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Why is it made so hard to get a diagnosis as an adult?

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This is the third time I am attempting to get a diagnosis on paper, and I am about to give up again. The reasons why I find it so hard are as follows:

1.It is incredibly confusing who will just treat it and who is actually qualified to make a diagnosis. Usually I find out after the call back, which is many weeks after I attempted to make contact.

2. Office hours are very limited and usually I don't get anyone on the phone when I call.

3. Having to call people is something I am highly uncomfortable with, even more so than speaking to someone in person or over email. Especially when they get snappy I tend to get intimidated and avoid the phone for days.

4. Leaving phone messages is even worse. And getting called back too, because it can happen at any moment and there is no time to mentally prepare.

5. When I did receive call backs it was usually in an inappropriate public location, like in the cafeteria at university or on the bus, and because it took them weeks to call back, i dont want to refer the phonecall, so i ended up answering very private questions in a public place.

6. Most don't diagnose adults.

7. Some want a referral from a GP or psychiatrist prior to making a diagnosis.

8. Waiting lists are anything from 3 months to 1 1/2 years.

9. Some want to set up multiple intake interviews, and sessions, each of which I would have to be waitlisted for again, and also drive many hours for.

10. And after all that, I hear from many people that they weren't even taken seriously by psychiatrists and told they were imagining things and jumping on a trend wave.

It is incredibly discouraging. Nobody would invest so much time and effort just to get a trend diagnosis. People want the diagnosis so that they can receive help from a specialist, aid at work or school and government programs, or learn to become happier and more capable with the mind that they are given. Even if its not aspergers, it might be something else, and the person still needs help!

The whole process is so overwhelming and stressful that I feel I would need a social worker just to help set it up. But of course I cant ask for help since I don't have a diagnosis. I couldn't get it as a child because my parents never gave a s**t and now I am a young adult, struggling with getting my life on track, and I can't even seek support from disability groups. Right now, I am looking to get it done in another country to speed up the process.

Has anyone else experienced the frustration? How did you deal with it?

And as a follow up question:

What European country makes it the least complicated and straight forward, in one session?

From my personal experience, both Germany and the Netherlands suck. I am considering flying to England. They appear to have a lot of support for people with autism spectrum disorders and learning difficulties.


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Edit: I cannot get a referral because in the Netherlands you have assigned doctors, I was assigned to the campus health center, and the campus therapist is this 22 year old frat boy who told me "I'm confused, if you trouble interacting with people, why don't you just go party?" 

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It can be incredibly frustrating and some people have to wait years before they get a diagnosis. Don't give up on it and keep pushing them, often they need to be under pressure before they take action. I can't speak for the Netherlands, but in the UK it is possible to get a private diagnosis without a referral, though I'm not sure whether such a diagnosis would be valid in the Netherlands. Getting a diagnosis on the NHS can be a very long and difficult process.

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Depending on where you are from, you may not be entitled to (free) NHS treatment. Even if you were entitled, you would need a UK address and referral from a UK GP

I don't know about psychiatry but in my profession, we still require a GP referral (or equivalent) for private practice

In the UK, there is little help for adults with ASD - all the help and resources are aimed towards children and young people in further education. Once they leave the education system, they are effectively on their own.

What does having a diagnosis effectively mean for you?

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I found getting a diagnosis pretty easy (though not quick) because I'd already filled out the GARS questionnaire about my son, which makes it pretty clear what they're looking for. I wrote a massive letter to my GP describing everything I thought was relevant, including views of my wife, mother and friends, and categorised it into the relevant sections (sensory, communication, social). I met with the GP and was really nervous, which only served to enphasise my symptoms. She refered me without question. I got an appointment a couple months later with a specialist who spoke to me for an hour. It was hell as he kept changing subject which is something I find a big headache. He then wanted to see me a second time. He said to write down anything I thought of that might be relevant (I catalogued all of the incompletey answered questions from the session and answered them) and he would phone my mum to see what I was like as a child. So, another 6 weeks later we met again, and he had a student with him too, and I brought my wife along, as he'd also said that might help. He said I was on the cusp of diagnosis, but hearing what my wife said, he made the diagnosis. Basically, it took a very long time, and was an unpleasant experience, and could have gone the other way, but didn't because I called for backup. T

he most important things I did were write stuff down, make a case for how a diagnosis would positively impact me, and bring other people along.

Sorry, I'm not sure if that's at all helpful to you.

I live in Scotland, by the way, and I got my diagnosis last week.

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