Parent or Autistic Child: Who Dies First?
Dreamer

If Doctors Said EVERY Cancer Diagnosis is Likely Terminal What Would Patients Do?

Frustrated doctorIn 1999, a jerk of a doctor at Rainbow Babies and Children's Hospital in Cleveland, Ohio diagnosed Mia and Gianna with autism, handed me a $.50 school folder in which the very top piece of information said, "There is no cure for autism, you can only hope to make the person's life better," or something very close to that.  She then went on to tell me that Gianna would likely be on medications for her oppositional defiant disorder by first grade. Gianna was 3 at the time. Then she gave us the HUGE treatment plan, "Call early intervention" and sent us on our merry way. Alone. To tackle then the growing universe of ABA, DAN!, Floortime, Education, TEACCH and 1000 other therapies.

NOTHING HAS CHANGED.

Without divulging any personal info, I am sharing what I read yesterday on a special needs Facebook group, from a Mom whose daughter was just seen for a diagnosis. 

They also said something along the lines of her possibly never being fully independent which scares the crap out of me. Feeling so heartbroken and disappointed. She obviously needs help, why does it have to be such a fight.

Why does a doctor tell a parent the child MIGHT never be fully independent? It's akin to every cancer diagnosis coming with, "Well, it could be terminal, only time will tell."  

It's TIME for change. But who? How? And when?

Comments

Emmaphiladelphia

@Bill

"One autism related rare genetic disease called Tuberous Sclerosis causes these rare cancers yet the parents here at Age of Autism will not get their children checked for this condition."

How did your parents know to check you for this disease? Was this initiated by your doctor or them?

susan welch

Bill, I have to ask how you know 'Parents will not get their children checked out....'?

Do you think this applies to all parents, or just those at Agoe of Autism?

Sherri

I always found it curious how they refer to it as just a big mystery. No known cause, no cure, there's nothing you can do. But...if they pretend it's such a mystery with no idea what's happening how then can they say there's no cure? No known cause, no effective treatments, big mystery and DON'T YOU DARE ASK A QUESTION OR GO LOOKING FOR ANSWERS ON YOUR OWN! That was probably one of my biggest clues way back when in the early 90's. Absolute hostility to any questions. Listen to your gut and don't give up. Some are recovered, some not, some vast improvement. Diet (no gluten, SOY, dairy), detox, kill off viral/bacterial pathogens, heavy metal load, yeast, etc.

Bill

Many forms of cancer ARE terminal especially Sarcoma. Even if the person has the impacted limb or organ removed it will still have spread to their lung and brain. sometimes early in the process. One autism related rare genetic disease called Tuberous Sclerosis causes these rare cancers yet the parents here at Age of Autism will not get their children checked for this condition

Morag Lyons

Thank You Kim and family ,and the Age of Autism is still moving forwards not backwards!
We Can and we will be able to help the health and social care professionals in their longstanding training deficiency . Actually Proper Prejudice Training , makes candy floss stuff of emotional offence?
Does it pass the bed pan test ? being neutral ? to help someone needing this support ? Or ?
Nurse Ratchet, Medication Time ,YouTube .

See Book Healing Threads By Mary Beith

Runrig with former member Blair Douglas - SKYE

Don't let them know we are not at all scared of their Psychodelic" Criteria and Guidelines !
How can we help Corporate social responsibility? - Presenting at still at the developmentally young - still playing with it's self?stage of development ,dry it's eyes and grow up for it's own presentation!
We have come through similar before . Therfore their disadvantage Not Ours? !

Still with Trump

If they were going to create a "vaci not see" party and use vaccines to do what they want, to who they want, and avoid loading people onto railroad cars,

What would they be doing different ?

Emmaphiladelphia

If Autism is now 1/30 in the U.S., we are now a VOTING BLOCK.

The Canary Party was too early. Our numbers are growing exponentially and we can now ride on the coattails of the ADULT Covid vaccine injured who are rising up. We must demand a place at the political party table (whichever that may be) and be a single issue voter. Get Del Bigtree and RFK Jr. to write up a plank for us that we can agree on. If AOC and the "Squad" can do it for the Green New Deal, we can do it for the future life of our children. We also need health freedom candidates to back. Our numbers are our only defense. Appeals to morals doesn't work for the vaccine pusher crowd.

annie

Catchphrase medicine is infuriating!
“Correlation is not causation”.
“No known cause, no known cure”.

What they really mean is no acknowledged cause, and no acknowledged cure. A lifetime of no acknowledgement. I came across something in the Twittersphere regarding Alzheimer’s & Parkinson’s and wondered if there was any kind of autism application. I know brain injuries are not all alike, but maybe somewhere, SOME scientists are working to improve things. For what it’s worth, this Horton hears you Who’s.


https://mobile.twitter.com/Karl_Was_Right/status/1550201913747992576


https://m.youtube.com/watch?v=MoOwbXap6LM

Autism Mom

Parents should take articles like the following to appointments and ask what "environmental factors" should my child avoid? https://pubmed.ncbi.nlm.nih.gov/35865626/

4Bobby

I remember my son’s neurologist telling me about the spectrum… some people sit and rock in a corner and some are college professors whose relationships are just a little funny.
So not helpful.

Gayle

I have an adult son with autism and am terrified about what will happen to him when I am no longer here to take care of him! I have had anxiety and depression for years of worry about his future life. We have a doctor whose name is Dr. Michael Goldberg who has written a book called "The Myth of Autism" published by Skyhorse Publishing in which he says that our children/adults have a neuroimmune dysfunction syndrome that can be CURED with medications known as Immune Modulators. These are the medications that have the best hope to cure the illness/disease process that our children/adults are suffering from. Please read the book and post to all social media that you use to get the word out that there is hope if he can get the funding for the clinical trials for these life saving medications. There is still HOPE for us if we can succeed in this effort. May God help us to get there.

Jody

Same story - 1998.
Silly me - I actually called the social worker on the team (of 6) the next day and asked what she could suggest to help my family navigate this news. She seemed pretty surprised by the question and had nothing to offer.

maurinemeleck

2 years ago I was diagnosed by a doctor in a cancer clinic in Jacksonville that was associated with the hospital I go to---with CLL-(chronic Lymph Leukemia) and was told there was no cure and I probably had 2-5 years to live. There was no med or help recommended. Well, 2 years later(with a new doctor) I've either gotten rid of it or I never had it and the clinic made a mistake.
I will never believe in no cure anyway.
Where are all the new therapies for those with autism? Am I missing something?
Maurine

John Stone

So right Kim

I could not begin on the feeling of utter helplessness and betrayal - another country but exactly the same

John

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