Susan's Blog

Tuesday, October 24, 2006

Opening the Refrigerator

What if there were some truth in Bettelheim’s theory of the “refrigerator parent?”

I do not mean to stir up a hornet’s nest, but I am an honest person, so I have to unknot these thoughts that occurred to me the other day. I was talking to a friend — well, not really a friend, but someone I have known for years but never connected with as a friend, though I tried — who has a son close to Nat’s age, a boy very committed to his ASD. I had not seen this friend(ish) in a while, and this time, as I hung out with her and experienced her ways, I was struck by a certainty that she must be on the spectrum. I felt this way because the way she has always come off to me is as cold, superrational, distant, stiff and awkward. (Please do not think that I am saying that all people on the spectrum exhibit these traits; I am commenting on the way her particular social skill set struck me, in an ASD light.) For years I thought that her treatment of me was something about me, that she despised me because of me. (That is where I have traditionally gone when I come across someone who does not appear to warm up to me; I assume they do not like me and that it is because of something intrinsically flawed within me. I have been from time-to-time, a classic low-self-esteem type who goes around believing, deep down, that I am flawed and that sooner or later others will detect it and move on, repulsed. These destructive thoughts have improved within me over the years and for the most part I think I have healed. Increasingly I have the wisdom to realize that what I am feeling when I come into contact with such a person is their own shit, rather than their detection of mine. Also, I have to deal with the fact that not everybody likes me, isn’t that right, Nasty Anonymous Commenter Whom I Delete?)

Anyway, all of this came across to me in a moment of great clarity, as I observed her treat everyone else in our little circle that had gathered after that evening’s presentation, with the same strange, condescending, sometimes insensitive, unpleasant manner, while at the same time realizing that she was trying really hard to socialize with us! I understood, finally, that the way I feel around her is not about me, or anyone esle there, but is truly and discretely about her. I had a flash in my head that said, “maybe she’s got Asperger’s.” And why not? Her son is very autistic; autism is largely genetic. (Buzz, buzz go the hornets. I’m going to duck and take cover after having said that!)

If you connect the dots, you begin to see what it is that Bettelheim might have been seeing. Rather than cold, unloving, rejecting parents, wasn’t it possible that he was observing the behavior of parents who were on the spectrum, albeit in a different location from their autistic children? How often do we hear about autistic children being born to “very intelligent” or “engineer-type” of parents? And then don’t we also often say that “engineer types” are on the spectrum? (Ned’s mother used to say, “just give Ned two pencils and he’ll be happy for hours.” I’m just saying!) The problem with Bettelheim’s conclusion is that he posited that the parents had rejected their children, the same way that I had once concluded that this friend(ish) of mine had rejected me. Bettelheim’s error was in concluding that the cold-appearing parents did not love their children. He appeared to have judged them as being flawed, cold people, when they were probably simply differently wired people who do not exhibit neurotypical modes of parenting. But if you start with the assumption that autism is just a different way of being, rather than a tragedy or a disease, then there is no problem with assuming that the parent may have it, too, and is not actually rejecting his own child but is actually behaving in a manner that comes more naturally to him. In fact, the parent’s ASD may make it easier for the parent to understand and connect with the ASD child, depending on how self-aware the parent is. Who knows?

This friend(ish) of mine loves her son and has done a tremendous amount for him. I can see through her awkward manner. (Just like I can see through Nat’s difficult behavior and understand that he loves us and wants to connect but is a bit stymied as to how to show it in a way that we appreciate. See page 195, MPWA) I remember her trials with his diet, medication, inclusion in the public schools, the joy of finding a good program, and then the heartbreaking decision of residential living. It appears that he has benefited very little from most of her efforts. For now. Or has he? Who knows, except him? How much worse might things have been for him had she not given what she did? Or would he have been different if he had been born to a mushy, messy NT(ish) mother like me? What would Nat say? (“Okay, yes.”)

I do not have the answers, just the questions. Maybe ASD children are often born to ASD parents, albeit undiagnosed ones. Not that there’s anything wrong with it!

21 comments

I love your blog posts. Keep up the questions and thanks for the honesty.

— added by enna id on Tuesday, October 24, 2006 at 10:08 am

Very interesting! Thanks for hashing it out – it’ll give me a lot to think about. And – just for the record – I like you. Very much.

— added by MOM-NOS on Tuesday, October 24, 2006 at 10:08 am

Are you assuming that your friend(ish) isn’t aware of and couldn’t possibly read your blog? Because if I were your friend(ish), I’d be very insulted after reading this post. You describe her as “cold, superrational, distant, stiff and awkward….strange, condescending, sometimes insensitive, unpleasant” and then wonder why you haven’t been able to connect with her as a real friend?

You really can be so unbelievable sometimes.

— added by Anonymous on Tuesday, October 24, 2006 at 10:09 am

Well, believe it, Baby!

I never wondered why I haven’t been able to connect with her; first I thought it was me, then, I thought it was her. You can be so unbelievable sometimes! And so cowardly. Fun to punch and run, isn’t it?

— added by Susan Senator on Tuesday, October 24, 2006 at 10:15 am

Just keep in mind that honesty is not the same thing as truth. Your perceptions are honestly given, but they may in fact be false.

— added by Anonymous on Tuesday, October 24, 2006 at 10:19 am

I’ve long suspected that some of the early doctors might have seen SOMETHING, but, if anything, I blamed it on parents actually LISTENING/paying attention to their kids, rather than autistic traits in them or the hatred or whatever that Bettleheim claimed to see.

For instance, my mother has always been pretty open about the fact that she never held me as much as she did my little brother. This is because if she held me or touched me in certain ways, I would either tense up or start screaming from the overstimulation. So, well, no duh. And I just KNOW how that and things like it would be read by people who were going in with the preconception that it was the mother’s fault. I also wouldn’t be surprised if autistic traits were misread as ‘coldness’ towards the child, which, I think, is kind of what you’re saying here.

— added by Mat on Tuesday, October 24, 2006 at 11:18 am

I’m wondering if your friend thinks about you in a similar way. I mean that in her mind she’s tried to be friends but you seem (to her) as emotional, ungrounded, all over the place, changeable, unstable and so on. I’m not saying you are these things, I dont know you.

Maybe she feels that whenever (in her mind) she extends the hand of friendship you indicate you’re not interested by… ah I dunno, start talking about emotions or something that she doesnt connect to.

Maybe it isnt either of you.

This was an interesting post, I’ve read the empty fortress and found a lot of it very interesting indeed. Not that I agreed with it, but yes, a lot of parents do have at least a few traits, i know I do… it isnt beyond the realms of possibility that Bettelheim saw this too, but came to a far different conclusion.

— added by bethduckie on Tuesday, October 24, 2006 at 11:35 am

Susan,
WOW!Well somebodys got to say it! How else does this stuff get talked about?
Thanks so much.I wasnt offended at all by this. I think Ive read enough of your writing to know where you are coming from.I couldnt resist commenting on this one. It brings up lots of mixed feelings.
My diagnosis is autism.Everyone who knows my father and knows something about autism is sure he would be diagnosed with autism. Hes 82 and recently had a heart attack. Hes not going to get diagnosed.
My mother is very caring and has helped me so much.I think my father REALLY hates autism. I think he hated the autism that he saw in me that he also saw in himself.
His method of teaching me was VERY similar to ABA. The old ABA. He never studied it. It came natural to him.
1)I never had a relationship with him. We havnt spoken in 13 years (his choice). I often wonder how our lives would have been different had others seen him as just being different and just an autistic who was different.I have to think it would have changed his life and how he treated me.
2) Now here is the difficult one. I have VERY strong feelings about ABA being good therepy for autistics.However, part of my acceptance jouney is about wondering if my father hadnt “fixed” some of the behaviors in me,society and/or therepists may have used even worse and more hurtful ways of “fixing me”. Not that I accept his methods much better by knowing that.Maybe its just about that I can accept him a little better and forgive him more by thinking of it that way.Forgiveness is important and healthy for me.
Thanks for your courage in bringing up the tough subjects and thanks for letting me comment.
Thanks, Ed

— added by Ed on Tuesday, October 24, 2006 at 12:56 pm

No question. The observations that led to the refrigerator mother hypothesis were simply observations, not case-control studies. But if they did observe something, it was most likely due to genetics. There’s substantial evidence of BAP in parents.

— added by Joseph on Tuesday, October 24, 2006 at 1:14 pm

Bettelheim may have observed this kind of interaction however this is still something extremely controversial because it is implied that the mother’s behavior is causing this instead of a genetic tendency. And therefore if it is a genetic tendency than perhaps the kids wouldn’t appreciate the typical NT interactions – so it seems that this is still looked at from an NT point of view. I think actually an AS parent may have more intuitiveness to respect boundaries, ect.

When we started exploring RDI for my son it became apparent to me that I was very uncomfortable with the exaggerated facial expressions and responses you are supposed to give the kids. So that was a factor in deciding not to continue with that therapy. Does that mean in any way though that “caused” my son’s autism – I don’t think so because as it has been pointed out many times alot of families have only NT siblings for the ASD child.

LB

— added by Anonymous on Tuesday, October 24, 2006 at 1:19 pm

Typo:
I have very strong feelings about ABA NOT being good therepy for autistics.

— added by Ed on Tuesday, October 24, 2006 at 1:27 pm

I want to be clear that I do NOT believe that parents “cause” autism in their children. My point is that some or many of the parents of ASD kids might be on the spectrum themselves, a factor which may cause others to construe coldness and lack of connection. This is what I meant about my “friend;” it is difficult for the two of us to connect and I have always wondered what the reasons are. I still wonder. But I no longer believe that she is “cold,” so much as perhaps on the spectrum. Perception does not equal truth but it is important to tease it apart in order to get at the truth someday.

— added by Susan Senator on Tuesday, October 24, 2006 at 1:38 pm

My real father(grew up with step-dad)and my full-blooded brother have both been diagnosed with schizophrenia. Chance’s father’s mother has recently been diagnosed as bipolar. The odds were against Chance even before he was thought of, as it turns out. A big regret of mine when I split up with Chance’s dad was that I didn’t get to have another like him. It has been five years now and I still feel this way a bit. It’s like mom26 said-once you have one, it doesn’t matter how many. I question my own actions and thoughts every day..wondering where I am on the spectrum, because I know I am there. It feels like my soul just moving in constant circles, picking up dust and then settling, over and over. Some days productive, some not so much. I feel just like this friend(ish) most of the time. This isn’t offensive to me, just very real and maybe even defining. I am teetering between advocacy and grief lately, all the while so far away, unattached. My own private age of Aquarius.

— added by mrs. gilb on Tuesday, October 24, 2006 at 1:42 pm

I enjoyed reading this post and your thought process. You connect the dots so well, and I can see the logic in it all. I, too, fall into that process of thinking that there must be something wrong with me when someone is cold. I got perhaps a different understanding of how to look at it and not take it personally. Ignore Anon’s comments. I think you would be easy to connect to as a real friend. All of your many faithful readers seem to think so, at least.

— added by marlene on Tuesday, October 24, 2006 at 1:58 pm

Susan – I don’t think that you are saying this is a cause – but that there is just a tendency in society(NT perhaps?) to want to psychoanalyze everything. So instead of being able to “see” some inherited trait they keep looking at this as a cycle of behaviors. And since psychology has this idealized image of how people should be than anything that doesn’t meet that standard is a “flaw”.

LB

— added by Anonymous on Tuesday, October 24, 2006 at 3:58 pm

Precisely.

— added by Susan Senator on Tuesday, October 24, 2006 at 4:00 pm

Thanks Marlene, Enna Id, Mom-NOS (we should get together since we are neighborhs and writers), Ed, for your kindness.

— added by Susan Senator on Tuesday, October 24, 2006 at 4:01 pm

Loved this post Susan. You’re great for getting me thinking in new directions. ASD genetic? That’s partly why I’m so comfortable with the Asperger’s diagnosis with my Ky – I look at my Dad, and wow. I’d say he’s Asperger’s to a T. And he did just fine without any intervention at all. Would things have been easier with more knowledgable help? Probably. Some guidance – not to change who he is, because he is a wonderful man, but to help him cope with the rest of the world. This is my goal for Ky. Not to change him, but to help him exist in the society where NT’s write the guidelines :o)

Me? I definitely show ‘Asperger-ish’ traits… where do I fit? Who knows, but I’m comfortable with me – well, usually. :o)

— added by JenF on Tuesday, October 24, 2006 at 4:03 pm

Too many comments, but when I read the post I was hit by the idea that possibly the idea of “refrigerator parenting” might be a symptom of ASD in the parent. Wow, what a concept. I had never thought of that.

Thanks for bringing out another great thought. To those who bash, you should be ashamed of yourselves. And to Susan, please don’t let the harpies bring you down. There are a lot of us who are not of that ilk where this blog is concerned.

— added by Anonymous on Tuesday, October 24, 2006 at 7:58 pm

I love your train of thoughts. I admire YOUR HONESTY. Few people SPEAK their own truth and examine their life as fully as you do.
I am a founder of a support group of ASparents in Dallas, Texas. I notice A LOT of my parents are on the spectrum. A lot of AS women types are very emotional and absorb the energy of those around them. I used to think my daughter was spectrumy but WAY different from her brother. I am now seeing for myself that MY AS traits have influenced how I PERCEIVE HER.
I love your writing style! I read your wonderful book and hope to read more in the future! I am a big FAN !
Hugs from Texas, Nance an avid reader of your blog

— added by nance on Tuesday, October 24, 2006 at 11:01 pm

I’m a bit late but….nice post! It really made me think. I have hashed this out in my mind before. That the coldness ‘observed’ might simply have been autism in the parents.

I am NT (ish lol) but wonder if maybe I treated my son differently at first because of his different reactions to my parenting than an NT child. I remember a parenting learning curve for myself after Patrick was born. Perhaps what was observed in the parents was how they responded to their children’s lack of reaction or interaction?

I’m a fan of your blog who loves your honesty.

— added by mumkeepingsane on Wednesday, October 25, 2006 at 3:24 pm