“I’m an adult and suspect I have Asperger’s Syndrome. How do I go about getting a diagnosis?”
In the UK, the diagnostic process is much like it is for any other condition or illness you may have. In the first instance, you ought to make an appointment to see your GP, who will then refer you to a more specialist clinician to take over your case. The flow chart here gives you an idea of what the process might be like:
When you make this appointment with your GP, make sure your diagnosis is the only thing you are going to talk to them about. If you try to mention it during an appointment about something else, your GP may not address it fully. Your GP will want to know a) why you think you have ASD and b) why you are seeking a diagnosis as an adult. It is important to come prepared to this appointment so that you have some answers to these questions. I have given you some ideas here:
a) why you think you have ASD
The best thing to do is to go through the diagnostic criteria and make a list of the aspects of autism that are most affecting you. Since autism is a spectrum condition, each person may be very different but, what we do all have in common is the ASD triad of impairments. These are: social imagination, social interaction, and social communication. Try to give at least one example of how each of these affects or impairs you. For example, you might find it hard to put yourselves in someone else’s shoes (social imagination), you might not feel you have any friends (social interaction), you might struggle with metaphors and analogies (social communication).
b) why you are seeking a diagnosis as an adult
The answer to this deserves some thought since many GPs can’t understand why an adult who has already had lots of life experience and may already be very successful, with a family, etc. would suddenly decide to seek a diagnosis. For example, a lot of people say their diagnosis has given them closure to a lifelong set of questions.
If your GP agrees you have a good case for a diagnosis, he or she will refer you to a specialist condition near to where you live. There are not actually that many services for adults in the UK so you might have to travel a bit.
Over a period of weeks or months, you will receive lots of forms and questionnaires in the post which you will need to complete and send back. From their side, these probably act as a filter to check whether or not you have enough symptoms or severe enough symptoms to qualify for a diagnosis. The questionnaires are nothing to be worried about and you will probably have seen these sorts of questions before. They merely ask you to agree or disagree to a statement, and so on. They will probably also send some questionnaires for your parents to fill in, since autism is a lifelong condition, it’s important for them to understand what you were like as a young child. Also, we often think we act differently to how we actually do. You might have one take on something but your parents may say the opposite. They are probably more likely to be right!
Even though a lot of people with ASD feel very anxious speaking on the phone, a clinician will probably want to call you at some point following the questionnaires. If I remember rightly, it’s not compulsory but it is helpful for them (and so consequently you) to have a chat with you to find out a bit more or to question further your answers from the questionnaires. At this point, it should be obvious whether or not they suspect you have ASD and, if they think you do, they will contact you again with a letter of appointment for your diagnosis.
In the following weeks or months you will receive a letter with the date of your diagnostic appointment. You will probably only have to go to one appointment, which takes between 4 and 6 hours. You will need to bring a loved one (ideally a parent or someone who has known you since birth) along with you so that they can speak to them separately. During the appointment, you will be interviewed by a psychiatrist or other professional whilst your parent is interviewed by someone else in another room. Later on, you will speak to the specialists together and they will give you the feedback from their assessment at the end of the session.
Hopefully you will receive your diagnosis there and then. They will probably photocopy you some official documentation because the full report has to be written up and that can take a long time for you to receive. So in the mean time, you can use the notes they give you on the day to act as authentication if you want to tell your employers or co-workers, etc. that you have ASD.
Please note the process of diagnosis will vary depending on where you live. There isn’t one standard way for an assessment to be carried out, but all professionals should all be following the same NICE guidelines. I can only talk about how it is in the UK, on the NHS. I have no experience about how it is in other countries so a search on Google could give more helpful advice.
Some other information you might find helpful if you are an adult in the UK wanting a diagnosis: