I'm Giving a Talk re Asperger's at Work

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Hello,

I am a physiotherapist/physical therapist who works in a major public hospital in Australia.

Next month I am giving a talk to about 100 physios regarding Asperger's Syndrome. Most have no idea what it is!

I've learned a lot about it since having my 7 year old diagnosed but would like the perspective of people with Asperger's.

Would you be able to give me suggestions / anecdotes? Have you had any bad run ins with physios or doctors? What do you wish they would have known? How could they have given you better treatment? Any general words of advice for health professionals (keep it polite!)?

It would be good to hear your thoughts.

Regards
Smelena

Personally I'd like to have it themed that while it does have it's grim side, it's not the end of the world and so should be taken as such (so if your kid's been diagnosed with AS don't say "Congratulations, you're life's going to be a living hell!! ").

Oh yes - I'm definantly going to talk about the good side of it. I wouldn't change my 7 year old Aspie for anything.

I'm looking for particular advice for health professionals

eg A lot of asperger's have a higher threshold of pain
or A lot of asperger's are strong visually so write down their exercises rather than stand there saying blah blah blah
or A lot don't like eye contact so don't think they're not paying attention if they're not looking at you

That sort of thing or whatever you want NT health professionals to know. BTW one of the best surgeons I know is an Aspie. World renowned in his field.

Smelena

Let's hope he isn't too dyslexic:
"Cut that string for me would ya?"
*snips of several heart arteries*
"Oops..."

But yeah, that's good, and also say that it's in no way a disease, merely a sort of re-wiring of the brain of sorts (we've probably got sloppy electricians, I'll hire Mario next time) (if you've heard anything CAN's said you'd know what I'm talking about).

Tell me when and where you're going to touch my body....

Make it known verbally and explicitly what you are going to do and when you are going to do it, I'm most likely unable to ask the questions that I'm thinking. The more information given to me the better I feel.

- don't tell them that, they might hurt us more - is it osteopaths or physios that do the grade 5 manipulations...

- it would be even better to have little diagrams, I had excersises written down by a friend trying to teach me Tai Chi to get me more flexible, I forgot them all - merged them all into one. Even with stick men and arrows on the body parts showing what to do I could have worked them all out.

Mario is a plumber - you'd end up with an even worse job

I realize that, anyone's better than the bloke I ended up with! (probably a DIYer too...)

physios mmm. i had to see one about back problems, there was a lot of miscommunication, she had an agenda and i was supposed to fit it. her advice was ok, it's just ugh swimming pools and exercise and sport nnnnahhhh. the hand weights and floor exercises (solitary, non public stuff) worked better for me.

bad posture is really common in aspies so they might see aspies for that problem.

can't think of anything else right now.

It might be worth mentioning that Aspies can have varying degrees of motor skills problems - which could manifest as not being able to do an exercise right, for instance (hello and goodbye, yoga!) or having bad posture or an awkward gait.

And I second Postperson's point about prefering solitary exercises to anything involving public swimming pools. Ick on so many levels - not only do you have to socialise, you have to show off your lousy co-ordination in a swimsuit. No thanks.

And on the communication front, it would pay the health worker to actually check what we're doing to see we've understood - for years as a kid I was told "put your shoulders back" - but nobody checked to see what I did when I was told to do that. I was doing it wrong, and what should have been a fairly minor posture problem became quite serious scoliosis.

Also, say that it comes in varying severities. For example, someone like me could barely be told to be on the spectrum whereas with others it will be immediately obvious.

I agree. With your field and profession, it is really important to know about the communication problems that come with AS.

My son for example, was in the hospital with a broken arm. On one hand, he was asking questions and with the seriousness, and tone he was using, I was told he was 12 going on 32. (about some pretty off the wall stuff, like "what if I need an MRI later on, won't the pins come flying out of my arm?")

On the other hand, he could not communicate he was in pain. He would be just about screaming before they come in, but not effectively communicate that. They would ask, how are you? Response: "good". Are you in pain? "A little bit". How would you rate your pain 1-10? "Um, a 4." I suggested he does not understand scales, so they would ask "how bad is it, a little bit bad, bad or really really bad?". His response, "A little bit bad". I told them "I don't believe that", but they just gave me a look and walked off with no pain meds.

I then explained to my son, "You will not be getting anything for the pain" And he looked at me paniced and asked "why not?" I told him, "because you did not say you where in enough pain to require meds"! Eventually, I encouraged him a little to scream his head off, I did not tell him to start yelling, but when he did I told him "its ok" because I knew that if they did not "see" the pain he was in, there would be no relief.

So, I would adress with them, people with AS may be highly verbal, but not beable to communicate critical information. It will take longer to assess if they know what you are saying, and you should try asking the questions at least two different ways. In my sons case, he should have been asked point blank "Are you in enough pain to want medication for it?" 6 1/2 hours in, he was in so much pain, even morphine was ineffective, I think it was because they never got "on top of it" while it was developing.

Of course, you don't "medicate" your patients, but I am sure you understand what I am saying!

I agree with communication and awareness. Some basic information on noticing signs particularly in children that could be due to nuerodevelopmental problems.

Physical therapy is a broad area isn't it? I believe I been to one in these group sessions for Social Anxiety. It actually highlighted some of the differences I'm talking about above. I was trying to participate in this eye contact exercise but couldn't I told my shrink about it and she did help me with my eye contact and was one of the main thing she used in her diagnosis of AS. Other people who have behavioural and emotional disorders avoid eye contact. But for them it is more about thought patterns and behaviours. They can actually look directly into eyes if necessary without physical discomfort but don't because they want to be passive/submissive. For me looking into someone eyes directly is like looking into a bright headlight, obviously the light isn't there but that is the sensation, so you can't do it for very long.

The exercise was like so: Paired up sitting opposite each other. The guy had to close his eyes Then you’re supposed to look at him. He is then to open his eyes. But immediately I had to look away to the side. I would sort of grimace. Worse is the other way round because I just couldn't open my eyes if I was facing him.

So after telling my shrink about this. She asked me what somebody looking at me made me feel. I answered it doesn't really make me feel anything, it is just uncomfortable looking in someone’s eyes. She then did work with me. Brought in sun glasses. I've increased how long I can look, I can also look at other parts of the face instead. Basically you only really need to glance at people, just so they know your listening. If pushed I could probably look at someone eyes for about 10 seconds max without my eyes going all funny.

I think the signs are important. Many playgroup, kindergarten teachers noticed signs in me. They told my parents but there just wasn't the knowledge about AS so I’ve had to wait till adulthood.

But yep I’ve had run in still do. A lot of people are overworked under paid. I've met a lot of arrogant doctors. Read what it says on the national autistic society (UK) website. It's true. Many GPs have no idea how to deal with either mental health problems nor neurodevelopmental problems. So my advice is ask the parent or adult to push for referrals and be prepared to get some misleading contradictor info.

I am 56 years old and have had Asperger's Syndrome all my life. When I go to a health care professional I wish they would know a few things about me.

1. my senses are heightened because I am in a situation I can't control, and if I get too uncomfortable is when I will exhibit behavior designed to regain control. That is why I might act out and make YOU uncomfortable. Just don't let the experience degrade into this.

2. TELL ME WHEN YOU ARE GOING TO TOUCH ME. I don't need to be ASKED, but I don't know your routine and don't pick up on your body language that you are going to touch me. I know you are going to eventually, so it is not a surprise, just tell me when.

3. BE AWARE that I need a moment or two to process HOW SOMETHING FEELS. So if you are flexing a leg or running a Wharton Wheel on me, my response might not be immediate, and I need to process what is happening in my body to translate it into something you can use as a reaction.

4. Remember, I have MORE EXPERIENCE with AS than you do, and FAR MORE practice living in the NT world. I pretty well know what health care professionals want from me. Consise answers to specific questions. Please be aware I am doing the best I can to comply to your requests.

5. Please don't patronize me. It just pisses me off. (Yank for 'it annoys me very much')

6. Remember we have been to other doctors and other health care professionals and you, lucky YOU, are going to be the recipient of the residue all those past visits. The whole reason you are giving your talk to make Physios aware of us is so you can CHANGE ALL THAT, so make sure you are as good as your word.

7. be kind and caring with out being patronizing and you will have a productive visit.

and good luck and thank you! I will probably never use health care in OZ, but it has to be better than here in The States where they are still in the Middle Ages about AS.


Merle

Good luck on your talk! It sounds interesting.

Definitely mention this, and also as someone else mentioned, that some kids may have a high pain tolerance. When I was twelve, I had a ruptured appendix. Now clearly I was in a lot of pain, but I only mentioned it once or twice (I guess I figured that once I had told them, I didn't have to keep mentioning it), so it wasn't taken into account during diagnosis. Instead, I got diagnosed with mono. A few days later they figured out it wasn't mono, but by that time the infection had spread to the lining of my abdomen and I had an abscess behind my liver. What could have been a simple thing to fix (appendicitis) turned into a month-long hospital stay. Had someone paid attention when I mentioned the pain, they probably would have figured it out a lot sooner. I have NLD by the way, not AS, but the principle is the same when it comes to pain tolerance.

oh, and the obvious thing to say to them: take notice if you are dealing with someone that has AS - doesn't look them at the eyes, talks in a monotone voice - to take an effective approach at them.


hm, this sounded better when I first thought about it

I mean, change the approach if you start to notice he might be an aspie