Somewhere in between: the truth and fiction behind autism and divorce rates
Filed Under (Acceptance, Celebrity Advocacy, Family, Single Parenthood) by Estee on 04-01-2010
I feel manipulated. Not by a person, but by the many messages I am getting about autism and high divorce rates. Imagine me now looking through new eyes. Adam’s dad and I have been separated for little over a year now. Last night on TVO aired Autism The Musical and the BBC production of The Autism Puzzle (the latter which I found to be a good documentary…it is the second time I’ve watched it) and today on CNN (again) I am confronted with a deluge of autism media and I am sitting in my bed, alone, weeping, laughing at myself — weeping again. I might look to an outsider like Meg Ryan in some Hollywood romantic comedy. It’s not that I didn’t appreciate Autism The Musical. It’s just that I have to think critically of how a general public might view some of the very real comments — so real they made me weep. Take a look at this story before continuing to read:
Lisa Jo Rudy of About.com on all things autism (an autism mom herself) also recollects about Adam’s dad (from the movie — not my Adam):“Adam’s dad, now estranged from his mom, is bitter because of his wife’s obsession with Adam’s autism. Mom, meanwhile, spins out of control when she thinks her son’s cello solo will be cut from the final musical production.”Adam’s dad (in the film) suggests that he believes all autism moms suffer divorce because they are scrounging every ounce of information for the benefit of the child. Adam’s mom and dad are still together during the filming and the mom discusses how dad has had a long-standing affair, and she is clearly overstressed and bitter and I understand all of that.
As I’ve said, I’m looking through different eyes now. Yes, Adam didn’t sleep and I was so grossly sleep deprived. Yes, I was obsessed with finding out every ounce of information in a world that doesn’t accept autism. As a mother who loves their child (or a father — think Robert Hughes, Ralph Savarese among hundreds of other incredibly dedicated dads), this was the obvious choice. As an educated person, I read and study…and go back to university to get a degree in Critical Disability Studies. It is my way of dealing with things. I have a need to help Adam in this world that still does not offer enough programs, services, care, respect and inclusion. And I’m choosing to accept the choice with open arms. I’m choosing to move forward and continue learning from all the lessons on this autism journey.
Truth about divorce lies somewhere between anecdote and statistics. While I have compassion and I feel that this is so real for so many families, I have to question if we are all being manipulated. I am thinking of Jenny McCarthy and her story of feeling alone in her marriage with her autistic child. I think many parents feel alone when they are researching and searching for scarce programs — indeed there is a feeling of isolation that sometimes even extended family members will never understand. I remember the Autism Everyday Video and how the number “eighty percent of all autism marriages end in divorce” was thrown out as a matter of fact, rather than what it is — speculation. I spoke out about the “wanting to drive off the George Washington bridge” with the autistic child comment because it was used in a campaign to raise money for autism by making autism look terrible, not because I don’t believe or do not have compassion for the moments when some parent may be in a moment of despair. It’s all real, you see. The divorce is real too. Some partners do not want to deal with the responsibilities of raising children — particularly disabled children. Some partners do not leave just because of autism. The problem with using these stories in autism promotion videos is that it is used to sway our feelings about autistic people in particular. It uses autistic people as a crutch for the gamut of natural human emotion. People with non-disabled children also get divorced. People with non-disabled children also do unspeakable acts to their children. It is simply not fair to blame autism or disability as the cause for despair and divorce.
There may be some truth to divorce and disability, but statistics don’t necessarily agree. Apparently divorce rates, according to Kristina Chew’s article, are down and I’m particularly concerned when disability is used as the sole reason for a divorce. Kristina also writes: “Citing autism as the reason for a marriage failing can be seen as yet another reason for saying why autism is so awful. Taking care of Charlie is a privilege but it is not always easy. Childcare arrangements are a constant juggling act for Jim and me and we tend always to think of Charlie’s needs first, and of each other’s after that. We both agree that it should be this way. Jim and I would much prefer living closer to New York City due to our jobs but Charlie’s education comes first. We left the house that we planned to live in for 30 years in order that Charlie could have the right school placement. (And until this September we were living with my in-laws, which was very, if not too, interesting at times.) Jim and I have made many of our choices based on ‘what Charlie needs’ rather than on what would be best for the two of us and I do hope that, ultimately this will be best for the three of us.”
It doesn’t matter what stressors are involved in marriage — the more there are, the more vulnerable a marriage becomes. Some couples manage to work together, some do not. Sometimes, when the marriage is done and some of the stressors are gone, parents become better at working together. Sometimes challenges bring couples closer together. There is no magic formula and there are no right or wrong answers. Is raising a child with a disability more challenging? Absolutely. Should it be blamed for divorce? No.
What we need along with the compassion is to look at our sorry weeping selves in the mirror to ask analytical questions. Who is producing the video? Is it a real story or is a fundraising video? What is it asking us to believe? Does it pull on our heart-strings to sell copies? Telling truth means that the conclusions are not necessarily clear — at least not for public consumption. I for one, will not blame autism or Adam for my marital situation, even when day-to-day life is not always easy. In her article Genie In A Bottle, Shelley Hendrix in HuffPo discusses divorce, emotion and her autistic son: “For a very simple reason over the last six years, I have clung to the hope that my son Liam was insulated from the emotional distress that can envelope a child when their parents divorce. He has autism.
I worry like any other parent during a time of divorce. I too want to protect Adam, as all children of divorce seem to do, from blaming himself. I am particularly aware of how he manifests anxiety and worry that it’s because of divorce — and as autistic children are not unaffected, I must assume that there are days when his head wonders what the heck has happened. One day, like Liam, he may be able to tell me so, and I don’t think anyone should underestimate the effects of divorce on the autistic child just because that child seems happy all the time, or cannot talk, or does not appear to be aware of what’s going on.
Two adults are responsible for making it (or not) and society is also responsible for supporting marriage and families — particularly families who have more on their plates because of the lack of community supports. (And uh hum — who is going to want to provide supports when people — as the woman interviewed – discuss autism as worse than getting a root canal?!) Two divorced adults are also responsible for making transitions in life for the autistic child as smooth as possible, while respecting the child’s need to express their concerns which are manifested by anxiety (and we know as autism parents that anxiety doesn’t always look anxious, but also hyper). Adults are responsible for taking the responsibility. There is no easy answer for our lives in marriage or divorce; no predictions.
The work I must do for Adam still sits in front of me. The assistance he may require in his adult years is likely. I look at it this way: when a marriage ends there are new opportunities — to build strength and hopefully cooperation. Right now, as I myself am going through this new transition I have yet another opportunity to look at pity in the eye and step forward proudly with my autistic child.
Of course I would not be human if I did not wonder if more support, programs and information would have lessened the time I spent assisting Adam, coordinating his teams, his school requirements, his IEP, his communication devices and needs, playgroups… Would I have done things differently if there was more support out there? If I had had more sleep? This is a question I cannot yet answer. All I can say for now is that it was a choice grown from love and devotion. Choices have consequences and rewards. I don’t blame autism. I don’t blame a person. It’s what was meant to happen. The work we do today, I believe, may help others tomorrow. Adam, for one, will know that he is valued and that I valued the time I was married to his father. I value the lessons we continue to learn and the many joys and struggles on our journey.
I started the Joy of Autism blog in 2005 with the support of my then-husband who told me to “start a blog” not unlike Julia’s husband in Julia and Julia. He apparently believed that, like Julia, I “have thoughts.” :) He supported the work I did for The Autism Acceptance Project. But life, as they say, is “complicated.” Here we are. Who would believe that I think that even all of this is a gift?
I do. Now, on with the future.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
Excellent post, Estee. So apropos as I’ve been reading posts elsewhere written by women whose marriages may be in trouble and the issue *seems* to be about the child’s disability.
Wishing you and Adam a very wonderful new year.
What a gorgeous post! And how awful, awful, awful that people think of autism as worse than a root canal. Holy crap.
I love your ability to be clear on so many conflicting things: yes, raising a child is hard, especially a disabled child; yes, marriage is hard; and, yes, child-rearing puts stress on marriages, as does a whole host of other human events. I love that you can write about the difficulties of life without copping out and blaming Adam or autism. Our culture sucks at supporting mothers in general, and is even worse at supporting those with disabilities and those living with the disabled. How much we would all benefit if our culture could learn to shift from its focus on making money and consumerism and productivity to, instead, loving and supporting and understand the many many diverse human beings who make up our world.
Damn it – life is hard! I hate it when people go the “poor you” route… with anything. Everyone faces issues in their family, marriage, having a child with autism is merely one of them.
I am so grateful to have my partner in life striding along beside me, hands joined. Coming up to fourteen years of a marriage which we work on and try to nurture every day. Even with a son with ASD.
I’ve been following your blog for about four years and you have always been an inspiration to me. I agree with Madmother that life is hard. Estee, thank you for sharing your life with us. You come out shining!
Thanks for writing this provocative and thoughtful post about some very complicated and difficult issues. And thank you for quoting me—I reread the passage you quoted and it all still rings very true, the reality of how marriage can get pushed aside in the heat of the moment of caring for a child, however much the two people in the marriage love and care for each other. Not to mention that fact that, due to the difficulties of finding childcare for our son Charlie, we’ve tended to rely a lot more on each other for emotional support, and _that_ alone can put a strain on things.
So many challenges and, yes, complications, but I still, too, think of it all as a gift.
Warmest wishes to you and Adam in the new year.
Wow. Thank you. It’s hard. It’s hard beyond words. But autism simply exposes the cracks. What we do about those cracks is up to us, as married individuals. I can tell you this – I never thought this would be my marriage.
Life is hard, but I’d still venture to guess that more people get divorced over money issues, family issues (like caring for elderly relatives or even NT teenagers), or basic incompatibility than over any diagnosis that a child might get. Throughout my early years as a single mom I had never even met another single parent of even one autistic child- the 80% stat that’s bandied around so carelessly is pretty ridiculous as far as I’ve ever seen.
Divorce is never easy no matter how amicable it might be, and we often can’t estimate its results on our children, especially if they are non-verbal. But it’s also not always the worst choice that can be made, and two parents living happily separate are often better than 2 living unhappily together- I wish you luck in the months and years ahead. I don’t have any doubts that you’ll be able to pull it off with grace and dedication.
oddly, as I recently learned, a root canal is not so bad. painless, in fact! but that’s not really why I’m writing.
just wanted to note that I’m not sure that stresses are always likely to create a weaker marriage. I think it’s when the stresses pull people in opposite directions, or when one member of the group causes the stress (and could end at least part of it), that things can get dicey.
People do tend to pull together in crises… or when a situation is unavoidable and no one’s fault. But when the stress then turns into a permanent state of affairs that things get difficult. And when the stress could actually be avoided to some degree by a not-impossible change in behavior — when it’s “we’re stressed because mom has turned into a research machine and therefore mom is no longer behaving like mom” – then people start to feel angry.
And when that goes on for years, not days or weeks, it can get really overwhelming for the family.
A big stresser for us is that Tom really doesn’t thrive in public school, and so he’s mainly homeschooled. But we’re not financially able to say “you quit work while we homeschool.” So… who’s work matters most? Who arranges Tom’s curriculum, finds the right inclusive settings, drives him here or there?
Since we made this choice together, it’s easier. But there are certainly days when either one of our jobs or Tom’s education gets the short stick.
Lisa
I often wonder if it’s a daily agreement — tacit or otherwise. I also don’t underestimate the value of communication between parents — divorced, separated or married. I like to think that open communication is what holds thins together, but it might be more complicated than that.
What I believe in, though, is chances and new opportunities to become a better parent, and a better person. Maybe there are no “mistakes,” only opportunities to learn.
Estee, you did a wonderful job with this touchy topic. Raising a child with autism (or three) can be very stressful, but it does not end marriages. Just as there are many other stressful situations and events that don’t end marriages. It’s not the cause of the stress or even the stress itself, but the couple’s response to the stress that matters.
The only way I can see autism as a possible cause is if the two parents want to respond to the autism differently and incompatibly, yet both feel strong enough to fight for their own way. Again, autism itself is not the cause, but it’s the spark that lit the fire that burns the house down.
Well put, Stephanie.
Beautifully written. You have shown such respect to the world around you and the risk of pigeonholing.