Many autism and Asperger’s parents groups in Arizona are trying to get a bill out of committee that would require insurance companies to provide insurance for autism, Asperger’s Syndrome, PDD-NOS and other spectrum conditions.  Arizona would not be the first state requiring such coverage but would most definitely be one of only a handful of state’s mandating this.  This is a very important topic for me.  In Arizona, only children with a diagnosis of “autistic disorder” qualify for services past the age of six.  What this means, for me, is that any therapy needed for my son comes out of my pocket.  At sessions that can average $100/hour, the money adds up quickly.  If this bill were to pass then a huge financial burden would be lifted from my shoulders, and from the shoulders of many other parents in Arizona.

A candlelight vigil to support this autism insurance bill will be held on January 29, 2008 at the Arizona State Capitol.  Organizers are hoping that with a large turnout legislators will see just how many people are affected by autism spectrum conditions in the state of Arizona.  I will be sure to post updates on the topic as they become available.

This year, my husband’s company offerend an insurance plan that would provide therapy for children with developmental disorders through the age of six.  I am glad for their forward-thinking but unfortunately for us my son is already six.  Had this plan been available a year ago we likely could have saved thousands upon thousands of dollars. 

I first heard the term dysgraphia a few months ago when my mother mentioned it to me.  She is a public school educator and somewhere during her day she heard about dysgraphia and immediately thought of my son.  I looked a little bit at it and thought ‘maybe, maybe-not’ and filed it away for future reference.  Every now and then it would come up and I’d read more about it and think again ‘maybe, maybe-not’.  After a report from Alexander’s teacher today I’m thinking ‘well, maybe.’  As I’ve mentioned previously he is learning above grade level in all subjects except for writing.  His 4th quarter progress report came home and in the writing section it says this “When writing, Alex usually writes with lower case letters and ends his sentences with a period.  However, the wording of his sentences often does not make sense.  Please help Alex focus on what he wants to say and then follow through with the correct sequence of words.”  Hmm…definitely food for thought.

So what, exactly, is dysgraphia?  Dysgraphia is officially a learning disability that affects a person’s writing abilities.  It can manifest in many ways including (but not limited to) trouble putting thoughts on paper, poor handwriting, and problems with spelling.  The National Center for Learning Disabilities has listed the following as warning signs for dysgraphia:

• Tight, awkward pencil grip and body position

• Illegible handwriting

• Avoiding writing or drawing tasks

• Tiring quickly while writing

• Saying words out loud while writing

• Unfinished or omitted words in sentences

• Difficulty organizing thoughts on paper

• Difficulty with syntax structure and grammar

• Large gap between written ideas and understanding demonstrated through speech.

So you can see while I am still only in the ‘maybe’ stage - its hard to measure some of these concepts in a kindergartener.  However as his writing is progressing we are seeing some of these issues manifest.  The ones that pertain to Alexander are pencil grip/posture, avoiding writing/drawing tasks, tiring quickly while writing, saying words out loud while writing, unfinished or omitted words in sentences, and large gap between written ideas and understanding demonstrated through speech.  So right now its hard to determine what would be considered age-appropriate and what would be considered a deficiency.

From the research I’ve done on dysgraphia it looks like an occupational therapist is a good place to start with regards to diagnosing and treating dysgraphia.  I have put a call in to Alexander’s OT to see if she has any experience with it - I figure we’re already seeing her we might as well get her take on the matter if she has knowledge on the subject.  Evidently there are several tests that can aid a professional in determining whether a child has dysgraphia including the Slingerland Screening Tests for Identifying Children with Specific Language Disability and the Test of Early Written Language .

So how does dysgraphia relate to Asperger’s Syndrome?  Dysgraphia is one of the conditions that is seen at an increased rate among children with Asperger’s Syndrome.  Basically its a not-so-uncommon comorbidity.  Is it a comorbidity for Alexander?  Time will only tell.

The CDC and the Interdisciplinary Council on Developmental and Learning Disorders has released new guidelines for identifying children at risk for Autism Spectrum Disorders and other developmental delays.  From the press release dated today, 4/23/07:

Leading experts on child development today presented a new framework for identifying children at risk of Autism Spectrum Disorders (ASD) and other developmental challenges, saying that current guidelines fail to identify many children who need and would benefit from early intervention.

The framework is contained in a report by a special working group formed by the Centers for Disease Control (CDC) and the Interdisciplinary Council on Developmental Learning Disorders (ICDL), co-chaired by Dr. José Cordero, former Director of the CDC’s National Center on Birth Defects and Developmental Disabilities and currently Dean of the School of Public Health of the University of Puerto Rico, and Dr. Stanley Greenspan, chair of the ICDL.

We believe this framework improves our ability to identify infants, young children, and families at risk and to organize truly comprehensive, developmentally-based intervention efforts.
The framework presents newly formulated indicators to identify at-risk children in the first and second years of life, components for a comprehensive evaluation of infants and children determined to be at risk, and essential elements of a successful early intervention program for ASD and other developmental disorders.

The authors say the new rubric casts a wider net than current common practice in an effort to identify all children at risk of developmental disabilities.

“Children identified with developmental or behavioral disabilities earlier have a better chance of reaching their full potential,” said Dr. Cordero. “We believe this framework improves our ability to identify infants, young children, and families at risk and to organize truly comprehensive, developmentally-based intervention efforts.”

The CDC-ICDL framework is based on current understanding of healthy developmental patterns and is designed to detect all possible deviations from those patterns. It uses risk indicators designed to detect a lack of mastery of age-expected emotional, social, and cognitive milestones during a child’s first 2 years of life.

The entire press release can be viewed here: New Guidelines Promise Earlier Identification of Autism - CDC/ICDL Working Group Releases New Report during Autism Awareness Month and the report can be viewed on the ICDL website: CDC/ICDL Collaboration Report On A Framework for Early Identification and Preventive Intervention of Emotional and Developmental Challenges

Today’s title is in quotes because it is just that - a quote.  This is what I was told today while changing my daughter’s diaper at a Target store.  My daughter is 3.5 and a little tall for her age but between the autism and the sensory processing disorder is nowhere near ready for potty training/learning.  We were at therapy and she had her turn and my son was a few minutes into his when I noticed a foul odor emanating from her bottom region.  I checked her diaper and sure enough, she was the source of the odor.  I told the therapist I needed to go change her diaper and checked in with my son to make sure he was fine without me, he said “sure.”  We get down to the car and I realize I have my old car and not my new car which means I have no wipes.  Target is 1/2 mile down the road and we are only ten minutes into a 50 minute therapy session so we head off to Target.  After finding the wipes we head into the bathroom.  I carefully release the latch on the changing table, line it with paper towels, and lob my 3.5 year old daughter up there.  Mind you she’s as big as the table but where else am I going to change her? 

A mother and a daughter were using the restroom and when the daughter came out (about Ava’s age) she commented to her mom about the baby getting a diaper change.  Ava calls any kid a baby so I thought it was cute.  Then the mom opened her mouth and out came “That’s no baby, she should use the potty like you.”  Oh great, its one of *those* moments.  I thought that was the end of it but evidently the mom felt the need to educate me about parenting my daughter and looked at me and said “she should be potty trained.”  Yes, this was a complete stranger.  Today has been a rough day and usually I have something constructive to say but no not this time, all she got from me was a “shut your cakehole.”  Wow, look at my maturity just shine through! 

Quite frankly I’m tired of the comments I’ve been getting the past week or so.  People aren’t even being well-intentioned about their comments, they are being downright rude.  I am tired of saying “she has autism” and then going on to explain that yes she really does have autism even though she smiles and is verbal.  The whole “she has autism” comment just opens up a new conversation line for me that quite frankly I’m tired of discussing.  I am not embarassed by the fact that my daughter has autism but I am just tired of judgmental people saying things that are really absolutely none of their business.

 To piggy back on the whole dreaded autism tantrum post; if you see a child doing something that you think isn’t appropriate for their age please pause for a moment and reserve judgment.  There are often-times unforseen needs that a child may have leading to such behavior.

So here I am at the end of a nice holiday and I open up one of my favorite mommy message boards and I see a post questioning the link between autism and terbutaline.  Great, I’m just over my mommy guilt wondering if and how I may have caused my daughter’s autism and I see a post like this.  When I was pregnant with my daughter I suffered from preterm labor; my cervix was dilated and thinning at 26 weeks.  I was given steroid shots to help mature her lungs and terbutaline and mangesium sulfate to stop the labor; the labor stopped.  I was then put on bedrest for the next 10 weeks and took terbutaline daily.  My sister, who also experienced preterm labor, was on a terbutaline pump (intravenous via her leg) for a few months of her pregnancy as well.  My nephew has experienced no developmental delays.  Ava, on the other hand, has been delayed pretty much from the start.

 I certainly don’t have the magic answer with regards to the origins of autism but seeing something like this certainly doesn’t give me a warm fuzzy feeling.  Many of the mothers who responded to the post said that they, too, were on terbutaline and now feel guilty about not researching it.  The original poster shared a few studies: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16417856&query_hl=2&itool=pubmed_DocSum and http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17400887&query_hl=25&itool=pubmed_docsum .  One is from 2005 and another from last month.  I decided to poke around the web a bit and found this site:  Terbutaline Lawyers.  The domain was registered in 2004 so the suggested link between terbutaline and developmental delays/autism goes back at least that far.  I was trying to find the origin of the studies first suggesting this link but was unsuccessful. I am curious how far back this goes. The poster on my mommy board was curious why this link wasn’t discussed in the media as a possible environmental trigger. My guess, without regards to whether or not I support this theory, is that not as many women are affected by the terbutaline plus autism combination as are by vaccinations and autism.  I am just using this as an example as it seems that the vaccine/autism link is the most popular and therefore widely recognized theory.

Whatever the case may be, my daughter is my daughter and I take each day a step at a time. Each night when I go to bed I look forward to what the next day will bring me. I have two wonderful children that I am very thankful for.

I ran across two interesting news bits today that I wanted to share.

Ped Med: Timing key to treating autism
An excerpt:

When it comes to treating autism, timing is everything, or at least a major
part, specialists say. Children with the neurodevelopmental disorder must be
taught what comes naturally to their peers, and while the brain is still pliable
enough to absorb the lesson, experts said. Because the immature nervous system
has a great deal of plasticity, many neuroscientists think early treatment may
enrich neural growth.

Parents Should Look for Autism Signs Early
An excerpt:

Doctors at Maryland’s Kennedy Krieger Institute, one of the country’s
leading autism centers, say they can now identify symptoms in children
younger than ever before.

These two articles are definitely related and of extreme importance in my opinion. The earlier autism is diagnosed, the earlier interventions specific to autism can start, and the chances of a better outcome. My daughter did not benefit from any Early Intervention services and that is partially my fault and partially the family doctor’s fault. The family doctor admittedly didn’t know much about developmental issues and felt that she was fine and would eventually catch up. It is my fault because I switched from a pediatric practice to a family practice early on in my child’s lives. I have since switched back to a pediatric practice for my children.

My daughter didn’t start receiving services until she was 2 years and 10 months of age and started at a developmental preschool run through the local school district. She has come a long way in the past five months and is starting to communicate quite well for which we are all thankful. It makes me wonder where she’d be had we started early intervention at 18 months or two years of age. I can’t get back that lost time so I don’t spend much time dwelling on it but everyone now and then I do think ‘what if’?

When I first started down the road to an autism diagnosis I was researching developmental delays. Autism is a Pervasive Development Disorder (PDD) so developmental delays are par for the course. This was definitely the case with my daughter. Once we had her professionally assessed she was basically delayed across the board; again not uncommon with children who have autism spectrum disorders. Here are some of the links that I found most beneficial while figuring out where my daughter stood with regards to developmental milestones.

• Developmental Delay Resources - An absolute fantastic site, a wealth of knowledge is available on topics ranging from autism, to ADHD, to sensory issues; my #1 favorite link on developmental delays
• American Academy of Pediatrics Developmental Stages - A variety of developmental information at a variety of ages from the ultimate source for pediatric knowledge
• First Signs - Lists some early red flags or warning signs for developmental delays, including autism, that you may see in your child
• IVillage.com’s Developmental Delays Message Board - A wonderful resource for me when I was first starting out; being able to talk to other parents who have been down your path is priceless

Your pediatrician should be following your child’s development and should be open to conversation about any concerns you may have. If they feel that it is necessary they may refer you to an Early Intervention service in your area for a full assessment. Early intervention services vary from state-to-state within the United States and also vastly vary depending on the country that you are in. Your pediatrician should have contact information available for you.