too few, spread too thin, and too limited to benefit as many people as need it.  For example, though these services are widely available to Wisconsin families with children with autism, families with children experiencing other special needs and activity limitations do not share in these same benefits.

There is a cost to raising children with special needs.  The cost is real, whether it’s spent preventatively or on treatment.  Our families are worth the cost.  Our productivity is worth the cost.  Our health is worth the cost.

“There are substantial health, mental health, and work implications for parents caring for children with activity limitations.  Addressing the needs of these parents could help improve the health and well-being of the whole family,” Dr. Witt said.  And she’s right.  It would also make for better employees, better citizens, and a better nation.