Thursday, April 2, 2015

World Autism Awareness Day 2015

By Philip

I want people to know autism is another way of being. I am weary of stereotypes that make us out to be less human than neurotypicals. I have listened to people talk negatively about autism since I was diagnosed. I learned to hate myself and think I was a monster for causing so much hardship. I can't let others continue living under popular ideas about autism. Let’s pretend you are like me. You can't talk; but having a thinking mind, you can understand. Imagine you are each day answering back what you mean to say. But only you can hear it. People hear your voice saying things you don't necessarily mean. They think that’s all you are capable of thinking.  People see you stimming by your repetitive flapping or tapping. They think there is no purpose. They don't understand the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for me to keep up with, and people trying to engage me. It is hard on me to put my stims away but I try. People see your hyper movement. They prefer you to sit quietly. It’s hard to feel my body in space. I prefer to move because I can feel my body better and peacefully work. I work better sitting than I used to. The reason is now I get interesting lessons.

Interesting subjects like math, science, social studies, and language arts really stimulate my thinking, ease my mind, and teach me something about the world. I was not always taught in the way I am now. Many years of my life were spent in ABA school. I was made to do my drills over and over until I was so bored and frustrated with my teachers. I would melt down. I am telling you ABA is not the solution. ABA is long hours meeting pointless goals like pointing to flashcards and pointing to my nose. If pointless goals are your passion, then I pity your kids. People need to be able to set their own goals. No person should be without a voice. I believe in teaching communication first. Meaningful communication means being able to say what I really want to say. People must believe we are capable and our minds are intact.

Most importantly, my parents have been great. Love is felt when you are accepted. Love is felt peacefully when you are no longer seen by your momentary deficits but by your attributes that make you a complete person.

I peacefully make friends now. I learn normally. My school values me. I make my own goals. My parents support me by communicating to others about autism and me. They play. They make my life as normal as possible.


I think autism is no better or worse than a typical life. Each life is special in its own way. I love my life as autistic. 




13 comments:

  1. Thank you for this viewpoint. My own son, also Philip, is 21 and non-verbal, and we know there is such an intelligent young man inside. He wasn't diagnosed until really late as his autism was hidden by other symptoms that gave him another diagnosis, I'm at a loss to know how to teach/reach him now that he is out of the school system.

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    1. Hi Annemarie,
      I am glad you found Philip's blog. I was not aware my son could have acquired this kind of communication till 2 years ago when I found out about Rapid Prompting Method (RPM). I'd like you to read this post: http://faithhopeloveautism.blogspot.com/2013/09/never-too-late.html. It is about a man starting RPM at age 41. I would also recommend watching the movie Wretches and Jabberers. You will be inspired by the nonverbal adults who learned to type to communicate at an older age. Use this blog as a resource as I have tabs on resources, videos, and RPM providers. There is also a Facebook group called Unlocking Voices-Using RPM which is an amazing community of people helping each other implement it. You can definitely learn this technique and help your son unlock his voice. My son credits RPM and Soma (who created RPM) for giving him his voice.

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  2. Hi Lisa & Phillip! Thank you so much for sharing your journey:). My daughter has autism & has always been nonverbal. She is also 12. I feel like we have tried everything to get her to communicatle. It almost seems like she doesn't care if she ever does? I love hearing what people with autism feel & think! I want so badly to be part of her world. I read what you said about RPM-will look into it. Do you have any other advice for me to help her see the value in communicating with us? Thank you SO much:) Amy

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    1. Hi Amy, I think your daughter would like to communicate with you. She just doesn't have the means to YET. I have seen it over and over again. Nonverbal kids are not able to get their mouths to say what they want to say and in many cases can't even direct their bodies to move the way they desire because there is a disconnect between the brain and the body. The brain's center for speech, the motor control that allows us to express language, is on the opposite side of the brain that controls language, our actual thoughts and ideas put in words. RPM is based on accessing the most direct neural pathways to allow for communication. I would encourage you to make use of this blog's Pages tabs to look at the resources, videos, and RPM provider information to learn about RPM. I think it is the best thing out there for nonverbal kids like ours. Another thing you can start doing right now, is talking to your daughter like you would any 12 year old. Read age appropriate books. Assume she is listening and comprehending. It is quite a switch in mindset and action, and takes time to do, but it will make a world of difference. Best wishes!

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    2. Hello Amy, Thanks for sharing. I have a son that is 14 and is much the same. Your question lead to Lisa's reply that was good advise for me as well.

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  3. What a beautiful and well spoken testimony. This is the kind of writing that will change people's view of autism so, please, keep it coming! I read this first on Mighty, which someone had shared on Facebook. This friend is from the Son-Rise program, which could also prove incredibly beneficial for your son. Philip, you're the man! I'm excited to know how well you're taken care of, to what a great extent you enjoy your life, and that your family is in God's hands. You are a blessing to the rest of us! Amen!

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  4. Hi,

    I have a two year old child, non verbal. The ABA is very frustrating to him. What other therapy do you recommend? Or was the ABA the platform for you communication and now you can convey how frustrating it was. What you wrote really touched my heart and describes my son, moving constantly to feel comfortable etc. I hope you know this article will touch many people and your writing will help more than you know! Thank you Philip and family. Thank you

    Sincerely,

    Dana

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    1. Hi Dana,
      This is Lisa, Philip's mom. What got Philip communicating is a method called Rapid Prompting Method (RPM). The official website is www.halo-soma.org and I have a list of RPM Providers in the pages section of this blog. It is a lot of work, but it begins with presuming competence. You can start reframing your view of autism now by talking to your child normally and assuming he is understanding like a normal 2 year old even if he does not appear to be understanding. Introduce literacy early on by reading to him and showing him the words on the page as you read. If you use flashcards, make sure they have the corresponding written words on them. My son used to love the sturdy flashcards with the names on them and would line them up for fun. Meanwhile the ABA school used just picture flashcards. Literacy will go a long way in giving our kids an unlimited vocabulary. Another thing we did at an early age (3 and a half-5) was something called RDI. You really don't have to do RDI with a professional but it is about allowing your child to join you in normal activities like letting him help you with simple chores like putting the clothes in the laundry machine and basically doing activities together in a relaxed way with your guidance. You want to let your son know you value and respect him as he is, and you are there to teach him and lend him support so he can join in the world and participate in a manner that works best for him.

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  5. I really really LOVED your testimony.
    Thank you so much for allowing us to be in your shoes atleast for a split second. Im a mother of 4 autistic boys. I deal with frim high function to nonverbal. Its hard and overwhelming at times, but i wouldn't have it any other way. I try my best to be there n support them, but at times i feel so alone and lost. My oldest is 10 and he is a very smart and bright young boy! , it breaks my heart to see him with no friends. He is so eager to have friends. He thinks he is weird and sometimes says he is a looser.
    My second child is a sweetheart! He is 6 yrs and was a nonverbal, but i always felt he was sooooo eager to communicate. I neverrr stopped, i always bugged him so he can communicate n socialize. He is a fast learner. His receptive language is a still a bit low BUT im happy to say i can have a short conversation with him now
    My third is my 4 yr old son, he is a very smart boy. He speaks a lot now, its just his behavior. He likes to hear loud noises and hit. He needs that stimulation of deep pressure to calm down. he is very sweet n lovessss to dance. He can remember scenes from movies n memorize scripts ( i think he knows almost all the scenes from transformers)
    My fourth child is twin. He is nonverbal. He is 2 yrs old. I sooo buggghh him for kisses and huggggsss. I it went from just screaming and flapping arms and jumping up and down to laughing n playing. I can parallel play n sing songs. I love that he now comes to me if he needs help. He has no prelanguistic skills , but i feel he is more happier now.
    All of them have speech, OT and Social skills program and behavior. Because of this is hard to go out or put them in sports. What do you recommend ? From makin friends to ways on how to help with their sensory?

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    1. Hi Aleandra, sorry for the delay in responding (the holiday got me a bit off track). I have read your comment to Philip and he will respond at some point. In the meantime you can search the blog under "friends" and "sensory" as there are some posts already on those subjects, but I will see if he has anything new to add.

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  6. Hello Lisa,

    my name is Elena, I am currently studying my MA on Cognitive Sciences and conducting a study on nonverbal autism for one of my courses. I found this blog and I am, firstly, amazed by Philip's strenght, and secondly, wondering how did he come to acquire language. It would be very interesting for me to know a little bit more about your story, and also because it may help other children with the same difficulties. My main concern is how did he come to acquire language, what methodology did he follow. Thank you very much for your time, and also I am glad that Philip found his way to communicate his thoughts and feelings. Best regards,

    Elena

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  7. Philip you are an amazing advocate.... Because it is better coming from a non speaking person I often reply to parents with your blogs. You are amazing, thank you for being you. Thank you Lisa for giving Philip the means to advocate. :-).

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