In honor, love and respect for my son, who has a severe level of autism, I am writing this thread. I want to draw attention to something other than
the current statistics on autism (which is usually what "awareness" means), but instead point to the inner intelligence and inherent human value of
not only my child, but from what I’ve seen, the majority of people diagnosed with autism.
Now my son is unable to speak and can only communicate through pointing at pictures and basic body language, plus a couple of consistent signs. It
would be very easy to meet him and think “nobody’s home.” He flaps his hands and his ears. He makes odd sounds. He is intensely absorbed in
making patterns in the air with string, or ‘stimming’ with sticks. Yet, everyone who has ever worked with him, senses there is a lot more going
on inside than we can possibly guess.
A couple years ago, a teacher had a brilliant idea to see if he would use her iphone to take a picture on a nature walk. He photographed a beautiful,
perfectly centered red tulip, and several other flowers. I cried. We began to see if he would do this at other times. One Autism Society worker in
particular had this as her goal, and she was able to get him to take several more photographs.
I learned he is fascinated with the texture of wood and bark, with patterns of light and shadow, with leaves, with flowers – I learned that my son
sees beauty everywhere, even in places most people screen out and ignore – his eyes are always open. Light on the water, the patterns the strings
make in the air, the sounds of the whipping sticks, the feel of the sun and breeze on his face – my son is very good at Seeing and Being in a world
that wants him to be good at Learning and Doing.
There are other examples individuals with autism, who are non-verbal and appear just like my son – the outer strangeness overriding the inner
beauty. But these kids have found their voices through the magic of typing or word-boards (something I pray and hope for my son someday.) One child,
when asked what he’d been doing all the time they’d thought he didn’t know what was going on, he said, “Listening.” I know that’s what my
boy does! And he understands everything.
Some of you may have heard of Carly. She was on 20/20 and is now a strong advocate for people with autism. Here are a couple of short videos of her
and her story.
20/20 - brief excerpt:
Carly’s Café: Experience Autism Through Carly’s Eyes:
Another example: meet Tito Rijarshi Mukhopadhyay. He is a poet. He is completely non-verbal but writes poetry/prose prolifically. He has authored
several beautiful books on his inner experience, The Mind Tree, Beyond the Silence: My Life and the World of Autism, and How Can I Talk If My Lips
Don’t Move? I consider him to be a genius. But to see him on the outside, and his behaviors, he is severely disabled.
Here is a bit of an interview with him:
R.S. What can poetry communicate that prose cannot? You've spoken of your "love for designs" and "repetition" when writing? Can you speak
more about this love? Beyond the fact that rhyme and repetition seem themselves somehow autistic (in a good way), what do they communicate?
T.M. They make me think about a sound pattern. Designs can be visual and designs can be formed in sound. When I write, "A rock lay by the stream,"
it becomes less of a design than something like…
A rock lay waiting
By the stream
Ready to step inside,
So that it could begin
An existence —
Of a stepping stone!
(Whatever be that meaning.) The words make the rock become more than a thing to ignore. I made the words musical and used the letter "n" several
times. You may call it alliteration if you want to make it technical. It doesn't matter.
Here are a couple of extremely worthwhile documentary snippets/trailers as well:
A Mother’s Courage - Talking Back to Autism (you can see Tito in this briefly - he is of Indian heritage...)
The Horse Boy
This is a fantastic, mystical journey of healing in The Horse Boy, which is 100% amazing and worth seeing whether you know anyone with autism or not.
It holds no punches, and gives no ground. It is raw and absolutely, crushingly, beautifully honest.
Also, most people are now familiar with the genius of Temple Grandin, and her visual and engineering abilities – if not, she has a cool website:
I hope in my deepest heart, that those who have little or no experience with autism or individuals with autism, will gain greater compassion and
insight into the extreme challenge and hidden beauty that is more and more being revealed, not just by “savants” or “Special” autistic people,
but in the vast majority of them. Know that that boy with the flapping hands and odd sounds is fully human, awake and aware of much more than he
appears. Know that he may just have a gift that could bring your heart into profound fullness. Or that he may just be a normal kid on the inside.
I believe that how we treat those who are least able to care for themselves, is a litmus test for our cultural and spiritual evolution, and a real
test of who we are as a society. As a mom of a boy with severe autism, I deeply appreciate anyone who can ‘deny ignorance’ when it comes to the
mind and soul within the afflicted body of my son. We need you. You make the world a much, much better place for all of us. We need you to open up
space in your communities, to understand the monumental and sometimes desperate task of parenting our kids with autism, to help us work towards
solutions for our kids safety, health and education, and to create a nurturing place in the world for them to be after we, their parents and
guardians, are no longer able. Thank you so much for reading this thread...
Awesome post and much love to you and your son. Love his pictures and I think you're absolutely right about what he's admiring out in the world.
Autism isn't just about suffering--it's also about being in absolute awe about the beauty within the world.
Thank you so much, WhiteAlice! You are right, while there can be suffering with autism (self-injury, aggression, frustrations), there is infinitely
more to it than that - the beautiful minds inside all of that are incredible.
Blessings back to you and yours!
Hats off to you and your wonderful son, his pictures are fantastic.
My girlfriend has two daughters with Aspergers, a couple of years back her youngest did a story and took loads of pictures for the Autism Awareness
month brochure. We went to the launch party up in London and it was so nice to meet other parents from all levels of society that have children with,
or have autism themselves.
It was a very colourful evening indeed, there was art and photography from people with autism everywhere, some very talented work indeed.
Thank you! Loved the story of your girlfriend's daughters. There are very talented artists in our autism community here, too. And we have families
all over the cultural spectrum, as well as the autism spectrum, too.
Thank you so much for your comments. I agree - my son is extremely innocent and pure of heart - when he is doing well he has a brilliant smile and
extreme enthusiasm and joy for life - I've noticed this is a strong trend in people with autism. And I love that photograph - he took it a year ago
at 10 years of age. :-)
Thanks for sharing this thread with us. I agree that people with autism aren't necessarily disabled within its more that they handle external stimuli
much differently. I'm partial to the idea that Austic kids tend to know more about this life experience, and what its really about, than we do. You
have the gift of having a child with Autism for a reason and Im sure part of that reason is to help people better understand the nature of being
kudos to you!
edit on 12/9/2011 by ZacharyW because: (no reason given)
You are welcome - I'm glad you stopped by to look at it!
My kids are a gift to me - I have grown immeasurably by having them in my life, and all for the better. And you are right that there is a vast
challenge with sensory input - with some kids it is a lack of ability to screen out visual or auditory or other sensory input. A lot of "stimming"
behavior, its believed, is an attempt to control or moderate sensory input. I think that's what the Carly's Cafe Experience video shows, in addition
to the difficulty communicating what she wants. Other inputs are not felt strongly, which is also a challenge and can lead to a child being injured
and not being aware of it, or other not-fun issues. But again, beneath all that is a mind soaking up life in a unique way that has much to give us
all if we can find a way in...
Thank you for your insights!
edit on 6-4-2013 by AboveBoard because: (no reason given)
Beautiful post and thanks for the awareness. Strange how I started to hover over a post of yours for some reason on another thread and saw your tag. I
don't typically read them either.
I always new that autistic people existed somewhere eskew from our general reality and I can see the consistency in other illnesses having had a
severely paranoid schizophrenic uncle and another relative from another family was also. Their reality isn't always ours, but it doesn't make it less
It's a shame we live in a world where it's "lead, follow or get out the way" and we never stop to smell or take pictures of the followers as it where.
edit on 6-5-2013 by masta12d because: (no reason given)
Would just like to say that I highly recommend 'The Horse Boy' for everyone with autism in their family and also everyone else. Very inspiring film,
and evidence of what a real Shaman can accomplish, with the love of a family too, of course.
Coincidentally i purchased the soundtrack to the documentary just a couple days ago.
Also, here it is in full on youtube for anyone wishing to watch the whole thing, though it would be good also i think to buy it and support the film
if you are able. Lot of little autistic boy tantrums in the beginning, but they payoff in the end is more than worth it imo.
I am a BIG fan of The Horse Boy!! Thank you for sharing the youtube link. And the family is worth supporting by purchasing the actual book/video.
It is incredibly moving. I was in tears watching it for most of the movie, and felt every tantrum with empathy, cheered with every small step
forward, agonized with the set-backs and was amazed at the conclusion. Time well and cathartically spent!
I think even people without kids with autism can appreciate the rare glimpse of this hidden, quiet culture, the amazing scenery, the family drama and
the power of the Mongolian shamans.
I can feel your love and appreciation for the soul you mother, so sweet n_n!
What Im about to say might seem 'off' or even totally backwards to some, but it is a firm beleif.
I beleive those with autism and such human-experiences within this realm of existence - are the way they are because the soul energy they carry is too
much or too powerful for the human body they are too incarnate in, thus the soul does not "hardwire" correctly into the human baby.
I 150% in my heart KNOW that things like autism and MANY other "dis-orders" (sick word, im sorry..) can be fixed just like that! The human body has
an electromagnetic field, which is the 'power generator' of the body and soul in union - it comes from the heart (please see
The chakra system that is unionized within the spirit, which is bonded with the body - can be fixed and adjusted with intent (thought waves),
crystals, and specific magnets that help 're-align' certain chakra centers. Those who are not experienced or adept in the spiritual traditions and
practises will perceive this as far off.. but this isnt for those people.
Basically I am saying there is a way to fix the "hardwiring" of the soul body with the human body and bring forth the balance that is needed. One
day humanity will figure such things out, but deffiantely not in an era where a few bloodlines are controlling everything..
Back to your story and OP - very beautiful my friend, I appreciate what you have written again. Your heart is pure gold I feel, and that is why such a
pwoerful soul energy has chosen to incarnate with you
Thank you so much masta12d - I'm sorry I didn't see your post earlier! It means a lot to me to be able to share the best lesson my son has taught
me, which is how much every human being needs to be valued, acknowledged and 'seen' in this world, no matter their perceived limitations - hidden
greatness may lie within.
Thank you also for your empathy, and seeing the similarities in your own life with your Uncle - most everybody has someone in their life that relates
to the idea of special developmental needs or mental illness issues. It is a huge and sometimes hidden struggle for families as they work to cope
with the challenge.
Thank you so much for reading my thread, covertpanther!
And I don't think you are "off" at all, though I do believe part of the reason autism is happening so often is that there are environmental factors
at play from the slow poisoning of our planet since the Industrial Revolution - toxins are at work, imo, combined with a genetic vulnerability. I
think it is a whole-body issue, and that is part of the difficulty in treating it with allopathic medicine. That being said, there is potentially more
to it than that - my son has always been a very bright soul. So why these children? That is an interesting question, no?
I would agree that it is possible to shift things instantly, and to see the results either right away or over a longer time, as the individual needs
(sudden integration might be as problematic for someone with autism as the sudden loss of integration would be for a 'typical' person - the shock
would be very great). Healing can happen, and I hold my heart open to it for my son, and for all of those who have autism. Not because they are
somehow inherently "wrong" or "need fixing" but because everyone deserves to be able to share their thoughts, to have their souls shine through
into this world. In the meantime, I appreciate who he is, always.
I hope someday to be able to report back here with an update on my sweet boy - we shall see...
Peace to you, and thank you again, for your very kind and welcome response, covertpanther - I look forward to learning more about you! You are a
Beautiful post, AboveBoard
I sometimes wonder if we aren't all just a fraction away from autism, as well.
Loved the photographs...as I love "patterns" too. Of course, we all require patterns to make sense of this world.
I also loved the quoted answer - "Listening". Love that!
Best wishes to you and yours!
Thank you for sharing your story and whenever I run across autism cases, I can't help but want to share something that I considered revolutionary. I
say this because I saw the results and have heard success stories from others. I did a thread
Here on the IPAD serving, unintentionally, as a device for communicating with autistic
people. It seemed downright miraculous to me and made me realize the frustration families and individuals endure, unable to communicate with each
other in a full enough sense.
Anyway, I hope you may find something of interest and useful there.
Thank you for reading my thread! I am aware of the ipad, and my boy is in a school right now where he is supposed to be getting trained to work with
Pro-Loquo-To-Go (I think that's how its spelled) which is a very expensive and fancy app for non-verbal or communication limited individuals,
including those with autism.
We are trying to get his hand to choose a pictogram/word only once, as 'tapping' is one of his stimming behaviors.
I hold out hope for this, as nothing else is making much headway.
You are most welcome Ab and there are some good links in that thread too.
"Expensive app?" How much? 200.00 eh? Breaks my heart some folks try to profit from such advents. I realize there are costs involved, but the
distribution of the ap to families with autism should be free, period. Surely there are people who would volunteer funding for such endeavors,
specifically that one. I will look into it a bit more.
ETA: Have you tried a wood grain picture for pictogram, or something he likes as a pic for words? Maybe designing/creating your own pictograms would
some info I ran across:
Researchers in the College of Education at Auburn University recently received a grant from the National Center for Technology Innovation to
conduct research using iPads tailored to meet the needs of children with autism. The team will evaluate their effectiveness in increasing the
children’s social and communication skills. They’ll use video storytelling and develop touch-activated voice recordings that children can share in
interactions with each other. Scott Renner, coordinator of assistive technology in the Center for Disability Research and Service and one of the
authors of the grant proposal, cites cost-effectiveness as a major factor that influenced the choice of iPads.
People with autism spectrum disorders tend to thrive on routine, and laminated paper picture-based schedules have been used for years as part of best
practices in classrooms and therapy settings for children with autism. Apps are surfacing that do everything from making picture-based daily schedules
(iPrompts, PictureScheduler, StepStones), to creating social stories (Stories2Learn) — photo-based “books” that help children with autism
understand their own behavior and others’ feelings. Social stories can help children learn social routines and expectations, review appropriate
interactions, and prepare for new situations (such as a medical procedure).
Instead of printing photos and text from a computer, laminating and binding the books and storing them, parents and educators can search online for
images or snap a photo with their iPhone and quickly and easily create a portable electronic story with text and voice recording.
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