Should I request an autism assessment?

Thank you all for the responses. 

I have been seeing a clinical psychologist, and brought up the topic with her. Sadly she can’t personally assess me through the role she is seeing me in, but has spoken to me in a bit of depth as to why I want to pursue it and is putting in a GP referral.

I discussed a list of traits that I feel warrant a referral and diagnosis, on top of the above I included:

*chewed my cot as an infant/toddler (so much so I wore down my front teeth. 

*bed wetting until 5, had to be reminded to pee by parents when out of nappies as would often not realise I needed.

*lining up toys as a child, setting barbies up in a perfect scene instead of playing with them traditionally.

*excessive touching of objects (both as a child, to this present day) - have to touch objects evenly with full hand, has to ‘feel right’

*obsessed with counting/numbers (again since childhood) - would (and still do) count steps when walking, count when chewing, would mentally count sky satellite dishes during any car journeys as a young child, obsessed with reading car registration plates, reading street signs and counting the number of letters.

*organisation - items/objects have to be arranged in a particular order/way. For example - food items stored upright, labels facing precisely to the front, crockery & cutlery tidied away facing the correct way, bedding/towels folded in a specific way with labels folded at the bottom, money arranged heads up, notes ordered into denomination, then by serial code & date.

*Trichotillomania during teen years (pulled hair our head), resulting in a bald patch on my head. 

*often told I ‘overthink’ - however to me this is just normal thinking  I will consider all eventualities in almost all situations, especially before making decisions. Doing this allows me to be prepared for Al probably outcomes and plan accordingly, also reduces anxiety around situations.

*difficulty in busy environments - too much background noise creates a table and makes it difficult to focus on a conversation. 

*can often zone out of conversations if there are several background factors (e.g. noise, movement, light) - often unaware I’m doing this and will appear to still be focussing by nodding along, and will only realise when I zone back in and realise I’ve missed half a conversation. 

This is not an extensive list - my current list is approximately 5 pages and I am adding more as I remember.

The psychologist did say some of these traits could be anxiety/OCD, but was happy to refer me to the GP to pursue an autism assessment. I just feel so confused as to whether to pursue this - I am so anxious about doing so then being told I don’t have autism and I have wasted peoples valuable time. 

I completely relate to all of the traits you listed and sought a diagnosis last year. I had my assessment last week and was diagnosed with ASD. My son was diagnosed a few years previously and as I researched autism I noticed more and more that explained issues I had felt throughout my life. I also noticed behaviors in him that I could relate to. 

Whether to seek diagnosis or not is an individual decision, but for me it was about knowing for sure (instead of 99.99% sure as I have been for a while). Others had said they noticed traits but didn't think I was autistic due to my achievements (similar to yours) but because I am not close to anyone and never open up about it, no-one sees the struggles that I have behind the scenes holding it all together. 

I had been referred for CBT and was part way through a course when I got my diagnosis as they felt that a more counselling based therapy may be more appropriate given my news and how this would likely have contributed to issues in the present day. Knowing that I'm autistic has helped to get some support that is probably more appropriate and effective, and may not have been as accessible without an official diagnosis. I should also be able to request some reasonable adjustments at work too which will be really helpful as this is where a lot of my stress and anxiety comes from.

Ask yourself "Would I do anything differently in my life if I knew I was autisitc?" If the answer is yes then my view is that a diagnosis would be beneficial. There are a few stages which are presumably designed to identify where individuals are unlikely to meet the diagnostic criteria. I was rejected at teh first stage because my GP did not forward any comments on our discussion where I requested the referral - they only sent my AQ10. I followed up with a similar list to the one you made above, along with some observations from my wife and my boss and was then accepted. 

Oo are you me?

I was diagnosed with OCD and GAD as a young child and have been rediagnosed with these at various points in life. 

I have the same questions as you. A decade ago, I thought I might be autistic and asked my then psychologist. She said no way. A couple of years ago another psychologist asked me without any suggestion from me if I could be autistic. I said no I’ve been told I’m not and she said don’t be so sure!

I wonder if the issue could be that OCD is popularly thought of as just “anxiety”, in reality for those of us who develop it young it is more accurately thought of as a neurodevelopmental condition, perhaps closely related to autism. Anxiety is just one of the symptoms in the constellation of neurodevelopmental difference that characterise it, but it’s the only one that’s really talked about!

But I don’t know if that’s right and I m also stuck on what to do about it all. I feel different and I’d love a name for it that made sense to me and others.  

Grogu said:

There’s aspects of my life/characteristics that make me believe I am just worrying over nothing - for example, I am married with children, can deal well with loud noise (concerts/football crowds etc), I loved imaginative/role play as a child.

Why worry? It seems like you're doing ok. if you are autistic now you'll be autistic after diagnosis as well. but it might come in handy down the line. You know when I did my ados assessment they said I wasn't imaginative. I was given inanimate objects and asked to tell a story with them as if they were characters. I read the report ... you know why they didn't think my story demonstrated imagination? Because I didn't give the objects 'proper' names like jack or bob. It was agent spoon etc. And the story was a sci-fi setting, apparently they though imagining something in a genre you're interested in doesn't count as real imagination. So when they talk about imagination I think what they mean is imagination that other people find relatable. You can have fantastic powers of imagination but not nessiceraly find it easy to tell an imaginative story others find relatable.

Also I know lots of autistic people who are very tolerant to noise. As a child they thought I was deaf because I didn't respond to noises, voices etc. As my mother pointed out, it's not that I couldn't hear. I just didn't care. The noise just washes over me. Sometimes its quite comforting. A nightclub with a baseline you can feel throughout your body. I have to wear earplugs not because the sound bothers me but because if I don't I'll stand right next to a speaker and have ringing in my ears for hours after.

I'm happy to be helpful. Unfortunately, from what I have been told, it is a bit of a lottery as to whether or not a particular GP is helpful or dismissive. Also, some diagnosticians seem to be still working on assumptions about autism that are decades out of date. Having said that, the process can go very smoothly, albeit grindingly slowly in most of the NHS. I was in the fortunate position to be able to pay for private assessment for both myself and my younger daughter. If you go down that route you can self-refer, your GP does not need to be informed. It took 3 weeks between me booking an assessment and being assessed - by an NHS consultant psychiatrist (working privately). Prices seem to be around the thousand pound mark.

The fact that people cope with life is no measure of the difficulties they experience in doing so. As the psychiatrist who diagnosed me said, "The only alternative to coping is not coping, and the distance between one and the other can be very small". I tend to liken autistics who cope with life to Paralympians, just because they can run a 100 metre race, it does not mean that they are not amputees. 

Thank you for your response! This is very helpful and reassuring, my biggest concern is approaching the GP and being told no/it couldn’t possibly be autism because of my background and the fact I can ‘cope’ with life. 

It’s so difficult because autism is a spectrum, with such varying degrees of severity and every person will present differently. I feel like - having researched it in some depth - I certainly appear to meet a number of criteria, and the screening tools all return scores which are indicative of autism. However, it’s just a constant niggling worry that I then go through it all to be told it is not, and then be left forever wondering why I am the way I am. 

Thank you for your help :-)

I have 3 degrees, worked in scientific research for 34 years, have a wife and 2 children and 15 minutes into my autism assessment the psychiatrist doing the assessment said he would be diagnosing me with ASC. I was also diagnosed with GAD and social phobia, my OCD tendencies were ascribed to my autism. Reading the description of your traits, I  think that you would benefit from an assessment. It gives a level of certainty and validation that I think is very valuable. Just because you cope with life, it does not mean that you do not have difficulties, you are every bit as entitled to go for an assessment as anyone with similar or more severe traits.