Aspies For Freedom

I am not a member of this board - I too found it through Fark.com so can / will not speak on behalf of the regulars. But as someone who had a severely autistic niece who I was very close to before I moved away, I am going to respond...

I would also like it noted that my first wife (she died of scleroderma complications) was a Chartered Psychologist & very good at her profession...

The first thing you can do is never ever consider them as "clients" - they are either people who are forced to see you or people who come to you for help - the common description is that they are people...

Almost all "professionals" are book smart but people stupid - almost all professionals believe they are superior to their "clients" because the client does not have a degree on the wall.

People are "skeptical of diagnoses they receive from professionals" because the professional never really listens to the person who actually knows what is happening to them.

I make that statement in the previous paragraph because my first wife's doctor told her that the fluttering in her lungs was from "nervousness" of attending my family reunion - he apologized to me after we shipped her body home.....

There is no such thing as "a quality product" - that terminology is disgusting.... There are people with individual concerns & unique challenges they are facing.

Forget about the technical knowledge & cases you read about in University - forget about which drugs work in most situations - ask your "client" questions & listen - actually listen to them...

My present wife was diagnosed with Lupus a year after we married - she has a Saint of doctor who actually phones every now & then to chat to see how things are going. My wife (while a patient) is not a client - she is a person with health challenges...

Jos - the fact that you posted asking for feedback puts you ahead of 90% of the professionals - please do not disregard my input due to my blunt responding style......

Hi Jos:

Figured I'd come from a slightly different point of view, as I'm an occupational therapist in a public school who happens to work with kids with all sorts of differences (yes, I HATE saying it that way, not sure how else to phrase it) and a number of those kids are on the spectrum.

When I was in school for OT, I was fascinated with autism and did a bunch of research on it. Continued that after graduation (I tend to get obsessed with things *grin*) on my own. But book knowledge only takes you so far, especially when most spectrum folks are SO different from each other.

Which brings me to my point. Whenever I meet a new aspie kid, or one with autism, I spend the first few sessions just getting to know them. It's kind of hard to explain; it sorta means using whatever I need to (speech, pictures, movement, silence, simple observation, toys, computer, whatever - as long as it's legal!) to connect and make the kid comfortable. No connection means I'm wasting both our times.

Once we do connect, I follow his or her lead. Yes, there are certain goals I am supposed to help this person achieve, but there is more then one way to get there. For a concrete example, if I have a kid who has writing goals and hates writing I might look for writing alternatives. Like a FlyFusion pen, or the computer. Or text to speech. Or whatever it takes to make em independent and doing what they need to (keep in mind I work in a public school; there are certain things one is expected to be able to do when one graduates).

It's not easy, but for me, the most important thing is to step back and learn from whoever I'm working with (as opposed to trying to "fix" problems - sometimes what YOU might see as a problem is not a problem for the person you're working with!). I'm not saying ignore the issues that brought the person to your door, but keep an open mind; sometimes unconventional ways of doing things turn out to be the best ways.

Sorry this is such a mish mosh; sometimes my ability to be clear takes a hike. Let me know if I can clarify anything.

Fellow Farker,
Alli

I think that Batman55 summed it up when he said that our bias comes from personal expearince with therapists. They tend to badly misinterpret our motives and actions. In addtion they tend to consider AS a mental disorder and look for mental disorder type reasons for our actions. For example, I am covering my ears and looking up because I want to stop the noise of that buzzing light bulb, not because I have voices in my head telling me to.
The use of the term mental disorder also offensive because it stigmatizes the person who has it. We like to pretend mental illness does not bother people but it still does. To put people with AS in the same catoegory places us at a huge disadvantage when we try to fit in to society. The people we meet may not have heard of AS, but you if they hear "mental disorder" you can bet we will be considered no more sane than the guy at the street corner who yells at things only he can see.    

I once tried going to an AS support group (that name should have tipped me off) that was run by a therapist. I could not understand the way she was so carefule and placating around me and the other people with AS. I finely realized she was afraid of us and was "walking on egg shells" because she did not know what we were going to do.  

jos11, that is very nice of you to ask what could be done to make AS people more more comfortable with utilizing mental health resources. I don't think I any of the professionals I have seen because of my AS has asked if I was comfortable working with them. Here are some things I think you could or should to make us more comfortable:
Explain your own thought process to you client (person you are helping). Why do you think what you do about the issue? What led you to reach this conclusion? this would allow the person with AS a chance to say "no thats not why I did that/think this.
Do not treat the client as if they are defective, many of us already feel this way. Treat us as equals!!! some of us are quite smart and if you talk down to us we will shut you out conpleatly. As you get to know a person with AS you should be to tell what their level of understanding is.
Continue working with people with AS and autism you are going to learn far more about us that way than you will sitting in a classroom.

Josh,

The fact that you recognize that every person is unique is a great first step. Put that into practice & you will be more popular & more appreciated than most of your peers - at least by those who you want to help......

Hey, I've PMed you, but not received a reply. I hope you find what you're looking for

I ask my son to look at mom but I dont make him do  it for more then a second  I just like to look at him . I didnt realize it was stressful. I do know about insomnia.My son never sleeps all night - he wakes up and if we're lucky he'll go right back to bed with us though. If not like this morning he's up at 3 am and so am I . Its 8:30 and I"m ready to nod off I know he cant help it and I try not to get frustrated but after a week of two hours of sleep a night it gets hard.

Your experience is on paper Josh.

Hi Josh,
Thanks for being interested in what we have to say.  As others have said, it's a pretty good start.

I'm new here and to the whole diagnosis process. My six year old son is waiting for assessment for autism and has recently been assessed by Speech and Language Therapists who will be seeing again for fuller assessment.  When we saw the SLTs for the triage assessment it was very helpful.  One of them played with, spent time with my son to see where he was at, while I went through a questionaire with the other SLT.  Process worked well for me, it focussed on our history, what the problems were, why they were problems, who was most affected - me or my son, what my fears were if no help available and what form I envisaged that help taking.  The whole thing was focussed on relationship and relating.  There was no hint of us being dictated to or told what should happen.  We were very much treated, and valued, as individuals with strengths and weaknesses.  There seemed to be two key issues - 1. how my son could be gently helped and encouraged to improve his areas of weakness, eg, pragmatic language skills and 2. how the school and others could change their own way of doing things to let my son be himself.  All very positive.

My son's school and I are of the, informed, opinion that he is Asperger's and I would be quite surprised now if that were not the official diagnosis - but we'll wait and see.  The main thing is that I and the school have a greater understanding of who he is, and why he has certain traits, mannerisms and dispositions.

I say he "is" rather than "has" Asperger's deliberately because that is how I see it.  I'm not looking for "treatment", but rather understanding, help and where necessary, accommodation.  If he, at any stage becomes, for example, depressed, then yes I would want him to be treated for that if appropriate, but not for the Asperger's any more than I would want to have him treated for being brown-haired and blue-eyed.  It's just another aspect of who he is!  My lovely wee, aspie boy!

I enjoy AFF because it's not all doom-and-gloom, why did this have to happen to me? and how do I fix it? misery. but more, here we are, this who we are/Iam, take it or leave it!  At least that's how I see it!

Hi Jos, I became aware I was AS when my son was diagnosed.  I am married and run one company and work for another.  

I do not so much object to your wording but the terms mental disorder reflect in my opinion what you are thinking.  I find your attitude and that of some other NTs in the health professional sphere who are interested in helping  - lacking.  Perhaps if you really want to  genuinely help people then roll up your sleeves and get down in the blood and snot where its happening then in time you would see that Aspies are not mistakes and although different this does not make them wrong.    

I beleive that we are not the same we are all different speak to Tony A down under he puts it better than me.  

I don't mean to be negative - but this attitude stinks. Imagine if someone doesn't like your personality / character type so people with "normal" brains decided to try and abort babies like you.    And Joss people talked of curing you how angry does that make you.

I really am not some fruit I hope that you can see where I am coming from I don't do idioms and inference.

Okay Josh,

Time to get back to your original post - the reason you are interacting here....

Have you learned anything - to help on your quest to make people "more comfortable with utilizing mental health resources"? If so, what?

Don't you just love tests............

Hi Edmonton,

Thanks for getting the thread back on track. I just reviewed every post and it seems like the thread was good until self-diagnosis came up and then it got derailed. To keep it on track, I will no longer speak about self-diagnosis.

To summarize what I have learned:
- My choice of words is important
     - Do not use use the terms "disorder" "client" "product?"
- Respect individuality
- Keep my education up to date
     -This includes learning from individuals with AS not just books
- Ask when I need clarification
- LISTEN
- Respect communication preferences
     - Nonverbals (e.g.,eye contact)
     - Verbals (e.g., do not focus on feelings)
- Treat individuals I assess as equals
     -Minimize us vs them mentality
     -Recognize my limitations
- Keep an open mind
     -Respect individual wishes and preferences
     - Let the client set the pace
     - Consider unique approaches
- Understand negative experiences with past professionals may cause frustration and suspiciousness
- Take meds into account when considering symptoms
- Allow more time in session

Some of you may be surprised, given your experiences with psychologists, to find out that many of these suggestions are heavily emphasized in my training. Even with training, most of these practices still require careful practice and attention. Thanks again to everyone who has answered my original question.

I can see the discussion has run its course now. Thank you to everyone who added to this thread. I will be checking for comments periodically and will answer all PMs to the best of my ability. I look forward to integrating all of the insightful suggestions into my future practice. Oh, and in case anyone wonders, I will not use any of the content of this thread for research or publication purposes.
Thanks again,

Josh

What do you mean by clients, eh?. we are not lab rats nor are we customers we are PEOPLE. We come to you guys because we are either forced to or want help and advice, then you lot turn round and you are SURPRISED that some of us are suspicious!. I know that i shouldn't start any arguments but, come on It seems so pathetic the way you NT's think sometimes (to me anyway). Gees.

You guys, that's not fair.  All he did was use the language he was taught and the knowledge he was given; it's to his credit that he came hear to learn what the reaction to that language and knowledge was and he shows all signs of adjusting accordingly.