Monday, May 11, 2009

Carol Grigg of ASPIA Responds to ASAN

In a recent petition, ASAN called upon clinical psychologists Tony Attwood and Isabelle Hénault to respond to the concerns of the Autistic and cross-disability community by disassociating themselves from groups that falsely portray Autistic partners and parents as abusive, neglectful, or the cause of depression and other illnesses in their family members. The petition cited as an example the Australian support group ASPIA, which had an article on its website that suggested there was a "potential for abuse" by Autistic adults in family relationships.

Neither Dr. Attwood nor Dr. Hénault has yet shown any willingness to take meaningful action in response to our community's concerns, and we intend to continue our efforts to impress upon them the importance of ending all support for hate groups and damaging stereotypes. However, Carol Grigg, the founder of ASPIA, has written to ASAN expressing her desire to create a more balanced website and stating that she supports the rights of all people to be judged on the basis of their actions and treated equally under the law. She has removed the offending "potential for abuse" article and states that she is in the process of reviewing her links. In addition, she wrote:

I would welcome written information or links to good website resources that provide information from the perspective of Autistic adults in relation to managing relationships and parenting, with a particular focus on the communication difficulties.

ASAN places a high priority on identifying and developing resources for use by counselors and others who seek to promote a constructive and stigma-free approach to improving family relationships, recognizing the need for both partners to share responsibility for communication problems. We hope that ASPIA will work productively with us in this endeavor, and we intend to follow up with further discussion of changes and commitments that we want to see.

We would welcome specific recommendations from the Autistic community regarding helpful resources for positive family counseling and partner support, materials that may still need to be removed from the ASPIA website, and other related issues.


Clay said...

Well, that's good news. I think I'll write to her. I have experience with all the problems they talk about...

asansouthwestohio said...

Thanks Clay. The post has been edited to clarify that ASAN would welcome suggestions for good resources too.

Anonymous said...

I was looking for that article, but couldn't find it, found this blog instead.

I thought the article, in certain places, was a very good explanation of the effect my father's undiagnosed AS had on me.

asansouthwestohio said...

Anon: Of course, it is possible for Autistics, like anyone else, to act abusively. Such behavior is no more common among Autistics than it is in the general population, however, and stereotypes that attribute abusive behavior to "undiagnosed AS" are not based in scientific fact.

Anonymous said...

I'm not talking about people deliberately acting abusively. Like the article, I refer to the effect of a parent's AS behaviour on a child.

The nature of the "abuse" is very specific to AS. I wouldn't call it abuse as I know it was not deliberate, it was due to his AS behaviour, but as the article says, deliberate or not, the effect on the child is similar.

Is it so unreasonable to consider that having a syndrome characterised by difficulties with social interaction might lead to problems affecting those with whom he is in a social relationship?

The whole point about AS is that it causes difficulties with social interaction. And that has an effect on the people the AS individual interacts with.

If a man has AS, it does not only affect him, it affects his wife and his children.

asansouthwestohio said...

Anon, children often feel that they're being abused in all kinds of ways, from being made to do their homework to being told that they can't go out and play until they have finished their chores. As we grow up, we discover that life is more complicated than we once thought and that not everyone perceives the world in the same way that we do.

When I was a child, I got along much better with my Autistic father than I did with my very socially oriented stepfather, who was always pushing me to make a better impression on people and often seemed quite critical of me. I'm sure that they both meant well in their different ways.

Best wishes,


Anonymous said...

As I said, I would not call it abuse.

"being made to do their homework to being told that they can't go out and play until they have finished their chores."

That's hardly what I am talking about!

A father who cannot cope with change, noise, conversation, or empathy does not have a good effect on a child. A father who seemingly cares more about his special interest than his own child. Witnessing meltdowns is not a great deal of fun either. A childhood spent walking on eggshells. I do not blame my father for this, it was the fault of his AS.

I just don't think it is wrong for Carol Grigg to express concern about the effect on children. Having a parent who cannot respond in a normal social emotional way to a child, why can't we acknowledge that might have a negative impact on that child?

One of the Attwood books mentions an AS woman whose daughter got a foreign penpal. The woman told the daughter to correct the spelling mistakes in the letter from the penpal and return it, otherwise the penpal would not learn. The AS woman apparently could not see what a friendship destroying thing to do this was.

asansouthwestohio said...

Anon, I am sorry that you had those experiences, but please do not stereotype 50 to 60 million people worldwide as being exactly like your father. What you describe did not happen in my family or in many others of which I am aware.

People are individuals and should be treated as such. Stereotypes don't help anybody.

Anonymous said...

I don't want to stereotype people, but I also don't want to see people silenced for discussing their true experiences. Recently we've seen more and more AS people talk about their experiences, so why shouldn't their families also talk about their experiences?

"Stereotypes don't help anybody."

But apparently "Syndromes" do. People can have enough in common to be said to share the same syndrome. Stereotypes are very restricted, but that doesn't mean there isn't truth in them.

ATM it seems like you're saying "AS is a syndrome which affects social and communication skills, but if you suggest that the lack of these skills has a negative impact on those who interact with the AS individual, you will be silenced."

Understanding AS makes sense of life for the AS individual, but it also makes sense of their bizarre behaviour for the individual that's been living with them. Finally the wife knows that her husband really is different from other husbands, that she's not imagining it. How can you hope to deal with it if you don't know what you are dealing with?

asansouthwestohio said...

Pointing out inaccurate and harmful stereotypes does not mean that family members should not discuss problems or that anyone has been "silenced." Rather, it means that where communication difficulties or other issues exist, they need to be addressed in productive ways and with an acknowledgment of mutual responsibility, rather than just blaming the Autistic partner for "bizarre behavior."

As mentioned in the post above, ASAN is actively seeking to develop accurate and constructive resources to help people who seek to improve their family relationships. This information can -- and should -- include a wide variety of perspectives from family members, in addition to materials by Autistic individuals.

Anonymous said...

"actively seeking to develop accurate and constructive resources to help people who seek to improve their family relationships"

That is something I definitely support.

I find the idea that AS and NT should look at relationships as if they are from two different cultures to be helpful.

asansouthwestohio said...

Yes, as with cross-cultural relationships, a counselor should be aware that misunderstandings often result from differences in word usage, body language, and other social and communication differences and should address these issues in a nonjudgmental way.

Anonymous said...

The idea that this piece should be taken down is disheartening. What happened to a free and open discussion.

What if it was a piece about how a depressed parent can effect a child. There are many of us who had AS parents who have found much help by reframing our experiences w/ our parents. Unfortunately, my father didn't have the help he could have gotten to support him in his role of father. This article goes a long way in pointing others in my situation to understand what was happening.

Is this a stereotype? I don't think so. It's a caveat of what can happen and so necessary in so many families.

I'm sorry there are those who feel it's a stereotype but children, especially need all the support they can get and articles like this can give that to them.

Please, put the article back.

Those of us who grew up in families where we didn't understand the rages, the blunt, what seemed like insults, the emotional distance, aren't organized the way the AS community is. But we're here. we're not against anyone but we want information out there not stifled.

CatDiva said...
This comment has been removed by the author.
Anonymous said...

I haven't read the article that was removed, but in reading the previous comments, it sounds like it was a helpful article. Having grown up with an undiagnosed Aspergers Mother and brother, I had a very difficult childhood. If their Aspergers had been identified early on, then there would have been at least a chance that supports would have been available to me to mitigate the effects of her Aspergers on me. As an adult, I know she was doing the best she could, and it wasn't my fault, but I'm still recovering from the effects of growing up with her disability. (I'm a different anonymous).

Grafton said...

"actively seeking to develop accurate and constructive resources to help people who seek to improve their family relationships"

I've created an online group with that goal in mind, in response to the fact that most of them I could find were closed to autistic contributors or openly hostile to us.