HBO and Autism: Perfect Together

A lot of adults (myself among them) are arguing very vocally right now over the scope, cause, and impact of autism in America. Acrid debates over mercury, vaccines, special diets, alternative therapies and conceded court cases are flooding the media almost daily.

It's enough to give autism a bad name.

Then, along comes an honest little documentary like Autism: The Musical. This all-too-real movie lifts the heart up and then slams it right back down on the pavement -- and we love every minute of it.

This simply shot, beautifully conveyed portrait of life with autism premieres tonight on HBO (and will stream for free for one week at hbo.com). It serves to remind us all that, no matter what "causes autism," no matter what, if anything might "cure" it, children affected by the disorder deserve all of the honor, love and patience that we, a nation consumed by our own attention deficits, can muster.

This moving and funny film opens with the jarring data that autism in America has spiked from 1-in-10,000 kids in 1980 to 1-in-150 today.

But instead of dwelling on the cause of autism, the film focuses mostly on five wonderful kids -- two boys with very high functioning autism who are brilliant, charming, and yes, "quirky;" a teenage girl who sings (and looks) like an angel; a little boy who rarely speaks, but who can express himself vividly through his cello; and one Russian adopted boy who is completely nonverbal (until he gets a computer) and who will break your heart when you see him.

Anyway, they put on a show, and it is riveting, joyous and tearful. But the real message here is that kids with autism are human beings, just like everyone else on God's green earth -- with their own hopes and fears, intellects and personalities.

They deserve more than our compassion, our love and our dollars. They deserve our respect.

Meanwhile, Autism: The Musical unflinchingly shows just how stressful the disorder can be on families. The weight on couples is obvious: One marriage suffers through infidelity, another ends in painful divorce.

Some people might complain that the potential causes and treatments of autism are only touched upon here -- though we do see clear evidence of heart-wrenching autistic "regression," and there is some talk about vaccines, environmental toxins and "damaged kids."

Others might worry that the portraits of the two high functioning boys -- so bright and charismatic you want to hang out with them for hours (though their peers shun them into a lonely world of their own) -- will leave the mistaken impression that most children with autism are like this. If they were, then the epidemic might be slightly less painful to bear.

Sadly, however, most kids with autism are more than just a little "quirky." And as much as we truly adore all the children in this film, few, if any parents of "typical" kids could honestly say, "I wish my child were like that."

Autism: The Musical, then, gives us the whole unvarnished "spectrum" of autism spectrum disorder. Little Neal, the adopted boy who can neither speak nor hold a gaze, tells us what we should know: These extraordinary children (and many adults with autism, too) need and deserve our attention, and help.

Here, I hope, is a movie that everyone can watch and appreciate. From those of us who think that many autism cases were triggered by environmental toxins; to the "neuro-diversity" people, some of whom think that autism is a natural, inborn variation of human brain wiring, and should be celebrated, not treated; to the CDC, who wishes we would ALL just go away.

Please watch this film: You will be treated to an achingly accurate portrait of what autism is, isn't, and can be.

David Kirby is author of "Evidence of Harm, Mercury in Vaccines and The Autism Epidemic - A Medical Controversy"

 

 

 

Comments

[trishwhite]

03:55 PM on 03/27/2008

Thank you, David Kirby for another excellent contributi­on to the Autism Community and to HBO for your committmen­t to outstandin­g programing­.

I would like to mention a great man, who most of you know of in the Autism world, Dr. Bernard Rimland founder of DAN (Defeat Autisim Now). Dr. Rimland spent his career and life helping parents, Doctors, researcher­s and children. He lived a selfless life and brought Autisim out of the dark ages.
Trish White

[beejcctx]

07:38 AM on 03/27/2008

(cont. from above)
What is even worse is that we as a country treat disabled folks the worse of many industrial­ized nations - some states have institutio­ns, some states have group homes - many places have unlicensed places all over the place. The hardest thing at the end of the day for a parent/sib­ling of a child with autism is "who will take care of them when I can't?"

This is a CRISIS that must be addressed on four levels: DIAGNOSIS - so we can find a source to stop this disorder and potentiall­y cure autism; EDUCATION - Strategies­/Intervent­ions to teach families how to aid their children and give their families support; FINANCIAL SUPPORT - for the child so their families can find the programs they need to aid them; PERMANENCE­: Life-Long Residentia­l Programs that support families whether they have their child at home or in other residences­. We have to get this NOW - sadly our government is not leading the charge and they are letting down generation­s of children and if they thought Social Security was in a crisis, wait til Medicare and Medicaid is paying for millions of young adults who have to be cared for 24/7!

[CraigWilloughby]

10:51 AM on 03/27/2008

beejcctx, I have to comment on your posting. You could not be more correct. Our current government­, nay, our government for the past 50 years, have little cincern for the mentally handicap. The government doesn't see them as productive members of society, so why should they care? For those of you who don't believe me, look at the state of some of the low-income mental facilities and tell me that the government cares for these people.

The sad part about the autism side of it is that so many parents can't trust our medical establishm­ents. I've been told numerous times to intitution­alize my 6 year old son. The government wants to lock them away and forget about them, and I refuse to accept that. Many parents feel that it was through the fault of the medical community that their child developed their condition (there are those out there that will argue that fact, but it is true; many of us feel that the medical community is responsibl­e for autism), so how can we trust the medical community to care for our children?

To find a cure, we must first find a cause. Finding a cause will promote prevention­.

[beejcctx]

06:47 AM on 03/28/2008

Craig,
Exactly! I work in the "biz" at a state institutio­n (been there 20 years) on the theory of how I can affect change from within. Our government isn't caring or watching the institutio­ns or the private group homes worth a poop!!!

There is no infrastruc­ture on where these people will leave and who will help them every waking hour. Group homes are not always the answer since they may not have 24/7 staff or onsite medical like my facility. A NATIONAL COALITION needs to figure out what we should do - not just those crazy people at Advocacy, Inc. who just want everyone out of institutio­ns, but do not make certain there are services out there. My facility serves the folks NO PRIVATE GROUP HOMES WANT (since they cannot profit from them): Behavioral­ly challenged and medically fragile.

We must find the CAUSE - prevent more families from being affected. REALIZE this is changing our SPECIES!!! It is an epidemic and I always prayed they would have figured autism out by now. Instead it has morphed into more disorders: Aspergers, potential mitochondr­ial disease... something is altering these people at the DNA level.

[beejcctx]

06:54 AM on 03/28/2008

Criag,

And the other thing that is significan­t is to realize HOW MUCH the current administra­tion has CUT funding on ALL LEVELS for people with disabiliti­es. I'm in Texas (and remember Bush is NOT our fault!) but when he was Governor he got his "activist judges" to end a federal lawsuit that had been causing Texas to have to properly fund and staff the Mental Health/Men­tal Retardatio­n systems.

Then when he got to be Prez, he CUT MEDICARE and MEDICAID benefits - ok, we know who is supposed to get that stuff - DISABLED PEOPLE!!!! Talk about cutting budgets to the bone. States barely fund the places they have, they depend on the FEDERAL dollars to make the places work - so no bucks, no Buck Rogers.

Our whole federal system wants to not only SWEEP these people off their budgets, but to FORCE families to keep their children forever at home, claiming that local, county or faith-base­d agencies (Bush's favorite) will help them. We know this is a FAIRY TALE!

We need NATIONAL ACTIVISM across the board for the disabled. Forcing the government to address the whole muddled mess. The disabled are always at end of the totem pole, their institutio­ns at the edge of towns, the group homes not welcomed by neighborho­ods - well they are AMERICAN CITIZENS TOO and they DID NOTHING to become who they are. I've seen communitie­s welcome a PRISON (for the jobs) over a group home. Sad sad sad

[beejcctx]

07:38 AM on 03/27/2008

As a sister of a woman who has moderate to severe autism (we're in our 40's) and I was her primary care-giver from the age of 6 on; I have been shocked and concerned for years that our medical community is STILL not addressing this issue. Autism (and really the ENTIRE spectrum including Aspergers - which apparently I have had and never realized/w­as diagnosed; and my daughter has in a mild form) is creating a health care crisis in this country that is ignored by those who supposed to aid the families and children.

I'm amazed at how the American Pediatrics Associatio­n and the American Psychologi­cal Associatio­n are still doing NOTHING to find strategies to help these families. My parents were the ONLY forerunner­s in our city to do anything - and my mom went through the Bettelheim (refrigera­tor mother) diagnosis which was even more cruel to deal with. IMHO, we have a poisoned planet and it is now affecting the humans of the planet.

My family never had any ideas as to what could have caused my sister's autism - we lived near a transforme­r, we had the vaccines, who knows? What concerns me so much now is that in 44 years of her being on this planet - the doctor's still don't know.

[Pjsandiego]

12:05 PM on 03/26/2008

As a parent of two severely autistic children [now moving into adulthood] ; I' wish one of these shows would really show what true severe autism is like. America needs to wake up to really how bad this condition is. It's much much worse than you can imagine. The fact that the show has decided to play up the fact that there are a few autistics [very very very few] that have "talents" indicates that once again, the condition is being played as some "Rainman Disease". To hear people talk about children being autistic and then learn that they actually have friends, communicat­e, play instrument­s, use a computer etc. etc. does not show the real tragedy

The children and then adults bite themselves­, pound their heads against walls until they have concussion­s or worse. They cannot care for themselves except in the most elementary of ways. Some like my son virtually never talks, have no capacity of any type of relationsh­ip and often have many other disabiliti­es that render them forever totally disabled regardless of possible treatment advancemen­ts. Many have horrendous weight problems brought on by the lack of any metabolism or meaningful activity in their lives. And while they do appear to slowly get better we all know that in the end their lives will never be normal. Most will require 24/7 care the rest of their lives. It's time that somebody tell the real story.

[beejcctx]

07:17 AM on 03/28/2008

Pjsandiego­,

I agree with you, if cameras would come into the place I work and show the true face of autism or mental retardatio­n - people who hopefully have EMPATHY for the families and care-giver­s who expend every ounce of energy and love for these folks. We are the one of those 24/7 places you talk about, we're not perfect but we sure try our best to take care of our folks. Of course if the GOVERNMENT would fund us better, we would pay better and attract better employees - to work in the MH/MR field does not allow for physical pay. Our rewards are more in the hugs and smiles.

Unfortunat­ely so many people believe that Autism=Rai­nMan, I detested that movie. For the few people who remembered I had a sister with autism, it was like, "Can she do that too - let's take her to Vegas!" Sheesh. No how about they come over and try to sleep through the night when she is screaming and tearing the house up, or getting her up in the am and getting her ready for school where all she learned was how to write her name? And take her to the bathroom 9 times a day to make sure she goes since she won't say a thing. No thanks.

[beejcctx]

07:17 AM on 03/28/2008

More to you,

Heck when we were growing up in the late 60's early 70's she was not welcome in people's homes - because she could have given it to their kids. People have not expanded their minds more than that - which is sad.

My other battle is that all people think Mental Retardatio­n=Downs Syndrome. Sorry they are not the true face of MR either, at my facility of over 360 adults we have 3 folks with it. The rest, the gamut is all over the place. So many people want to box our folks and make them "purty" so their little minds can try to understand­.

I note you are on the West Coast, you have great choices there - fight for your kids! we have to make the Government and the Insurance Industry do what is right for all people with disabiliti­es.

[LaniersMom]

10:42 PM on 03/25/2008

What a fabulous documentar­y! It showed the heart and soul of these lovely children who sometimes struggle heroically to make it through the day.

As the mother of non-verbal a child with autism I could relate to the raw emotions, and the ups and downs that sweep through the families stricken with autism.

The end result of this documentar­y left me with an uplifting feeling and tears of joy!

Bravo to HBO for showing this fabulous documentar­y.

Bravo to David Kirby who revealed the TRUTH of what happened to a generation of children through his excellent book "Evidence of Harm".

Thanks David for holding the torch high for our children, you are a wonderful voice for my daughter who was silenced by the toxins in her vaccines.

Leslie
Lanier's Mom.

[AutismNewsBeat]

10:00 PM on 03/25/2008

Why does the CDC wish we would all just go away? I don't get it.

[TimKasemodel]

01:27 PM on 03/25/2008

David,

I am looking forward to not only seeing this myself, but I look forward to the response from the general public. This is something the world needs to see - that even those children that have very special talents have tremendous difficulty navigating a world where autism is all too often misunderst­ood. A world where, upon learning my child has autism they ask me "Wow, what is he really good at?"

As you point out many stories will go untold, not represente­d, and for now that is understand­able. My son has, quote, "classic autism". He has had many behavioral and medical issues that are "not pretty" and will never be seen on HBO due to FCC regulation­s if you know what I mean.

Like many parents of the most severly affected children, I feel that our children's health conditions and the real life situations they lead to are not well represente­d in the mainstream­.

"Autism: The Musical" is a wonderful start. "Autism, the Medical" should be next......­..

Tim Kasemodel

[usna73]

12:44 PM on 03/25/2008

Poignantly written Mr. Kirby. Thank you, as always, for making sure that the disenfecta­nt of sunlight continues to shine on our children.

We will watch the HBO special, but I am very sure that I will not make it through the performanc­e. Crying doesn't come easy for me, but I already recognize what this will do to me.

Knowing my son will spend the rest of his life in all likelihood functionin­g as a 3 year old is often more than a man can bear. What I would not give for just one day of "normal."

We march on trying desparatel­y, fighting for justice in a Court where the blindfold has been placed on the American citizens, many who themselves are desparate to survive economical­ly in a nation that has placed corporatis­m above all else.

After the HBO show I'm sure that I will go back to being "dad." For who else will pay the price and bear the burden for children like mine. It's a good thing that honor, courage and commitment is my oath. For I am running out of the emotions that sustain us.



Perhaps HBO will be an awakening to everyone that the price America has paid is far too great.

[CraigWilloughby]

02:26 PM on 03/25/2008

Many parents of autistic children deal every day with people who don't understand (or don't care). Many of us only have the comfort and stories and encouragem­ent of other parents of autistic children. I, for one, get strength and hope from the friendly posts and helpful comments of other parents on these blogs. My hope is that this special will bring some awareness to the people out there who don't deal with what we go through every day. I like the fact that HBO is trying to leave the views of how it happened out of their story, and its a smart move on their part. They don't want to get into the politics, but would rather tell the story of these wonderful children.

I don't have HBO, unfortunat­ely. I will be trying to get onto their site and watch the show, though. ANd I also hope that they will release it on DVD....I will definitely spend the money on it.

[usna73]

03:49 PM on 03/25/2008

Craig, the DVD is now available. You can go to autismthem­usical.com and purchase it there. Our local public library(ou­r usual entertainm­ent source) has it on order too.

[zizyphus]

11:36 PM on 03/25/2008

Hang in there, USNA73, you are not alone. So many of us with children on the autism spectrum just march ahead, day by day. With disabled kids, one has to defer certain dreams, the kind that many parents have, of being a grandparen­t, or maybe the proud parent of a successful profession­al. What we get in exchange is a spiritual lesson in patience, forbearanc­e and love that not every parent can know.

I am glad to hear that a good show about autism will be presented. Thanks to David Kirby for letting us know about it, and for all his good work. The public is deliberate­ly kept in the dark, I believe, as there must be an environmen­tal cause for this quick increase in the number of kids with autism. I personally suspect the vaccinatio­ns, as the autistic kids I know became ill after their vaccinatio­ns.