*trainig for first responders & ER staffs - please help*

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Sorry it was lengthy, but I have trouble omitting details when I write.

Sometimes, it is essential to insert every detail into a story in order for it to be a cohesive whole.

Some more that I ran into on YouTube just now:

Autism - First Responder Access & Functional Needs Training Series
ReadySanDiego
Published on Sep 14, 201
https://www.youtube.com/watch?v=jK6z3jatwz8

Autism Awareness for Police Officers by NPV Productions, LLC
Nick Padezan
Published on May 25, 2017
Produced for the Autism Society of Pittsburgh and ASERT
https://www.youtube.com/watch?v=tNKGcwOlLeY

Law Enforcement & Autism (SaharaCares)
Clear Horizons Academy
Published on Mar 20, 2013
https://www.youtube.com/watch?v=NHRFqGVAMu4

Below are the ones you posted earlier, identified:

Autism Safety for First Responders & Parents
ASET - Autism Safety Education & Training
Published on Apr 11, 2016
https://www.youtube.com/watch?v=HKUvcJVGHgk

Encountering People with Autism: A First Responders' Training
Allegheny County Chiefs of Police Association
Published on Apr 24, 2014
https://www.youtube.com/watch?v=xtDRIYslWXA

Autism Training for First Responders: The Fifth Question
AutismSocietyNC
Published on Apr 8, 2019
https://www.youtube.com/watch?v=nIflwT7Thpg

Autism First Responder Training Video
Autism Society of Texas
Published on Mar 13, 2016
https://www.youtube.com/watch?v=TNBV66MLGXc

Autism and First Responders: Seeing Beyond the Smoke
IOD TempleU
Published on Jun 30, 2014
Training video created for first responders in Montgomery County, Pennsylvania.
https://www.youtube.com/watch?v=mnua3jeek30

Thank you so much Mona. I just watched the San Diego one and another one that was super short. I think I have seen the ones you posted previously. But as you can see none of them are being taught by Autistic people. At the very most, some Autistic people comment a little bit but that is all.

Isabella, that is so sad and horrible that you had to go through that with the sleep test. I am so sorry for you going through that experience. Are you able to sleep propped up?

No, I can't sleep propped up or in any of the apnea-friendly positions. I sleep on my belly which was yet another reason I couldn't have all those wires on my chest, or a gas mask and hose stuck to my face.

Comments on the videos I've watched so far: Some of them are not clear enough that autism manifests very differently in different people. For example, one of them talks about autistic children being drawn to water as if that's a universal characteristic of all autistic children, not qualifying that with a word like "some" or "many", much less a percentage.

Also, one of the videos claims that autism itself is becoming more prevalent, rather than just that it's being diagnosed more.

One important thing that I think needs to be added to these videos is that there are, most likely, A LOT of undiagnosed adults out there. So there needs to be more training on how to recognize someone who is likely (though not guaranteed, of course) to be an undiagnosed autistic person.

Another concern: The vast majority of the autistic people shown in these videos appear to be from upper middle class white families. It would be good to show more blacks and people of other ethnic minorities, and also some more poor and working-class whites. Otherwise there's a danger that the cops will be subconsciously conditioned to consider the possibility of autism only when dealing with upper middle class whites.

Last edited by Mona Pereth on 19 Jun 2019, 5:38 pm, edited 1 time in total.

I had my stroke prior to being identified with autism, so this is very relevant to me. The autistic traits that my therapists saw during my stroke recovery which didn't fit the "stroke prototype" confused them, but I knew those traits as an intrinsic part of me and I was upset they were being judged. For example, they would say "You don't make eye contact. That shouldn't be part of your stroke damage ...", "A stroke shouldn't make you sensitive to smells", or "That repetitive behaviour (stim) shouldn't be part of stroke damage". These were behaviours / traits which I'd experienced from birth and yet I had to defend them. It was like the doctors thought I was acting these behaviours for entertainment purposes, or implying they only occurred because of my stroke. It was my indignation toward their attitude which led me to research my atypical traits ... and discover I was on the spectrum. I was formally identified with autism three years later.

The medical professionals involved with my stroke did not recognise any of my autistic traits as pertaining to autism, because they only looked at me as a stroke patient, expecting my stroke recovery to follow NT / Allistic patients' progress. I'm upset that they didn't recognise autism in my behaviours, but even if they couldn't identify those traits they should have been respectful and listened, when I said I'd have those traits since birth.

I don't see a recent thread from you in Autism Politics, Activism, and Media Representation. That section of the board is not as popular as "General Autism Discussion," but is more likely to attract the more community-minded people among us, and your thread will likely stay on the front page longer there.

This is one of my biggest problems with the doctors that I have encountered in the ER. They have very little ability to recognize Autism especially in women but they will argue that they know everything about Autism and fight you about how they know more about it than you do because they had a half hour training class. I have also had them tell me that they understand all about Autism because they have Autistic patients who come in all the time. But one of the things about that statement that I wonder is these Autistic patients that come in all the time, are they children and adults who come with parents and caregivers? It is one thing for an Autistic person to come in with a caregiver. That makes the Autistic person more obvious and the doctors will believe whatever the caregiver says. It's quite a different story for a "high functioning" adult to come into the hospital by herself. It is much more difficult to for the staff to believe that you are as severe as you are if you don't have a caregiver with you.

But I guess the blessing in all of that terrible situation is that you were able to get diagnosed. That is really great.

Thank you, that is a good idea. I never visit any other threads except this one. I am very simple minded and some of those other threads are too "adult" for me. But if you think that it would be good for me to post this project there, I will give it a try. Thank you.

I wonder if we could start a specific section just for this kind of thing and call it Autism training and protocols.

I agree with both of your posts about the criticisms. In my neighborhood, Autism would never be a consideration. The first thought would always be drugs, criminal or delinquent. As you probably guessed, I live right on the edge of the inner city where most everyone is poor and is either poor white, latino, or black.

There is also no distinction between how males might present and how females might present differently. I told one of my psychologists today in my session that females present very differently from males sometimes and she had absolutely no idea that that was even the case.

They also have no mention of how a person's functioning levels can change suddenly without warning like mine do. I actually talked to my good friend about that, he is also Autistic and extremely knowledgeable and he is also a trained counselor and has a degree in psychology. He explained that my functioning levels fluctuate so dramatically and so often because my neurology is just so sensitive that I am so incredibly overwhelmed so easily by so many things. That is what makes me GARS level 3 and why I need substantial levels of support even though I am extremely high functioning. He explained to me how anyone, Autistic or not, would lose functionality if they were so excessively overwhelmed and Autistic people who tend to be even keeled in their functioning levels would lose them as well under extreme stress. The problem with me is that my neurological system is so sensitive that I experience extreme stress by things that would not stress most people even from an Autistic standpoint. He also explained that my catatonia happens when I am so incredibly overwhelmed that I lose all ability to have volition. This is very similar to battle fatigue.

But that is why I am constantly fluctuating so dramatically and why I am so incredibly vulnerable. It is crucial that first responders and hospital staff understand this because if they do not, they immediately say I am a faker and they dismiss, bully, or abuse me. But if they can understand how this works, they can make adjustments to help me feel safe. Making me feel safe is one of the most helpful things anyone can do for me and it starts by believing me and by believing that whatever I present is real.

Last edited by skibum on 19 Jun 2019, 6:19 pm, edited 1 time in total.

https://the-art-of-autism.com/females-a ... checklist/

This is a great resource for autistic women.

That is such a great list. It almost fits me perfectly. There are only a handful of things that don't fit me but I would say that about 90% describes me so well it could have been written about me. Thank you for sharing that.

I just remembered how a couple of years ago I had called the police to help me because I was close to going into overload shock from someone blasting a stereo on my street. I was frantic for the police to come and stop them. We have sound ordinances in our town so the police do need to come and stop the stereo blasters and they are usually pretty good at coming. The problem is that they take a long time to come and they don't give the fines and tickets that they are supposed to so it has no effect. The people just keep blasting their stereos. But I was frantic because bass makes me have massive meltdowns and I can literally go into overload shock and have my heart rate go up to dangerous levels so I either have to be able to escape it or it has to stop. But when I am home, sometimes I can't leave so the police have to come to make it stop. But this particular officer kept telling me to just deal with it because they had other things to do. I told him that I am Autistic and that I can't just deal with it and that it can actually become life threatening for me. He told me that he knew all about Autism because he has an Autistic son so I could just deal with it because it's not that bad.