Raising Children with Autism, Before the "Epidemic"

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I went to school (Michigan) from 1969-1982.

Special education was for deaf, blind, "physically handicapped-but normal intelligence", and Downs Syndrome. If you had seizures or were a general PITA, you were shunted off to "mentally ret*d" school until you dropped out at 16. Those schools were just holding pens to give the parents an 8 hour break. I don't think much was done except train you enough not to melt down during sheltered workshop work.

We had a huge state children's psych hospital near by. It was a dumping ground most likely for kids with ADHD, ODD, brain damage and autisim. My old psychiatrist did a fellowship there, and he said there was a good chunk of autistic children present.

If the kid with autism did stuff to make family life miserable (insert behavior here), the doctors told the parents to cut their losses. They have 6 kids plus this one making life a "living hell". Better let the state tend to him/her then have this one kid tank the whole family.

Looking back, there are probably 4 school mates that wound up in that state hospital. My neighborhood was not filled with doctors, lawyers and teachers. Most worked for car companies, and at best had a high school education. Back then, churches viewed ASD as something the family brought on themselves. You sinned and God gave you this kid. It was for you to deal with suffering, and through this suffering bringing you closer to Christ.

The whole family would be treated like they had the plague if they had an Aspie. I'm not talking really low kids with helmets. If your kid walked on tip toes or stimmed, people would actively avoid your whole family. Like get up and leave the restaurant in the middle of dinner.

People who did get help in the 1970s either had some decent medical university connections, money or both. I'm sure University of Michigan might of diagnosed autism in the 1970s, but noone in my neighborhood had the time or money to do that.

I remember trying to do a research paper on autism in 1982. My small liberal arts college had ZERO books on that or Aspergers. Crickets. The pickings weren't much better at the medical library down the street.

As an Aspie in the 1970s, you either adapted, passed or got shunted off to the psych ward to rot. The more issues and behaviors, the harder the parents were pushed to let the state handle it.

As you and many others here know the historical attitudes towards autism in the USA are very well documented in the Autism history books "Neurortribes" and "In A Different Key". The forget you ever knew them near-universal recommendation was documented in both books as well as Autistics being subject to drug experiments in those institutions, most of whom were nothing remotely as nice as the one portrayed in "Rain Man".

This is where the "there were no autistics when I was growing up" statement I read all the time comes from. They either did not see them because they were institutionalized or we muddled through undiagnosed therefore unrecognized. Completly different then compared to now is talking about personal problems, no blogs or youtube videos etc. You were expected to just deal with it and not burden others with your "s**t" especially for guys. If you could not do that and needed to see a professional that was a stigma, a shame on the family, considered "nobody's business". I could have probably been diagnosed 15 years earlier but looking into oneself was in my view an unmanly thing.

Last edited by ASPartOfMe on 15 Nov 2017, 9:54 pm, edited 2 times in total.

I imagine that is why she was able to find any special school, never mind a humane one.

Unfortunately this is still the implicit understanding today. It's just no one talks about it in the open. No one dares to poke at the hornets' nest. People put up a facade. It's a nudge nudge wink wink thing. Sad.

- - -

But facades exist everywhere. Perhaps you can call people coward, or you can call them practical.

From the opposite side, you will see some autism experts avoiding touching the subject of "low-functioning autism." In this case, the facade is on the other side. I am just as guilty. I have given a talk on child autism, where I presented a PowerPoint slide on "low-functioning autism." It was a blank slide. That was how much I'd ever talk about low-functioning autism. Similarly, when people start discussing prescription drugs for mental disorders, I just shut up and walk away. Again, it's a nudge nudge wink wink thing. Let's just admit it: there are two worlds. But as humans, we learn to co-exist.

Politics is the art of compromises. Sometimes you just weigh in cost vs. benefit, and settle for practical solutions. These solutions are not ideal, but tolerable. After all, we do care about all human beings, no matter whether they are parents, teachers, psychologists, therapists, or children. We cannot solve all the problems today, but we can steer our society in the right direction, so that children from future generations won't have to suffer. My view always is: we are the last few generations of human beings, so we might as well be nice towards each other. Sure, this means a few more millions of lives will be wasted. But in the big scheme of things, that may well turn out to be the best we can do. And sometimes I just think that that's the way Mother Nature has chosen in the past, anyway. So forgive me if I don't have tears.

I was often sent for small purchases, one grocery-woman would always be unpleasant, the bakerwoman was not fun neither, the son of the grocery later would play with my brother and then we came to play with his sister too, a victim of what was that again? softenon, with the hands on the shoulders and a huge head - that explained the unpleasantness!

My mother worked at a school for 'ret*d'(downsyndrome and other) children before her marriage, in the 50s,
i heard often how sweet and fun these children where, they were thought what could be thought and there was none of the nasty things, maybe or surely, in institutions though
In the seventies we did, mother and others ofcourse, a 'ludic' week of protest against electroshock and restraint in psychiatry, i did the posters as i was quite good with the big-sixties letters.

I do not think its ok to paint the past as all wrong,
but there's a thing that certain people are attracted to working with "challenged persons" for unsuited reasons, or the position of percieved power brings out possibilities unimagined and unimaginable.

While DS children are not all sweetness and roses (they are human and can have meltdowns/moods/hard to handle behaviors), my social worker friend says as soon a a young DS infant/child is declared adoptable by the state, there is a minimum of 6 homes she can pick from. Boy or girl, doesn't matter. DS kids do not rot in foster care.

She has had infants that needed major medical support. Tube feedings, vents, terminal genetic diseases. Those children are a little harder to place, but eventually they will find a forever family in about a year.

Her ASD kids just age out. When a younger child hit's her case load, her heart dies. She has to quadruple the effort to find homes, and its a a hard sell. 8 and under is a bit easier, than 9 to 17 years old.

Special education in my area didn't include kids with seizure disorders/brain injuries or autism. So a teacher in the 1950-1970s would have a class of children with Down Syndrome, cerebral palsy, spina bifida, physically handicapped (wheelchair, crutches, some sort of mobility device). My teacher friends who taught sped back then LOVED IT. Children with Down Syndrome have the rep of being delightful. Noone goes FML when they see a child with that diagnosis on their classroom roster. You have no clue how many teachers go FML when they find out they'll have a kid with ADHD/ASD/ODD now.

Most sped kids back then were NT. My teacher friends say teaching a child with Down Syndrome social expectations is nothing like an ASD child. With the child with ASD you start at ground zero. The child with Down Syndrome may be at 50% already
there before you start working with them.

I've heard teachers longing for the days of old school sped classes filled with DS kids and minor birth trauma injuries. That is a different deal than an Autism Intervention classes my school district runs. It's considered special education, but there are always positions to be filled.

My parents were told in the 1980's I would also be in an institution and they were told by everyone I would never learn to talk and they didn't listen. Lot of parents get told that their kids with disabilities will never do this or that and that is very sad. My husband says it's because they don't want parents to get their hopes up if their kid fails but I believe some parents will be gullible enough to listen to the "experts" and give up on their child.

My school tried to throw me in a behavior class when I was in 6th grade, I was put in a self contained classroom when I was six because they thought I wouldn't be able to function in a normal classroom setting. In high school, teachers tried to give me limitations for my career and tried to keep me from taking drama or driver's ed. All they saw was my disability and made assumptions about it. I think even without a autism diagnoses, it still would have happened because my husband went through it too and he doesn't even have a autism diagnoses.

My husband was also thrown in self contained classes and kept isolated from the other kids and that affected him.

It's fortunate I grew up in times where special needs kids had a right to an education too and we had the IEP back then too but back when I was real little until the early 90's they still separated normal and kids with disabilities and then inclusion came out so I went to normal class for PE, Music, and Library and that was how my school did it then but that wasn't enough for me. But they did have a law back then that for a kid to be in a regular classroom, they had to prove the kid belonged in the self contained classroom so my mom used that law to force them to test me and I passed and was able to attend regular class with other kids full time. This was the early 90's. My husband is ten years older than me so he wasn't that lucky and his parents didn't know how to advocate for him or where to go for support so they left it all up to the system. I know it was possible even in the 1980's for a kid with a disability to be in a regular class because one of my online friends with autism was in one of those self contained classrooms and his mom got him out in the mid 1980's and put him in a regular class. His mom was also a former teacher so that could be why because she knew the laws and used it to advocate for her son.

I remember when I was going into high school, my old best friend who had Down's syndrome, her parents also struggled with her education in junior high. I don't remember the details. I just couldn't believe they would try and deny her rights and this was in the late 90's and early 2000.


What does FML stand for?

FML=F*ck My Life

I spent the bulk of my school-age years in 1990's. That was at the very beginning of the autism "epidemic", when the word "autism" still evoked horrified gasps, rather than annoyed groans.

Some of my teachers, especially in late elementary school and middle school, kept telling my parents that I will become a scientist. Unfortunately, my parents took it as a license to push me for nothing but the best grades at all times. To the point where a C on a report card resulted in hours of screaming and berating, followed by loss of TV "privileges" for two weeks. And a D on one lousy homework assignment resulted in my parents crying and slamming things for hours on end. The pressure to maintain perfect academic performance at all times was so bad, that I used to develop a fever pretty much every time a bad report card was supposed to come.

Other teachers adopted a more progressive stance. They emphasized my social popularity (or lack thereof) in their class over my academic performance. Sure, they mentioned my grades, but very tangentially. If I were to run into these teachers today, I'd shake their hand and thank them for putting up with my aspie antics.

The scientist prophecy never came true. Instead, I had office jobs so stressful, that I was chugging vodka straight out the bottle every night, smoking nearly a whole pack per day, and stuffing McDonald's down my throat, just to feel some relaxation. Needless to say, my health suffered; I even had to go to the hospital. Today, my job isn't easy, but tolerable, and my health is better. If I run into any of my teachers who tooted the "science" horn, I'll do something to them so horrible, that I'll get arrested on a misdemeanor charge.

I grew up in the 80s and 90s, literally RIGHT before "the epidemic." I know my folks (parents and grandparents) suffered a lot of s**t from people complaining that they spoiled me. As it turns out, I guess they got their vindication; all of them but my mother lived long enough to hear about the autism diagnosis and to hear me tell them that, somehow, without knowing what they were doing, between them, they did everything "right."

I was lucky though. The fever for institutionalizing and isolating kids had pretty much died down. I was just "bright, but spoiled." "Smart, but weird." If they had had to put up with that s**t, my mother would have gotten angry. For the few years she was able to work, she was a home health nurse for kids with terminal conditions; I remember her being frequently angry about the attention "her kids" didn't get. She gave up a lot of weekends to make sure they got that attention, and that their parents got taught the things they needed to know to empower them to let their kids live as much life as they could and die at home. Daddy would have got down about it, smoked a joint, laughed it off, got back to raising his kid (pretty much what he did anyway, every time teachers called him up worried because I still sucked my thumb and cried a lot in junior high, or read things that were too mature, or whatever). Grandma would have had conniption fits about "backwards idiots" and "West Virginia is always 30 years behind the times" and got on with raising the kid.

I know my grandmother had a HELL of a time raising my aunt, back in the 50s and 60s. I didn't hear much about it until after Grandma died. All she ever said was that Grandpa's family was very unkind about the child (his daughter from a previous marriage), and her take on it was, "I just thought, well, what did they expect?! Her mother abandoned her when she was EIGHTEEN MONTHS OLD! She needed some LOVE! She needed a MOTHER! I worked with her; it turned out OK." Come to find out, Grandma inherited a violent, non-verbal four-year-old in diapers. I guess it DID turn out OK. Somehow, she pulled a Temple Grandin with my aunt. She had no clue what she was doing. No training. Nothing. She had a high-school diploma and ten years of work as a factory worker and a bookkeeper. She had a mother that loved her until she was eight; then she had an abusive stepmother. She knew not to do THAT, she liked kids, she had a lot of patience. You can tell SOMETHING is wrong with my aunt. She can't make eye contact (can't even look at you and carry a conversation). She has to repeat what you're saying to process it. She has one friend, she never had an emotional connection with her kids, she married a man from India and gets on much better with his family. But, you know, she's functional. She's been married for 45 years. She held a job. Her kids turned out OK. I guess believing in somebody, and love and patience and teaching, can work miracles.

I dimly remember being very small, 3-6 years old. Grandma worked very hard to make sure I had friends, worked at teaching me to take turns and how to interact with people. How to be someone that people would want to be friends with, to go along with what other people wanted to do. How to go to the store and interact with the cashier, the butcher, the lady at the deli, the lady at the fruit stand (and God, her name was Rosemary, and she was A COMPLETE b***h...) I remember her taking me to the public library (the doctor told her there was nothing wrong with me, "She very smart!! Take her to library!!) and making special arrangements so I could use the elementary school library before kindergarten. I remember her taking me to the playground and spending a great deal of time holding my hand, walking the balance beam with me over and over and over, teaching me to walk with my feet flat instead of on my toes (the only sharp thing I ever remember her saying about my autistic ways was about hand-flapping and toe-walking, those things scared her and she would snap, "Do you want people to think you're ret*d?!" and honestly having had to fight people that wanted to institutionalize her stepdaughter and growing up and becoming an adult at the height of the 20th century eugenics movement I UNDERSTAND WHY!!), teaching me to balance without falling over, teaching me to jump rope with incredible patience (now I realize that was physical therapy for motor coordination issues)...

I guess it was bad, but... I feel like they taught me to be more qualified to raise my kids than a lot of the professionals. I'm reluctant to let the professionals get their hands on my kids, even though two of them do have issues (DS10 has ADHD, I gather pretty mild, because I have never let anyone get their grimy paws on him and never medicated, just read a lot and adapted what my folks taught me and spent a lot of time talking to Hubby who realized he had it when DS got diagnosed, and he's doing OK; DD5 has some kind of speech issue, pretty sure it's apraxia but haven't gotten a formal diagnosis, she's improving as well as a speech therapist would ask for, the older she gets the more I suspect that she's the only one out of my four to get The Curse but you know, I'm not really worried...)