Adult autism- how to get diagnosis?

I have too have had real problems getting my diagnosis at 56 and I hope in light of my experience these comments may be helpful

1. if you already have children on the spectrum (I have two!) please remember that the diagnostic process for adults is totally different, it is not a multi-agency assessment but rather a one to one consultation(s) with a neuropsychiatrist which primarily looks at development through childhood to adulthood.

2. The first formal step I took was to do the online AQ test TWICE six months apart (I got 49 on each!), my thinking of doing it twice was to reassure a GP that the results were not skewed by whatever was happening currently in my life at the time I did the test

3. Having done the AQ tests I printed out a lengthy folder of paperwork that included the following: the AQ test and scoring chart, my AQ test results, some papers online indicating the validity of the AQ test as a useful incicator of ASD etc, a detailed history of my social and communication problems since childhood ESPECIUALLY from ages 5 to 20 (this seems to be an important age range)  I also printed out a number of learned papers I found online which discussed the importance of a late diagnosis. I also made a point of printing out the Guidance to GPs for patients asking for an autism diagnostic referal as an adult ( this is freely available online) and also (as a backup!) references to the Autism and Equality Acts should I need to throw them at the GP to presurrise him! 

4. Having made a GP appointment I arrived armed with over a 100 pages of stuff all cross referenced and bound up. Because I had clearly done so much preparation I was able to convince the GP that      a) I was serious about seeking a didgnosis     b) I had done my homework by both looking at my history and doing the AQ test         c) I had considered the reasons why a diagnosis was important to me and          d) I was aware of the legal requirement of the GP to make an appropriate referral.

(might also be useful here to see just where a GP would do  a referral to!)  The general idea was to give the GP the impression that this patient was serious about seeking a diagnosis and was not going to take no for an answer! Incidentally the presence of wiritten notes calmed me and made sure I would not let my anxiety overwhelm me!

5. IMPORTANT BIT - having made a referral I needed to wait over 18 months to get appointment with neuropsychiatrist!

6 As some of you  who have posted have already pointed out a great deal of this consultaion will be the neuropsychiatrist taking a detailed history, particularly of childhood and progression to adulthood. For those, like myself where because of our age our parents are no longer with us it is critical to spend time thinking about this period in our lives and re-examining what happened in light of possible ASD, try to recall when we first walked, talked and in particular what games and toys we used in childhood. In order to be clear and calm I printed up a 20+ page detailed document showing      a) as many childhood developmental stages as I could remember         b) any aspects of these which either myself, my peers or parents/guardians thought unusual at that time         c) similar history of early adulthood           d) a list of problems I am currently struggling with           d) personal comments about the importance of a dignosis to me at this time.

Remember the neuropsyhistrist is familiar with dealing with people of the spectrum and should have no problem lettiing a patient take as long as they like during the consultation to consult and read from their notes.

7. In my case he gave me the result immediately but it took some time for the paperwork to arrive.

I have too have had real problems getting my diagnosis at 56 and I hope in light of my experience these comments may be helpful

1. if you already have children on the spectrum (I have two!) please remember that the diagnostic process for adults is totally different, it is not a multi-agency assessment but rather a one to one consultation(s) with a neuropsychiatrist which primarily looks at development through childhood to adulthood.

2. The first formal step I took was to do the online AQ test TWICE six months apart (I got 49 on each!), my thinking of doing it twice was to reassure a GP that the results were not skewed by whatever was happening currently in my life at the time I did the test

3. Having done the AQ tests I printed out a lengthy folder of paperwork that included the following: the AQ test and scoring chart, my AQ test results, some papers online indicating the validity of the AQ test as a useful incicator of ASD etc, a detailed history of my social and communication problems since childhood ESPECIUALLY from ages 5 to 20 (this seems to be an important age range)  I also printed out a number of learned papers I found online which discussed the importance of a late diagnosis. I also made a point of printing out the Guidance to GPs for patients asking for an autism diagnostic referal as an adult ( this is freely available online) and also (as a backup!) references to the Autism and Equality Acts should I need to throw them at the GP to presurrise him! 

4. Having made a GP appointment I arrived armed with over a 100 pages of stuff all cross referenced and bound up. Because I had clearly done so much preparation I was able to convince the GP that      a) I was serious about seeking a didgnosis     b) I had done my homework by both looking at my history and doing the AQ test         c) I had considered the reasons why a diagnosis was important to me and          d) I was aware of the legal requirement of the GP to make an appropriate referral.

(might also be useful here to see just where a GP would do  a referral to!)  The general idea was to give the GP the impression that this patient was serious about seeking a diagnosis and was not going to take no for an answer! Incidentally the presence of wiritten notes calmed me and made sure I would not let my anxiety overwhelm me!

5. IMPORTANT BIT - having made a referral I needed to wait over 18 months to get appointment with neuropsychiatrist!

6 As some of you  who have posted have already pointed out a great deal of this consultaion will be the neuropsychiatrist taking a detailed history, particularly of childhood and progression to adulthood. For those, like myself where because of our age our parents are no longer with us it is critical to spend time thinking about this period in our lives and re-examining what happened in light of possible ASD, try to recall when we first walked, talked and in particular what games and toys we used in childhood. In order to be clear and calm I printed up a 20+ page detailed document showing      a) as many childhood developmental stages as I could remember         b) any aspects of these which either myself, my peers or parents/guardians thought unusual at that time         c) similar history of early adulthood           d) a list of problems I am currently struggling with           d) personal comments about the importance of a dignosis to me at this time.

Remember the neuropsyhistrist is familiar with dealing with people of the spectrum and should have no problem lettiing a patient take as long as they like during the consultation to consult and read from their notes.

7. In my case he gave me the result immediately but it took some time for the paperwork to arrive.