Don't know where to start re female adult diagnosis, head is tangled up mess

Hi, I'm hoping someone or one of the mods can help. 

I am female, mid-thirties and identify with a lot of traits on the autistic spectrum. This is something I have been aware of for three and a half to four years. I think reading and researching about it you could say, has been one of my interests. I have been a member of this forum for two years and stay on the periphery.  It has now got to the stage in my life where I want to seek a diagnosis. 

The catalyst for this being counselling therapy which I started yesterday. My brain and my mouth didn't match up. I found myself saying things which I now am not sure how true they actually were. We talked about identity and decisions.  It came across as though I had been coasting in life, when in reality the decisions I have made in my life have been very difficult to deal with. It was difficult to get much across because i was very emotional and i find it very hard to talk about feelings and emotions. Im going to end up rambling at this point to you so will leave it there for now. However, I can see this "delay" which I think is typical of me in that in order to understand my emotions and feelings, I need time to digest and reflect. The counsellor didn't know I thought I was on the spectrum; it was a 45 minute session and I had things I just needed to get off my chest. It's something I will mention at my next session. 

I have a good relationship with my GP and am currently reducing my dose of sertraline as the costs outweigh the benefits. I have mentioned the posdibility of AS to a previous doctor and she said it's something we can discuss and look into. Its on my notes. I would like to approach either of these GPs now. I know I will be asked "why do you think you are on the spectrum?". Well, how long is a piece of string?! 

The difficulty now is that, because I spend most of my waking life over thinking, and I have had almost 4 years input of ASC information, I KNOW in my head how my experiences can be explained through autism but am finding this very difficult to write down. There's too much to even know where to start. Because I have been flying under the radar all my life, and I would say I am a very internal person, I am going to have to fight my case, so I need things to come from me as coherently as possible. The therapist said yesterday (about another issue) it sounds like I can become paralysed by my thoughts and I think this has happened here.

I couldn't find the list on this website yesterday, but made three headings of social communication/repetitive behaviours/sensory to start off my notes, but like i said, notes are proving difficult to write. I have done questionnaires before but have found them difficult to answer as they seem to be aimed at stereotypical behaviours.

I just feel like a tangled up mess. I want to move forward with my life and this is the next step but I don't know where to start. There's also the risk I don't get a diagnosis but I will cross that bridge when I come to it.

Thank you for getting to the end of my ramblings.

Parents
  • Hello there, I don't normally reply on the forums, but I read your post and wondered if maybe you were my long distant twin, as I thought I had written it for a moment!

    I am 23 years old & female and struggled with mental health problems my entire life. I had mentioned to several healthcare professionals that I thought I may be autistic and many times it was brushed under the carpet as a passing thought, but never really truly explored. It took one doctor who looked past the label of "depression" to explore the possibility of me being autistic. I think the only reason why he went into such depths with me is because his son is also autistic, so he has experience with it, I had been extremely lucky to get such a fantastic GP who was listening for once. Unfortunately he said it would take 2-3 years to even get an appointment for an autism assessment, unless I paid to go private, which I obviously did. How are we supposed to wait between 2-3 years for an appointment where these things play on our minds all day everyday and torture us to the point of being unable to function properly day to day? My suspicions were correct, I am autistic and I was officially diagnosed last week. 

    First things first, please don't stress yourself too much over exact details. Our lives are so complex, not even a full 2 hour autism assessment could cover everything. Read up on the NICE guidelines for going about an autism assessment. Think about your childhood, were you an unsettled child/baby?, what were your motor/language skills like? (when did you first babble, talk, walk, ride a bike etc?) What particular things do you struggle with, understanding gestures, tone of voice, sarcasm etc? Any particular noises that grate on you? Do bright lights hurt you? Are you sensitive to any particular touch on particular areas of your body? Do you hate being touched in those areas if so? What about foods, do you avoid certain textures or flavours? These are all great things to start answering and thinking about. What was your education like, did you struggle with work, maintaining friendships? Do you have any learning disabilities? (not all autistic people obviously have them, but it is something worth exploring if you do). 

    If you would find it helpful I can give you the exact questions which were a part of my autism assessment if you'd like? Maybe it would guide you a little more. Going about the diagnosis and going through each part of your life, answering all these questions and bringing up the past is so extremely hard, I can totally relate to how you feel. I know exactly how it feels to have this all play on your mind every day all day. It is so extremely exhausting and I really feel for you. But once you go for it and you have that "label", you will be so relieved and everything in your life may make a little more sense. 

    Also, if you find it easier expressing yourself in writing, make a big list of everything I asked above and make them read it. You don't have to sit there and try and explain yourself verbally because I, for one, am terrible at that and my mind often "shuts down" when I try to recall such information. I am terrible at verbal communication!

    We are here for you. Please if there is anything I can do to ease your anxieties or any way, shape or form that I can help you, don't hesitate to ask!

    Sending love x

Reply
  • Hello there, I don't normally reply on the forums, but I read your post and wondered if maybe you were my long distant twin, as I thought I had written it for a moment!

    I am 23 years old & female and struggled with mental health problems my entire life. I had mentioned to several healthcare professionals that I thought I may be autistic and many times it was brushed under the carpet as a passing thought, but never really truly explored. It took one doctor who looked past the label of "depression" to explore the possibility of me being autistic. I think the only reason why he went into such depths with me is because his son is also autistic, so he has experience with it, I had been extremely lucky to get such a fantastic GP who was listening for once. Unfortunately he said it would take 2-3 years to even get an appointment for an autism assessment, unless I paid to go private, which I obviously did. How are we supposed to wait between 2-3 years for an appointment where these things play on our minds all day everyday and torture us to the point of being unable to function properly day to day? My suspicions were correct, I am autistic and I was officially diagnosed last week. 

    First things first, please don't stress yourself too much over exact details. Our lives are so complex, not even a full 2 hour autism assessment could cover everything. Read up on the NICE guidelines for going about an autism assessment. Think about your childhood, were you an unsettled child/baby?, what were your motor/language skills like? (when did you first babble, talk, walk, ride a bike etc?) What particular things do you struggle with, understanding gestures, tone of voice, sarcasm etc? Any particular noises that grate on you? Do bright lights hurt you? Are you sensitive to any particular touch on particular areas of your body? Do you hate being touched in those areas if so? What about foods, do you avoid certain textures or flavours? These are all great things to start answering and thinking about. What was your education like, did you struggle with work, maintaining friendships? Do you have any learning disabilities? (not all autistic people obviously have them, but it is something worth exploring if you do). 

    If you would find it helpful I can give you the exact questions which were a part of my autism assessment if you'd like? Maybe it would guide you a little more. Going about the diagnosis and going through each part of your life, answering all these questions and bringing up the past is so extremely hard, I can totally relate to how you feel. I know exactly how it feels to have this all play on your mind every day all day. It is so extremely exhausting and I really feel for you. But once you go for it and you have that "label", you will be so relieved and everything in your life may make a little more sense. 

    Also, if you find it easier expressing yourself in writing, make a big list of everything I asked above and make them read it. You don't have to sit there and try and explain yourself verbally because I, for one, am terrible at that and my mind often "shuts down" when I try to recall such information. I am terrible at verbal communication!

    We are here for you. Please if there is anything I can do to ease your anxieties or any way, shape or form that I can help you, don't hesitate to ask!

    Sending love x

Children
  • Thank you for your kind words .   You sound very lucky to have had an understanding GP. I feel mine are similar. I would say I have had mental health issues since I was a teenage but never diagnosed until last year. (Again, another example of internalising everything until it got to the point where I couldn't cope). I think you have hit the nail on the head when you said "these are things we think about all day every day". It's tiring isn't it. It's like constant analysing of everything - and this was going on long before I understood what autism was. Now I am analyising everything AND wondering if it's related to ASC.

    Re how I was as a child. I wasn't sure if I could remember things accurately..... It's something i have crypitally discussed with my mum without specifically mentioning autism (under the guise of "well I have always been an anxious person....what was I like as a child...?) To my parents, as an only child, I think i was just seen as a bit "different" or unusual. This is something I seem to remember Liane Halliday-Wiley mentioning about her childhood. I am very much like my dad and this has become apparent as I have got older and we have got closer. Our brains seem identical.

    Thank you for the offer of the questions, but I don't want to pre-empt things too much. I think I have underestimated that bringing up the past can be difficult. I have heard it mentioned several times on here. This is something which I didn't think would be a problem but I can now see from the one counselling session which I have had so far, that this is something which I WILL find difficult and will have to come to expect that. This is all assuming I get referred of course.

    I totally agree about expressing oneself in writing and that this is easier than speaking. (Before I knew about austim, I likened it to the "spiky profile" of my English as a Second Language students...)  I can't "go in cold". Even when this has happened (such as in work training sessions where the instructor has asked me for feedback on a task - because I haven't prepared what to say it comes out all jumbled up.) Similarly, since I have recgnised this in myself,  this is an example of a coping strategy I have in place now....I go more prepared to the doctors when I have regular appointments as I find that unelss I am asked something specifically I don't tend to mention it. Last time I did a work training session, i wrote down a few notes of what I might say should I get asked for feedback and i was more coherent. In contrast, I would also say I am an excellent verbal communicator - I have to be for my job as a teacher. But this is because there is structure to what I say in the class and have good subject knowledge. It's different to talking about thoughts and feelings.

    What made you decide to go for a diagnosis? I have decided that if there is a long waiting list I will go private as this is something I have already looked into.

    Apologies if this is a bit long - I think writing some of these extra things down on here is helping me untangle things in my head. If you want to discuss antthing feel free to PM me - I don't use this forum much so don't understand direct messaging etc.