My story is complicated
but has helped turn me into the person I am today. I've gotten where I am today
because of a lot of hard work.
My story about autism didn't start until I was an adult. When I was a kid, there weren’t tests to diagnosis high functioning autism. I
went through childhood struggling in school, not understanding why. My
diagnosis for Asperger’s came from me wanting answers about myself. It started from an experience I had with one of my music
therapy practicums. I was placed with a
music therapist who worked with a young boy with Asperger Syndrome. While going
through my practicum, I observed certain characteristics he would do when he was
nervous, such as hiding under a dusty mat, whispering to the music therapist or
not saying anything or playing any instruments. When I would go for my
supervision, I wrote in my journals about how I didn't quite understand why he
was hiding from me. As I started building rapport with him, I noticed similar
characteristics of mine from childhood and beyond. Eventually, I had a
conversation with my sister, and she
encouraged me to go for an evaluation.
I recall being nervous the day I went in for testing. Exams always make me nervous, and I tend to take
several breaks to collect my thoughts. The test was long, and I needed to take a few breaks to
refresh my mind. I always try to do my best no matter what, but tests are just
not something I do well. When I received my results, I was relieved. It
felt like a huge weight was lifted off my
shoulders. Finally, I understood why I was different. My two music therapy
professors and various friends were happy I finally had answers. However, even
though it brought me relief, it took a long time for me to adjust. I started
being aware of situations that gave me a lot
of anxiety and tried experimenting with different sensory products. I asked
people to sit on me to provide pressure,
used ear plugs in class, and even tried sleeping with a weighted blanket. The
biggest struggle I had with my diagnosis came in 2012, when I went away to New
Jersey to do a music therapy internship.
When I picked an internship site, I went and visited places
and asked questions about what was expected
of me. I prayed about it and chose what I
felt in my heart, believing at the time it
was where God wanted me to be. During the internship, however, I encountered
some difficulty. The music therapists weren't
willing to help me, and I felt judged and discriminated
against. I was there when Superstorm Sandy hit the Jersey Shore, and I remember how scared I felt from
being away from home. After the storm had hit
and everything was slowly getting back to normal, I had a meeting with my
internship director. I will never forget how I felt the moment she told me I
would never be successful as a music therapist because of my disability. She told me I thought too much in black and
white, was not flexible enough, saw things in tunnel vision, etc. She also said
that she was going to give me an incomplete grade and told me to go home and
get help. I was distraught that night,
confused and angry with the situation. It was awkward trying to explain to my
clients why I was leaving so early. When I came home to Pennsylvania, I went to
see a psychologist. I remember being confused as to what was going on and what
had happened. That's when I received a diagnosis of depression and anxiety.
Angry with God, I didn’t
understand why this happened. I struggled to sleep for four months, and it was difficult to leave the house because
I hated my life so much. Once I started going to church again, I began to feel
hope. The people there encouraged me and prayed for me, even though they didn't
know me very well. I got involved with my church’s worship team and forced
myself to meet people. That also gave me
hope.
Being around encouraging people helped me get through this
dark and cloudy time. Eventually, I found a new place to do my internship again
– the nursing home where I did an earlier practicum. I didn't really want to finish my internship in a
nursing home, but was willing to try and to do whatever it took to graduate.
Once I started to understand Alzheimers disease, I was better equipped to
handle this population and stopped taking their comments personally.
By the time I finished my internship, I had built professional relationships with the
residents there and really enjoyed being
there. My biggest relief was finishing and feeling such a sense of
accomplishment. My family was especially proud of me and relieved. Receiving my
diploma in the mail reminded me of all the hard work I put in. I had enough
people encouraging me to not give up, even though I wanted to sometimes.
My framed diploma in my room reminds me to not give up on
myself. I credit my internship supervisor at the nursing home as the reason I
got through the internship the second
time. Since having my practicum with him before, he knew what I was capable of
and that made a difference. I needed someone to remind me why I had chosen to
go into music therapy.
For years, people
didn't believe I would make it to college. High school was a struggle with my learning difficulties; how could someone like
me make it through college? Through all of this, I discovered that with some
hard work and dedication, people can do whatever they set you’re their minds to. Today, I am continuing to persevere
through the trials and tribulations of this disorder.
As an adult, my life continues to be a struggle. I decided
not to continue music therapy and receive help from a government agency. Now
the most difficult part is finding a job suited to me so that I can be successful. In the past three years, I’ve learned to cope with Asperger's
better. I've read books on it and continue to read articles and discover
companies that sell sensory equipment. I'm starting to love myself again and
slowly regrowing my confidence.
I hope that my story encourages someone today who might be
going through the same thing I did. Even though this month is about awareness,
I'm choosing to celebrate this month. I want to
remember how much I've grown and how much I've accomplished, as I continue to
set new goals for myself. I will always be autistic
but can learn to cope with it better. I will continue to struggle with it for
the rest of my life, but it doesn't define me. I will persist in pushing myself
out of my comfort zone and will continue to grow and handle situations better.
If it wasn’t for the support I have from my family and friends, I don't know
where I would be. Their love and encouragement spur
me on.
* * *
Amy, 27, from Pittsburgh PA, attended Slippery Rock
University where she studied Music Therapy and Voice. She plays acoustic, bass and piano for her
church worship team. Currently, Amy is a
home health aide working with a child with Cerebral Palsy. She teaches piano, acoustic guitar, and voice
lessons at her home.
If you have a story about autism that you would like to share, please email me at greengrandma@comcast.net.
