“Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain.”
Vivian Greene

The very word Autism brings to mind something rather mystical.  Mostly, because I haven’t understood what it means even though it surrounds me in people I meet whose children have autism, or more technically, Autism Spectrum Disorder.  Recently, I met a beautiful young woman who is a writer, an artist, a poet, and a brave autistic warrior.  In becoming her friend, I am learning about this disability.  It is changing the way I think about it.

In honor of April being Autism Awareness Month,  I want to introduce you to her.

Her name is Melody Rain.

I asked Melody to tell me in her own words;

What is autism?

“Autism is a neurological and developmental disorder that affects ones ability to socialize with others, make and keep friends, and communicate and process communication and verbal information. It is often paired with other learning disorders or disabilities and sometimes other diagnoses. Autism represents a very wide spectrum concerning ability, disability (often referred to as severely affected, moderate to high functioning).

 

Many people with autism have below average IQ to normal IQ. Some considered to be high functioning may have normal to a very high IQ.  However, even those who may be considered to be “high functioning” may have what is called scattered abilities…meaning they may be able to function as typical in some areas but well below average in many other areas. This is why more support is needed for all levels of autism. Some people with autism hold down jobs, get married and live normal lives. Unfortunately, many struggle with living independent, slip through the cracks of support and need ongoing assistance from their parents. It is important to note that autism is a life long disability.

 

Once someone is diagnosed with autism (usually when a small child) they have autism for their entire life. Some may learn coping skills to help with some difficulties but often it is impossible to overcome many of the difficulties we may have. Autism currently affects 1 in 50 children in the US. These rates continue to grow larger as years progress.  Only 10% of those who are diagnosed with autism have savant skills or savantism. One leading misconception is that everyone with autism is exceptional at math and can do extraordinary things. We are all different and a common phrase within the autistic community is “if you have met one person with autism, you have met just that, one person with autism.”

What is the difference between autism and aspergers?

“Aspergers is just a “higher” functioning form of autism that is no longer recognized in the DMV. Its all just considered autism now. Usually people with aspergers have a normal to high IQ and they did not have difficulty speaking at a typical age. However, they may struggle with communication in many other ways. Many other symptoms that go with autism are also found in aspergers….especially some of the social difficulties.”

What is autism to you?

“Sometimes, to me, autism is beautiful because I like the person that I am.  I am innocent in the way I think and process things. I also enjoy the beauty that others take for granted. Many times I feel that autism is a gift because of how I am and the abilities that I have to see things in a different way than others. I also have a 6th sense in which I feel people’s emotions, connect to their thoughts or know things are going to happen before they do (this is not always fun for me).

 

Sometimes having autism makes me sad because I have a very difficult time connecting with people in a social way. I struggle with making friends, relating to others the way typical people relate to others and keeping friends. I often want to feel accepted and feel that I belong and that is hard to do. I am also very immature for my age because of my emotional development which makes it even harder for me. Also, autism causes me to struggle to live independently, function as a typical adult on my own and getting to places in life that others my age have already progressed to.

 

Sometimes I feel ashamed of that…but I have to remember how far I have come in life and that in itself is a huge accomplishment.”

What are some symptoms?

“Some symptoms of autism are having difficulties processing sensory information. Most people’s bodies are able to process sensory information and then expel it out like a system. However, sometimes we process too much sensory information at once and have no way to expel it back out. This can cause a lot of pain, high anxiety and fears. Some examples are sudden loud noises, touching (often light touches, tapping and poking), bright lights, too many people talking at once, certain tastes and smells can also bother us.

 

Other symptoms of autism can include not speaking at the typical age, having difficulty with communication…some experience bouts of mutism (especially girls), having a rigid need for routine or does a lot better when things are routine for them, difficulty with changes and transitions, anxiety, repetitive movements such as rocking, bouncing, swaying, flapping hands, pacing etc.”

Tell me about yourself.

“I am just like you in many ways. I enjoy some of the same things you may enjoy. I like having friends and feeling loved. I cry at sad movies and I love animals. I am also artistic. I like to draw, paint and I have recently sold some of my paintings. I also like to write poetry as a way of expressing difficult emotions. I love horses and wish I could ride a horse everyday.”

What is your earliest memory?

“…jumping in a pile of leaves. I think I was around 2 years old.”

Did you go to college?

“…when I was in high school the counselors told me I would never step foot in a college much less graduate from one. It was a long, hard difficult road and it took teachers/professors to believe in me but I did step into a college and I also graduated from one 🙂 I have my bachelors in psychology.”

What advice would you give to parents who have children that are recently diagnosed with autism?

“I would say the biggest thing to do is early intervention…also accepting your child’s diagnosis is a key to their own self confidence and emotional development. My parents were not accepting and did not acknowledge my autism or difficulties so I grew up thinking I was just a bad and not very smart kid.”

What do you like best about yourself?

“My child like innocence and love of God’s nature.”

If you could change one think about yourself what would it be?

“To be able to make friends easier and keep them.”

What do you feel you miss most by being autistic?

“friendship and allowed to be myself around others while still being accepted.”

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 2 Corinthians 12:9

What would you consider a dream job?

“My dream job would be counseling parents who have children with autism; advising them about autism, teaching about autism, and helping others understand it better.”

What do churches need to know about autism and serving children and adults with autism?

“Churches need to know that church is just as important for us as it is for them. We are left out of ministry and with the autism population growing…churches really need to think about including something as an outreach for those affected by autism. Many parents with affected children do not attend church in fear that they and their children will not be accepted. Many adults with autism feel the same way and have been even treated poorly in some churches.  Once we have a bad experience it is hard for us to try again.

My dream is for churches to educate themselves and others within the church about autism and offer ministries, such as having inclusive children’s ministries and offer fellowships and/support groups that would welcome in teens-adults who are interested in attending church. Also many moms/dads could benefit from Christ centered support/fellowship groups within the church. It is important to not leave out adults who are affected with autism or other developmental disabilities within church groups. Embrace and accept us as Jesus would.”

What are some struggles you face every day?

“Maintaining independence and understanding things that others take for granted. Often people can be mean or cruel in public and are not patient or kind.”

What or who helps you the most?

“My animals are a big support to me, but my autism worker helps me the most with understanding myself and knowing that my difficulties are just autism related. She helps me process things that I have a difficult time processing or understanding. She accepts me as I am and does not make me feel less of a person, but more complete.”

What is the best way for people to approach children or adults with autism?  Is there a difference?

“Just like you would anyone else. Ask them about their interests if you want them to engage with you. Try to enter “their world first” before expecting them to enter yours. Once you gain their trust they will open up to you more. However, we are always more in tune to our own interests …it is difficult for us to ask questions about your interests and to communicate the way you do with your typical peers concerning random topics. Always include them. Be a friend to them. Accept them as they are and don’t try to change them to fit your world. One key thing to being a friend to someone with autism is learning as much as you can about autism.”

What do you want others to know about autism?

“That others with autism are just as important, interesting as many of your friends. If you take the time to get to know us you may find you have a true and loyal friend. We also can teach you a lot about life in which you take for granted. Sometimes we are funny and we make you laugh. You may find a pure and innocent beauty about us if you would just look with your heart and then your eyes.”

I know you are a writer.

Can you share one of your poems?

Autism Is A World

Autism is a world
a world in which I live….
Sometimes it is unfriendly,
sometimes it is cold,
sometimes I am lonely,
and sometimes I am afraid….
Autism is a world
a world in which I live….
Sometimes it is beautiful,
sometimes it is wonderful,
sometimes I get lost in my world,
but do not be afraid…
Autism is a world
a world in which you can join…
By being friendly,
showing me that  you love me
and helping me not to be afraid….
Autism is a world
a world in which you can join…
that you may find it’s beauty
and see it’s wonder….
you may get lost with me
and we will never be afraid.
written by Melody Rain 2010

What is one of your favorite quotes you have written?

“One important thing to remember…whether a person with special needs can talk or not talk, walk or not walk; we are all human and we all have feelings just as you do…whether you think we express these feelings or not…we still have them. We can feel hurt by words or actions just like anyone else…some of us even more so.”~Melody Rain

What is your favorite Bible verse?

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

Melody’s artwork (below).  Just beautiful.

I have learned that autism doesn’t affect everyone in the same way.  These are amazing kids and adults who have real tangible struggles everyday.   Communicating with my child is something that I have always taken for granted.  Consider this in those that you meet that do not think or act as you do.  It is my hope that Autism Awareness would go beyond the month of April and be just that, awareness.

I truly believe, in the process of doing this interview, that autism is Melody’s gift to the world.  Not as most people see the world, but as God sees.

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.  John 9:1-3

Dance, Melody, dance.