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Living with Autism

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June 5, 2012

Kids cured of, lose and grow out of autism diagnosis

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryLast week I was at the health food store and ran into a woman I’ve known for some years, whose son is diagnosed “autistic.” It has never been easy to understand why her son has this diagnosis. He’s not autistic.

For example, he’s always been verbal, made jokes, interacts normally with siblings and friends and follows and engages in conversation around him. There are no ritualistic behaviors, hand flapping, echolalia or body rocking. Nor lack of eye contact or meltdowns during transitions. He plays with his siblings like a normal child. He attends birthday parties and other social functions with no problems. Yet, he's allegedly autistic. 

The only thing “different” about this child (now in his teens) is that he is hyperactive and has a few mood swings.

A few years ago, during half-time at a soccer game, I noticed the mother check her son’s blood sugar and give him insulin. As a result, he went from irritable and distracted to calm and focused.

Turns out he has, all along, had ADHD and diabetes. He’s “lost his diagnosis,” claims the mom. But she still demands the school funds his "autism behavioral services" and provide a one to one aide in his classroom. 

So, now we find children “losing the autism diagnosis.” Others are “cured” after they have a few ABA sessions, take some vitamins, ride horses with witchdoctors, eat gluten free foods or swim with dolphins.

In any event, here is a case of autism misdiagnosed with underlying etiology of “autistic behavior” being a direct result of uncontrolled blood glucose levels.  

The mom, by the way, is not concerned that her son was misdiagnosed with autism. Nor does she care that he received special education services under autism label, even after diagnosed with ADHD and diabetes. “It helped him get a one to one aide,” she said. “And many services he wouldn’t have qualified for under another diagnosis.” Like tutoring and assistive technologies intended for real autistic children. He was also involved, years ago, in an autism research study. No wonder autism research is stymied!

Yes, there are people who have autism and diabetes or other concomitant disorders. Yes, there are autistic people who improve. This kid isn’t one of them because he was never autistic. It’s not his fault. His parents are inconsiderate people who enjoyed the perks of receiving autism services for their non-autistic son.

It’s unclear why educational professionals never bothered to update his special education file AFTER he was diagnosed with ADHD and diabetes.

Maybe it’s because the mom is married to an attorney who storms into special education meetings, makes ridiculous demands and threatens to sue.  

So if you have an actual autistic child, either high or lower- functioning, and you’ve ever wondered WHY you have to fight so hard to get a piece of the autism pie for your child, remember this case.

This case is by no means is an anomaly.


There’s another parent I know, and he told me his son “grew out of his autism diagnosis,” as if autism is a pair of pants. They didn’t quite fit right, they were a little uncomfortable, they lost a button, so...., we tossed those pants and autism is all behind us now. We’re moving on.


Now isn’t that simple. How stupid of me! To think all this time I’ve been frantic and worried each time my autistic son has slammed his fists into his head, bloodied his nose, or had a tonic-clonic seizure...and all I had to do is say he could just grow out of,  lose or be cured of autism. 

Yes, It’s happening all over the USA: children who are not autistic, are being labeled autistic and lumped into the autism spectrum disorder, thereby compromising autism diagnosis and inflating the reported number of children with autism.

Although there is a spectrum, many professionals still haven’t learned to separate authentic autism from other conditions that temporarily or episodically present as autistic like behaviors.

You don’t lose an autism diagnosis. It’s not like hair. Or a ball game. And you aren’t cured of autism. It isn’t a disease. The hallmark trait of autism is being in your own world. A world of your own. That's why behavioral issues are common in autism. They are overwhelmed by the calamity and chaos of our world. Autistic people march to their own beat. They don't want to be swept up inside the daily waves and demands of this world. A non-autistic child or adult, however, will not routinely resist the conventional order of things. Nor will a non-autistic person be hyper-sensitive to gustatory, tactile, auditory and visual surroundings. To casually assign the autism diagnosis to children who aren't autistic has created chaos and confusion in the autism community. 

That's not to say those children misdiagnosed with autism don't need help. And their parents need services to get the respite they need. They do need help. But to adequately help someone, you must know what they really need. If kids aren't really autistic, providing them with services intended for autistic children, isn't helping find a cure or better treatment for people with authentic autism. 





7 comments:

Amy said...

I feel your pain. Some of the people on one of my internet support groups pounced on me because I said that I hated my son's autism. They made it very apparent that not only do they LOVE their kids' autism, but some of them even wish for more autistic kids. To them, autism is just a bunch of "quirks" that are to be adored. To me, autism is disabling. Autism means self-injury, aggression, massive meltdowns, having a non-potty trained eight year old,having a barely verbal eight year old, an eight year old who now also has Tourette's like tics, and in a privately funded special school. When I say "I hate Autism" they tell me, "You must hate your child then....because autism is just a part of who they are". I say "Are you dealing with Classic Autism then?" They say "How can you tell your kid has Classic Autism and what is the difference?" Face-meet-palm.

Anonymous said...

AMEN thats all I have to say. Autism cannot be cured or outgrown!

I will not deny though that a healthy diet helps some of the stomach issues and other behaviors, but if that child all of a sudden loses their diagnosis or all of a sudden isn't showing any sign of autism, news flash: the child was never autistic to begin with!

My daughter is on soy, gluten, casein free diet with lots of pureed organic smoothies and special supplements. Shes been through all the therapies/treatments provided, some extremely expensive, some far from typical.

I read these articles that say "this cures autism, try this" and laughed as I've been there, done that!

My daughter is in her teens, limited speech, in adult diapers, spends her days twisting her hands around in circles and is obsessed with sesame street!

I'm not against treatments because there are some that do help, but I'm sorry there is no cure for autism.

Melo said...

Anonymous~ NEVER say Never! They're have actually been kids cured from Toxicity/Autism I have learned LOTS and am still learning.. I would like to share a blog that has GREAT information and what actually helps and can get anyone who is interested started.. RegardingCaroline.com Good luck to you ALL!!

Another route which is a lil more $ BUT which has definitely cured a lot of kids from Toxicitiy/Austism is Rashid Buttar's clinic in NC. He has clips on youtube to show the connection.. YOU'LL SEE!

Anonymous said...

My daughter is a type 1 insulin dependent diabetic.
She has a one to one caregiver at school--she is 7 years old and will be in 2nd grade this September.
Mary Frances has an insulin pump and is medically fragile, If her blood glucose is too low she can have seizures and could die. If her blood glucose is too high it affects her ability to learn.
I cannot believe someone would begrudge a caregiver to a little child because she does not have autism.
What should the teacher do if Mary Frances needs attention? Should she call 911 every time? Should she call me and have me wake up Mary Frances' one year old twin brothers so we can dash over to school? Maybe my husband should be called from 30 miles away at his office to respond?
I don't think so.
We pay enormous property taxes which support our public school district which has fine services for our children.
Mary Frances is just as deserving of one to one attention as any child with autism and it is a better investment.

Anonymous said...

A one-to-one aid monitoring medical status is not the same thing as a one-to-one for serious behaviour problems. I'm sure you had to fight like the dickens for that appropriate accomodation - but no one is suggesting you lose it, or that it's not deserved. Please: you seem to be suffering battle fatigue? let's not pit one child against another based on diagnosis. A need is a need - and it should, in every case, be bona fide. Autism has become a diagnosis that guaratees - literally! access to speech therapists, for example. Parents actively seek out the ASD Dx, rather than fight for the related service(s) the way you and I and many others do. . . Finally, I find your "better investment" conclusion offensive. This is NOT a question of investment. Here is an offensive reality-check: a genius kid could get hit by a car tomorrow and suffer a traumatic brain injury... return on investment? You figure it out.

Kim Oakley said...

To the person who thinks providing support to autistic people is a poor investment, you are sadly mistaken. I fail to see your logic or reason. Apparently you adhere to the outdated logic that autistic people are hopeless cases that don't require additional or extreme supports. The reality is the more help and support they have, the more productive they become. It is never too late, nor is the severity of autism a reason for denying support. The more severe the autism, the more support is warranted for the betterment of the person and others who devote their lives caring for this person.

w ford said...

I am an adult with high function autism who has several other medical issues including the genetic disorder neurofibromatosis and I also believe in highfunct autism being grossly overdiagnosed. I had the speech and socials skills delay no talking untilled age 3 1/2 I live in orange county area of California and when my mom had to fight harbor regional center for my services ten years ago i was nit gaven services until age 11 even tgough my mom tried at age 3 and there silly excuse why not they now have to many hardly disabled clients getting to many services. If you want to know what nf is a nerve tumor disease with dozen other problems.

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