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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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Nesf

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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collectingrocks

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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jicawi

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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TheWizardofCalculus
On 9/22/2017 at 10:30 AM, test said:

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.

None of what I'm going to say is helpful to the issues you're facing, but to at least give something like an answer to the core systemic problems:

a.) The medical knowledge is lacking.  I mean, all of the money that gets thrown into autism largely seems to be chasing after this well-intentioned idea that we're close to a "cure" for something that people can't even define.  And that last bit is basically the problem.  Hundreds of millions have gone into autism research, but not much has gone into understanding it broadly.  I mean, look at how many people think autism is a condition that only affects children.  And like, it's incredible how recently researchers have actually understood even the most basic things about how the symptoms appear in women, that sensory issues are typically a major part of ASD, etc, etc.  Like, because there's like zero people with ASD actually studying ASD and contributing to the research, it means many medical professionals can keep on repeating mantras regarding from the 1950's without real resistance within the medical community.  So yeah, because parents fund ASD research and they are obsessed with "fixing" their children and making them "normal", effectively zero money goes into understanding how ASD appears in adults.  I'd be willing to bet that the medical community would be fucking stunned past recognition if they could sample the full range of adults with ASD, at what they can do, what they have accomplished, etc.

b.) It's also partially our faults.  I don't mean you and me as individuals; I mean the group of people who can pass well enough that we sort of get a choice to hide or to not.  Because 99% of the time, it's easier to pass and just deal with all of the negatives that that entails.  Every time an autistic person acquiesce, beats themselves up for being different, reacts to most situations making sure to seem normal --it implicitly complies with the notion that autistic people act a "certain" way, and if you don't then you aren't autistic.  It's also due to the relative nascence of psychology and psychiatry; so little is known about human psychology, what affects it, how it works, etc.  So when people chose to hide in plain sight, doctors don't know anything about them and their lives.

c.) Politicians defunding medical care.

 

It's extremely frustrating though.  Realistically, I don't know how these issues get fixed without organizing and a serious effort at activism.  That's particularly hard if you don't have an official diagnosis (then you can be freely ignored, and are potentially putting your livelihood/friendships on the line if you have a job), but still just as hard with the diagnosis because now you're publicly identifying yourself.  It'd be great if there was some better, not child-associated things (like flags, symbols, public figures) for people with ASD to at least push some level of acceptance.  At least to contrast with the child-centric picture of ASD.

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Dr-David-Banner

I tend to be a bit of a rebel as the system let me down from A to Z. School was impossible and my problems were obvious. If you were slow you were just taken for being a dunce. It took years for me to discover AS and maybe 3 years more to conclude the medical establishment had misrepresented Asperger's work in ways I find hard to fathom. Diagnosis can be simplified by the use of basic logic. Clues? If you have full AS childhood is the first area to examine. Concerned parents, frustrated teachers, clumsiness, withdrawel, tantrums, bullying and so on. School is likely to be highly problematic with full AS. Hardly any of Asperger's patients coped with normal school. A few could be helped while some others couldn't cope in a normal school. Other than that Asperger states you can be non neurotypical with traits of AS. In fact it is probably far better to have autism traits than the full disorder. I think where I may disagree with Lorna Wing was her statement the Asperger children were clinical case extremes and worst case scenario. She then coined the term Asperger Syndrome and applied it widely. That finally led to such high levels of diagnosis mostly in the US, we ended up with an underground culture of Aspies. By the thousands. 

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