Learning to Embrace Autism

As another Autism Awareness Month begins, those of us who are parents of autistic children are wondering just how much more awareness the world needs. For more than 10 years, the debates have raged on Oprah and Dr. Oz, in books by Jenny McCarthy on one side and mainstream doctors on the other, in every major newspaper and magazine: What exactly is autism? Why is the rate increasing? What causes it? After all of the drama and tears, the charges and counter-charges, it's impossible to believe that there are people unaware of autism.

But what should we do about it? Ah, well, that's another question.

For three years after my son was diagnosed with autism in 2007, I directed Loving Lampposts: Living Autistic, a documentary that looks at how the world views autism today, when the condition is having its cultural moment. I spoke with autism experts like Simon Baron-Cohen, autistic adults like Stephen Shore, doctors like Kenneth Bock, who use unconventional methods to treat autism, and a wide variety of parents who respond to autism every day.

My conclusions may surprise you, especially if you've grown used to hearing autism described as a soul-stealing prison that plunges families into unending misery:

1. Autism is not always, inevitably, or only a tragedy.
2. There are autistic adults who lead meaningful lives both because of and despite their autism -- and it's not that hard to find them.
3. Talking about vaccines is not the same thing as talking about autism.

I'd love to talk about points one and two because they are really what my movie is about. But I've used the word -- vaccines -- that can derail any discussion of autism, and I think I'd better address that first.

I've met parents who believe that vaccines caused their children's autism, and I don't doubt their sincerity. But the evidence against them is mounting. Dr. Andrew Wakefield's research into the MMR vaccine has been revealed to be fraudulent. Thimerosal, the mercury-based preservative that was in many childhood vaccinations, is largely gone from them and yet autism rates continue to rise. But with each piece of evidence, the goalposts move and there is a new theory of causation.

David Kirby, who kindly allowed me to film a speech he gave at NYU and who appears briefly in my film, made this point nicely in a recent article on The Huffington Post. Kirby suggests that belief in a vaccine-autism link is going up, not down, and he writes, "There is nothing that anyone can do or say -- not you, not me, not any scientist on earth -- until definitive proof of all the true causes of autism is found."

If Kirby is right here, then it's a sad day for science and public policy in this country. It seems obvious that we should be able to say what does not cause a condition even if we can't say what does cause it. Think about it: What if I told you that eating green apples causes autism? Can you tell me I'm wrong? Really? You don't know the true cause of every case of autism, do you?

Jenny McCarthy, who also appears in my film, wrote recently about Andrew Wakefield: "Dr. Wakefield did something I wish all doctors would do: he listened to parents and reported what they said." But most doctors have done this. The extensive and expensive research into a vaccine-autism link wouldn't have been done if parents hadn't raised so many concerns about vaccinations. The medical community heard those parents. McCarthy is not upset because there is no research, but rather because the research hasn't verified her own beliefs.

But there I go proving point three. In all my talk about vaccines, I haven't mentioned anything about the amazing autistic adults I've met, about the parents of autistic kids whose compassion and acceptance are reshaping the world for their children, or about a different way of looking at autism that better supports autistic people.

It's called neurodiversity and at its core is the belief that autism is both a disability and a difference. It suggests that we should help autistic people manage or change the behaviors that are truly harmful to them even as we recognize that doing so doesn't make them any less autistic. And it implies that the rise in autism diagnoses may not actually be a catastrophe, but is, at least partially, good news because it means that more people are getting the services they need.

Over the next three weeks, I'll share some of what I learned about neurodiversity and autism as I made Loving Lampposts. And I'll introduce some fascinating people.

We've got autism awareness, and it hasn't taken us that far. Let's see what acceptance can do.

 

 

 

Follow Todd Drezner on Twitter: www.twitter.com/lovinglampposts

Comments

[TheWM]

01:17 PM on 04/30/2011

Hello, Mr Drezner! You assert, as so many others have done, that the rate of autism is rapidly increasing. I wonder whether this is actually true, or whether what is rapidly changing is the rate of diagnosis, as awareness of autism spreads.

My sister died in 1979, if she'd lived she would be 51 years old now. In retrospect it seems clear that she was profoundly autistic, but that diagnosis was never applied to her when she was alive. I'm 49, I was first diagnosed with an autistic-spectrum condition a few years ago. I suspect that most autistics my age or older are not diagnosed as autistic.

Thank you very much for saying this:

"Autism is not always, inevitably, or only a tragedy."

Clearly, for many autistics, the condition -- notice how I carefully avoid the term "disorder" -- include unusual abilities as well as unusual difficulties. What if Einstein and James Joyce and Wittgenstein and some other famous eccentric geniuses have been geniuses because there were autistic? Over and over I plead with people to at least consider things like that. It feels sometimes like I'm trying to stop a freight train with my bare hands, but I keep trying.

[LaurieAnn]

02:05 PM on 04/05/2011

All that you have to say Mr. Dezner is true.  AND there is also another side.

My husband and I who are raising a child with autism:

* have seen that child rejected by our extended family
* have been worn down by a local school system that cannot meet his needs
* have seen our economic security go out the window as we pay for therapies for our son
* are very, very concerned about what will happen to our son once we are gone.  We have no family 
who is willing to act as guardian for our child
*have had to say goodbye to our dreams for our future because our son will be with us for the rest of our lives as he is not one of the higher functioning children.

So while I applaud your positive view of autism and people with the condition, some of us face a flip side that no amount of radical acceptance can change.  Indeed the radical acceptance sometimes leads to a greater awareness of the real issues faced by the family and the individual.  That does not mean that growth is not occurring for all; but reality and acceptance is still often very, very painful.

Another good book you many enjoy (and of course you may already be familiar with it) is Making Peace with Autism by Sharon Senator.

[lizditz]

12:59 AM on 04/07/2011

Dear LaurieAnn,

If my extended family had rejected my child, I would be grief-stricken, and angry. I imagine you may feel the same way.

But, as an autism advocate, I would say that "radical acceptance" -- society embracing and supporting families, some of whose members may never be independent -- holds the greatest promise for children like yours as they grow to adulthood. Only through "radical acceptance" will there be dignified employment opportunities, safe and wholesome housing (possibly in neighborhood-based group homes), and lifetime care that both honors the individual's autonomy, and recognizes and meets the individual's need for supportive care.

These are the goals that parents and caregivers of people intensely affected by autism have.

[Disclosure: I am a founding member of The Thinking Person's Guide to Autism. We started as a blog and a book project. The majority of the founders have children who are intensely affected by their autism.]

[LaurieAnn]

01:39 AM on 04/07/2011

Thank you for the very kind and thoughtful reply.  I will certainly check out your blog and book project.  Just this evening my husband and I were discussing how we can prepare and provide safety and care for our son when we are no longer living.  Since it is just the three of us (we have no other children) we are going to have to find someone to act as conservator and trustee for him.  Perhaps I can dialog with you on this issue on your blog.  

BTW, I am in the process of trying to set up a supported housing group in my community.  We are just in the beginning phases and it is a long term project, however this is how I would like to my my community more autism-friendly.  That's my ultimate goal.

[vincealy]

08:04 PM on 04/04/2011

Another study links vaccines and autism http://www.cbsnews.com/8301-31727_162-20049118-10391695.html "March 31, 2011 11:32 AM
"Vaccines and autism: a new scientific review" ....... "The article in the Journal of Immunotoxicology is entitled "Theoretical aspects of autism: Causes--A review." The author is Helen Ratajczak, surprisingly herself a former senior scientist at a pharmaceutical firm. Ratajczak did what nobody else apparently has bothered to do: she reviewed the body of published science since autism was first described in 1943. Not just one theory suggested by research such as the role of MMR shots, or the mercury preservative thimerosal; but all of them. ......

[Marsha McClelland]

09:34 PM on 04/04/2011

Thanks, Vincealy. Great article. I am commenting there under Mofmars333 & placed a lot of incriminating proof concerning those responsible for bringing us lies of deception & working to continue the vaccine cover up. Truth's out! Harmful drugs, vaccines & many other toxins harming our children will soon be a thing of the past.

[lizditz]

01:38 AM on 04/07/2011

Dear vincealy,

You refer to http://www.ncbi.nlm.nih.gov/pubmed/21299355 (Ratajczak 's literature review) which was discussed 2/11/11 at LeftBrain/RightBrain (http://bit.ly/f7l5bI). The problems with the review, in terms of citing debunked papers (anything with either Geier as author, for example), and credulous, blue-sky speculation are overwhelming.

You then go on to cite Sharyl Attkisson's embarrassing, error-filled piece at CBSNews. The problems with both Ratajczak's review and Attkisson's shoddy "reporting" were discussed at length at Science-Based Medicine: http://www.sciencebasedmedicine.org/?p=11899 by a senior scientist whose work includes gene therapy (in other words, far more trained than Attkisson to understand the holes in Ratajczak's speculations).

There is no reason to believe that vaccines (in any form or in any combination) cause autism. On the other hand, the evidence for vaccines preventing human suffering and death is overwhelming.

Does that mean that all vaccines are 100% effective? No, of course not. Does that mean that there are never any adverse effects from vaccines? No, of course not. It just means that vaccines are safer than the disease they protect against.

[neutralground]

04:03 PM on 04/25/2011

Left-brain Right/Brain? Science-Based Medicine? Says it all right there.

[Heather XW]

04:23 PM on 04/25/2011

US Government websites and statements for your review:

Vaccine Injury Table

http://www.hrsa.gov/vaccinecompensation/table.htm

“We have compensated cases in which children exhibited an encephalopathy, or general brain disease. Encephalopathy may be accompanied by a medical progression of an array of symptoms including autistic behavior, autism, or seizures.”

http://www.cbsnews.com/8301-31727_162-20016356-10391695.html

Since there isn't *any* comprehensive safety data regarding vaccines it is impossible to make the statement, "It just means that vaccines are safer than the disease they protect against." You are guessing here, not very scientific........

[Marsha McClelland]

03:59 PM on 04/04/2011

Something has happened to the links I posted below that prove the facts & deception against Andrew Wakefield in counter to the false claims of another commenter in this conversation below. So here are fresh links that do work.

"Documents emerge proving Dr Andrew Wakefield innocent; BMJ and Brian Deer caught misreprese­­nting­­ the facts"

http://nearing.newsvine.com/_news/2011/01/27/5935264-documents-emerge-proving-dr-andrew-wakefield-innocent-bmj-and-brian-deer-caught-misrepresenting-the-facts

"Dr Wakefield demands retraction from BMJ after documents prove innocence from allegation­­­­s of vaccine autism data fraud"

http://www.sott.net/articles/show/222197-Dr-Wakefield-demands-retraction-from-BMJ-after-documents-prove-innocence-from-allegations-of-vaccine-autism-data-fraud

"Wakefield Gives Proof: No Fraud. Brian Deer Lied"

http://www.gaia-health.com/articles351/000394-wakefield-proof-no-fraud.shtml

[Marsha McClelland]

03:48 PM on 04/04/2011

Last but not least:

"Wakefield Gives Proof: No Fraud. Brian Deer Lied"

http://www­.gaia-heal­th.com/art­icles351/0­00394-wake­field-proo­f-no-fraud­.shtml

[Marsha McClelland]

03:47 PM on 04/04/2011

As promised to the one who brought Andrew Wakefield into this conversation by claiming in a comment, below, that his work was a fruad, here are the facts. Listen to this in depth round table investigat­­ion on Jan. 27th as the cover up is exposed beyond a shadow of a doubt;

http://www.progressiveradionetwork.com/the-gary-null-show-wnye/

Hear Brian Deer's interview on Jan. 25th where he reveals, clearly, what's really what. He hangs himself with his own words, dodging questions & changing the subject as anyone can see, in his obvious ploy to try to pull off the "Elaborate Fraud" he represents­­­ but accuses Dr. Wakefield of.

"Documents emerge proving Dr Andrew Wakefield innocent; BMJ and Brian Deer caught misreprese­nting­­ the facts"

http://www­.dailypaul­.com/15529­6/document­s-emerge-p­roving-dr-­andew-wake­field-inno­cent-bmj-a­nd-brian-d­eer-caught­-misrepres­enting-the­-facts

"Dr Wakefield demands retraction from BMJ after documents prove innocence from allegation­­­s of vaccine autism data fraud

http://www­.global-in­formation-­network-so­ciety.com/­dr-wakefie­ld-demands­-retractio­n-from-bmj­-after-doc­uments-pro­ve-innocen­ce-from-al­legations-­of-vaccine­-autism-da­ta-fraud.h­tml

To be continued:

[Marsha McClelland]

04:46 PM on 04/04/2011

The "To be continued" part to this post from gaia-hea­l­th.com is just above this one. That link & two others here don't work so I top posted good links that do. They are taking a while to post so I just wanted to add that when you get dead links like this just take the subject title, without the quotation marks & past it into Google. Usually many links to the same article will appear.

[Marsha McClelland]

02:57 PM on 04/04/2011

"WE are slowly but surely destroying the intelligence of our future generations with vaccination."
Dr med Gerhard Buchwald, Germany

You'll find many more wise voices at the following link, including the words of Dr Jonas Salk & Dr Sabin. Salk & Sabin were both developers of the Polio vaccine & have since come out in truth.

The truth about vaccines has all been recorded in the archives of history for posterity to learn from.

"DOCTORS AND SCIENTISTS CONDEMN VACCINATIO­N"

http://www­.vaclib.or­g/sites/de­bate/index­.html

Doctors & scientists from the past as well as present have been trying to tell us the truth about vaccines for a very long time but have been ignored a stifled until now.

[Taximom5]

12:24 PM on 04/04/2011

Who is this author kidding?

The "extensive research" that has been done on the link between vaccines and autism has been limited to ONE vaccine (the MMR) and ONE ingredient (thimerosal). Wow, out of 36+ vaccines by the age of two, and this is "extensive?"

Thimerosal is still in 90% of the flu shots, which are being routinely given to infants as young as 6 months AND pregnant women, despite the fact that thimerosal crosses the placenta.

Saying that "green apples don't cause autism" is blowing a smokescreen. There IS scientific evidence that vaccines are causally linked with autism. Look at Hannah Poling, and then look at the latest research showing a huge percentage of autistic kids with mitochondrial disorders, which we now KNOW can predispose a child to problems with vaccines, problems that become--autism.

This is not green apples. We have not seen conclusive evidence that vaccines aren't linked with autism. We've only seen deeply flawed, twisted studies funded by, directed by, interpreted by, and heavily marketed by those who profit from the sale of the vaccines.

[Marsha McClelland]

01:06 PM on 04/04/2011

Amen!

[Sonic hedgehog]

03:48 PM on 04/04/2011

I'd very much like to see this "scientific evidence that vaccines are causally linked with autism".

[Marsha McClelland]

04:03 PM on 04/04/2011

It's all here in this thread. All the proof anyone would need. It's up to you to put it all together & do the research. We can give you the facts & material but you have to investigate it all yourself. It's all math, common sense & logic. The science is all there & the cover up obvious to those who want to see the truth.

[Taximom5]

05:17 PM on 04/04/2011

Here's one, just for starters:
http://www.ncbi.nlm.nih.gov/pubmed/21058170
Hepatitis B vaccine: boys vaccinated as neonates had threefold greater odds for autism diagnosis compared to boys never vaccinated or vaccinated after the first month of life.

And that's with lumping together "never-vaccinated" boys with boys who were "vaccinated after the first month of life."

[Garbosmed]

06:14 PM on 04/02/2011

There's a big difference between fighting for acceptance of children and adults who already have autism -- a worthy and necessry battle -- and fighting for acceptance of an autism prevalence rate that has jumped from 1 in 10,000 to 1 in 110 and continues to grow. Something is very rotten in Denmark. Children and adults with ASDs should be treated, supported, and accepted for who they are. They should be allowed to participate in society as fully as they are able. However, an alarm should be ringing in everyone's heads -- this is an epidemic, this is not "normal", this is not the way things have always been and we should stop pretending that it is. It's understandable that those in the neurodiversity movement want to emphasize normalizing autism, but in doing so they jeopardize the future generations behind them. What's needed is acceptance of autistic individuals, not acceptance of autism. 1 in 110, the numbers are growing each year and despite more than ten years of "research" into "genetics" nobody can explain why. It is UNacceptable.

[justAswimmom]

10:59 PM on 04/03/2011

Well said. F&F

[Gigi C]

01:15 AM on 04/02/2011

Calling autism neurodiversity doesn't make it go away. It also prevents parents from looking for possible causes. In addition the last word about vaccines has not been spoken. The way it is right now vaccines are allowed to have the lofty status of being the only pharmaceutical that can be produced without much supervision. Vaccine manufacturers are not likely to improve the production of vaccines when they are thought to be forever "safe." No, we don't know for sure what exactly causes autism. But as long as we don't know, vaccines are more suspect than the apple you mention unless the apple had been injected with a poisonous substance. There are toxins in vaccines. That is a fact. That makes them more suspect. That fact goes whether the reaction is autism or something else.

[schatsie]

09:09 PM on 04/01/2011

When two pregnant physicians could not find flu vaccines without thiomersal, I have to believe you are mistaken....when children are receiving 4 times the number of vaccines that were given in the 1970s, don't you think there could be a problem?

[Supersteel]

10:00 AM on 04/04/2011

Then find a study that shows it is a problem. Prove it.

[Marsha McClelland]

11:16 AM on 04/04/2011

The proof vaccines are toxic & dangerous is in all the many damaged children as studies would show if they weren't done by the foxes guarding the hen house. Lunacy has reigned for far too long. The trade off for having childhood disease, that most always strengthened immune systems was replaced by epidemics on a scale that's so massive it, now, takes 1 in 3 in cancer before age of 65 & 1 in 100 children in neurological disorders called autism. 1 in 70 boys as the are more susceptible.

Doctors have been trained to blame media, saying there has been no increase. They say cancer & autism have always been prominent but we never noticed until media began reporting it. They also blame the rise in autism on better diagnosis but if that was so, we would have noticed these victims all around us, if they had actually been there all along.

We know this is a lie because we can see with our own eyes how widespread both cancer & autism have become.

We never saw such epidemics years back & the rise has been right in step with the increase in vaccinations through the years. Other toxins are to blame as well as harmful drugs but vaccines are definitely the catalyst.

We are a nation of epidemics that's rippled out to the world because of ignorance & greed.

It is unbelievable yet undeniable if properly investigated.

[John Best]

08:08 PM on 04/01/2011

Here's the whole truth about how Neurodiversity came to exist and how they plotted their brainwashing of brain damaged kids witth Asperger's. http://hatingautism.blogspot.com/2009/06/debunking-neurodiversity-and-ari-neeman.html

[schatsie]

09:10 PM on 04/01/2011

this is way too weird for me...

[AutismNewsBeat]

10:21 PM on 04/06/2011

Mr. Best is running for President!

[librainstars]

10:02 AM on 04/01/2011

My son has PDD, He is also LD. Reading and writing is very hard for him. Hes 20 now.
When he was young. There was no speech...we were blessed that in time it came.
Life is still hard for him. Somedays worse than others and ppl living with this understand.
"The good day bad day theroy"
I blamed vaccines in the beginning. Due to I had rh neg blood and had to have shots after my daughter and while pregnet with my son. Plus of course his vaccines.With that being said . I still would make sure hes vaccinated. Do i think mercury should be in the shots no.
I also to some extent blame where I grew up. I do think pollution, and things like that come into play.
I will say this with all the awareness going on. Its still something ppl dont really get.
When my son was young the local paper did a story on him. "Autism is not just the rain man"
The reporter who did the story did it because he had ADHD. He understood.
I still remember how ppl reacted to it. So many ppl saying they were sorry.
I kept saying dont say your sorry. I would not trade him for anything.
If i could I would have waved a magic wand to make the PDD go away. So his lif was easyer. But you cant.
I love him with all my heart. Hes a gift.

[momstudent]

10:50 PM on 03/31/2011

Bravo!!! My son has Autism with a Cognitive Disability and Adolescent onset Seizure disorder and I am trained and work in Disability and Mental Health over six years. My belief is DISABILITY IS NATURAL. No blame is needed, research yes. Support and direct services are more productive. Life planning and advocate training are far more essential for all children. In a college class a young man with high functioning ASD stated his mother told him he was damaged and injured by vaccines. My heart broke.This young man had been brainwashed by his mother he was broken, injured and damaged. PLEASE let's keep the conversation going, in the end it is about our children, helping them become the very best they can be regardless if they have Austism or not..

[laaambchop]

01:25 AM on 04/01/2011

F&F

[Marsha McClelland]

11:32 AM on 04/04/2011

Please do the proper research.

"Epilepsy is a global epidemic"

http://www.modernghana.com/news2/231579/1/epilepsy-is-a-global-epidemic-epileptic-expert.html

And they have known vaccines have caused epilepsy for years>>>

http://vactruth.com/2010/05/09/vaccines-cause-epilepsy/

[CriticalDune]

09:05 PM on 03/31/2011

My intention is to demonstrate that, while the focus on acceptance for the high functioning Asperger's community is all well and good (I'm a long time supporter by the way) and all parents accept their kids whatever the diagnosis, it is likely a function of many Aspie advocates own disability that leads to the conundrum. Many in the ND community are simply unable to reconcile the need for research for cures and therapies for those who are not similarly affected.. It is a complex and nuanced issue that is not helped by breezy black and white posts like yours.

[John Best]

08:11 PM on 04/01/2011

I'd like to add to that challenge. Nobody from ND will dare to face me in any forum where they can't delete my remarks. Any takers?