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View Full Version : ANYONE FAMILIAR WITH CHILDHOOD AUTISM? NOT A LUPUS QUESTION



MARYCAIN
08-29-2006, 07:42 AM
BUT NEED ADVICE. My niece's son, who is six, has been diagnosed with childhood autism - my concern is I think my niece is being scammed.
I'm around her son a lot and his behavior is no different from my boys - he's rowdy, mischievious, typical boy. I haven't seen any signs of autism - he doesn't have any developmental delays, speech is clear, he interacts with other people, even strangers. The only thing different about him is he throws unbelievable temper tantrums, but I know this is a discipline problem because he only throws them when his mother is around - they never happen with me or his grandmother.

His mom took him to two different doctors to see if he had ADHD, both said no, then she found this guy who advertises himself as a "holistic child therapist" who diagnosed autism and recommended extensive therapy and a long list of supplements and vitamins, all purchased through his office. This to me has SCAM written in flashing red letters. I can't find any records where this guy has any formal medical or psychological training and he doesn't belong to any professional organizations. The state medical board says as long as he isn't claiming to be a doctor or writing presciptions, it isn't technically illegal,

My sister and I have both talked repeatedly to my niece but we can't seem to convince her this guy is a quack. I'm seriously considering contacting child protective services even though it would probably anger my niece. My concern is that her son will be told so often that's he's abnormal, he'll start to believe it. Plus I'm worried about the potential health effects of all the pills she's giving him.

Any advice anybody? Know this isn't a lupus issue, but hoping somebody out there has an idea that can help.

pinkjmf
08-29-2006, 08:57 AM
I can understand your concern. I have a son that has ADHD and Autism. He is a handful. He has always had delays, He didn't begin to talk till he was almost 4 years old. He is very bright but into everything I can't leave him a minute without him getting into something it is so tiring. As I understand it there is a big umbrella to which the autism spectrum covers. Some people are high functioning and others not. I think that everyone thinks that autistic people are like "rainman" from the movies.But alot of them can hold conversations without anyone even knowing what is a wrong with them. My son will give you eye contact about 50% of the time. We have never told him that he is any different from the other children, after a while the other kids pickup something is different but none has ever asked what is a wrong with him. Everyone just knows that's Jeremiah and that is just the way God made him.
It is very easy at first to want to protect your child and to tell the other parents of his playmates that he has autism. But now I don't tell anyone unless they ask and that hardly happens.
I feel for your niece. My only advice to her is to love her child and take it one day at a time.I hope that helps, this is from my heart.

MARYCAIN
08-29-2006, 09:32 AM
I UNDERSTAND THAT MANY AUTISTIC CHILDREN ARE VERY HIGH FUNCTIONING AND MIGHT APPEAR NORMAL ON FIRST GLANCE. MY CONCERN IS I HAVE WORKED WITH AUTISTIC CHILDREN BEFORE - ALTHOUGH I HAVEN'T TAUGHT IN SEVERAL YEARS, I HAVE A RANK II TEACHING CERTIFICATE AND AM CERTIFIED IN LEARNING AND BEHAVIORAL DISORDERS. ZACH, MY GREAT-NEPHEW, SHOWS ABSOLTUELY NO SIGNS OF ANY DEVELOPMENTAL DISORDER, AND TWO DIFFERENT PEDIATRIC NEUROLOGISTS HAVE BOTH SAID HE IS NOT AUTISTIC, NOR DOES HE HAVE ADD/ADHD. THE ONLY PERSON WHO HAS SAID HE IS AUTISTIC IS THIS SO-CALLED THERAPIST, WHO HAS ABSOLUTELY NO MEDICAL TRAINING, AND IS BASICALLY USING THE DIAGNOSIS TO SELL MY NIECE HUNDREDS OF DOLLARS WORTH OF VITAMINS, SUPPLEMENTS AND "THERAPY' TAPES - NONE OF WHICH HAVE BEEN SHOWN TO HAVE ANY MEDICAL BENEFIT IN AUTISM OR PDD.

IF THIS GUY SIMPLY RECOMMENDED VITAMINS OR SUPPLEMENTS THAT COULD BR PURCHASED IN ANY DRUG STORE, I WOULDN'T BE AS SUSPICIOUS, BUT THESE ARE ITEMS THAT CAN ONLY BE PURCHASED THROUGH HIM. IN MY BOOK, ANYBODY WHO PROMISES YOU A MIRACLE CURE FOR ANYTHING IS JUST A MODERN-DAY VERSION OF THE SNAKE-OIL SALESMAN.

THANKS FOR LETTING ME VENT - I REALLY APPRECIATE YOUR INPUT.

pinkjmf
08-29-2006, 10:25 AM
RED FLAG------You are ABSOLUTLEY correct. I would not believe what that so called doctor said. Your niece needs to called her better business bureau to see if he has any complaints against him.
If the real medical doctors say that he doesn't have autism, I would believe them over this person.

browneyedgirl53
08-29-2006, 11:38 AM
I AGREE 200% WITH JESSICA'S STATEMENT AND RECOMMENDATIONS.
Also check on his license and credentials; while she's at it; check with the BBB to see if any complaints have been filed.

Best wishes,
Browneyedgirl

JenHa55
09-01-2006, 06:13 PM
I do have experience in this field as I used to work in a Pediatric office where three of the doctors specialized in autism. There are a few great websites and resources online. Where I live, in Canada, you have to have three medical practitioners to diagnose autism and receive government funding for - you need a pediatrician that specializes in developmental disorders, you need to have a psychiatrist and a speech therapist. There is a huge spectrum for diagnoses - everything from Asperger's syndrome to a very, very severe autism. Some children, you would be surprised that they fall into that spectrum, but it is quite a large range.

If it were my child, I would accept a diagnosis of autism spectrum disorder ONLY if more than one doctor gave my child that designation. I am not sure the credentials of the doctor seen, even naturopathic doctors have training but I would seriously need to have medical doctors telling me that before I bought into treatments that cost money.

I hope it's alright for me to give this info out, but www.autismsocietycanada.ca is the website the pediatricians here give out as a resource, I am sure there is one in the United States as well. In Canada you can get government funding for autism and treatments available like hyperbaric treatments, ABA therapy etc, so here you need three doctors to okay the diagnosis.

Check into it more because high functioning autism can look like ADHD and vice versa, you really need someone experienced in the field to look at it. Just like with Lupus because Lupus mimicks other diseases like MS.

shushan88004
09-01-2006, 08:38 PM
I absolutely agree that this is full of red flags. I used to be on a medical team that diagnosed Autism in young children. There were several symptoms and behavioral issues that had to be met in order to be diagnosed.

And I would never agree to take the word of a "therapist" or professional who does not have the medical background of a physician to back him up. In order for me to be able to diagnose, I had to have the agreement from the physician....who was always a pediatrician with lots of Autism experience.

Have your neice get the book "Out of Sync Child" . It's great for children with Autism, but is also an excellent resource for typically developing children as well. I think every parent should be issued this book when their child is born.

Susan Wilkinson, OTR/L
Occupational Therapist

MARYCAIN
09-02-2006, 06:30 AM
In looking at some of the research, I was stunned to see that autism now affects one in every 166 children , which seems to be an enormous increase. When I was doing my graduate training in education, not that long ago, we were taught the incidence of autusm was less than 1 in 1000. I wonder if the numbers are going up because doctors are getting better at diagnosis, or if some unknown environmental or genetic factor is causing the rise in cases.

Don't laugh, but I have wondered if the increased use of ultrasound monitoring during pregnancy has any effect on the children later in life. I know the OBs say it is safe and non-invasive, but have any long-term studies been done. It used to be that fetal ultrasound was only used in high-risk pregnancies, now it seems like every OB's office has one and uses it routinely. I have friends who've had 10 or more ultrasounds in the course of their pregnancy. So I do wonder.

Again, thank you so much for your advice and support.

JenHa55
09-02-2006, 09:40 AM
That's a good question about the ultrasound - there was a study done and they have found there was no evidence suggesting ultrasound was the cause. There was also a rumour going around about vaccinations but a really intensive study has now disproved that theory - the vaccinations do NOT cause autism.

It is believed that they understand it better and diagnosis is better and they put more "types" of autism on the spectrum rather than suggesting things like they are just mentally handicapped. There is a difference and before, a lot of autistic children were classified as mentally handicap, but with psycho-educational testing, the ADOS and ADI, they are better able to determine whether they are in the autism spectrum or indeed have cognitive deficits. So, I believe it is a better understanding of the illness.

I have also heard, and I don't know about current studies - that the older women are when having their children, the more developmental disabilities are possible, like autism...

MARYCAIN
09-02-2006, 09:51 AM
A CPUPLE OF MY FRIENDS ARE PREGNANT RIGHT NOW - IN FACT I'VE SPENT THE MORNING MAKING BABY CARDS.

IF THERE IS A LINK WITH THE AGE OF THE MOTHER, IT MIGHT MAKE SENSE THAT THE NUMBER OF CASES WOULD RISE AS MORE AND MORE WOMEN PUT OFF HAVING KIDS UNTIL THEIR THIRTIES OR LATER. ONE OF THE WOMEN I WORK WITH IS PREGNANT WITH HER FIRST CHILD AT AGE 42. I CAN'T IMAGINE - IT'S HARD ENOUGH IN YOUR TWENTIES AND THIRTIES.

Leigh Anne Johnson
09-05-2006, 10:34 PM
My seven year old son has Autism and it took six years to get a diagnosis. He has always been normal in most aspects. You wouldn't have any idea that he has Autism unless you spent as much time with him as I do. Autism is a spectrum of behaviors that range from severe to mild just like Lupus. In a child with mild Autism like my son, it would usually be learning difficulties, dramatic reaction or nonreactive to discipline or change in environment. Including dramatic fits. Some children are unable to empathize or sympathise with others and animals. Such as in hitting or falling down. They don't seem to recognise emotions in others such as if someone is upset or in pain. Not all Autistic Children have speech problems or alarming delays. The true test is how their mind works. Like when you read A B C you know whats next because your mind has formatted it in that Order. A Child with Autism's mind may format the information as B A C D F E, making understanding and responding appropriate difficult . Its not that they don't know the information its just stored differently and with Autism its not just in a educational manner it is in all aspects of life. Social, health, education, self awareness. Again it is a spectrum, with variants. I kept telling the doctors something was off. They just said he was just a dramatic child with a short temper but after years of pushing we finally got an answer, and it was only because I suggested that he might be ADHD. Some children with mild Autism are ADD, Or ADHD, and with the right med and teaching techniques they can excel as fast as normal children and a lot of the time Autism and genius go hand and hand. Some researchers have suggested that Albert Einstein was Autistic and look what he accomplished. Anyhow I asked for a referral to a psychologist, for testing. The sad part is that I should have known I am a Psychology Major. But as the saying holds true you can help others but not your own family, Love is blind. That's why doctors don't treat family very often. Hope I have helped You to understand a little better how Autism works. But I would be concerned About anyone claiming to be able to treat or diagnose Autism without a PHD, in Psychology. The Guy Might be right but she shouldn't take his word for it. She needs to take him to a specialist with a PHD. Or I would call CPS. If you have any questions I can answer just e-mail me and we can talk. Also I am New, this is my first post and I am comforted by the wealth of Info. Its nice to see that its not only in my head :D (Lupus).

Saysusie
09-06-2006, 07:38 AM
Hi Leigh Ann :lol:
I wanted to thank you so much for the informative post. It was also comforting to have someone with so much information about Autism answer questions.
Also, I wanted to welcome you to our forum and to our family. We are happy that you are here and that you are willing to share with us!!

Peace and Blessings
Saysusie