Second Thoughts On Diagnosis!

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Has anybody ever had second thoughts about getting a diagnosis?

I was all prepared to blog about how I had contacted the Autism services agency in my state and had yet to hear from them. Then on March 9, 2011, I got an email from one of their Admissions Coordinators with some information to complete. They say they diagnose children and adults, but most of the information seems to be geared towards children and the parents of children with Autism. The paperwork just sends my mind reeling. It became confusing to continue reading the material and I just left it sitting in my Inbox.

This is the text of the email:

http://www.touchpointautism.org/LinkCli ... d&tabid=64

I can’t link to the Assessment Packet (PDF).

Now I have a lot of fear surrounding getting the diagnosis. This is an Autism agency! What if the person who assesses me decides that I don’t have any form of Autism based on his or her perception of me? Even if I fit the profile, or whatever, the person I would be assigned to still makes a judgment based on his or her perception. I feel like then, I’m just a loser and an as*hole who can’t get it together. And then what? I mean, how do you get a second opinion on whether or not you have an ASD when an agency that specializes in Autism says they don’t think you have it?

Now that some time has passed, I am ready to look at the paperwork again, but the fact that it’s oriented toward those who are children NOW is still confusing for me. And I still feel like I’ve backed myself into a corner. I’m damned if I chicken out because I’ve spent so much time on WP learning about ASDs and identifying with the experiences of others. At the same time, I’m damned if I go for the diagnosis and they say NOT! I will have done myself more harm than good and will feel silly for ever joining WP in the first place!

I can trace the patterns of my life back to childhood, but there are so many other factors to be considered. Then they claim to do the assessment in about an hour! My eyeglasses took longer than that – and I went to LENSCRAFTERS!

Please help.

$400 for a one hour assessment? The fast food of diagnoses at a premium price.

Is this a private organization? Non-profit or profit? I'm an old cynical sour puss at times and I would wan to know as much as possible about them before putting my $400 on the table.

It is THE Autism agency in my state! It's called TouchPoint.

At least I found a clause in the information they sent stating that I can attach any additional information I feel would help. I'm going to print out my posts from this site - many of which may help in their determination. They describe my present and my past.

This isn't the time for me to rant about privatised health care, but seeing a post like this just enrages me!

Mental Health is something that shouldn't be privatised, damnit.

If you were in the UK it would be no problem. But that isn't what you want to hear.

When I was diagnosed, there was a series of different steps. I was referred to the diagnostic service in my country having been already in the care of the mental health service for my depression, during the course of which they suspected I had AS and so, referred me to the diagnostic service. First of all I went to speak to a speech therapist, who agreed that I had no real problems there. Then after that I was to be observed at work by a specialist to see how I interracted with others, but I turned this down. Then I was to spend time amongst already diagnosed individuals to see how I interracted, but I also turned this down. Then I had an appointment with two doctors who asked me general questions and asked me to tell them a story from visual cues such as a book without words, just pictures, or from a random assortment of objects. After that, however, there was no need to continue because that session alone was enough for my diagnosis.

However!

My point was, generally they do lots of different things just to make sure. To be perfectly honest, during the speech therapist part I was asked some preliminary questions which I lied to, at the time I didn't think I was autistic and so gave answers to make me appear neurotypical. In the next session I confessed to this, which she laughed off, telling me that " a lot of people do that, but we can tell anyway".

So, my point is... Don't go for a single session, go for one of the extended things. There's not just one way to find these things out, and good luck.

Health care shouldn't be controlled by Government. That is unless you like Big Brother making decisions about your legal rights because of what some quack under qualified Doctor who is a state employee says about you.

Do you really think a public employee has your best interest at heart over a qualified professional who actually has to compete in a market place for patients. If the government says - Aspies don't exist....Poof they are gone. If the Government says Aspies exist but each one we Identify needs to be locked-up. Poof in a government controlled system you are locked up.

Private Doctors and private care is private.

This 400 dollars doesn't even include an evaluation by a Doctor... Use your ability to shop around while you still have it and find a real professional not a state approved/state funded "professional".

TouchPoint is a private agency, but they seem to be the main agency dealing with autism. Across the river there is the Illinois Center for Autism. Both are private agencies that operate probably from state and Federal funding.

I just went back and read Gideon's statement at the end where it says "state-funded professional."

So it seems like I was on the same wavelength as those who have posted here thinking that I should go private. But that would mean going through my insurance provider from my job's benefits. I don't think TouchPoint even deals with that. And at least there is the benefit of knowing that AUTISM is ALL they deal with...in kids and adults.

I feel a lot better thinking about it overnight and thinking about how I can attach additional documentation after reading the material a little more thoroughly. The 300-odd posts that describe my past and present should help a great deal. And if things turn out in a way that I feel the need for a second opinion, then I will simply take the route of going to someone else.

This doesn't mean, necessarily, that if they say there's nothing wrong I'll just go on a wild goose chase until I get the desired response. But if I feel like the examiner wasn't thorough in his or her conclusion by means of a seemingly flimsy conclusion, I will seek other counsel.

There are a number of things from my childhood (such as comments made by teachers and counselors on elementary report cards) that one can draw inferences and conclusions from leading to the discovery of some kind of problem - be it an ASD or other problem. I don't think, though, that those records are even on file anymore.

How about I'm getting off here to find out.

LOL...the LENSCRAFTERS of Autism as the case may be!

I know someone who works there who speaks volumes of great things about the organization!

I share your feeling somebody ought to study us closely and try to figure us out, but I doubt those posts will get much more than a passing glance. I once printed out a couple of pages from here and highlighted *one* post of mine that a doctor did later consider, but then he just came back with some kind of statement about my having some kind of fixation on Aspergers Syndrome.

Not much more than a passing glance may, in fact, be right since it's Autism diagnosis WHILE YOU WAIT! LOL

Had to edit this post: If they SAY you can attach additional documentation, they'd better DARN WELL pay MORE than a PASSING GLANCE at it - especially since it goes into childhood history and things like how I deal with eye contact and sensory issues.

It's like somebody said in another thread about how you have to go into diagnosis assertively pointing out aspects of yourself and challenging the examiner against the diagnostic criteria when s/he goes down the road of generalization and oversimplification (to the best of my remembrance of what was said).

Last edited by Surreal on 22 Mar 2011, 10:02 am, edited 1 time in total.

I've already downloaded the assessment paper of the "Autism Foundation" in Hungary, after speaking on phone with a kind lady. This foundation requires only to pay a fragment of the full cost. This paper is intended for parents having an autistic child. I printed out the whole 45 pages, and asked my parents to help to complete. It's a rather slow process, since answering the questions brings up long-faded memories. My parents look at me as their always woody child, and I have to insist on continuing the process if I want to be assessed. The expected waiting time for assessment is 2-4 months.

Yeah. This was my first reaction



This is the important thing. Whether public or private, it is the quality of the service that matters. If after doing my homework I was comfortable with the organization, I would have no problem paying the fee (well, other than HAVING the fee to pay). But asking someone that works there is not an unbiased source either.

Well, do you obsess on Disney songs?

I agree - I have no clue what the hell they could possibly learn in an hour. The assessment is aimed towards children.

Maybe try calling/emailing back and tell them they linked you to the wrong assessment page. Tell them you are looking for the ADULT assessment page and see what they say...
The answer may be, at least, entertaining. Or, it may give you a better idea of exactly how well versed they are in adult dx.

In the UK all practicing doctors are qualified professionals. Very highly qualified.
This is one way of avoiding wealthy, private medical corporations getting into a scrabble for money instead of dealing with the patient's best interests. You know - ambulance-chasing and all that stuff.

I have no idea where you get these ideas from, and this doesn't remotely describe anything I recognise in the UK.
But I'm not wearing my tinfoil hat at the moment, so maybe 'they' are controlling my mind.

Exactly! Thank you. As for everyone saying that it's very child orientated - I was referred to Northern Ireland's autism diagnostic service by the Child and Adolescent Mental Health Service (I was 17 at the time) and so when they recieved me, they were expecting me to be a child. They laughed it off as a mistake and were fully able to diagnose me. It doesn't really make any hinderances. I think you are all really... Underestimating the ability of these doctors.

But... Then again, perhaps that's just because you aren't in the UK.

Yeah they are all, every one of them Highly Qualified and Professional. Give me a fracking break. Such a sweeping statement is almost always BS.

http://www.independent.co.uk/life-style ... 83312.html

Ambulance chasers are Lawyers. Ambulances take patients to the doctors no need to chase them down.

You obviously don't follow politics very well if you don't think a Government that controls something like say all medical practices or poverty statistics can't make sweeping changes due to political expediency. I guess if you trust your government that much you might be mind controlled. I don't know, I cringe anytime someone says, "I'm from the Government and I am here to help you." That is the universal sign that you are about to be bent over and pounded in the a$$.

Y'know, there's a big problem with finding stuff online to back up negative opinions, because it's about all anyone ever bothers to post. Newspapers just love a horror story too - good news simply doesn't sell the ads.

Simplified to the point of being utterly ridiculous.