As my year as NASFAA’s National Chair winds down I am taking this opportunity to thank all of you who participated in a charity event at your conferences this year.  It is quite inspiring that NASFAA members are supporting a wide variety of charities around our states and regions.  From the Iowa Association (IASFAA) who held a year-long focus on autism, to SASFAA, MASFAA, SWASFAA, and other state (Colorado, Oklahoma, Michigan and others) and regional associations, I applaud your efforts.  I don’t have a final count of the total dollars raised or the number of educational awareness programs that occurred throughout this year, but I can tell you that at least 15 autism information events took place and over $12,000 was raised for local autism associations and other local charities. I believe that this is the first time that a charity focus was instituted on a national basis by a NASFAA National Chair.  I’m hopeful that going forward others in this position will continue to pursue raising awareness for the many deserving charities out there that are dear to their hearts.

I thought that you would be interested in hearing from one of our own - Ted Malone from the University of Alaska in Anchorage.  Ted’s statement concerns family’s life with his son Evan who has Asperger’s Syndrome.   Hopefully it will give you insight into how wonderful these special children, young adults and adults are.  My five-year-old grandson Cale, who is autistic and moved me to start this campaign, continues to go through occupational and speech therapies that are improving his social skills, his speech and his mechanical skills.  Thanks to all of you who have given me your prayers and support for this effort this year.

I appreciate all you have done.  At last summer’s NASFAA Conference I asked the NASFAA membership to “Cowboy Up!” this year.   “Boy Howdy!”  You have done so.  Financial aid folks are the best!

I look forward to seeing you in San Antonio for NASFAA’s Annual Conference next month where you can share with me personally your efforts throughout the year.

Ted’s Statement:

Last spring when I heard Dave Gruen’s plan to have Autism Speaks as the NASFAA charity for the 2009 conference, I was very excited.  Autism is a debilitating brain condition that affects about 1 in 150 children.  It is very near and dear to my heart because my Son is one of those children.

Most people do not recognize that Evan is on the Autism spectrum, because he looks very “normal.”  Autism is a spectrum disorder, because there is a wide range of manifestations and levels of disability.  Not all folks on the spectrum are disabled to the level of Raymond Babbitt of The Rain Man.  Evan is diagnosed with Asperger’s Syndrome, a very mild form of Autism.    Evan is a typical 17 year-old boy in many respects.  He is growing like a weed, hungry all the time, is too shy to talk to girls and really into electronic gizmos.   However, Evan has always marched to the beat of a different drummer.

He reached developmental milestones in very unique ways.  We never saw him learn to walk; he just did it at 18 months.  He did not babble and baby talk the way most children did, but at age two he just started speaking in complete sentences.  My wife, Tamzin, started to suspect Evan had a problem around the age 4.  She questioned whether we should start him in Kindergarten or hold him back.  We started him and we were called to the principal’s office within the first two weeks.  Evan did not do things the way he was supposed to.

We moved to Washington during his kindergarten year and decided not to restart him until the following fall.  His school there was wonderful in treating Evan as an individual.  There were still issues, but the principal did not over react and most of his teachers allowed him freedom to be different.  If he stood in the back while other’s sat on the floor, it was not such a big deal.

We began to notice increased isolation on his part.  He could fixate on his favorite things to an extent that seemed unreal.  Dialog that runs through most people’s minds flowed freely from his lips.  But, we were able to live with his eccentricities and his school accommodated his behavior which was never malicious just off beat.

After a couple years in Washington, we moved to Alaska which turned out to be a change that pushed Evan a bit more than he could handle. Evan started school in the fall and where his prior school had been laid back and worked within his quirks, his new one was hard line on anything other than what they wanted.  The suspensions soon followed.  We even had one out of school suspension that resulted from Evan’s refusal to sign a piece of paper saying he lost a book, that he knew was at home.  The stress on Evan began to manifest new behaviors, and we took him to a psychiatrist.  The first diagnosis was that Evan was suffering from depression.  They gave him an anti-depressant and the results were horrible.  It sent him into a manic phase that was uncontrollable.  He did not sleep for several days and we could not send him to school because he could not stop talking.

Step 2 was a full battery of tests which discovered that Evan had holes in some of his areas of perception.  Evan was missing some of the self-regulatory items that most people have.  This was when we first learned about Asperger Syndrome.  There is no cure for this situation.  Evan has had to learn to manually do what most do automatically.  We assumed that this diagnosis would help the school deal with him for effectively.  As it turned out that was not the case.  You see, even people who should be educated about developmental disabilities are often at a loss to deal with some of his manifestations.  While I am certain no child in a wheel chair would ever be disciplined for refusing to obey an instruction to walk, Evan has been in trouble many times for willful disobedience of instructions that at the time he was no more able to obey than a wheel chair bound child could obey the command to walk.

I cannot say that we are perfect parents and are never frustrated by his behavior.  We often wonder if he will ever be able to live on his own.  We have however learned that this is best done with a team of advocates.  We have had training from the National Alliance for Mental Illness (NAMI) on how to be a family member to someone with invisible disabilities.  We have participated in group therapy with other parents of spectrum children.  Evan has participated in groups of boys his age learning how to fake eye contact and other social graces that are beyond their instincts.  We have tried several different schooling methods from Montessori to home school.  He is currently in a small charter school that does not have sports teams, but does have a robotics team.  As you might guess a bit of geekiness is quite the norm there, so Evan does not stand out so much.  I am not sure what the future holds for my son or others like him.  Many people on the spectrum contribute to society in very meaningful ways.  I know more people need to be aware of this condition and learn to be more tolerant of mental illness in general.

There is an excellent book that can give you insight into the world of autism.  It is called The Curious Incident of the Dog in the Night-Time by Mark Haddon.  It tells a sort of murder mystery from the point of view of an Autistic teen age boy who decides to solve the case.  It gave me understanding that many textbooks never could.

The fall travel season for your National Chair has begun. This past week I attended the Colorado Association of Financial Aid Administrators (CAFAA) fall conference in Steamboat Springs. The two-hour drive over from Laramie was spectacular – the aspen trees were in their full golden glory. Such was the start of an exceptional experience. The CAFAA folks held a silent auction throughout the conference to raise funds for the Yampa Valley Autism Program (YVAP). At the opening session of the conference, James Broscheit, the CAFAA President allowed LuEtta Loeber, the Executive Director of the YVAP, and me an opportunity to discuss autism. I am very excited to say that CAFAA ‘Cowboy-ed Up!’ and raised $1,250 that will be used to assist autistic children in the Steamboat Springs area (the Yampa River valley) with approximately 40 hours of therapy.

Soon after my election last spring, I contacted each of the state and regional presidents indicating that I wanted to use my ‘bully pulpit’ to educate and raise awareness of autism. I reiterated my intent again at the NASFAA conference. At next July’s NASFAA conference in San Antonio, there will be an autism fundraising event. In addition, NASFAA is in the process of bringing a nationally recognized champion of the autism battles to speak at the National Conference.

I challenged each of the state and regional associations to join with me and consider making autism the focus of any charity event they may be considering for their conferences. I am very pleased to say that CAFAA was among the first to accept my challenge and I couldn’t be more pleased and thankful with their outpouring of support – both emotionally and financially.

As you may be aware, my interest in autism is very personal. My 4-year old grandson, Cale, is autistic. I now know how true it is that until something hits you where you live, you wonder how you could have ever ignored it. Such is the case with autism. Until Cale was diagnosed, I was under the impression that autism was rare. I was unaware that this disorder affects one in every 150 children being born today. Or, that boys are nearly five times more likely than girls to be diagnosed as autistic, one in every 94. After learning about Cale’s diagnosis I wanted to learn more. At that time Jenny McCarthy’s book, Louder Than Words, concerning her autistic son, Evan, became popular. I encourage any of you wishing to learn more about autism to read the book. It’s an eye opener.

So, all of you take notice. The gauntlet has been thrown down. Help me in getting your state and regional associations’ conferences to get involved and join with me in raising funds for this growing issue. Let’s see if your association can meet or exceed the enthusiasm and generosity displayed by the fine members of CAFAA. Their acts are truly ‘Louder Than Words’.