Autistic parents, and custody, and the dangers of mixing “emotional support” and politics.

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I just stumbled across the ASpar site again, and found the following in an explanation of the demographics of the ASpar organization:

We have had some people who said they were happy with their AS parents. However, these were less than 5 people, and all of these identified strongly as AS, are well known in the AS self-advocacy movement. They all have an obvious stake in not wanting an exploration of the negative side of AS. These members generally did not share their experiences, or offer support, but tended to chime in only to defend people with AS, and put the blame back on NT mistreatment of AS people. While it is historically true that AS people have indeed suffered enormous mistreatment because of their perceived “oddness”, nevertheless there was an unwillingness to accept that AS may create real obstacles to adequate parenting.

I joined the ASpar list when it was advertised merely as a group for people with autistic parents. It did not advertise itself as a group for people with negative experiences of their autistic parents, or a group for people who had no desire to understand their autistic parents but only to vent about how heartless they were, merely a group for people with autistic parents. I was interested in finding out how I might be perceived by any children I might have, as well as discussing my experiences with my autistic father, so I joined, not knowing what I was walking into.

I did in fact discuss my experiences and my experiences with my father. I even, contrary to the implication above, discussed both positive and negative experiences. I did not join the list with some agenda to prove that autistic parents are angelic and perfect, because I knew perfectly well that this is not true.

I did, however, have some interest in exploring the good side of autistic parenting styles. I had no idea that this would create the responses it did. I was told that my father must be “only very mildly affected” because he has things like compassion that are in fact present on all “ends” of the autistic spectrum (lacking compassion is simply not an autistic trait). I saw a fellow autistic listmember, who had done nothing more than treat people nicely, get asked, “You are so nice. Are you sure you are really autistic?” There was an actively skeptical and hostile mood toward the idea that any autistic person could be truly a nice person unless they were only mildly affected.

When I said that I could not handle these attacks on my father and on other listmembers, and the implication that “severity of autism” has anything to do with niceness or compassion at all, that in fact I found these things offensive and insulting, I was told that I needed to allow people space to vent because this was a support group.

I was stunned that personal attacks on my father — not even their own parents, but my father, who none of them knew — were considered venting, rather than attacks. I was stunned that implications that listmembers right in front of them could not be autistic and also nice, were considered venting, rather than insults. It seemed that the list had an unofficial but listowner-enforced policy of allowing hatred to be spewed at totally random autistic people, and insisting that if we did anything other than sit there and take it, we were not being supportive.

I was told when I left the list that perhaps later on, more people who had positive experiences would join, but that support groups attract people with negative experiences. I hoped that this would be the case, because I know, out in the world that is unfiltered by the misery-attracting nature of many support groups, at least as many people who have a good relationship with their autistic parents as people who have a bad one. By the way, it’s far more than five and not always any of the other things Singer characterizes us as either.

For the record, I have no problem with the idea that being autistic, and being autistic in the current world, can mean certain things about parenting style, even bad ones at times, depending on the person. I have no problem with the idea that there is a bad side to being autistic. The characterization of all who disagree with the direction and aims of Judy Singer’s “support group” (which is now much more than a support group, it aims to affect child custody research) as “unwilling to see the bad side of autism” is totally false.

The idea that because we are autistic (or “strongly identified as” autistic, rather than… what? “weakly identified”?), our opinions on having autistic parents is somehow of less value, is just as problematic as the idea that autistic parenting styles are automatically suspect because the parent is autistic.

Anyway, after I left, and after I was assured that maybe things would change, I stayed away for awhile. Then I checked back at the site for some reason. The site had taken on a much more negative, destructive tone than it originally had. There were now statements saying that people who were “strongly identified” as autistic (as opposed to people who just thought they might have some autistic traits), and people who had trouble reading social situations, were no longer welcome, and that the place was basically closed to all but people who had negative experiences and/or were willing to put up with highly negative characterizations. Characterizations that, from my experiences on the list, extended to all autistic people, not just the parents of the people on the list. So the list pretty much excludes anyone who can’t stand continual autie-bashing.

So the claim that it merely attracts people with a negative focus is no longer true. It now repels people with a positive focus as well as the vast majority of autistic people. It no longer just repels us inside the list, it now repels us outside the list, before we can even join.

Another change had taken place on the website, at that time.

The website had not only shifted to a much more negative portrayal, but was now taking an activist leaning in terms of getting involved in child custody law.

So not only had they decided to weed out nearly anyone remotely positive about autism, but they had now decided to try to affect the legal status and custody rights of autistic people. This is why support groups and politics should not be mixed. “Respecting people’s feelings” in the context of a closed support group, especially one as biased as this one, should not be the basis of attempts to shift policy change. Not when so many of us with different views are being repelled, and then mischaracterized as well.

I come from an extended family with both autistic and non-autistic members. I have been abused by autistic and non-autistic members of my family, and treated well by autistic and non-autistic members of my family. Anyone who thinks that I think all autistic family members are great or all non-autistic family members are awful isn’t paying attention. But neither is the reverse true.

I do believe that the idea of just acting like “a disability affects a family and we need to measure all the negative ways in which this happens and keep an extra close eye on parents with this label” is a very individual-model, medical-model, discriminatory way of looking at disability in general. I know of many good parents who have had their children taken away, or been threatened with it, because they were judged based on a disability label alone. Not to mention forced sterilizations and forced abortions that have happened for some disabled parents.

I’ve thought about having a child, or adopting a child. One thing that has stopped me is the potential that the kind of autistic-hating that takes place on that site (it’s not just about venting and sharing feelings, it’s about influencing policy with the results of those feelings, and not necessarily examining the feelings) could mean that I would have to fight for my right to keep a child from the moment the child was conceived. I have already encountered the prejudice of doctors who ignore my real concerns about parenting in favor of their stereotypes of what someone like me can and cannot do. Imagine that prejudice amplified by the idea that I am going to be selfish, egocentric, unwilling to get to know my child in a reciprocal manner, etc, as presented by ASpar.

Or for that matter, imagine my own family being ripped apart by these sentiments, either in my generation or earlier generations with autistic members. My family which, while having problems, does not have problems just because some of its members are autistic, but because people are people and people have problems with each other sometimes.

When there are questions about parenting, parents should be looked at as individuals, not diagnoses. There are plenty of selfish, nasty parents out there with no label at all and plenty of caring, devoted disabled parents, plenty of parents who don’t understand their children or who do understand their children (and this can be related to autism but it can actually go both ways, not just one way), and everything in between and the opposite as well. I simply haven’t seen the bias towards horrible negative experiences with disabled parents, or autistic parents, (or any other particular kind of parent) because I tend to avoid support groups and other places where misery congregates, so I get to see a wider range of people.

If this had stayed as just a support group, where people could do their misery-loves-company thing off in a corner somewhere, I probably would have forgotten all about it. But with the group claiming to want to influence policy and research, something needs to be said other than “Of course these people are right, and of course the people opposing them just don’t want to see autism’s bad side (and insert any other dismissive or negative characterization here that will allow our opinions to be conveniently dropped).”

And, on a related note, Venting or Hate Speech?

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

13 responses »

  1. This ASPar person says, “For the sake of brevity, I have been forced to strip these stories of their nuances.” So are they telling the whole story? What “nuances” have been “stripped”?

    I am not autistic. My son is. He is one of the most caring, moral persons I know. He will make a great father one day.

  2. The nuances that have been stripped are probably the nuances in most people’s lives.

    If I wanted, I could construct an awful pathologized description of my father the same way they did.

    But I seem to have these things like caring and ethics, too, that get in the way of that. It’s just not how I see him, not how I’m capable of seeing him, because it’s not how he is.

    I really dislike the implication, also, that the more “severely” autistic a person is, the less ethical they are capable of being toward a child, and that caring and empathy are things that exist in opposition to autism.

    I’m pretty sure Phil Schwarz is a good dad to his children too. I don’t see his son suffering from a lack of empathy in his father, I see him being able to express himself as the beautifully autistic kid he is in part because of his father.

    I used to know, online, a woman who was definitely regarded as severely autistic (actually intellectually disabled, then autistic) growing up, who could barely speak as an adult, and who raised a severely disabled daughter very well. Child Protective Services was always harassing her because she was disabled, but were always frustrated because they came and her daughter was well-fed, well-loved, clean, and so forth. They could not accept that an autistic person could be a loving, ethical, and empathetic parent either, especially an autistic person not regarded as “high functioning”.

    There are problems I still have with the idea of being a mother, so I haven’t decided yet, but if I don’t become a mother, it certainly won’t be because I’ve decided I’m too egocentric or something to properly understand a child. (It will be for some of the reasons, “surprisingly” enough, that many nondisabled people decide against children.)

    But I hope that if I decide to have children I won’t have people standing in my way on the basis of this stuff.

  3. What scares me so much about the ASPar site is that it very well might have the chance to achieve some of what it advocates. Take a similar field, marriage law, and this “scholarly piece” written by a someone who is prominent in the FAAAS/ASPar circle. http://www.mediate.com/articles/Linehan_S1.cfm
    The upshot of what its implications is a consistent policy of discrimination incorporated into the marriage settlement system. This is incredibly concerning.

  4. This site is despicable. Seeking for only negative accounts to support the web site “researcher’s” forgone conclusion, while banning any accounts that don’t support that is not academic research at all!

    The notion that autistic or any other parent with disability can’t be a good parent is absurd! When I was a teenager I attended a Baptist Church, (I’m Episcopalian now), and one member of our youth group was a girl who was retarted. Her mother was also retarded. They both were regular attendees, and from what I could tell her mother did an excellent job in raising her daughter.

    By the way, Amanda, for what it’s worth, I believe that you would make a great mother. That you are autistic, has nothing to do with your right to be a parent. I hope you don’t let this group of misled haters stop you from your dream to be a parent. THAT would be a tragedy.

  5. I just wanted to say that my father as I was told is autistic, however I am not. I am a married female, with a full time job as well as a part time college student. I was given up for adoption when I was an infant and do not know my father. I’ve been trying to find information on autistic people who have had kids…I am worried that if my husband and I have a child it will be autistic.

    what was written here has given me hope. I did not know that there were different forms of autisim and I am learning slowly.

    I have yet to find my father and mother, I am too afraid of how my father may truely be.
    But from what I’ve read, it seems that not all autistic people are…screwed up.

    thanks.
    Shari

  6. Yeah…..a lot of us are very far from screwed up. People’s attitudes towards autistics can be more screwed up than autistics themselves…….

    Ivan

  7. I don’t yet know any autistic people in “real life” … that I know of, at least, and not counting one autistic man who I knew very briefly some years ago. But just judging by what I’ve read on line, I agree with Ivan: people’s attitudes toward autistics can be more screwed up than autistics themselves. And to that I would add, if some autistic people seem screwed up, in many cases it’s probably other people’s screwed up behavior toward them that screwed them up a lot more than the autism itself.

    Shari, I hope you will also go on to read other autistic bloggers on the web … there is the Autism hub, and Amanda links to many autistic bloggers (and other disabled bloggers generally) in her blog roll. Try http://thiswayoflife/blog and http://qw88nb88.wordpress.com/ as two examples.

    Before reading the comment, I re-read this post (I probably first read it a year ago). How sad that this so-called “support group” has taken the direction it has.

    I see a rough parallel, though, with the admittedly little I understand about the history of groups for “codas” (children of adult adults). Apparently early on, maybe 30 years ago or whenever it was that “codas” started gathering together into support groups, the main activity was complaining about how awful it was to have deaf parents. In their defense, most “codas” who were growing up 40, 50, 60 years ago genuinely had more to complain about. There was apparently a habit in many Deaf families back in those days to lean pretty heavily on hearing children to interpret between them and the hearing world. In part this was because there were fewer options back then: no technology then to let them use the phone independently, for example, and no professional sign language interpreters and no laws protecting their rights to access. In part this was also because Deaf parents back then did not understand as well as Deaf parents do today how incredibly stressful it can be for any child to be repeatedly thrust into situations where they are expected to take on adult-level responsibilities in accurately translating from one language to another in adult situations, including sometimes situations where accuracy in translation can have literal life and death consequences (eg, medical situations). But it did mean that in the early days (from my very fuzzy understanding), coda groups basically meant groups for angry venting. It was only in later years that eventually coda groups became more balanced, where members could discuss both the bad side and the good side of having Deaf parents. I can only hope that there will be a similar evolution among children of autistic parents. (The biggest of these is CODA — Children of Deaf Adults–in case you’re curious enough to investigate the parallels for yourself.) Though it seems the particular group talked about in this blog post will probably not be a part of that evolution :-(

  8. Two years ago I researched support groups for children of parents with Aspergers. I found the Aspar site was not going to be suitable for my needs and chose not to join.
    I could recognise the anger and frustration of some of the members. (Lets face it life was far from ideal when issues associated with Aspergers ‘hit the fan’).
    However I was hoping for balance, positive support as well as honesty. Maybe in time as the person who spoke about CODA (see above) there will be the development of groups that can offer the kind of support I would like.

  9. Liz,
    I think it’s safe to assume there are other parents who share the same desire. I see some who leave comments like yours from time to time, both in this blog and in other locations around the web. And some supportive parents are also members of the Autism Hub (follow link from the nav bar on this page) and run their own blogs. Blogs are not support groups, though an active blog board I think can serve a similar function.

    So I think there is real hope that at some point one of these parents will start something, Maybe even you. Have you ever initiated or run a mailing list, for example via yahoo groups or google groups?

  10. It is a sad thing that when a disabled person (especially a nuerologically rather than physically disabled person) is selfish and/or misunderstands another person, it is blamed on the person’s disability. I think it is very probable that a lot of the ASpar members had bad parents, and they assumed their parents were bad because of autism.
    People do hav a tendency to have unrealistic expectations of their parents in general, though. I include myself in that.

  11. My mom married my step father when I was 10. Since then, he basically raised my brother and me. Now, 16 years later (and after my mother has left and divorced my step father), he was just diagnosed with Asperger’s Syndrome. It was very hard for me to be raised by a man who had this disorder, but mainly because it was not diagnosed until I was an adult. There are many things in retrospect that can be explained by his diagnosis but overall, he was a great dad… However, I didn’t realize what a good father he was until I became aware of his diagnosis because he always seemed selfish and, verbally, like a loose canon whose attacks were rehearsed and repetitive. I wish we had a support group that helped children with Asperger parents rather than simply attacking their parents.

  12. I have Aspergers and I developed an obsession with child custody battles. Mostly because I now see that my father should have gotten custody instead of of my narcissistic mother but it was the 80s when mothers could do no wrong. I have read about Judy Singer’s advocacy of automatically giving the NT parent custody over the parent with Aspergers and there is serious fault with her premise. In studying these battles I have learned that one-size-fits-all approaches do NOT work so let’s say that the courts take her position and give custody to the NT parent without fully investigating the case simply because the other parent has Aspergers and that makes automatically unfit. First and foremost that would be blatant discrimination secondly the law of unintended consequences will come into play. Let’s say that there is a custody dispute between an NT mother who is drug addicted and an Aspie father who lives with his parents and is clean and would provide a better home for the child. Would Ms. Singer claim that the child should be placed in foster care than be given to the Aspie father or even given to the NT mother despite the fact that she is drug addicted. Most people with common sense would say give the child to the father and a family court judge might even want to but because their hands are tied to the law that says that simply having Aspergers makes you an unfit parent the judge winds up placing the child in foster care until the mother cleans herself up. Would Ms. Singer advocate simply terminating someone’s parental rights because they have Aspergers? What a mess it would create and I hope that this is never taken up by the family courts.

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