WIBU to get a private adult autism assessment when I don't think I have autism?

[Beaglelegs]

With there being more information about women with autism and how it differs to the stereotypical view of autism in men, I've been thinking about some difficulties that I have. I had quite a neglectful/emotionally abusive childhood and once I left home I had to work very consciously to fit in. I've always put some aspects of my personality down to that upbringing. Recently though I've been thinking about how even though I'm now mid 40s there's some areas I find really difficult and if anything get harder as I get older, even though other things I think I've overcome pretty well. It has got me wondering whether there is anything more as a cause. Though I do think I have perhaps some autistic traits, I dont think it's enough to be autism and I don't want to minimise the difficulties faced by women with autism, which is why I'm unsure about exploring it.

The reason id be interested to understand this better is I carry a lot of shame from my childhood and though I try not to be self critical I do feel silly about what feels like an inability to be a 'normal' adult. For example, feeling like I don't really understand relationships or have deep connections with people.

Some examples of what i mean about traits -
Even though I've been working on this for years, I still really struggle with small talk and I watch and copy what other people do. I have a mental list of questions to ask people to be friendly.
I consciously watch people's reactions and follow their lead, eg greetings (whether to hug, wave etc)
I work in a job where social skills and understanding other people is key. I'm good at this, which is one of the reasons I don't think I could be autistic. I think though, that I do this in a very different way to other people - I think through logically what they might be feeling and why rather than having a gut instinct or reacting emotionally.
While never diagnosed I'm sure I have face blindness. I sometimes don't recognise people I know well. Walking down the street I don't really register people as people. I find it very difficult to recognise emotion from facial expressions.
I socialise, but differently to most people. I do structured activities (classes, courses) and have acquaintances through these. I don't think I've ever really known how to make and keep friends as most people would. I find having the common interest helps me know what to do and what to talk about.
I don't have the environmental overstimulation difficulties that I know is common for people with autism. I do though find unfamiliar places very stressful and again, have to very consciously work out what's going on. Eg if traveling to a new city for work I've avoided eating because I find going into a new cafe too much, I struggle to differentiate where the path is to queue, where the serving staff are - the picture feels too complicated especially if it's a busy place.

I know that you can't be a 'little bit autistic', but would someone who knows about autism be able to give me some insight into this sort of thing? Am I being a bit ridiculous?

I really hope iv not offended anyone who is affected by autism in posting this, it's not my intention and I don't have anyone irl I could bring this up with.

Have you done the AQ assessment? That is a good place to stat.
psychology-tools.com/test/autism-spectrum-quotient

My recently diagnosed DH scored very high on the test

Thanks @Tricked2003 I have in the past and have had middling scores. I'm not sure how useful they are for women though, I think they're very much based on how autism presents in men.

Google Tania Marshall. She has an extensive list of female autistic traits, I sound very similar to you and scored middling for traditional tests but ticked off almost every single female trait on the list. Got my private diagnosis soon afterwards.
I also had a neglectful and abusive childhood and interestingly a lot of the social challenges present the same as we didn’t have healthy relationships to learn from growing up. However things like sensory issues and other characteristics cannot be explained away by a dysfunctional upbringing

I think it would be good for you to push for the assessment in order to get answers for yourself.

I took the test that Tricked2003 posted and was 38 out of 50. But I think it is because of my social phobia.

I score 37, so yes I am going for diagnosis,

Thanks all, that's really helpful. @EssexLioness I'll have a look at Tania Marshall. I have always thought things were due to poor role modelling and not being taught social skills as a child. I was thinking about it recently though and realised I have an uncle and an aunt (on each side of the family) who aren't diagnosed but would both be considered quite stereotypically autistic and both have (diagnosed) autistic children who are quite similar to them. Eg my uncle is a bit of a loner/bachelor who obsesses about trains, comes across rude socially, gets stressed out, avoids people, talks in monotone etc. And my late mum and gran were both considered a bit odd by others, which got me thinking whether my mum had any ND difficulties that fed into the neglectful parenting in the first place.

Im lucky enough to be able to go private if I go down this route, I'd feel better doing that then trying to take an NHS space.

@regularbutnamechangedd and @vates I scored 38 which is higher than I expected actually. I have a lot of experience of working with children with autism which I think is part of the reason why I feel a bit hesitant, as whatever my issues are they're not as debilitating. But it would be nice to have an idea about this, and what I might want to focus on for self improvement and what I might need to accept is just part of me.
I used to really struggle with anxiety, again due to upbringing (my mum was a very avoidant and anxious person) As I've got older the anxiety has really reduced which I'm grateful for, but the other issues are still there.

I forgot to add an obvious one on the list, I find eye contact almost painful! I remember working so hard on how to 'fake' eye contact by letting my eyes go out of focus and looking at different areas around someone's eyes. Feels ridiculous writing that down now!

I have pretty much all the same difficulties as you and more. I am thinking about gking for an assessment.

I have never believed in labels but I suppose it would be nice for my difficulties to be recognised in some form?

Hi @Beaglelegs, I wonder if some counselling might be beneficial before going to a full diagnosis? There are counsellors who specialise in working with people with autism but they would also be able to help you make sense of your childhood and how that still affects you as an adult. A full diagnosis would cost a lot more in one go whereas you could have just a few sessions of counselling if you didn’t want to take it further.

Thanks @DorothyWasRightTho. I had a lot of counseling when I was younger and I do feel that I have come to terms with my experiences. Also the training that I had to do for my job required me to do a lot of reflection about it. For example, I know that I have some traits for perfectionism/setting high standards for myself that come from being ignored. And I know and am comfortable with my attachment style in relationships. So emotionally I'm comfortable with all that. It's more that, given the growth/self development I've gone through as an adult, I've been questioning why certain things are still difficult.

I know this might sound like a silly example but I went to a food hall recently, where there are lots of different retailers and you order your food and they give you a buzzer. Some of the retailers are out of sight of where you sit. I was (silently) getting really anxious about the set up and whether I'd go to the wrong stall, not recognise where I'd ordered from, not find my way etc. My friend had her kids with her and they volunteered to go take the buzzers to get our food because to them it was fun. I was gobsmacked that a child could feel confident enough to do that let alone enjoy it.

Without wanting to sound arrogant, I'm someone who does quite well in other areas of life or have done things people think are brave - I've competed in sports as an adult, I've lectured at university level, I manage a team in a difficult job. So the types of things I find anxiety provoking or require a lot of headspace feel a bit incongruous with my overall anxiety level/general functioning.

I've looked into it a little bit and the psychologists that offer a private service seem to follow a process of screening tools and profiling and would only proceed to a full assessment if there were clinical grounds to do so. Although seeing a psychologist would of course be expensive I think I'd get more insight in a shorter time than I would seeing a counsellor (which in my area would be at least £70 a session for someone bacp registered which would quickly add up) At least they might be able to confirm the face blindness! I once locked a colleague out of the building when we were working late as I didn't recognise them when they returned after nipping out for food, I had to pass it off as a bizarre practical joke but I was mortified

@missbunnyrabbit that's my thinking too. I would be ok with not getting a diagnosis, but if there was I think it'd be a helpful shorthand in certain circumstances. I know I've been assumed to be rude/aloof/unfriendly before (not remembering people I've met, lack of facial expression, being quiet because I can't work out when to talk) Because I can manage these things in work (when there's structure) I worry people are even more likely to interpret me this way compared to when I was younger, where they might make allowances.

I did the AQ several weeks ago and scored 42, which I was a bit surprised at. I'm looking into going the private route for assessment in the new year. I don't think it will do much, and I don't know that I would tell anyone, but it would explain a lot and I think it would be nice to forgive myself for certain things.

I had the is it nature or nurture question.

Am I like this because of my upbringing or did my upbringing just not help.

I paid for a screening questionnaire it cost £50 and you can go for referral dependant on results for a further £3000. J have seen my results. I have been told it would be beneficial to go for the 2nd part but I know now in my heart that it's probably a mixture of the 2 and am now coming to terms with what my results mean for me in the long term.

I’m really sorry if my post came across patronising or dismissive of your experiences, i didn’t mean it to at all! That is great you’ve had counselling. I would definitely pursue an assessment for autism in that case as a lot of what you’ve said would fit in my opinion.

It’s something I have been thinking about doing myself for a long time but just getting up the courage to talk to anyone about it is taking a long time!

I have pretty much the same problems as you including not being able to make eye contact and have suspected for years that I have autistic traits. My daughter also had problems at secondary school and was offered assessment aged 15 but made the decision not to be assessed (the school were already helping her and said that this would continue whatever). I have 2 siblings, one of whom also suspects they are autistic and the other I very much suspect is. We had a good childhood and both parents are very social with no issues so not sure where we get it from! I have just scored 37 in that test but I won't get tested properly, I feel I manage and a label would make no difference to me. However you would not be unreasonable to get tested if you feel it would help you to understand yourself.

I just did that test and scored 19 (and I think of myself as somewhat socially impatient and quite self- contained) so with a score of 38 I think it's totally reasonable of you to seek further investigation.

@DorothyWasRightTho I didn't read it as dismissive at all, I just thought it might be helpful to explain how I've got to this point. I think I just expected I'd have this stuff figured out by now!

It has been helpful to find that other people have had similar feelings about this.

Hi OP, I score low on that AQ test despite being autistic. Like you, I'm quite adept at appearing ok in social situations... Up to a point. Inside I'm usually dying and find it exhausting and stressful.

My partner is also autistic and does quite well in social situations by using logic, as you describe.

I would second looking at the Tania Marshall site, I think she's very helpful at describing female autism traits.

I hope you get the answers that you need.

@missbunnyrabbit

what do you mean by you have never believed in labels?

If you thought you had cancer or any other medical condition would that not also be a label?

Having a diagnosis of ASD is just that, a diagnosis, not a label.

I have been on a waiting list for assessment since early this year.

I scored 43! My DS who has an Autism diagnosis got 36. DH who is very much neurotypical scored 3.

I'm at the same point myself. I'm 50 and it only occurred to me around 6 months ago. I score 36 on the test. My problem is that I've now developed some long term physical health problems. These are debilitating and it means I no longer have the energy to 'mask' my autistic traits. It's like all of a sudden I'm this totally different person. I'm exposed. For that reason, I think I'm going to have to seek a diagnosis.

I have the same struggles as you. I find new places really difficult and meeting new people difficult. It's like my processing speed slows right down and I can't interact properly. And then afterwards I feel awful because I think why couldn't I engage in normal chit chat. Like the answers come to me an hour later. It's like I'm a rabbit in the headlights.

I've spoke to my GP about it and hopefully I will get assessed. It took me ages to pluck up the courage to speak to him.

I know private costs £1800 here which I don't have.

I also wonder if I'm dyslexic, the test for that here is £350 private, in still considering that.

I though i might have autism but i think i just aways had bad social anxiety. My son was diagnosed at age 5.

As a child i was often mute at school. I always struggled to connect with people. I have always been the odd one out. I was not interested in boys or going out at the weekend when i was a teenager unlike almost everyone else in my school.

I actually think my social anxiety had a greater impact on my life than my son’s autism has on him. He has always been confident and happy and sure of himself. He does have issues that he needs help with but his school are understanding and have made it possible for him to do well.

I spent huge parts of my life crippled my anxiety and lonely and struggling to fit in. Gradually my anxiety has faded away and i am still quieter than others but no longer care that much what others think.

I went the psychologist who diagnosed my son and she pretty quickly agreed she did not feel i had autism.

@MeltedButter, before you pay £350 for a dyslexia test, have you tried some online self-assessment screeners like this one?

Your post also describes me eerily accurately and I’m in the process of initiating a path to diagnosis (or a path to ruling out ASD). Certainly, you list a lot of traits that are commonly present in women with ASD - although these can be present in the broader population, it’s the clustering of traits and the wider effects they have that can lead to a diagnosis. I think it’s worth doing if you feel like the characteristics you list are negatively impacting your life - if they turn out not to be caused by ASD, then at least you’re one step closer to understanding what the real cause may be.

I’m not sure what the point would be. If you want to address the issues of feeling shame about your childhood and find relationships difficult then wouldn’t it be better to go straight for counseling.

Loads and loads of people find small talk difficult or tedious and loads and loads of people socialize by doing activities. I would put those characteristics as normal.

I could have written your list of symptoms. For me the Tania Marshall list was totally conclusive for me, I ticked nearly every single one.

I printed it off, ticked them and went to my GP with them. After a year’s wait I was diagnosed on the NHS, aged 24. My Mum is an early years SENCO and the person who assessed me was able to explain why I masked so well that she wouldn’t have been able to pick it up. Also my Dad is likely autistic and because I am the eldest child it was just passed off as “like my Dad”.

It changed my life completely, removed so much stress and anxiety around my social issues. I no longer force myself into social situations I’m not comfortable with. I have a hugely successful career in a competitive industry but the more my career grows, the more of my energy and masking it takes (work are aware and I have reasonable adjustments) so the diagnosis is useful in managing myself.

I have also had a successful romantic relationship for the first time in my life and we are getting married soon. My partner is fully accepting of my condition, is very neurotypical himself and we use the diagnosis as a useful tool to understand each other.

I cannot explain how much lighter I feel having lost that feeling of there always being something a little off!