my son has aspergers, and so i watched her when she was on oprah.  the thing i found truly silly about her little rant was when oprah asked her when she thought that her kid had autism, and she pointed to the MMR as the culprit.

oprah then stated that there is no research anywhere that has backed that claim up, to which she answered 'well, i have my own science at home, his name is...' and the audience went wild.

please.  just cause you think that your kid got autism from the MMR shot doesn't make it true.

What is the one of the worst fears of a parent of a child undergoing treatment for leukemia -- chicken pox.

What was one of the high killers of children....polio.

Luckily, these aren't heard of often anymore...or wait...that isn't luck..that is immunization..

Hi momsfruitcake,

Her passion is impressive.  Her trajectory needs some work.  Hitler allegedly was also quite passionate.

Which is not to say that on a scale of decency and morality McCarthy and Hitler are two peas in a pod.  It does say that passion alone just isn't enough.

McCarthy's insistence that the MMR immunizations cause Autism fly in the face of actual research which has mapped chromosomal predispositions to Autism in genetic studies.

It is most likely that there is correlation between the MMR vaccinations and observable autistic behaviours noting that it is the milder manifestations on the Autism Spectrum of Disorders that are noticed in conjunction with the MMR vaccinations rather than the more severe disorders which are manifest almost from the point of birth.

Correlation is not causation.

Our son, diagnosed with PDD-NOS, was not diagnosed until the age of 9, and did not manifest any symptoms of an Autism Disorder until that point in time.  It is my conviction that what we saw most often was not symptomatic of an ASD but rather more symptomatic of a Bi-Polar Disorder which doctors would not consider until we left Newfoundland and Labrador for Ontario in 2005 when our son was then aged 13.

The ASD no doubt played a factor in the 6 years of medical and educational drama (during which time it became painfully obvious that general knowledge of Autism Spectrum Disorders lies well below what would be considered ignorant).

Grace and peace to you.

John

pinga and revjohn:  i totally agree with you guys. i think that it is very irresponsible to blame a vaccination that has proven to save so many young lives and erradicated such harmful childhood illnesses, with such conviction.  i have been discussing this on another thread as well.  i'll repost some of it here instead of retyping:

==========================================================

while at the doctor's office today i was reading an article in the decline of immunizations in the uk because of a doctor who on his own accord (no scientific proof whatsoever), linked the mmr vaccintation to autism.  even if this was the case, which to date there is no scientific evidence, more children would die uneccesarily from these diseases than those affected with autism.  people seem to forget that, once a disease is eradicated.  "they ask who dies from the measles these days?" and forget why.  the uk has now seen a sharp rise in the illness. 

the benefits, in my opinion, outweigh the risk.  although i might sing a different tune if it were my child affected by this disability.  hard to say until you have been through it.  i would be looking in more areas than one though.  i posted another thread about autism and jenny mccarthy's battle through it with her son.  she too blames the mmr vaccine.  her story, other than that, was very inspiring.

this isn't to say that without more research they may not conclude someday that the two are linked, which i hope would lead to a change in the vaccine itself, not a ban of it all together.  i'm totally for further research.  autism is on the rise and they must find some conclusive evidence for what triggers this.

=========================================================

revjohn:  i can only imagine your frustration.  do you think the problems you encountered were because of:

a) lack of scientific research

or

b) lack of research on the doctors part

to date what have you/doctors concluded?  how is your son doing?

aside from the mmr bashing, did you find any merit to jenny mccarthy's son overcoming autism?

for myself and my children, i always try the hollistic approach first, but cannot deny that modern medicine has a hand up in some areas.  i think it is important to keep them hand in hand.  i have had a great deal of success in treating many ailments through nutrition, supplements and herbal remedies.

j

Hi momsfruitcake,

Not really.  I think that the research is there and it is solidly pointing the finger to genetics as being causal for ASD and not anything environmental (such as diet or immunizations).  I think that like any branch of research there is a lag between what is known in the research community and what is known in society at large.

Milder forms on the Autism Spectrum of Disorders are not diagnosed when the child is young and the child typically meets all developmental milestones without any difficulty.  As they get older and are expected to socialize more the ASD becomes more evident although that won't be what is pinned on the child first.

Initially the socialization problems will be flagged as behavioural and  the suspected culprit will be bad parenting.  Try and treat Autism from a purely behavioural point of view and be prepared to fail.

Which is not to say behavioural components in addressing ASD are useless.  Part of what is required is actually understanding the behaviours so that they can be successfully modified.

Some have had success with modified diets.  Others haven't.

Again I think that the research is there I just don't know how much a GP or a Pediatrician who doesn't specialize in Autism can be expected to know about Autism in general.

Because it is a spectrum of disorders autism in one child doesn't look anything like autism in another child.  The film "The Rain Man" is not an even handed treatment of Autism.  It deals with an autistic savant and while they exist they aren't that common.  Apart from socialization problems there can also be stimulus issues which cause another pile of difficult behaviours.

In my home town we have a pediatrician who has a negative reputation for dealing with children and families.  He apparently is pretty accurate in diagnosing ASD, at least according to one of the foremost Canadian researchers in the area.  He will be retiring soon and even if he wasn't the simple fact that he rubs many the wrong way would be enough for some not to seek him out even if their need is right in his wheel house.

The diagnosis of PDD-NOS remains.  An additional diagnosis of Bi-Polar Disorder has been added as of 2005 and treatment for that has been a tremendous benefit for our son and our family.  When one understands how both disorders work it is easy to see how they can actually feed off of each other and quickly take the individual to a crisis state.

Our son is bright, needs modifications to curriculum and for classroom management issues is now working independantly at home with the exception of a co-operative education placement with a local bakery where he is well-regarded and praised for his hard work.

His co-op supervisor at the bakery actually researched ASD and in particular PDD-NOS to get a better handle on some of the learning obstacles that might present.  He has been able to give my son assignments that my son would really rather not have (peeling onions for example) and provide a context for where such work is necessary and vital to the bakery as a whole.

Our son has dealt with typical bakery incidents such as burning himself on the oven and has advised that we should not buy meat pies from this particular bakery because they use a lot of mushrooms.  He has paid close attention to recipes that he would like to try at home (realizing that he would need to scale back the ingredients since we do not bake 40 to 50 dozen cookies at a time.

He is very interested in learning how to decorate cakes which I'm guessing carries some prestige in the bakery.

Some Autism spectrums are easily overcome.  PDD-NOS and Asperger's for example are relatively mild (with respect to socialization problems) and typically allow for the individual to have some high-functioning intelligence which allows them to excel academically.

Autism will always be a part of the McCarthy reality.  It doesn't need to be the sole definer.  My son doesn't look "autistic".  My son doesn't engage in "stimming."  My son looks and acts much like any 15 year old boy would.  Which is part of the problem.  He presents as normal and so expectations for him to perform normally are where the problems lie.

Autism is something that can be lived with.  Individuals with an ASD will never be "normal" they will simply redefine what "normal" means.

The aspect of recovery which they are quick to point out does not mean cure I think has some basis in fact but I am not confident that they have attributed all elements of causation.

Diet for example.  Autism has a stimulus component.  Certain tastes and textures can adversely affect a child with autism.  While that child is being thus bothered there will be difficulty in the same child progressing in a normative developmental way.

I do not think that what McCarthy accomplished was a recovery from Autism.  I think what McCarthy accomplished was a recovery from a specific issue which Autism seized on to freeze development in her son.

The Autism did not go away or lessen at all.  Correlating issues did.  Making the barriers to development that are Autism related less of a barrier.  I think the issue at stake is the difference between correlation and causation and that issue is highlighted in McCarthy's insistence that her son was "normal" until immunized.

Her son may have been developing normally but most certainly had autism before any immunization was given.  The immunizations are age specific and they correlate with the expected levels of social interaction.  Which is sensible.  Giving immunizations for contagious diseases makes sense when the children recieving them become more socially active.  ASD's affecting socialization means that most are going to be noticed when the children with autism begin being more socially active.  It is a correlation not a causation.

It is also important to note that there is the spectre of a misdiagnosis in the McCarthy story.  Interestingly (from my perspective) McCarthy stays with Autism as a diagnosis.  Autism however is a spectrum including: 

• autism, classic autism, high functioning autism
• Autistic Disorder
• Asperger Syndrome or Asperger's Disorder
• Pervasive Developmental Disorder (PDD), and/or Autism Spectrum Disorder (ASD)

My son has a diagnosis of PDD-NOS but there are five possible diagnoses in the PDD area alone:

• Childhood Disintegrative Disorder (CDD)
• Rett's Disorder (RD)
• Autistic Disorder (AD)
• Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS)
• Asperger's Syndrome (AS)

This info is available from the Autism Society of Canada at:

http://www.autismsocietycanada.ca/understanding_autism/what_are_asds/index_e.html

So despite her passion there are some claims that she makes which I find problematic.  As the vice-President of the local chapter of Autism Ontario we have about 15 families involved with the group.  Every family knows the specifics of their diagnosis.  They know where their children fit on the spectrum.  McCarthy doesn't evidence the same knowledge from what I have read.

The doctor who gave the initial diagnosis is not named.  Why not? The initial diagnosis places Evan McCarthy on the Autism Spectrum of Disorders but doesn't say where specifically Evan was.  Why not?

Without those links verification becomes difficult.

As a parent of a child on the Autism Spectrum of Disorders there is nothing I would like to hear more than the discovery of a cure for Autism.  There is nothing I have feared more than the thought that my son's autism was caused by something I had some control over.

I respect McCarthy's passion.  I think it is seriously misplaced.  Autism is not an environmental illness.  Anecdotal evidence is not scientific research.  If her child does not have autism now it never had autism then.

Autism has global impact upon individuals.  It is not impossible that certain conditions allow the autism to manifest more strongly.  Force a child who is uncomfortable making eye contact to make eye contact and note how the stress levels in that child skyrocket.  Want the stress levels to decrease?  Don't force the child to make eye contact.  That isn't curing autism nor is it effecting a recovery from autism it is addressing the immediate symptom of autistic behaviour.

A child that is having problems with certain food textures should have their diet modified.  That is not curing autism that is dealing with a symptom.

When these symptoms are not magnified autism becomes more manageable and the individual experiences more success.

Diet is not my son's problem.  If we were to suddenly put him on the diet McCarthy advocates we are going to experience severe distress because my son won't eat that stuff.  If we insist that this is all he is getting I can promise you a regression in his social abilities.

In short.  If it works for you run with it.  Don't assume it will work for everyone.  Because for some the manifestation of autism has nothing to do with what is being eaten.  A young child may not be able to communicate that there is a diet issue so by all means try it but be looking for symptoms of dietary issue don't just assume.

Ms. McCarthy is very clear in what she believes Autism to be.  She is not alone in that assessment.  She also has no science to back her up on it.  Autism is very well researched.  Several medical research breakthroughs have been announced by international research teams studying the genetics of autism in the last five years or so.

Grace and peace to you.

John

j

[/quote]

my son has aspergers syndrome, and i've been helped IMMENSELY by his teachers at school.  the school he goes to has about 5-6 kids with autism, and so all the teachers are very well educated about it, and always get the non-autistic students to assist with them whenever possible.  its amazing how the autistic kids are so well integrated into the student body, and how my sons little quirks are so easily accepted as normal for him by everyone.  every year they have 'autism awareness week', where the kids and the parents can come in and learn about these special kids.  i am so BLESSED to have my son in this school.

i also have a good friend who is a massage therapist, and i find that if my son is struggling a bit, it helps him to see her for a few once a week sessions.  she teaches him how to breath and relax, and can give him a massage to work out the knots he gets in his back when he starts to ramp up. 

right now, he is totally consumed with hockey, and so we just let him do it... he spends HOURS at the rink at the park skating and shooting the puck around.  it really takes the edge off the kid to just run himself ragged like that.

Hi there - I missed the broadcast.  My son is 12 and is on the spectrum. He was diagnosed with Autism at 4 but is considered more Aspergers now.  I definitely saw it coming before vaccinations and my husband and I both display several markers of ASD so for us it is probably genetic.  I don't know if it started in our family from some other influence or not but I expect it was several generations ago.

I am currently reading Freaks, Geeks and Asperger's Syndrom - what a great book - written by a boy who is or was when he wrote it about the age of my son.   We are just dealing with having to actually sit our son down and tell him his diagnosis.  We decided not to when he was 4 thinking that labeling him might limit how far he could go.  Now I am not so sure if that was wise or not, but it is what it is.  And at 12 turning 13 we are way over due to discuss it with him.   I am quite worried about how he will take it, but I think it is his right to know now perhaps it always has been.  One of the challenges has been getting my husband on board.  He wants to sugar coat it and tell him he is Learning Disabled even now at 13.  Ugh.  I think we really have to stop lying to our son and trust that he will handle it.  At nearly 13 I think it is time for him to be included in discussions about his life, and decisions about it.     Anyone been in this situation?

our son knew right away, cause he was in the room when the pediatrician made the diagnosis.  the way he described it, my son felt gifted, not disabled.

Some of the reading we have done has suggested that we have someone other than us should actually tell him so we were then debating about having our pediatrician tell him.  I think we are leaning towards us telling him and then having an appointment with the pediatrician soon after for him to be able to ask any of the more technical questions he may have.   The pediatrician may be able to handle it better than me - struggle not to cry when thinking of telling him, or my husband, still hasn't accepted it himself.   I may contact the peditrician and just see what he thinks about the best way to handle it is.  He is one of those people who is in the right profession.  He is brilliant and amazing with kids. 

Elby - have you read Mel Levine?  The Mind that's Mine?  He writes that children with special challenges know they are "different" and that it is empowering for them to be able to name their challenge, what its effects are, and what they can do to either overcome it or live more easily with it.  It helps them to know that their challenges aren't the result of some personal flaw, and that their differences aren't their fault;  he also says that it's so important to make it clear that everyone has their differences - their own unique strengths and weaknesses.   It's a step to helping children accept and advocate for themselves as they grow up.   If you're thinking of the pediatrician I think you're thinking of, I think he'd do a brilliant job of explaining it, plus being able to answer any questions that come up right away.   Thinking of you.....

Thanks Diana I haven't read that one.  At this point there is no doubt that it will be beneficial for him to know his diagnosis.  It is really more about how to tell him and how he might react.  I am struggling with feeling guilty for waiting so long when I am sure he was ready years ago and just fearing the worst in his reaction to that. We will get though this and be able to move forward together, it just could be a bumpy road. Who wants to give their kids bad news.   I want to just get to it, but I also don't want to just dump it on him with little or no finess and make it harder for him to hear.  Dr. B would be amazing, and would be able to say it without my emotion or my husbands denial - so that is still an option.  So far I am not convinced that my husband is ready to be frank about it and answer his questions and I am not sure that I can keep it going in that direction on my own.    I am also afraid that I am not strong enough at this point to be the lead person in the discussion. I need my husband's emotional stability in this, but I am not confident that we are on the same page with this. Hmmn - well I will keep reading and will contact the Pediatrician for his advice on Monday when their office opens up.

Thanks for the thoughts.   - PS -prayer group is on for tonight if you can get out.

I'm just wondering Elby if it really will be "bad" news to him - he's been like this all his life & likely he already recognizes something's a bit different for him. 

Could it be that just talking with him about how it is & what it's named, how to go forward  ...  will empower him as others have suggested, in understanding himself a bit better?    

If you decide to chat with him yourself, you might want to even sit down & write some phrasing out for yourself ahead of time ... to make sure you're not inadvertantly planting the idea that this is a "bad" thing, by the language you use. 

Terrific idea to chat with the doctor about how to approach it - sounds like a wonderful resource for you!  Keep us posted.

Kudos Revjohn for your comprehensive & detailed response - as usual!  It is such a complexity indeed.

And my deepest respect to all of you who are parents of kids on the spectrum.  There are several ASD kids in my extended family (my husband has twin neices, both of whom have kids on the spectrum), and I've worked alongside a treatment programme for kids with autism & other disorders, so have crossed paths with many & their therapists. 

You have a point carolla - I think on some level he will be relieved to know, but I also think that it will be upsetting.  He wants to be like everyone else and I guess this is the reality that he is not.  However he will react we will be there with him and he will get past it.  Although he is prone to being devastated he tends to bounce back pretty good once he has gotten it out.  We have had conversations about his brain working differently making it necessary for him to work extra hard on things like focus and writing but being able to master technology.  We have also had the books I read about raising your autistic child etc out in the open - it is just that final step of actually naming it.

I think right now I just need to deal with my own anxieties and get them put aside before hand so I can be there with him. 

elby, my guess would be that you kid KNOWS that he is different already.  and, if his aspergers is similar to what my son has, he probably could care less anyways. 

my son has some issues with others when they don't 'conform' to his rigid standards of what should happen... for example, he INSISTS that everyone stand and sing 'oh canada' before starting a pick up hockey game at the park rink, and if they don't he just looses it.  because his school is so accomodating and accepting of kids like him, most kids at the park just know that my son has his little rituals, so they tell all the kids who don't go to school with him, and its no big deal.  so they all stand and sing, and then play hockey.   of course some kids laugh at him or even call him names, but really, he could care less. for him, its all about the hockey game. 

Hi Elby.

Odds are strong that your child already knows that he is different.

What he doesn't know is what is most scary.

Autism is not a death sentance.  Odds are it isn't even going to be life changing.  Your family has been changing to try and cope already which has lead to the diagnosis.

What knowing does is help you to cope.  When Autism is understood it is not so scary and certain public figures have been on the Autism Spectrum of Disorders.  They present as eccentric but not as terrifying.

The most horrific thing about Glen Gould was probably his posture at the piano.  When you can play as well as Glen could nobody cares about your posture.

There are effective strategies for children on the autism spectrum.  One of which is very simple.  More regimentation/predictability.  It is amazing how something so simple can make such a positive change for the whole family.

The only terrifying thing about knowing he has autism will be learning enough about it to explain it to everyone else because thanks to Jenny McCarthy and "The Rain Man" people are contentedly ignorant about the whole issue of autism.

G.I. Joe says knowing is half the battle.  Cheesy cartoon aside knowing doesn't set you back it does move you forward.

Grace and peace to you.

John

I agree Elby - sometimes kids do seem to want to "be like everyone else" ... but really, we are all different, in different ways.  Some are great at soccer, others can't run at all.  Some are terrific artists, others can't draw a stick man.  Some love math & find it delightfully easy, others (like me!) have trouble with simple arithmetic - my solution was to marry a mathematician!   So really ... differences are just that.  Like Revjohn aptly put it ... "it's not a death sentence".  Nor is it a reflection on the parents ... who also sometimes want their kids to be just like everybody else. 

You surely show a lot of insight Elby in thinking through all these things & I admire that.  I do think you're onto something about addressing your own anxieties first, so they don't flow out and onto your son when you chat about it. Kids really do pick up that stuff from us.   Who knows, after all this prep, he may just say, as mine often have ... "Oh mom ... I already know that!!" 

I like that Jenny McCarthy is being noisy about autism, but I too think she's misguided.  I don't believe you can be 'cured' from autism if that's what you truly have.  They can be taught to manage themselves better but autism is there for life.  I sometimes wonder if there are children with a different disorder that presents like autism but can be 'cured'.

My 7 year old son has autism; he has very little communication, some sensory issues, poor attention span but is a wonderful, joyful & affectionate boy.  We love having him and after alot of soul searching, we love him just the way he is.  Remove the autism and we would have a different child, he wouldn't be Jared any more.  We know he had it at birth (he's a twin so I had a baby to compare all the time)  and it will always be part of him.  How far he can develop, we don't know but have very high hopes.

On other interviews with Jenny McCarthy, I've seen her say she is not anti-vaccination, she is against the schedule.  It is getting out of control with the amount of vaccinations babies receive at such a young age. 

One other thing for other parents of children with autism, I've really enjoyed a book called 'Autism with Attitude' written by 2 moms (Gayle Noble & Kathy Almeida), not about how to do anything, just about how their attitude has affected their whole life in dealing with autism.  They're wonderfully positive people and it can be an inspirational read.

Glad to hear that some of the information about autism is getting out there to parents. I was on the other side for a bit...doing the research, or at least, working as an underling in a vast interconnected web of people who did the research.

I can't help being rather annoyed at Jenny McCarthy for manipulating people's hopes with all of her "passion."  Even though rigourous scientific research supported with statistical testing is the best evidence for anything, impassioned testimonials seem to win out almost every time (except among the people who understand research). So for each one of you parents on wondercafe, McCarthy is probably sending another one off on some wild goose chase diet plan, in the hopes of a "cure".

Last night on TV there was a fascinating show about a young man in London England who is on eo f only 100  Autistic Savants, he draws, mainly buildings.  It was interesting that he was non verbal as a child but came out of his shell with the introductin of drawing.

Stephen ???, well know artist.  The show looked back at his school and interviewed the head of the special school he went to.  At the end , this Principal mused on whether it was more amazing that he became this wonderful artist or if he learned to handle his life.  She felt the biggest accomplishment was learning to handle his life.  Really an interesting show.

hi everyone.  sorry i haven't been responding much to this thread, but i have been lurking daily and reading all the comments.  it is one subject that i am very interested in, but still have so much to learn, and sometimes the best way to learn is to shutup and listen.

for example, revjohn stated that autism is genetic.  i always thought it was environmental. 

i watched an interview last night that i will post and would love to hear everyone's feedback.

*after watching the clip* is it safe in assuming that autistic children are so unbelievably smart that they are misunderstood and thus their "outbursts" are caused by the frustration in being unable to communicate their genius.  that they look at the rest of society as a different "species" almost.

lastpointe stated that the boy she saw in the documentary found a way to communicate.  he didn't know how to express what was going on inside his head until he found his medium.  so did the man in the clip that i have posted.

j

http://www.cbc.ca/thehour/videos.html?id=999589223

not from what i've heard...  my pediatrician is pretty adament that its genetic.  i have a cousin with 8 kids, and only 1 is autistic.  my girlfriend has one with autism, one without, and a strong history of it in her family.  of my 3, only 1 has aspergers, and my daughter is bordering, i think...  i would say that i have an aunt with aspergers, and my husband has an aunt with it, as well as his sister.

nope. 

none of the autistic or aspergers kids or adults i know are geniuses. 

my sons outbursts happen when people do not conform to his very rigid standards, for example he blows a gasket if the guys playing street hockey with him don't stand and sing 'oh canada' before they start to play. 

my friends' kid blows when people try and stop him from doing whatever it is he has his mind set on doing... for example, if his parents don't let him play with the campfire.

sounds good.

I should clarify that the man i saw the documentary on was quite an exception.  there are only 100 autistic savnats in the world, wouldn't have any idea how many autistic people there are but there must be hundreds of thousands.

I do think that the issue of learning to communicate is so vital and tricky.  I was really glad to see the principal state that she thought the man's ability to live his life was more important that his artisitc skill.

There is some discussion of whether autism is just another reality, and that we just don't understand it. 

Some kids with autism who are mostly non-verbal do learn to communicate using the PECS system - Picture Exchange Communication System.  You can google it to find out more.  It takes some intensive training, but for some kids is very useful ... and does eliminate some of the frustration for them. 

they use PECS at my kids' elementary school, it works very well. 

Re: genetic versus environmental

I think the best way to state this is that autism has a genetic component and an environmental component. By environmental, I do NOT mean "bad parenting", but, as someone mentioned before, if you are going to try to feed your child a miracle diet to cure his autism and he has a problem with the textures, he's probably going to go ballistic on you.

The bottom line is that no problem is either genetic or environmental because you never have, and never will have, a person (phenotypic representation of genome) who exists without an environment. I guess we try to speak of the relative contributions of each, and I don't know a lot about autism, but probably a good deal is based on genetics so that you will never get autism if you don't have some underlying pre-existing genetic factor. How your autism manifests probably depends upon a lot of environmental variables.

Autism is quite complex, but failure to develop typical language is one of the most prominent symptoms, and leads to a lot of behaviour problems (uncommunicated needs/ obstacles = frustration). We discussed this in a class about autism and behavioural management, and a large part of the communication problem for children with autism MIGHT be:

1) Their sensory preceptual and processing systems are tuned differently than those of most typical humans, so that small errors, noises, smells, textures, etc. are extremely aversive to them

2) As part of this atypical processing of their surroundings, they find natural language and interaction more aversive and negative, whereas most infants and children find it very stimulating and rewarding to interact with other humans. Because communication is not so naturally, intrinsically, and obviously rewarding to infants and children with autism, they fail to develop language, typical eye contact, etc.

Note that I don't think that children with autism find ALL aspects of communication and interaction with others aversive, because different children with autism clearly find some types of interaction rewarding, like tickling games. One reason that developing language could be difficult might be that infants and children with autism have more trouble sorting out the relevant signals for commuication from the background environmental "noise" because of their atypical sensory processing abilities. Hence, overwhelmed by information, hence bad behaviour to try to turn off the environment? It might be a bit like listening to several poorly-tuned radios at once.

Hi momsfruitcake,

No.  That is a generalization that doesn't hold true.  In fact, it is more rarity than reality.

Depending upon where on the Autism Spectrum of Disorders an individual is placed also influences the possibility of finding a Savant.  Research shows that only 10% of all individuals placed on the Autism Spectrum of Disorders is in the Savant Range.

That isn't quite accurate.  The communication problem is not that the individuals did not know how to communicate.  They did not know how to communicate in a way that others could understand.

For communication to be effective is a two way street.  You have to put ideas forward and I have to receive those ideas.  If we both speak the same language communication is fairly straightforward.  If we don't speak the same language we have a problem.  You are putting ideas forward.  I have no idea how to interpret what I am receiving.

Assitive technology is able to do some translating for us.  Interestingly, the assistive technology is built by someone who more or less thinks like us for someone we always thought doesn't know how to communicate. 

Think about that for a moment.  I'm speaking Greek and you don't understand a word.  You give me a keyboard set up with English Font that speaks in English and I start typing away.  If you aren't hearing gobbledygook it is because I actually know how to type in English and form words and express ideas in English.

It becomes readily apparent that communication in your language is no obstacle to me.  You are the one at a disadvantage because you can't comprehend the language I use.

I've shared this link before.  It is of Amanda Baggs and it is called In My Language.  It is profound.

It outlines that the communication problem isn't what we tend to think it might be.  The first half of the clip is Amanda communicating to us in her own way.  The second half is her using assistive technology to help us comprehend what she means by her own language.

I don't appreciate books in quite the same way Ms Baggs does.  I have tried it though and I just don't speak the language.

And even though Ms. Baggs is quite non-verbal she has an ability to use words with remarkable clarity and precision.  She has been trying to communicate with the rest of us for a long time.  Assitive technology lets us hear what she has been trying to say.  It is as much for us as it is for her.

CNN has quite a bit of video with Ms. Baggs in it.

Grace and peace to you.

John

Sighsnootles wrote:

"our son knew right away, cause he was in the room when the pediatrician made the diagnosis.  the way he described it, my son felt gifted, not disabled."

You must have a very wonderful pediatrician; totally strengths based:)!

I sometimes think that more children than we realize have their own learning styles/ways of communicating that  doesn't fit with the 'norm' and that when they're not on the same page as other kids at daycare or school this is labelled 'disability'. That said, I don't know how I would cope if one or both of my two was diagnosed with Aspberger's or Autism or any of the others named in the posts above.

One thing is for sure: I'd probably be vulnerable to all sorts of alternative approaches--some very costly, that may or may not help, with hopes that it was within my power to find the 'cure'. I've heard parents blame vaccination for their children's autism based on their observations that the signs appeared after the MMR. It breaks my heart when I hear this because it seems they need something to pin it on, as if they might have prevented it if only.....I think the idea that there are some things that happen to our kids that we are unable to prevent or control is so much more scary.

 we do... his name is dr. burgh, and he's actually written a book for parents with kids who have ADHD and ADD... his practice is limited to kids with learning problems only, so he is very knowledgable.  his ability to talk to the kids with a very one on one approach is what really drew me to him in the first place.  whenever we saw him, my son was always a valuable part of the care team, and he never talked over his head like other physicians i've worked with.

BINGO.  that, in a nutshell, is exactly why you have people like whats-her-face there at the beginning of this thread yapping about the MMR being like liquid autism, and all these parents flocking to her and chanting 'yeah!'  whenever she makes a public appearance.

Just thought I would check in - we had the dreaded talk with our son and as I had hoped we were far more concerned than we needed to be.  We asked him if he knew what autism was and talked about his brain processing things diffrently.  He asked if he was retarded and we told him that he was not, he just had different strengths and weeknesses using the fact that he can get the answer to a math question in his head but can't for the life of him figure out the steps the teachers want him to write down or write 3 sentences without drifting off into his own head.   He decided autism means he is a math genious - which he is not but he has decided to go with that anyway.   He still does not want help from an EA at school and we are discussing ways he can get the help he needs next year without being singled out. 

awesome news, elby...  thanks for letting us know how it went!!  sounds like you did very well.

well, it's been a while since there has been action on this thread, but with the new research i thought it would be appropriate to post my appreciation (and prayers) for the sciene behind the step which is bringing them closer to solving this mystery.

i just went through and reread the thread again and really appreciate all the comments and how much i learnt since its original posting.  maybe ms. mccarthy can focus her time, money and passion toward this latest research, which officially debunks the vaccine-autism link.

Our youngest son (almost 4) was recently diagnoised with ASD, on the low end of the spectrum. It's definitley thrown us for a loop. We're finding so many mixed opinions about autism, and even among various professionals -- drs., teachers, therapists, etc. about whether our son actually has ASD or just a speech learning disability. His teachers all think he is unusally bright and the smartest kid in the class. His grandparents don't know how to react I think, so they have pretty much withdrawn from him completely. It's all very confusing and even depressing. Then, on top of that all, we're finding that there really aren't very many resources available for a kid like him, even here in Toronto. We don't know what to do except to hang in there with our kid, and relate to him as he is, just as we did before the diagnoisis. We really don't know what to think, but it's a big strain on us.

Hi Xango - it's always a tough time when a child receives a diagnosis - of almost anything.  Lots of learning to do and lots of adjusting for everyone.  It can be really confusing as you mention.   Not sure what services you're looking for, but in Toronto the Geneva Centre is a great spot to start.    Hugs to you and your family as you incorporate this news into your way of being.  

http://www.autism.net/

I believe that's the link to the Geneva Centre that Carolla mentioned.

 Hi Gang,

Something of an update.

Our son, mentioned above as having been diagnosed on the Autism Spectrum of Disorders with Pervasive Development Disorder--Not Otherwise Specified, is graduating from High School tonight.

He was named to the Honour Roll.

Which is not something we thought we would ever see given how he struggled as he did.  Getting him into a technical skills school (which he resisted) eventually paid off and he was able to see that he may not have a head for history or math but neither history or math are known for their cooking or baking either.

Grace and peace to you.

John

 Hi  xango,

I am sorry that you and your family are struggling with a diagnosis.

I think with many conditions, the diagnosis itself is a very big psychological hurdle to get over.

I would suggest that you tell the grandparents and others that in fact your son is exactly the same child he was prediagnosis.  He is the same fun loving, curious, loving, smiling child as always.

He jsut has a name for his behaviour now which may help you access special help if you need it.

He is still just your son, the diagnosis is not him , 

Congrats RevJohn family!  This is a great occasion to celebrate - it's an accomplishment by the teen, and by the whole family who stood with him, whether he wanted it or not at any given moment.   Enjoy savouring that picture of him walking proudly across the stage tonight.

congrats, revjohn!!!

friends of mine have two autistic girls, and the oldest graduated with honours last year and is currently at queens university on a full scholarship in the honours program.

i hope that i can do as well as you and her at parenting my son...

I am concerned about some of the comments implying that you can "overcome" or rise above your autism.

There is no cure. Also, while one young person may have "mild" Aspergers, another with Aspergers my live a very solitary life. To say that Aspergers or PDD-NOS is mild can be very misleading. It varies with the individual. People with Aspergers stay married or even get married 1/4 the rate of the regular population. Only 25% of us can keep a job, in spite of the fact that by definition an Asperger's person must have as a minimum average intelligence, and many of us pass our more successful collegues in IQ by 50 points or more.

What has amazed me since I was diagnosed this year at the age of 60, is the stirrings of the Autistic community, where people are starting to demand a) that autistics have a say in what responses to our needs should be, and b) that we need more emphasis on teaching neurotypicals that we have as much right to be autistic with autistic behaviour as neurotypicals have to be predictable and somewhat boring. :).

I try not to be too obvious, but if someone has a problem with my stimming (I rock), that is their problem, not mine. I would probably, with as much humour as possible, although we are not known for our humour, to explain  why I am different. Most people, especially the younger adults, are quite interested.

Bob Weight

Hello Northern Gadfly and Welcome to the WonderCafe.ca.

Thank you for sharing a part of your story and experience.

Grace and peace to you.

John

Jenny is one of those people that can't accept that Autism is genetic because it leads her to feel guilty and/or less than "perfect".  The MMR vaccine gives her something to place blame on.  My three boys were all diagnosed with ADHD and that led to my diagnosis and yes I feel guilty sometimes because it makes for more challenges but we are all Gods children.  I'm so tired of disorders that impact behaviour being viewed differently than say Diabetes.

I agree with your concerns that one can overcome autism.   

I believe Autism is just another variance in humanity. Much as being gay is just another variance that does not need to be over come.

Like many LGBT people are harmed by homophobia  and suffer abuse by others and self abuse caused by trying to be straight, so too I believe that people who have Autism  are harmed by others who try and make us be "normal". JUst as gay people used to have their mental illness blamed on their homosexual behaviour, instead of on homophobia, many people with Autism may have symptoms, that are blamed on Autism, rather than on Atusimphobia.

The idea that normal exists is something that has been promoted by many including science. This causes problems in partuclar for those of us who also suffer other illnesses. People living with Autism can also have other illnesses. yet when developing treatments for other illnesses People with Autism are excluded from clinical trials.

Meanwhile we are than given these treatements once approved, and either they fail to work, or they have side efects that are different.

Also we over look the positive side to having Autism, and fail to promote, develope, or learn form those.

For example, having Autism, gave me the ability to be a surperior bricklayer. Having some kinds of Autism is also asscoiated with immune or autoimmune differences. Which is seen as a problem. Yet it is my believe that it also plays a role, in overcoming cerain illness that can infirm or kill others. That has been my experience as a person living with Autism and AIDS. I have had many oportunistic infections, that always kills others. Sometimes my body even through it supposed did not have an ability to fight these infections, is either able to fight them off, or able to live with them.

Personnaly that is my pet peev as of late, my doctors refused to believe that certain symptoms are  caused by certain infections, becasue they beleiv it was not possible to stay alive with those types of infections..

So I am denied treatment. latley I have had to travel outside Ottawa for the diagnoises and treatment of a fungal infection that is suppose to kill evryone that has it, Yet somehow my body live with it, but still suffering from many effects that caused me to be infirmed and in pain.  

It tuned out I had a so called deadly infections that was not only causing me pain in my legs,(a fungus had infected my bones) , but that was also so responsible for mild encephalitis.(the same fungus was also in the fluid surronding my brain)   Now that I am on a antifungal treatment, not only is the pain going away, but psychiatric symptoms, coordination symptoms and others are going away.

It makes me wonder if some of the psychiatric symptoms that others with Autism suffer from, do not also have a bases in their different immune system, and infections.

http://news.ca.msn.com/local/edmonton/missing-autistic-teen-found-dead