The diagnostic process: Your experience

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I am about to begin the process toward getting an ASD diagnosis. Or an ADHD diagnosis. Or a diagnosis of something else. Or no diagnosis. Either way, I'll have an initial consultation with a psychiatrist who's experienced with ASDs, and no matter the outcome, I'm looking forward to having some peace of mind.

So I thought I'd take a moment and get others' thoughts on the process. How long did it take? What things should someone getting a diagnosis keep in mind? Do you have any advice for how to prepare?

I've asked some friends and family members to give me some feedback about how I come across externally in the hopes that they'll be able to identify something about me that I haven't. (So far it's been useful: Apparently my inability to make small talk tells others that I don't like them or don't want to talk to them.) I'm also keeping a list of how my personality traits fit into the DSM5 criteria to give the therapist an idea of why I think I might be on the spectrum. I'll gladly take any other suggestions!

As someone diagnosed young, and also as someone potentially diagnosable OFF the spectrum entirely , all I can really recommend is to try even harder than you already have to keep everything open-ended - I only recall a few sessions with a speech language pathologist before my diagnosis was conclusive, and it only affected me years later in the public school systems. What I'm trying to say is that you should try to avoid making any decisions on the basis of your diagnosis in the short term, as well as disclosure of the diagnosis to anyone in a position to leverage it against your interests.

The first time I was diagnosed, it was a complete shock and out of the blue. I had been sent to this psychiatrist for depression and he told me I had Asperger's. I didn't believe him and was quite offended (even though all I knew was it was a form of autism - which in my opinion was someone who sat in silence rocking backwards and forwards in the corner of a room ). I didn't even look into it and back then, there wasn't that much around about it. That was the last I saw of him.

Years later, I wound up in a psych hospital for alcoholism and had to see another shrink there. During the course of our meetings, he also decided I had Asperger's. Then I started thinking "There might be something in this!"

After researching it, it became impossible for me to deny it. I could even see lots of things from my childhood, some of which even I thought were a bit weird, that in hindsight, were symptoms of Asperger's Syndrome! My family also went to great lengths to tell me the psychiatrists were right. Before the first diagnosis, they just thought I was an alien.

My Point Is: You're doing the research to get your diagnosis - I got the diagnosis twice before I even knew anything about it, and still passed with flying colours so, you don't need to do or know anything. Just go in there, tell the truth and be yourself - and if you are Aspie, then you are Aspie and it should be picked up. It's not like you have to study for it. Just be honest

I'm not sure it is something you need to prepare for. You have made a good start actually talking to friends and family. Typically a diagnosis takes place over a few sessions. Your profile doesn't say how old you are, but typically the Psychiatrist will want to get a feel for your background, including your childhood, school years ect. Also he/she will be intersted in how you function in your day to day life - organisation, socialisation, working with others, any obsessive habits. Sometimes, if possible they may wish to speak to your parents, partner or someone else close to you to get their views. You may be asked to fill out Simaon Baron-Cohen's AQ test while you are waiting to go in - you can find it online if you ware interested, but that is just a rough guide, not a diagnostic tool.

I know this isn't a very helpful statement, but I'll say it anyway - the process itself really isn't anything to worry about or to be anxious over.

Good luck.

I worry that you seem to want an Asperger's diagnosis, what if you get diagnosed with something else? Will you accept the verdict or fight for Asperger's?> I can assure you now from my personal experience there is no glamour or exclusivity in having an incurable form of autism. Since I discovered my ASD aged 38, I have not come to the end of one day without fantasising about my ownsuicide as a way out of this condition.

Here's hoping you have a curable condition instead

For the diagnosis, I first needed to go to a psychiatrist for some visits. His job was not to diagnose Autism, but to "undiagnose" possible similar problems like schizophrenia, "normal" social phobia and so on. So you simply talk to him about what kind of problems you have, and he talks to you and asks you question and tries so to get hints of possible other illnesses and so on. When he was certain, that my probs were not based on schizophrenia or normal phobia or other stuff, I got from him the subscription for a diagnose in a autism-facility.

I had there one starting meeting, to tell the doctors about my problems, and based on that they planned with me the necessary diagnostic steps.

So for the first meeting I had to do a list about problems and traits of mine, situations and so on, where I have problems. At this meeting I got as well some papers with questions for my relatives.

At the second meeting, I did various tests, as a face recognition test, typical daily plan of mine, social habbits of mines, behavior in social situations, as well as tests that focused on reading stories that I needed to memorize, so that they were able to tell which things are easier to remember for me, then others.

At the third meeting my mom was with me, to tell about my early childhood. I think that was pretty important, because the doctors were wondering, that according to the answers they got from the written tests from my mum, nothing was weird with me. While after meeting, my "non aware of eye contact"-mum, her answers became more obvious for them. ^^

After that I got after a few weeks the diagnosis papers, with all kind results of the tests, like that typical Aspiescore and so on.

It's a good idea to make a list of what you think might be relevant (symptoms, traits etc.) that you can show/give your psychiatrist. You have only limited time for the assessment. You can use your session time efficiently that way. You can also prevent forgetting to mention something. That was one of the pieces of advice given to me by someone and it helped me a lot.

Funny, a friend of mine who has recently been diagnosed with ADHD said a similar thing to me: wouldn't you rather it was a curable condition?

I'm sorry that your experience of the condition is so bad that you see suicide as the only way out. I can't imagine feeling that bad, albeit partly because I have a horrendous fear of death and dying.

I'm also not "officially" diagnosed. Yet. But I'm comfortable with the aspie label. It's not something I aspire to, and it doesn't solve my problems by any means, but it does tell me what my problems are, and some of those are surmountable. As a senior programmer, my bread and butter is diagnosing issues, fixing them where possible, and finding workarounds where a fix isn't possible. I may never be able to comfortably touch (or even think about) certain synthetic fabrics - but that's OK because I can use other fabrics. For example.

Diagnosis isn't the end of the road, it's the start of a journey. I'm aware that it's different for everyone, but for me it's like someone just switched the light on. I don't use my condition as an excuse but it gives me a different set of benchmarks from NT people. It also gives me some fantastic strengths such as the ability to think laterally (OK, sometimes TOO laterally).

Don't be frightened off by comments of suicide - if your life is bad enough now, you would probably be thinking about it already! It's not as if a diagnosis of anything is suddenly going to make things worse and make you want to kill yourself.

It's a spectrum and some have more difficulty with it than others. I personally think the positives well outweigh the negatives. I manage the negatives and relish in the positives - like the ability to microfocus/hyperfocus, having special interests that keep me satisfied pretty much all of the time, being able to see solutions to problems neurotypicals can't see because our brains are wired differently. Having animals love me more than they do NTs. The list goes on...

If someone came up to me and said "Hey, I've got a cure for Asperger's!", I'd tell them to bugger off

Life is what you make of it. If the world gives you lemons, make lemonade!! ! and at 46, I've had a lot of lemonade


The only thing I will agree on though is you do seem to want a diagnosis of Asperger's. Why

I wasn't diagnosed until I was 11. But early on my parents knew something was different about me. At age three a speech therapist suspected Aspergers so we went to a neurologist to get it confirmed but he said no. So my main diagnosis through those years was ADHD and OCD. Then at age 11 I went back to that neurologist and he confirmed I had Aspergers. Then I went to another doctor who also said I had it. So that is how I was diagnosed.

I would accept it. I'm looking for clarity and certainty at this point more than an Asperger's label to attach to myself. I've considered a number of different possibilities--ranging from other diagnoses to no diagnosis at all--so I'm open to almost anything at this point.

I've been uncomfortable with outright self-diagnosis for this very reason. the closest I get is basically, "I might have AS." I don't want to misrepresent myself and claim to be something I'm not in case I'm wrong.


Thanks. I'm actually not anxious about this at all.

My diagnosis was split into two parts, one where the psychologist just sat down and talked with me and my mom, and one with the actual test.

The first day I went, she just asked my mom and I different questions about my behavior and stuff. General aspie questions, like about sensory issues and social issues, and stuff like that. I don't think that took too long.

The second day I went there was my favorite, it was one on one with the psychologist, and she did different things with me that, to this day, I'm still not sure how they related to autism.
Some of the tests included putting blocks together to copy a shape, reading a short picture book and summarizing its plot, and picking a picture in a group that didn't belong. There were also different memorization things, like, she would repeat a combination of 3-10 letters or numbers and I would say it back to her as best as I could. The combinations got longer as they went on, and sometimes I had to say them backwards, or in alphabetical order.
She also had a bunch of little objects I had to make a story/scene with.
There were more tests, but I can't really remember them right now. Those are the tests that stood out to me.

I wouldn't be nervous if I were you. If your diagnosis is like mine, it's not anything to worry about. Just do your best at the "tests", and be as accurate as possible about stuff when she's interviewing you