Raising Children with Autism, Before the "Epidemic"

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ASPartOfMe
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13 Nov 2017, 4:51 pm

Marina Sarris Interactive Autism Network at Kennedy Krieger Institute

Quote:
Marilyn Cox was at work when the telephone rang. Her son's elementary school was summoning her, right away. When she arrived, school employees met her at the door and escorted her to the principal's office. There, two doctors were waiting. Unbeknownst to her, they had examined her 5-year-old son, Brian.

Brian had just started school, already knowing how to read, do arithmetic, and even speak a little Spanish he learned from Sesame Street. These doctors told her Brian didn't belong there. Not in an ordinary kindergarten class, in an ordinary public school, in their corner of Missouri.

"'We recommend you put him in an institution and forget he was ever born,'" they told her. Her voice, with the steady and even vowel tones of the American Midwest, wavers slightly at the memory. "I said some bad things, turned, and slammed the door."

This was life in the 1970s, for a child with autism. U.S. law had only begun requiring all schools to educate students with disabilities. State-run institutions – large facilities where people with disabilities lived – still existed for children who were traveling a different developmental path to adulthood. Autism was a strange and foreign word to most doctors and teachers; it was sometimes confused with mental retardation, emotional disturbance, or childhood schizophrenia, to use the terms of that time.

In fact, Brian, born in 1971, would not be formally diagnosed with autism for another decade. Many of his generation, born before diagnoses began skyrocketing in the 1990s, lived largely in the shadows of educational, health care, and social systems that were not attuned to their needs. They and their parents trod lonely journeys, but their footprints paved the way for the many who would follow in the 21st Century.

Brian was Marilyn's fourth child, and by the toddler years, she knew that his speech and social skills were not as developed as they should be. But his doctor, the same one who delivered him, was not particularly concerned. "He said, 'He's just got siblings 'round who do what he wants them to do.'" Brian was just being lazy, in other words.

Around the time Brian was ready to start school, his family moved to a different part of Missouri and Mrs. Cox took him to a new pediatrician. "By that time, Brian was talking quite a bit and reading all the posters on the doctor's wall. The doctor asked me if I had any concerns, and I told him I had."

After examining Brian, the doctor mentioned a word Mrs. Cox had never heard before – autism. It wasn't a diagnosis, just a word thrown out, almost discarded. Mrs. Cox asked for more information, but the doctor had none to give. Go find a book about it, he offered. "Where?" she asked. "He said, 'I don't know.'" That was the end of their autism conversation.

As surprising as that may be, it may have been typical for that time, and that place. Autism was a difficult diagnosis to get, even if you could find a doctor trained in identifying the rare condition. Autism was first described only 28 years before Brian's birth, by child psychiatrist Leo Kanner in Baltimore. According to the book Autism Frontiers, "In the 1970s, the diagnosis of autism had to be proved beyond a reasonable doubt. Children with the diagnosis of autism had to meet the criteria of Kanner and be significantly impaired. Occasionally a child would receive the diagnosis of mental retardation and 'autistic features.' The operational diagnosis, however, was mental retardation."1 (Interestingly, Dr. Kanner did not insist on the presence of "mental retardation," now called intellectual disability. In fact, he stated that his patients with autism were "endowed with good cognitive potentialities."2)

Some time after that doctor's appointment, Mrs. Cox would get that terrible call summoning her to the principal's office, and she would hear about institutionalization. By and large, America began the decades-long process of de-institutionalizing people with disabilities in the 1970s.3 But in many places, including Missouri, children were still being sent to such places. Mrs. Cox would reject that suggestion, and insist on having her son educated in his local school. But his "special" education was anything but, by today's standards. Brian received no occupational therapy, no social skills training, and no behavioral therapy. There were no activity schedules or social stories to reduce anxiety about the unexpected or prevent a meltdown from stress.

Brian tried his best to take part in class despite a lack of support and understanding. If a classmate told him his birthday, Brian would tell him the day of the week he was born. Yet his savant-like calendar skills, memory, and reading ability did not win over his teachers. He had trouble conforming: staying quiet, still, and seated. The school's solution was to stick him in the corner, behind a partition, literally out of sight. This may seem shocking today, but the ink on the 1975 law requiring the education of "All Handicapped Children" was still wet when Brian began school. "Parents were afraid to rock the boat," she recalled.

Still, Mrs. Cox pushed to get a semblance of a special education plan drafted and followed. "It was a fight all the way through, especially elementary school. Junior High was a little better." At least he was treated with kindness in his classes for the "developmentally handicapped," as they were called. By the time he was in high school, Mrs. Cox was contacted by a doctor who had heard about Brian, and whose own son had a disability. He told her about a psychologist in Illinois, and she took Brian there two or three times a week, driving more than an hour each way.

The psychologist wanted Brian tested for autism, but he had not been trained to do so. He sent Brian to the Menninger Foundation, a psychiatry practice in Topeka, Kansas. There, Brian was formally diagnosed with autism. He was 16.

By this time, in the 1980s, the definition of autism had become less rigid, although it was still stricter than it is today. Autism was believed to affect only 1 in 10,000 people,4 and most Americans had never heard of it. The year of Brian's diagnosis, American psychiatrists updated their diagnostic manual to include "atypical autism" or Pervasive Developmental Disorder Not Otherwise Specified, for people who didn't quite meet autism's stricter criteria.3

For the Cox family, "the diagnosis gave us a lot of insight into what was going on with him," Mrs. Cox said. But it didn't change much else. It did not help Brian get a high school education better suited to his needs, not even when his psychologist attended school meetings. He and his family still experienced some social isolation, at school events and church, where Brian's behavior was misunderstood. For a time, Brian was even barred from riding the school bus. Mrs. Cox was not given a reason, and she drove him every day.

The day before his high school graduation in 1989, she got another call from the school, this one as shocking as the first one a dozen years before. Although Brian had earned a diploma, bought a class ring, and picked up his cap and gown, the school did not want him to walk across the stage at the graduation ceremony. Mrs. Cox told the school firmly, as firmly as she did the day those doctors told her institutionalize Brian, "He will be there, and he will walk." And he did.

James Sweetney arrived with much anticipation in 1980. His older brother had died of Sudden Infant Death Syndrome, and his parents watched James with great vigilance. He was talking in phrases, such as "Jimmy eat!", but at 18 months, he suffered a high fever, one of many infections.

"When the fever broke, I thought he was deaf because he had stopped talking," recalled his mother, Jacqueline Sweetney, of Maryland. She watched as her son lost eye contact and pulled more deeply into himself. Instead of exploring his world, he rarely moved. At first James' doctor told her not to worry; James would talk again, he said. But he never did, and his family's concerns multiplied.

When he was three, Mrs. Sweetney took him to a children's hospital, where he was diagnosed with autism and intellectual disability. "They decided he needed medication to help him interact. He went from the zombie stage to the hyperactive stage. Autism was considered a mental illness, and they treated it with psychiatric drugs – and it was not good at all," she said. One drug made him violent, but another turned him back into a "zombie."

Back then, many health care providers did not view autism as a neurodevelopmental disorder. In an article published in 1984, two pediatricians at Kennedy Krieger Institute tried to expose some myths about autism, including "Myth #1: Autism is an emotional disorder" and "Myth #2: Autistic children become schizophrenic adults."5

Still, those myths persisted. For the Sweetneys, people's fear of autistic behaviors, and confusion about mental illness, led to traumatic moments in doctor's offices and hospitals. "Back then autism was so rare that every place I took him, they had never heard of autism," Mrs. Sweetney said. "When he was a child in the hospital, they used to handcuff him to the bed even though he was 47 pounds. They would station a guard next to the bed because they were scared of him."

One doctor encouraged Mrs. Sweetney to consider a vasectomy for James; he was 7 years old at the time. "He said to me, 'He's handicapped, and we wouldn't want him to reproduce.' So I said to the doctor, 'Are you married? Because I wouldn't want you to reproduce, either.'"


James developed unusual eating habits, rarely slept, and had severe tantrums. After witnessing one such tantrum, his shocked psychiatrist admitted him to a hospital. There, doctors discovered a medical problem affecting James' behavior: he was having seizures throughout the day from epilepsy.

Later, in his teen years, James became violent, his mother recalled. "His psychiatrist and primary care provider told me it was just the autism, and they needed to institutionalize him. I said, 'He's didn't become autistic yesterday. Why is he all of a sudden having these problems?' They said institutionalization is a final step after you've tried everything else."

Jacqueline was not ready to quit; she had to speak for her son who could not. She pleaded with another hospital to take him right away. During a stay at Kennedy Krieger Institute, doctors discovered he had Crohn's Disease, a chronic inflammation of his gastrointestinal tract. Pain from medical conditions can cause extreme behavior, particularly in people who cannot otherwise communicate. A 2014 article in a medical journal urges doctors to treat a severe change in behavior as "the canary in the coal mine" alerting them to a possible medical problem affecting a patient with autism.6

Children born with autism today face a dramatically different world than the one Mr. Cox and Mr. Sweetney did three to four decades ago. At the very least, school districts, medical offices, politicians, celebrities, and average people are aware of autism, which now affects 1 in 68 children.


Personal Notes and additional information:
I grew up 10 to 20 years before the autistics documented in this article. My school threw me out after 2nd grade in 1965 saying they just could not get through to me giving my mother (back then the mothers made all the child rearing decisions) two options home schooling and private school. A private school accepted my parents money and I was accepted back to public school for 5th grade but in retrospect it was too soon. It was the law in several states that schools could not accept anybody with physical or intellectual disabilities disabilities ("cripples" and "mental defectives" as we were called then). I believe the only reason I was not institutionalized for life was because I was privileged because my parents were teachers.

The parents documented in the article were atypical for their time and their kids were lucky to have them. As weird as it seems today what the "experts" said be they teachers or doctors were rarely questioned by parents.

Rant:
I may stir up a hornets nest but while I am glad what has been described above is mostly gone I think we have go too far in the other direction. I was expected to complete my homework, be home for dinner on time, figure out my own games and suffer consequences for my mistakes, that was pretty much it. While I would not know I was autistic until a few years ago this freedom allowed me to figure out what worked for me and what did not. While my life has been anything but typical this "free range parenting" (allowed to walk several blocks by myself when I was 6 or 7, take public transportation by myself at age 12) has helped me. Every kid is different and there is a wide range of functioning levels, if kids were allowed to be kids it would help them autistic or not.
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Last edited by ASPartOfMe on 13 Nov 2017, 6:52 pm, edited 2 times in total.

leejosepho
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13 Nov 2017, 5:21 pm

ASPartOfMe wrote:
...while I am glad what has been described above is mostly gone I think we have go too far in the other direction. I was expected to complete my homework, be home for dinner on time, figure out my own games and suffer consequences for my mistakes...figure out what worked for me and what did not.

Yes, I also was a free-ranger in that regard. However, I lived in a small, rural community in the late '50s and early '60s where I did not have to deal with the overwhelming universe faced by many children today.


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14 Nov 2017, 9:52 am

Just like with NT kids, you should parent the child according to that child's needs -- not parent the child you have in a particular parenting style solely because that is what appeals to you philosophically or because that is what you experienced or would have preferred for yourself.

Whether people are NT or not, often times they assume their child is a "mini-me" and all you have to do is parent based on your own notions and preferences. With the average NT kid you can probably (but ought not to) get away with that kind of strategy. You can probably (mostly) even get away with that with kids on the spectrum who are close to being NT especially if they can "pass" as NT.

Most of the parents on here don't have kids who can pass (or went through at least one developmental stage of not passing) because part of why they are on here is because they already tried it the other way. You may have to use a parenting style, you never expected and then modify that (heavily) to adapt to your particular, individual child.

Right now there is a backlash trend (not sure if that is the best term) against "helicopter parenting" towards "free range parenting" and none of that has anything to do with anyone who is actually custom parenting their particular child, which is what I presume most parents on here are doing or they would not be here on this site.

I really don't get the whole parenting trend thing anyway because I am not NT enough to understand the psychological need to generate trends. Most of it with parenting anyway, seems designed so that society gets to create a bludgeon to use on parents, especially mothers, so I disregard it. If there is an idea in the ether that might be a good idea to try, I try it. Otherwise -- meh.

You can only let your kid be as free-range as safety permits. You may have decided, for whatever reason, that parents are not good judges of this and over-protect, but again I think that applies to people who follow trends or follow advice mindlessly, without doing occasionally check-ins to see how their child is progressing on the regular. That does not sound anything like the parents here.



kraftiekortie
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14 Nov 2017, 11:11 am

I guess I was pretty lucky. I was diagnosed with autism, and institutionalization was recommended.

My mother was similar to those mothers ASOM described. She said "Hell No!" (in not so many words). She took out the cue cards, and she did some ABA-type interventions. She was an undergraduate psychology student at that time.

My mother was diligent enough to find a research camp called "Camp Harrelson." They were conducting autism research. My older brother and I were among the subjects. My brother was a normal "NT" kid; whereas I was a nonverbal autistic child. For some reason, I said my first phrase there one day ("I see a ball.") I started speaking in sentences soon after. I don't know why this happened.

I went to what was actually called a "brain-injured nursery school" for my Kindergarten year. Then I went to PS 158 in Manhattan, and placed in a class with kids with multiple disabilities (e.g., deafness, intellectual disability, various others). Fortunately, the teacher was very good with knowing what kids needed. She let me read on the side while she taught the other kids rudimentary reading (even though I always got a zero on phonics tests). I was bused in from Queens; I don't think I was affected by that, though I didn't talk to any of the other kids.

Then, the big Teachers' Strike of 1968 hit. My parents had to find a school for me. Fortunately, they found one rather quickly. It was known as the Summit School. It catered to kids with multiple disabilities, and was ungraded. I was placed in what may be termed the "academic track," though it wasn't called that. I used to act up frequently, and would get thrown out of class and sometimes sent to the principal's office. Usually, though, I just stood in the hall. There were no "safe spaces" or anything like that. If you didn't "behave," you were disciplined. I wasn't very good at listening; but, fortunately, I had the initiative to learn academic subjects on my own, with a little bit of help from the teachers.

I was raised with strict discipline. If I said "damn," I was hit with the belt. When "company" came over, I had to stay in my room after being introduced to the "company." I never got any "accommodations" because of my autism, or my Asperger's-like symptoms later in my childhood. I just had to muddle through.

Somehow, I know not why, I was strong enough to muddle through the bullying and the scorn of teachers, and receive satisfactory grades most of the time. I didn't make Honor Roll in junior high because I would invariably fail gym, or get a bad grade in it. My test scores indicated that I should have been in a "special progress" class---but they put me in "regular classes." School really was a stinker!

Imagine if they had the Internet, and all the "latest" innovations in autism????



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14 Nov 2017, 11:54 pm

...I don't know what to say. I will say this, my younger brother being " really " autistic (though therm wasn't used for him early on) made me more " normal "- seeming by contrast I suppose... But I was seen as " special" /disadvantaged from early on I suppose.


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B19
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15 Nov 2017, 2:49 am

My children started school in the 1970s. Their experience was nothing like the one in the opening post, and the USA seems to have attitudinal issues of the kind the article highlights, though it isn't representative of other countries perhaps. My son needed some speech therapy as he was a bit delayed there though otherwise with support and encouragement from dedicated teachers my AS children were respected and encouraged, and both have done well.

I think the USA must be one of the worst places to be an AS child, from what I have read here.



traven
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15 Nov 2017, 3:15 am

B19 wrote:
My children started school in the 1970s. Their experience was nothing like the one in the opening post, and the USA seems to have attitudinal issues of the kind the article highlights, though it isn't representative of other countries perhaps. My son needed some speech therapy as he was a bit delayed there though otherwise with support and encouragement from dedicated teachers my AS children were respected and encouraged, and both have done well.

I think the USA must be one of the worst places to be an AS child, from what I have read here.


My children started school around 1990, but as soon as the first went KG we moved to a better neighborhood with a better sort of (parents-overviewed) school, i was intimidated/agressed several times at the former location, angry mob, bottles through window, the things you get when you clean up the neighborhoods' greenspace.
Reoccuring aspie mistake or misunderstanding; to do actually what is preached- taking rethoric litteraly.



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15 Nov 2017, 5:46 am

Quote:
sometimes confused with mental retardation [or] emotional disturbance [...] to use the terms of that time.


I feel this is still the case. Do others get that impression? It seems if someone has an autism diagnosis, everything they do is attributed to this, and other things (such as an intellectual disability) are not quite factored in. Or, the possibility of autism is ignored and symptoms get diagnosed, rather than being recognized as symptoms. For example, I see Intermittent Explosive Disorder (something I'm skeptical of, since anger seems more a symptom than disorder) diagnosed to people with clear autistic traits, who don't appear to have ever been screened for autism. It doesn't seem to occur to the professionals that the anger may be a way of communicating or expressing something, rather than the problem itself.



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15 Nov 2017, 6:59 pm

B19 wrote:
My children started school in the 1970s. Their experience was nothing like the one in the opening post, and the USA seems to have attitudinal issues of the kind the article highlights, though it isn't representative of other countries perhaps. My son needed some speech therapy as he was a bit delayed there though otherwise with support and encouragement from dedicated teachers my AS children were respected and encouraged, and both have done well.

I think the USA must be one of the worst places to be an AS child, from what I have read here.


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 retarded" 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.



ASPartOfMe
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15 Nov 2017, 9:39 pm

B19 wrote:
My children started school in the 1970s. Their experience was nothing like the one in the opening post, and the USA seems to have attitudinal issues of the kind the article highlights, though it isn't representative of other countries perhaps. My son needed some speech therapy as he was a bit delayed there though otherwise with support and encouragement from dedicated teachers my AS children were respected and encouraged, and both have done well.

I think the USA must be one of the worst places to be an AS child, from what I have read here.


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.


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

ASPartOfMe
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15 Nov 2017, 9:41 pm

kraftiekortie wrote:
My mother was similar to those mothers ASOM described. She said "Hell No!" (in not so many words). She took out the cue cards, and she did some ABA-type interventions. She was an undergraduate psychology student at that time.


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


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eikonabridge
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15 Nov 2017, 11:56 pm

Tawaki wrote:
Those schools were just holding pens to give the parents an 8 hour break.

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.


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traven
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16 Nov 2017, 3:34 am

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 'retarded'(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.



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16 Nov 2017, 10:06 am

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.