ASD traits or ASD?

Yeah I think most of what you said applies to me. The wait is going to be stressful but I can't really spend £2000, especially since I do get on fairly well day to day. I am still confused by what "having traits" as opposed to having ASD would mean. Not expecting an answer here, just saying :)

Hi Piki, you seem to be in a similar situation to me. I am in my mid 30's and waiting for my assessment, but mine is much closer, it's in about a fortnight.

I go through phases where I think I have ASD and at other times I think I don't. Some aspects of ASD I can relate to, but not all of the typical traits, and not always to a level where they would seem to pass a threshold that would mean ASD was probable.

I've been waiting about 18 months for my assessment and it has been difficult for me to get on with my life in the meantime. I could definitely do with some support in certain areas of my life so it seems a positive diagnosis would help in that respect, but obviously don't want to get too involved in case the outcome is negative. In theory people should be able to get help and support because of their needs regardless of whether they tick a specific diagnostic box or not, but in practice I'm not sure that is the case.

There is nothing to stop us working on ourselves in terms of dealing with anxiety and accepting ourselves in the meantime, but for some reason it is difficult being in a kind of limbo, waiting. 

I still find it difficult to explain to people what Aspergers is but there are common themes.. Complex thoughts as you put, are a way of ensuring your social encounters are correctly handled. This causes anxiety, stimming and more thinking which becomes tiring (shut down) or you blow your top (melt down). There are a lot of other "traits.. , sensitivity to noise, light, pain and or smell. Picky eaters. Obsessive in thoughts, passtimes and behaviour. Like routines and structure. Cant multi-task or easily modify thinking. Hate small talk and think its pointless. Tend to stare or look away all the time. Finally, Social Masking which is more perfected in woman, where you can appear normal to everyone but in your mind you are thnking of trying to fit in, copy behaviour and sometimes thinking if something else.. 18months is a long time to wait and your only option for a quicker diagnosis  would be private but this will cost about £2000!

Actually I found the scoring keys for the AQ50 and EQ40, so just I scored the questionnaires I sent for my referral. I scored 34 for the AQ one, and 15 for the EQ40. Both results surprised me. I thought I had more empathy than that but 15 seems pretty low. And I expected I would end up with a more borderline score for the AQ. I guess at least it means they should take my referral seriously since I seem to score above the 32 threshold.

Thank you for explaining. And did you get an official diagnosis? I'm finding that the more I read or hear about ASD, especially women with ASD, I realise that I do things that I didn't even realise I did. Like stimming. I thought stimming was only things like hands flapping or rocking as they're the most talked about, but as I started understanding more about why people stim I realised I did it too, although mine seem mostly socially acceptable which is why I never really noticed them before. Or masking. I had always had a very busy internal thought process any time I was with people but never thought to analyse it. But having heard more about masking I realised I was constantly wondering if my face was making the appropriate expression, if I was reacting right, or too much, I was always trying to read between the lines and questioning what people actually meant or expected from me, and finally understood why I feel exhausted after any social gathering and feel the need to be on my own after a bit as I just want to stop thinking. But before I just thought I was shy or socially awkward, because I didn't know to pay attention to my internal thought process.

I initially thought my dad was autistic, and I wasn't. Now I realise that we both are. When I believed that I *wasn't* autistic, I think what was happening was that I defined (neuro)"typical" according to my own experience (circular logic - I'm like me, and I'm typical, therefore I'm typical), and it took a long time for me to readjust and recalibrate to allow myself to believe that, objectively, I am autistic.

Like you, I don't have meltdowns but I have had several severe bouts of what looked like depression & may well have been but might also count as burnout / emotional overload.

That's very helpful, thank you.

Sure, I got all three of part A:

* Deficits in social-emotional reciprocity, 

* Deficits in nonverbal communicative behaviors used for social interaction,

* Deficits in developing, maintaining, and understanding relationships

and I got one of part B:

* Hyper- or hyporeactivity to sensory input.

What I was missing was at least one more out of part B: 

* Stereotyped or repetitive motor movements,

* Insistence on sameness, inflexible adherence to routines, 

* Highly restricted, fixated interests that are abnormal in intensity or focus.

At the ADOS, it was noted that I do have restricted interests and have rigid thinking (from memory) so that gave me another *two*, I think.

That's interesting. I think my traits are more in the way I think or struggle to analyse things rather than how I act. But I don't seem to have certain traits which might be necessary to be diagnosed as having ASD, for instance I don't think I get sensory overloads, more like emotional overloads. That said I do have sensitivity to sound and smell, but maybe not to the extent that they would cause a meltdown. And I have several intense passions and although I do find it easy to learn new things and skills and can get intensely focused on them, I don't research them in detail as I don't like research, which doesn't sound like it's really fitting of ASD. But most other aspects I strongly recognise myself in.

Piki86 said:

is it possible to have ASD traits without actually having ASD

Yes. A large part of the way some people behave is due to their socialisation.

My husband was brought up by an autistic step-dad. He's quite clearly a NT but as he learnt some of his behaviours from this man in these ways he acts like an aspie.

Same here. I found a scoring sheet online (not sure how accurate it was) and tried to score myself, it was slightly above average but not a super high score, but being a woman I wonder how that comes into play. The EQ I scored way lower than I expected I would.

Would you mind explaining what the 4 pieces were for you? Then the fifth?

Good to know, thanks. I've already done the AQ50 as well as the EQ. I was indeed wondering if there was a more specific DSM5 questionnaire. Also I wonder what the difference usually is in the AQ50 results between men and women, since I've seen a lot about how differently ASD shows in men and women (biologically speaking I believe).

Indeed - I was given 4 pieces following my diagnostic interview & referred for ADOS, then they gave me all 5 :-). The wait in between wasn't pleasant at all.

I love that analogy.

Having 4 types of pieces would suck though, being an outcast from both sides.

As for questionnaires-I was sent AQ and EQ to complete before being accepted on the waiting list.

There are a lot of questionnaires around, perhaps the AQ50 is one of the first to try (Google brings up links to it). It is relevant to the DSM 5 criteria but only (as far as I know - I've never thought about it specifically before) via the fact that it looks for the same condition. I can't think of any tests that explicitly and obviously go through the DSM 5 criteria one by one, if that's what you're looking for?

That's very helpful, thank you. Are there any questionnaires relevant to the DSM 5 criteria?

So what would it mean to have autistic traits, but not a full autism diagnosis? Are they things than can be worked on, treated with CBT and the likes? Would I be expected to get over them? Or are these traits as serious and relevant as having ASD, but the person just doesn't have all the traits? I'm just trying to think about what would happen if they came back saying I have traits rather than ASD. Because I'm 100% sure I at least have traits. Just not sure what that would do if you see what I mean. 

That's a good analogy, but I would say that it's not so much about how many pieces you have, but what type those pieces are; if you've got a piece of blue sky, a piece of cloud, a piece of grass, a piece of road and a piece of brick wall, then you have ASD irrespective of how many of those types of piece you have. If you have even 60 pieces of sky and 20 pieces of grass, plus a bit of road and a bit of wall you have autistic traits because you're still missing a piece of cloud. But you could be diagnosed with only 5 pieces!

Autistic people are all different because it's so incredibly unlikely that any two of them will have the same pieces of sky, cloud, grass, road, and brick.

This is based loosely on the DSM V criteria where you need 5 types of symptom (A1, A2, A3 plus two out of B1, B2, B3, B4) to be diagnosed as ASD.

Yeah I think 40 or 50 would probably get some kind of diagnosis like "has autistic traits"  is some such rather than a full on diagnosis of autism.