Hi everyone, I'm new here after a bit of a crazy week wrapping my head around the fact I might be autistic. My therapist (for anxiety disorder) recommended I looked at autism in females and took some preliminary tests. I went home and scored 174/200 on the RAADS-R, 154 on RDOS, and 36 on AQ. I grew up with an autistic family member and honestly it just floored me to see the results for myself. I didn't realise how much I had been hiding it and what it looked like in someone who is "functioning" with no other physical disabilities or learning difficulties.
I thought the way I thought was normal and somehow everyone was just succeeding at controlling their brains more than me.
I thought my anxiety/depression days were just bad mental health days to power through and be eradicated, not my brain actually shutting down and protecting me from the over-stimulus of the outside world.
I thought everyone followed the rules of socialising better than me (make eye contact, don't fidget, don't go into detail, don't talk so much about your interests, ask questions about them, etc)....I didn't realise other people were doing this from instinct!
I could go on. It's like learning the whole world is not what you thought it was at all. All my struggles to stick at jobs and uni were just me FAILING at something everyone else manages. Now I realise just how hard I have been trying for 32 years to keep up with what comes much easier to other people. I am a smart woman and I thought I had to work out everything myself. If only I thought enough about my anxiety and meltdowns, I could control my brain into never having them. I read aspergirls and just cried. It's all about me!
I have gone through so many emotions this week, shock, denial, acceptance, fear that actually I will turn out to NOT be autistic and then I will be alone again, never fitting in. Ugh.
Anyway, I am feeling overall positive but have really struggled to function this week with the huge amount of emotion and information I've gone through. I am going to my GP next week with a letter from my psychologist, test results and a list of the things I now realise are not NT traits and struggles. I am nervous that I won't get referred, any advice?
I'm looking forward to getting to know you all better!
Hi Fast_and_the_curious & welcome. You're not alone here; what you've written is so familiar to many. For me it was like realising that everyone else had telepathy but no-one bothered to tell me. The cycles of shock, denial, acceptance etc. have recurred for me for 16 months now as I wait for my formal diagnosis (hope to hear in the next week or two). Like you, I have thought "no *wonder* I always hated X,Y,Z / couldn't cope with P,Q,R"
As for getting referred, the clinical bar to pass is a score of above 6 on the AQ10 (was for me anyway) - which is the 10 question version of the AQ50 you've already taken. Anyone who turns up at their GP with a self-compiled dossier of ASD-related test results and notes is presenting several red flags though and would be unlucky to not get referred! (it does happen though - in which case you can always ask to see another GP).
I've always known I'm different, just by how othere treated me or isolated me. People over the past few years have asked if I'm autistic, at first I scoffed at the suggestion. An autistic professional that talked to me at a bus station, left me feeling numb, in shock and questioning everything as my entire life flashed past me, things that had confused me so much in my life, began to make sense. I began to realise why others had thought me retarded, despite my intellectual loftiness. I had no idea that autistic people can also have good intelligence. Then as I explored this, I found admitting that I'm vulnerable very hard. I'd created this tough exterior that growled to keep bad people away, but when situations reached points where violence was imminent, the pretence collapsed and confusion set in, I struggle with violent situations and become very submissive. I've stopped with facades and have just accepted that I'm autistic and all of those defence mechanisms that I didn't mean to have, now stripped, the vulberabilities are amplified and I admit that this scares me. Being taken advantage of, led into situations unsuspectingly, etc. People are so friendly and I don't know when they are faking it or are being genuine. This has caused me to be suspicious of intentions in everyone and I'm scared to interact for fear of being taken advantage of. People touching me, even those I don't feel comfortable around and I feel unable to stop them. I also fail when it comes to seeking help, because I don't know how or who to ask. Efforts have been unsuccessful, you should talk to them, ah sorry, but we don't deal with that, try over there or call this person. Being pushed around with no results or getting lost and confused with red tape discourages me. Only in my mid 30's was this autism brought to my attention. Interviews, I have done alone, but shouldn't have. Just because, there are signs of intelligence, you somehow aren't a vulnerable person that can be misled or taken advantage of. It came as a shock to me, admitting that I've got aspergers syndrome and have serious vulnerabilities. At least you are now aware and can do something lass.
I hope one day soon I can access support where I can understand more about what is going on and see if there are any measures that can help me cope more effectively with this.
Thank you everyone for your replies. I thought I'd just add a little update!
Things have been going well although I myself am still feeling overwhelmed by it all, but accepting that it will just take time to settle in. I have gone to my guidance department at uni and had a thorough plan put in place for me. They were so understanding, it was weird having someone understand you more than you do yourself- I have always felt like no one got how my brain works! Each of my lecturers now get a copy of the things I need which cover lots of areas of information overload for me. If they do not follow my plan I now also have someone who will go in and advocate for me if needed. This is all just from me telling them I am seeking diagnosis. If I get my diagnosis I will then be eligible for DSA and can access more of the support like text to speech programs for my computer.
I made an appointment with my GP but it's not til later this month. In the meantime I found out the wait for adults in my area is 3-4 years! Since I would like to get full support to finish the last few years of my degree (third time is a charm!) I've found someone who can do a private diagnosis before I start the next academic year. The cost is making me feel so guilty though, as if discovering I might have a disability and would like to get diagnosed is a luxury I shouldn't be splurging on...silly me. I will get over the guilt soon hopefully, and one day maybe my savings will recover too!
I have also been stepping back and noticing what's really making me anxious instead of before when I was going into my head trying to figure out what thoughts triggered it, I am checking my environment. I have said to my husband I feel like I'm becoming MORE autistic but it must just be that I'm allowing myself to admit that certain sounds etc are bothering me instead of suppressing the connection (because everyone else seems to be coping fine with it, so it must be something else!). My headphones are my new best friend and I've been using them as often as I need without worrying about looking weird.
I feel like I've realised just how much energy I've been putting into being "normal" and it's a relief to start to let go of that. I've had some weird urges, like to hit and rub my ears when stressed, that I don't remember having in my life. Am I making this up? Or is this something I've suppressed and am only allowing myself to feel now? Who knows!
Did anyone else find that as they let go of trying, all these urges came up that they didn't know were there? Did it make you feel like you were putting on being autistic? OR being "more" autistic than you ever were?
That is such a good analogy! I've used it a few times since I read it, it really sums up how I feel about finding out. It's not that I feel overwhelmed by being autistic, it's that I'm overwhelmed that the rest of the world ISN'T!
Thank you, I understand that curing autism isn't needed and don't feel that way at all. I just thought I could cure my anxiety and finally fit in and manage everything like everyone else did. It's a bit of a shock to realise that no, the reason I struggle is a lifelong issue, but I am feeling confident that I can now overcome my anxiety issues by looking at them through an autism lens. However, I have also started to come to terms with the fact that I will never not be autistic and therefore there will be issues from living in a non-autistic world that I will always have to tackle.
3-4 years wait? That is intolerable, ( consider writing to your MP-this is not plastic surgery we are talking about, this is stuff which governs our every waking moment and can have a devastatingly negative effect upon our entire lives-time to start banging on some doors!)
On a more practical note, if your MP is of no use, the only thing I can suggest is that you move to this part of Surrey-or at least get an address here to where correspondence can be sent and register with a local surgery. I am in Leatherhead and cannot praise them highly enough-I did have to wait 15 months though but that would be a more acceptable proposition that the one which seems to be on offer.
You should not feel guilty about going down the private route if that is your only option-you are spending money on course fees in an attempt to alter your life chances and I would argue that paying for an assessment amounts to pretty much the same thing, It is something to need to do in order to move on with your life and achieve your full potential.
I wish you luck-wish there was more I could do...
Fast_and_the_curious said:I thought the way I thought was normal and somehow everyone was just succeeding at controlling their brains more than me.
This really resonated with me; I was exactly the same when I started investigating autism!
I also remember feeling very frightened that now I had finally (in my opinion) found what was causing my struggles, nobody else would believe me. Some GPs didn't (and I really hope that isn't the case for you) but after some time, I managed to get referred for assessment. Hopefully the letter from your psychologist will stand you in good stead.
Best of luck with the appointment and let us know how you get on :-)
Your experience really resonates with me as well but, on the good side, I've also found that once the shock wears off understanding what the problem is makes it easier to cope. I've found Tania Marshall really helpful - and professionals often need the differences between men and women on AS drawn to their attention. Aspienwomen blog really made a difference to my understanding: Moving towards an adult female profile of Autism/Asperger Syndrome and Where are all the females with Autism or Aspergers hiding? Life As a Chameleon