Subscribe
Previous Post
Kurt Thometz is a rare book dealer in New York and the father of 16-year-old Adam, who has autism. Thometz is profiled in the August 11th New York Times (subscription only) about his search for a home for his family of three and for his 400 cartons containing some 10,000 books. Jim Dwyer relates Thometz’s longstanding passion for books with Adam’s beginning to use words himself:
……By the age of 5, Adam had not yet spoken an intelligible word — not Mommy, not Daddy, not milk or no. Mr. Thometz read to him every night for two and a half years. With Adam in the crook of his arm, the weight of the day on him, Mr. Thometz was reading Thomas the Tank Engine for the 200th time.
“Henry the engine,” he read.
“Green,” Adam interrupted.
Yes: the proper name was Henry the Green engine. Mr. Thometz had dropped the word. “He supplied it,” Mr. Thometz said. “It was the first time he had used a word on purpose.” And it was the first rung on the ladder he climbed from his isolation. Today, Adam, 16, entertains friends, plays music, and is thriving.
And now, long after the summer days have given way to dusk, a glow spills from the ground-floor window of the brownstone on 160th Street. Four letters seem to float in the window, cutting a silhouette into the light from the bookshop beyond.
“WORD,” it says.
Adam, it seems, was listening very closely to the words in the books his father read. I was struck by Adam’s speaking up about his father leaving out a color word, “green.” My own son Charlie finds it a challenge to put two and three words together on his own, and combinations of colors and nouns are the easiest (we have just started to teach him “big” vs. “small” for third or fourth time; I can see Charlie concentrating when I say to him “which is the big ball?” but he does not always get this right.)
A statement made about autism and divorce in the New York Times piece made me pause: Adam’s mother is Thometz’s first wife. The reporter writes “Adam, a son from his first marriage, had autism, accompanied by its common side effect, divorced parents.” The story about Adam coming into language late and his “over-fondness” for Thomas are familiar, but I have to wonder about saying that “divorced parents” are a “common side effect” of autism. Back in June the National Autism Association (NAA) announced that it was launching the “first national program to combat divorce rates in autism community” and cited a figure of 80%. I have also seen a figure of 85% regarding the divorce rate among parents of autistic children and am not sure about sources for these numbers.
It is the case that most of the autistic children that I know come from families in which the parents are married. While the NAA notes that “caring for an autistic child often can result in marital hardship and isolation,” among the autism parents whom I know who are divorced, the reasons for ending a marriage are highly varied. Raising an autistic child certainly makes family life different from what one might have imagined, but to say that divorce is a “common side effect” singles out autism, and an autistic child, as a specific marital stressor.
And from the New York Times article, one gets the sense that perhaps those many readings of Thomas the Tank Engine to Adam further instilled a passion for books in Thometz, and a sense of the power of words—something of a side effect I have indeed felt from raising my son Charlie.
I dont know about the 80% divorce rate in familyes with autistik children. But I can add my case to the broken mariage because of my boys condition. The change that incured in our lifes, anded by my wifes infidelity, to give up religion, a house, a husband and all the things that we worked for. I can say, the stressors had a big impact. I’m part of the divorced statistics because of autism and I met numerous people with similar situation.
Sad but true.
Dave
AA:
WOW I never said that the ex is autistic…I said “agoraphobic” because that’s what he has been diagnosed with….however…you have me thinking now. Very well written post.
Self-centered,forgetful, poor decision making skills, passive-aggressive, lack of empathy, demeaning and obsessive compulsive are just a few of his traits….my NT 16 year old is becoming more and more like him…
my now 8 year old autistic son is a sweetheart and I still have to BEG Daddy to be more involved with him….he shows up for a school meeting here and there for show. Grandparents are still paying for SOME therapy in my home but they don’t understand ABA and want to scale back because Daddy (their son) told them it’s a waste of time. What nerve! See what I have to deal with…they don’t see the behaviors I am trying to correct with ABA so they don’t think its necessary! How myopic can you get.
Any, perhaps Daddy is on the spectrum or mentally ill… WHATEVER the case,his parents enable him still, and he lacks the ability to take care of people. He certainly couldn’t take care of my emotional needs. I don’t know why I married him, but I was young and I guess blind!
@Jeni, Obviously I am way overdue writing back—-Charlie having autism has been, unconsciously, a sort of catalyst for a lot of family “stuff.” One thing that has become apparent is that denial can lurk very deeply in a family……..
I had an autistic husband like Jeni’s above.
Childlike, unrealistic, couldn’t do anything for himself. So self-centered he made a poor parent over long periods – he would burn out on care and not be able to multitask.
His parents were glad that I took him onto my back – I realized too late that he was too heavy for me to carry. Then I had a kid to deal with on top of the childlike dad. I don’t want to “enable” the son to be like his dad. It’s OK to have vulnerabilitites and problems. We are all born different. How we survive in life to take that into account is important, though. The hopeless father wants more custody but the chaos he brings into our lives by forgetting/losing/not caring/dodging responsibility/not paying attention to safety issues is nothing short of crazymaking and in spite of this, it is actually a challenge to represent this in court. Because a healthy spouse enables the autistic one in order not to risk bad effects on the kid. This allows the autistic one to keep sailing along with the habitual cushion keeping them from hitting cold hard reality – because who wants one’s own child to hit the concrete sidewalk? You will do anything to prevent this, so you run along behind them picking up all the junk they drop in their heedless path through life.
Check out this article:
http://www.aspires-relationships.com/articles_high_conflict_and_as.htm
1261 days ago
[...] having a special-needs child is a ticket to divorce court is anathema to some families. It was a subject of debate last year on a blog on the autismvox.com Web site, where many posters said that dealing with autism had made their marriages stronger. Indeed, the [...]
I am (still) not quite sure where the 80-85% divorce figure comes from without citation, but here are a few references on the matter. As noted in the Pediatrics paper, there is limited research (or at least not easily located), and somewhat inconclusive. This seems to make sense, since even looking at general population statistics on divorce, there is disparity on the reported numbers and factors.
Higgins, D.J., Bailey, S.R., Pearce, J.C. (2005) Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9, 125-137.
” (…) Impact of ASD on family functioning
A total of 87 percent of the primary care providers of the children with
ASD in this study indicated that they were in a stable relationship, with 83 percent of their partners being the other parent of the child with ASD.
Seventy-six percent of the primary care providers indicated that they had
never been separated or divorced. (…)”
Montes, G., Halterman, J.S. (2007). Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119(5), e1040-e1046
“(…) Research on the impact of having a child with autism on the probability of divorce is inconclusive.[1,11,12] Although not focused on psychological functioning, one population-based study [13] found that children with autism in the United States were equally represented in 2-parent families compared with children without autism.(…)”
referencing:
1. Higgins DJ, Bailey SR, Pearce JC. Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism. 2005;9 :125 –127
11. Hayes VE. Families and children’s chronic conditions: knowledge development and methodological considerations. Sch Inq Nurs Pract. 1997;11 :259 –284
12. Hecimovic A, Powell TH, Christensen L. Supporting families in meeting their needs. In Zager DB, ed. Autism: Identification, Education and Treatment. 2nd ed. Mahwah, NJ: Erlbaum; 1999:261 –299
13. Montes G, Halterman J. Characteristics of school-age children with autism in the United States. J Dev Behav Pediatr. 2006;27 :379 –385
This is not discounting variables of parental stress or marital disruption which were reported as elevated.
Patty and loves choc milk and Kristina
Read my posts from last November. Now, having read your stories….please contact me for support.
My ex-laws are still in denial/shame/blame…they have a lot of $$ and have offered to pay to “cure him”…. they donated money to help us get a “special ed lawyer” who in the end did nothing for us… that was a year before the divorce. They always used their $$ to “help” their son…what happened? They raised a son who never finished college, and for the last few years of our marriage, didn’t work for 6 years because he was tired of working. He was 40 at the time.
I don’t want the ex-laws money, but I do let them pay for my other children’s college. They are known to help community members in need and are very active in their church…have the autism sticker on their Cadillac and their Jaguar… all show! When it comes to facing the tragedy of their son’s childs autism and his own divorce? It’s like a cancer you don’t talk about. They don’t offer to take my son, who lives with me. They babysit for a few hours a month, if that. They watch him for the ex when he is “supposed” to have him every other weekend. I am the sole provider. Buying my son shoes once a year is not going to make an impact. I am the one who deals with him crying, his tantrum’s, not sleeping, hitting himself, etc. When the ex has my son, I get called if he has a fever. He forgets to give him his prozac, and for 6 months my son was afraid of the shower after spending a weekend with Daddy. Never got to the root of that. Daddy goes to the gym instead of dealing with his son. Daddy couldn’t deal with raising teen boys, having a wife who was the bread winner, having a wife who’s elderly mother is schizophrenic…couldn’t work because of his own “agoraphobia” and other issues….so he found a reason to leave. Does Did me a favor, I say! My son is doing okay, I lost my job this spring. and am home with him…meant to be, I think.
Back to the Original Question: Is Divorce a Side Affect of Autism? Almost certain, if the relationship had underlying issues, secrets, denial, and shame. The shock of having your white picket fence life being shattered either renders you weaker or it makes you a survivor. I had a crappy childhood, so I am naturally one to get back up again. The spouse living the sheltered life CANNOT cope with autism, or mental illness, in my opinion.
Thank you for venting—-we lived with my in-laws last year due to the school situation for my son and it was very, extremely difficult on us. Do you ever get a “break”?
We have little-to-no contact with either side of our family. On my spouses side, there is a scholarly neuroscientist/writer; several PhDs/MDs; many teachers and therapists. On my side there are MDs and health professionals; business leaders (some excelling with their ‘disabilities’); scientists; and a bunch of … retired [very] well-off people. They have all pretty much unilaterally shunned us. It’s actually kind of humorous considering the charity work they’ve all done and esp. those who think they were at the forefront of the US civil rights movement — as they couldn’t be bigger bigots if they tried ;]
I am a 40 year old dedicated stay at home mother to two beautiful boys and married over 16 years. We have a son with Aspergers and severe mood disorder, bipolar. He is 11. We have a younger 5 yr old son as well without PDD but he does have some sensory issues. Our marriage suffers tremendously from this, because HIS family is steeped in anger, shame, blame and denial.(old world mentality) They are nonsupportive and criticize us and question us constantly and deny the doctors can be “right” that it’s behavioral. We’ve gone out of our way to explain, give books, information from websites, and even had my inlaws come to 2 different appts with us to see and hear for themselves, but they still are unable and unwilling to get that this is a condition our son will have for LIFE. Due to the major stress, my husband has become a compulsive spender with charge cards and frequents internet adult sites, we also sleep in seperate rooms because I AM physically and emotionally DRAINED after each and every day. My husband spoils our special son too as well as my mom in law, thinking it will “make him happy” My husband has verbally and emotionally been abusive, and has raged at our son, and is quite egocentric. I almost filed for divorce in Jan 08, but then took it back due to fear(panic attack actually) of how our boys will react and be devastated not having 2 parents around to bring them up. My husband has betrayed my trust(hid $ from me and still lies about it) and now just borrowed money from his mom to alleviate the $ burden HE placed on our family due to hobby spending on his charge card.
I would think the divorce rate IS sky high with special needs children WHEN the husband CAN’T cope and gets abusive or shuts you out #1 and also when extended family is NON ACCEPTING and/or BLAMING on the MOM especially! they don’t want to hear why my son physically assaults only me and his younger brother. They also can’t accept he is on meds, abilify and lamictal. Needed to vent, and need to know if other moms are on the verge and how to cope with in-laws who blame and deny AND husband who can’t cope. My husband actually had a physical fight with his sister and they wrestled on her floor over this! I’m getting ill over all this and for now have decided to 100% detach from them. My husband and I do go for therapy, but with limited change on hubby’s end. He puts on the pity trip and says he needs a “break.” Thanks for letting me vent and share my pain.
I just have to take a sec and respond to Mary. You are not alone and many dads/husbands ‘deal’ with these issues the same way.
Kristina’s husband is very involved and quite different from my own husband…
it does not make me love him any less that he has trouble with all this stuff…we joke a lot about it and accept that each of us has skills the other does not. (I could not support us financially)
we do often joke about the D-word and I always say that in the event of a divorce, its 50-50 and I dont mean money. (I mean custody!)
the inability to look polished on a tight budget and no time is really demoralizing, I agree.
i am a mom with 2 children under diffrent end of the spectrem my 4 year ole is a nonverbal autistic. an my 3 year old has asbergers… i find my self lost an alone. dealing with it my children. hudsband is of little help. he thinks all he has to do is go to work and the rest is up to me to take cair of the kid. take them to the theripes pay the bill an budiget the money. geting involved in the programs tend to the house so now i dont have any of me left we sleep in difrent bed room i am at the opeset end of thhe house in my own room it is my only time i get to be by myself. i only get two baths a week that is all i have time for an even then my boy are standing right there watching me… i feal it is to late for my marige. but yet i am scaired that if we do seperate how will it afect the kids!!!
Thorton, as I think I’ve written here and elsewhere, if I’m not one, I’m pretty damned close to being one, kind of a half-aspie or semi-autie. (and we know what Barack Don’t You Dare Mention My Middle Name Obama thinks about semi-autos, er auties).
Aspiemom, I think I’m going to go fix myself a tuna sandwich and eat it, right now.
What King Arthur said to the Black Knight in the Monty Python movie, “The Holy Grail.”
There is a risk that smart people who have children together will be more likely to have an autistic kid, but better to be autistic than a loony. (Yer a loony! Graham Chapman to Black Knight, after cutting off all of his limbs.
I got over the self-imposed “guilt” when I found out the truth… mercury causes autism. Once I found that out , then it was easy to google around to find out about the paper mill I was pregnant near . Sure enough, the paper mill was one of the most toxic mercury polluters in that state , after researching reams of EPA & Superfund documentation. I ate the local catfish and rock shrimp in the area river and bay while I was pregnant. Its 2 + 2 = 4. I found out about all the science behind the cause of autism about a year after my son was correctly diagnosed.
It is a desperate search that I have found that some professionals who do not have autistic kids themselves do not comprehend, but it is a necessary step for parents to move on .
Hubby had been gone 4 years by then, now its 8 years. I occasionally mail my estranged husband these scientific studies from that area so long ago, sometimes to convince him that I am not at fault , and sometimes to ease his own guilt.
My son was not correctly diagnosed (Asperger’s Syndrome) until the age of 22 , three years after my husband left a twenty year marriage. He filed , we are not yet divorced, I have put up every roadblock possible to contest it, because he is the one in denial about what our adult son is capable of doing and not doing (he claims that he could make a “man” out of our son ), so clearly hubby is in escapism land, but I know that is false fantasy. I am in denial that he wants a divorce, he really does want a divorce, but since I am the one who really knows what is going on with our adult son on a daily basis, I keep hoping that estranged hubby will read enough literature someday to “grasp” it all. It’s a lot to ask of two people to always be at the same acceptance level at the same time
of lifelong disability of their only child. Sometimes I know deep down inside its just easier for me to handle this by myself. Me and my son have made a good life together, found three autistic/Asperger’s organizations in the area, and network and do many things with a lot of neat people :o)
The Feb/Mar 2008 issue of the Spectrum magazine states that this 80-85% statistic is false and has very little basis.
Ahh, another conflicting statistic in the autism community. Gotta love it.
Also, post my son’s diagnosis, my husband and I noticed various traits in ourselves that, while not pointing to autism, are similar to things that Charlie has (and include OCD, anxiety, attention issues…..).
I have yet to meet anyone who does not have some ASD traits. I’m not sure we can generally say that the parents of autistic kids have autism.
We tend to notice these traits in ourselves more when we start learning about them with our kids.
Maxine aston is a very bad women. She wants to enforce in every case of spousal abuse to check for aspergers. She promotes this image of aspies of being violent. I bet she would be insulted if we promoted the view of women being ignorant because of her
Sorry, I lost a word. I meant to say “the cause of the divorce rate.”