Autism education - please help :)

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Hi there,

I'm a closet aspie (undiagnosed) and a social service worker with a passion for ASD and cognitive/developmental disorders. I work in Long Term Care doing quality management at the moment and am planning an education session on ASD in LTC.

My presentation is almost complete, the topic "Supporting resident's living with Autism Spectrum Disorder in the Long Term Care Environment"; however, I feel it's missing something that would help our staff to better understand how they can support an adult living with autism.

I have a couple slides that are devoted to techniques to reduce the chance of "responsive behaviours" (ie behaviours that result from an unmet need, trigger, etc... All behaviours have a meaning behind them). I have 2 slides of tips on how to support an escalated resident with ASD. What I would love is a slide or 2 on tips provided by adults living with autism.... Real tips from people who know what they need or would need from their caregivers.

If you could kindly provide me with your tips on how a caregiver could support you or another individual living with autism, it would be greatly appreciated. If you could give me your first name or nick name that would be great too, it will add realism to the presentation.

I would appreciate any comments... I want staff to really feel more empowered and educated on what they can do; particularly so because we currently have a resident with ASD in his early 60's and there is a lot of fear in staff because they're used to residents with dementia, not autism... They have experienced some violent behaviours and we would really like to teach them ways to help this resident so that these behaviours don't occur as often.

Thank you so much!

It's important to note that we do not like to restrain or provide sedative medication to our residents, we are all about and for alternatives to behaviour management.

Also important to note that my employer and my coworkers are not aware that I have aspergers. Yes I am undiagnosed but I know I have it , I struggle daily just to fit in an often fail miserably. I'm a loner and prefer to work alone, my office is in a quiet area with minimal distraction but I've taught myself over the years how to act at work and have a very supportive work environment so I have not felt the need to tell them.

Who I am at work and who I am when I walk out that door are two different types of ppl (socially), I run from social situations.... Hate small talk because I neve know what to say, and often cry myself to sleep thinking my coworkers hate me because I can't read their non verbal cues. My hubby calls me "Houdini" because as soon as company comes over, I dip out and hide in my room. Lol...

I think I may have told one person at work and now she treats me differently, so I keep it a secret and try and fake normal.

Yes, I told someone at work, now he can hardly stand to speak to me. It seems like he is afraid it's contagious. I think he may be an Aspie, though, so I guess that complicates things.

Do you only want tips from people receiving care like in a residence?

I'm a 68 year old male, married, autie/aspie, with a 67 year old wife (my teenage sweetheart to whom I have always been faithful and true) and a 30 year old daughter plus two grandkids - seems normal enough you would think - but I had a bizarre infancy, childhood, and early teens, peppered with five failed (obviously) attempted suicides and over 1250 freaky not so failed suicides from which I came back to life when I figured out how to do it - at the age of fifteen and a half, realising how futile attempting physical death was, I committed mental death, by self-inducing retrograde, anterograde, psychogenic and dissociative amnesias that wiped out my memory and personal identity - and kept doing so - and spent the next 35 years of my life not knowing who I was or what I was doing or where I came from or why I was here or how I got here - despite this I had a fabulous professional engineering career on autopilot helping improve the health, wealth and happiness of literally billions of people around the world - until the immaturity of my acquired personal identity collapsed and I had to have psychiatric intervention by hypno-regression diagnosis and treatment to get back on course - during that therapy I was found to have autism and asperger's syndrome - which was a huge relief as I suddenly had labels I was able to use to make sense of my world and place in it - resulting in my performance at work sky-rocketing practically out of sight of anyone else in the department where I worked and my salary sky-rocketing with it due to three promotions in three years until I was the highest paid principal engineer in the place - this attracted requests for me to coach and counsel others with these conditions or suspecting these conditions were holding them back, so I accepted the invitation and did it via the internet, at home, in my own time and at my own expense - word soon around and before long I was coaching and counselling auties and aspies and suspected auties and aspies and relatives and friends of same all around the world, and not just in my profession but across the entire spectrum of living and working with autism and asperger's syndrome - when I retired from my professional working career I dedicated my extra leisure time to reading books, studying courses and field-trialling as an autie/aspie the massive variety of non-medicinal positive psychology and personal development programs or applications that you can find inexpensively available for neurotypicals as there are 99+ times more of them than us auties/aspies using the internet nowadays and I wrote and published an autobiography of My Life of Autism and Asperger's Syndrome culminating in an analytical breakdown of a recent six months stint of my coaching and counselling practice via an world-wide internet Questions and Answers website, where I had been awarded Top Contributor badges in Mental Health issues and in Singles and Dating issues for my replies to questions consistently being voted as the Best Answer for them - since then I have revised my profile in Linked-In and been awarded Top Contributor badges in several of the writers groups I have joined there - I also have a website and a blogsite, and four ebooks on Amazon Kindle; and am just starting four more ebooks, that I will publish by September, and have just started building a business designed to provide internet resources for pre-schooling, home-schooling and special-educational-needs-schooling for auties and aspies whose education suffers in state systems for whatever reasons - this includes mentoring a 20 year old autie/aspie away from suicide ideation who wants to work in my business with me

please email me adriant.esq@btinternet.com if you think I can help you with your project

What i like from caregivers:

- Keep your promises and tell me if you're gonna be later (even if it;s only 5 min).
- Listen to my words more than to my body language (take what i say literally).
_ Don't add any meaning other than my words to my words.
_ Don't assume my reality is the same as your even when i explain how things are from me.
- Don't assume a word always will mean the same for me as it does for you.
- Try to check if you understand what i meant.
- Sport can help when i have anxiety, so willing to play sports with me when i need it would be awesome.
- Let me withdraw from activities when i need to.
- Use the metaphors i use to explain some thing.
- Don't ask me to make eye contact,.
- Let me stim.
- I had a carer who could look at me amused and friendly and just let me talk without giving my any input when every reply would trigger even more thoughts i couldn't stop. Although he didn't reply he listened well and took me serious. It was a good thing he didn't trigger any more thoughts at the time.

Last edited by RemiBeaker on 02 Mar 2014, 11:17 pm, edited 1 time in total.

Ditto to all that "RemiBeaker" said above.

Another thing I would want, but would never get, especially in your setting, is respect; to be seen as fully human and taken seriously.

JUST TAKE MY WORD FOR IT. Whatever *it* is. Don't try to interpret or project or whatever it is you do before you dismiss what I'm saying. Especially when you don't understand, JUST TAKE MY WORD FOR IT. Or maybe I should say, emphatically, *BECAUSE* you don't understand, JUST TAKE MY WORD FOR IT.

You are right to keep it in the closet. Once you let them down-grade you, you'll never get it back. People are people, regardless of how enlightened and professional they think they are. You are either fully human and deserving of respect, or you are not. It's like they have a on/off switch, and there's nothing in-between.

This isn't just an Aspie issue. I see it in the elderly patients I've had. I work as a private nurse's aide with patients in their own homes, where you'd think they'd get at least a little respect.

I'm thinking now of one woman in particular, perhaps around age 85. Yes, she has some dementia issues, but I think it's mostly just a bad memory. I don't believe it has changed her personality at all. She was an independent, professional, competent adult, and accepting the need for help at this stage is extremely difficult. Personally, I'm sure that she is an Aspie and always has been. I can relate, and can see myself in exactly the same spot in a couple of decades. (I haven't said anything about this and don't intend to. It wouldn't help her.)

People talk over her head, behind her back, or right over her when she's right in the room and talking. Then she is considered "rude" or worse when she tells them to "shut up." I've actually had to argue with staff over the stupidest little things, like whether she should be allowed to spend her own money on "Puff's" tissues rather than a cheaper brand, or food choices that have nothing to do with any legitimate medical condition. It's not that the dementia has changed her preference or life style. She has always been who she is. I can imagine a sensory integration issue as the reason for her tissue preference. But more importantly, it's her clear preference, and none of their damn business. Multiply that by a gazillion issues, big and small, all day every day, and it's enough to drive anyone insane. The stress of losing control of her own house and life is going to kill her faster than anything else they can do to her.

Now put that into an institutional setting, and you're just asking for violence.

Bottom line: take the client's word for it whenever possible. You don't need to understand or approve of every little personal choice.
One rule-of-thumb is that, if this were a "normal," of fully human individual, would you be imposing your values or preferences on any given issue? Most of the time, the answer would be "no."

Another Item: Body language extremes. Some "professionals" will never understand this one at all.

Some people go to the opposite extreme (beyond NT) and are so dependant on body language that I would consider it a severe disability itself. To the point that they really can't hear you at all unless you make eye-contact or whatever other non-verbal song and dance they expect. Someone like that really needs to get out of the business entirely. There's no excuse for working with Autistic people if you can't grasp this most basic concept.

I speak only Standard English. It is my native language and the only one I know. I’ve spent my whole life trying to bridge the gap. I don’t even hope for the other person to meet me half way. Just don’t pretend that your way is better than mine, or demand that I become like you..

(Actually, their existence disgusts me. Personally, morally, philosophically… We disgust each other. I can keep the disgust to myself, to the extent possible, but I have no desire to be like them. We would both be better off if we didn’t need to deal with each other at all. The worst is having a nut-job like that in a position of authority over me.)

OMG thank you for responding (all of you), I was quite fearful that no one would.

I am going to read the posts and take notes.

I am definitely looking forward to the read and to more comments!

Thank you all so much.

OMG thank you everyone!

As soon as I can get a quiet moment to actual read the comments I'm going to see what you all had to say. I'm looking forward to it, greatly!

Any more comments are certainly welcome!

In the counselling portion of the social service worker program they tell us to look for discrepancies in what the person is saying and what their non verbal cues are saying; this may be why most professionals assume that if the two do not match then they should look at the non verbal cues for truth.

They should look at the non verbal cues but not assume they are truth.

They should listen.

They should try to understand, try to offer support.

They need to be taught that the person needing their care probably feels much more fear of them, or the world, then they have any reason to feel toward the individual needing to trust them to care. And if they understand that, rather than treating like the enemy or escalating, they can help, and they will be safe.

There is nothing so escalating as someone treating like one is too different to be worth bothering with, too different to bother trying to understand, and crazy because communication is challenging or interactions seem a bit of a surprise.

Thank you, waterfalls. To answer your initial question, I'm looking for tips on how to support an individual with autism.

Not necessarily from someone living in LTC, but to share with caregivers in LTC so that they can better support our ASD residents.

Make sense? Sometimes I don't make sense lol.

All of this.
Also, if you are wanting to avoid violent behaviors, and the situation is escalating, leave him alone.
Say something soothing or calming and walk away.
Don't deliberately do things he hates, for example if he hates seeing you eat an apple, try to find a way around this situation.

If you need more examples / advice I have some, so just ask.

Another biggie is that they (both clients and staff) should be encouraged to write.

I know that therapists are not allowed to work with e-mail or whatever (insurance won't pay), which is a huge mistake when dealing with Autistics. I've never heard of a program that does this, but there should be one. It should be standard procedure. In-person therapy is useless.

For those who are too low-functioning to express themselves in writing, you do the best you can. But for those who write better than they talk, it would be the best way to communicate with a therapist. Even if you're sitting in the same room.

And don't under-estimate those who seem too low-functioning. There's plenty of people on WP and elsewhere who can't talk at all and, a few decades ago, would have been considered hopelessly ret*d and dumped in a warehouse. But give them a keyboard and prepare to be amazed.

Yes, encouraging whatever form of communication the person can use is important, though I do think in person therapies are important and useful.

It depends. If the therapist knows better than judge the person by appearances, or to try to read body language, an in-person meeting might be useful. Especially for the client who doesn't communicate well in writing. More often, it will do more harm than good, because most therapists can't do that.
It's amazing how your perception of someone can change, just from one brief meeting. Even I am not immune, even when I make a conscious effort. I'm thinking of people (more than one) who I've talked to extensively in a forum or other written form and thought I knew, but when I met them in-person I was surprised to find this intelligent, insightful person to be totally non-verbal and incapable of any eye-contact at all. Had I seen the person before those conversations, it would have altered my whole perception.

====================

For other topics that might be of interest:

If you haven't already, check out Jim Sinclair's "Don't Mourn for Us" http://www.autreat.com/dont_mourn.html

And while you're at it, you might check out the rest of autreat.com:
*History of ANI.
*Philosophy and goals of ANI.
*Autism, as experienced by some ANI members and as defined by some professionals.
*Links to ANI member homepages and to other autism-related sites.

Interesting point, Tahitti.