REVIEW: AUTISM THE MUSICAL
By Michelle O'Neil
I agreed instantly to do a review of Autism the Musical, a film that aired on HBO last week. The movie was gorgeous and I fell in love with every single kid in it. I fell in love with the drama teacher who's vision was responsible for the whole thing. The moments of brilliance on the part of the children. A girl named Lexi, who sings like an angel but can't carry a conversation. A boy named Wyatt who deeply and openly processes his own feelings and behaviors on camera. Gentle Henry who finally calmed down enough to accept a heartfelt compliment from a friend. A non-verbal boy, that seemed to have nothing to say, but then typed out a poignant message to his dedicated mama, asking her to "listen" more.
There were moments of tension, when a mother so used to controlling everything about her son's life, is forced to let go during dress rehearsal.
A moving, somewhat lonely scene of a mother and son lighting their menorah for Hanukkah.
But as I reflected on what to write about the film, the thing that kept coming up for me was marriage. This movie went right to the heart of what autism in the family does to a marriage.
Autism is not what any couple signed up for. Autism blindsided my marriage. Hell, it's blindsided the whole world. No one was prepared. The medical establishment flails about, with no real answers. Educators are doing their best but they were caught off guard too.
Mothers, bowing to the Google Gods have been forced to take on the role of researcher, advocate, teacher, attorney, psychologist, occupational therapist, vaccine expert, etc. I know there are many dedicated fathers, but unfortunately, they seem to be few and far between.
My own marriage, which I consider a strong one, was in peril early on. My child was a screamer. After two years of it, I was a wreck. I did not have enough emotional strength or fortitude to carry my husband when I was already drowning. I was overwhelmed and resentful. He was keeping us at an arm's length. Helping, but not a full partner.
If he had questioned my every move, with the diet, the therapies, the behavioral approaches? If he had undermined me? If he had whined and complained about my "lack of attention to him?" Please. I would have told him to grow up. To be a man. To think of his child. And ultimately, probably, to get lost. You want to be "just a paycheck?" Fine.
Thank God he got on board quickly. We are presently, closer than ever. Much less starry-eyed about each other than when we started out, but we've been through the war together and we are firmly in one another's corners.
The couples in this movie where the man left, or had an affair, because the woman was so focused on the child infuriated me. No question autism is hard on a marriage, but it seemed like the women were being blamed for their husband's behavior. Granted, much of the blame was self-inflicted, but I have to wonder, when was the last time these guys took care of their wives? Held them? Told them they were beautiful. Or better yet, BECAME COMPETENT ENOUGH WITH THEIR OWN KID THAT SHE FELT SAFE LEAVING, TO TAKE A BREAK AND REJUVENATE? Perhaps I'm being harsh. I don't know these particular dads. I do know the stories of many friends however, and I know how I used to feel.
I wish I knew what causes so many men to tune out. Perhaps I'm jealous that "as the mother" I never felt like I had that option.
Back when we were in crises, our marriage counselor told my husband to "get his head out of his ass." He also told me to "take my foot off Todd's neck and decide if I was going to forgive him and get on with it, or stay pissed."
If only more "autism" couples had such blunt instruction.
Autism the Musical. It's a brilliant film. A poignant, uplifting film. These are kids you want to know. It also happens to be one of the first things I've ever seen about autism that might make you feel you're missing out if you aren't involved in the community.
High praise indeed.
You can watch Autism the Musical for free on-line by clicking Here: Autism the Musical.
Michelle O'Neil is a writer and mother of a child with Asperger's Syndrome. You can read her blog Full Soul Ahead HERE.
It's very validating to hear that the brains of moms of spectrum kids are like those of war vets. One thing that struck me in the film was how much the moms had "aged" from the stress of their roles. I feel like I've aged 10 years for every year since my son's regression. When I hear people say vaccine -preventable diseases are SO BAD that a child might be hospitalized for a week, I would cry with joy if the last 4 years of living hell could be resolved so easily! I would pick Polio over autism- I'd pick any of them, (except maybe meningitis) over autism. And my kid is very mild...
The point that I wanted to make is that the stress of autism is too great even for two dedicated parents to cope with. Our families need support and help from relatives, neighbors, friends, ANYONE. Our kids are "collateral damage" from bad and dangerous public policy, but we are left to live with it often without any help. In my family, we've had relatives actively making things worse for us. No one should be asked to fight this kind of war, especially in the name of "public health", on their own.
Posted by: Avery's mom | April 05, 2008 at 04:21 AM
I would just like to mention a couple of books related to some of these issues.
One is "Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability" by Robert A. Naseef. Dr. Naseef is a psychologist and the father of a young man with severe autism. His own marriage broke up when his son was small, and he became the primary caretaker of his son. He now counsels a lot of parents of special needs kids -- individually, in groups, and at conferences.
The other is "Men Are from Mars, Women Are from Venus : The Classic Guide to Understanding the Opposite Sex" by John Gray. Yes, this may be pop-psych, but after years of expecting my husband to be just like me, I found this book to be very enlightening, and based in real life experience rather than just theory.
Posted by: Twyla | April 02, 2008 at 12:12 PM
Before reading this review and comments, I assumed that this movie would simply be a heart-warming story about some kids with autism in a play. I finally saw it last night, and was amazed at how honestly it portrayed so many of the issues affecting us and our families. I appreciate so much that those parents were willing to speak frankly on camera, and also all of the comments below.
Some of the people who so glibly say that we have a duty to vaccinate should see this movie and think again about whether or not chicken pox and the flu are easier to deal with than autism. Some write comments saying, "my child was in the hospital for a week with x disease - it was so terrible". But autism is life-long -- except for those rare cases of recovery through the biomedical treatments being ignored by the medical establishment, and even rarer cases of recovery through ABA.
BTW, Tanners Dad, your comment was not "a little disjointed"; it was very eloquent.
Posted by: Twyla | April 01, 2008 at 12:04 PM
In our house it's just the opposite. Our beautiful, loving autistic son brought us together; we started working as a team and respecting each other more because of him. Before diagnosis we were all caught up in our own petty demands... Our kid put things in perspective. Plus we are more careful when argueing in front of him, since he has such an amazing memory we don't want him reciting our fights years from now!
Posted by: Leila | March 31, 2008 at 06:27 PM
“But there are some terrific dads out there as well. We should be encouraging autism dads to be BETTER MEN rather than painting all of them with the same brush.”
Mark:
There is an IMPORTANT distinction between being a “terrific DAD” and being a “terrific HUSBAND” – unfortunately, you CAN have one without the other.
I don’t think anyone is suggesting that the men in this film are bad DADS – I think most of the comments were focused on their shortcomings in their role as HUSBANDS.
In addition, most of the comments were focused on the particulars of their own marriages.
I happen to agree with Kim. I think men are great – although there can be the rare occasion when a woman can get “duped” by one – and that can be a painful experience as we both know.
But the key is to forgive and move on.
Kelli Ann
Posted by: Kelli Ann Davis | March 31, 2008 at 01:57 PM
Kids put a strain on any marraige. But special needs kids are a whole different story. I think in these cases only the strong survive. Both parents go through so much together and alone at the same time. I watched this show with my husband and have to say I was aggravated at how he sympathized with the men. He said that women get so caught up in the kids they forget they have a husband too. Well, yeah my kids take up a lot of time and effort. But this is my job and I feel the clock ticking. My husband still gets time but he does resent the energy it takes out of me. I am physically and emotionally exhausted for the most part. and sometimes I kind of wonder why he isn't. I think he is afraid of seeing what our kids are actually going through. I think the reality scares the hell out of him so he keeps a slight distance. My marraige is strong but that doesn't mean it's easy or that we agree. In fact we piss each other off quite a bit with all this!
I think autism is different than a lot of other issues with special needs kids. We don't have a clear cut path to follow. We don't have the support of many in the medical community. There is no magic treatment and we never know if our kids are getting better or about to regress. When you don't know what the day will bring, you wake up stressed out. We have to remember our husbands and wives are our partners in this. It seems in many cases one parent shoulders the burden alone. I guess just like autsim affects every child in a different way, it affects their parents in different ways too.
Posted by: wktb | March 31, 2008 at 01:45 PM
I like to tell my older daughter, "men are pigs." The basic over-protective dad thing.
And lots of them are. It's clear that autism doesn't bring out the best in many fathers.
But there are some terrific dads out there as well. We should be encouraging autism dads to be BETTER MEN rather than painting all of them with the same brush.
Posted by: Mark | March 30, 2008 at 08:37 PM
I loved the segment when Lexi's mom was discussing the school's intentions for her. F word and all, man! She spoke for US. Fabulous documentary. xoo Michelle O'Neil.
Posted by: biomedmama7 | March 30, 2008 at 08:30 PM
Excerpt from conversation that took place shortly after 3 boys were diagnosed:
HUSBAND (who worked 7 days a week): I told you I can handle anything as long as there's no extra stress!
ME: And I'm telling you that I can no longer shoulder the burden alone of having 3 boys with autism. There will be nothing left of me.
He heard me and I heard him. We don't have as much money, we share the stress, but we also share the victories in our boys' lives. They are coming along! And so are we.
Posted by: Alison Davis | March 30, 2008 at 07:59 PM
Michelle,
You nailed it. I wish my husband COULD get his head out of his ass.
When you wrote about husbands attending to their wives, I nearly crumbled.
I remember Lexi's mother in the documentary saying that she and her ex-husband had different opinions about Lexi's quality of life. I think that is a pervasive theme throughout autism families.
Loved this movie. So honest.
Posted by: drama mama | March 30, 2008 at 07:13 PM
Kelli Ann,
I have felt this way for so long as well. It was so reassuring to me to hear another mother say those words out loud. I remember several years ago in an argument with my pediatrician about my refusal to continue to vaccinate...she said that I was risking possible death by not vaccinating...my response to her was that the risk of death was not worse than the risk of regression after we had come so far...she was horrified and I left feeling like a monster for saying it but it was how I felt. This movie touched me to the core. I loved all those kids so much..esp Lexi! How can anyone watch this movie and not walk away profoundly affected. Lexi's mom was so right...these kids are not valued and that is not acceptable and I will do everything I can to change this perception!
Posted by: Sonja | March 30, 2008 at 06:10 PM
I don’t even know where to start on this – it was just so incredible to watch!
The one moment I will NEVER forget is when I heard Lexi’s mom utter the EXACT same words that I had “dared to say” a few years ago to my husband in one of the most brutally honest and most painful moments of my life:
“I hope that he dies before I do so I don’t have to worry about what will happen when I’m gone.”
And then I wept deeply and said, “What parent would ever wish that for their child?”
To know that there is another parent who shares that EXACT pain totally took me by surprise.
I guess we all are in this together – emotions and all – aren’t we?
Posted by: Kelli Ann Davis | March 30, 2008 at 04:25 PM
While I was disgusted with the cheating dad, it also made me realize a man's perspective, and what HE needs from a marriage. My husband has watched me make autism my life's work to the point of obsession, all the while providing everything I needed to do so. All for the sake of our children. While he doesn't understand my maternal drive to help our kids taken to the most extreme I can manage, I also realized that I don't have the first clue about what he needs and wants from me and in my obsession, never even cared. Autism: the musical made me vow to make my marriage a priority, and not take it or my husband for granted. Thank you to everyone involved.
Posted by: Amber Berry | March 30, 2008 at 02:48 PM
My husband stole this from HBO's In Treatment, but after some comment about how 40 is the new 30 (HA!), he said, "oh yeah, have you heard men are the new women?" But seriously, he has been so offended at how mommycentric Jenny's book is, almost man-bashing, actually. (Just because he would appreciate it, here I will inject that he makes the week's batch of GFCF waffles, mills the flour, studies and applies RDI and goes to bed with P. to read books for school every night.)
But speaking of mommy health, Carrie, one DAN doc did some SPECT scans on moms and found we have the brain patterns of war veterans (PTSD), also I believe we all have exhausted adrenal glands (oh, I don't know how, 24/7 of trying to save your child's (children's) life, maybe?) and this is something that is not tested by mainstream medicine. Adrenal exhaustion brings on high blood pressure and a host of other health issues. We are in big trouble. The scary part is...how do we handle it? Even when the truth comes out (and it will SOON!) we still will have what we have at home to take care of. Hopefully, there will be a big ramp-up from the therapy, medical , insurance worlds, and the world will step in with treatment answers and money to pay for it, but I'm not holding my breath. Hold on, that's probably not good for the adrenal gland either.
Posted by: kim | March 30, 2008 at 01:09 PM
My husband Mark is a rock. I know MANY fathers who are doing phenomenal work for their families in all the same ways that the Moms do. And they bear the societal burden of "taking care of the family" on top of it. I run a Yahoo group for treatment - and we have many fathers who know as much and more than a lot of Moms. Let's not sell the men short. I kind of like men. A lot.
Kim
Posted by: Stagmom | March 30, 2008 at 12:36 PM
The marriages were what struck me most, too. Blah, blah, blah, the kids are strong. The MOTHERS are strong, and I know there are some strong fathers out there, but I don't know any. The documentary I want to see is how having these kids affects the mother's health both short and long-term. Kids can recover from Autism. Mothers? So. Hard. To. Do.
Posted by: Carrie Link | March 30, 2008 at 12:29 PM
My wife and I watched this together and I am glad we did. As we recognized the different marital relationships of the couples play out, we could not help to catch each others eyes and smile. Yes, I said smile.
I met Elaine (Neils mom, who ran the project) at a autism program called Son-Rise in 2000. This was before her divorce. It is no surprise to me she made this work. The Son-Rise program is taught at the Autism Treament Center of America, part of the Option Institute.
When our son was first diagnosed he was very sick (think poop, lots of it) and it was clear that one of us had to quit our job. She is the one with the Masters Degree, so I gave up my career in early 2000. This makes for some interesting dynamics that most families do not think of.
Being mom, but being gone all the time is tough enough emotionally. Then there is my house cleaning skills, laundry, how I handle my time, how I implement and follow the complicated schedule of changing supplement and dietary regimes, etc........ all things she wants to control but has to let me do.
Needless to say, it is demanding to try to do all the things she believes she could do better. It all boiled down to the fact she wishes she could stay home, but monetarily that is out of the question.
On the other hand, I wish I could go away for the day and come back at 7 pm with dinner waiting. I miss my job, my freinds, my sense of accomplishment (lets face it, the laundry and dishes are never "accomplished"). I wish I could have a regular career again, but that is out of the question for now.
I have been accused of being lazy and not wanting to work - because I do not want to be put into a part time situation, I want to have my career back (they keep asking me when I can come back). But because of the challenges of having a son who is very similar to Neil, nonverbal, impulsive, and still not yet fully toilet trianed, I would be the one who as to leave work to deal with the eventual emergencies. That is not going to work out well with any job. The additional income would be nice, but as a 46 year old man, I am not looking forward to getting fired from McDonalds for missing too much work.
We smiled as these relationships played out because we know how important it is for us to keep our marriage together. It is tough. But learning the Son-Rise program is what kept us from falling apart. I can tell you honestly if it were not for learning about Son-Rise and the Option dialogue process we would not be together today.
The greatest moment for me was when the dad of the boy who played the stringed instrument told how his son would pull mom and dad together and make them kiss when he got home from work. Our son, even in his most non-verbal, exclusive, autistic and gastro ravaged condition would come into the room when we argued, grab each of our hands and make us get close. He recognized early on that when we were close, hugging, we were usually not arguing. It always seemed to work to calm things down.
I hope HBO airs this again and agian, maybe each April for autism awareness month.
Tim Kasemodel
Posted by: Tim Kasemodel | March 30, 2008 at 12:23 PM
Michelle, I agree with your opinion of the documentary. I too was infuriated by the men - Adam's dad (I think that's right) blaming the wife - and because he has done it so much, she has taken the blame herself!!?! And Lexi's dad whining and complaining because his wife was DEPRESSED, clinically??!?
These two examples of marriage in families with autism are why I agree with Tanner's Dad when he says that "I agree with you that the actions of the men in the movie seemed to be justified very lamely. Although, I feel if this helps us start a dialog and develop some sort of supports for parents then the movie was for the greater good. I do not understand every time I see a father leave or have an affair. We need to come together and find ways to support the mothers doing the lions share and the Fathers who need daily direction." Well said Tanner's Dad!
What affected me most from the documentary was a scene very near the beginning of the film. Coach E had arrived at the orphanage in Russia to adopt a child. In walks the orphanage worker with Neal. He looks in the room and tries to walk back out; but then, the next frame is of Coach E rolling around on the floor with Neal. You could feel the connection. And then....the very picture of bliss. The camera slowly zooms in on Neals face. He is looking directly into the camera and as the frames pass his smile gets bigger. There is this moment when you realize that he is feeling pure love and happiness for maybe the first time in his little life. I cried and cried. I'm haunted by that face. It was beautiful. And still is.
I think his story was most compelling because for the majority of the film we see him as nonverbal and we share each victory his mother has with him using whatever sounds he can to try to convey what she is wanting him to say. And then, at the end of the film he gets his hands (or fingers as it were) on a new way to communicate, and asks his mom to listen more. It was amazing. And bittersweet for his mother, I can only imagine.
I loved this documentary. I put the link up on my blog and sent the link to everyone on my contact list. I'm so excited that HBO is offering the full length of the documentary on their website. It's awesome!
And while I have your ear, don't forget to watch Jenny McCarthy and David Kirby on Larry King April 2nd - I heard they are going to be debating the vaccine issue with medical officials...?? Anyone know more about this?
Posted by: Jeanne | March 30, 2008 at 10:42 AM
Michelle,
Great, review.....I have to admit I had no desire to watch it, now I do. Sometimes I feel like my life is so centered around autism - I want to run away from all things autism. The marriage aspect of your post hit home, I'm sure for all too many of us. I thought nothing could shake my strong marriage.....throw in a job loss and financial stress on top of autism and it's been a ride that I quite frankly want to get off! Hopefully we will make it through - but it saddens me that there are so many out there like us. So many moms working so hard to save our children, that we barely have anything left for our spouses.
Posted by: healingjack | March 30, 2008 at 10:32 AM
For the love of mitochondria, PLEASE do not vaccinate.
Thank you for an amazingly well-written and accurate depiction of autism life.
Posted by: Mito mom | March 30, 2008 at 09:01 AM
"Mothers, bowing to the Google Gods have been forced to take on the role of researcher, advocate, teacher, attorney, psychologist, occupational therapist, vaccine expert, etc. I know there are many dedicated fathers, but unfortunately, they seem to be few and far between."
I think dealing with autism is like having to endure a maximum strength hurricane, then be whipped around in a tornado of similar strength, trying to hang onto the debris whilst making sure that your child and husband are not sucked away by it. The aftermath, though one should not really call it that since its on-going and only just waxes and wanes with no prior warning, is devastating, isolating. You do not even know where your next meal is coming from because in the midst of the on-going rampage you need to pretend to live as if life is normal when it really isn't. In the midst of all this drama is the very active realization that there is no rescue mission out there waiting in the wings ready to bail you out. Just a non-stop on-going chant of - This is it, this is it, this is it....something to think about for all new parents out there debating WHO to really believe - the almighty medical establishment or parents struggling on a daily basis.
Posted by: Carla | March 30, 2008 at 08:50 AM
I may just ramble but as a dad in the heat of the battle I must respond with my review. I thought the movie was very well done for those of us in the community. It was a tough view for some of my friends. Many only watched the first few minutes (maybe the explanation of that is they are men). I think it is must view for any teacher, lawyer, therapist, doctor, family member (wasn't that grandpa so honest "I wish the boy would not be so bad"), and other support people.
Now in defense of my gender... We have flat out been told more support is available if I leave my wife. Men are designed to find a fix... In this situation fix is just about impossible and does not happen over night. Men are children that need attention and praise. We are not told anywhere what having a autistic child does to our loving caring wife. Once the walls of communication fall and blame, threats, digs, and drama continue everyday... I understand why men run.
I have done everything I can think of to learn, earn, support, and grow. I think there are days that I am lucky that I have autistic tendencies and do not feel the pain of those around me. I moved my family back from the big city to the family farm area thinking the support from Family, Church, and Friends would help. There are more tough days than good days.
I agree with you that the actions of the men in the movie seemed to be justified very lamely. Although, I feel if this helps us start a dialog and develop some sort of supports for parents then the movie was for the greater good. I do not understand every time I see a father leave or have an affair. We need to come together and find ways to support the mothers doing the lions share and the Fathers who need daily direction.
I am sorry that I was a little disjointed on this one.
Posted by: Tanners Dad | March 30, 2008 at 08:12 AM