36 year old female who thinks she might be autistic

Ok so this post is my attempt to empty my brain of the thoughts that have been hounding me for months about possibly having autism and work out how to approach my GP about being referred for diagnosis.  This might turn into a bit of a ramble.

First off, I'm a 36 year old female from Scotland who has suffered from anxiety for pretty much my entire life.  I was diagnosed with anxiety/depression in my mid-20s after being practically agoraphobic for years.  I was put on antidepressants and that was pretty much it.  At the time, I couldn't leave the house without my grandmother with me.  I didn't really speak to people.  I didn't socialise or have friends and pretty much just lived in my own wee world.  However, I didn't really feel depressed.  After a few years, the GP sent me to CBT where the therapist diagnosed me with social anxiety.  At the time I felt this 'label' suited better than depression.  I had really low self esteem, zero confidence, couldn't handle socialising, would agree to do things for people even though I knew there would be know way I could complete them, etc which led to me getting overwhelmed and isolating myself.  The therapist said my biggest coping mechanism for my anxiety was avoidance.  I finished the course of CBT and while my negative thinking cycle did get better, socialising and dealing with people was still something I couldn't handle.  I just got better at faking it.  I've had more CBT since then but it didn't work for me because I had trouble identifying measurable goals.  I couldn't articulate what I wanted other than 'getting better'.  The last time we worked on developing and keeping to a schedule but the less said about that the better.  I tried explaining to the therapist that I don't feel sad or depressed but they disagreed because I was crying through the initial interview.  I wasn't crying because I was upset though.  It's unfortunately just what I do when talking about my mental health.  I think it's more about feeling vulnerable and frustrated than anything.

Anyway, one of my biggest struggles is how I relate to other people which I think is the cause of most of my social anxiety.  I don't really make emotional connections with people.  On good days, I can enjoy interacting with someone but it doesn't really go further than that.   I don't miss people when they're not with me - not even family.  I might enjoy seeing them if they're there but I don't really care if they're not.  I tried explaining this to the CBT therapist but she said it was just my social anxiety and that forming relationships take time and that it would come the more I practiced socialising and became more comfortable.  That just hasn't happened for me.  I have people I've know for years, that I talk to regularly and still I don't feel super close to them.  For example, in the past few years a couple of people I know have died.  These are people I was on friendly terms with.  I saw them a couple of times a week at my grandmothers' clubs and had known them for a few years but when they died I didn't really feel sad or miss them.  The therapist just didn't seem to want to accept what I was saying.  They said I was suppressing but I'm truly not.  She also said that stuff like small talk would get easier with practice because my negative thinking patterns would be broken when the worst didn't happen like I expected.  I am better at faking small talk these days but I still find it extremely off putting and am never sure when I should talk or let someone else talk or how to end interactions without seeming abrupt.

I've never really felt lonely despite being alone most of the time.  I did have friends as a child and teenager but I was a one at a time kind of person.  As I was raised by my grandmother, I spent most of my childhood with other adults.  I developed quite quickly as a child, walking my 9 months and reading and writing before I started school.  I was a very chatty child.  My nana said I would talk to anyone and was constantly getting into trouble at school for distracting other although I always had good marks.  I was a bit of a smartarse in high school.  I was always quick with the sarcasm and jokes but always felt like I was from another world from everyone else because I wasn't interested in the same things or interested in relationships.   From my lat teens on, I spent a lot of time on the computer but never really spoke to people online either.  It took me a long time to figure out that I identify as asexual and aromantic. I have never had any kind of sexual or romantic relationship and have never really understood the appeal of them.  It's the same with children.  It's never been something I've wanted because I don't think I've got the patience or maternal instinct but if you tell people you don't want kids you get the standard 'Oh it'll be different when you meet the right person'.  I've never told anyone about being asexual or aromantic because most people treat you like a freak for not wanting kinds never mind not wanting the rest of the 'normal' lifestyle.  To be honest I think that where a lot of my anxiety comes from.  I can't relate to wanting those kind of things from life which just makes me feel even more different than I already do.  It makes it hard to relate.

Anyway, I was reapplying for my PIP in the middle of last year and was struggling with how to explain why I struggle with people, etc.  I was on a Facebook group asking advice for how to word it when someone left me a message asking if I had ever been tested for autism.  She explained that she too was in her 30s and had spent most of her life been diagnosed with depression or social anxiety until finally in her early 30s she was diagnosed with autism.  She said that what I was experiencing sounded like symptoms she experienced.  I looked into female adult autism any I could see a lot of the symptoms in myself.

* Primarily the difficulties I have forming and maintaining relationships.  Of the few friendships I've had in my life I've never been able to maintain them either because I moved and didn't keep contact or because I lost interest in them.  I put people into categories in my life.  For example, there are people I see at my grandmothers clubs and can talk to them in that setting but it completely throws me if I see them elsewhere.  It was the same in school.  The people I was friends with at school, I only really saw at school.  I don't know how to react if I meet someone outwith the place I'm used to dealing with them.

* I don't think I'm very empathetic.  For a long time I was worried I was a sociopath because I didn't really care about other peoples problems or stuff I saw on the news.  I can watch the news about atrocities or those adverts for Africa, etc and not care. Still, you show me an advert or show about injured or sick animals and I it hurts my heart.  Likewise, I was worried because I don't really get the big deal about babies but then you show me a kitten or puppy and I need to pet it.  I have a couple of dogs and a bunch of cats and can honestly say it would break my heart if anything happened to them and that I love them more than pretty much anything else.  People problems though?  I'm kind of meh about that to be honest.  

* as a child I was very imaginative.  I loved to read an write up through my teen years.  I was always playing pretend.  As an adult I still spend most of my time reading but am not very good at telling stories anymore.  I don't feel very imaginative but I do have a fantasy life that I usually disappear into when falling asleep, driving or listening to music, etc

* I don't really have a lifelong special interest but do obsess over new hobbies (cake decorating, cross stitch, exercising, nail decoration, etc) and obsessively collect the stuff I need for the hobby then move onto the next thing.  While I'm still interested it's like I'm driven to get everything for it, like I can't rest until I do.  I suppose it's more the finding out everything about the thing and collecting the equipment for it that I like than the thing itself. As a child I collected things like sylvanian families, magazines, etc and as a teenager I obsessed over tv shows like Buffy, Angel, Charmed and loved video games.  I didn't really talk about my interests a lot to others.  I learned to others would think it was a bit weird how excited about a tv show I would get or how much they consumed my life so I became very private about the things I liked because I felt it was another thing that set me apart.  With video games, for example, I could let my cousins play the console but they'd have to start their own game because I felt very distressed if my game wasn't 100% completed by me.  People thought that was weird.

Nowadays my special interest I would say is fan fiction.  I spend more of my time reading fanfiction or playing games on my phone.  I find it so easy to get completely absorbed in reading about my favourite shows and characters.  Again, this isn't something I feel comfortable talking about with to people.  

* I'm quite possessive of my things and space.  I don't like it when people touch my phone or computer and it make me really uncomfortable to have people in my room, even family.  I can't really explain why but whenever my cousins kids would visit they'd always wonder into my room to play and it would freak me out.  

* I don't really like to be touched.  I can tolerate a hug from family but it still makes me uncomfortable and I often have to stop myself from moving back when people step in for a hug.  I remember as a child my grandmother would take me to church and after doing the 'peace be with you' bit my skin would feel like it was crawling to the point I would actually spit in my hands and wipe them to 'clean' them.  Showing emotion also makes me feel very uncomfortable.  For example, I find saying I love you to family or even calling my Mother 'Mum' difficult.

*I struggle a great deal with executive functioning.  I didn't really understand this until I looked into autism.  I always just thought I was a procrastinator (an avoidance technique my therapist said) but it's more than that.  Part of it is that I get completely absorbed in doing things I like (reading, puzzles, etc) and can look up to find 3 hours have passed so I don't have time to do other things.  Also, I find that if one thing isn't done - for example my room isn't tidy - this means I can't do something else.  In this case I can't do my skincare routine (because my dressing table isn't clear) which means I don't brush my teeth or brush my hair, etc.  It's the same with chores.  If one thing isn't done there's a knockoff effect.  It sounds silly but it's like my brain can't process doing one thing without the other.  This leads me to not doing anything and my house being a complete mess which in turn makes me more anxious and stressed.  Plus I'm terrible at estimating how long things should take.  During my last lot of CBT I was to draw up a schedule and basically plan my entire day but I'd write do shopping and allow an hour but it's take me two.  It's the same with allowing for time to get places.  I'll think it'll take me half an hour to get somewhere or that an appointment will take a certain amount of time but I always underestimate and end up late for everything.  I also struggle with memory so I constantly write to do lists then forget to look at them.  Or if someone gives me a task to do, I always want it broken into steps or else I get overwhelmed.  I do prefer routines.  If my routine gets interrupted then I'll get distracted and forget the rest.  For example in the morning I let the dogs out, make a cup of tea, feed the cats, sit down and listen to my Alexa flash briefing while taking my medication.  If I get interrupted, for example if my nana's carer comes in a bit late/early and I get distracted I'll end up forgetting to take my medication.  To this end, despite being fairly intelligent and mostly sensible, I genuinely don't see a day where I could get on with a job like a normal person.  At the moment I'm a full time carer for my grandmother who was diagnosed with dementia a few years ago.  Don't get me wrong, I find this challenging in itself because I struggling with comforting people beyond awkwardly patting them on the head and find it frustrating at times because she can't understand things easily anymore.  Plus, I find it very difficult to lie to her when she asks me things like where her mother is (dead) and if I can see the tiger outside her bedroom window (no).  The literature tells you not to argue, etc but I find it a real struggle to tell her something when I know it's not true.  I don't know why because I know it's for the best and I don't want to upset her but it's something I really struggle with.  Mostly, I just try to distract her.  Still, I don't foresee a day when, for example, I would feel able to go in to an office and do a normal days work without issue.  

* I ended up having to drop out of university because I couldn't cope. I started Uni a couple of months after my 17th birthday.  I made it through first year okay.  I didn't adjust well from high school because I knew no one and spent the first few month alone not talking to anyone before I found someone to attach myself to.  I didn't really like university because I didn't know (still don't) what I wanted to do with my life and didn't have the self discipline to force myself to study someone I found tedious.  I had decided to study history for no other reason than I was good at it in high school.  I didn't particularly enjoy it so making myself study and not leave assignments to the night before the deadline was a challenge.  Still I did alright.  Second year, though, was a huge problem because it was where your grades stopped being fully essay based and a big chunk of them was doing an oral presentation as part of a group.  For the first few months this stressed me out terribly until it got the the point where I deliberately hurt myself so that I could have a reason to drop out for the year (it was just before exam time too).  I spent the next few months in the house at which point I realised how much more comfortable my life was like this and started to have trouble leaving the house at all.  I tried going back to uni the following year but I couldn't cope a left.  I went to work straight away but couldn't cope with that after a few months and lost the job.  That's the only job I've ever had and it was 16 years ago.

* I like order.  Now, I'm not very good at establishing or maintaining that order which ties back to my executive functioning problems.  Still, I like things to be organised.  I have my clothes sorted into different drawers, everything in my room has a place.  I find looking through organisation blogs really relaxing but ultimately stressful because, for as much as I love the idea of organisation, I'm not very good at implementing it. For example, my room is a mess right now (partly because when things get out of place I find it difficult to know where to start without getting overwhelmed and avoiding it) which stressed me out.

* I don't have a lot of sensory issues but there are certain types of fabric that I can't wear because it they make my skin itchy like some wool and lace.  I do get overwhelmed quite a lot my smells though.  I tend to use the same laundry detergent, soaps, etc because there are a lot of scents that I find too strong and that give me a headache.  There is only one type of deodorant I can wear without the smell making me nauseated and I find I can't use most perfumes (even if they smell ok in the bottle, they smell awful when I wear them).  I also experience phantom smells a lot.  Very frequently I'll smell something - usually cat urine, cigarettes or burning rubber - and it'll be so strong it'll make me feel sick and give me a headache.  I've asked multiple people at the time and no-one else is able to smell it.  It's drives me nuts!  I have issues with sounds too to a lesser extent.  Mostly things like sudden sounds can make me jump out of my skin or sound like someone breathing, snoring, tapping, chewing, etc in a quite room make me sort of angry.  I usually just block them out with music or wear earplugs.  My biggest trigger for having a 'sensory overload' episode is usually when I have to be around people. Even just something like shopping, I'm always surprised how completely drained I feel when I get home.  I sometimes get to the point where I forget words and end up a stuttering mess because my brain is just exhausted.  One big stumbling block of a sensory issue for me is I can't wear gloves.  I have Reynaud's so my hands and feet are constantly cold.  My fingers turn blue and get sore and stiff.  Obviously wearing gloves is the best thing for this but whenever I do wear them I feel like I've lost one of my senses.  It feels like I can't feel things the same like my grip is off or something.  I find it really disorientating so I end up not wearing them and having to deal with constant freezing hands.

* I'm not sure about stimming.  I'm not really sure what qualifies because when I think of stimming, I think of the stereotypical rocking, oral or physical tics, etc that most think of about autism.  I don't do any of those but I do obsessively bite and pick my nails, tap my collarbones and stroke, pick and scratch my eyebrows.  I've had moments where I'm actually digging the tweezers into my skin and making myself bleed but it's like I can't stop until the skin feels smooth again. I pick at the skin around my nails pretty much constantly.  I also have to touch anything soft around me.  If I'm walking in the home furnishing aisle of a shop, I have to touch all the blankets and pillows.

* Aside from the social problems I mentioned above, I'm not great about eye contact.  I'm never sure if I'm making too much or not enough.  I'm sometimes reading too much into someone else behaviour or tone.  As a child, my family said I was very blunt and always said exactly what I was thinking even if I shouldn't.  As an adult, I don't think this is true as much.  I still say things I shouldn't sometimes but for the most part I think I'm very polite.  I feel like I'm faking my facial reactions a lot of the time.  For example, I hate getting presents.  I like getting things but, even when I love the gift, I feel like I'm not making the appropriate facial expression.  It's the same in conversations.  I feel like I'm wearing a plastic smile most of the time because I don't know what else to do with my face.

Here are some of the symptoms that I don't think fit:

* I think I'm a pretty sarcastic person while most sites say autistic people are too literal.  I'm not always great at knowing when people are being sarcastic to me though.  There's one GP at my surgery that I hate getting because he is very deadpan and I never know how to react to him because I'm never sure if he's being serious or joking.  I'm also able to understand idioms without much problems.

* I think I'm okay at recognising facial expressions and things like that.  I'm pretty good at understanding peoples behaviour from an intellectual point of view even if I may not get it emotionally.

* Like I said above, I don't think I'm very imaginative as an adult.  I do have a bit of an inner life but can't really do things like guided meditations where you have to visualise a beach.  Mostly when I shut my eye I just see darkness.  I do get completely absorbed in stories when reading but don't realise visualise characters or places described vividly I don't think. 

* I haven't been told that I talk about the same thing over and over again but then, like I said above, I tend to internalise most of my interests.

* I haven't been told I lack facial expression or have a monotone voice.

Like I said at the start of this post, I'm trying to work out what to say to the doctor when they ask why I want to be assessed for autism so I was hoping putting it down in words would help.  My main concerns are that a) I've had trouble getting referred for things in the past (physical problems I had) because the GP has said there's not much point getting a official diagnosis because it wouldn't change the treatment (this was in regards to my hypermobility disorder).  b) with the covid-19 situation, my surgery has become a no name practice which means I can't phone up and make an appointment with my own GP (I usually see the same one for anything personal).  Instead you have to phone up and ask to be triaged and tell the receptionist why you want to speak to the doctor.  At this point one of the GPs will phone you back and ask what the problem is.  If they can sort it out over the phone they will.  If you need to be seen you will be given an appointment with one of the locum GPs.  I'm not great at speaking on the phone at the best of times.  I'm not always good with tone and prefer to be able to read facial expression.  So talking about something relating to my mental health  (I know autism isn't a mental health problem) or emotional state over the phone is a giant hurdle for me.  Plus, I'm not really sure how to 'give a brief description about the problem' to the receptionist like ask.  Then, if they do decide I should see someone, I don't really feel comfortable opening up to a stranger.  I find it difficult to disagree with a GP at the best of times never mind when it's something that makes me feel this anxious.  I'm not good with putting my foot down or standing up for myself so if the GP disagrees with me or says no I wouldn't know what to do about that.

For those of you that made it to the end of my ramble, how would you deal with asking for referral over the phone?  Are there any symptoms of adult autism that don't fit you and you've still been diagnosed?  The reason I want to do this now is that, aside from the fact I never considered autism until it was pointed out to me, I want be able to understand myself better and be able to access support in the future.  My grandmother's dementia and COPD has declined quite severely in the past year.  For my entire life she has always been my entire support system and I'm worried, perhaps selfishly, about what's going to happen to me when she passes away.  I honestly don't know how to cope with the world on my own and want to get a diagnosis (if I am autistic) so that I have access to any support I may need in the future.  A huge part of me is terrified that I'm not going to be upset when my nana passes away because I wasn't really affected by my friends deaths.  Realistically though I don't think I'll be able to cope without her.  When the worst happens, I want to have a diagnosis in place (again if I am autistic) so that I can say look I'm autistic and I've never lived alone and have no social life can you help me?

FYI I did complete the AQ test and scored 36/50.  Also, my mother wasn't really around for the day to day stuff in my life.  I've never lived with her and from ages 10 - 17 only saw her a couple of times a year so I don't think she'd be much help with answering questions about my childhood and my grandmother doesn't remember my childhood due to her dementia so I'm a bit worried about the part of the assessment.  My memory isn't great and I don't remember much off the top of my head.  I was wondering are the questions they ask about your childhood quite detailed?  I have remembered some stuff like being obsessed with a sand flip picture and an oil/water hourglass type ornament which would probably class as sensory toys these days.  Can you do the assessment without a family member there?

Also, I've not found mention of this anywhere in the autism literature I've found but did any of you suffer something like disassociation as a child? I remember vividly watching myself in the mirror in our living room at about age seven.  I would look at my face and this weird feeling would come over me like I was looking at a complete stranger.  It was sort of like my brain had been zapped into a strangers body.  I'd be looking at my face and be saying to myself 'This is me. This is what I look like.' but I just couldn't recognise the face.  There'd be this visceral feeling like this wasn't me.  Like I was wearing a mask or something.  Might be completely unrelated to the rest of my symptoms but I've always remembered what a strange feeling that was.