What is Arthur like?
Arthur Davis Conroy is a five-year-old boy with big blue eyes, sandy red hair, and
the longest eye lashes you will ever see. Arthur was diagnosed with autism in
November of 2001 at age 2.  If you know Arthur, you’ve discovered that he has a
kind heart, a sweet gentle presence (most of the time) and a quiet little voice he
uses occasionally. Arthur has a limited vocabulary. He can identify hundreds of
nouns but is unable to hold a conversation due to his limited comprehension and
his limited ability to use words. Arthur works hard at school, at his in-home program
and with his family. We are seeing progress. Arthur is a slow and steady learner.
He’s learned important self-help skills (like hand washing, the 1’s & 2’s of using the
bathroom, using a fork, brushing teeth, getting dressed). He’s improved his ability
to follow simple directions, he can write his name, he is good at matching, and the
boy loves numbers and letters.

Over the last 3 years Arthur has attended school and consistently received 15-25
hours of in-home intensive therapy to improve his ability to reach out to others,
increase comprehension, express himself verbally or with pictures, learn play skills,
share attention with peers and adults, and enjoy life outside his own mind. Which
by the way, appears to be a wonderful place. Arthur is generally a very happy and
content person. Because communication is so difficult for autistic people, sometimes
they can become very frustrated with the challenges of not understanding and not
being understood.

Arthur enjoys swimming, playing in the backyard, jumping on his trampoline, riding
the bus, visiting the Seattle Center, watching videos—especially Charlie Brown or
Hamtaro the hamster. If Arthur could do one thing all the time it would be to play
on the computer. From academic software to silly games he spends much of his time
navigating through the inner workings and paths of each program. He doesn’t
always play the games correctly but finds great enjoyment in the cause and effect
nature of computers. His brain is a sponge for content. You often hear Arthur
reciting entire chunks of knowledge (verbatim) gained from either TV or computer
games. “Let’s go to jungle land to see the monkeys eat bananas.”  Or my personal
favorite, “The great pumpkin rises from the pumpkin patch and brings treats to
all the children of the world.”
 
School
Arthur is currently a preschooler the Experimental Education Unit at the University
of Washington. The EEU is a unique 0-Kindergarten public school. Special needs
children are integrated, or mixed, with typically developing students. The EEU is a
national model of special education and a notable training facility for teachers
working with autistic children in Washington and throughout the world.  In addition
to preschool, Arthur attends a program called Project DATA (developmentally
appropriate treatment/therapy for autism). It began as a pilot project and is now a
mainstay at the EEU. The DATA model has been duplicated within some public
schools in order to provide autistic children with early intervention as an extended
day option. Public school budgets are tight and this program is facing potential
cutbacks. I can only imagine how upsetting it must be for parents when programs
for their autistic children are eliminated. Arthur is very fortunate to attend this
school. We are thankful and grateful to the EEU for everything they’ve given
Arthur since he started there almost 4 years ago. The teachers, staff and facility
are exceptional. Remember how Sesame Street made you feel as a kid? Same thing
here—only better. Every child is honored, cared for, challenged, and made to feel
genuinely special. Every special needs kid deserves a school like this. Arthur will
attend Kindergarten at the EEU in 2005-6. Then he’s off to the unknown.
Placement into the public k-6 schools is based on a “least restrictive” environment
model. Arthur’s  progress is important next year at the EEU. After EEU
Kindergarten, he will be placed in the public schools in either an integrated program
(special needs with typically developing peers) or a self-contained classroom (100%
special needs). We trust Arthur will get what he needs—and we are willing to do
what it takes to ensure he receives the proper placement based on his abilities,
strengths, challenges and potential. If you want to learn more about the EEU,
check out: http://depts.washington.edu/eeuweb
 
In-home therapy
Arthur receives 10-15 hours of in-home therapy each week. Our behavioral therapist
consultant is Bonnie McBride from the UW’s Experimental Education Unit and we
hired 3 therapists to work with Arthur this year: Heather Donaldson, Jon Arnett,
and Trinette Terry. Three wonderful people who come into Arthur’s life on a weekly
basis to conduct intensive behavioral therapy. A guest room has been converted into
a therapy room since Arthur’s diagnosis. Therapy programs are determined by the
consultant, our skilled and very talented program manager, Bonnie. Therapists then
teach/facilitate the curriculum. A sample of his current programming includes:
gaining attention, observational learning (appropriate play with others), conversation
skills, appropriate use of computer games, turn taking, and some academic content
such as matching, number correspondence, and sequencing. Much of the therapy
is “play based.” Arthur’s interests and abilities are taken into consideration. His
therapists challenge him, have high expectations, enjoy and accept him for who he
is. They make him laugh and sometimes make him cry! Arthur works hard during
his therapy sessions. His teachers are skilled at making learning an adventure.
Not all children with autism have home programs. Currently it is not a covered
service through health insurance, the state of Washington’s school districts or
DDD (Department of Developmental Disability). When a child is diagnosed with
autism, most professionals, doctors, other parents and experts will strongly urge
the family to start an in-home program in addition to preschool. Intensive early
intervention therapy will make a child with autism more able. It’s been
demonstrated. It is recommended.  Naturally a parent will do whatever they can for
their child. The drive to do everything you can is strong. This presents a problem
for many families. The majority of parents can not find $25-40,000 / year. This is
a tremendous burden. It is the hope of many that families will not be given this
financial burden in the future. In addition to this strain, parents also face the
avalanche of information about biomedical treatment options, special diets, drugs,
miracle cures. It’s overwhelming and currently there is no formal treatment plan
for children with autism like there is for diabetes or leukemia. Autism is an organic
condition that is behaviorally based—it looks different in every child—making it
very difficult to test treatments and prove effectiveness. But try parents do! We
go on tips from other parents, doctors, and anecdotal stories. We assess the cost
(financial and emotional) of trying new treatment options. Decisions are made
based on what families can do—what’s realistic, affordable, doable, and best for the
child. This is a complicated process. Fortunately Seattle is home to a newly created
center for autism treatment. ASTAR center, a non profit agency that aims to
provide help to families through comprehensive treatment and coordination. This
includes one-stop-shopping for assessment, diagnosis, biomedical treatment
(if necessary), speech therapy, physical therapy, behavioral therapy consultation
and implementation of home programs, on-going support, public school advocacy,
and emotional support. Check out www.astarcenter.org for more information. 
You’ll notice Arthur is the poster child…!
 
Is there a cure for autism?
No. But some will tell you their child recovered or was cured. This is debatable.
As parents of Arthur, we do no believe there is a cure for autism. This does not mean
we won’t do all our family can do to help Arthur become more able. One person’s
“cure” does not mean it will work for everyone. It’s a developmental lottery and
some choose to try all the unproven treatment options (very few are proven). 
Other’s simply do what they feel is best for their child—proven or unproven—which
might just be 1 or 2 strategies.  This sometimes divides the autism community.  I
believe we should try to respect the individual decisions of parents. We will only
diffuse our efforts to help children with autism if we are divided. One thing we
should all agree on and do something about is better financial coverage for
behavioral therapy. Several states cover this expense. Washington should be one of
them. It’s my experience that parents are tired, overloaded and can only focus on
their child’s specific needs. This makes it very difficult to organize a protest or lead
a letter writing campaign to elected officials.  Autism will remain low on the radar
unless we can organize and be heard. I won’t be leading any marches—I’m so tired
in the evenings. I just want to pour a glass of wine and enjoy a re run of the Simpsons.

I believe Arthur was born with autism. There is no way to prove this. It’s just a gut
feeling. Many children with autism developed normally until age 2 and then
regressed rapidly. Others have tremendous autoimmune issues, complicated
intestinal problems and chronic ear infections. Arthur had none of these issues.
Arthur tried the gluten and dairy free diet for 2 years. He tried supplements and
medication for a brief time. No substantial gains were made so we are currently
putting our energy into behavioral therapy, social interactions and lots of swimming,
music, and exploring the city and nature.  In the future we will try to keep an open
mind to new treatment options as long as they work for Arthur’s and his family.  
 
What I want Arthur to know:
You are loved. You are beautiful.  Life will be difficult and wonderful. I pray the
people who surround you now and in the future will be kind, compassionate,
respectful, hopeful, and will let you be who you are. You will be cared for now and
for as long as we can. As time goes on, others will care for you. If they don’t then
they’ll deal with your sister. She’s a feisty red head and won’t put up with you being
treated poorly. Like any human being, you’ll find your way. You will know
freedom, beauty, affliction, hope, sorrow and joy. You’ll remember how much you
were loved and this will help you love others. Love will help you stay centered,
creative, confident, free and hopeful. Sometimes I don’t feel like the world is meant
for you Arthur but I’m confident some will try to love and understand you. There is
goodness in the world and it will come to you. If it doesn’t I trust you will go and
find it.