Is going through the diagnosis process worth it?

Hi katfish,

Reading your post is like reading a description of me. I attended an Autism training day and discovered that was me - wrote down all my behaviours, matched them up to the definitions, realised I had it. It turns out that having autism does not mean you are Rainman, which is why I never suspected I had it. Movies have a lot to answer for!

It took 2.5 years to go through the diagnosis process (I was 38 when I finished it). The thing I wanted to get out of it was to stop feeling in limbo. Once I knew I had it, I wanted to get the diagnosis as proof. Until then, it wouldn't be official. Having a clinical psychologist assess me and say "yup, that's you" would take me out of limbo and help me define, come to terms with, and understand myself better. I already understood myself well, but having a definite "root cause" of how I think, feel and act for some things, and corroborated by a professional, I thought would help me. It would help me explain myself better to myself.

Additionally, I thought it would help at work. Twofold: a few years ago I got a bad rating in my annual appraisal, and I wanted to prove to my boss that he was wrong in his assessment (I have a strong sense of right and wrong, and he was wrong); secondly to use as proof that I have extraordinary abilities in certain areas and terrible abilities in others, namely "people" and "organising/coordinating". I have a one-pager that describes me perfectly that the psychologist created for me, and means that people give me problems that no-one else can solve (which I enjoy doing), and shield me from the social/organising aspects. "Coming out" as someone with autism to my boss had a very positive effect, because here was real proof that I think in a very different way to everyone else, and that I thus provide great value to the company. Since I told him, I've been rated as "Outstanding" in my annual appraisals, and he says the quality of my work, and my ability to create value for the company, is self-evident from the work and from feedback he's got from others. It's like a badge of recognition and helps me get the work that makes the company perform better, whilst not giving me the stuff I would struggle with. I don't get assigned any types of work I struggle with now, where I would have to interact a lot with others or go into a chaotic team; at the same time I drive forward and define new work and solve the unsolveable, so everyone wins and I'm seen to be excelling.

I didn't find the Diagnosis/Assessment process stressful. I only saw one clinical psychologist (twice), one office worker (once), and my GP (once).

Here's how I did it:

1. Spoke to my GP, who told me what the policy was in my county. They had to submit a form to the Autism provisioning organisation, then the Autism people would get in touch.
2. I got a copy of the form and filled it all in myself, including examples and about 6 extra pages :) . I gave this to my GP and said "send this off, please".
3. I got a letter from the Autism people requesting a first interview.
4. I turned up and spent an hour with a kind office worker, who just chatted to me about what I'd put in the form and then made some notes. This was basically a screening process to see if it sounded like I have autism, so I should go through to the next stage.
5. They said it would take 18 months before I'd see the psychologist because I'm an adult (not much provision in my county) and I'm not really struggling with anything right now - like, I'm not unemployed or homeless or depressed.
6. I waited 18 months then e-mailed them to say "it's been 18 months"
7. They e-mailed me with a date for about 4 weeks time to go see the psychologist for my assessment.
8. I went to see the psychologist. She was very friendly, we were in a quiet room, she asked me questions for about 2 hours and we did a couple of tests - I had to read a picture book without any words and describe what I thought was going on. At the end she said "I think you might have it, but I need more information about your early development." so asked if she could speak to my mum. I said yes, but do it by letter not by 'phone (because, haha, it's genetic and guess who I get it from)
9. The psychologist lady 'phoned me up a few months later to say she'd received the responses from my mum and there was no indication of early developmental problems, so she wasn't sure I did have it. She asked if I'd like another meeting with her to go through the results and I said yes.
10. I went to see her a few weeks later. This time I told her exactly why I thought I had it, because she hadn't asked this before, and then she suggested we do some more mental tests. She gave me series of numbers to recite backwards, I had to manipulate some coloured bricks as fast as I could to match the picture, and I did some maths problems. I think it was called the WAIS test which measures different parts of your cognitive ability. I enjoyed doing these, it was fun, but maybe that's just me! I also told her she should speak with my sister, because my mum wouldn't have noticed anything "abnormal" in my development since it would all have been "normal" for her.
11. I received a letter from the psychologist in December last year saying I had it, that was my formal diagnosis. The tests had shown peaks and troughs in mental ability (for a "normal" brain, the results are evenly distrubuted, and my results ranged from the "very high" to "above average"), and my sister's testimonial and observations were consistent with someone who has an AUtistic Spectrum Disorder. Me and my wife had a good laugh about some of my sisters answers - I couldn't remember some of the occassions she mentioned but it definitely sounded like me!

Declaring your diagnosis is completely optional - you can get it done but you don't have to declare it at work or to the police or anyone at all. For me, it helps when I need it to, and I use it when I need it to, and it's helped family life because now people understand what I can do, and what I can't.

I hope that's helped.

Hi katfish,

Reading your post is like reading a description of me. I attended an Autism training day and discovered that was me - wrote down all my behaviours, matched them up to the definitions, realised I had it. It turns out that having autism does not mean you are Rainman, which is why I never suspected I had it. Movies have a lot to answer for!

It took 2.5 years to go through the diagnosis process (I was 38 when I finished it). The thing I wanted to get out of it was to stop feeling in limbo. Once I knew I had it, I wanted to get the diagnosis as proof. Until then, it wouldn't be official. Having a clinical psychologist assess me and say "yup, that's you" would take me out of limbo and help me define, come to terms with, and understand myself better. I already understood myself well, but having a definite "root cause" of how I think, feel and act for some things, and corroborated by a professional, I thought would help me. It would help me explain myself better to myself.

Additionally, I thought it would help at work. Twofold: a few years ago I got a bad rating in my annual appraisal, and I wanted to prove to my boss that he was wrong in his assessment (I have a strong sense of right and wrong, and he was wrong); secondly to use as proof that I have extraordinary abilities in certain areas and terrible abilities in others, namely "people" and "organising/coordinating". I have a one-pager that describes me perfectly that the psychologist created for me, and means that people give me problems that no-one else can solve (which I enjoy doing), and shield me from the social/organising aspects. "Coming out" as someone with autism to my boss had a very positive effect, because here was real proof that I think in a very different way to everyone else, and that I thus provide great value to the company. Since I told him, I've been rated as "Outstanding" in my annual appraisals, and he says the quality of my work, and my ability to create value for the company, is self-evident from the work and from feedback he's got from others. It's like a badge of recognition and helps me get the work that makes the company perform better, whilst not giving me the stuff I would struggle with. I don't get assigned any types of work I struggle with now, where I would have to interact a lot with others or go into a chaotic team; at the same time I drive forward and define new work and solve the unsolveable, so everyone wins and I'm seen to be excelling.

I didn't find the Diagnosis/Assessment process stressful. I only saw one clinical psychologist (twice), one office worker (once), and my GP (once).

Here's how I did it:

1. Spoke to my GP, who told me what the policy was in my county. They had to submit a form to the Autism provisioning organisation, then the Autism people would get in touch.
2. I got a copy of the form and filled it all in myself, including examples and about 6 extra pages :) . I gave this to my GP and said "send this off, please".
3. I got a letter from the Autism people requesting a first interview.
4. I turned up and spent an hour with a kind office worker, who just chatted to me about what I'd put in the form and then made some notes. This was basically a screening process to see if it sounded like I have autism, so I should go through to the next stage.
5. They said it would take 18 months before I'd see the psychologist because I'm an adult (not much provision in my county) and I'm not really struggling with anything right now - like, I'm not unemployed or homeless or depressed.
6. I waited 18 months then e-mailed them to say "it's been 18 months"
7. They e-mailed me with a date for about 4 weeks time to go see the psychologist for my assessment.
8. I went to see the psychologist. She was very friendly, we were in a quiet room, she asked me questions for about 2 hours and we did a couple of tests - I had to read a picture book without any words and describe what I thought was going on. At the end she said "I think you might have it, but I need more information about your early development." so asked if she could speak to my mum. I said yes, but do it by letter not by 'phone (because, haha, it's genetic and guess who I get it from)
9. The psychologist lady 'phoned me up a few months later to say she'd received the responses from my mum and there was no indication of early developmental problems, so she wasn't sure I did have it. She asked if I'd like another meeting with her to go through the results and I said yes.
10. I went to see her a few weeks later. This time I told her exactly why I thought I had it, because she hadn't asked this before, and then she suggested we do some more mental tests. She gave me series of numbers to recite backwards, I had to manipulate some coloured bricks as fast as I could to match the picture, and I did some maths problems. I think it was called the WAIS test which measures different parts of your cognitive ability. I enjoyed doing these, it was fun, but maybe that's just me! I also told her she should speak with my sister, because my mum wouldn't have noticed anything "abnormal" in my development since it would all have been "normal" for her.
11. I received a letter from the psychologist in December last year saying I had it, that was my formal diagnosis. The tests had shown peaks and troughs in mental ability (for a "normal" brain, the results are evenly distrubuted, and my results ranged from the "very high" to "above average"), and my sister's testimonial and observations were consistent with someone who has an AUtistic Spectrum Disorder. Me and my wife had a good laugh about some of my sisters answers - I couldn't remember some of the occassions she mentioned but it definitely sounded like me!

Declaring your diagnosis is completely optional - you can get it done but you don't have to declare it at work or to the police or anyone at all. For me, it helps when I need it to, and I use it when I need it to, and it's helped family life because now people understand what I can do, and what I can't.

I hope that's helped.