Question:
There has been a lot of talk about "autism" on asd of late, and I feel somewhat responsible for touching off so much in so many by mentioning that my sons both have autism. I’m not sure if it’s necessary, but I feel the need to talk about the disorder further. spoilered for talk of ab*se, N*zis, .. .. .. .. .. .. .. .. .. .. .. I would like to share with you all a little something of the history of the study of Autism. Autism, as a separate "syndrome," did not exist until it was named so about 50+ years ago. I won’t go into the "wild child" years; those histories are sketchy at best. The most damage was done after WWII by the Bettelheimian "theory" of Autism. Bruno Bettelheim, a J*wish man, was imprisoned in Auschwitz and miraculously survived that n*ghtmare. The ho*rors he must have witnessed are almost unimaginable, even to those of us with t*rtured lives. After the camp was liberated, Bettelheim studied as a psychologist. As he was training to work with children, he observed children who seemed to "live in their own world," who had "retreated" from human contact. This all looked too familiar to him — he had seen his fellow camp prisoners behaving the same ways. The vacant stares, the complete lack of emotional expression, reminded Bettelheim of the survival reactions of those tormented by the N*zis, perfectly "normal" people put through intolerable p*in. There were surface similarities between the actions of the camp prisoners and the behaviors of those children. Where Bettelheim tragically erred was in assuming parallel causation: If the camp prisoners were br*talized and then acted "that way," then the children he was observing MUST have also been ab*sed and that’s what caused their "odd" behavior. But what if there were no other signs or evidence of abuse? And whose fault must it be? Bettelheim laid the blame for autism squarely at the feet of the "refrigerator mother," a parent so devoid of maternal feeling that the child could sense IN THE W*MB that s/he was unwanted. The mothers did not have to h*t the child; even before the child was born, negative "thoughts" would transmit to the ut*rus. Imagine the mother being told this about her child. How p*inful it must have been for those parents looking for answers about their child’s troubles, and being told it was her very thoughts of not wanting this child that caused the disorder. Supposedly we know better now. A wonderful man/scientist with an autistic son began a long struggle in the 60’s to overturn the predominant Bettelheimian approach to autism. Over the past 30+ years, the Autism Research Institute, under the direction of Bernard Rimland, has gone about collecting evidence, anecdotes, medical trials, and anything else that might help us understand this puzzle called autism. We now know that autism is a neurobiological disorder — hardware, not software problems. And they are problems. Autism moved into my house the day my first son was born in 1988, though we didn’t learn the border’s name until he was diagnosed in 1991, 2 weeks AFTER the birth of my second son. My husband and I both love these little guys intensely and try to enjoy what we can of their antics — and they can be a riot! But this is a disorder. When my second son was diagnosed in 1993, I felt my life slipping away. Believe it or not, the gh*st of Bettelheim still was ha*nting(u) when my children were being diagnosed, c. 1991-93. I actually had a social worker who tried to enlist my family doctor, my children’s psychiatrist, neurologist, even my pharmacist to assist her in "finding an alternate, out-of-home placement" for Nick, my oldest. "Obviously," he had an attachment disorder; "obviously," since he had not "bonded" with me and I was his birth mother, then "obviously" I had abused him and "obviously" he should be removed from my care. Let me be clear — there were NO signs of neglect or abuse on his body, in his home, or in any aspect of his care. We had care attendants in and out of our home constantly and the boys saw a doctor of one sort or another (they both had the common autistic seizure disorder as well) at least once each month. But the social worker was channeling the gh*st of Bettelheim. (Imagine what she would have done if my DID/MPD diagnosis had been made at that time!) For the longest time, I was afraid every time he went to school, because I thought he wouldn’t be coming home. I was lucky; I had established such a tight community of professionals that they viewed HER as the intruder, informed me, complained to her supervisor, and assured her that they would be a party to any legal action I might choose to take against her. When the plot came out, I had a new social worker by the end of business that day. As a J*w, I feel for Bettelheim. I have known and met quite a few Holocaust survivors and, unlike in the TV movies, some of them are real a**holes (as are some of the rest of us). But all of them have suffered unbelievable atrocities. It is not a general J*wish belief that one becomes a better person just because one has suffered. Bettelheim was one of the prime examples of the need for a physician to heal himself. He saw the surface similarities between Autistic children and those people being t*rtured by the N*zis (rocking, vacant stares, absence of communicative language, bizarre/r*tualistic movements/behaviors) and declared them "the same thing." I never had to wonder why Bettelheim leapt to the conclusions he did. I think he must have been trying to "rescue" those with whom he identified (or more accurately, projected onto). But in his attempt to save the children, he destroyed their families and the families of at least the next generation of Autistics. He was so damaged himself that he could only help them in ultimately destructive ways. If you are interested in this warped view of autism, read "The Empty Fortress." Just don’t BELIEVE it. I saw several copies of the book at Half-Price and I wanted to put up a sign that said "Read for Historical Purposes Only — Parents of Newly Diagnosed Autistic Children: RUN!" I’m sure you can imagine how hearing that their Autism was MY fault added to the general peace and tranquility that runs through MY mind. In one sense I was lucky. I was an ab*sed child who did not turn around and ab*se her own children. I know, from all external (and internal) evidence, that my children have not been mistreated in any way by me or anyone. But it was very easy for me to be accused of it because of the Bettelheimian connection between ab*se and autism. Autism is a disorder that is difficult to diagnose (and don’t we all know about that!), but all "autistic-like behaviors" do not point to "autism." Sorry to go on so long. I didn’t mean to insult or hurt anyone. I just know that it can become easy to use words that don’t seem loaded to us but can really cause other people problems. I’d be glad to talk to anyone about this if they’d like. Autism has been living with us for a long time; we don’t like it, but we’re learning to live with it. I only pr*y that we do the best we can for our children. All of us. Miriam.
Response:
There’s an excellent book written by the mother of two autistic children, "Let Me Hear Your Voice" by Catherine Maurice, in which she writes about the damage done by those who believe in the "refrigerator mother" and "rejection in the womb" theories of autism, and how she actually tried treatments based on those theories out of her desperation to help her children, before learning of the Lovaas behavioral method that has been proven to be more effective, and which worked exceptionally well with both of her kids. I’ve worked with autistc children and adults for a number of years, and this book helped me understand a lot more about what the families experience. Other good books written by parents of autistic kids are "Son-Rise" and "Every Loving Gift" by Barry Neil Kaufman, and "The Seige" by Clara Parker. The autobiographies by Temple Grandin and Donna WIlliams are also great. I also wanted to make a comment here on Bettelheim- if you read some of his case studies, it’s apparent that often the kids he called "autistic" were in fact not autistic but were abused, neglected, and emotionally disturbed, and he was using the wrong label- he had a lot of success treating these kids- the problem is that he was lumping them together with truly autistc children, but to give credit where it’s due, he did help a lot of kids (he just misdiagnosed the ones he helped, and didn’t help the ones he was calling by the right label). -Nancy
Response:
Thank you, DB. I’m probably just being too sensitive, and I appreciate your thoughts. You made me feel heard. thanks again. Miriam. – Hide quoted text — Show quoted text – Dear Miriam. Thanks for shedding history on the infameous "the B guy" as well as the study of autism. My mother unfortunately experienced some of Bettelheimian’s damaging theories which were accepted by my father. Big surprise there. My beloved sister, while difficult as a youngster, is the center of my heart and it hurts tremendously when well intentioned people pave a road to your personal hell. I hope the best for you and everyone in their struggles. Gotta go. (and meet with the lawyers.) D.B.
Response:
Dear Miriam. Thanks for shedding history on the infameous "the B guy" as well as the study of autism. My mother unfortunately experienced some of Bettelheimian’s damaging theories which were accepted by my father. Big surprise there. My beloved sister, while difficult as a youngster, is the center of my heart and it hurts tremendously when well intentioned people pave a road to your personal hell. I hope the best for you and everyone in their struggles. Gotta go. (and meet with the lawyers.) D.B.
Response:
Dear alc, You are so insightful — you said much better what I meant. All of us who have been abused can develop autistic-like coping skills (and that’s what I really think they are — skills!); a child is born with autism. I’m so sad for what you’ve been through. and you are absolutely right — true autism exists everywhere the child goes; I’ve never heard of a case of "situational autism." Of course, I’m sure I haven’t heard everything! I just wanted to thank you for your acknowledgement of my feelings and your understanding. I wish all good things for you. Miriam. – Hide quoted text — Show quoted text – Dear Miriam, We are sorry for everything you have had to go thru with people misunderstanding your sons’ autism and thinking it may have been somehow your fault. We believe you have been the best mum you could be to them. Thank you for telling us the history of the word, Autism. I have read with interest to the extent that my eyes would permit what you and others have posted here about Autism. Spoilered for my own early life experiences; 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 For so long I have been trying to understand my own childhood, where I sat and rocked for days at a time and stared into space and did not recognize any one only screamed hysterically when my m*ther would walk toward me. These moments, I am certain (both from my memories and what my family has told me) ~did~ follow traumatic instances. When I’ve tried to describe this to th*psts and other professionals they don’t seem to understand what I’m talking about. This has always puzzled me as I want so much to understand this and felt certain the professionals would. I have usually described it as a catatonic state as I have felt certain for a long time that it was not autism. (The only thing I knew about autism was that this was something these children seemed to have been born with. My firm belief was that I was not born with it whatever "it" was.) The matter began when I was 3 and lasted until I was 7 at which time I remember quite clearly discovering that I had this condition one day and making a strong effort to encode my mind with the command that I would never go to that state again. That~ from that moment on I would stay "awake" thru the most difficult moments of my life. It was at that moment that I began to be aware that my mind was programable, something that has been of help to me thru the years. (This was in Alabama in 1954 and it would be many years before I would hear about a computer and have a way to communicate this idea of telling your mind to do something to externals.) I am still trying to piece together those moments when I was "catatonic", what preceeded them, what it was really like during the "frozen" state, and how I came back out. I do remember the coming back segments the most clearly. In th*py I have been able to recall the "frozen" state to a certain extent. I have some foggy "this happened in a movie to a made up person" images of the moments prior to the "frozen" state. Somehow, reclaiming this portion of my life, as difficult as the work has been, has been very healing for me and has brought a peacefulness that I wouldn’t trade. The part that has had the most restorative effect on me has been remembering what it was like for me personally during the frozen-state. It is as if I have had returned to me a portion of my life that had been taken away from me. I feel such comfort holding to me those memories about those moments. The moments prior to the frozen state have been simple healings. Not that they were simple to do or experience but they have gone the way other mental healings have for me. They have simply healed (after much work and far more time than I would have wanted to afford them), healed with scar tissue but healed in ways that will never cause me the anguish it once did. The "coming back" moments have given me courage to try as an adult to connect with life and other human beings. I don’t know how I got onto this except that when I read the statements you wrote; he had seen his fellow camp prisoners behaving the same ways. The vacant stares, the complete lack of emotional expression, <snip those people being t*rtured by the N*zis (rocking, vacant stares, absence of communicative language, bizarre/r*tualistic
movements/behaviors) – Hide quoted text — Show quoted text -We were reminded of our own early life and felt some peace knowing that big people have had this associated with them in PTSD. We wish the professionals could help people understand this about their lives. We also wish there was a way to dx this in children so that children who ~are~ in abusive situations could be helped. These occurrances did not occur outside my home except in one instance with a teacher. Yet it was so common in my home that the other children in the neighborhood knew this about me and on the one occassion it happened at school my classmate knew exactly what to do to take care of me. If I had been autistic I would have been autistic at school and at other children"s homes just as much as I was in my own home I would think. I do appreciate those at ASD for letting me share this. alc
Response:
Dear Miriam, We are sorry for everything you have had to go thru with people misunderstanding your sons’ autism and thinking it may have been somehow your fault. We believe you have been the best mum you could be to them. Thank you for telling us the history of the word, Autism. I have read with interest to the extent that my eyes would permit what you and others have posted here about Autism. Spoilered for my own early life experiences; 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 For so long I have been trying to understand my own childhood, where I sat and rocked for days at a time and stared into space and did not recognize any one only screamed hysterically when my m*ther would walk toward me. These moments, I am certain (both from my memories and what my family has told me) ~did~ follow traumatic instances. When I’ve tried to describe this to th*psts and other professionals they don’t seem to understand what I’m talking about. This has always puzzled me as I want so much to understand this and felt certain the professionals would. I have usually described it as a catatonic state as I have felt certain for a long time that it was not autism. (The only thing I knew about autism was that this was something these children seemed to have been born with. My firm belief was that I was not born with it whatever "it" was.) The matter began when I was 3 and lasted until I was 7 at which time I remember quite clearly discovering that I had this condition one day and making a strong effort to encode my mind with the command that I would never go to that state again. That~ from that moment on I would stay "awake" thru the most difficult moments of my life. It was at that moment that I began to be aware that my mind was programable, something that has been of help to me thru the years. (This was in Alabama in 1954 and it would be many years before I would hear about a computer and have a way to communicate this idea of telling your mind to do something to externals.) I am still trying to piece together those moments when I was "catatonic", what preceeded them, what it was really like during the "frozen" state, and how I came back out. I do remember the coming back segments the most clearly. In th*py I have been able to recall the "frozen" state to a certain extent. I have some foggy "this happened in a movie to a made up person" images of the moments prior to the "frozen" state. Somehow, reclaiming this portion of my life, as difficult as the work has been, has been very healing for me and has brought a peacefulness that I wouldn’t trade. The part that has had the most restorative effect on me has been remembering what it was like for me personally during the frozen-state. It is as if I have had returned to me a portion of my life that had been taken away from me. I feel such comfort holding to me those memories about those moments. The moments prior to the frozen state have been simple healings. Not that they were simple to do or experience but they have gone the way other mental healings have for me. They have simply healed (after much work and far more time than I would have wanted to afford them), healed with scar tissue but healed in ways that will never cause me the anguish it once did. The "coming back" moments have given me courage to try as an adult to connect with life and other human beings. I don’t know how I got onto this except that when I read the statements you wrote; he had seen his fellow camp prisoners behaving the same ways. The vacant stares, the complete lack of emotional expression,
<snip those people being t*rtured by the N*zis (rocking, vacant stares, absence of communicative language, bizarre/r*tualistic movements/behaviors)
We were reminded of our own early life and felt some peace knowing that big people have had this associated with them in PTSD. We wish the professionals could help people understand this about their lives. We also wish there was a way to dx this in children so that children who ~are~ in abusive situations could be helped. These occurrances did not occur outside my home except in one instance with a teacher. Yet it was so common in my home that the other children in the neighborhood knew this about me and on the one occassion it happened at school my classmate knew exactly what to do to take care of me. If I had been autistic I would have been autistic at school and at other children"s homes just as much as I was in my own home I would think. I do appreciate those at ASD for letting me share this. alc
Response:
There has been a lot of talk about "autism" on asd of late, and I feel somewhat responsible for touching off so much in so many by mentioning that my sons both have autism.
It’s a topic we turn to from time to time. I wouldn’t say you’re responsible as much as you just reminded people of it. (major snip) Autism is a disorder that is difficult to diagnose (and don’t we all know about that!), but all "autistic-like behaviors" do not point to "autism." Sorry to go on so long. I didn’t mean to insult or hurt anyone.
I don’t feel hurt or insulted. I’m wondering if you do? Or offended, maybe, that we are calling our "autistic-like behaviors" autism? Just asking, because I’m really not clear what these last couple of paragraphs, and that sentence in particular, mean. Are you saying that the word autism might not seem loaded to us but the way we’re using it is causing you problems? Not intending any sort of challenge here, just trying to clarify. Tess I just know that it can become easy to use words that don’t seem loaded to us but can really cause other people problems. I’d be glad to talk to anyone about this if they’d like. Autism has been living with us for a long time; we don’t like it, but we’re learning to live with it. I only pr*y that we do the best we can for our children. All of us. Miriam.
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