Federal Funding for Autism Research

3 04 2010

One in every 110 children has autism. One in 70 boys is affected. There are almost 750,000 children in the United States who test somewhere on the autism spectrum.

In FY 2008, Federal spending on autism research was just $177 Million and is expected to increase to $282 million in FY09 due to $89 million in one-time stimulus funds…   That’s less than $40.00 per person with autism in the United States. 

Federal Funding for Defense Research in FY2009: $6,692 Million

“During his campaign, President Obama committed to $1 billion of annual federal spending on autism by 2012. In October, he identified autism as one of his administration’s top three public health priorities. This new prevalence data must compel Congress to take action to fulfill the President’s promise in the upcoming FY 2011 budget process,” said Mark Roithmayr, President of Autism Speaks.

It’s time to write our elected officials… and hold them to their promise. http://www.usa.gov/Contact/Elected.shtml


J has Autism

19 02 2008

The fact that J has Autism doesn’t define him but it is part of his make-up.  He’s also a great reader, a handsome fella and the best jumper in his class.  He has Autism.

We can choose to say that it’s a disability or say that he is “differently able.” What we call it won’t change the fact that he has Autism. We can call folks who don’t have Autism “neuro-typical” but, it still doesn’t change the fact that J has Autism… we can argue about what causes it– Environment, Mercury, Heredity… but, that’s not going to change his diagnosis.

We can choose to be a community divided and spend our time fighting about causes or whether or not our children need to be “cured”… but, that’s not going to help our kids.

The nature of Autism makes it impossible to have a standardized way of helping these kids (some people object to the word “treatment”). It’s a spectrum. So, our time– the time of those who love and know these children the most– needs to be spent helping them function as contributing members of society, independent, confident and happy adults. I don’t know if he needs to be cured or if he just needs to learn to overcome his challenges.

What I do know is that I’m not going to live forever and it’s my job to prepare him for life after me. If he’s going to need a schedule in order to stay grounded– it’s my job to teach him how to use a calendar, a clock and a note pad. If he is always going to eat white food– it’s my job to teach him how to order off the menu. Hitting is not ok. Tom and Jerry are not real. It is important to brush your teeth and you can’t leave the house in your pajamas. That’s my job…

I feel strongly that better treatments need to be found, a cause needs to be identified beyond shadow of a doubt and if there can be a magic pill that causes his world make sense it needs to be developed. But, I’m not a Doctor, Scientists or Therapist so, it’s not up to me… I can write letters and bug politicians. I can donate to research. But, I’m not going to spend my time speculating about causes and cures when my son needs that time for himself.

So, I’ll say it out loud:  J has Autism. 
He isn’t my “cause”– he’s my son.

Tuesday Debate–Please Help Me Ask About Autism

14 01 2008

I’ve been trying to get a question onto the MSNBC form and keep getting an error message… Could you help me ask the following question– or something like it:

I am an undecided voter. The issues that matter the most to me are the economy and Autism.

What will you do for the middle class insured who can not afford the “extra” services (therapy, equipment) our autistic children need to succeed, can not qualify for assistance because we fall above the income cut-off, and who’s insurance does not cover these needed “extras”?

Here is the link to the MSNBC form http://www.msnbc.msn.com/id/22574335/

From the MSNBC Website: “Watch the Jan. 15th 2008 Democratic Presidential Candidates’ Debate — the first debate since the New Hampshire primaries — on MSNBC TV and MSNBC.com to see if your question is asked.

Brian Williams will be the moderator and he will be joined by Tim Russert.   Natalie Morales will ask the candidates your questions.

NBC News, the U.S. Hispanic Chamber of Commerce, 100 Black Men of America, IMPACTO, the African American Democratic Leadership Council and the College of Southern Nevada will co-sponsor the debate among the Democratic candidates. The debate will take place at the Cashman Center in Las Vegas, Nev., from 6-8 p.m. PST.”

Thanks so much! Please let me know if you were able to get through…. thanks!

Hey! Candidates– watch this before you finalize your healthcare plans!

12 01 2008


Ten Things Every Child With Autism Wishes You Knew- Part 2; My Sensory Perceptions Are Disordered

12 01 2008

Here is part two of a ten part series from the new book I’m reading: Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. The following is an excerpt from the article by the same name:

My sensory perceptions are disordered.  This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me.  The very environment in which I have to live often seems hostile.  I may appear withdrawn or belligerent to you but I am really just trying to defend myself.  Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute.  Dozens of people are talking at once.  The loud speaker booms today’s special.  Muzak whines from the sound system.  Cash registers beep and cough, a coffee grinder is chugging.  The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums.  My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive.  The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out; I’m too nauseous.

 Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated.  The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing.  There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion.  All this affects my vestibular sense, and now I can’t even tell where my body is in space. In the book she talks about feeling like you’re always on a roller coaster– fun for three minutes but can you imagine going through your daily routine on a roller coaster? Making coffee alone would be enough to ruin your day…

In light of Sensory Disintegration– I am so proud of my J! He handles the off-kilter-ness of his world so well!  I’d be hideous!!  (And, my husband who moans for hours over a hangnail… yikes! What would he be like?) So, J’s outbursts aren’t rebellion, manipulation or bratty-ness– they are genuine cries for help– “Get me out of here”, “End my suffering!”

There are lots of different manifestations– Hyper-sensitive (Clothes hurt, the washing machine is too loud, the light is too bright…) and Hypo-sensitive (Yearns for deep pressure, louder, brighter, harder). J is Hypo-sensitive. He likes walking barefoot in gravel and loves to wrestle. He also is a recovering headbanger.  Identify what your child is– and work with it…

I believe that J will be a productive part of society and this book– the information in it– is a stepping stone. I highly recommend it to all who live with Autism– parents, teachers, grandparents, ministers, Sunday school teachers, lifeguards at the Y… It is up to us– the guardian’s of these kids to provide the people in their lives with this information.

An article by the same name is available on-line.

Ten Things Every Child With Autism Wishes You Knew– Part 1; I am a Child

11 01 2008

I’m reading a new book– Ten Things Every Child With Autism Wishes You Knewby Ellen Notbohm. The following is from her article by the same name:

I am first and foremost a child —  a child with autism.  I am not primarily “autistic.”  My autism is only one aspect of my total character.  It does not define me as a person.  Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?  As an adult, you have some control over how you define yourself.  If you want to single out a single characteristic, you can make that known.  As a child, I am still unfolding.  Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low.  And if I get a sense that you don’t think I “can do it,”  my natural response will be:  Why try?

In the First Chapter she talks about predispositions we have towards labels.  Last weekend my son got a new Sunday School teacher. She is a lovely older lady who really wants to help J. She sat in on his old teacher’s last class with him and afterwards commented to me that she was really surprised by how well J did. I sang his praises– he’s a great reader, he’s really sweet and funny, etc. After reading the first chapter of this new book it occurs to me that she had a set of stereotypes she was anticipating she’d have to deal with.  (Bless her willingness to teach him anyway!) Because of her willingness to tackle this class and her predisposed notions, she will be able to learn from him. He will make her life richer.

I know that I sometimes clarify– “you know J is autistic”– I don’t introduce him as autistic but I do use it as a crutch to explain why he is how he is.  I need to give him more credit and remember that he is first and foremost a child– a georgeous, funny, sweet child!  I am truly blessed by Autism– strange, huh? J is who he is because of Autism and I am so lucky to be his mom!

I certainly don’t mean to be a Pollyanna– there are challenges– REAL challenges but, I wouldn’t trade him in… He is working hard to overcome his challenges, he tries– he’s a good boy who has to deal with things that I can’t relate to and in-spite of it; he is cheerful and persistent.  My son will overcome his speech and social issues. He will find a place where he will be a productive member of society. He will– and, I’ll help him.

So What Causes Autism?

10 01 2008

With recent reports indicating that Mercury isn’t linked to Autism– be it true or not– I’m grasping for causes that don’t point back to me.  Did my choices– environment, foods, spouse– cause my son to have Autism?

There are a number of theories– food allergies (wheat gluten, diary), genetic predisposition combined with environment are among the most popular besides Mercury. Could these children be our canaries? Is Autism caused by the environment?

A few years ago my husband read an article that claimed a link between older fathers and Autism. He was distraught for weeks blaming himself for the challenges our son faces. I haven’t heard this theory apart from that one article.

I know it’s important to find out what causes Autism so that future cases can be avoided but as I’m dealing with the disorder on a day to day basis, I must confess that I don’t know if I really want to know what causes it… what if it was something I did or didn’t do? Could I live with that guilt?  A long time ago– I believe in the 60s it was theorized that Autism was caused by “refrigerator mothers”. Can you imagine believing that something that you did or didn’t do caused your child to face these challenges?

An article I read recently looked at several causes for Autism and concluded, wisely, that those who live with this disorder should spend their time looking for treatments and let the medical profession figure out what causes it. 

I guess I need to get off the kick and spend my energy trying to figure out what works for J. He is an individual and not everything that works for others will work for him — visa-versa. He is my priority and he deserves my time.