Dreams

Elizabeth Bonker From Non-Speaking Autism to Rollins College Commencement Valedictorian

Classof22Elizabeth Bonker is raising her voice! Join us in celebrating her success with letterboarding and typing to share her brilliance and beauty with the world. From the Rollins College website: Raising Her Voice

###

May 05, 2022

By Elizabeth Bonker ’22, as told to Stephanie Rizzo ’09

Elizabeth Bonker ’22 long struggled to communicate with a world that didn’t always understand or accept her. Now, armed with her Rollins education, she’s starting a nonprofit to bring communication assistance to those affected by non-speaking autism.

At 24 years old, Elizabeth Bonker ’22 already has a resume to which most would only aspire. The social innovation major, English minor, and 2022 valedictorian is an author, activist, lyricist, and founder of the nonprofit Communication 4 ALL. She’s given a TEDMED talk, starred in a documentary, and helped countless others find their voices, all while graduating with honors from Rollins at the top of her class. And she did it all without speaking a word. Bonker is affected by non-speaking autism and communicates solely by typing, and she has a lot to say, especially about the ways people like her are perceived. Hear from Bonker in her own words about her trials and triumphs and the impact Rollins has had on her life.

I was born healthy and could speak as a toddler. Then, at 15 months old, my words were inexplicably taken from me. My parents took me to Yale Medical School, where I was diagnosed with autism. Despite what the doctors said, my parents never gave up on me. They recognized that I was a thinking person trapped in a silent cage.

It was only when my grandmother happened to see an episode of 60 Minutes that things started to change. The show aired a segment on Soma Mukhopadhyay, the creator of a system called the rapid prompting method (RPM) designed to help autistic non-speakers communicate. My mother reached out to her, and we were off to Texas. I was 6 years old, and we had found my Annie Sullivan.

Now, I communicate by typing on a keyboard. But when I first started, I spelled out words by pointing to letters on a letter board. People with non-speaking autism often have difficulty initiating movements, so learning to type is tedious. With months of practice, I made progress, and the world began to open up to me. I started writing poetry because it allowed me to say more in fewer words. 

Please visit the Rollins website to read more about Elizabeth's inspiring journey- Raising Her Voice


Invitation to Sponsor a Ukrainian Autism Family Coming to Vermont

UkraineSeeking SPONSORS for Ukrainian families arriving in Vermont. A dear friend and colleague Dr Theresa Cianciolo is purchasing a former hospital in Northern Vermont to create a "refugee" center. Theresa owns a home in Kyiv, she moved her family there to continue her work with orphans and children with special needs. She returned in February, as the war was imminent. Now the work is coming HERE to the USA. Sponsorship is primarily for the paperwork required.

Please email Kim at AutismAges@gmail.com or Agape4Ukraine@gmail.com if you think you might be interested. Thank you. XOX


Do You Ever Really Rest?

91A3DA1B-5E76-4A99-A055-B90900EBAD6EI saw this graphic on Insta yesterday. Haven't we all used our never ending exhaustion as a badge of autism honor? But how long can we manage before the badge simply weighs too much and we collapse? The Puritan work ethic has always been a American "thing." Autism families have taken it to an extreme.

In Connecticut we have pretty good DDS budgets - assuming your son or daughter with autism has a testable IQ under 70. If 70 or above, you're on decade long wait list for the handful of autism waivers. Other states are far worse than Connecticut.  Are you aware of the wait lists in your state, or country, if you're not in the USA?

Having budgets is a blessing. Finding staff is a curse. I have dollars for respite, and I self-hire. this means that either I have to leave my house, or I have to send off my 3 daughters with staff to a hotel - that I have to fund. Respite dollars are only for staff. So we stay home. A LOT. Together.

Tell us how you are planning, hoping, worrying, dreaming of the future for your loved one with autism. I think we'll be exhausted until our last breath. Such is the plight of caregivers, and women in particular.




We Need Puzzles Bakery and Cafe in Schenectady

Puzzles exterior Puzzles treats

Funny how people come into our lives and the timing. Earlier this week, I wrote about an autism Mom who was facing problems with her daughter's dental hygiene. Well, that Mom has another daughter who opened the amazing Puzzles Bakery and Cafe where she employed people with autism and launched awareness right in Schenectady, New York, near Albany. I visited Puzzles on March 11 back in 2016, and wrote about how fabulous it was then.  And will be AGAIN soon, we hope.  On a darker note, Sara got blowback because she used the Puzzle theme for autism.  The Neurodiversity crowd in action. Imagine causing grief for a young woman trying to help the community over... a symbol?   Sara had to close because of Covid, but the hope is that it will reopen.  In fact, the local paper featured Puzzles this week.

Foss: Puzzles Bakery and Cafe remains closed in Schenectady, but hopes to reopen

...What makes Puzzles’ ongoing limbo so distressing is its human toll. Puzzles Bakery closed

Pratt conceived the restaurant as a place where developmentally disabled adults would work side by side with their neurotypical peers, attaining the meaningful, real-world work experience that too often eludes them.

###

Written March 13, 2016 by Kim Rossi

Sometimes dreams come true. Thoughts and ideas on paper spring to life before your eyes.  For instance, I'm a big Harry Potter fan.  I can recall watching the very first movie in the theatre and marveling at how each scene turned the book into a cinematic reality before my eyes.   

Puzzles Sign CupcakesWhen I was a young woman, I joined the Junior League and volunteered at a local Children's Museum. One of their exhibits was "The Great Green Room" from the classic book, Goodnight Moon.   I had no kids of my own, but I knew the book, of course.  And when I walked into the room for the first time, I was transported into the pages. 

As my girls have aged into adulthood, I've been writing the story of their future in my mind's eye. A bakery with an autism theme has been a dream of mine - far fetched - but still, a dream.

On Friday night, I saw firsthand how that dream would look when I had the great honor of speaking at Puzzles Bakery & Cafe, Puzzles Micin Schenectady, New York, whose owner, Sara Mae Hickey is an autism sibling.  From their website:

In addition to serving delicious food, the bakery-café provides adults with developmental disabilities with an opportunity for personal growth, as well as a source of income, social interaction, and a sense of purpose.


Sara Mae has done everything right. And I mean everything. From the design of the signage, to the soothing, bright cheerful interior (with a community room) to the menu of fun, healthy and delicious foods, Puzzles would be a great bakery and cafe even without the autism theme.  But that theme is truly the icing on the cupcake.

I think the autism siblings will change the world for our kids.  They are battle tested.  Some will become advocates and warriors on behalf of their brothers and sisters.  Like Sara Mae Hickey has for her sister. 

Continue reading "We Need Puzzles Bakery and Cafe in Schenectady " »


National Autism Association Grants for Assistive Technology and Spelling!

NAA voice

THIS IS FANTASTIC! Thank you NAA, always fighting for families. XOX

Click National Autism Association Give A Voice Program

###

The intent of NAA’s Give A Voice program is to provide the opportunity for meaningful, effective communication to individuals with autism who are nonspeaking or unreliably speaking, and whose communication challenges put them at increased risk of injury or harm.

We are thrilled to announce that we are now offering access to certified practitioners in S2C (Spelling 2 Communicate) and RPM (Rapid Prompting Method) while continuing to offer our iPad AAC program.

S2C and RPM involve the process of communication through spelling on a letterboard. To learn more about letterboarding and how it works, we recommend visiting i-asc.org as well as reading the recently-released book “Underestimated: An Autism Miracle” by J.B. and Jamie Handley.

Grants for spellers will provide up to 4 sessions with a practitioner of your choice along with a set of letterboards.

NAA’s Give A Voice Program also can provide qualifying individuals with an assistive communication device including:

A 32GB Apple® iPad® (9.7″ – Wi-Fi only)
AppleCare+ Protection Plan
Avatalker AAC Augmentative and Alternative Communication Software app
Protective Case

To learn more about Avatalker AAC, please visit http://www.avatalkeraac.com.

iPad grant recipients, please use this link for helpful support resources from Apple in both English and Spanish.

We have very limited funding for this program. Every application is carefully reviewed and all information submitted is verified by NAA staff. This program is intended for families who are in dire need of financial assistance and are otherwise unable to attain access to these communication methods.

Give A Voice Applications are now being accepted.  Click here to learn more and apply.





Spring Means Autism Conferences! TACA's Autism Action Month Conference

TACA Conference 2022
TACA's Autism Action Month Conference is an entirely new offering for TACA families. This virtual opportunity will include presentations from experts, followed up with “take action workshops,” to help families implement what they learn. On the TACA Connect platform, families will be able to access resources, download presentation slides, and interact with other families going through the autism journey. Walk away with bite-sized action steps, a plan for your children, and the empowerment to act with confidence.

TACA's Autism Action Month Conference will feature 2 tracks of presentations from an incredible line-up of experts, covering all stages and aspects of the autism journey, including:

Featuring
2 tracks
Challening Behaviors
IEPs and Advocacy
Complex Medical Issues
Therapies
Legal Planning
Research
Life After High School
Communication & AAC

You’ll come away from the conference with new information, strategies, and resources to help maximize your child’s potential and improve their quality of life.  Click HERE to learn much more!


Autism Bites

4B4F060D-8211-46D3-A2E5-C8D93BDC7516Below is a Facebook status from an autism Mom I've known for many years. Her daughter lives in a residential home and her dental health has plummeted. You might have noticed over the years that many adults with special needs are missing teeth. It's easier to let them rot, and then extract them. However, there is no money for dental implants. My own daughter had a tooth extracted during a hospital based routine filling. I wanted to STRANGLE the dentist with unwaxed floss. He was so blase about it. My father was an orthodontist who practiced dentistry early in his 40 year career.  (Those are my baby teeth in the photo.) Teeth are important to me - and gum and tooth health is very important to overall health. Adult issues in autism revolve around basic healthcare and necessities. Poorly paid and poorly trained staff can blow off hygiene and no one is accountable. And even professionals, like the hygienist mentioned below can be disconnected from usable strategies. Until we all start demanding BETTER.

My bite is much worse than my bark.

###

Feeling very emotional.

Spent several hours this morning advocating for appropriate dental care for my 29 y/o daughter. I know that many of my fellow Warrior Mamas will be able to relate. Had multiple conversations with her dentist, nurse and dental hygienist. Two were very professional and helpful and one was not. She (the hygienist) suggested in a judgmental manner that I drive back and forth to my daughter’s home twice a day every day. Not only is that impractical; but, it would take 14 hours of time per week. I already brush XYZ’s teeth when I see her on Saturdays. She needs a professional cleaning due to severe tartar and plaque buildup along the gum line. The hygienist tried to tell me that this is normal! Part of the problem during the pandemic was a supply chain issue with the ketamine that Emily needs for sedation and the availability of her doctor to administer it.  Sadly, there are 50 individuals awaiting this kind of care and the dentist only performs these procedures on Friday afternoons.


The Power of Love Over Exhaustion

Nakita and daughterFamily is everywhere, right autism friends? I was on Instagram when a video reel caught my eye. A gorgeous woman helping her beloved daughter out of the house, into a shiny Mercedes and then to a chic boutique where they met up with Dad.  As a full time single parent/caregiver to my 3 daughters, who need similar assistance with tasks of daily... everything, the video brought tears to my eyes and I had to learn more.  Have you EVER heard of a Burnout Prevention Specialist? No, but man, you sure need one, right? Meet Nakita Nelson. I think we all need to get to know her - and how we can support each other when respite isn't a luxury, but a necessity to function.  Do you have any sort of respite? I am fortunate that my daughters have respite budgets, and I have a great team of helpers.  Overnights are tougher, to coordinate so many schedules. But I have managed to travel and get a break. It's DEElicious. I suppose my ex-husband is a respite provider, as the girls visit him at his girlfriend's house in New York every 3-4 weeks for a Saturday, Sunday night stay. It's better than a sharp stick in the eye, as my own Dad used to say.

I hope you can see the video below the jump so you can enjoy a few minutes of music and the uplifting prayer of love, acceptance and sacrifice.  I don't know if the lengthy embed code from Insta will work here - so here is a link to the video as well. You can find Nakita on Insta @NakitaNelson_

Continue reading "The Power of Love Over Exhaustion" »


Supplies & Support for Ukraine Families with Medically Fragile Children

A1A5711D-EDFB-49E8-8CF0-53D1137029F2I wanted to update readers on your generosity at work. Here’s a photo of some of the supplies we've sent to Dr. Theresa Cianciolo in Vermont for Ukrainian orphans and families with special needs children. Thank you! The Amazon wish list seems to work well, if you ignore the constant emails for other folks' joining and departure activity.  You can visit Theresa's website here. ScottandTheresa4UK

1) Click Amazon Ukraine List
2)Sign into the list
3) Add items to cart
4) Check out
5) Ship to SCOTT CIANCIOLO'S GIFT REGISTRY Irasburg VT
6) Pay


Here is an update from Theresa: We need your help. We are making a team to help individuals first of all get to a safe border, help to fill out visas (this is extremely important as we have many children who are medically fragile and have special needs). We need those individuals who have time to one on one get with a parent (most of the time Mom’s as Dads are fighting) and build a relationship, pray with them assist them with paperwork. What a wonderful opportunity to build those relationships. We continue to collect resources and I have so many to be thankful for some I have never met 🙂 future plans are for Scott and I to go out to Poland and Romania within the next 5 weeks (where we are supporting ministries taking children with special needs and their families) bringing those supplies and resources right to them. We also have items that we can get through the border of Poland directly to our ministry leaders who use their gifts to get them to military hospitals and for their communities as their currently are not pharmacies that are stocked. 

Email me at AutismAges@gmail.com. Thank you. Kim


Ready Set Learn Forever

Ready set learnOne of my daughters finds great comfort and joy in the TV shows she watched as a toddler and youngster. Every so often, she finds a way to tell me that she wants to find a certain program on YouTube. Yesterday, she was singing a song in her inimitable fashion. It took me a several listens to know what she was singing. From 1992 - 2008, The Learning Channel had early morning children's programming that they called "Ready, Set, Learn." The bumper  between shows when my daughter watched was an adorable cartoon about a penguin named Paz and his Mom. Shows included Skinnamarink TV, Jay Jay the Jet Plane (before CGI!) Hip Hop Harry, High 5, Peep and the Big Wide World (before PBS) and Pappyland. Pappyland was a local programming show from Syracuse, that found its way to the big leagues on TLC. Yesterday, my daughter was singing the Pappyland theme song. I found episodes on YouTube, and I only wish I could show you her JOY as she heard the theme song begin.  She sang at the top of her lungs, and stimmed, and smiled her beautiful smile. 

We all crave certain comforts, nostalgia is soothing. Is this what drives my daughter?  Is this when he neurological status fully changed - into autism - and she is stuck there? I don't know. I know that she is very happy. And I will be listening to this song for quite some time. I until I unravel the next mystery for her.

I'm sure some folks would tell me to extinguish this juvenile behavior and bring her forward. I will, just as soon as the Brady Bunch episode is over....XOX


Amazon Wish List for Ukrainian Children with Special Needs & Autism

THERESA UKRAINE CHILDNOTE:  Basic supplements & medical supplies needed urgently in Ukraine for children with autism and special needs. 

Here is an invitation to join the WISH LIST and the items will ship directly to Dr. Theresa and her husband Scott Cianciolo in Vermont.  I vouch for her - every tablet, gummy, item will go to Ukraine. 

1) Click Amazon Ukraine List
2)Sign into the list
3) Add items to cart
4) Check out
5) Ship to SCOTT CIANCIOLO'S GIFT REGISTRY Irasburg VT
6) Pay

  If you have issues, let me know at AutismAges@gmail.com. Thank you.


AMAZON UKRAINE LIST

Good morning. My dear friend Dr. Theresa Cianciolo (in photo) moved her family to Kyiv last year, to devote herself full time to helping the children of Ukraine - orphans with special needs and children with autism.  She and her husband Scott, a Pastor, adopted orphaned twin toddlers with  Down Syndrome & autism themselves.  They had moved to Kyiv last year and returned to the safety of Vermont a few weeks ago, as the danger escalated.

Theresa is going to Poland within the month, to bring much needed supplements, supplies and medications.  We're using an Amazon Wish List - that Theresa's team has compiled. Items ship to Vermont.  I realize not everyone is a fan of Amazon, but for expediency, this is our method of ordering.  Thanks.

This is something we can DO - so much more than being a keyboard cowboy or cowgirl.  For a few bucks - we can help a child get a good night's sleep, daily vitamins.


ABA Yay or Nay

Fire extinguisherSafeminds has featured a story from The Autism Society on the topic of Applied Behavior Analysis. ABA is controversial in many ways. Some families call it a godsend, others a nightmare. What has your experience been with ABA? For my family, I can say that since getting out of the school system where data collection was the  holy grail and rote, dead end tasks were considered learning goals, my daughters have THRIVED. I sought out a non-ABA based program for my youngest daughter's transition program. There's a team member who used to be at Bella's high school.  She did not recognize the happy, smiling, social young woman she knew from the frustrated young woman who had not 1 but 2 paras following her around data clicking 3 years ago.  ABA did not extinguished a single behavior in my daughters. Not one. They outgrew them with organic social instruction, and maturation.  Behaviors were communication phases. Behaviors were self-soothing coping skills - that I had no desire to trample. I had a private hire PhD behaviorist sit in many of my IEP meetings telling the high school team that ABA should be phased OUT through the school years because - and this is 100% true - the "real" world is not prompt based. Prompt dependent adults with autism have to unlearn and relearn how to manage skills that they have - but that are not readily accessible without prompting. Share your thoughts. Be kind. Be respectful. Be truthful.

###

Autism Society to Issue a Position Paper on the Topic

Applied Behavioral Analysis (ABA) has long been considered the “gold standard” of autism treatment. It is typically the first therapy recommended following a childhood diagnosis of autism. This is due to the large body of research to support its efficacy. Since 2019, all 50 states require insurance plans to cover autism therapy, specifically including ABA coverage. Many parents and ABA therapists view the therapy as a vehicle for reducing challenging behaviors, which could ultimately improve the quality of life for ABA participants. However, the therapy has increasingly faced growing opposition from people who participated in an ABA program during childhood. Consequently, while many view ABA as a godsend, others view it as an unethical and harmful therapy meant to normalize people with autism by hiding their identity and personality in order to conform to a neurotypical standard. Advocates for ABA feel that some of this current controversy stems from outdated practices such as the use of restraints or withholding food, which are no longer used and are now considered unethical. These advocates point out that newer ABA methods focus more on promoting a child’s self-direction and choice. The division over the way to view ABA is coming to a head this month as the Autism Society hosts three virtual town hall meetings to discuss the matter in preparation for a position paper on the treatment, which will be released later this year. The Autism Society’s town halls are designed for people in the autism community to share their experiences with ABA in a thoughtful and respectful way. But, in the meantime, the debate on ABA is likely to continue.  READ MORE AT SAFEMINDS


Life With Autism In Pictures But Banned on Facebook

Brandon 2022 1Note: Our friend Michelle Guppy has shared her journey with Brandon for many years. She has a raw, honest blog called Life With Autism In Pictures. Yesterday, she tried to post one of her blog entries on her Facebook page, and Facebook would not let her.  We're running an excerpt today, and hope you will click over to her blog to finish reading, and bookmark the site.  The crackdown on showcasing the often grim side of life for and with our loved ones with autism is depressing as heck. I couldn't even Tweet Tanner Welsh's obituary from AofA because Twitter now marks ALL of our Tweets as "sensitive."  I even Tweeted a Bundt cake - a sensitive Bundt cake.  But we all keep going - including Michelle and her family.

###

Life With Autism In Pictures Silent Surrender

In many ways, the last few months have been a series of Lemony Snicket's "A Series of Unfortunate Events"..... as well as the usual series of "unrecoverable's" as Todd so fondly calls the insanity of certain incidents we could never imagine in our "Life with Autism, Seizures, & a side of PANDAS"...

I have to chuckle at my ignorance...silly me...I thought the rules of life were that if you already have one lifelong challenge, you were somehow magically exempt from all other hardships that can happen in life. To say that I've felt suckerpunched is to say that "autism" is simply a "quirky behavior." Not many will get that, but those who do, deeply get it.

As I have desperately tried to navigate this unfamiliar and unwanted bump in the road so to speak - I am deeply grateful for the NDCQ motto that I have embraced thanks to being introduced to the Navy SEAL world of FORGED warriors and their NEVER QUIT mentality - not to mention the Survival, Evasion, Resistance, & Escape (SERE) training of Matt's Navy journey that began ten years ago...

"The Only Easy Day Was Yesterday" has been proven to be true in my life in so many ways..... except I might add, for warrior families like mine, there seem to be no easy days.........

(I mean really, don't we warrior moms wish upon wishes that our "Hell Week" lasted only a week?)

Which brings me to this picture I captured a few days ago while driving my son to his Adult Day Program...  Read more here.


A Letter to My Mother, All the Way In Heaven

Jenny  Flora Rose
Flora and Jenny Rose

Hello, dear readers. Today's post is a tribute to Gayle DeLong, by her oldest Jennifer Rose.  Gayle died on January 5 of 2022, after a battle with breast cancer. Jenny wrote a terrific book called "It's Not a Perfect World, But I'll Take It."  Surely this tribute is another chapter in the journey of a young adult with autism that no one wanted to write. Please join us in sending care and comfort to Jenny and her little sister Flora, who also has autism, and who may be struggling to understand the meaning of death and loss.  Their Dad, Jonathan Rose, has been a stalwart beacon of strength for Gayle and his daughters. Let's not forget him in our prayers. Jenny created a music playlist for her Mom - you can access it here.

###

By Jennifer Rose

Are you there, Mom? It’s me, Jenny. Man, oh man, I’ve got so much to say, and yet, I honestly have no idea what to say to you. Family photo 2021 Our relationship was…complicated, and while we’d sometimes fight as mother and daughter would, you were my mother and at the end of the day, I still loved you. No matter what happened, all I wanted was to see you happy. Of course, if Mama ain’t happy, ain’t nobody happy!

It hasn’t been 24 hours, and already I’m streaming a grief playlist in your honour. Right now, I’m streaming “Hey Jude” by the Beatles. Remember how impressed you were at Flora, our daughter/sister that she was listening to classical music along with watching Nick Jr? (Okay, we could do without about 1,000 plays of the tape of Paul McCartney as a drugged-out 50-year-old, but that’s another story.)

But enough about me. I loved you, because you took care of me from birth, and nursed me back to health when I was sick, and believe me, I was sick quite a bit! Because, hey, that’s what mothers do. And that’s not even getting to the time you got me into a trip to Israel, and all you said was “Isn’t there another trip?” when I was booted out of one trip. Seriously, even Grandpa said more words at my first birthday, and he all-too-well lived up to the stereotype of Jewish husbands not talking a lot.

Jennifer Rose bookSomedays I just feel like I want to quit, and just be normal for a bit. Then I realize that my family isn’t, and never will be, normal. But hey, we’re handling everything the best we can. Because you know what? We’re not normal. We’re much, much better than normal. We are resilient. And we’re so because we had you for a mother.

Through your work through the Children’s Health Defense, with the great Robert Kennedy Jr., you helped children have a bright, healthy future. To quote actress Jane Fonda, Robert Kennedy “has the gift of telling vivid stories that explain how and why power is made to yield.” He has used his gift to help countless lives, whether through his environmental or autism work. It’s only natural that such an amazing man would work with you, my equally amazing mother.

I’ll have to admit, like any 16-year-old girl, sometimes I could get self-conscious about how “pretty” my life was, but I was struggling to find myself in an environment that was either over- or under-whelming. As a child of two worlds, so to speak, neither severely handicapped nor high-functioning enough to pass as fully “neurotypical”, it was always hard for me to fit in. Feeling alone, I would often escape into my own fantasy worlds, whether through pop culture or my own imagination. Even today, I’m trying to “find myself.” But, I can reassure you, someday I will be found.

When I found out you were terminally sick this Christmas, all I wanted was for you to be well and happy. That’s why I pitched in with Dad to help however I could. Seriously, if Stephen Merchant- my favorite actor and comedian and current “special interest”- had come up to my doorstep for Christmas dinner with Dad and me, I would’ve turned it down if it meant you got better. Holidays like Mother’s Day & Christmas won’t be the same without you. You were an absolutely beautiful soul, and no matter what, you’ll always be my mother.


Support the New Poetic Justice Platform for Autistim Creativity & Communication

Lina Hjalmarsson LyonsNote: We introduced readers to Lina Hjalmarsson Lyons' new publishing platform for the autism community: PoeticJustice.press. Not the Moms and Dads and providers, but the boys and girls, men and women with autism who may prefer to be called autists or autistics or just by their names. Spelling has been a new road to success for many. Not all. But we have to promote and push and praise all progress.  All of it.  Lina is the daughter of author Helina Hjalmarsson and Skyhorse Publishing's Tony Lyons.  Please share her site widely.  Thank you.

###

Hello, I am Lina. So nice to meet you here. I am a nonspeaking speller. I am really smart and incredibly perceptive. I want to create a really lovely space for people who rarely find the right spoken words.

With Universal Enthusiasm,

Lina Hjalmarsson Lyons, Editor in Chief

Congratulations– you have arrived. We are looking forward to co-creating with you a community of rebels, creative minds, changemakers, pathfinders, nonspeakers, communicators, spellers. Visit the Blog page to peruse our online publication, meet us on the Rebellious Editors page, or become a contributor on the Submit Work/Contact Us page. Contributors are teenagers or young adults who use some form of assisted communication.

We intend for this site to be a place for spellers to publish their work as well as a forum for real social exchange. Let’s make full use of the comments section below each post to enter into a dialogue about our work and ourselves.

“HELPED are those who create anything at all, for they shall relive the thrill of their own conception, and realize a partnership in the creation of the Universe that keeps them responsible and cheerful.” Alice Walker, Helped Are Those


We Need a Little Christmas

Merry Christmas!



Haul out the holly
Put up the tree before my spirit falls again
Fill up the stocking
I may be rushing things, but deck the halls again now
For we need a little Christmas, right this very minute
Candles in the window, carols at the spinet
Yes, we need a little Christmas, right this very minute
Hasn't snowed a single flurry, but Santa dear we're in a hurry
Climb down the chimney
Turn on the brightest string of lights I've ever seen
Slice up the fruit cake
It's time we've hung some tinsel on the evergreen bough
For I've grown a little leaner, grown a little colder
Grown a little sadder, grown a little older
And I need a little angel sitting on my shoulder
Need a little Christmas now
For we need a little music, need a little laughter
Need a little singing ringing through the rafter
And we need a little snappy, happy ever after
We need a little Christmas now

Thankful Tuesday

Thank you donationI want to thank each and every donor during 2021, and especially during our matching gift campaign.  Your generosity in this tough year has bowled me over.  Our matching gift program launched with a large donation of cryptocurrency that opened a new revenue stream for us. Individual donations poured in throughout November and we blew away our goal with a final tally just over $11,000 PLUS Laura Hayes $5,000 matching gift. This means we enter our 15th year of publication going strong. Last Spring, I was very close to shutting us down as of January, 2022. AofA seemed superfluous. Then I realized, no way. We're needed now more than ever as kids age out into adulthood and COVID affects the globe with the architects we've been writing about for years. And we are, a family. One that I'll never divorce.  (Wink, wink.)  So THANK YOU!

It's giving Tuesday. If you would like to donate, please use our DONATE button (scroll down to the orange button) - it goes through Bank of America and is secure.  Send a check to Autism Age, PO Box 110546 Trumbull CT 06611. We can also accept Crypto through Coinbase, and other methods of capital gains, just email me, Kim Rossi at AutismAges@gmail.com

Kim, Mia, Gianna and Isabella


Lina Hjalmarsson Lyons Launches PoeticJustice.press for Non-Speakers

Lina Hjalmarsson LyonsAnnouncing PoeticJustice.press.

The beautiful apple does not fall far from the tree. Lina Hjalmarsson Lyons, daughter of writer Helena Hjalmarsson and Skyhorse Publisher Tony Lyons has launched a publishing platform for non-speaking teens and young adults. Please join us as we congratulate Lina on her new venture, and share the link PoeticJustice.press across ALL platforms.  Hello, Lina!

###

Hello, I am Lina. So nice to meet you here. I am a nonspeaking speller. I am really smart and incredibly perceptive. I want to create a really lovely space for people who rarely find the right spoken words.

With Universal Enthusiasm,

Lina Hjalmarsson Lyons, Editor in Chief

Congratulations– you have arrived. We are looking forward to co-creating with you a community of rebels, creative minds, changemakers, pathfinders, nonspeakers, communicators, spellers. Visit the Blog page to peruse our online publication, meet us on the Rebellious Editors page, or become a contributor on the Submit Work/Contact Us page. Contributors are teenagers or young adults who use some form of assisted communication.

We intend for this site to be a place for spellers to publish their work as well as a forum for real social exchange. Let’s make full use of the comments section below each post to enter into a dialogue about our work and ourselves.

You can find PoeticJustic.press here.

 


Autism: You See a Mess. We See Progress.

551B0344-3569-447E-B001-48146488D2D1I walked into the bathroom yesterday to this sight.

I don't have a dog.  I don't have a cat. I have three adult daughters with autism.

I squealed with delight.

Why?

Progress. I saw progress. An adult with autism was trying to be independent. A female adult. Think of the safety benefit when she masters this skill that most parents take for granted once their kids start school.

I see self-care. Self-defense. Progress. 

 


An Atrium Provides Sunlight. NAA's Atrium Provides Hope.

Autism atriumMany of us have been in the autism world for a very long time. My oldest is almost 27. Plenty of AofA readers have adult children with autism. That said, we have many younger readers who may be early on in their journey to help their child. The National Autism Association is one of the longest standing organizations that provides actionable information to families.  We launched Age of Autism at the 2007 NAA conference in Atlanta. Their "Autism Atrium" is a fantastic resource for webinars and more. The days of meeting up at the DAN! conferences are long over. And Covid has turned us into a Zoom world. This lack of connection has been detrimental for so many reasons. But here, in The Atrium, there is some sunlight. Check it out at the NAA site: 

###

NAA is proud to offer our Autism ATRIUM program.  This educational initiative for the autism community will provide a regular schedule of learning opportunities through free online webiNAArs, a digital library of downloadable toolkits, and a series of blog entries by experts in topics affecting individuals with autism and their families.

If you are interested in being a guest webiNAAr presenter, please click here to submit a proposal.  Thank you!

WebiNAAr Recordings
NAA’s WebiNAArs are recorded and archived on our website.
For free access to all recorded webiNAArs, please register here.

Recorded WebiNAArs:

Food Intolerances and the Gut Microbiome
Presented by:  Devin Houston, Ph.D

Autism & Bullying: What you need to know
Presented by:  Kerry Magro, Ph.D

Sensory Smart Strategies for Real-Life Challenges
Presented by:  Lindsey Biel, OTR/L

Navigating Autism for the Military Family
Presented by:  Tara Hood, NP, LLC

Autism and the Criminal Justice System
Presented by:  Carol S. Weinman, Esq.

Dozens more recordings are at the NAA website. Check them out!


Sixteen, School and a Silver Lining

Chuck and charlie 16Note: From time time we get a post written from the heart by a parent. Chuck Hancock has written for us in the past - he's a single Dad who takes great care of his son, who is turning 16.  When he writes about Charlie, he has a lovely sign off - "I am the luckiest." And we are lucky to hear from him on this, his son's 16th birthday.  Happy Birthday, Charlie! Kim

By Chuck Hancock

Seems like it has been more than three years since I submitted a contribution to Age of Autism. Last time was 2018. Before then 2016 and 2011. I read such profound and insightful submissions here, and not for a second do I think what I submit is even, remotely, in the same worldly realm (been watching a lot of Marvel movies recently) of interest and thoughtfulness of the pieces I read. I write mostly about "Dad Stuff."

Charlie, my son, is an autism spectrum kid. My only child. Being on this journey with him for all these years has, to the surprise of no one reading this, been filled with awesome highs and crazy lows. That said, I cannot for a second imagine living without him.

Charlie is 16 today. I think back to the day I turned sixteen and can vividly remember how things were. I had friends, drove a car, went to parties, played sports and had interests in girls. Charlie shares none of these things with me. He wants nothing more than to have friends. He struggles so socially. Breaks my heart. It is easy for me to be mad and angry about this. I battle this frequently. But then I breath, and pray (though likely not enough), and just try to get back to that place. That place we all are. That place where we Chuck and spider charliewould do ANYTHING for our children.

Navigating the education system over many years has been a challenge. Whatever "education" is these days. IEPs, occasional bullying, and just trying to find an environment for Charlie which he enjoys. Unlike many parent friends of mine with typical kids, his Mom and I are not perpetually fretting over his future. Colleges, careers, etc. A small blessing maybe.

Charlie, his Mom, and I all moved from Maryland to Florida last fall. Saw the writing on the proverbial wall. Big step. Divorced, we try our best to co-parent. Which included choosing a school. We picked a school here for Charlie to go to 9th grade. A very small, private school. Billing itself as one for children with "learning differences." Disaster. While he attended in person, not a good fit. While report cards showed A's and B's, I knew Charlie was not really benefiting from being in this school. Even there, sadly, there were some episodes of bullying. New kid at the school, etc. Just so hard to find a good fit when it comes to schools.

Continue reading "Sixteen, School and a Silver Lining" »


Sage Counsel from Chief White Eagle

311C7DCD-174A-495E-86E3-CA474884A94DSpeaking of Facebook... CT Mall Shooting: Facebook Can Shut Down News  I copied this from dear friend Sargent Goodchild of Active Healing this morning.  I so needed to read and remember that WE control our thoughts and our thoughts affect our health. The side effects can be good or  bad. Fear is a liar, vibrate higher.

###

Hopi Indian Chief White Eagle commented a few days ago on the current situation:

′′ This moment humanity is experiencing can be seen as a door or a hole. The decision to fall in the hole or walk through the door is up to you. If you consume the news 24 hours a day, with negative energy, constantly nervous, with pessimism, you will fall into this hole.

But if you take the opportunity to look at yourself, to rethink life and death, to take care of yourself and others, then you will walk through the portal.

Take care of your home, take care of your body. Connect with your spiritual home. When you take care of yourself, you take care of everyone at the same time.

Do not underestimate the spiritual dimension of this crisis. Take the perspective of an eagle that sees everything from above with a broader view. There is a social question in this crisis, but also a spiritual question. The two go hand in hand.

Without the social dimension we fall into fanaticism. Without the spiritual dimension, we fall into pessimism and futility.

Are you ready to face this crisis. Grab your toolbox and use all the tools at your disposal.

Learn resistance from the example of Indian and African peoples: we have been and are exterminated. But we never stopped singing, dancing, lighting a fire and rejoicing.

Don't feel guilty for feeling blessed in these troubled times. Being sad or angry doesn't help at all. Resistance is resistance through joy!

You have the right to be strong and positive. And there's no other way to do it than to maintain a beautiful, happy, bright posture.

Has nothing to do with alienation (ignorance of the world). It's a resistance strategy.

When we cross the threshold, we have a new worldview because we faced our fears and difficulties. This is all you can do now:

- Serenity in the storm

- Keep calm, pray everyday

- Make a habit of meeting the sacred everyday.

Show resistance through art, joy, trust and love.

Hopi Indian Chief White Eagle

Inserted July 9th 2021


National Autism Association 2021 Virtual Conference

5B7DBE10-E5A9-46A2-A6A8-94F23A2B47CA


If you've been wondering about Letterboard Communication, as chronicled in JB and Jamie Handley's book Understimated: An Autism Miracle,  Spell2Communicate's Elizabeth Voseller, MA will be a featured speaker.

REGISTER HERE!

The 2021 National Autism Conference will consist of 2 concurrent tracks.

You can view the Tracks HERE.

You must register for BOTH TRACKS via Zoom and will receive 2 unique Zoom links, one for each of the tracks. Use your 2 registration links to choose which track/presentation to watch live. Switch between tracks at any time. Your links are passcode protected and cannot be shared, as you can view from only one device at a time.

All presentations on both tracks will be recorded and made available to you soon after the conference, so you will have a chance to view anything you may have missed. Please note that NAA is not responsible for technical issues out of our control, for instance, corrupt video recordings, or internet connection issues. We will do our absolute best to make sure that all of our attendees have access to the conference content in its entirety.

 


United States Capitol Police Honor Those With Autism

66AF565D-9966-467D-BA7D-4AF467773BAF

So much of the news today is grim and worrisome. As a nation, we are at each other's throats because of sociopolitical change, Covid, election fall out and more. April is typically loaded with feel good autism stories. Some are maddening, others give us hope for the future.  This United States Capitol Police patch was created for Autism Action Month 2021. Here's the story of how I came in possession of this badge, because (say it with me) all roads lead to autism. I have had helpers for my three daughters over the years. One young woman joined our ragtag army when she was in college. Her older brother has autism, and attends the same day program as my two oldest daughters.  He's tall, handsome and has a smile that could light up the night sky. His sister came to us fully trained, because she had lived with autism all of her life. Fast forward four years, and she achieved her dream job - she was recruited to the United States Capitol Police force!  I watched her swearing in ceremony on Zoom last year. Her first months on the job have been harrowing, as you can imagine. She has seen two colleagues die, more than many police officers will see in a lifetime. But she's tough, dedicated and so ready to move up the ranks of the force. And she will be a strong voice for people with autism who may come into contact with the police.  That's something to salute.



Harris County Texas Sheriff's Department Honors and Helps People With Autism

Brandon Guppy BadgeMichelle Guppy shared this terrific story from the Harris County, Texas Sheriff's Department on Facebook yesterday.  Readers know Michelle from her blog From Hell to Hopeism, where she chronicles life with her adult son Brandon.

A Message from Sheriff Ed Gonzalez

During the month of April, hundreds of our sworn personnel will proudly wear a commemorative blue badge on their uniform that prominently features the autism awareness puzzle piece to bring attention to Autism Spectrum Disorder and to support those living with it.

We are in our communities across Harris County every day, and this is a small way to send a big message: We’re here to serve all residents with compassion and understanding. 

The distinctive light blue badge with the puzzle piece emblem and engraved words “Help Create a Kinder World” reinforces our promise to do all we can to improve our interactions with residents, including those with a developmental disability or those experiencing a mental health or emotional crisis. It serves as a reminder to residents of what we can accomplish together. 

This is the first year of the Blue Badges for Autism Awareness program and the Sheriff’s Office ordered 734 commemorative badges, more than any other law enforcement agency in the nation! 

According to the Center for Disease Control and Prevention, one in 54 children has autism. Just this year, deputies responded to more than 1,370 calls for service with a mental health component. Many of those calls involved a person with autism.

Last fall, we launched a new initiative called Project Guardian to help our deputies minimize stress by alerting them in advance that they’re about to interact with a person on the autism spectrum.

Continue reading "Harris County Texas Sheriff's Department Honors and Helps People With Autism" »


Blanket Dismissal of Assisted Autistic Communication Unwarranted.

UnderestimatedThis video below from about one year ago, based on a study Eye-tracking reveals agency in assisted autistic communication Vikram K Jaswal 1 , Allison Wayne 2 , Hudson Golino 2.

As JB Handley and his son Jamison's book debuts next month, many naysayers will appear, some seeming to gloat over the impossibility of success for our pre/non-low verbal children, whether tots, teens or over 21. If that sounds jaded, I suppose it is. We're rarely allowed to bask in success.  No other lifelong, life threatening diagnosis gets this treatment. I heard a rumor that a major national autism group is lobbying to change April from Autism Awareness month to Autism Acceptance month. Check out the book Underestimated: An Autism Miracle from Skyhorse today.

Abstract

About one-third of autistic people have limited ability to use speech. Some have learned to communicate by pointing to letters of the alphabet. But this method is controversial because it requires the assistance of another person-someone who holds a letterboard in front of users and so could theoretically cue them to point to particular letters. Indeed, some scientists have dismissed the possibility that any nonspeaking autistic person who communicates with assistance could be conveying their own thoughts. In the study reported here, we used head-mounted eye-tracking to investigate communicative agency in a sample of nine nonspeaking autistic letterboard users. We measured the speed and accuracy with which they looked at and pointed to letters as they responded to novel questions. Participants pointed to about one letter per second, rarely made spelling errors, and visually fixated most letters about half a second before pointing to them. Additionally, their response times reflected planning and production processes characteristic of fluent spelling in non-autistic typists. These findings render a cueing account of participants' performance unlikely: The speed, accuracy, timing, and visual fixation patterns suggest that participants pointed to letters they selected themselves, not letters they were directed to by the assistant. The blanket dismissal of assisted autistic communication is therefore unwarranted.

###


JB Handley Live Tonight! Underestimated No Longer

JB book event
Tonight! Monday, March 22, 2021 8:00pm Eastern Daylight time If you join the Facebook group of Dr. Teri and and Stu Warner, you can tune into a live interview with our favorite Batman of the autism warrior world, that would be Mr. JB Handley.   JB will share the story of his son Jamison, who has found his "voice" through Spelling2Communicate. 

Drs. Teri & Stu Warner and The Wellness Parenting Revolution


JB and Jamie Handley Underestimated No More

UnderestimatedAfter  more than a decade and half of treatments that failed to bring about the kind of progress Jamison Handley needed, one therapy cracked the code and imparted communication.  Think about how it must feel to be smart as a whip and yet thought of as intellectually disabled, with no way to output what's going on inside your brain. I recently heard the term "walking coma," referring to how people say that when they were in a coma, they could hear and understand everything around them, but were unable to respond. Is it any wonder at all so many of our kids are frustrated into action? Action that experts call "behavior."

Below is a review of JB and his son Jamison Handley's new book: Underestimated.

How a little-known therapy freed one teenager from autism’s prison of silence

March 15, 2021 (LifeSiteNews) — Every once in a while a story comes along that turns everything we know about something on its head. It throws a heap of understandable (but dead-wrong) assumptions and a vast library of science — thousands of psychology and medical papers — on a burn pile, and it reveals to us something utterly astonishing.

Underestimated, the book by J.B. Handley and his son Jamison, to be released by Skyhorse Publishing on March 23, is one such watershed. It is a true story that will eventually change the world of autism; the research, the medicine, the therapies, the day-to-day lives of many families — but especially, hopefully, the lives of millions of autistic children and adults. In doing so, it is not an overstatement to say that this book may just change the world. 

The hero of the story is Jamison (Jamie) — a 17-year-old nonverbal autist who is so severely affected by his disability that he’s been relegated to a “life skills” class where the focus is on teaching him to do his laundry and use a debit card and keeping him from injuring himself. His life is a tragedy to all the world, except for a few.

Jamie’s father, J.B., is one of those few. Jamie is his tragedy, and he is bent on finding his boy inside the head-banging, “stimming” teen who seems absent most of the time, vacantly tearing leaves into small bits in peaceful moments and wildly biting his arm and wailing at times for reasons that no one understands.  Read more at LifeSiteNews.

 

Autism Means 24/7/365 Love....and Exhaustion

BFEB198F-83DF-44D0-9A0F-B1067374904ENote: Michelle Guppy posted this yesterday, on FaceBook, and I asked if I could share it here. The meaning of love changes as we grow up - old. For so many of us who are full time caretakers of our adult children with autism, love means an intense workload and exhaustion. Maybe that's a dirty secret I'm not supposed to share. Keeping my mouth shut has never been my strong suit. Michelle  has a strong partner in her husband. Thank goodness, because her handsome son is a strapping fully grown man with seizures and behaviors. Some of us are single parents.  My daughters' Dad sees them one weekend a month, kind of like ROTC without the push ups. Or as I told Gianna, like her period. (There's the mouth!) No matter the home set up, we are ALL wiped out at the end of the day. And we do this work with love, respect and a quiet determination so that our kids, toddler or teen, shorty or forty, will always remember that they had a Mom who loved them forever, liked them for always. As long as WE are living, our babies they'll be.

###

What Valentine's Day has come to mean to me since "Life with Autism, Seizures, & a side of PANDAS"

I love how on each Valentine's Day until such time as Brandon is healed, I get to be reminded of what true, unconditional love is.

We went to court for Guardianship of Brandon on Valentine's Day of 2012...

On each Valentine's Day, I have his annual Guardianship update paperwork to fill out and submit. You have to submit that paperwork each year on the Anniversary of when Guardianship was Granted...

On Valentine's Day of 2012 Todd and I appeared in Harris County Court before a Judge to show the ultimate act of love for our son...

In swearing to care for and advocate for him as guardians.

To give our all to him in that way, meant that more often than not, there would be nothing left for us. Physically, Emotionally, Mentally, and most of all --- FINANCIALLY.

Guardianship - does not come with provision.

So many Valentine's Day gifts this week in white tents in parking lots full of the worlds view of "love" -- in things you can buy and give. Love isn't in those things at all. It is in what can't be bought and in what is given unconditionally. It is in doing something for someone who can never repay you. Love is a commitment to your son who cannot read, write, or talk, that you will advocate and protect his rights above all else. Love is being up all night, for 26 years and counting, with few exceptions. It is having traveled to so many doctors you lost count and doing anything you could to help. It is the determination in forging a path where there was none. Knowing that path would help others, though not necessarily you or your son. It is being bitten and bearing those scars. It is in the wretchedness of having to watch seizure upon seizure and not being able to stop them. It is in every cell in your mother's heart crying out in pain at the helplessness of it all. It is in constantly making the choices for him, not you, not your spouse, not your marriage. It is the financial, emotional, mental, & physical sacrifices you make for him each and every day. I say that last part again because it's worth repeating. The toll financially, emotionally, mentally, & physically is beyond imaginable. Borderline unsurvivable.

Continue reading "Autism Means 24/7/365 Love....and Exhaustion" »


"It Makes Me Feel Like A Grown Up" Dignified Housing In Connecticut

White picket fence my ideal home.jpg1Note:  THIS article brings us great joy! For years, many of us have been thinking about how and where our adult children with autism and other diagnoses will live. It's "easy" to say they will live us forever. It sounds good. It makes us feel good. But is it best for our kids? Hear me out. Look at Nick Sinacori's statement, "It makes me feel like a grown up."  He's 26. He is a man. This might be the first time he has ever felt like something other than "someone's son." I've been thinking about how Autism Age, our formal name, can work on housing ideas here in Connecticut. Our state is very expensive. A newer two bedroom apartment in my area will cost a minimum of $2300 a month. SSI is around $800.  Add $194 in food benefits and you're still unable to afford average housing here.  For many, congregate living in not an option due to noise, sleep habits, and behaviors. I am always looking for people who have ideas and knowledge about grants, fund raising and how we can create models that work - for the men and women we call..... our children. 

###


For nearly 20 developmentally disabled young people, the new Bear Woods apartments in Canton offer their first chance to live outside their families’ homes.

“I feel really good to be here — it makes me feel like a grownup,” said Nick Sinacori, 26, who until now has had to live with his parents at their house in Simsbury.

From the outside Bear Woods looks much like any other newly built apartment complex, but officials at Favarh believe it’s a model that could transform housing for the developmentally disabled.

They’re opening a similar complex in Bloomfield this summer for middle-aged and older tenants, and are hearing from other organizations for the developmentally disabled inquiring about the logistics, financing and day-to-day operations. Read more at the Hartford Courant.


The Needle of Justice: By Shirley Blaier-Stein

The Needle of JusticeIt's a blizzardy morning here in Connecticut and much of Mid-Atlantic and NorthEast. How about a cup of coffee or tea and FREE chapter of a The Needle of Justice, a new book from the sharp legal mind of lawyer/autism Mom Shirley Blaier-Stein? Shirley lived here in Connecticut for many years. She's a warrior Mom who returned to Israel when her husband was appointed to the Supreme Court. The timing of the novel with the novel virus is perfect.  Click HERE to download a FREE first chapter!

###

Maya Stone, an autism mom from Fairview, Connecticut, dealing with her son Ben’s day-to-day hardship, observes in horror how the number of children affected by neurological disorders in the United States is rising exponentially and nobody can explain why. Maya, who used to practice law, comes up with a legal theory that turns into a class action involving many families in order to expose the truth behind the suffering of so many children. How far would the defendants go to protect their multimillion-dollar enterprise? Would Maya’s son stay safe? How will the needle of justice turn?


We Made Our Match!

Beverly Hillbillies colorA big thank you to everyone for helping us meet our $5,000 matching gift donor campaign!I have no plans to install an Age of Autism cee-ment pond here in our Connecticut "headquarters," but I can promise you that 10 grand is black gold and Texas tea toward keeping us up and running in 2021.  Letters and emails with IRS info are forthcoming.  What a year, eh?  We'll continue to follow Covid, the big V topic that gets us in so much trouble and cost us our ability to keep most sponsors (always thank you to Jennifer Larsen and The Holland Center for their unwavering support), and of course, first, last and always the AGEING of autism. We will never forget Dan Olmsted's mission.

Thank you so very much to Laura Hayes for her generous match. And if anyone one cares to start a match of their own - let me know!

With great affection,

Kim


As Autism Ages - Join Our Giving Tuesday Matching Gift Program

Heart that givesWe aren't there yet with a few hours to go for our matching gift from Laura Hayes!!!  Use our Bank of America secure merchant system or send a good old fashioned paper check to Autism Age PO Box 110546 Trumbull, CT 06611. $5,000 matched is a lot of money to help keep AofA going into 2021. We are a "postcard" non-profit according to the IRS. That's a polite way of saying "elfin" money-wise. Or "kitchen table." We're a small business. Mom and... well, there's just Mom now, but you get the point. We have work to do in 2021 to support autism families. And with your help? We'll do it!

THANK YOU!  Kim Rossi Managing Editor, Mom, Tired....  DONATE!


And The Tree Was.... Happy?

C621301B-DDA7-409B-88ED-F80529BE992AAre you familiar with Shel Silverstein’s classic book called “The Giving Tree”? This photo popped up in my Facebook memories yesterday.  I signed a copy of this book on Christmas, 1995 as a gift for my first born daughter.  I knew that I would give anything and everything I could to her. I did not know that autism would mean I would have to give quite so much, maybe even down to a stump.

I have seen so many social media posts from families really struggling during this COVID culture. Violence at home. Children from young to adult having dangerous behaviors as as a result of the tumultuous changes. The losses.  Suffering depression. Malaise. Loss of skills.

We try to cover many topics on AofA, but I always want to return to our heart and soul. The men and women, mothers and fathers, the children facing the unfathomable and ever changing challenges of life and autism.  So I ask you, HOW ARE YOU DOING?  For real. Not the stuff we tell our families and friends so as to keep the conversation light. What are your needs right now? How can we help each other.  Leave your comments. Use your name or not - if you need anonymity, we understand. If you are really in need, email me personally at KimRossi1111@gmail.com and I'll try to connect you with help.

Some days I am indeed ground right down to a stump with the work required to take care of every aspect of life for three beautiful ladies with autism. That said.... I AM happy. Not the happy I imagined as I held my daughter almost 26 years ago as a young wife. But happy nonetheless. I'd love to hear from you. Let me know.



Be Courageous! New Video on Global Unity for Health Freedom in the Era of COVID

6DE55863-7818-4593-A803-5A262EAD9C90
Age of Autism is proud to present an urgent COVID-era UNIFIED message from dozens of organizations and nations who are fighting for your health and your medical freedom.  You'll see many familiar faces -  including our own Mark Blaxill and me. As we say in the video "BE COURAGEOUS" - share this video. I suggest we all screen record it as well, in case VIMEO pulls it down.

https://vimeo.com/457783711

Unity Video from bburrowes on Vimeo

Organizations in Unity:

Children’s Health Defense
The Institute for Pure and Applied Knowledge 
The Bolen Report
GreenMedInfo
Autism Action Network
DeMoss Chiropractic
California Jam
Health Choice 4 Action

Continue reading "Be Courageous! New Video on Global Unity for Health Freedom in the Era of COVID" »


Autism Caption Contest

C8C41C29-E047-47E3-A001-2A0CFF7BD115
Posted with permission from Michelle Guppy.  Many of you will recognize her handsome son, 20-something Brandon, who is wracked with seizures and autism. Go ahead and provide a caption. The playhouse is for Michelle's darling grandson, her Grandfishy. But she snapped this photo and well, I had to ask if we could share it and she generously said, "yes."  I was reminded of the old Tom Hanks movie "Big," when he jumped into top of the the bunk bed after his date. But there is no Zoltan machine to change the past for Brandon or any of our adult children with autism.


Be part of a Parenting Special for Transmission Times:

Radio micNote: Katie Semro is an AofA reader and she's has a project we'd like to share with you.

###

I'm Katie Semro, and for the last 13 weeks I’ve been making the podcast Transmission Times  using audio diaries from people around the world. I'm planning on creating a special episode featuring parents and soon-to-be-parents talking about their experiences of the pandemic. Would you be willing to add your voice to the project? 

All you need to do is record your answers to the questions below on a smartphone and email them to me, or call 847-354-4163 and leave a voicemail.  Deadline is July 10! 

  • Describe your best moment with your kids?
  • What was your worst moment?
  • What happened that you didn’t expect?
  • What do you want to remember from this time?

The details:

When you record please include the date and where you live, including your name is optional. Apps like Voice Memos for iPhone and ARS - or similar - for android work well. Then email the recording to me at ksemro@gmail.com — this can usually be done right from the app. Or call 847-354-4163 and leave your answers as a voicemail. 

The recordings can be as long or short as you want. Typically people record for 2 -5 minutes. Don’t worry about mistakes I will edit these out, just speak from the heart. 

I hope to collect a lot of responases and will fit as many as I can into the podcast. All of the replies will be saved in the Transmission Times Archive to document this time for future generations. 

Thank you so much for participating in the project! 

If you have any questions, technical or otherwise, please let me know! 

Independent Audio Producer
Transmission Times: Audio Diaries During COVID-19
This Paleo Life


Insider Look at Autism and Aggressive Destruction of Property

B249F6DD-BBE0-4873-9C1D-33654FC3876B Below is an excerpt from a blog called Thinking Autism Guide.  Please note: the article might not use the same type of person centered language that you or I use.  That said, I have a loved one with autism who just yesterday shattered the last of our cereal bowls on the granite countertop.  During a ride in our minivan, I was worried she would break the window with her pounding palm. At dinner, the noise of her banging her hand on the table frightened her sisters (also with autism) away from the meal. I found the information useful. 

###

When Autistic Kids Destroy Things

Sometimes autistic kids, and the adults they grow up to be, are really hard on physical things. Sometimes they consistently break devices or furniture, or take them apart. What many frustrated parents and caregivers may not understand is that there is usually a reason behind these urges; it's not just random autistic behavior. And if parents can try to figure out why their children have these needs, and then accommodate them as much as they can, everyone can have a much easier time. Not always, but in many cases.

With this in mind, we talked to two advocates with both personal and professional experience in this area: Ivanova Smith, and Aiyana Bailin. Here's what they had to say; we hope it is helpful to you.
 
Thinking Person's Guide to Autism: Tell us a little bit about yourselves
 
Ivanova Smith: I am a self advocate leader in Washington State. I am Chair of Self Advocates in Leadership, and Member of People First of Washington. 
 
Aiyana Bailin: I've been a respite care worker for over seven years. I've worked with kids and young adults with various developmental disabilities (Down syndrome, cerebral palsy, etc.), but I specialize in "severe" autism. Or rather, I prefer "profoundly autistic clients," because we generally get along really well. I'm probably on the spectrum, but have never tried to get diagnosed.
 
TPGA: When you see parents complain about autistic children or youths destroying furniture or other household objects, how does that make you feel?
 
Ivanova: When I see the media complaining about autistic people it makes me feel sad. I also think it is not an effective way of helping the situation. There are ways to work with autistic people that help, but that do not stop autistic people from having freedom of experience. 
 
Aiyana: I don't have a general answer to this. There are a lot of factors—tone, intended audience, etc. But often, I think parents need to be more careful about how they discuss their autistic (or otherwise disabled) kids. These kids already feel like they cause their parents a lot of stress, and they can be very sensitive about it.
 
TPGA: What do you think makes some autistic children need to take things apart? 
 
Ivanova: For many autistic people, we do not only have sensory experiences that are negative. Lots of autistics, especially those with intellectual disabilities, and/or who are non-speaking, also sensory seek. Sensory seeking is when the autistic person seeks out a sensory stimulus. Stimming is actually a form of this. 
 
Staring at certain objects and taking them apart is stimulating. Have you ever taken a pen apart? For me I really like lights and water, I like touching fountains, water, and feeling water move. 
 
Lots of times autistics need to avoid sudden sensory things, but can also seek out sensory things. Autistic people need understanding for both sensory issues, and sensory seeking. It is important to allow autistics to sensory seek. It as important as allowing us to stim. 
 
TPGA: Do you have ideas for how parents might be able to help those children?
 
Ivanova: I understand that property damage can be frustrating. I know my family struggled with it when I didn’t understand. I wore out the lazy boy armchairs because of my intense rocking. It would been helpful to have armchairs that were adapted for autistics who wear things out.

Continue reading "Insider Look at Autism and Aggressive Destruction of Property" »


AUTISM in the Time of COVID: Guilt, Histories, and the Village

Barb and Dan 2
Source, Barbara's FB 10/19

Note:  I met Barbara Fischkin at my very first public speaking event in New York City a dozen or so years ago.  She is an accomplished author,  and was a successful journalist who traveled the world for her career. I consider her a friend and mentor. Her adult son Daniel has been in his New York Group home since the quarantine began.  Like many group homes, Dan's been denied all visits, even from Mom or Dad. Her son contracted COVID and recovered. She has been able to have curb distance visits. This is happening all over the country, maybe the world. People with autism cut off from their loved ones. I can't imagine anyone being able to explain to my three daughters why I am not there for them. My once, twice, thrice broken heart couldn't take knowing they were worried I'd never return, or worse starting to forget me.

Below is an excerpt from a magnificent narrative non-fiction essay she has written about this time and our autism family.  Never forget, no matter how we ended up here, how we have treated autism, educated our children, housed them - all of it - at the end of the day, we are the autism family.  Take the time to savor her style, her wit, her honesty, her emotion. Enjoy.  Kim

Barbara Fischkin is the author of three books of narrative nonfiction and satiric fiction and is currently writing an autism-related historical novel titled The Digger Resistance, some of it set in what was once an Eastern European shtetl. She holds an interdisciplinary Master of Liberal Studies Degree in “Autism Past and Present,” is a writer for City University of New York’s Office of Communications and Marketing, and is a member of the CUNY Disability Scholars Group. As an international journalist, Fischkin covered stories in Latin America, Asia, and Europe and wrote for major publications including Newsday, where she was on staff, the New Yorker, and the New York Times, among many others.
.
AUTISM in the Time of COVID: Guilt, Histories, and the Village

Kim

By Barbara Fischkin

GUILT

The Covid test for my son came back positive. Great, I told myself, first you gave him autism, now the plague. Dan, 32, has been unable to speak since he was three and a half, a rare case of Childhood Disintegrative Disorder. Doctors told my husband and me to expect the worst. This, they said, was as severe as it gets on the autism spectrum. The worst did not happen. As an adult, Dan has an active life. Still, he is far from cured. Due to his lack of speech and other disability-related deficits, he cannot live by himself or go anywhere alone. He lived with us until he was 22 and then moved to a nearby group home. It is a beautiful, well-furnished house and he has his own large room. Still, it is a group home. I do not know what happened to our once normal child; nobody does. As the spectrum itself grows, it becomes more confounding. For me, maternal guilt comes with the territory and it is irrational. I am still haunted by the long-debunked theory that “refrigerator mothers” cause autism. In my case this is beyond ridiculous. Friends, relatives, and colleagues—and my husband in particular—claim I have an overabundance of warmth, enthusiasm, and passion and, if anything, could tone it down a bit. Still, on bad days the dark side of my brain imagines Bruno Bettelheim, the most famous purveyor of the “refrigerator mother” autism myth, rising from his cremated ashes to crown me the world’s foremost ice queen.

I think: I should have worked less after he was born? Should I not have moved him from one country to another when he was just a toddler? I was a journalist and a writer. But I took him with me. On interviews in Mexico City, to Guatemala to interview orphans, to Panama, Thailand, and the Philippines to catch up to his foreign correspondent father. He rode in a baby backpack and played with my hair. I took him—and a nanny he loved—to a North Carolina writing workshop, because two weeks was too long a separation. Doesn’t this exemplify a warm mother?

I should have played more games with him. Did we have enough puzzles? Too many? I read to him every night, didn’t I? Goodnight MoonThe Very Hungry Caterpillar. The Philharmonic Gets Dressed. You name it, I read it. 

I breast fed Dan. Or am I imagining this?

Could a mother imagine she did such a thing, when she did not? I do not think so. But when it is almost 30 years since your child fell apart and you still don’t know why, such thoughts continue to flow. And so, it came as no surprise to me—or others—that when Dan tested positive for the novel Coronavirus, I was sure I had given this to him, too. I based this on circumstantial evidence which would be mortifying, if it weren’t so funny. In the worst of times, and in our memories of them, humans crave humor. If we didn’t, the Holocaust movie Life is Beautiful would not have won three Academy Awards. 

So here goes: I was sure I gave Dan the virus because I had my eyelashes dyed. 

The woman who does this for me—as she tells great stories about waxing the legs of Lillian Hellman and Beverly Sills—tested positive after my last appointment with her on March 4. New York was still wide open then. She was so sick that she wondered if she was down for the count. I didn’t find out until she revived and after I had spent a day with my son. If I had known, I would not have seen him. This anti-mantra flowed through my brain, until I convinced myself I could push it aside by a list of other ways Dan could have been infected. Three of his group home housemates had it. Did they give it to him? Or he to them? Staff came in and out. My husband and I rode the Long Island Rail Road in early March. We walked and biked the crowded boardwalk in Long Beach on Long Island, where we live. This is the nobody knows virus. Dr. Peter Piot, the director of the London School of Hygiene and Tropical Medicine described in the New York Times on May 26 as a “legend in the battle against Ebola and Aids,” does not know where he got Covid-19.

Dan appears to be healthy now. He has been symptom-free for weeks. He has, ahead of time, lost the 20 pounds he usually sheds in summer when he surfs the ocean. He looks like himself again, tall and solid, fashionably balding with a Roman profile. There do not seem to be any Covid after-effects, as many others—including Piot—report. But. . . can a mother tell such a thing from a distance of six feet? As I finish writing this on June 1, I have not been able to touch my son or even stand in the same indoor room with him since March 17. Seventy-six days. After 49 days, my husband and I were permitted curbside visits with him. It is as if our son were a restaurant permitted to offer take-out, but not delivery. Neither one of us has ever not seen him for this long, even in those vintage traveling days.

Continue reading "AUTISM in the Time of COVID: Guilt, Histories, and the Village" »


COVID-19 Kills Top School for Autism

We rise by lifting othersHi, friends. Kim here. Yesterday, I received an email that my youngest daughter's school will be closing its doors for good on June 30th, after 28 years serving students with autism and other severe diagnoses. She was only there for one year, her first transition year post 18.  But they treated Bella like family from day one. She had two more years to go. She has made so much progress there.  For the first time in her 19 years, she is communicating with us. Telling us what she thinks and needs and wants - via assistive tech. The other day, she "said," "I don't want to..."  Can you imagine a life of never being able to express yourself?  She had a dream team of teachers and therapists.  Imagine if Michael Jordan, Tom Brady, Wayne Gretsky, Arnold Palmer and Alex Rodriguez came together with their talent and expertise and heart. And success rate. That was Bella's school.

Poof.

Teachers. Fired.

Therapists. Fired.

Staff. Fired.

Students. Fired.

COVID-19 will be killing more than people. It will kill dreams. But it will NOT kill our future.

I told my daughter's teacher, who had the honor and decency to call me right away, with tragedy comes opportunity.  We will create something new. Bright. Good. Whole. Sustainable. Somehow.

I can't write much else about this. I'm reeling. Truly.

COVID-19 just deep sixed one of the best schools for autism the nation has ever had.

STILL I RISE - By Maya Angelou

You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I'll rise.
 
Does my sassiness upset you?
Why are you beset with gloom?
’Cause I walk like I've got oil wells
Pumping in my living room.
 
Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I'll rise.

Continue reading "COVID-19 Kills Top School for Autism" »


It's Giving Tuesday A Global Campaign of Support

Giving tuesday
Thanks to Cathy Jameson for creating this art and updating me that it's Giving Tuesday! This is a day to support organizations making a difference in your life and the lives of others. If you would like to donate to AofA, you can send a check or use our DONATE link on our sidebar (or in our menu on mobile devices.) We use merchant services through Bank of America for a secure transaction.  When you use this, I do NOT see your address - only your email address.  If you send me your snail mail address, I'll send you a thank you letter with a bottle of hand sanitizer - signed as a bit of humor.  I'll wear gloves and I promise not to lick the envelope!   If you donated recently - thank you. I'm 1000 years behind on sending my thank you letters, but I will.  Thanks! Stay well. Kim

Autism Age
PO Box 110546
Trumbull CT 06611


Joanie Calem On Her Son's Journey in Art School with Autism

Joanie calemNote: Thanks to Joanie Calem for introducing me to her writing, so that I can introduce you, our readers. This post below is the perfect piece to run now that April and Autism Awareness Month is over.  Although Covid overshadowed the month of blue, for sure. Joanie writes reality. Below you'll read how her son was put on probation at an art school - because of his autistic traits and coping mechanisms.  Thank you to the neurodiversity movement and the mainstream media's deep desire to pretend autism is simply like hair or eye color.  It's not. 

Joanie is a folk musician with lots of music to share along with her insights as an autism parent. I know you'll enjoy her work.

Visit JoanieCalem.com

###

A person’s right to fully participate in all aspects of society….

Shepherding children to adulthood is a bit of a whirlwind. The school years are often one long race from morning ‘til night. But as any parent of both a neurotypical child and a child with autism can testify, there is great variance in the nature of whirlwinds… both my husband and I realized early on that our parenting style changes dramatically depending on which offspring we are with at any given moment.

Just a mundane example: Looking back at the 13 years that our neurotypical daughter, who is now 26, was in school, we dutifully appeared for the standard parent-teacher conferences and events where her teachers heaped praise on her. In contrast, during the 16 years that our son, who has autism and is now 24, was in school, we were there for IEP meetings multiple times per year for ongoing consultations with teachers and administrators multiple times per year, disciplinary meetings, emergency meetings, negotiations about behavior plans, and then of course those same parent-teacher meetings and events. Vive la différence! I was a virtual stranger to my daughter’s educators; I was a regular installation for my son’s.

I began my teaching career before I had children. I loved learning about the theory of multiple intelligences and different learning styles and used this information regularly as a music teacher. This background in education and child development certainly helped in parenting as well. As a disability advocate now, I often run into parents who honestly don’t know that their children’s development is different than what it should b, because they are not in a field that requires that knowledge. Having a background in education helped me identify early on that our son was wired differently, and that all those big books about the stages of child development did not actually apply. I knew we were in foreign territory, and I knew that I didn’t know what to do.

Continue reading "Joanie Calem On Her Son's Journey in Art School with Autism" »


Support Age of Autism With Amazon Smile This Valentine's Day

Amazon smile Twitter

Will you be our Valentine? Shop at smile.amazon.com and AmazonSmile donates to Age of Autism at no cost to you! And think  how HAPPY Jeff Bezos will be to send us a donation? LOL!  KIM

Amazon not your style? We are donor supported and you can send a check to:

Autism Age
PO Box 110546
Trumbull CT 06611

Or use the donor button link to secure donating through Merchant Services and Bank of America.

Thanks!


Score one for the GOOD Guys! Pizza Inn in South Carolina Defends Worker with Autism.

Heart pizzaNote: The media, social and anti-social is so full of anger, vitriol, friendship lost over politics,, over bodily autonomy that this story made my day. I'm 100% New Englander. A Yankee (from Red Sox Nation.) A NAWTHerner....   I was hoping Amanda Cartagine of Pizza Inn would give the culprit a good old fashioned Southern "bless his heart....."  :)  Sometimes it does take uno villagio. Thanks to her for her generous spirit. You can visit her website here!

###

By Jocelyn Neo, The Epoch Times

A customer complained to the owner of a Pizza Inn in South Carolina about an employee with autism in the fall of 2018 and asked her to hang a sign to caution the patrons. Respecting good business ethics, the owner heeded the suggestion of the customer but did so in a way to emphasize a different point—and she did it in a style worth appreciating. The sign read:

“We are proud to be an equal opportunity employer and hire all of God’s children.”

Amanda Cartagine owns the Pizza Inn on Woodruff Road in Greenville. The restaurant seems like any other fast food outlet, but there’s one notable thing that makes the place one of a kind—out of the crew of 16 employees, 10 have special needs.

“These are like my kids, and it made me angry,” Cartagine told WYFF. “I wanted to do something that was not rude, but got my point across.”  READ MORE HERE.


Celebrating an Electric Yule Log Christmas

Christmas_angel-3By Kim Rossi

When I was a child, I used to visit my auntie and uncle in Florida (pronounced FLAH-ridder in Massachusetts, my home state) during winter break. They had an electric log fireplace that crackled as a rotating something or other made of foil slowly turned to mimic fire. It mesmerized me. As I was looking for an interesting Yule Log for today's Christmas post, I found this 1 minute look at the same fireplace.

It got me to thinking that many of us celebrate an electric yule log holiday because of autism. It's not really a log that burns and sends forth heat. Not at all. In Florida, it was considered a magical version of a real fireplace, a fireplace they could not have. Ah.

I hope you and your family have an electric yule log Christmas. Not the imagined perfection of a Currier and Ives card. Not Christmas girlsthe reality that families whose kids grow up typical and move past Sesame Street and Thomas to college and careers and giving you grandchildren. That is not to be for me. Maybe not for you. But.... my 3 beautiful daughters are happy and smiling. They love the holiday because I make it special for them, exactly they way they need it to be special. A plastic ukulele that lights up when you strum it under the tree.  Beads that make a delicious sound when they shake and feel like comfort in a 19 year old's hands.  A fresh pink sweatshirt. These are the things my girls want. And so that it was SantaKim brought.

Merry Christmas. God bless us. Every one.

Love, Kim and all of us at Age of Autism.


December Donation Days to Age of Autism

Thank you typeDecember is an important month for non-profits like Autism Age. We're tiny. Elfin even. And we rely on donor support. Many of you have donated during the year. And a few of you make monthly donations that warm my heart. As censorship rolls across social media, we're more important than ever. In my humble opinion.  I feel a deep obligation to Dan's memory to keep AofA alive and well.  I'm grateful to all of our readers, commenters and donors. THANK YOU.

There are several ways to support us:

1) Amazon Smile: Shop and we earn a percent!  Won't Jeff Bezos be thrilled?  When you shop December deals at AmazonSmile donates to Age of Autism! Remember, you have to log into SMILE.AMAZON.com to get into the donor version of the site.

2) Bank of America merchant services donation. Safe. Secure. You can use our donor button on the right sidebar or at this link if you're on a device.

3) Network for Good

4) Send a good old fashioned check!

Autism Age
PO Box 110546
Trumbull, CT 06611


Support Age of Autism with Amazon Smile's Cyber Monday!

Cyber Monday
When you shop Cyber Monday deals at smile.amazon.com/ch/47-1831987, AmazonSmile donates to Age of Autism at no cost to you!   Perhaps buy a book about censorship?  Won't Jeff Bezos be THRILLED to help support our work? LOL!  Happy shopping! 

REMEMBER: You MUST go to the SMILE.AMAZON site to register us as your charity, so please use link above.  And you can change charities too. Donate to us for one order, and choose one of our friends for the next order.

Thank you! Kim


Autism Community: "One Day We’ll Die and What We’re Doing About It" (Sugey One)

Rosie Rich EBy Richard Everts

So, yes, for many of us, with some luck we’re going to get really old, our kids that require almost 24/7 caretaking will be ok, and we’ll outlive them by a day or two. Or, maybe not. Either way, we’re going to need help, and we have a partial solution we’re building for ourselves that many of you, my readers, might be interested to know more about. Jump to the end if you want to find out how to connect directly. You may know my wife and I from our 2014 Oscar qualified film The United States of Autism, which has now played in over 75 countries, and many thousands every year still stream it around the world. We donated a large portion of every local screening proceeds from the showings, we battled congressman and senators in Q&A’s, and we donated copies to many libraries around America, all on almost no budget. But despite all that impact, we came to understand in our own personal life, if we want our son to live the most comfortable life by aging in place, how are we going to accomplish this as we become older and may need help ourselves? So, we sat down and listed out all the things we would need help with as we age.

The Real Problems We Face

Know where he is day or night (help with wandering). Check. Daily living reminders Rosie (executive function) for getting dressed, toiletries, medicine, eating, sleeping. Check. Complete privacy so no one at Amazon, Facebook, Comcast, Google, or anywhere else can hack in and see what goes on in my home. Check. Then, it got really complex. Preparing food. Cleaning the house. Talking to him when he’s upset or he injured himself and we’re not around. Adjusting water temperatures and faucets, making sure the ovens don’t burn down the house, even closing the refrigerator. All these things are something Rosie from the Jetsons would do. Which gave us an idea. We at Sugey decided to start building a Home Artificial Intelligence called The Sugey One, and do this ourselves if the market wouldn't listen.

How it Works (and Help You Sleep Better)

The camera systems are placed at the exits of your house first, maybe one in the individuals's bedroom as well and anywhere else you'd like to track (kitchen, playroom), and are able to recognize people during day or pitch black night and track them around the home. The Sugey One camera sensors also have voice activation and speakers! These allow us to notify someone if a person wanders out of the home who is not supposed to, either by text or by telling the person in the house via speakers . It will also track simple behaviors like eating and sleeping intially. So, in summary, you’ll have a few private cameras placed around the home that will help you mitigate wandering (maybe help you sleep better), and help keep track of daily living tasks and store information for any future records (like times people wake up so you can tell if people may be sick or depressed). You have to start small when building artificial intelligence hardware. Large companies spend millions of dollars, and we, well, we don’t. However, we’ve made tremendous progress (blowing the pants off of the big companies I might add) focusing on these two areas, wandering and daily living. We find these are the top two concerns and we focus heavily on it in the present, while planning ahead for all the potential unique things people will need in the future. Lastly, the collected data is managed privately, and we have a unique hardware setup to make sure all the camera images are private as well.

The Gotcha

The biggest gotcha is that when we pitch investors on what we’re doing, often they come back to us with two problems.

  1. The market is too small
  2. You don’t have the backing

That’s right, shockingly I know, people telling us there’s no money for autism support.

Continue reading "Autism Community: "One Day We’ll Die and What We’re Doing About It" (Sugey One)" »


Traumas of severe autism and psychosis haunt a mother as she repairs her broken home and heart.

WeepNote: Every so often, we get a glimpse into the real lives of families facing the challenges of raising a child on the spectrum. Too often, we get a whitewashed, Hollywood version of autism, whether The Good Doctor or the 1 in a million young lady who becomes a lawyer. For many, probably most of our AofA readers, life is difficult. In my memoir, I wrote that I would never have a life that was like a big wedding cake, with a hundred plates of cake. I have a petit fours life. One tiny bite on one small plate. Maybe three small plates. And that bite is delicious. I savor it. While I want the whole cake, for my girls most of all, it's not reality for us. And so I find joy and delight where I can.  Read this blog entry below. The silver lining for her is scar tissue.  Think about that. Her daughter suffers from autism and severe mental illness. Her story is not unique. Many families have sought residential or inpatient treatments for their severely aggressive children, only to find nothing. We know the story of Alex Spourdalakis too well.  His mother spent weeks in an ER with her son tied to a bed. And then she murdered him.  This is life for many in The Age of Autism.  Robyn, if you read this. We are glad you are safe and hope that your Ariana finds relief from her agony.

###

Traumas of severe autism and psychosis haunt a mother as she repairs her broken home and heart.

By Robyn Fedrigon

We live in a beautiful home, in a beautiful neighborhood. I am almost done repairing destruction caused by severe autism and psychosis. It’s been five months since she’s been away. I’ve painted just about every room in our home.  I’ve spackled holes in the wall—the size of feet and fists. I remember the tears, as I painted over the last muddy handprint she left above the bathtub. And hanging new blinds from ones that were broken from her trying to, and eloping out of windows. Door frames needing total replacements from the repeated slamming while she was manic.

Continue reading "Traumas of severe autism and psychosis haunt a mother as she repairs her broken home and heart." »