New here - looking for feedback -- long! -- sorry

Post Reply New Topic

OK, I'm new here (though have been reading for several months) and this is another one of those "Do I have an ASD?" type posts. Sorry.

I wrote the stuff below to take to my GP to ask for a possible referral for assessment (I know it will take forever). But I am as anxious as heck that if I show her this she will laugh me out of town (I have no evidence of that, just a lack of security as it is a new GP) and tell me to "get over it" - pretty much the advice I have previously been given, along with shed loads of antidepressants, when I was struggling with depression and not getting better. Not much help, really.

Anyway, I hoping you guys could look over it and let me know if this sounds vaguely like an ASD before I go and embarrass myself. Please feel free to ask any further questions that are appropriate or which the doctor might ask - I'm not asking you to diagnose me, just to let me know whether an ASD might be a possible diagnosis. And if anyone chooses to "me too" some of then at least I'll know I'm not alone with that particular trouble! Which is always nice.

From my point of view a diagnosis (of anything other than - "you have depression, we don't know why, here are some pills, get over it") would be helpful. It won't change who I am, and I am making progress on my own, but I want to be able to understand myself (and more importantly, accept myself) better.

OK, so now for the copy & paste:

• I have difficulty knowing when to join in a conversation, and when not to. And what to say to join in, or how to approach a group of people who seem to be having an interesting conversation that I would like to join in. And how to start a conversation when I need to talk to somebody about something remains a mystery – usually I just start talking somewhere in the middle of my thoughts when I see them on their own and hope it is a convenient time.

• Making eye contact is very stressful – it’s very intense and feels very threatening. I can make eye contact with a few people I really trust on occasion; otherwise I will usually try to fake it by looking at someone’s mouth or neck or ear while they speak (usually mouth) because I know eye contact is expected. It is easier for me to take in information if I am not looking at the person speaking, but people interpret that as “not listening” or “not interested” or “just plain rude”.

• Missing the cue for when it is appropriate for me to speak, so contributing my thoughts at a later time when other people have already moved on. Or feeling like I have to write to contribute my thoughts at a later time, after other people have moved on, because I know I didn’t get to contribute them and I believe they are relevant/useful to the conversation or decisions that are going to be made.

• Difficulty expressing myself especially when talking about me, my thoughts, ideas or emotions; this becomes especially difficult if I recognise that the person/people I am talking to are not following/misinterpreting what I am trying to say because I am not expressing myself clearly. Vicious circle.

• Small talk is difficult, and I don’t see the point of it. I mean, I know and understand the reason for it, but that seems pointless, so I find it difficult. I can usually manage about two small talk phrases before things descend into an uncomfortable silence.

• I don’t like socialising in unpredictable environments – e.g. bars with groups of friends, around friends when they are drinking, with people I don’t know well, places with too much noise or too many people, unfamiliar locations. Often I prefer to spend time alone and I used to isolate myself a lot because of this. I have made progress - these days I love going to the cinema with a friend and will also often go alone at the quieter times … I don’t have to interact with anyone beyond the basics of asking for tickets and drinks (which I can usually, but not always, manage) and enjoy being around other people enjoying the cinema too. I am effectively alone but am not isolated. I also love travelling alone for the same reason.

• Problems/phobia of using the telephone because you can’t see the speaker. At least in person I can try to apply rules I have learned about body language to try to understand (if not always successfully) what a person is meaning when I don’t get the words – on the phone there is no chance yet you are still expected to respond immediately (unlike email, for example, which allows you to take time and care with the response). I have improved. These days I can make calls, but I have to really psych myself up to doing it. It can sometimes take me weeks to find the courage to make even the simplest phone call if I am not sure how the other person will respond (e.g. I’ve been trying to call the plumber since November!). I find it extremely challenging to answer the phone if I don’t know why someone is calling because I need to be prepared for conversations - Caller ID helps with this.

• An inability to get my thoughts out of my mouth (sometimes because there are too many of them) resulting in losing the power to speak - usually in emotional or otherwise stressful circumstances, or when asked direct questions (especially in front of others). This is very frustrating and has led to self-harm in the past. Now I try to grab a pen and paper or keyboard/computer and write what I want to say instead. But this isn’t always appreciated/understood/appropriate which makes it more frustrating because then I can’t communicate at all. This is usually when I melt down.

• Sometimes conversations (even the most inane) are so stressful - because, for example, I keep missing cues or can’t understand why someone is contradicting themselves - that I will say anything to try to end the conversation. I am sure that, should they wish to, the police would be able to convict me of any number of heinous crimes that I would never think to commit – not that I would be making a false confession on purpose, or for some manipulative reason, but purely because it is the easiest way to get out of the stressful situation and preserve myself.

• While I sometimes appear to function well e.g. when teaching a class, this takes an exceptional amount of effort and is exhausting. As a result I need significant alone time and rest time afterwards. For example, it usually takes a day or so to recover energy from teaching a class, and I will usually choose to travel home from similarly draining situations alone.

• People believing that words are the only way to communicate (especially spoken ones) really angers/upsets/confuses/pisses me off. The folk that I really trust have built that up with me not by using words, but rather by their actions and consistent behaviour (there may be written or spoken words involved but the content was not necessary … probably not explaining this well, sorry).

• It’s not that I’m crap at communicating – I work in a job in which it is necessary for me to use verbal and interpersonal communication skills on a daily basis to interact with, teach and encourage intelligent people who are facing a number of challenges including disabilities and mental health problems, and I do it well (ask my colleagues and bosses!). I work hard at my job, to understand the people, to understand how I can best help and to provide that help, and I enjoy the work a lot. In my professional capacity I generally function well, but it’s exhausting so I choose to work part time giving me every second day off to recover. When I’m not functioning well at work it’s because I haven’t had enough rest/alone time. It’s the social situations that screw me over. I just don’t get them and almost always end up leaving feeling very confused, or worse getting into real trouble.

• It’s difficult for me to change plans unless I plan to be flexible. This is difficult to describe; but there are some places/circumstances/events that I know are likely change that is OK as I can plan for that … probably not making sense here….things like flight delays or cancellations don’t bother me particularly much because that is part of air travel and I can plan for that. But if I’m planning to go to one hardware store and my husband decides to take me to a different one, that is a definite problem, even though they sell the same stuff and are the same distance away …

• Plan changes are a particular problem if someone changes the plan without warning, or assumes I am aware of a change of plan when I am not, and though I may sometimes appear to cope well at the time it can easily lead to meltdown. The actual meltdown might be delayed and triggered by something relatively minor, but it probably relates back to something that changed without my expecting it.

• I need to fully understand deadlines otherwise they seem to be arbitrary dates which mean nothing. I always meet a deadline if I understand why the deadline is there because then I understand the impact it will have on others if I don’t meet it. I actually like deadlines – they help me to prioritise the things I need to do. But most people seem to either expect you to divine the deadline from some mysterious statement they make that appears to be unrelated or they pick a date of thin air that suits them for some mysterious reason that they don’t explain. So sometimes it looks like I’m not making the effort to get something done but really I’m working to a deadline that I understand and prioritising things with closer deadlines.

• I am actually very adaptable and flexible and open minded. But I need warning of what I am supposed to adapt to/flex/open my mind to!

• Depression, anxiety & self-harm: I struggled with this quite severely in the not-so-distant past for a long time (since being a teenager, I am now 37). Currently I have much more manageable issues with this as I am starting to accept all the things above as being who I am rather than faults that I have created and need to change but repeatedly fail to do so.

• Obsessive & Intrusive Thoughts: Yup, still have these especially when a social situation has “gone wrong” – I analyse, over analyse, repeat, repeat, repeat, bore the few people I can talk to about it by repeating, repeating, repeating, analysing, analysing, analysing, not sleeping, wish my head would shut up, oh yeah, still obsessing, shut up I want to concentrate on something else, repeat, analyse, repeat, analyse, repeat…

• Special Interests: When I was child I collected soap. All kinds, shapes, scents of soap. And little plastic animal figures about 1 cm high. I eventually let go of these collections sometime after starting second year at University. I was also very interested in electronics (odd for a 7 year old girl?? I eventually went on to study Electronic & Electrical Engineering at Uni). As a young teenager I developed a special interest in an old movie star – everyone knew about this interest whether they wanted to or not, I watched his movies over and over, bought biography after biography and eventually in my early twenties I started an email list for fans and a created a huge website (this was the early days of the WWW). In my late twenties I discovered something else which I would say has probably become my special interest, taking over from the now long-dead movie star (though I still love to watch his movies). Fortunately this special interest also teaches me to be a better person and work on some of the challenges with interaction and communication I face every day.

• In addition I have shorter period “special interests” – things that I will throw myself into 100% and everything has to be about that for anywhere from a few months to a couple of years: books, TV programmes, internet forums, Christmas & birthday gifts etc.

• My mum says I always give 100% to something I am interested in to the exclusion of other things, and that I have always been like this. If I am not interested in something, I find it very difficult to motivate myself to do anything about it. But I will eventually if it’s obviously important to someone or something I care about.

I don’t believe that any of the above makes me unique or special. I believe that everyone, ASD or not, has difficulty with some of these things some of the time for whatever reason. But it’s the combination that leads me to think of ASD as a possible reason for things. What do you think?

I think you're one of us, honey. Welcome!

You sound exactly like me: mildly- to moderately-"afflicted". Be sure you understand what a diagnosis will and will not do for you. Are you in the United States? If you can work without significant interruption then there's no real reason to get a diagnosis (this is my opinion). It's wonderful to know, though, and to have a reason for the many, many differences you've felt and still feel in trying to navigate this society.

Additionally, be aware that most GPs have little to no experience with autism of any kind, past what the general public knows: "Rainman", Kanner's Autism, and the like. Unless they can give you a diagnosis for purposes of qualifying you for disability (very difficult in the United States), you will be marginalized and your concerns largely dismissed. (I, too, have been overmedicated, unsuccessfully, for depression and anxiety for YEARS). You need to understand what your own peace of mind is worth to you, and what it would mean to you, personally, if a doctor refuses to certify you as having Aspergers.

Good luck!

Thank you mv, that is helpful.

I am in the UK - and I don't want any access to anything. I just want to know - one way or the other. I am almost certain - this is not a spur of the moment thought, I've been considering this as a possibility for several years on and off. And generally I would be happy with a self-diagnosis.

But this time it was prompted by combination of things - an incident that led to me going AWOL from work for a while (fortunately, everyone just assumed I'd come down with a stomach bug that was doing the rounds), something which I have never done before and hope to avoid doing again, and a recurring communication problem with a person in my social life that really has come to a head. I have tried explaining some of the stuff in my first post to this person but they think I am making it up or making it excuses or blaming her. Of course it is none of the above - I just want to explain why we're having difficulties and offer some suggestions for how we can overcome them. I feel she would be more likely to listen if I had a diagnosis. It shouldn't be that way, but it is.

But like you say, I need to understand how it would affect me (on a personal level) if I went for a diagnosis and was told that I do not have an ASD. I think perhaps that is the reason why I haven't yet made it as far as asking the GP for a referral for assessment - I'm scared of that being the outcome.

You sound aspie to me. I don't think the doctor will laugh you out of the office... unless the doctor is clueless about autism.

Welcome to WP!! !

j0sh

You sound Aspie to me.

You might want to reorganize your list a bit. People tend to pay a lot more attention to the first items on long lists. They generally lose interest after the first few items. I would put one or two of the more Aspie specific items (e.g., obsessive behavior) near the top. Otherwise, your doctor may start thinking in terms of social anxiety instead of AS.

Also, be prepared. Many doctors only know about the more severe forms of ASD.

Thanks j0sh and Yensid - especially the helpful advice to reorder the list slightly.

I am prepared for my GP to know nothing, but at the same time I need to show her enough that she will agree to refer me to a specialist assessment centre. The National Autistic Society have given me details of what they believe to be the nearest one that carries out assessments for adults - it's a 4 hour drive away. But hopefully, if I can get the courage up to go see the GP, I will be able to convince her that a referral there is the appropriate next step rather than referring me to some psych doc who also knows nothing or giving me more damn antidepressants. I also realise that even if she refers me I am in for a loooooooong wait for an assessment; this is the NHS we're talking about.

OK, so I have finally had the courage to phone my GP surgery to make an appointment with my GP to ask about a referral for assessment.

It's not until the 31st March which is a nightmare of a wait and gives me far too much time to chicken out, but that's the NHS for you; I could have seen a different GP sooner but frankly this is hard enough without a random GP being thrust on me. Not that I even know this GP very well, but I was told when I registered at the practice that this one was the one to see if I felt I was "struggling" again ...

I miss my old GP at my old practice who I built up trust with over 10 years but I now live outside that surgery's catchment area. Dammit.

I contacted the National Autistic Society and they gave me the details of an Adult Assessment Centre which specialises in ASD and covers my area - problem is it's a 4 hour drive away (I drive well, but prefer not to drive because it is exhausting at the best of times, and a confusing nightmare at the worst) and on no simple public transport route. They suggested I ask my GP about any local adult ASD specialists, but I think it's highly unlikely.