Autism and "Refrigerator Mothers"
Friday August 11, 2006
Not so long ago, "cold, uncaring" mothers were blamed for their children's autism. Today, while we understand that that idea was wrong-headed, we are still placing blame on parents. If the cause of autism is purely genetic, then it comes directly through mom or dad's DNA. If the cause is environmental, then parents are to blame for vaccinating their children or exposing them to the wrong surroundings. If the cause is both... well, you get the picture.
Perhaps even worse, we are placing the onus on parents to figure out how to treat or "cure" their children with autism. In a vacuum of reliable information, we expect ordinary moms and dads to sort through the research and make appropriate medical and therapeutic decisions. And then -- in many cases -- mom and dad are expected to actually become therapists themselves!
Have a look at the story of refrigerator mothers -- and share your own experiences here!
Comments
My Mom will be the first to tell you I was not the easiest kid to raise and now at 43 and looking back in the rear view mirrior she might have done the impossible. Lots of our Anthropology’s mother’s have a similar odd story to tell and it generally isn’t a story of behavior issues ,it is the lack of respone from us, the odd ways we did stuff the pure shock of one day we simply did something that we didn’t the week before, all making Motherhood a strange experience. As we discuss the state of the autism union Mom is so thankful we missed most of the new fun and at the same time she thinks there is OVERLOAD in the other direction as there is so much Autism to digest all of a sudden.
On another note there is a definate number of people in our anthropology that also have a “Looped Parent”. It can be the Mother or the Father (and sometimes a brother or sister) that might be narcissistic or are somehow hinderd in mental function. Many of us care and babysit for this person today.
Autism Parenting is a bigger challenge today than it ever was, My heart goes out to all of you. Rich shull
Parents of Autistic children may seem “colder” on the outside but it may be due to learning to adapt to that child who is no longer an “emotional” type child. A child that doesn’t want to see the many faces of emotions. We have to keep our calm at all times. Remain an even emotion…that doesn’t make a person cold, rather the 24 hour therapist & caregiver we have to become.
I am a mum of three boys,ages almost 4,2&1. my eldest son was diognosed with ASD at the age of 22mths. My baby never slept,was always hungry,never wanted to be held,he never gooed or babbled any babytalk at all the only noise he made was to scream. As he got older he would constantly be in his own world and he played differently to other kids,everything had an order and everything had to be in a line! Conor slept though the night for the first time at 21/2. We have been working very hard with theripists since. Our doctors and theripists all believed that he may only ever communicate by screaming.
Trying to stay positive with such a bleak future ahead is hard….to say the least!
when your days consist of constant screaming,repetative behavoiur and tantrums you soon learn how to tell by the scream if you have to do something or if it is just built up frustration(much to the horror of onlookers)
I don’t think of my son as “different”
so I never really told anyone that he was autistic. After being told I was a bad mum and a cold hearted bi**h for almost a year I became fed up with people judging my son and my parenting skills, so I put it to the worst offenders to spend a day or two in my shoes …….not one of them lasted more than 2hrs!……..But persistance does pay off!! on Conor’s 3rd bithday he spoke for the first time! not 1 but 2 words!…..MUM! TRAIN!….(referring to his birthday cake that I had spent the whole night making!) A week or so later he showed affection for the first time- my little boy gave his Mummy her first willing hug! Since then we have discovered just how clever my baby is,he can now hold a convesation,say his abc’s,count to 50 unassisted (backwards as well)he knows his colours and shapes and bodyparts. Toilet training has been our biggest hurdle! I recently went away for a weekend so the boys were with their Dad! when I got home my big boy was going to the toilet!!!!and has continued to since! NO ACCIDENTS at all! It is hard to cope with one child that has ASD-I have two others kids as well!
I am a 24 year old Mum of three-NOT superwoman every parent in my position learns how to cope,some how! If more people understand what it is like for our kids (their siblings and us) the easier it is to get on with it and be positive!
Congrulations Natale, and to the thousands of other autism parents in the worldwide spectrum of autism. It is simply amazing you have been able to get anything done and even make progress. If we were to compaire our apples to oranges autism experienceies of our autism anthropology to the experience of the modern autism folks it might be pretty obvious quite a bit of what goes on in modern is absently self-inflicted. Autism really is not all that complicated it is simply a different form of human thought that has never been in a text book before. Sadly early autism operates too many levels below traditional thoughts and we come off as smart as a sack of rocks. For some of us if our splinter skills shine threw we might get a ‘rain man’ image if we are lucky. If we are really lucky we self-discover our Thought process and learn how to make it work for us. If we do that we also learn eventually how to translate Autism thoughts (lack of eye contact, invisable thoughts) to traditional words and do a normal life, like our group of better preforming Temple Grandin’s do.
In this big mess called autism there are lots of ‘experts’ and some have good ideas but unless you actually have been there and done that like we have no expert realizes their ideas are often times much more work than help. If Autism would allow our stories to be told and those of our parents and teachers they would be shocked to see what worked while we were growing up. It doesn’t resemble modern Autism education or standards at all. They would also cringe when they meet some modern Aspies that also connect to us.
It is too bad Rain Man the great movie ,in effect made autism a designer condition ,buzzword and now a bigger problem than it ever had to be. If our story ever gets told and our books ever get published we will unintentinally delfate the autism empire and explain a different kind of human thought process that explains everything from Einstein to Dyslexia ,as well as, autism. Meanwhile Autism powers hold the upper hand and control their very own future and will not allow a group of the very ‘retards’ they are researching to be admitted to. Technically we can’t possibly exist anyway as most of modern Autism folks do very little and live in a group home- that is all we are expected to do! The way modern Autism has done things we are lucky to even do that. We are either bad for business of autism or bad for a few egos or perhaps both.
Sincerely Rich Shull , Author Autism Pre Rain Man Autism -built on Temple’s Thinking in Pictures
A few thoughts on Emotions and autism.
Here is my take on this,
Our anthropology does indeed prove we can function pretty normally and today Emotional thinking and even hugs are tolerable, but ONLY after we have figured out our most advanced autism thoughts.
Early Autism thoughts if we even realize what they are and espcially if we do realize our invisable to you thought process we call autism is often too busy figuring out how to keep up with something to even bother with the added bit of emotional baggage. It seems when a traditional person thinks the words come out and you listen and look at person to get the meaning of the conversation- and it works. You are programmed that way. It appears to an easy process and no one realizes what we are doing figuring out our autism thoughts is doing something many steps below what you think we do or should be able to do. The lights are on but no one is home when it comes to emotions.
Once our proficinet picture thoughts are working we CAN and DO keep track of body language and even participiate in the emotional game people do all the time. This is the stuff many levels above what Temple spoke of and it has never been in a book before.
We need to learn and do our basic thoughts which are your basic thoughts in very SLOW MOTION and in bite size format, then we can advance our thoughts and nearly mimic traditional thought and when we do even emotional things that make life interesting are included in our real life.
I know hugs and eye contact would be GREAT as well as a few understandable jokes but it will never happen untill autism allows us to learn our core thoughts again and when it does or simply allows our anthropology to be introduced people will see how we do the impossible, everyday.
Rich
I have a son with autism who is age 32. I also have a son, age 30, diagnosed with ADHD/LD but sometimes I wonder if he isn’t an Asperger as well.
So my life has not been easy at all. My older son was driving my younger son into a mental health quagmire when they were like middle school age and I had to get the son with autism out of the house in order to get the mental health of my younger son back in order.
Still today I find the attitude of refrigerator mother towards me from those with younger children with autism who feel that I must have done something wrong because my son with autism isn’t cured yet. They also want those with adults to mix with them and tell them what we did wrong.
When we want our own adult support group they are angry because they want to know what is happening in our adult world and want us to be at their meetings where they talk about school and circle of friends and really don’t want to hear our issues. With no adult services what can we tell them about the wonderful world they will face some day? When they finally get to our place things will have changed.
Those critical younger parents need to realize that the information and services they take for granted were not there at all when our older children needed them.
I have a 30 yo son who was not diagnosed with Autism until he was 19. His story begins with his infancy when he would never sleep, but lie in his crib and bump his head, all the while chanting. I make an audio tape of this and brought it to his pediatrician. I have two older girls, and this was very abnormal to me. His theory was that we should not worry about it, he would outgrow it. Well, he now bangs his head very hard on his bed, while listening to music through earphones. This seems to unwind him and recharge his batteries.
All though his younger years, he could never play sports as he was fearful of a ball coming at him. He always had communication problems as well as comprehension problems. The school always blamed it on me, saying I babied him too much. He could never write paragraphs that made sense or do book reports. There is a lot more to it than that, as I am sure you all know. At 15, I took him in for a neurological evaluation, and was told he was on the fence of being autistic, but he was too high functioning to diagnose him as such. The neurologist recommended he take a foreign language as he would do very well. My comment was that he can’t do well in English, how could he master a foreign language? She was right — he had the highest grade in two years of Spanish class.
To continue, he then was again evaluated at 19 (after high school) by the same person, and then he was diagnosed with autism. Except for one teach in high school who mentioned Asperger’s Syndrome, only the psychologist whom he saw all through high school mentioned that he was sure Jason had Asperger’s Syndrome. Until I studied up on it on my own, I did not even know what it was. But now, I am sure that’s it.
Well, today, Jason is 30, has a 10yo out of wedlock daughter (whom I am raising) and is holding down a job as a hotel desk clerk. So far so good, but he still relies on me a lot. As far as his relationship with his daughter goes, he could care less that he has her. He just does not get close to anyone — she came along as the result of a girl whose parents let him sleep at their home with their 16 yo daughter. My granddaughter is the love of my life and I am so blessed to have her. She’s a great kid.
Anyway, things in our case seemed to get slightly better as he got older, but I am sure it is because he is very high functioning. To speak with him is like speaking to a 12 yo, as his vocabulary is very poor, his speech is poor, and he does not understand so many things. Reading is too much of a challenge for him, as he does not understand most of what he reads, so I have a lot of interpretation and explaining to do for him.
I just wanted to let you all know that there are so many of us with adult ASD children. I, too, used to attend the Autism meetings, but could get no resolution to Jason’s problems. I quit going many years ago, and just home he can make it through the rest of his life ok when I am gone.
He is moving into an apartment this week, but I do not plan to help him with any of his expenses. He has to learn to make it on his own, or move back home.
I am the mother of a child with not only Autism but Down Syndrome. Get a dual dx for a child already labeled Ds is nearly impossible.The Dr. kept telling me that lots of kids with DS act like my son. He rocks, is non-verbal, self abbusive,and stops, drops, and flops in the floor if he does not want to do what you are trying to make him do.I have read the earliest intervention is very important for these kids to succeed. But you have to get a Dr. to believe y ou first. We have to speak for the child that cannot speak for themselfs. Cyndi Burns
Standing Ovation to you Mothers.
When my son was enrolled in Early Intervention which did not help. The School closed due to some violations committed. Anyway the only good thing was that I had the opportunity to meet with mothers of children with autism and let me tell you that we are the best people. We love our children and we make the impossible to make them happy and productive. Cheers!
to Martha Moyer. thank you for your comments on adult autistics. my son is 50 so we go way back to the refrigerator mothers era.
june francis