Recently, we learned that parents of children with autism were NOT more prone to divorce than other parents. This week, we learn that parents of GROWN children with autism ARE more prone to divorce. According to an article in Science Daily:
"There seems to be a prolonged vulnerability for divorce in parents of children with autism," says Hartley [one of the researchers]. "Typically, if couples can survive the early child-rearing years, parenting demands decrease and there is often less strain on the marriage. However, parents of children with autism often continue to live with and experience high parenting demands into their child's adulthood, and thus marital strain may remain high in these later years."
..."There is a lifelong profile of challenging behaviors and symptoms associated with autism," Hartley notes. "Few developmental disabilities appear to be more taxing on parents and there is a great need for support services for families when the child is an adolescent and adult. Providing support for couples to help them work on their marriages is an obvious step. If we can get information and support to these families, we hope to be able to support lasting marriages."
What I find a bit fuddling about this statement is the supposition that other disabilities do NOT require lifelong support services. Chronic and significant disorders such as cerebral palsy, Down Syndrome, spina bifida or schizophrenia don't suddenly disappear when a child reaches the magic age of 21.
Yes, it's true that there is a huge new "bubble" of individuals categorized as "adults with autism," and services for people over 21 have yet to catch up with need. And indeed, parents are stressed. But that in itself shouldn't account for the divorce rate being higher.
Perhaps one of the issues we are looking at (and this is just a guess) is the expectation that parents have, based on an awful lot of available literature, that if they work hard enough their child with autism will grow up to be an adult withOUT autism.
Many parents have sacrificed their time, money, energy, careers or personal growth for a child with autism. They've spent countless hours on research and care management. They've allowed their other children to fend for themselves. All of this, in many cases, is done with the belief that "if we deal with it now, we won't have to deal with it later."
In fact, though, the vast majority of children with autism will grow up to be adults with autism. They may be relatively happy, capable and engaged adults with autism - but even with all that, they are likely to need far more support than the average adult.
Perhaps the discovery that all that work, sacrifice and anxiety did not lead to a desired outcome, despite "advertising" to the contrary, is part of what makes couples finally split. Perhaps at some point one or both parents feel that life is for living - and it's about time to get out there and live.
Perhaps one lesson from this finding is that life is, in fact, for living. Not just at the end of life, but at the beginning and throughout. For parents who are giving it all up for autism, maybe now is a good time to examine priorities and reflect that mom, dad, brothers and sisters all deserve a life - as does the family member with autism. Perhaps the often-unreachable goal of "cure" or "recovery" isn't enough emotional nutrition to keep couples together or families intact.
I am endowed with Asperger’s.
There has been a lot of anecdotal evidence over the years which seemed to suggest that essential autism and Asperger’s are largely inherited conditions. More recently, various genetic studies have also suggested heritability, albeit from a range of gene defects as opposed to an ubiquitous easily identified gene.
Other evidence of heritability has recently turned up; marker proteins which showed up in the urine of autists also showed up in relatives. Abnormalities in eye movement related to following and focusing on objects was also found in undiagnosed relatives.
If autism spectrum conditions are heritable, and many close relatives show marker autistic symptoms yet are not considered autistic, then one must assume that either some of these relatives have very mild autism, or are excellent at pretending to not have an autism spectrum disorder. Some studies have suggested that affluent people are more predisposed to autistic children, even after bias for better screening and diagnosis is taken into account. It has been theorized that the affluence is possibly a consequence of thinking differently.
[Note, most people would consider me to be affluent; I am at the top of the engineering profession.]
If we assume that many relatives of the autistic have autistic tendencies, and if we we acknowledge that autistic people are famous for their lack of social skills, then it should logically follow that there should be more divorces of relatives of autistic people because they lack the social skills necessary to sustain relationships. The financial pressures from dealing with autistic children and young adults theoretically would exacerbate an already bad situation.
I haven’t invented the concept of autists not being ideal spouses, either; I understand there is a web site out there dedicated to the abused or emotionally bewildered spouses of Aspies.
I seldom see anybody touch on some of the other pressures autism places on marriage; two of them have been the predominate stress in my marriage. The first is disagreement on how to discipline an autistic child. Discipline disagreement is not unique to parents with autistic children, but it has a more bewildering aspect in this situation because the neurotypical parent cannot comprehend how the autistic child thinks and is motivated, and the autistic parent has the insight to understand how the autistic child thinks and is motivated, but cannot apply appropriate discipline because it is not politically correct.
The second major stress is having one or more sinister Aspie children with no empathy, who have the intelligence and desire to manipulate neurotypical emotions. They learn what pushes your buttons, and it becomes a sadistic game.
It seems to me that there is more stress on a marriage dealing with a child with autism who is:
- not receiving adequate treatments and therefore has significant issues affecting sleep, behavior, communication, toilet training, self care, mood ,and health,
than dealing with a child with autism who is:
- reasonably healthy, toilet trained, not in physical distress, better able to communicate and learn.
As in everything, there needs to be a balance. Yes, it is very important to reserve some time for recreation, rest, time with spouse, time with other children. But, still, if one can make some time to read about possible treatments and implement them, sometimes the quality of life for the whole family improves.
The serentity prayer is so important — give me the strength to change what I can change, the patience to accept what I cannot change, and the wisdom to know the difference. And I might add, give me a sense of humor and the capacity to enjoy the simple pleasures in life! I agree that life is for living – at the beginning and throughout.
But to blame marriage failure on the hope for recovery is wrong, IMO. Hope can certainly be a good thing. And finding helpful treatments can be a life saver — emotionally and literally.
Hartley makes good points about the continuing “high parenting demands” and “challenging behaviors and symptoms”. I expect that this is the stressor, more than the hope for recovery.
One thing these studies remind us of is how fallible studies are! Every week you can open the newspaper and read about studies which contradict other studies!
I wouldn’t blame the ongoing parenting demands, but the ongoing isolation that “normal” society seems to frequently inflict on families with autistic children. It’s been my family’s experience that, as the years go by, numbers of invitations to social gatherings fall off. When my son was young, my husband and I had numerous friends and a very full social calendar. However, we felt we had to turn down numerous invitations because of sensory concerns and concerns for my son’s resulting outburst> Now, even though we’ve learned long ago how to manage those numerous sensory issues and my son has learned to control his outbursts to the point where they essentially never happen any more, we’re essentially never invited anywhere. Over the years, most of our friends began using our son’s autism as a reason for just leaving us off the guest list. As a result, our little family has been forced to pretty much become the “be all and end all” socially for each other… and yes, that is very hard on a marriage and all our family relationships.
Furthermore, my son recently won tickets to a concert. He personally called and invited every “friend” he could think of just to get someone to use the second ticket. He was flatly turned down by everyone he called. I’m really tired of “normal” people who can’t even be charitable to give up one lousy evening to go to a concert with someone they don’t consider a perfect contact for climbing their own social ladders.
continuing… I heard on the news recently that a new flourishng e-business is “Rent a Friend.” Please tell me, in what humane society should perfectly nice people (even if they have a few social difficulties) HAVE to rent their friends?
Malia, how sad! Is there no autism group near you? There’s nothing like going to a social/recreational event (picnic, party, trip to the zoo…) with families also affected by autism. The good side of a 1 in 100 rate — we aren’t the only ones!
Here’s a good story about Holly Robinson Peete and Rodney Peete’s marriage:
http://www.sfgate.com/cgi-bin/article.cgi?f=/g/a/2010/08/06/hearstmagfamily695129.DTL
I am endowed with Asperger’s.
I was a little stunned by Malia’s remark that implies people will always have friends. It may come to a shock to her, but I am 56 years old, and have never had a friend in my life other than my wife. I have never been invited to something like a birthday party in my life, unless it was immediate family. I have never had an old acquaintance from school or work ever call or visit. I have never sat in a bar with a friend. I had only one date in the years before I met my wife, and that girl insisted at the end of the date she was planning to become a nun. (This is not a joke or hyperbole, it really happened!)
The closest thing in my life to a friendship I have ever experienced was having the opportunity to canoe with a guy a few times because his mother wouldn’t let him canoe by himself without another swimmer.
I have lived in the same place for over thirty years, but have never seen the inside of any neighbor’s home.
When I go to family reunions I am treated like I don’t exist. If I went to town, there would be nowhere I could go where someone would know who I am, except for the chance encounter with one of my normal children’s friends.
I am an intelligent, articulate licensed professional engineer who speaks five languages, and if I didn’t listen to talk radio, I would seldom hear a human voice besides my wife’s.
Hi Bill,
I didn’t mean to imply that people will always have friends… and I’m sorry if that’s what came across. Many people assume, however, that ALL people with Aspergers or autism don’t want to have friends and would prefer to spend time alone than with people. However, my son, at least at this point in his life, does seem to want to try to spend some “buddy time” hanging with guys at sporting games or concerts and the like. He certainly hated to see one perfectly good ticket to a great concert go to waste like it did. He has been trying this of his own desire… not at the request of myself or my husband.
The trouble is that the people he’s been approaching have consistently been rejecting him… and I cannot see a good “reason” why they keep rejecting him that way. Personally, I immensely enjoy spending time with my son… he is an intelligent, interesting conversationalist and polite and considerate of whoever he is “out” with. I have gone to events with him; but I simply can’t serve as an adequate substitute for the same-aged buddy that he seems to be seeking.
To answer Twyla’s question… Yes, there are several organizations around here, but this seems to be a need (or perhaps challenge) for my son that is separate or different than the one filled by spending time in organized activities for person’s with autism. I don’t think the autism group activities can fill whatever void he’s feeling any better than I can.
This post was about marital strains… I think this does put an added strain on a marriage over the long run. My husband and I’ve spent a lot of years trying to fill whatever that void is for my son… seemingly unsuccessfully. We know it’s just never going to be the same type experience for my son going to a ball game with me or my husband or an autism group than it would be going with a same aged buddy.
I hope Lisa doesn’t mind if I enclose a link to an article I read recently on a comedy-type website. Warning, it’s gets a little raunchy in parts, but I think it does make some keen observations about how the very nature of friendship has been changing in the 21st century for everyone… not just people with autism: http://www.cracked.com/article_15231_7-reasons-21st-century-making-you-miserable.html
My friend’s son has asperger’s. I’ve never been quite certain where that line is drawn between aspergers and autism, he never was able to maintain a “buddy” friendship, however, he does quite well in the dating arena. At one point he was dating an aspie girl and married her. I attended the wedding, they were both armed with a checklist of proper behaviors, and walked from table to table to do the usual rounds of greeting guests. They knew to hug, shake hands , thank people for coming ,etc.. but after they greeted, they said, “are you giving us money?”
Their literal behaviors finally ended the marriage when she suggested that she thought a man at work wanted to sleep with her, he said “well we are married and you aren’t suppose to go with anybody else”, she said, we can still be married. He had no argument, so she picked a night a week when she would go out with the other man. My friend asked him, “where does she go every Tuesday?”, and he told her, she said, ” Don you can not accept this, you tell her she must stop”, he did, she didn’t, they broke up. They broke up because my friend, Don’s mom, wouldn’t allow him to be in that kind of relationship. I don’t know what to say, he’s not my son, however, he didn’t seem to mind , and otherwise they were okay, they both had jobs, had purchased a house, and a dog and they seemed quite happy. I’ve seen “normals” in open relationships, I’m just not sure if this marriage should have ended on mom’s say-so or how much input we should have on their relationships.
My understanding of where the line is between autism and Aspergers is that persons with Aspergers don’t exhibit the delays in language development early on that persons diagnosed with Autistic Disorder (autism) do. Their impairments in the social areas and repetitive behaviors areas of the diagnostic criteria can be both more or less severe than persons diagnosed with autism. Similarly, a person diagnosed with PDD-NOS does not have sufficient impairments in the areas of social interaction OR in repetitive behaviors to meet a diagnosis of Autistic Disorder but does have language delays similar to autism AND impairments in one or the other of the diagnostic areas.
My son’s diagnosis was PDD-NOS based on a lack of sufficient repetitive behaviors to meet the criteria for autism. He did have significant social impairments and language delays. With therapy, the language delays were completely overcome and the many of his social impairments “disappeared” as language was developed. However, some social impairments do remain, although I don’t find them significant enough to warrant his “neurotypical” same-aged peers rejecting his overtures of friendship the way they continually do.
I have times, as a result, when I wonder whether all that therapy was a waste of time after all, not because it hasn’t “helped” my son, but because there is nothing I can do to “remodel” all of the other young people in the community so that they’ll treat him better. I do believe that computers and the internet have changed the way young people form their friendships overall and in a very basic way. It is not the same social world I grew up in. The social rules have changed for everyone and I’ll be the first to admit that I no longer understand them.
I hate to ask these questions, but I feel kind of lost with these data results.
What is the prevalence of Autism in adults with regards to this study?
I ask this because we have all heard it. That 20 years ago the rate of incidence was 3 in 10,000. This means today, those children are between the ages of 23-33. Does this really track the divorce rate of all marriages with a child with an ASD?
Ignoring that somewhat, there wasn’t nearly the community there is today. So people were much more isolated. So is this representative to what families are facing today? On the last point, interventions and early diagnosis have gone up WAY more in the past 15-20 years. There’s more opportunity to find a program that does work well for your kid today than there was then.
Just some thoughts….
Melody – this study doesn’t address prevalence, though your question is a good one and is much discussed on the Internet among members of the autism community.
You’re right about the topic of early intervention and children with autism. The study, however, was about ADULTS with autism – and programs/housing/jobs are pretty scarce on the ground once you reach age 21.
In addition, as I noted in the blog, parents are often willing to throw everything into early intervention with the expectation of a cure. When that doesnt’ happen, I believe, there’s added stress and frustration.
Lisa
Melody, I think what is skewing your thinking about the stats are the numbers of people who have been diagnosed after they reached adulthood. The 3 in 10,000 stat was the one cited before these diagnoses were made and it no longer applies. Whether or not the rate back then was actually the same as it is today (that is, if these adults had of been diagnosed as children) is a much debated issue; but clearly the rate was always somewhat higher than it was believed to be back then.
Another misconception is that back then, we didn’t involve our children in intensive therapies early on since the official buzzword of “early intervention” didn’t come into common usage until a few years later. However, many of us did. My son was involved in a therapy-based playschool ran by our local hospital. The program involved a 1:1 therapist/patient ratio broken into classes of 6 students and 6 therapists (of different disciplines). He was age 3 when he started and attended 4 hours a day 5 days a week for two years. After that, he was integrated into a community playschool and a therapist would coordinate his program of therapy with the child care workers at the school (as well as coordinate “homework” for me to work with him at home). Upon entering school, he had continued access to daily speech therapy (one-hour sessions) and a full-time aide int he classroom. In addition, he was enrolled in a “social modelling” class after school 3 days a week.
As I’ve repeatedly indicated, I’m hard pressed most of the time to discern my son’s behavior as being at all different from his “normal” peers. He no longer has significant meltdowns, can carry on a “normal” conversation, does attempt to be social, etc. If there ever can be a definition of “recovery” – I think my son exemplifies that. However, his “normal” peers have continued to ostracize him as though he were still having meltdowns at the drop of a hat… I can’t change them… and that does add stress into my marriage.
I would like to add that, even so, that doesn’t make us a family of pathetic basket cases. As Bill pointed out, people can get by and be happy without a lot of the social crap that goes on in society. My marriage is rock solid at this point despite everything my husband and I have “gone through” over the years… including, but certainly not limited to, our son’s autism. I agree completely with Melody that the logistics of isolating such statistics on marriages of parents of adults with autism seem somewhat suspect. I’m not sure I trust what the study says.
I also wanted to mention that therapy takes up time, not only the child’s time but also the parents. It made it more difficult for my husband and I to maintain many of our friendships. In addition to refusing invitations because we had concerns about our son’s various sensory issues, we also refused many simply because we couldn’t find a babysitter and even because we simply didn’t have the energy left over to be very social ourselves. Over the years, these friendships just faded from “lack of maintenance.”
I also wanted to clarify my references to how the internet, etc. have changed the social ballgame over the last 20 years. This connects to the fact that my son operates with a “social instruction manual” that was “written” 20 years ago. It’s out of date because while we were teaching him how to socialize based on the social rules we knew back then, the neurotypical kids were doing what they’re apt to do – change the social rules.
In the last 20 years, this has been a particularly huge change as avenues for neighbourhood face-to-face communication have dried up and been replaced by “social networking.” One premise behind social networking is not really the making of friends but the acquisition of useful contacts. Kids today “get ahead” by having great Facebook profiles with the “right mix” of people on their friends lists… and employers check those profiles and lists in order to sift their job candidates. In my son’s social therapy classes, he was taught how to say hello and how to shake hands… he wasn’t taught how to manage and sift the comments his contacts make on his Facebook wall or how to gracefully “unfriend” people who don’t add employment contact value to his friend’s list. As a result, my son functions better in groups that our “my age” not his, which means he hangs around with my husband and I and our remaining friends much more than a “normal” son his age… and, yes, this does add some stress into our marriage.
oops… bad grammar/Sometimers… s/b “As a result, my son functions better in groups that are my age not his.”
I am endowed with Asperger’s.
My apologies to Malia; Malia(4) being a stand-alone comment caused me to miss the general tenor of her conversation elaborated in Malia(3). After reading Malia(3) carefully it is apparent she should understand how friendless we Aspies can be, when her son can’t even bribe someone to go to a concert with him.
Touching on the autism marriage stress/divorce theme, and what aspects of autism spectrum contribute to divorce, my wife also complains of the lack of friends and social life, with the implication that not only do I not have any friends, but I have driven off her friends.
I noticed Melody(11) asked about about the prevalence of autism in adults; a British household study put the prevalence of adult autism in Britain at about one in one hundred, and that study likely understated the prevalence because it only counted households, and missed the institutionalized autist.
That 20 years ago the rate of incidence was 3 in 10,000.
Incidence is different than prevalence. I’m not aware of any reliable incidence studies for autism.
Two prevalence studies from the 1990s estimated rates of approx. 1:100 for all ASDs. Dr. Lorna Wing in 1998, and a Swedish study from about 1994. Wakefield actually cited the Swedish study in his patent application in 1997 or so.
Okay. Sorry to clarify as I emailed quickly before going to bed last night.
I’m an adult with Asperger’s Syndrome. Ms. Rudy, you met me at the ASA conference in July over a bowl of Queso.
I’m curious about the rate of incidence with regards to this study because I’m now 28, but did not get my diagnosis until I was 25. My parents stayed married until my father’s death three years ago. My brother also is fairly significantly affect with Autism as well, but was also never diagnosed. So it’s really hard to state that divorce rate if they’re not figuring in us “hidden” adults. The children like my brother and I are not being left out of today’s diagnoses like we were 20 years ago as evidence by my two boys. The two of them present fairly similarly to what my brother and I did at their ages, minus my youngest’s hyperactivity.
I do understand the isolation bit about not having the energy for social contact. Even if my boys weren’t in the mix, I don’t have a lot of energy for social contact. Luckily, I married a man who quite certainly feels no need for it once he’s done with work for the week. His ADHD fairly limits his ability to re-coop after a week long concentration run. He doesn’t have the social problems I have. We do things knowing our limitations and our children’s limitation.
But understanding those goes a long way for our family happiness. For one reason or another, sometimes marriages do not either have understanding from each partner, or the understanding is there, but the willpower isn’t. I don’t think either of those is bad necessarily. I don’t want to get divorced, but that’s because I love my husband and has fairly little to do with the strain of being a single mom.
He and I do our best to have a date once a month. Luckily, we have the family support. Luckily, my children have friends with families who understand their needs. So we do get to have that break. And we make a point to do it even if we are exhausted. Because whether or not our bodies are relaxing, it helps to recharge your brain. And we have conversations that we don’t often get to have when we’re wrangling up our two munchkins.
Anyways, my point is, it’s hard to just look at the statistics, especially if they’re flawed statistics, to understand what happened. Maybe in 5-10 yrs my husband and I will get divorced, but I’m banking on not. I do understand how not attending to the needs of your spouse can tear a marriage apart. And sometimes that happens when you have a special needs child. Sometimes it even happens when you have normal children. But if people do their best to not isolate themselves, and get together with others who are in the same boat, perhaps then we can change those statistics.
Ah, studies. Since there’s no mention of how ASD was defined (broadspectrum, from HFA to severe? or?) this study is useless. As usual.
Personal experience: my husband and I are committed to dealing with “stuff” – he repairs the things that get broken, does take-downs… I do research, paperwork and keep agencies in line. When our son went into an IRA, we discovered we really didn’t know each other. Really. Our common cause was no longer so immediate… add to that the erosion of peer social connections (a good way to reality-check a relationship) and I can see how divorce can happen when kids achieve adulthood. Not happening in our case, btw (sociology background saves the day – again).
Since the late 70’s local and federal governments have been using a new communication service called Terrestrial Trunked Radio (TETRA) for short. Tetra allows for multiple users on one or more channels which is quite different from conventional radio communications.
During the 90’s the use of cell phones increased and Tetra was adopted for that function also. This was about the same time that an increase in reported Autism cases occurred. Also during the 90’s to the present time an increase of the use of Tetra for Police and Fire and public works has been adopted nearly in every city in the United States.
There have been many reports that the use of cell phones can cause cancer or other brain disabling diseases. As with Autism everyone in my opinion has been looking in the wrong place for the right cause of so many children being afflicted by Autism. The idea about Thimerosal causing Autism was put out by those that were attempting to shadow the real cause of the disease. I am a very old individual that used Merthiolate to swab our throats for bad sore throat. Thimerosal was the main ingredient in Merthiolate. I never heard of anyone getting sick by using it.
Autism is not funny, it is a very serious permanent brain injury that affects many children in the United States. The search has gone on for some time now for a cause and a cure but nothing has been accomplished along either of these lines. Many web sites have sprung up and clinics have been established to handle the many afflicted by this disease. All are making money from donations to support the cause but it seems like the cause has been lost somewhere from the overwhelming amount of money that pours in monthly.
The average child 1 to 2 years old is the ideal antenna for Tetra communications. They are, on the average about the same height required for the 400mhz to 800mhz range. The problem with Tetra though is the pulsating transmission of a signal that can have devastating effect on the human brain. Whether it is readily apparent or shows up down the road has yet to be proven.
In the early 60’s Russia used a very low microwave frequency to blast the US embassy in Moscow which caused the deaths of several members of the embassy staff. Miscarriages, Leukemia and other illnesses were the cause for many to recalled to the United States or either died from the exposure.
The brain functions on a frequency around and very close to 16 Hz. Any pulses transmitted by any radio or low level microwave frequencies in the 17.6 Hz range could very well be devastating to a child’s brain activity. On the other hand if radio frequencies could be proven to be the cause of Autism then the same technology might be able to find a cure by injecting certain adjustment frequencies into the brain.
If you are sincerely interested in finding the cause of this horrible loss of brain function, I suggest you do as much research on low level microwave and Tetra and its use in the United States.
Who knows you might beat me to the goal of finding out how they manipulate our weather with microwave frequencies.