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Maternal Stress

  • Posted on November 13, 2009 at 11:53 AM

According to a news brief: “the daily physiological and psychological toll on mothers of adolescents and adults with autism is documented, revealing patterns of chronic stress, fatigue, work interruptions and a significantly greater investment of time in caregiving than mothers of children without disabilities.”  The study cited revealed “physiological residue of daily stress” in the form of significantly lower cortisol levels.  According to this brief of the study results, the primary distinction they looked for within the population of mothers with autistic children was “a history of elevated behavior problems.”

While I certainly recognize why this distinction would be appropriate from a research stand-point, I propose an equally important distinction would be to consider parental response.  After all, behavioral patterns of the children are not within the parent’s control, but the behavioral response of the mother is within her own control.  The news brief concluded with this statement from researcher, Leann Smith: “We need to find more ways to be supportive of these families.”  I do not disagree, but perhaps there is something more immediate that parents themselves can do for their own health and well-being.

See I have a hypothesis: mothers who accept autism will have more healthy stress levels and less stress-related health risks than mothers who are constantly fighting against autism.

The key thing for me is this:  “Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress,” (emphasis added).  Considering that many mothers who are traumatized by their child’s autism use language similar to that used in warfare – like “fighting” and “battle” – is it really surprising that they would have profiles similar to combat soldiers?  They are combat soldiers—they are waging a war against autism.  Think of the “I Am Autism” video.  That video used the language of war, not unlike the language used when describing terrorism that happens in one’s home country.

As parents, we can choose to bring stress upon ourselves by waging a war against autism, embracing the psychological risk-factors of a soldier’s lifestyle in the process.  Or, we can choose to be parents, not soldiers, and simply raise our children.  Personally, I believe the latter is the better choice, for our own sake and for the sake of our children.  I hope they continue this line of research and add other factors to see how parental responses to autism affect the outcomes for those parents.

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.

Aspitude!

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

I’ve gotten so caught up in the many tasks I’m obliged to do, and watching Season 1 of Fringe on DVD, that I forgot I was supposed to be seeking out new and familiar blogs.  So, I went looking today and found quite a few “new to me” blogs and wanted to share this one with you.

Elesia of Aspitude! is a woman with Asperger’s who is also a Research Assistant for Academic Autistic Spectrum Partnership In Research and Education (AASPIRE).  She recently wrote a post called The Fingerprint of Autism that reminds people that each person on the autistic spectrum is a unique individual.  As obvious as that seems to me, it really is worth saying, because there are people who just don’t get it.

Besides, there’s a really cool picture of a blue butterfly!  What can I say, I appreciate pretty things. :-)

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 www.chicagomarathon.com/footprint 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.