What's the Connection? SSRI's, Pregnancy and Autism
Back To School: Are Cameras Needed?

Denying Healthcare To Those with Autism Isn't New

Denied stampBy Kim Stagliano

Traditional and social media are abuzz with a story of a Pennsylvania man with autism who has been denied a heart transplant at The Hospital of the University of Pennsylvania over his "psychiatric condition" and "autism."  His mother, Karen Corby, is rightfully outraged that her son's life has been judged and fallen short of the "criteria" for life.

In thinking about the story, it occured to me that while denial of a heart transplant is cut and dried no bones about it refusal to give medical care to a sick American - it's only the ugly publicized tip of a dirty and monstrous iceberg under the surface of healthcare for people with autism. I've seen denial of healthcare to my own three daughters because of their diagnosis many times. Here are the times I can rattle off the top of my head (it's the last week of summer and I'm running on six brain cells and an overdose of Starbucks Darker than Peat Moss brew.)

1) Pediatric hearing test. Nurse asked me if daughter would answer yes or no to the sound. I said "No, she will not."  "Then we can't test her." And that was that - no hearing test, which is a standard well visit procedure.

2) Vision test.  See above.

3) GI tract testing. Child stopped having regular bowel movements after age 12 months and the introduction of whole milk and Cheerios. Pediatric response? Miralax.

4) Grand mal seizures. LA neurologist friend strongly suggested a spinal tap to rule out causes. Children's hospital doctor appalled that I asked - "Why would you want to put your daughter through that?"

5) Clumsy gait, knocking knees, hips splaying while trying to walk up stairs. (And not walking until 23 months.) Requested eval for cerebral palsy and questioned birth process problems. "It's autism."

How about head banging? Headaches. Posturing the body over a sofa arm? Gut pain. Incessant infant crying? Brain swelling. The list goes on and on - denial of medical care because of the autism diagnosis.

How many readers can bring their children to the dentist for a cavity filling without the need for an insurance review for anesthesia?  Thanks to a healthy diet and diligent brushing (with non-fluoride toothpaste I might add says the orthodontist's daughter) we've only faced one cavity. We had to spend the morning at a local surgery center and then deal with the recovery process afterward. For a filling.

How do you think gyn care will go for my daughters? How many men with autism will never have an EKG, let alone a heart transplant.

I'm sure your children or maybe even you if you're an adult on the spectrum have been denied proper medical care because of the autism diagnosis. I expect this to worsen in the coming years as teens become adults and then young adults become middle aged and elderly - without their parents near them to fight on their behalf.  

As we keep track of death by wandering, drowning, at the hands of a parent or caregiver in autism, I say, "autism kills from the outside in."  But it seems that in the future it may indeed kill from the inside out, as our loved ones are turned away from care.


House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

 

Comments

Feed You can follow this conversation by subscribing to the comment feed for this post.

Jan

We've been through this with my son with Autism and I have seen it firsthand with my beautiful 29 year old daughter who is suffering horribly with Fibromyalgia. She is treated like a nut, a hypochondriac or a drug addict. Can't find a single doctor who wants to try and help her get well or will treat her severe pain. It is disgusting!

Angus Files

I can only add same with our son Autism/bowel probs/learning disabilities...= no chance of any help in the UK apart from speech and language therapy ...for a non verbal is as good as a fart in a space suit...


Angus

cmo

Perhaps the medical industry could be replaced by a system from Mexico, China or India who would set up shop in the USA and work for about 10 cents on the dollar of the present system.

The medical intellects could then be told they have been replaced and that they should train for new careers and get into the job market....

That is what about 20% of the workforce is doing right now.

DeliberatelyPoisoned

And in response to all those articles I see about how will the state pay for all these ruined lives . That it will bankrupt the country etc etc . The state wont be paying for it . In the same way that the state didnt pay for the Vaccines(WMDs) in the first place . We all of us , paid for the govt to poison our own children via our taxes. And we'll , all of us , pay for their care until they die via our taxes. That is the beauty of their plan , the ones behind this , they never foot the bill .And they dont care for us , and they never did . Look at the state censorship waged against us , look at their denials as they continue full steam ahead with their plan . Look at the blatant lies surrounding Denmark , surrounding Swine Flu H1N1 hoax (twice 1976 & 2009) ,mercury amalgams , NSSM200 . Vaccines are the missing Weapons of Mass Destruction .... I can confisdently declare I have found those missing WMDs .

DeliberatelyPoisoned

In response to Jenny Allan , we went private to speed up the diagnosis . Ahh I remember those days fondly , when I thought we would turn up to a certain Doctor in Hendon (giant of a man ....but alas not intellectually ....lovely accent though and presentation , bothered) and he would fix everything . We went thru the hearing test routine . And progressed onto seeing 5 doctors to collect the autism diagnosis . You know the story I'm sure , the earlier it gets diagnosed the more help will be available .....tosh tosh & more tosh . The dead silence I was met with by all of them on Harley Street (should be renamed Charlie Street in my view) when I told them I thought the vaccines had caused it . They are dishonest to their very core the lot of them . My one solitary victory was seeing this drunk professor on Harley Street one friday afternoon who was so jolly he insisted my child be allowed to run free in his offices whilst we had our stupid dumbass talk with him .Anyway after 15-20 mins we went to get our child from his little playroom , and he had flooded the place by turning on their water cooler (it didnt auto switch off).
This gentleman was so pished he said it didnt matter , I need not help clear it up , everything was ok .
Monday morning came and he was on the phone to me demanding compensation for the massive water damage (he had sobered up by this time of course), and my delight at telling that charlatan where to go . Ah the joys of a state sponsored poisoing ....I'll look back on these days with great .....anger and total resentment .

How much longer?

Holly, we had a simliar experience with epilepsy. For the first six years of his life I was told by the ped that son's aggressive behavior, head banging, etc was "just the autism" and that there was not much we could do. At three he was extremely high functioning yet by six he was severely autistic and back in a diaper. Nobody recommended a neuro consult and since I'd been told for years that the only neurologist in my state didn't treat Autism, I didn't know I could ask for one. Finally, when it had gotten so bad an ABA therapist said she thought it was seizures. When I suggested my son might have seizures the pediatrician made a neuro appointment and my son's brain was in petite mal seizures 24 hours a day. All these years later I still wonder why that pediatrician could not recognize that an Autistic child needed a neuro consult. I know many pediatricians find some Autism parents arrogant know-it-alls but that's just because we've had to figure so much of this out ourselves. I call it confidence. Now I'm left to grieve the fact that if his seizures treatment had started at three, when he was high functioning, instead of at six when he'd lost everything, things would be easier for him. This is why I am so bold and demanding with doctors now (an arrogant know-it-all in their estimation). After the seizure and tethered cord debacles, they will not miss anything ever again with my son. I simply will not allow it.

Holly Riley

Not funny but true. My son (who is recovered from autism!) was diagnosed with epilepsy last year after an EEG at the NIH revealed frequent centro temporal spiking. He got that EEG as a participant in the yet to be released "Remitted Autism" study that looks at kids who have recovered.

For six years we worked with a "DAN" doctor to treat his very real medical problems. We were lucky that he responded so well. I was told by a pediatrician, however, that she though he was outgrowing his autism. But suddenly, now that he has epilepsy DX, his medical problems are legitimate. He gets more respect for the subclinical epilepsy than he ever did for autism.

So epilepsy, which is the brain misfiring, is widely accepted in mainstream medicine. It's real, it's medical and it's treatable. Epilepsy could, in fact, be the result of vaccine injury. (some kids actually need extreme dietary intervention!).

Autism, which is the brain misfiring and a whole lot more (just look in a diaper!), is a mystery but definitely cannot be related to vaccines. It's psychological and there's very little that can be done (but don't try that crazy diet). If your son is getting better, he must not have had it in the first place or he outgrew it (no, I don't want to know what that other doctor is doing).

Here's what I tell people. If your kid fell from a free and broke his arm, you would never let a doctor tell you, "Sorry, I can't treat his fracture. This kid has autism." But that's what many mainstream doctors are doing every day when they refuse to see beyond the label. One of my favorite ways to get under a doctors thick skin is to ask a simple question: "Of this were your child with this medical problem, what treatment plan would you want for him?"

How Much Longer?

Ditto, for years my son was dismissed by our local GI doc. She told me I was probably just feeding him too much cheese (this after I told her he cannot eat dairy). Six horrific(and I mean HORRIFIC) years later he was diagnosed with a tethered spinal cord, because by this time he could barely walk. And what do you know, after surgery at age nine 95% of his behavioral issues resolved learned to read within a month after having surgery. It makes me sad that this could have been discovered at age four and all of that suffering could have been avoided if only the doctor had something to say besides, "that's just the Autism" and "you're probably feeding him too much cheese".

Carolyn M

I had no problem getting a hearing test for my daughter. They administered the one that they use on babies - no cooperation required. The child does not have to visibly react at all in order for them to determine whether there is a hearing loss or not. They hold a device up to the child's ear and it sends sound out and measures the ear's response.

When my daughter developed chronic, severe constipation they prescribed laxatives, finally settling on mineral oil, and did absolutely nothing else.

When she was banging her head on anything within reach, the doctor would not examine her to determine whether she had a concussion (or anything more serious, which was the only reason I had brought her into his office) - but he was very quick to prescribe risperdal and to try to convince me to fill the prescription. When he did not succeed, he was also quick to tell me that I would "regret it". What turned out to be wrong was multiple teeth erupting, allergies, and xenobiotic overgrowth re-occurrence; I am extremely thankful for DAN doctors and have never regretted that unfilled prescription.

Christine MacVicar

I have an adult son here in the u.k. Despite being able to produce private tests and expert opinions based on these tests that there are several conditions requiring investigating, our NHS will not take this further. A gastroenterologist agreed to see him and the GP made the referral but the Health Board intervened and stopped the appointment. I turned up at the clinic and refused to move. Guess what - they lost the most important of the tests!
Children with ASD in Scotland can have immune, genetic, metabolic tests but the reality is that there are no doctors who understand the need for these or the complexity of the complex web that is ASD.
If you do not get diagnosed as a child, there is no right to investigations.
In the u.k. we must pay into our Health Service and then you have no choice unless you can find more money.
Things have definitely got worse since Andy Wakefield spoke out.

Vicki Hill

You've struck a nerve with this article, Kim. We have all experienced it. My son with ASD frequently ran fevers in the 104 - 107 range when he was young. Once I phoned the after-hours nurse line in the evening when his fever was around 105. I've never forgotten her response, "Just what do you think he has? Meningitis or something?"

From what we now know about autism and brain inflammation...yes, lady, it is entirely likely that he had some sort of illness causing inflammation of the brain.

Ted Van Oosbree

Dentists have been understanding and helpful but most physicians have no clue or don't want one. Miralax is S.O.P. for bowel problems in autistic children. Years ago, our then pediatrician admitted that he knew little about autism (he could not recognize my son's flagrantly autistic behavior as pathological). Our present pediatrician is no more knowledgable but more understanding (he has an adult son with ADHD who suffered Kawasaki's disease as an infant) and he doesn't bother to badger or criticize us for failing to vaccinate our daughters (healthy, beautiful girls who are growing up normally).

Benedetta

I thought it was autism the reason they did not treat my son.
They didn't treat him for seizures for years.

But guess what - my daughter did not have autism and she never was really treated for continued immune problems, hit and miss on the depression, it is not really serious they said as they handed a 14 year old zyloft, and that pituitary gland with constant periods - we have some pills for that too. We are talking about a 14 year old and you are talking about zyloft and birth control pills - but she is top in her class and can learn so --- No Real Problems!

My husband did not have autism and he too was in the end - told it might be all in his head; in which my husband says okay - fine - then how do we fix that? In which he was sent to Emory clinic and then told to take Co enzyme Q 10 - Not helpful at all.

They don't have a clue what the problem is --- and I would like to know why they don't? They darn well should by now?

I have family out here that I know something bad is going to happen health wise to them at a very young age - brain/heart included.

When they finally do solve it--because we make them -they will look down their noses at us - and then the world will forget!
I hate it that the world will forget and some people gets to retire and have a good life until they die old, in bed on the edge of an ocean in a big nice home.

They will forget that back in the 70's they told us to reduce meat and eggs ----Made us feel guilty about eating a happy meal at MacDonalds that actually had a small patty of red meat in it --- but sugar is okay in moderation and lots of carbs --and nothing said about flour/wheat -- why bread is an essential part of filling us up in America.
That Americans were fat and lazy and we needed to get a grip and use some self control as they all munch donuts in the next room - most of the time in full view of us. I have spent my life in doctor's offices, labs, emergency rooms and let me tell you -- all they do is "Eat"! They need self control too.

We- we can not eat those carbs ; All our energy pathways are now able to handle is protein and fats.

Carter's Daddy

They're lying. You can give a non verbal kid a hearing test. They have ways of telling if he or she heard the sound. Dark room, selective lighting on objects, the sounds are toys making toy sounds like bells jingling or cymbals crashing. They observe the child's response, where he looks and how he reacts. Ours little one on the spectrum got such a test. *BUT* it was before his diagnosis. He was under 2 IIRC. He just wasn't talking. I wonder how it would have gone if he did have his diagnosis, whether they would have purveyed the same lie they gave you.

Jenny Allan

DeliberatelyPoisoned
I am surprised you were charged hundreds of £s for hearing tests at Great Ormond Street Hospital, London, since this is an NHS hospital. I assume your son is not a UK national?

Hearing tests are routinely done on children in the UK, particularly before starting school. This is part of UK government health policy, which, in the UK, is free at the point of use. (There are exceptions with certain aspects of dentistry and spectacles, but there are always free child options).

Center for Autism and Related Disorders

It's sad to see that so many families have issues with doctor's giving them the correct treatments their children need. Even more so, we see families struggling with insurance companies that are unwilling to pay for behavioral treatment for autism. Hopefully with more awareness, we'll see more compliance from doctors and insurance companies alike.

DeliberatelyPoisoned

Kim your story reminded of one of mine . Taking my child to the so called Great Ormond Street hospital for a hearing test . These guys were hitting us for £300 - £400 a go .
And these are supposed to be the best in the country .
It was nothing short of a disgrace I have to say .
The most talentless bunch of bar-stewards you could ever wish to meet . My father (a very talented individual)could design better hearing tests with a pack of sweets . GOS were in the end unable to determine if my kids hearing was ok or not . And as far as I recall they still want us to return for further ca$h , sorry I mean a follow up check or cheque . With brains like that on show its no wonder that the fantastical Autism puzzle is yet to be solved . And the emperor is wearing a wonderful suit of beautiful clothing . Cant you see it . What is wrong with you ? You must have been vaccinated if you cant see that .

AmyinIdaho

We had a Behavioral Optometrist tell us he didn't think he could work with our son because he wasn't "compliant" enough even though I made it very clear we could/would do the required programming at home. Guess my son has the "wrong kind" of autism for that kind of therapy.

Also had a floortime consultant tell me that I spend a lot of time on behavior management and that his opinion was that my son didn't have enough limits and he was basically acting out for some boundaries. This consultant hasn't denied us care but I'm pretty sure he's clueless about what "our kind of autism" is and how it manifests itself which makes me not so anxious to work with him any longer.

We also just re-started some OT but because my son is older and still rather physical when pushed to his limits, we are experiencing a rather suspicious rotating of staff before really getting started. Again, my son has the wrong kind of autism and since he's not a cute little 4 year old anymore, finding professionals to work with him is getting more and more difficult.

We've never been to the dentist because he's going to need sedation and I haven't found the right dentist yet who understands his fragile medical status and is willing to work with my son where he is.

Is it any wonder parents are seeking alternative-style healing modalities?

Kapoore

My thoughts are that one day the pioneering medicine that evolved out of the autism crisis will consume a chapter in the medical books of the future, while much of the statistically based, non biologically based medical practices that fit into the drug company managed protocols of the doctors offices of today will be tossed into the dust bin of history. Not that any of this eases the practical day to day challenges for the autism families. So sorry that doctors make your life so hard. By the way, why even bother with the orthodontist, which to my mind along with vaccines is a giant scam. After years of painful treatments my own daughter had to have a gum transplant (with dead persons tissue) because the braces exposed her bone. And there was nothing wrong with her teeth to begin with--reminds me of the hoax of vaccines like the DPT where the T is basically dangerous if you live on a farm and the D is dangerous if you are in a World War I fox hole without antibiotics. Dahhh

Madvocate

Weeks after surgery, my son was complaining of pain, and I asked the doctor "Is this normal?" His answer: "It's normal for him."

My son has never complained of pain for no reason. This lazy doc just wanted to give us the brush-off and he knew my son was on the spectrum, so that was his excuse. The kid is abnormal, therefore his experience of pain must be abnormal too.

Sarah

Thanks for writing about this Kim. This is blatant discrimination. I tried to get an appointment with a neuroimmunologist for my son at Childrens Hospital Boston and was denied. I asked my son's neurologist about mito tests and he said no. They steer us toward genetics yet my sons genetics test came back "normal" per the lab report. My son has severe sensitivity to sound and again I've had no luck getting him help for this problem. So what now? Where do we turn? To eachother. I'd love to pursue some metabolic testing but I am now gun shy about asking for further testing. Why do we get blocked at every turn? It's like they built a wall when it comes to testing and treating autism. The standard response is no. The Autism Treatment Networks (ATN) sound like a great idea but where's the treatment? I have yet to see what the ATN clinic's provide or will do to medically help our kids. The portrayal of the traditional medical community on TV is so disconnected from reality especially for autism parents. They are not on our side.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)