Living with Profound Autism
Using all Forms of Expression to Share the Experience of Living with Profound Autism
Living with Profound Autism is a place for Family Members to...
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Share your thoughts and feelings.
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Express yourself through prose, poetry, art, images... basically any form that works for you...
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Engage with others who are also living with Profound Autism. We may feel our world is invisible but we are NOT alone!
Constantly adding more content... please scroll to see what's new!!!
Who We Are...
HI! I'm Julie! I live in the Chicago area with my husband, Daniel, and son, Miles. I also enjoy as many visits I can get with my daughter, Skylar who is living the young adult life in DC! My boy is 25 and over the years I have had ALL the feelings!!! One thing that has helped me is painting and talking to other people who have profound autism in their lives. My sister and I decided to create Living with Profound Autism to connect, share, and learn about how all of you found ways to get through our complicated days... Hope you join the conversation!!
Hi! I'm Susie! I fell in love with Miles from the second he was born and entered the world of Profound Autism with Julie all those years ago. It's been an adventure and we are looking forward to meeting all of you!
Art Gallery...
I am So Lucky to Love You…
Through painting I have been able to process my life experiences. Art has become an outlet through which I am able to express myself and, hopefully, create a piece that holds meaning (perhaps different from my own) for the viewer.
“I am So Lucky to Love You” illustrates the intense effect having a child on the autism spectrum has on your life. It is a storm that changes the course of life and leaves you and your family forever changed. While my boy is on the more severe end of the spectrum and the winds can blow furiously, there are spaces of serenity and beauty only found when holding tight together through a torrential storm.
The most poignant moments of my life have been being present while looking into the purity of his eyes – it is truly transcendent.
Gold: with a flash life can change
Red: angry fits that emerge from
nowhere
Blue: true, simple, raw, tranquil
love expressed by someone
with autism.
Green: hope – though a complex
life, there must be hope
for the person and family
to experience greater and
greater amounts of the
tranquility and love that sustain them.
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Togetherness
Working together to figure out the life we are in and the one we want to grow into is everything. Strategizing on how to achieve shared goals can be very attractive… who knew?
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Mind Blown
Not much can alter a trajectory more than an autism diagnosis. Sitting there during the initial meetings a deafening occurs as your mind is completely blown away by the words exiting the doctor's mouth. As you turn to look at your partner you see in them all the fear, uncertainty, and panic within you. Life will never be the same and the trajectory on which you both now find yourselves is unknowable.
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Laughter is Everything!!
Painting says it all!!
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Chapters
Within every marriage a storybook plot can be found and chapter by chapter the narrative becomes ever richer. The depth of the story develops from intensity, confusion, connection, and shared history. Profound Autism has been a long and indeed profound chapter that influences all those that follow. Storybook plots use devices to resolve conflict and sometimes referring to nature is the best course of action... as olive branches are kept alive by the leaves and water that nourish them so is a marriage with every effort to see and support one another.
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Defying Stagnation
Call it what you want, but we have all felt an overwhelming urge to escape and move toward something with all the promise that other stage in life might offer. Energy, opportunity, disruption… life. A woman, hair unencumbered and free from any oppositional energy drives forward. Forward toward the unknown but forward. Forward toward danger but forward. Forward toward bliss but forward. Forward within herself.
Bravely forward.
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Embrace beauty when you can.
Embrace beauty’s potential;
Its growth;
Its serenity;
Its inspiration and
Its vibrancy.
With each embrace it becomes a part of you.
A reassurance that on the flip side of dark and grey color will reemerge.
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Let it Be…
While achieving radical acceptance of the most painful and challenging aspects of life is immensely difficult, fighting an unwinnable war is ultimately soul crushing. “Let it be…” is a release from the all-consuming battle making space for the promise within the unknown.
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Please also check out this website!! They invite you to submit your artwork for their foundation's online gallery dedicated to showcasing the extraordinary talents and diverse viewpoints of neurodivergent creators. All art mediums are accepted including sculpture, textiles, jewelry, painting, drawing, photography and more.
Blog and Dialogue... Click on the boxes below to contribute to the topic!!
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Resilience
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We know what it’s like. Life can be a tough opponent. With each stage you learn more, grow more, and constantly… BUILD UP RESILIENCY
When you’re young you think of how great it will be to become an adult with all the freedom to do and act however you want. You will not have to go to school and deal with all the intense social scrutiny, worry about grades in seemingly irrelevant classes, or feel uncomfortable and disappointed with your body. While life may be hard, your adult life will certainly be better… Round One.
Then comes the challenges of setting up that adult life. This metamorphosis into adulthood may include college, getting your first job, meeting a life partner, staying single, getting married, and starting a family. None of these stages in development feel easy- they are unpredictable, hard, and scary… Round Two.
When your baby is diagnosed with autism suddenly you are facing an opponent in a more challenging weight class than you ever expected. Round Three throws you off kilter and you are hit hard every time you see your child miss benchmarks. More punches come when professionals talk about the numerous intensive, essential, and intrusive therapies necessary when all you want to do is take your kid to the park and see them laugh in the sun. Nothing is normal and you must drastically adjust your training… Round Three.
Holy Hell, PROFOUND AUTISM!!! The trajectory during Round Three did not go the way you hoped. All the training and resiliency gained throughout your life is supremely tested now. Suddenly you are in the ring with an overpowering opponent who happens also to be a part of the person you love most and want to protect more than anything in the world… Round Four.
That love you have is the extra fuel your previously acquired resiliency bank needs to simply get through the day. Hit after hit (literally and metaphorically) depletes you to the point of staggering. Maybe a TKO is inevitable??? Something within, at that very moment, says “Absolutely Not Happening – this round is not taking me down, my kid down, or my family down.” Your intense resilience gives rise to the deep, gritty strength behind each powerful blow you land in the face of profound autism.
You will come out of Round Four bloody, bruised, and exhausted. You will absolutely feel defeated, but you aren’t. We are fighters and should always remind each other of that because our wins do not look like “typical” wins. Every day we get up to not only get by but to do so with humor and love is what makes us the... ULTIMATE HEAVY WEIGHT CHAMPIONS!!
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Imagine
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Imagine hearing your child was in a car accident. Imagine the car flipped and forever after your child would be significantly impaired and the trajectory of their and that of so many lives attached to theirs altered forever. Now imagine everyone who hears your child was in a car accident associates their experience with someone involved in a fender bender. Yes, someone in a fender bender and another person in a catastrophically overturned car are both technically victims of a car accident. The ramifications on their lives, however, are vastly different and it is in that reality the labeling of what occurred should be specific.
Autism is that car accident – please, bear with me before getting triggered by the analogy. The spectrum on which individuals with autism find themselves (and the family who loves and cares for them) is unconscionably vast with those labeled high functioning/low support/independent and those labeled profoundly autistic/low functioning/ significantly impaired are now seen to the general public as being simply autistic. It is fully understandable for “high functioning” people to resent being seen as disabled and to want to celebrate their neurodiversity. We, as a society, can and should realize the beauty and potential of individuals who experience the world in a different way. Those unique perspectives make our communal experience richer in ways we benefit from now and will continue to in the future.
Having acknowledged the experience of someone who has experienced a “fender bender”, I would like to consider a more catastrophic “car accident”. The victims of such intense collisions may need an exponential amount more assistance to get through the day and should be equally seen, understood, and respected. They are living tough lives, and it should be ok to say (while loving deeply) we are upset, angry, scared, and wish things were different for them.
The umbrella term for autism spectrum is as outsized as using the term car accident for accurately describing the vast implications having been in one might mean. It provides the most coverage of and for those who are under the middle and outer edge of fabric above. The people holding the umbrella’s handle- the children and adults who are “identified as” or are “labeled as” but MOST CERTAINLY ARE Profoundly Autistic are not seen. Look around… you most likely do not see an adult hitting themselves in the head, banging it against the wall, biting their hands, yelling out repetitively, destroying property, or reaching out to manhandle those who care for them most. They exist and they have been lost under the umbrella’s notch.
As a society we are all in a place where we want to have our experience seen, heard, and acknowledged. And, therefore, I realize this blog is a pebble in the ocean but the more we (as families of those who experience propound autism) throw our pebbles out there, the faster an island will arise. On the flag of this imaginary island, I would love to see symbols of intense solidarity, loud advocacy, and radical acceptance in the face of an overwhelming tsunami. We need help and should be seen – on that note, enough with the analogies, right?!?!
