Monday, June 11, 2007

Autism and Denial


The New York Post has been the next media source to focus on the concern that John Travolta and Kelly Preston's son, Jett Travolta age 15, has Autism .

For many years now, there have been rumors about the Travolta's being in denial about their son's Autism, relying on their religion to address the situation. According to Scientology teachings, Jett has been given the status of "degraded" where the church says he can cure himself by working harder on the church's teachings. The Travoltas deny that Jett has Autism, claiming that their son's condition is Kawasaki syndrome, a disease characterized by high fever, skin rash and swelling of the lymph nodes.

I feel sad about this because there are some treatments for Autism that would not involve medication - something Scientology disdains. For example, Applied Behavior Analysis would be helpful. But the religion denies the existence of any mental/neurological disorders, so it seems that nothing will be done for this boy.

Of interest, is that Travolta's older brother, Joey Travolta , produced the widely acclaimed documentary Normal People Scare Me - a film about how Autistic people see the rest of the world. The documentary was directed by Taylor Cross, an Autistic 17 year old film-maker.

There are many high profile individuals who have brought light to Autism. Actors like Sylvester Stallone, Laura San Giacomo, Joe Mantegna, Gary Cole, Holly Robinson, Ed Asner, Aidan Quinn and Jenny McCarthy have spoken openly about their own children who have Autism. Famous athletes Doug Flutie and Dan Marino have Autism foundations. The Australian band The Vines singer, Craig Nicholls, has brought light to Asperger's - and singer Toni Braxton, who has a son with Autism, was just named the National Celebrity Spokesperson for the advocacy organization Autism Speaks


56 comments:

Dream Writer said...

When it comes to our children, parents want what is best for their children including physical, mental, and emotional well-being.

As a mother of Four Children -(ages 7 - 22 years old), I have met many, many, many parents and I cannot tell you how many I have met that are in such denial about their kids behaviors and mental well-being.

The more they are in denial - the more the kids suffer in the long run.

Parents always believe that their Precious Johnny or Jane is perfect...but they are WRONG! No one is perfect.

If this is true about "My Danny Zuco - I will be very upset and disappointed in him...

Dr. Deb said...

I understand that each and every parent has a right to choose how they raise their child. But sometimes denial can be seen as abusive. I think that is what many of the Autism and Media outlets are highlighting.

I feel sad for all involved.

Dream Writer said...

I totally agree! It is a form of abuse - I thought about that with this one particular woman I Know...

Her child was Diagnosed with ADD - the medication doesn't work and 3 years later the kid (5th grade) has been suspended so many times, detention, she is very abusive towards her siblings, and she has been disciplined by the school countless of times it is not even funny.

Personally, I had my thoughts of Bipolar, but there is NO talking to this mother.

Misty said...

I am a firm believer that parents need to be the strongest advocate for their children.

If there were a possibility that a child had a medical condition (be it physical, mental or emotional), then it is our responsibility to seek out all avenues to properly diagnos and treat it to give our children an opportunity of having a more fulfilling quality of life.

Sometimes its not simply about what treatment or medicine the child can take, but what behaviour modifications we can make in ourselves that will help the child better communicate, interact with others or perceive his or her surroundings.

Although Scientology has gotten a lot of press, I haven't myself looked into what core beliefs make up its foundation. I couldn't endorse a belief system where the child's best interests is not first and foremost.

Great article!

Donna said...

You wrote that "Jett has been given the status of 'degraded' where the church says he can cure himself by working harder on the church's teachings."

That poor child...what an awful label that that stupid "church" has assigned to him. It's another form of abuse. Why do his parents put up with that and allow it???

Godwhacker said...

How really sad I feel for the child. I'm all for anyone who wants to debate the intricacies of the mind/body relationship, but debate is done with facts and the overwhelming facts are that body chemistry, mechanics and the mind are interwoven in a way that is obvious to honest exploration.

The broad generalities that Scientology throws around are unfortunate for the adults that choose to believe them. It borders on criminal when these beliefs are expanded to the determinate of a child.

Fallen Angels said...

Recently I have been seeing a couple info spots (commercials) on tv with some people that weren't in your list. One spot has the voice over done by Mariska Hagartey (LOVE her!). The other is one I have only seen a couple times now...very new. I recognized most of the speakers but can't put names to faces. It's the "Autism Awareness Rocks" spot...all the speakers are rock stars (hard rock/heavy metal). I know for sure that two members of Kiss are in it and it ends with Steven Tyler (Aerosmith...love him too!). I am really glad to see that autism is getting more focus, a dear friend is raising twins, one with autism and the other with asperger's (I believe). I bet she will comment!

As for John Travolta...he's just dropped several rungs in my opinion of him. I knew he was a scientologist but he has never (that I know of) spoken publically about any aspect of scientology. I had *hoped* he was like many other people who believe some but not all teachings of their church.

Warrier

Ms.L said...

This is a great post and it's so true!
I know first hand how denial can hurt.
When I was a little girl,I had what I now recognize are autistic like symptoms. I have no idea what was 'wrong' with me because my mother was the queen of denial(heh) and didn't seek help for me.
A teacher told her that I was "disturbed" and she took great offense to that and moved me to another school where I continued to refuse to speak to others unless I felt safe and secure. I literally could not speak and would often pee my pants because I couldn't ask to go to the washroom,or drink paint water instead of going to the fountain.
I rocked,I avoided eye contact..I remember it all felt WAY too intense. As a kid I knew there was something wrong with me and felt great shame but was pretty powerless to do anything. Over the years I learned how to cope with things and here I am but I will always wonder what my life could have/would have been like if I had been taken to a doctor.

I completely agree that denial like this is a form of abuse. Having a proper diagnosis isn't the end of the world and it is no reflection on the parents.My daughter has ADHD,we're all alive and kicking. Just knowing what was up,was help enough! My mother only thought in terms of herself and how things effected her and I'm the one paying for it.

Dr. Deb said...

Dear Dream,
It is hard to see when parents make different parenting choices than you would.

Dear Mysti,
I think it is so sad. Illness, disorder or disease should not be viewed as unreal things.

Dear Donna,
I didn't write that per se, it was written before and I included it in the post. Sad, indeed.

Dear GW,
There are many religions that do not allow medication, medical treatment, etc. I don't think a higher power would endorse suffering or restrict help.

Dear Fallen,
There are MANY celebs and high profile people who support the Autism cause. I highlighted the ones whose own children experience Autism.

Dear Ms. L,
Early intervetion is so important. For any issue.

~Deb

PalmTreeChick said...

Hmm, I guess I just don't "get" the whole scientology thing. Well, I understand how they can believe what they believe but in my mind I don't get it. I'm making no sense. I just wish they would get him the proper help that he needs.

Rose said...

Wow! I think I have lost some respect for John. Everything should be done to take care of their child. I see this as medical neglect. I can't undestand how people get so wrapped up in a religion that will allow a child to suffer rather than to treat the illness. I don't see any of the things that Scientologist believe in in the Bible- well I guess I haven't looked for anything....so I don't know if it is or not. What kind of Bible do they use anyway? Poor Jett!

Fallen Angels said...

Hey Deb...completely off topic...I did use the link you gave me and I can now comment about 90% of the time. A HUGE improvement!!

jane said...

Wow, that is really sad. Their belief system sounds more like a cult. And how horrible to give him a label such as "degraded". That subscribes to the old thought that our mental illness is our own fault.

mcewen said...

It's quite remarkable how many famous people can come out publicly about autism.
It can only benefit society at large and help give kids like mine an even break.
Best wishes

DrGwenn said...

One fact I can speak to as a pediatrician is that Kawasaki Syndrome does not have autistic features...they are clearly barking up the wrong tree there. Kawasaki is an immune disorder of sorts that is thought to be post viral and is treated with a medicine called IVIG...then the kids are followed for some potential heart issues.

Autism is true true and unrelated but autistic kids' bodies can and do get other illnesses and Kawasakis would be one potential, just being a child.

Denial is one of the most energy sucking emotions I can think of and the weight is places on a family enormous. I'd rather label my child autistic and move bolders to get the services needed to maximize quality of life than waste energy squishing a round peg into a square hole...but that's my style.

The immunization debate currently underway will be another interesting twist to this autism story.

Gwenn

Midwife with a Knife said...

In a way, I understand how they feel. I mean, autism is a fairly stigmatizing label.

However! You would think that as parents, they would want to get the best possible care and help for their child. A friend of mine was really relieved when her 16 year old son was diagnosed with Asperger's disorder. She was glad that there was something that they could help him with!

And to label a child as "degraded" is terrible.

Heidi said...

I think they will always be in denial about their son and what everyone beleive's that he has.

It's so sad. MOre awareness is needed. I'm glad you posted this.

Jade said...

Wow so many things in that post grabbed me. The Denial, the "degraded" label .. how sad. The company I work for is based on ABA. The results are amazing and in very short periods of time. I can testify from my own personal experiences that early intervention works miracles with autistic children.
Religion has many great purposes in life, curing autism is not one of them. I hope the new rise in autism awareness stirs something in them to do more research on the topic and their options.
Thanks for the good post Deb!

east village idiot said...

Dr. Deb -

What is at the root of all this autism? It must be environmental. My best friend's son is autistic and I know three of moms with autistic children. Plus my son's computer teacher just had a young child diagnosed at autistic. All extremely bright, upper middle class women with all the benefits of good health, etc.

What the hell is up? I think it might be the high levels of mercury. Two women in my office just got tested for mercury and their numbers were off the charts.
They are both 40 - upper middle class, etc.

I have seen up close what a struggle it is for my friend to deal with her son's autism. She left her law career to dedicate herself to him full time. All the behavior modification, and various therapies (no drugs) - have proven extremely helpful. he has made great strides through all his hard work. shame on the dianetics people who leave these children to suffer.

Lynn said...

Religion is the PERFECT place for someone who wants to live in denial. Many of the world's major religions deny a lot of things -- especially child abuse -- for as long as people let them get away with it.

John Counsel said...

In my experience and observation, the #1 form of denial by parents in respect of their children's autism spectrum disorders is the reality that it's so often hereditary.

The kids got it from one parent or the other -- or both -- in so many cases.

This is the case with me, a third generation Aspie with Aspie children and grandchildren.

But raise the possibility and there's instant defensiveness and denial that it could possibly be.

Is it such a stigma? I've never found it to be a problem, personally.

John

PTS said...

What Hypocrites!!!
Kelly Preston (Travolta's wife) not only shills for scientology, she also advertises for "Neutrogena" skin cream. Neutrogena is owned by Johnson & Johnson. J&J owns Ortho McNeil Neurologics who produce "Haldol", and Janssen who produces "Risperdal" and "Concerta". These drugs are used in the treatment of ADD and Postpartum Depression.
Scientology strongly opposes the use of any type of "Psyche"(their term) drugs.
I have met Travolta and also got to see Jett, who at age of 13, was sitting in front of the T.V. watching Barney. Jett is obese and gets very little exercise. Jett is confined to the hotel room with his male nannies, while daddy goes to the spa to hit on the male massage therapists.
Scientology will never help Jett, as he is considered a "degraded being". According to their tenants.
Jett is below 2.0 on scientology's "tone scale". The following is a quote from L. Ron Hubbard in "Science of Survival"
Quote
"There are only two answers for the handling of people from 2.0 down on the tone scale, neither of which has anything to do with reasoning with them or listening to their justification of their acts. The first is to raise them on the tone scale by un-enturbulating some of their theta by any one of the three valid processes. The other is to dispose of them quietly and without sorrow.
For more information on the cult of scientology go to xenu.net

Todd and in Charge said...

This is fascinating, thank you. I wonder where along the autism spectrum Travolta's son resides.

Are you following the case, finally at the trial stages, over whether or not autism can be caused by the MMM vaccine?

poody said...

wow I did not know this about John Travolta. I knew he was a scientologist but I never heard any crazy things about him till now. I am a nurse and have dealt first hand with the scientologist and their carzy notions. It never ceases to amaze me how much religion can mess a person's life up!

Nancy said...

This one hits home. My niece has Aspergers Syndrome and her parents had fought a tough battle to get her to be the best she can be.
I feel as a parent it is abuse if your are not an advocate for your child. Our children only have one chance in this crazy mixed up world to make it and if the parents don't help lead the kids down the right path who the heck is.
Where are his teachers and pediatricians or is the Scientology
culture a inclusive society. Do all doc's and teachings come from the church.
I feel for the teen, he could be a 'healthy normal' kids with some help.

Dr. Deb said...

Dear Palmtree,
So sad....

Dear Rose,
I really do not know alot about the religion, but what I DO know disturbs me.

Dear FAllen,
So glad you are getting ALMOST 100%.

Dear Jane,
I had to read that reference twice. I thought I read the word degrafed wrong. But, I didn't read it wrong.

Dear Mcewen,
Bringing light to ANY issue helps to dilute stigma. I'm all for that!

Dear Dr. Gwenn,
Interesting facts you shared. So maybe he could have Kawasaki in addition to Autism.

Dear MWAK,
Stigma is difficult but one can rise above it with education and illumination. Ignoramce keeps myths going.

Dear Heidi,
I had read rumblings about this over the last year, but it has been increasingly printed in the media outlets. Then I read the Post article.

Dear Jade,
Religion can be a healing, spiritual wonderful aspect in a person't life...but anything that is totalitarian is unhealthy. I feel sad all around with regard to this issue.

Dear EVI,
We know that a genetics plays a large part, placing people in a predisposition for Autism. The key would be to find out what does set it off. It is an epidemic!

Dear Lynn,
THAT was so well said. Too narrow a focus on life - only one right way of living - can place many in denial. And feel absolutely righteous about their point of view. Dangerous.

Dear John,
I think it is wonderful that you don't experience the stigma element!!

Dear PTS,
Thanks for visiting and for the information (so scary) and the link.

Dear TAIC,
I resist speculating - but I really do not have enough information. I can see from many of the photos of Jett that something is up, so to speak. And I am following the autism case. You too?

Dear Poody,
I thank you for visiting and commenting. In my experience, I have never met anyone who is a Scientologist. I have met other indiviudals who were in fanatical groups. The rigid thinking and scary belief system left me jarred.

Dear Nancy,
I don't know the inner workings of the religion, but I can say that they are anti medication, anti mental/psychological/neuro-biological illness.

~Deb

kath said...

Damn,Damn,Damn,Damn,Damn,Damn,Damn,Damn,

That poor kid....
the best gains are made with early intervention....
that toe walk.... so telling..
latest autism news
http://tinyurl.com/ywzda8

Deb... there are days that I rant and wail... and you have seen some of it... about special needs kids and more specifically their parents.
I come home every day and have to consciously let it go. sometimes that works, other times.. not so much..

denial can be abusive... you are so right... so can giving up. we have a parent who will do nothing "extra" because her boy is going to die before long so, why? she asks

why indeed I ask.

Reiki 4 Life said...

thank you
:)

Marj aka Thriver said...

Hhhmmmm...denial keeps everyone in the dark. Yuck! Raising awareness is the key....speaking of which...YOU ARE CORDIALLY INVITED TO JOIN US FOR THE FIRST ANNIVERSARY OF THE BLOG CARNIVAL AGAINST CHILD ABUSE. I'd love to have you with us for the first anniversary! The deadline is tues. 6/19.

dragonflyfilly said...

how sad, and i agree with one commenter who said that JT has dropped a couple of rungs in their opinion - as he has in mine!

As you know i used to work with autistic children between the ages of 3 - 6, and i just LOVED IT. I had a lot of success in very small areas of teaching them new words, and simple skills. And i love autistic individuals in general (they are so smart and so interesting).

What a HUGE dis-service these parents are doing to their child. I agree with you Deb that neglecting to get proper treatment for this child is abusive!

Thinking about Scientology and Hollywood - maybe it is not so surprising that a lot of people living there are not able to distinguish between Fantasy and Reality.

My message to Jonny: - Get a Grip!

Wanda's Wings said...

I agree with several of the above. It is abusive not to give your child as much help as possible. I hope the best for the child and maybe his parents will wake up and see the light/

jumpinginpuddles said...

yeh just like they try to explain away epilepsy. All i could see when i read this was 1800's and andequated outdated scary systems.
thankgoodness our son doesnt have to live with the shame because hes autistic stupid religions

OHN said...

This makes me almost physically ill. We tried so hard to find out what was "wrong" with our son. We knew he had had little idiosyncrasies as a child but not until we started him on some mild medication did we see the AMAZING difference in how he was able to interact with other people and enjoy life. It breaks my heart that there are kids out there whose parents are more concerned with image than doing EVERYTHING they can to help their child.

tricia said...

I feel sorry for John Travolta's son.

My nephew was diagnosed with Autisim three years ago and his social skills have improved with treatment. It is such a joy to see my nephew aquire new skills.

All children deserve a chance to thrive and grow in this world no matter what the circumstances are.

Traci said...

I cannot even begin to explain my feelings about this post of yours. I'll just leave it with this: I am disgusted by the lack of care and empathy for this child. His parents should be mmmmm...yea...I can't even print what I think.

puhpaul said...

Autism is such a sad disorder, the people suffering from it live in such a world of isolation. We have two students with Asperger's Syndrome who have made remarkable progress in our school. All thanks to the support of our special ed teacher and his assistants, as well as the parents of the two students. Without the involvement of the families and the schools, these kids stand little chance of success.
Thanks for posting this, paul

OCD On A Stick said...

Great post! Thanks to everyone who brings more light to Autism.

Dr. Deb, thanks for the comments on my blog. It was my pleasure to sign your guest book.

Cazzie!!! said...

I liked this post because I am just learning about autism through some other blogs that I read on a day to day basis. I see how these lovely mum's have grown through their experiences in their daily lives, their journals mark where they have been (ie, since diagnosis) and how far they have come in the now.
The big problem I am reading about is funding for the children and teacher's aides for the children when they are assimilated into schools with children who apparently have none of these diagnosis.
Our neighbour has a child who is autistic, I know they work hard at doing all they can to provide support for their child his sibling too. Sometimes, people forget there is more than just one person affected in a family, everyone needs time out at some point someyimes.

Ron in Houston said...

Since I have ADD, I'm just fascinated by all of these sensory processing disorders.

My son is very finicky about the things that touch his skin. I don't think he's autistic, but he has a lot of autistic traits.

It's just another case of stigma. Hopefully someday it won't be viewed as "bad" or "negative" to be autistic.

Dr. Deb said...

Dear Kath,
I know you are well versed in this topic. 'Tis sad.

Dear Reiki,
You're welcome. Hope to see you back soon.

Dear MArj,
Sending an old post that might fit in the Carnival.

Dear Dragon,
It is a shame that a belief system denies helpful treatment. We have but one life on this blue marble. Good point about the hollywood connection.

Dear Wanda,
My heart aches for this boy. Though, the life he leads is the only one he knows....so he may not realize what COULD be.

Dear JIP,
Good points.

Dear OHN,
Families who have seen the difference before and after intervention say the same things.

Dear Tricia,
I do as well feel sad for this boy.

Dear Traci,
I can sense what you mean. When I first read about this almost a year ago, I was stunned and sickened. Then sadness prevailed.

Dear Paul,
You see it in your work all the time. Intervention with &/or without medication can offer so much to children who have an autistim or the related spectrums.

Dear OCD,
Awareness is essential!

Dear Cazzie,
One of the great things in the blogosphere is the ability to share and learn. Since I started blogging, I feel so enriched!

Dear Ron,
I also have family members who have ADD and a wide array of other neurobiological issues. I think we are scratching the surface of these neurobiological issues. Technology and education help. Rigid thinking and ill-formed ideas worsen the cause.

Peace out,
Deb

kath said...

Interestingly

I took info from this article and another.. and posted in on another
site. A message board. Many there are
saying that it probably is not autism..denial is rampant.

I do not get it...

I have read several very interesting sites, thanks to this post.... thanks Deb!

Dr. Deb said...

Dear Mel,
Thank you again.

Dear Kath,
Denial *is* a very powerful mechanism. As we have worked with children who have neurbiological disorders, we know what's truly going on.

~Deb

Isaura said...

Its really interesting that the picture you have posted shows him up on his tip toes. Classic sign of sensory integration disorder that many of the PDD-nos babies that I work with display. They love all kinds of pressure and get that from walking on their tip toes. Enjoyed your post!

Sarebear said...

I think they are so invested in how much support they've given Scientology, that to back off from it would be beyond humiliating . . . if they haven't by now, I don't think they will.

My going on 9yo daughter was diagnosed when she was 6.5 with high-functioning autism, although no one can tell (except maybe those like Kath and Deb who are familiar with the subtleties.) Well, people think she "just doesn't get it" sometimes, when they are interacting with her, but she seems so normal to them (and she IS normal, I do not use terms like normal kids and then those with autism; I use autistic and non-autistic), they also often think I've done something "wrong" as a parent. Or t hat's what I think they think.

Anyway, the psych intern (well, she got her phd two weeks later) diagnosed her, after 5 weeks of appointments and testing. But without a co-existing diagnosis of anxiety, the autism wouldn't be covered by most. So we were basically sent out the door, with no options, resources, or knowing where to go from there.

So, I've done nothing, for her, in the way of well I don't even know what she needs. I barely know what OT might be, let alone what all else there might be. And having repeatedly heard that early intervention makes all the difference, and she keeps getting older, well, it's just more reason to hate myself.

I got a packet of pamphlets, booklets, info from Allies with Families, but those just are, pieces of paper with the same info on them, basically. They didn't help me have any idea or any resources or anything, so. I guess I suck. We don't have money for anything anyway.

Wendy C. said...

My youngest son was diagnosed with an Autism "spectrum" disorder called PDD-NOS. While he is in some ways different than his peers, he is an amazing young man who is a joy to be around. I do have to remind myself that I cannot put this on the back burner all the time, but for the most part - he is given the freedom and respect due him as an individual...not just an individual with a diagnosis, thankfully.

Dr. Deb said...

Dear Wendy,
As you know, there is a wide range in the spectrum. You sound like an awesome mother and he a wonderful son.

~Deb

Anonymous said...

I grew up LOVING Grease and mostly because of John Travolta. But the other day; I was looking in the US mag. and not even being up to date with the whole Travolta family, I took one look at Jett; and as a teacher for children with Autism, I took one look at Jett and knew he was condenced with this!

How can one be so influenced by a Religion and not admit your child has Autism?? It isn't a BAD thing! Many people live with it EVERYDAY just like they do!!!

I am now a John Travolta disliker!!!

Anonymous said...

As the father of an Autistic child, I find Mr. Travolta's behavior abhorrent.

Mr. Travolta, you labeled your child "Degraded??" You should NOT have any more children as you have not grapsed what it means to be a father.

CindyPDX said...

I just saw on ABC News tonight (Jan 2 2008) that his son has died today. He slipped in the bathtub and hit his head and had convulsions. I remembered your article and wanted to give an update on it. It all breaks my heart. One of our 5 yr old twin son's regressed into Autism around 34 months old. "Toe walking" started up and gradually became more frequent along with other behaviors. He toe walks so much now and in such a dangerous way, I have to hold him constantly lest he fall and hurt himself. Just walking a block to his school is a huge struggle. It's a nightmare... Kaiser won't help, the school he attends to isn't working on this, we don't have the money for private therapy. Boots, shoes, braces are not working. My son "toe walking" looks much like how Travolta's son walks only he's five.

Now hearing about what happened to Travolta's son -- I can picture how and why it happened.

Such a sad tragedy!

Dr. Deb said...

This is SO very tragic...

Anonymous said...

Like Cindy, I just found out that Jett has died, apparenjtly from a seizure. My heart goes out to the family, most especially to his mother; there are some some things that are unbearable, especially the death of a child.
I would like, however, to address some of the previous comments (perhaps too late). My son has toe-walked almost since he started walking and he has had social issues. For all those mothers who are "advocates for children", I wonder if you would be so open if it was your child instead of someone else's?
Perhaps I was in severe denial, but I did not notice anything with my son (outside of walking on tippy-toes), until he went to kindergarten. Some have said that denial was death to the child, but I have to honestly say that I did not know. I took him to a doctor who diagnosed him with ADHD. I initially tried natural and holistic methods, which did not work, so turned I to the conventional (over-priced prescriptions)methods. I almost felt like my son was an experiment by the doctors and the pharmaceutical companies. Two years ago, he was also diagnosed with Bi-polar, which of course led to other medications. I have read everything possible about both diseases, even looked up symptoms of autism, and to be quite honest, I'm at a loss. I do not know if the doctors look for the easy answer, or I am, but what I do know is I've gone everywhere to help my son. For those who say we parents who live in denial are killing our children are ignorant and cruel. I want to help my child; I don't care what he has (although that really is relative; we all have something according to today's society), I just want to know the problem we need to deal with, and deal with it.

Dr. Deb said...

Dear Anon,
I always want a person to go to the best specialist in their city. Sometimes it means going even further out of your location to get a diagnosis. The diagnostic process should be very involved. And it is importnat to consider the possibility that there may be more than one thing going on -- whether it is a medical, psychological &/or neurobiological. The thing that matters most is that you want to address your son's issues and get him the best treatment out there. That is key. There is no denying that you are willing to do anything for your child. I think what makes readers frustrated is that the denial of a any illness or disorder can risk a child's quality of life. Do some research about the BEST children's hospital and their multidisciplinary diagnostic teams. Maybe you can find some answers there.

Anonymous said...

Dr. Deb,
I am the Aunt of a 14 year old who, I think, has a high-functioning form of Autism or Asberbers (sp?). He is reading below grade level and has just had to repeat an algebra class. My sister claims that he has "hyperlexia". There is a lot of denial going on. The child eats only a handful of foods, only drinks Sprite (no water). He eats with his hands and has trouble making eye contact. The bottom line is that I'd like to help him. Every effort I make to help him (hiring a tutor, offering to participate in weekly book reports--helping him visualize the stories to improve his comprehension- planning hikes and other excursions to get him away from the computer/video games--is undermined by my sister. What can I do?? My sister is so selfish. How can I help him?? He does not want to do the work and his mother will not back me up.

Dr. Deb said...

Dear Anon,
Denial and rationalization are very powerful defenses the mind uses to shield threatening information from consciousness. I don't offer treatment or advice here, but I can suggest that you find a local Autism organization and find support there. IT can be very hard to witness such things, so my heart goes out to you.

CindyPDX said...

After more things that are coming out now, and things that we will never know (now), and the anger and denial that is still coming forth about AUTISM (and Scientology) why am I not only feeling such pain but anger? I wish I did not care. But it hurts.

I meant to tell you Dr. Deb, when I found your article with this picture you have, shortly after we got the dx of our one twin son back on Aug 13 2007 (a day we'll never forget) but when I found your article I fell to my knees and cried. And I cry more today.. not only for Jett, but what the future holds for our son, Cameron.
The way Jett "toe walks" haunts me.. is this what I will see when my son turns his age?

I wanted to share with you a great tribute I found of JETT

I wish John or whoever speaking for him would now NOT say they are "outraged" that people think Jett had Autism. Why don't they just keep quiet like they have over the years about Jett. Only giving pictures of him. They never showed him in movies (like Ella), or on talk shows talking and interacting. They are not only going to anger other religious groups, but anger the Autism and other Disability communities as well as those that have had Kawasaki Syndrome.

They call his death due to a seizure, and are cremating him soon. End of story.

But I don't think this is going away anytime soon. Do you?

Anonymous said...

I have an autistic teen. Toe walking is only associated with autism. I feel bad for the Travoltas but the whole story makes me angry.