Why Get Diagnosed?

Hello Boggart, quite a struggle you're having there, it seems.

Firstly, may I say that I take exception to the idea that there is such a thing as 'mild' or 'severe' autism. My own diagnosis involved the word 'severe', but in the scheme of things I cannot possibly understand that anyway - all I know is how my autism affects me. There are greater or lesser effects of autism traits, on different people at different times, and we do discuss that sort of thing amongst ourselves. I think that for the most part, we just accept that this is our reality.

Your GP will not hate you, will not 'get into trouble', and will continue to try and help you. In fact, what you say about your GP is exactly the same as I say about mine - my God bless her for being 'on my side' because, thanks to her, I finally got an explanation for who I am.

Sometimes, as an AS person, it's as if we're trapped inside a glass bell jar. People can see us, and we're desparately trying to communicate with them, but all that seems to happen is that we can't get past the barrier. It's very frustrating to stand in front of someone shouting to them, and they still can't hear.

Women are much more difficult to diagnose than men. I don't know anyone who doesn't find some of the questions ambiguous or misleading anyway, and the AQ test is NOT definitive, it's indicative and informative but it isn't diagnostic. Your doctor is right. It takes a trained professional to assess someone, and there still aren't enough of them around, an 'ordinary' psych team won't necessarily have a specialist amongst them, and if you weren't seen by someone who specialises, which is what your doctor appears to be saying, then they wouldn't know what they're doing.

The AQ test is partly the 'evidence' they use to refer you on to a specialist. This isn't disrespectful to them, it simply points out the still poor diagnostic facilities for ASD at psych team level. There are many posts on here about this very subject, mostly with the same, frustrating result.

Anxiety is endemic to ASD, but you have to remember that there are other conditions, even your physical health, that cause excessive anxiety too, so anxiety doesn't have to indicate ASD. That said, there are supposed to be clear pathways for your GP to follow in order to refer someone for an ASD assessment. This is supposed to be a requirement, and your GP is supposedly required to know what it is.

The AQ test itself is, I feel, awkward. In order to fill one in properly, you have to be very honest with yourself about yourself. Women tend to be, dare I say, 'born' with social affinity. Given that women say they can often hide in a group because of the ways that girls act as a group, I think that the 'social interaction' questions are maybe more appropriate to boys than girls, and there is plenty of 'thinking' going on right now about this very issue. It appears then that the AQ test as it stands may very well be male biased. Certainly, more boys than girsl are getting diagnosed, and if ASD affects each sex equally, then something is very wrong with the diagnostic process and we need to address that.

We usually tell people to remember that it can be very difficult for us to talk to people and tell them what goes on for us. One way to deal with that is to write a list of things that happen to you, the way that you think, and things that affect you. Most of us find this difficult because we start judging those things, and actually it's better just to write them down without worrying what others may think. Others have done this and found it very helpful in presenting their case to their GP, mostly because all the stuff you think, you can't remember to say when you're actually there, and often the self-consciousness of talking about yourself stops you doing it, if you see what I mean.

Having AS traits doesn't necessarily mean you're on the spectrum, but don't mean that you aren't, either. As I say, that takes assessment by a trained professional because it's a whole picture rather than a sum of parts. Try the writing exercise, don't be afraid to write anything down because it seems 'wrong' or 'trivial' - if you're AS, neither of those is true at all, quite the opposite in fact.

Good luck, I hope you get other answers on here and that somewhere in them you feel supported, helped and advised. There are no stupid questions, if you're asking, it's important to you and we will treat it that way

Hello Boggart, quite a struggle you're having there, it seems.

Firstly, may I say that I take exception to the idea that there is such a thing as 'mild' or 'severe' autism. My own diagnosis involved the word 'severe', but in the scheme of things I cannot possibly understand that anyway - all I know is how my autism affects me. There are greater or lesser effects of autism traits, on different people at different times, and we do discuss that sort of thing amongst ourselves. I think that for the most part, we just accept that this is our reality.

Your GP will not hate you, will not 'get into trouble', and will continue to try and help you. In fact, what you say about your GP is exactly the same as I say about mine - my God bless her for being 'on my side' because, thanks to her, I finally got an explanation for who I am.

Sometimes, as an AS person, it's as if we're trapped inside a glass bell jar. People can see us, and we're desparately trying to communicate with them, but all that seems to happen is that we can't get past the barrier. It's very frustrating to stand in front of someone shouting to them, and they still can't hear.

Women are much more difficult to diagnose than men. I don't know anyone who doesn't find some of the questions ambiguous or misleading anyway, and the AQ test is NOT definitive, it's indicative and informative but it isn't diagnostic. Your doctor is right. It takes a trained professional to assess someone, and there still aren't enough of them around, an 'ordinary' psych team won't necessarily have a specialist amongst them, and if you weren't seen by someone who specialises, which is what your doctor appears to be saying, then they wouldn't know what they're doing.

The AQ test is partly the 'evidence' they use to refer you on to a specialist. This isn't disrespectful to them, it simply points out the still poor diagnostic facilities for ASD at psych team level. There are many posts on here about this very subject, mostly with the same, frustrating result.

Anxiety is endemic to ASD, but you have to remember that there are other conditions, even your physical health, that cause excessive anxiety too, so anxiety doesn't have to indicate ASD. That said, there are supposed to be clear pathways for your GP to follow in order to refer someone for an ASD assessment. This is supposed to be a requirement, and your GP is supposedly required to know what it is.

The AQ test itself is, I feel, awkward. In order to fill one in properly, you have to be very honest with yourself about yourself. Women tend to be, dare I say, 'born' with social affinity. Given that women say they can often hide in a group because of the ways that girls act as a group, I think that the 'social interaction' questions are maybe more appropriate to boys than girls, and there is plenty of 'thinking' going on right now about this very issue. It appears then that the AQ test as it stands may very well be male biased. Certainly, more boys than girsl are getting diagnosed, and if ASD affects each sex equally, then something is very wrong with the diagnostic process and we need to address that.

We usually tell people to remember that it can be very difficult for us to talk to people and tell them what goes on for us. One way to deal with that is to write a list of things that happen to you, the way that you think, and things that affect you. Most of us find this difficult because we start judging those things, and actually it's better just to write them down without worrying what others may think. Others have done this and found it very helpful in presenting their case to their GP, mostly because all the stuff you think, you can't remember to say when you're actually there, and often the self-consciousness of talking about yourself stops you doing it, if you see what I mean.

Having AS traits doesn't necessarily mean you're on the spectrum, but don't mean that you aren't, either. As I say, that takes assessment by a trained professional because it's a whole picture rather than a sum of parts. Try the writing exercise, don't be afraid to write anything down because it seems 'wrong' or 'trivial' - if you're AS, neither of those is true at all, quite the opposite in fact.

Good luck, I hope you get other answers on here and that somewhere in them you feel supported, helped and advised. There are no stupid questions, if you're asking, it's important to you and we will treat it that way