8 truths you need to know from a parent of an Autistic child
Whenever I am blessed with an opportunity to see my gr8fll friend Erica, she always without fail, asks, How can I help you?
It blows my mind. She herself is an only-parent having lost her husband to cancer, with a demanding full-time job that requires frequent travel, plus a side hustle the size of most people's dream careers. How could she possibly help me? How does she even have the energy, time, ability?
Hi! If you're new here, I'm {sb}, one of the 1 in every 36 parents who is raising an Autistic child in America.
Despite there being so many of us, we live in voluntary isolation doing our best to survive each day with joy & love, and with any luck, progress & hope.
You know us, but you know nothing about us. You have no idea how heavy the load is, how deeply we struggle, and how we live each day haunted by the paralyzing fear of what will happen to our children when we can no longer care, advocate, and fight for them.Â
Erica's question, "How can I help?", is a gr8 question many parents like me struggle to answer. The answer is never that simple. We've gone without help for so long, I'm not sure where or how to even start.
And that's how Erica inspired me to take some notes.
Let's start by addressing everyone's first question:
If I'm so helpless,
Why don't I ask for help?
For starters, I'm a GenX. The 'It's 10 o'clock do you know where your children are?' generation. You may also remember us as the 'Thirsty? get a drink from the hose.' generation. GenX was raised to figure shit out on our own. To never {like ever} to be a burden to ANYONE unless you were missing a limp or the house was on fire, and even that was questionable. Asking for help was something we were never taught or encouraged to do.
I'm gr8fll for the hyper-independent GenX Cards I've been dealt because they have served me very well for this lifetime. These forced high-function muscles help me stay in the game of parenting a child with disabilities in the world that's not designed for his survival. As I evolve as a parent, I'm re-learning ways to recognized asking for help is a sign of strength, not weakness. But...
Society says me & my disabled child are not worthy of help. I've been advocating for my son since he received his diagnosis at 18 months old. Even with an early diagnosis, he sits on an erroneous wavier waitlist {year after year} for the services he needs right now. He will likely age out of eligibility before he ever gets a chance at access to the appropriate services he needs for a healthy independent life.
When I advocate for the help my child needs, the people who are in {paid for with your tax dollars} positions to provide access to help tell me I'm:
"Privileged"
"Ableist"
"Ungrateful",
& my personal fav,
"Too Put Together"
for my profoundly disabled child to receive the help or services he needs.
If I mentioned my child's American Citizen Rights, I'm a Karen.
If I mention my tax dollars, I'm an Extremist. {really?}
If I mention my own mental health, I'm a dehydrated ungrateful ableist.
And, if I prioritize my self-care, show up to the appointment prepared with notes & clean hair, I'm shamed for being "too put together".
Why is there so much name calling in realms specifically designed to provide help and services? Why are we teaching our kids to ask for help when this is the response their going to get?
IMPORTANT NOTE: I would not be doing my job as an advocate if I did not mention... Even those who are deemed worthy of help by society or the state are NOT getting the help they need. Makes you wonder, where are all the tax dollars going?
Autism doesn't discriminate, help for Autistics shouldn't either.
Lastly, the "help" that's out there ISN'T HELPFUL, it's harmful. The majority of what's considered "help" in education, social services, government laws and healthcare is 100% NOT HELPFUL for Autistic humans or the parents who care for them.
Much of the "help" was developed in the past for other types of disabilities and Autism got roped-in with no consideration for what the real needs are. Worse, this "help" was developed by Non-Autistic Humans who are in it for the money & power -> helping Autistic humans thrive isn't on their agenda.
Parents like me are not willing to subject our children and families to "help" that forces us to give up our rights, our safety, or causes lifelong pain, suffering, and unrepairable trauma.
We're cautiously & optimistically winging-it. Doing our best to keep up with needs that are more than parents alone can sustain.
Why is it like this?
Autism is an invisible disability.
If non-disabled people don't "see it", it doesn't exist. If my child was in a wheelchair no one would question why he needs assistance in the bathroom. Yet here we are.
To make matters worse, Autism's vast & unique differences are defined by a SPECTRUM which for a Neurotypical / Allistic mind looks like spaghetti thrown on a wall.
Now add in what a horrible job Hollywood is doing depicting Autism in everyday life. No Autistic person is like The Good Doctor, EVER.
Many Autistics have profound disabilities that require support and modifications for every aspect of their lives. They will never have the opportunity to live on their own, attend higher education or have a job. Even though many would be exceptionally purposeful in the workforce if they had the right help, support and modifications.Â
REALITY: The help we need does not exist. {yet}
When I shared a draft of these notes with Erica, she did what all my cre8tive friends do, and she provided me with feedback I didn't want to hear. Touché!
She said it wasn't good enough, she wanted at least 3 action steps on how she could help me. If I had ONE WISH for help, what would that be?
All I kept coming back to was awareness. Maybe if other parents, colleagues, community leaders heard the truth, took the time to understood more about the types of help we need and why, maybe we might not be so helpless.
So here goes nothing.
8 Truths You Need to Know
From a Parent of an Autistic Child
ONE: We need access to Autism-Appropriate support services
Access for ALL Autism families especially those with children under the age of 18. I'm talking real access. NOT: "Here's the number to DDS, apply for a grant."Â Unrestricted access to non-abusive and Autism-approved appropriate services provided by vetted, trained & certified professionals.
Appropriate Support Services
include but are not limited to:
Speech Therapy
Assistive Communication/Technology Assistance
Occupational Therapy
Home Safety Modification Assistance
Sensory Therapies
Physical Therapy
Mental & Behavioral Health Services
Community Support Assistance
And yes,
Respite Care: Because every parent is worthy & deserving of a break. We can't ask just anyone to watch our kids. They have unique needs that required trained & experienced individuals.
TWO: Our kids are on an erroneous AUTISM WAIVER WAITLIST to nowhere Connecticut is making billions off legalized weed & gambling while thousands of American Citizen Children with an Autism diagnosis sit on an erroneous waitlist for services for life -- BECAUSE THERE'S NO MONEY??? You will never convince me that non-citizen children's healthcare needs come before the needs of American Citizen children with health insurance & tax paying parents.
THREE: We need iPads, on-repeat
They don't have to be new ipads. They just need to work and not have a cracked screen. Our kids literally can't live without them. iPads are how they communicate and get through the day. Unfortunately, a case that helps protects ipads from Autism doesn't exists yet either.
If you or your business are getting rid of old ipads or would like to donate, please email me. I will ensure they get to Autism families who need them.
Also, if anyone knows someone at Otter Box, I have A LOT of suggestions for an Autism Proof Case. Teen8do would be happy to assist their Quality Assurance team with product & safety testing.
FOUR: We need Doctors who treat Autistic Humans
BEYOND THE DIGANOSIS, we need doctors who understand the development & health commonalities of Autism. While Autism may be a spectrum of different neurological identifiers, the health issues amongst Autistic humans are something they all have in common. Sensory, stomach, and skin issues are all very common with Autism and yet every pediatrician treats it like a mystery.
WE NEED SLEEP! Sleep disorders alone are paralyzing Autism families and all doctors can say is, "there's nothing we can do."
We need doctors who specialize in treating these non-typical patients with typical symptoms who may not be able to articulate how they are feeling. And, if I'm not asking too much, it would be gr8 if these doctors took appointments after-school hours, evenings and weekends.Â
The last time I asked my pediatrician for a referral to a doctor that specializes in Autism Adolescence, she laughed in my face and said, "Good Luck". She's just being honest, in the entire YALE MEDICINE DIRECTORY, there's not one.
4 1/2: We also need Autism Health Insurance Billing Codes - STAT!
Non-typical kids don't go to the doctor or the dentist in typical ways. Our kids require shorter & more frequent visits to build trust, communication, & connection so the doctors & dentists can do their job. The alternative is sedating our kids in a hospital twice a year and it's no good for anyone, not to mention FAR MORE COSTLY. Currently some insurance companies will allow for 1 extra "behavioral" visit. I'm saying we need 6-12.
FIVE: We need Accessible Bathrooms
Especially in special education schools. DUH!
Our children are stripped of their dignity before they even get a chance to understand what's happening in their bodies. Ask any parent of a disabled child and they will tell you NIGHTMARE stories of how their child was "assisted" in the bathroom and what that bathroom looked like - in a public building - that is supposed to be ADA compliant.
It's shameful that in 2024 parents are being arrested for advocating for basic bathroom rights of their child. You should know, Autism parents will continue to advocate from jail, even from the grave, nothing, not even arrest will stop us.
We also need higher standards for community bathrooms too. Putting lattice work around a couple of porta johns does not make our beautiful Branford Town Green more accessible for ANYONE from families with young children to the elderly and everyone able bodied or not in-between. Change starts right here in our home towns.
SIX: Video Cameras = Accountability
We need video cameras in ALL special education schools. Especially those schools that have been found in violation by authorities for abuse, mistreatment, and neglect. We need cameras in every classroom, therapy cubie, bathroom, and outdoor spaces too.
Child abuse in special education schools is rampant and no one is being held accountable.
40% of our kids are non-verbal and they can't tell us with words. Teachers unions, schools officials, and the lawyers on both sides are using their inability to speak to their advantage to protect the abusers. Worse, they are fully invested in bullying and threatening parents who speak up. Parents can't so much as write a Google review to warn other parents without threat of lawsuits or having our children taken away.
The Special Education System is the most corrupt organized crime happening right out in the open for all to see.
The lies, the cover-ups, the backdoor deals, the intimidation of para professionals & witnesses. Ask any parent with a child in a special education school, and they will share terrifying account that includes a brutal battle to save their child from repeated abuse, with a painful loss of thousands of dollars spent on lawyers who were "unable" to help. The lawyers that pop up first in your google search are never going to help your child. They are ALL in on it together.
Video Cameras = Accountability.
If schools have nothing to hide, they shouldn't be fighting so hard to keep the cameras out. No one but the authorities needs to see what these cameras capture. Schools are using their own misinterpretation of FERPA laws against the families it was designed to protect.
We have a human rights scandal in education.
Our children have been waiting years for legislative protection.
SEVEN: ABA Therapy is abuse
We need your help to OUTLAW ABA: abusive therapy, restraints, and traumatic isolations in our schools and therapy facilities. The ABA community is made of Non-Autistic humans who are making BILLIONS and currently, their voice is louder. Yet, ask any actually Autistic human and they will share with you in full detail how ABA destroyed their lives beyond repair.Â
ABA professionals will try to tell you that "their ABA" is different and not abuse. They'll rebrand their website with calming colors, diverse stock photography, and tell you it's "what your child needs". It's still abuse.
Allowing ABA professionals to repeatedly say their therapy is "different" or "not abuse", is no different than allowing a serial rapist to say their rape isn't violating, that the child needs to be raped and traumatized to learn how to be compliant and "available for learning". ABA is also compared to Gay Conversion Therapy. It's forcing the Autistic Human to be something they are not in a painful and dehumanizing way.
GUESS WHAT!? Physical restraints are also ABUSE.
Traumatic Isolations & Padded Rooms, yup, still ABUSE. #removetheroom
Institutional abuse is thriving in our schools under the guise of reasonable force. Children are being conditioned with reactive violence to exert a position of submissive behavior and control.
Autistic children are being viciously abused in broad daylight at school every day and nobody gives a shit. Our children are being taken advantage of in-front of adults who should be protecting them. Kids with disabilities are being intentionally pushed beyond their ability to cope while everyone sits back and collects a paycheck (funded with your tax dollars).
THE SOLUTION IS COMMUNICATION NOT COMPLIANCE 40% of Autistic children are not verbal, the focus needs to be on speech therapy, ASL, assistive communication devices, compassion, & understanding. Not cruel & unusual punishment, abuse, restraints and isolations that leave a lifetime of unrepairable damage.
EIGHT: There needs to be an Autistic Seat at every table.
It's time everyone, including our government, education, & healthcare started listening to actual Autistic humans. Not the heavily funded lobbyist for agenda-based abusers & their organizations committed to torturing or "curing" Autistics.
It starts with YOU! Pull up a chair and cre8te an Autistic seat where you live, where you play, where you work, where you vote, everywhere there is a table, Autism needs to be recognized, represented and respected.
Are you feeling more aware?
As you might imagine, Erica is still waiting for her action steps. If you're like Erica, and you'd like to learn more tangible ways you can help, stay tuned for Part 2.
Hi. I'm {sb}, owner of {sb}Cre8tive, an American dreamer entrepreneur, and a passionate Autism advocate. These are my Cre8tive Notes, an unfiltered account of life's Cre8tive Journey.
Join me in exploring the realms of cre8tivity, self-employment, and Autism parenting—a space where truths are unveiled, experiences are shared, and lessons are learned.
For inquiries please email: sb@sbcre8tive.comÂ