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Many adults who are self-diagnosed autistics face questions regarding obtaining an official diagnosis. Should they get officially diagnosed? And if they choose to go for a diagnosis, how to go about getting evaluated? And what is the evaluation process like, anyway? Of course, parents with undiagnosed children with a possible ASD, face many of the same questions, but since I was diagnosed as an adult, this piece of information will mostly be relevant to adults considering professional evaluation for ASDs. On this page, I'll also share my own experience, being first self-diagnosed and then officially diagnosed twice as an adult. Please realize that the way to a diagnosis varies widely, so what applies to me, may not apply to you.
Of course, this is a very individual choice. There are many reasons why you might want to pursue an official diagnosis, such as:
I myself was sort of self-diagnosed for two years between 2002 and 2004. At the time, I was still a minor (sixteen or seventeen) and my parents were not supportive of my ASD suspection. Technically, I later found out, I wouldn't have needed my parents' permission - in the Netherlands, you can make your own medical decisions when you're sixteen -, but I'd needed their cooperation anyway. Besides, I had no idea how to go about seeking a professional evaluation. I also remember being a little fearful of needing to officially medicalize my experiences. Once, my high school tutor asked me whether I would want to be officially evaluated, and I remember saying that I wasn't sure, since I realized Asperger's/autism is a very serious thing. Up to the point of my second official diagnosis in December, 2007, I feared being told that I was an attention-seeker who didn't really have problems, so I stayed safe and didn't pursue official evaluation.
When I did pursue an official diagnosis, in late 2006, I wasn't self-diagnosed anymore and, at the time, didn't care what label the doctor would stick onto me as long as I got help. The reason was that I felt I was getting stuck in about every area of daily life I was involved with. I still didn't know how to seek help and still feared being told I was the attention-seeker who didn't have real problems, but this time the diagnosis was not initiated by myself, so I just agreed to see the doctor and she diagnosed me. Hence, for me the main reasons to want a diagnosis were getting accommodations, support and possibly treatment.
When my records were lost after I moved to another city and I as a result had to be evaluated again, I did feel uncomfortable being evaluated again, because with each new evaluation, there is a risk of losing your old diagnosis - on which ground I'd been able to get workable treatment and support services and which had explained and validated many of my experiences. I still feared getting what I called the "fine fine" answer - in other words, being told that I had no problem -, and this got worse as I was hospitalized on the psychiatric ward two weeks after my evaluation had started, and the staff had virtually no understanding of my difficulties and some questioned my diagnosis. However, since the staff started noticing I had severe meltdowns, which'd been the reason for my initial evaluation in late 2006, I started fearing being labeled something else and consequently having my behavior attributed to malicious causes even more than it already was. But well, the evaluation had started and was going to be finished and I was diagnosed with Asperger's this time - and a label didn't change anything about the staff's attitudes, anyway.
By the way, most online support groups for autistic adults will accept you even if you are self-diagnosed. I was myself an active part of various E-mail support groups before I was officially diagnosed as autistic.
Generally, a psychologist or psychiatrist will diagnose you. This professional will either practise independently, or work with an agency. These agencies will usually be either mental health agencies, as in my case (and for most people in the Netherlands), or agencies for people with developmental disabilities or learning difficulties (as appears to be the case in the USA and the UK). In the Netherlands, if you are not yet involved with a mental health agency, your GP will need to refer you to this agency. I seem to understand that in other countries, other professionals can also refer you. If you are already involved with an agency, you'll generally still need to get a referral to a professional with expertise in ASDs. In the Netherlands, there are so-called autism teams to evaluate and treat autistics. Here, you generally first get an intake interview with a non-specialized professional at the agency, who will then refer you to the autism team.
In my experience, the first professional I saw in late 2006 regarding my possible ASD, was the psychologist at the agency for supported living I was receivign services from at the time. He thought I needed formal evaluation and had me go to the mental health agency in my town. I seem to remember he suspected I was on the spectrum, but I'm not sure. I didn't get my GP's referral - in which he just wrote that I wouldn't respond and fell silent, because that was what he'd seen (my support worker asked for the referral) -, till after my intake interview at mental health. In my first diagnosis, the doctor I had the intake stuff with actually ended up diagnosing me and then referrign me to the autism team for treatment, but this is not the normal course of action. For my second evaluation, I was referred directly to a psychologist with expertise in autism, because I'd already been involved with my old town's autism team for treatment services.
There are many parts of an autism evaluation, and every evaluation has some of them. In almost any case, the professional will interview you regarding your symptoms and will want to do an interview with your parents or another person who knows you from early childhood, to determine whether you met the ASD criteria when you were young. If you don't have any family who remember your early childhood, they will likely ask you to recall it as well as you can. Other parts of an evaluation might include:
My first evaluation was relatively simple - and, in my opinion, pretty poorly carried out. I had the first discussion on December 12, 2006, in which I barely said a thing. Because there was absolutely no way the doctor could get me to respond, she scheduled a follow-up interview five weeks later. A few weeks before this interview, I'd been told that I may need to leave my home because of a severe meltdown, so I was able to use that as an example to explain how things went. The questions she asked me seemed sometimes on-topic but sometimes clearly not, so I wonder what other information she had that I hadn't told her. She didn't get to ask about the irresponsiveness that my GP had written on the referral - in fact, the entire referral as well as a general intake questionnaire every new patient is given, were pretty much ignored. After this discussion, the doctor decided she wanted me to see a psychiatrist (she was a general doctor in training to become a psychiatrist) and I had another interview with her and the psychiatrist, which seemed like another bunch of seemingly unrelated questions. After this discussion, the intake team discussed me amongst themselves and I was called by the doctor asking if they could see my parents. I agreed and so did my parents, and we went to see the doctor. This time, she administered a fairly structured interview, asking my parents many questions relating to possible autistic symptoms. After this interview, she referred me for treatment, and I didn't find out till calling her three weeks later that she'd labeled me autistic.
My second evaluation was a little more structured, but I don't understand large bits of it since I wasn't present when my parents were interviewed. It started with a general get-to-know-you interview, that really had no relevance to autism as far as I could tell and in which I left a relatively bad impression on the psychologist who was going to diagnose me, and he on me. After this, we waited for over three months before we had nother discussion, because I was overloaded by the stress of the move to Nijmegen and starting at university. This appointment consisted of two parts: first, another get-to-know-you interview, and secondly, the administration of the so-called AQ-test, a 50-item yes or no questionnaire about possible autistic symptoms. This test is not itself meant as a diagnostic tool, but it apparently can aid in a diagnosis of an ASD. My parents had received their own questionnaire, which I haven't seen but which teh psychologist explained as an extensive developmental questionnaire. Because of my blindness, however, my parents were unable to answer many questions without further explanation, so the psychologist invited them to come over for an interview. The face-to-face interview was followed by a telephone interview with my father, because they were not yet done with the questionnaire when time was up. After my parents had been interviewed, the psychologist returned to me and we made another appointment for another interview. This was the so-called DSM interview, which basically means that the diagnostician will walk you through the DSM-IV criteria for autism spectrum disorders and ask you why you think or don't think you meet each criterion. Before the DSM interview, the psychologist had already pretty much decided that I had Asperger's Syndrome, and after the interview, he concluded that I was indeed an Aspie.