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

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?