Though these are challenging times, we hope these stories offer a look
into the many diverse perspectives in our community, and provide
inspiring and uplifting content when we need it most.
Meet Matty W.
At Autism Speaks, we take pride in
sharing stories from our community and providing a
platform for people with autism and their families
to provide unique perspectives about life on the
spectrum. We
celebrate individuality and diversity, and aim to recognize both
the triumphs and the struggles of people from
all walks of life.
Earlier this year, as we celebrated 15 years of progress with a
reimagined look, our president and CEO Angela
Geiger said it best:
"Over the years, we have heard from the vast and diverse autism
community from our supporters to our critics, and from those whose
autism is their greatest strength to those for whom autism can be a
daily challenge. [We aim] to highlight the depth, breadth
and infinite differences along the autism spectrum and to show our
commitment to listening, evolving and reflecting those we
serve. "
The story of 28-year-old Matty W. from Western
Pennsylvania encompasses the highs and lows, struggles and
successes that often accompany an autism
diagnosis. Matty's journey hasn't been easy in fact his
dad, Mark, says it's been quite difficult since the
youngest of his three children was diagnosed in
1994 at two and a half years old.
Through even the toughest times, Mark and his family have been
Matty's biggest cheerleaders and support
system, advocating for him and fundraising in
support of Autism Speaks and the life-changing research that
can lead to a better life for Matty and other people with
autism.
"I'm just a regular guy a teacher in a small town but my
family and I have raised more than a quarter of a
million dollars for Autism Speaks over the
years. We've never missed a Walk in the Pittsburgh
area and plan to be there for as long as we can. Not
only does it give us a sense of community, but
I truly believe there's still so much to be
learned about autism. I know there's a
lot of research being done by really
smart people, especially in the biomedical
field, so I'm hoping they find things
that can improve Matty's life. There's more work to be done
and we're going to do whatever we can to pitch in. "
Mark says although Matty can't express himself with
words, he knows that his son takes pride in walking beside
his team, Marchers for Matty, on Walk days. He always
sees the biggest smile on his face when they join
the thousands of other families in the greater Pittsburgh
area as they walk in unison towards a brighter
tomorrow.
"We work and fundraise all year to prepare for the
Walk. We wear the matching shirts and make a day of it. Walk
Day is a celebration of hope for my family. We have over 100
friends, family, students and colleagues join in a sea of others
walking for a better life for Matty and others like
him. It's one of the best days of the year."
Learn more about Matty and his autism journey through the words of
his dad, Mark, in this Q&A: [link removed]
What spurred you to seek a diagnosis for Matty?
Matty appeared to be developing normally up until about 18 months old.
His language then began to regress noticeably. He seemed to become
more distant and detached. We discussed it with his doctor and he
suggested an auditory brain stem response test and then a full
evaluation a full day at the Developmental Center at Children's
Hospital in Pittsburgh. At the end of the day, all the professionals
including a speech therapist, occupational therapist and developmental
psychologist gathered with us in a circle and gave the diagnosis. It
was the early 1990s and there was little attention given to autism. I
was not sure what it actually meant to be autistic. Nevertheless, we
were confident we could get Matty the best medical care and get him
better. We had no idea how little was known about autism and the
limited services available to families at the time. When we left that
meeting, we started the fight to get Matty the best treatments,
therapy and supports available with the hope of giving him every
opportunity at a "normal" life. We have not stopped in
that fight.
What thoughts first ran through your head when Matty was diagnosed?
My first thoughts after hearing the word autism associated with Matty
was a belief that we could get him help. Beyond that, I was just numb
to it all, honestly.
After you received the diagnosis, what were the next steps to getting
your son the services and supports he needed?
We initially registered him with a mental health base unit. There are
several to choose from and this government funded agency assigns you a
support service coordinator. This coordinator assists with helping the
family access all support resources available to help with social,
language and life skill development. Matt received medical assistance
due to the dual diagnosis of mental health and intellectual
disabilities. Initially, Matt was assigned to an Alliance for Infants
support group because he was under age three. This group consisted of
special educators and children with similar developmental delays who
gathered a few times a week to work together with social interaction
and some language stimulation. Matt continued this support until he
turned three and qualified for early intervention.
We also utilized the Easter Seals program, which services children
with mixed disabilities in a group setting. It was quite obvious that
Matt was making limited progress within this setting, but we still
forged on. It was then that we researched and networked with other
local families to find scientifically and research-based services to
give Matt a fighting chance to overcome all the challenges that go
along with autism. Matt participated in this Easter Seals program
while waiting to move up on several waiting lists to receive intensive
interventions from a more specialized program utilizing the principles
of applied behavioral analysis (ABA), specifically for children with
autism within a home setting. At that point, we networked with other
families to find an agency that was able to staff a program for Matt
and work on language, social and life skills within the home setting.
Please share some of the things Matty struggles with as a result of
his autism.
The biggest struggle Matt has is lack of language. He is non-verbal
so he cannot fully express his desires and needs. He can also not
read, write or type on a computer. He is not able to understand the
fun associated with any type of game and I am not sure if he
understands what fun is. Physically, he has gastrointestinal issues
and epilepsy, and also has a lot of trouble sleeping.
Please share some of the things at which he excels.
Matt is pretty good at doing puzzles. I wish there was more to
highlight but honestly, I'd say his superpower is having the
patience to deal with very rough and frustrating
conditions. He can complete simple tasks like sorting,
carrying, sweeping up ones he does put to good use when he volunteers
at the Greater Pittsburgh Community Food Bank - and he brings out the
best in people. Those who work with him and get to spend time with him
absolutely love him.
What makes you most proud of your son?
I am so very proud that Matt endures all of the challenges associated
with his autism with such patience and good humor. Given that he
cannot express his desires and is physically impacted by his
conditions and medications, he is generally cooperative, happy and
gentle.
What advice would you give to other parents with a child/children on
the spectrum?
Dealing with autism can be a struggle - I can't sugarcoat it. It is
hard but there is hope. The resources, therapies, medications,
services, understanding, and knowledge today is significantly better
than it was for us 25 years ago. If you educate yourself, network and
advocate for your child, real and genuine progress is possible and may
be likely.
Please share five words that best describe your son.
Gentle. Patient. Inspiring. Sensory. Loving.
The story shared above represents the experience, views and
perspectives of the individual(s) highlighted. We aim to share stories
across the spectrum and throughout the life span, but the information
provided on our website is not a recommendation, referral or
endorsement of any resource, therapeutic method, or service provider
and does not replace the advice of medical, legal or educational
professionals.
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