We have autism all wrong: The radical new approach we need to understand and treat it

[KamaAina]

http://www.salon.com/2015/08/16/we_have_autism_all_wrong_the_radical_new_approach_we_need_to_understand_and_treat_it/

Unfortunately this behavioral-assessment approach—that is, using a checklist of deficits—has become the standard way of determining whether a person has autism. We say a child has autism if he displays a combination of traits and behaviors that are deemed to be problematic: difficulty in communicating, trouble developing relationships, and a restricted repertoire of interests and behaviors, including repetitive speech—known as echolalia—and actions, such as rocking, arm flapping, and spinning. Professionals observe these “autistic behaviors” and then assess the people who display them by using a sort of circular reasoning: Why does Rachel flap her hands? Because she has autism. Why has she been diagnosed with autism? Because she flaps.

Following this approach means defining a child as the sum of his deficits. How best to help such a child? By managing those behaviors or attempting to get rid of them: to halt the rocking, to squelch the echoing speech, to reduce the flapping. And what denotes success? The more we can make a child look and act “normal,” the better.

This way of understanding and supporting people with autism is sorely lacking. It treats the person as a problem to be solved rather than an individual to be understood. It fails to show respect for the individual and ignores that person’s perspective and experience. It neglects the importance of listening, paying close attention to what the person is trying to tell us, whether through speech or patterns of behavior....

What’s more helpful is to dig deeper: to ask what is motivating these behaviors, what is underlying these patterns. It’s more appropriate, and more effective, to ask “Why?” Why is she rocking? Why does he line up his toy cars that way, and why only when he arrives home from school? Why does he stare at his hands fluttering in front of his eyes, and always during English class and recess? Why does she repeat certain phrases when she is upset?

At last, an NT professional who gets it!

[hunter]

1. I'm reminded of the movie Iron Sky where the Nazi doctor "fixes" the black guy by making him white.

http://www.imdb.com/title/tt1034314

As a middle aged autistic spectrum person myself I'd learned in the school of hard knocks and occasional formal therapy to behave "normally."

But now I'm past fifty and just god damned tired of acting. I don't care if people think I'm eccentric. I am.

I take meds for problems that are most troubling for my immediate family and me personally, since feral street life in this society is difficult for both humans and dogs, but beyond that I'm no longer interested in any kind of conformity. If my fidgeting and obsessions annoy people, then that's their problem. If there was a magic pill that would make me "normal" I'd refuse it.

[KamaAina]

2. Temple Grandin has stated this for the record.

If there was a magic pill that would make me "normal" I'd refuse it.

She's worried that it would take away the special skills that put her at the top of her field.

[hunter]

3. Yeah, I probably stole it from her.

But I'm never concerned about any "special skills."

I just want the freedom to be comfortable in my own skin, not to live every waking moment in terror that I will "mess up my lines" in my life among the normal people.

I shouldn't have to keep my natural self closeted and censored. My natural self is a very nice guy with high ethical standards, but a bit odd and fidgety, with peculiar obsessions.

Don't ask about the occasional bad hairs on my face. I've bought special glasses and tweezers for those. I will track those bad hairs down and remove them.

At my very very worst "off ny meds" self, the campus and local police regarded me as an amusing diversion from their sordid late night duties of domestic violence and such. Helping me find my clothes among the random piles of kelp on the beach past midnight was nothing more than a funny story, as it is with me. I have many funny stories, wonderful and weird stories, of the "roomy from hell" including the ex-significant other sort.
plenty of witnesses who can tell anyone exactly what is wrong with me.

I was the roomy from hell, and sometimes a disturbing mystery.

Who are those guys asking about Hunter?

I used to make buttermilk from government surplus powdered milk on top of the water heater. And I can brew beer from anything.

But I'm "mostly harmless."

Sometimes with past midnight donuts and coffee and a free ride home to irritated house-mates who'd long quit worrying about my frequent disappearances, just as my parents had, once I was sixteen with an automobile, quitting high school, a high school dropout in college, and soon university,.

Two years I was a minor human sub-eighteen year old in college. They had a special class for us, and there were a few professors who were very uncomfortable that minor students parents had to sign off on field work.

Autistic people have the same range of intelligence as everyone else, from the highly intelligent with marketable skills (my grandfather was such, an aerospace engineer) to the entirely dysfunctional and not-so-special keep-it-in-your-pants sort..

But we are all human beings and deserve to live freely so long as we are not a danger to ourselves and others.

One of my grandmas, not my normal but anxious grandma who married the autistic spectrum aerospace engineer grandfather, was probably somewhere on the autistic spectrum herself, and she was very proud that she had a lifetime career, could focus herself for eight hours a day of work with occasional overtime of her good union job. But after work my grandma had other severe mental health issues besides autism, a very dark side. Outside of her work her personal life was always a flaming and explosive high drama catastrophe. There were no bridges she couldn't burn behind her, no kind of good intentions she couldn't reforge into knives to cut people with.

After my grandma retired she lost her sanity entirely becoming a danger to herself and others. She had to be removed from the home she owned outright by police and paramedics. She held them off for hours cussing, throwing things, biting, hitting, kicking, and screaming, up until she was strapped to a gurney and sedated. Had she not been white, or had she'd remembered the guns she'd hidden away from my mom, my grandma probably wouldn't have survived that long afternoon.

No "extended care" facility would or could hold my grandma for long, even those who specialized in nasty mean old ladies. So my grandma often ended up in the master bedroom of my parents' home with her evil cat.

Honestly my grandma would have been just as happy as a nasty old bag lady living on the streets spewing castrating or slut-shaming words to anyone passing by.

In her youth, high times in World War II, my grandma was Rosie Riveter by day, a party girl by night. She knew horny sailors, just as she knew bad dogs, horses, and hot metal, My mom was born to a girl just past sixteen, sort or like Jesus.

But hell no, my grandma was no Sweet Mother Mary.

[mapol]

4. Temple Grandin has made a very good point.

She'd have every reason to worry about the possibility that the special skills that put her at the top of her field would be taken away.

[Mopar151]

5. Who's defective here?

Social conformance ain't shit, but it's the only tool available, or acceptable, to a lot of NT. Sumbitches don't trust arithmetic, 'cuz it might mean they're full of shit!

[PoindexterOglethorpe]

6. I have a son on the spectrum.

I am truly sorry that Asperger's has been removed from diagnosis, as I think it was a very useful definition.

He knows he's different from others, and would not want to be different than he is.

He also happens to have alopecia areata, an auto-immune disorder that causes hair loss. He has the most extreme form, universalis, which means he not only has no head hair, but not eyebrows, eyelashes, any body hair whatsoever. So he's very distinctive looking. Oh, and he has told me that if a cure for that were ever discovered, he has no interest in having hair again.

[Dark n Stormy Knight]

7. Thist is a really good article. But it brings to mind an issue I've faced as a person with

Asperger's and as a former classroom teacher trying to meet the needs of both autistic and non-autistic children: How do we accommodate both people when we have one person with autism whose coping behaviors deeply disturb another person with autism due to the hypersensitivities their autism causes?

I don't actually expect an answer, because I don't think there is an easy one.

I know that my own hypersensitivities seem to have become heightened with each passing year. And the past few years have been especially hard due to a lot of death and illness in my family. Maybe it's just the difficulty anyone would have with those events, but I feel it's made it harder for me to cope with my hypersensitivities.

[Dark n Stormy Knight]

8. OMG, sorry! I just noticed this convo is from about a hundred years ago!

[cksmithy]

9. I am glad you responded even if it is from 100 years ago.

My daughter was always sensitive to loud noises. As an adult, I finished my college degree, and learned about asperger's syndrome while getting my teaching credential. It seemed she was a littler aspergy. My daughter made it through school and graduated college but never got a job that fits with her high IQ/intelligence. I also realized my husband probably has Asperger's. After my degree and teacher credential, I taught elementary school, mostly 2nd grade. At the time, classrooms were supposed to be noisy group projects, all working together. I always made sure there was plenty of quiet time for my students, who needed quiet time. I think most children do need quiet reflective time to figure things out. I think our society has become too loud. Understanding and quiet time is good for all of us.

[Dark n Stormy Knight]

10. OMG, I couldn't agree with you more!

Last edited Sat Jul 1, 2023, 03:35 AM - Edit history (1)

I cannot tell you how disappointed I am that librarians no longer shush anyone. The library is no longer a safe respite from the hustle-bustle, cling-clanging of the outside world.

I also taught elementary school and only later learned I had Asperger's, though I long suspected it. I believe that had something to do with why I did more than any other teacher I knew to accommodate the kids who needed a quieter, less hectic environment, but it's tough when you're all in one relatively small room.

If I'd been diagnosed with Asperger's back before I went to college to become a teacher, I don't believe I'd have taken Elementary Ed as my major. I never understood how the other teachers could put up with all the commotion and they never understood why I made my students walk quietly in line in the hallways and, a few times a day, had the whole class put their heads down on their arms crossed on their desks and sit quietly for a few moments.

Btw, there used to be an organization working to reduce noise pollution. Whatever happened to them, I wonder.

[cksmithy]

11. Around 2007,

I was sent to a new math curriculum class for teachers. It was like teaching how to make noise, all work was done in a group setting. Children need to have math facts stored in their heads/mind before they can come up with strategies in a group of 5 to solve abstract word problems. If they don't have math facts easily accessible in the minds, they either feel not so smart or dumb when they can't keep up or understand what the other students are doing are doing in their group. As teachers we observed this method taught during class time in an actual math class. The noise was deafening, then only 1 or 2 were given time to demonstrate how their group solved the problem, all on white boards that were erased at end of class. So, the students who didn't get it right, did not get the attention they needed because math time was over. All their work on a white board was erased and not checked.

It never made sense to me. I was retired already when, I had my grandchildren during the times schools were closed due to covid. They went to zoom school, and their teachers, 1st and 4th, had them go into breakout rooms for discussions with other kids. It was not very nice for the kids, I would interrupt when kids were rude or laughed at one kid and try to redirect the conversation. Their teachers apparently thought every child knew how to speak on video calls, mine didn't.

I love to hear children laughing and having fun, which we had plenty of in my classroom. I always loved teaching, and even as a 4/5 grader, my teacher would ask me to help explain things to other students. In high school, a friend told me, " That makes sense, now I understand." I always wanted to be a teacher.

Thanks for responding.

[Dark n Stormy Knight]

12. Through my 20 yrs of teaching, there were so many

workshops meant to get us to use trendy new ways to teach. Some made sense, either for some or most students, but many seemed ill-advised, for instance the group math fiasco you described.

I was open-minded about learning new techniques, but a lot of the in-service days were just there because they were contracted. There was like an industry of people offering workshops, of
ten of dubious value.

We had loads of noise & fun & laughter in my classroom, too. Even with my Aspie issues loved teaching, except for the increasing problems with clueless administrators & belligerent parents.

I really miss getting to know a new group of fascinating personalities each year!

Nice chatting with you.

[cksmithy]

13. I was an instructional aide

for 10 years, got a degree, credential, then taught for 10 years. Every administrator I ever worked for, only taught for few year before getting their jobs, yes, they were clueless, and parent's always believed their child about teachers and kids in the classroom. Parent's couldn't see the small nuances that would of made a great difference in their kid's ability to get a good education. The math fiasco was 5 days of training, out of the classroom, with subs for all the teachers. Wasted week.

I once had a student with a lazy eye, whose optometrist, said they would grow out of. (School nurse always did a test when I suspected they needed reading glasses.) The kid was 8 years old and didn't do well during testing and was really smart but would get upset when she didn't do well. Optometrist get about 4 years education, teachers about 6 years education in all, getting credential and student training. Parent thought what did I know. Parent got mad at me for even suggesting her child needed glasses or some type of treatment. The student continued out the year not seeing or reading properly. Then I have had other parents who apologize for not recognizing their child's visual problems and are so thankful the school nurse and I told/suggested that their child get treatment. Oh well.

I miss teaching too but I physically can no longer teach or even be a sub. And I do not miss all the paperwork, testing, forms, etc. that has become the new norm.

Nice chatting with you too!

[Dark n Stormy Knight]

14. I hear ya on every point!

An early indicator that Trump and his fans were as awful as I'd suspected was when he proudly told the story of how he hit his 2nd grade teacher and his cult cheered.

Ugh. Terrible feeling having been an educator who endeavored to teach kids to think* and to see so many who refuse to do so.


*I completely agree that there are some things--like multiplication tables--that students need to just memorize!

Here's wishing you health & joy!

[cksmithy]

15. The worst thing I

heard as a teacher during grade level meetings, was hearing the other teachers saying that nothing could be done about bullying. It was just going to happen and since we couldn't be every where to help students, why bother, or that it didn't really cause any emotional consequences. Not in my classroom or while on yard duty. I believe that some kids just weren't taught how to be polite/kind, I tried to help all students realize or think about how their actions could/would make others feel.

It is nice to hear from you again!

[PoindexterOglethorpe]

16. Bullying!

My son with Asperger's was bullied in elementary school. At the beginning of his 6th grade year, a friend whose son was a year and a grade ahead of mine, and who had similarly been bullied in that elementary school, called me and said, "Poindexter, you absolutely cannot send your son on to the middle school next year." She then told me in some detail how the bullying had gotten even worse in the middle school. It wound up being bad enough that they eventually sent him to a different middle school in that same district. She then went on, "You've often said that private school could be an option for your son, and that's what you must do, send him to a private school."

A bit of research led me to a local, secular, private school, and he went there starting in 7th grade. Our only regret was that we didn't move him earlier. They didn't tolerate bullying. Plus, being smart was an asset there. At the public school being interested in sport was almost the only thing that mattered. I had the enormous good fortune to have generous in-laws, his paternal grandparents, who were more than happy to pay for his private school. But I would have cleaned houses, if necessary, to pay for that tuition.

[cksmithy]

17. I am glad you got help for your son.

I taught from 2000 to 2012. Bullying was rampant. Teachers come from all sorts of backgrounds and some do not appreciate the damage bullying does. Some teachers just go with what the other teacher's are saying, don't want to be called out for trying to help some student-which is also bullying. I loved teaching, it was a second career, and I am now retired.

[PoindexterOglethorpe]

18. My son is extremely smart, like so many Aspies.

He is currently finishing his PhD in astronomy at George Mason University in Fairfax, VA. He went to astronomy camp at the University of Arizona in Tucson three years (one beginning, two advanced camps). After that first camp we were out in Tucson over spring break, and I was able to arrange to get together with the astronomer who ran the camp. While we were waiting for my sons (younger son was also there) to order food in the student union, the astronomer quietly used the word "genius" to describe my son. I doubt he used that word casually.

It's been a very long journey for him. He's essentially been going to school his entire life, and is now 40. Presumably he'll get a job as an astronomer next year. His area is exo-planet research, which is currently a hot field in astronomy. Like any parent, I think my son is the most amazing and wonderful person in the world. I've joked with him for years that when he wins the Nobel Prize, if I'm still around, I get to go with him to Stockholm, and he must say, "I owe this all to my wonderful mother."